I am a registered dietitian who works with adults with Autism, but I happen to be the mother to an amazing Zoey. She struggles with oxalate. Over the past 9 years I thought I was maintaining her low oxalate diet, but a bad handout from another registered dietitian that is trusted in the kidney disease community online resulted in me basically poisoning my daughter with plantain. She was only getting a little plantain every now and again for many years. Looking back on this situation, it worsened in 2021. when I switched out some of her flour in my low oxalate bread recipe with plantain flour. It culminated in severe oxalate poisoning in January of this year when I used only plantain flour to make banana muffins. She ended up in the ER due to severe vomiting. The doctors couldn’t figure out what was wrong and told me she had some unknown virus. After they left they released all the results to her MyChart. I saw that she had high amounts of amorphous crystals in her urine and bladder debris. The only change I had made was the plantain flour increase.
Some good has come from that poisoning because I realized that plantain flour is NOT low in oxalate, but more importantly I made a huge discovery. I asked for metabolic lab work to be done and the results forced me to explore a connection between Zoey’s increasing serum retinol levels and her dietary intake of oxalate. As her dietary intake of plantain flour increased, her serum vitamin A increased.
I would also like to say my clients with neurological issues are having similar symptoms as Zoey. I, of course, can’t share their stories here, but they all are impairing Vitamin A metabolism in different ways (Miralax, high Vitamin A tube feedings, High Vitamin A supplement paired with famotidine, Iron deficiency and high dietary oxalate).
This isn’t an isolated occurrence, and if you search vitamin A in the TLO group (trying low oxalate group) it is a recurring theme there as well. In fact, I think that many of the skin issues that this group calls “dumping” are actually localized increases in retinoic acid production due to decreased oxalate levels in cells. When vitamin A metabolism moves forward to retinoic acid, they see skin peeling off and hair falling out because new skin and hair are finally being made in the correct way instead of excessive keratin production.
Now on to my hypothesis.
Hypothesis:Oxalate can impair vitamin A metabolism which results in high retinal levels and complexing of retinal with ethanolamine which lowers this important ether lipid in the nervous system resulting in neurological sequelae of autism.
Mechanism: Zoey, my 11 year old daughter, has hyperoxaluria of some kind (waiting to get into metabolic genetics to see if it is genetic in origin, but as you know dietary oxalate also must be reduced in cases of familial hyperoxaluria). She has elevated ALT, keratin accumulation in the skin, headaches, fatigue, increased histamine reactions, history of kidney stones, fatigue, poor wound healing, and failure to grow. She also has diffuse cerebral dysfunction with epileptic discharges, gross and fine motor delay, impaired speech, ataxia, and dysphagia. I requested plasma amino acid, urinary organic acid, pyruvate, lactate, and vitamin A levels checked due to her severe fatigue and the problems above. Her vitamin A levels have been creeping up for the past two years and are at toxic levels now (toxic on quest lab at 71). Her lactate is severely low. Her ethanolamine is very low.
When the body is producing lactate, it also produces NAD+ which is what drives retinol metabolism forward. While looking at ways to help her itching skin, someone in a support group mentioned that lactic acid lotion helps with keratin accumulation. Then, my mind exploded and I went on a deep dive into literature. What I found is that Oxalate doesn’t directly inhibit alcohol dehydrogenase or retinol dehydrogenase or aldehyde dehydrogenase which was what I was searching for. Oxalate actually impairs lactate dehydrogenase (LDH). I hypothesize that oxalate takes away the “energy” needed to drive those reactions forward by impairing LDH. LDH is actually the last enzyme involved in the formation of oxalates. I believe that oxalate being able to have a feedback inhibition on LDH is a safety mechanism built into our human biology, but that it backfires and wreaks metabolic havoc on vitamin A metabolism and also energy metabolism.
So, essentially my 11 year old daughter is potentially toxic in retinol because she can’t convert vitamin A to retinoic acid. She has all the signs of vitamin A deficiency, but is actually toxic. I believe her retinal is also high, and in fact, that carotenoids have now become a problem for her due to these enter vitamin A metabolism at the level of retinaldehyde. I believe that retinal is “stealing” her ethanolamine by creating A2E in the nervous system. I hypothesize that this is the part of the cause of her Autism. She obviously has MBD5 deletion, but many of the kids in our support group are not as disabled as she is from a fine motor, gross motor, or verbal standpoint. These other kids have massive seizures but live life normally. So what if this is the difference? What if I can help her be “better” although she is amazing already.
I believe that gut microbiome as well as B6, Thiamine, and Niacin depletion are contributing factors to low NAD production resulting impaired vitamin A metabolism and excess retinal stealing ethanolamine. In fact, Zoey’s labs show high tryptophan, high lysine, and low urinary glutaric acid indicating that her secondary pathway of NAD production is severely compromised as well. I hypothesize that excessive urinary excretion of oxalate increases B6 losses and leads to down regulation of NAD production via Tryptophan and Lysine interrelated pathway.
However, as I described above, there is more than one way to screw up NAD/NADH balance in the body resulting in impaired Vitamin A metabolism.
I would love to be part of a research study on the link between oxalate, vitamin A, ethanolamine, and Autism or any component involved in this crazy pathway that I have identified over the past two months. As a dietitian, I have a unique perspective on this issue and could be helpful in research and writing. Also, I will sign my daughter up for this research study as well, if we could help in any way, as long as it is a “safe” study. She has suffered miserably these last few years because of a well meaning dietitian’s error. I want Zoey’s suffering to have purpose.
I met a nerd friend here in a vitamin A toxicity group, Jenny Jones. She has a degree in genetics, a PhD in human molecular genetics, and a degree in psychology . We shared our research on Vitamin A metabolism right here in posts and then started messaging. She had some of the puzzle pieces I needed, and I had some that she needed.
We have a working hypothesis of what is going on with Vitamin A metabolism! NAD:NADH and NADP:NADPH It’s all about the ratios.
Depending on your ratio of NAD:NADH you are teetering between retinoic acid levels being high or low and retinal and retinol being high or low. When you increase NAD, you can metabolize retinol to retinal and retinal to retinoic acid. When NAD is low, you can’t make retinoic acid.Once you finally repair your NAD levels, you may not be able to clear the retinoic acid from your body. If NADPH is low you can’t use the enzyme CYP26, a cytochrome P450 enzyme that metabolizes retinoic acid.So…still working this out, but I think that people with low NAD+ are actually low on retinoic acid as vitamin A is tied up in retinol and retinal, and that is why they have deficiency symptoms. NAD destroyers prevent vitamin A from becoming Retinoic Acid:
Oxalate (impairs LDH)
Glyphosate (can be metabolized to oxalate and formaldehyde)
Miralax (turns into oxalate, also uses up NAD during breakdown to oxalate)
Thiamine deficiency
B6 deficiency
Niacin deficiency (but we can make this in our body from tryptophan if B6 levels are normal)
Excess glycine (think collagen) becomes oxalate
Excess vitamin C becomes oxalate
MTHFR polymorphism or folate/B12 deficiency (Prevents glycine from becoming serine. Glycine is pushed towards oxalate production.)
Gut dysbiosis – bacteria steal NAD
acetaldehyde
alcohol
famotidine and other H2 receptor antagonists
metformin
etc (see my blog for more)
ARE YOU IN A LOW NAD STATE????
I think many people stay in this low NAD state for a VERY long time due to dietary habits and medication and this is what causes all the things I am seeing in my nutrition clients (eczema, blood clots, keratosis pilaris, keratinization of heels and elbows, liver damage, obesity due to storing retinol in fat cells, poor wound healing, horrible skin issues, leaky gut, and decline in neurological function due to my theory that retinal is binding to the ether lipid ethanolamine).
Then, when they restore NAD+, their retinoic acid levels go high, and sometimes too high, and they get toxicity symptoms such as peeling skin, nausea, and headaches. (My daughter’s Zoey and Mya are doing this now.)In the low oxalate group that I am in they call these types of symptoms “oxalate dumping”.
I think these symptoms are temporary retinoic acid toxicity due to a decrease in oxalate inhibition of LDH which in turns allows for production of NAD. In fact, the solution for the “oxalate dumping” symptoms is to eat a little bit of oxalate and that will stop them. Interestingly, it’s hard for individuals on a low oxalate diet to evaluate for the dumping of oxalate in the urine because they say it fluctuates throughout the day and doesn’t coincide with the symptoms of oxalate dumping.Zoey has been on a low oxalate diet for three weeks. The only time I saw her urine cloudy was when I gave her a 3oz baked potato and within four hours she was peeing cloudy.
Since then she has had all the symptoms of “oxalate dumping” – peeling skin, headache, nausea on and off without any cloudy urine. So, I bet what I am seeing is retinoic acid toxicity. Interestingly, to stop the “oxalate dumping” the support group recommends that people eat a small amount of oxalate. Well, if you eat some oxalate, you will stop making retinoic acid because you impair LDH and drive NAD levels down. Hmmmm…..I mean….I could be wrong….but??? Maybe it’s just both. Maybe it’s oxalate crystals coming out of storage AND retinoic acid being to high. I really think it might just be rapid conversion of retinol and retinal to retinoic acid.
SO NOW WHAT DO YOU DO WITH ALL THAT RETINOIC ACID???
Vitamin A can only leave the body after becoming retinoic acid. In the other forms it is just stuck there.So, at the same time we restore NAD+ by not sabotaging ourselves with the long list of things that mess that up, we should be restoring NADPH as these two energy providers are connected in that you can make one out of the other.We have to have NADPH so that we can metabolize retinoic acid and get it out of the body through CYP26 pathway. Also, Jenny reminded me about the need for glucuronide pathway after CYP26 metabolism. There are so many drugs and other substrates that can tie this up. One thing that did it for me was stevia. I actually became toxic on it. That’s a really good story that I need to blog about. That stuff is poison as well.Anyway, in some people this CYP26 and glucuronide pathway is broken, so I need to see what would prevent NADPH fueling CYP26. CYP26 so far has no specific inhibitors identified and no substrates that compete for it. So I think what is impairing CYP26 is actual levels of NADPH. I do know one major source of NADPH is the Pentose Phosphate Shunt pathway so I’m going explore what could be clogging that pathway.Possible NADPH destroyers:
Excessive drug use. Most drugs require cytochrome P450 enzyme metabolism
Impairment of the Pentose Phosphate Shunt (source of NADPH)
low NAD (see all the things above)
Jenny points out that cytochrome P450 enzymes are heme dependent and so iron deficiency and other deficiencies in heme synthesis play in here
……..to be continued….because I’m still researching
Jenny and I both agree that too much vitamin A is not good from supplements or fortified foods (I’m including beta-carotene), but that the bigger problem is poor metabolism of it.So…still diving deep to figure this all out, but Jenny Jones really helped me along, and I helped her.
This journey has been amazing! I never assume that I am an the only expert in anything. I’m not even an expert on this subject. I just have some of the puzzle pieces. There is so much information in this world and sharing it is what helps other people. And please….please…please…comment with anything you think needs to be added or taken away from this long post!
Vitamin A metabolism is an important pathway for anyone with a neurological disorder or neurodivergent. It is possible that unmetabolized retinal (one form of vitamin A) is complexed with ethanolamine, an ether lipid that is needed for brain function. Low ethanolamine is implicated in Autism and Alzheimer’s disease as well as neurological diseases as one of the causative factors of neurological decline. I hypothesize that unmetabolized retinal is stealing ethanolamine from the brains of individuals with neurological decline IF their vitamin A metabolism is impaired. It would be important for anyone with neurological decline to evaluate their vitamin A metabolism to ensure they are converting dietary and supplemental sources of vitamin A (beta-carotene, alpha-carotene, and beta-cryptoxanthin, retinyl palmitate, Vitamin A acetate, Vitamin A palmitate) into retinoic acid.
In addition, I hypothesize that poor vitamin A metabolism is a contributor to chronic disease. As I continue in research on the impairment of vitamin A metabolism, I am finding that alterations in vitamin A metabolism are causing many of the chronic diseases in this world. I will expound on this in later posts.
This is not written to diagnose or treat a condition, but only for informative purposes. Please consult your doctor before stopping or starting medications or supplements, and before making dietary or lifestyle changes based on the information provided. – Meredith Arthur, MS, RD, LD
Symptoms of Impaired Retinoic Acid Synthesis
It is possible for us to consume plenty of carotenoids from plants and performed vitamin A from animals in the form or retinyl esters, as well as from supplements (Vitamin A palmitate, Vitamin A acetate, etc), but not be able to convert it to retinoic acid in the body. This causes a functional vitamin A deficiency. Retinal helps in our visual cycle and so it plays its own unique role in eyesight, but retinoic acid is the active form of vitamin A that helps us to transcribe different genes. It plays a huge role in our bodies. It is especially important for growth. It is also needed for healthy skin, hair, eyes, and nails. We need retinoic acid to have a healthy immune system because it helps our immune cells to differentiate. We also need it for healthy blood vessels, red blood cells, and muscles.
Sometimes we assume based on symptoms that we are deficient in vitamin A, but in reality, it is hard to become deficient in this vitamin. Vitamin A is a fat soluble vitamin and it stays in the body a very long time. It can’t leave the body in the form that we eat it (beta-carotene or preformed vitamin A), and it can’t leave the body as retinol or retinal. It can only leave the body after it has been metabolized to retinoic acid and then broken down further by enzymes in the liver. After that it is excreted through bile acid into the intestines, and it comes out in the toilet.
If we aren’t metabolizing vitamin A into retinoic acid, it will build up in the cells of the liver that hold vitamin A, stellate cells. As the levels in these cells increase, the body wants to make sure levels don’t get too high and so it packages it into a carrier called retinol binding protein (RBP). RBP then complexes with transthyretin, a carrier for thyroid hormone (carries T4). This complex floats around the vascular system waiting for cells to take up retinol to be used as retinoic acid. When the body can’t make anymore retinol binding protein, and if vitamin A levels are still too high either from excess in the diet, or from not metabolizing it right, the body will start to increase the production of VLDL. It will package retinol into VLDL to be transported to fat cells for storage. This will eventually look like high LDL on laboratory work ups. Very high levels of RBP can actually cause insulin resistance which makes it hard for the fat that is on VLD to be taken up by the cells. The fat then spills into the blood and causes high triglycerides.
Symptoms of Vitamin A excess (all or some of these):
– iron deficiency with or without anemia
– high VLDL or LDL
– high triglycerides
– high blood calcium
– high alkaline phosphatase
– high Triglyceride:HDL ratio (greater than 3.5) indicates insulin resistance which can be from high retinol binding protein
– fatigue
– inability to lose weight despite calorie restriction
– poor growth (resistant to growth hormone treatments)
– elevated T4 (not free T4) due to more circulating RPB4 which is bound to Transthyretin
– keratosis pilaris
– thinning hair
– dry heels and elbows with thick white skin
– constant illness
– weak blood vessels that break easily
– bleeding gums
– blood clots
Late Symptoms:
– elevated liver enzymes
– diabetes (retinol binding protein 4 can trigger insulin resistance and metabolic syndrome)
– fatty liver disease
– obesity
Labs to definitely check:
– serum vitamin A
– retinol binding protein
Additional labs that are helpful to check:
– plasma amino acids (looking for high tryptophan, high serine, low ethanolamine)
– urinary organic acid (looking for low glutaric acid and also ketones)
– pyruvate/lactate (if lactate is low, LDH is likely impaired by oxalate – see below). If lactate is high, then NADH levels will be too low which will impair reactions dependent on NADH for energy. If lactate is too low, then NAD levels will be too low leading to impaired Vitamin A metabolism. Similarly, if Pyruvate is too high, NAD levels will be too low leading to poor vitamin A metabolism. There is a balance needed between pyruvate and lactate to normalize cellular processes that depend on NAD and NADH.
( ****THIS BALANCE of NAD/NADH PLAYS A PIVOTAL ROLE IN WHETHER OR NOT A PERSON CAN METABOLIZE VITAMIN A. The majority of my research has shown that NAD is being impaired in some way which alters vitamin A metabolism**** )
– spot morning urinary oxalate OR 24 hour urinary oxalate (to see if oxalate metabolism is the problem)
– CBC (looking for signs of zinc deficiency such as low lymphocytes, also looking at MCH, MCV, MCHC for signs of iron deficiency or folate or B12 deficiency, although the latter two aren’t directly related to this pathway, but I still like to see them)
– CMP (looking for elevated alk phos and elevated calcium, kidney issues, and liver issues)
– If MCH, MCV, or MCHC are low, definitely ask for iron studies (ferritin, transferrin, TIBC, % saturation) – I would actually ask for these anyway because iron deficiency anemia is the very LAST sign of iron deficiency in the body
– plasma zinc (zinc is needed for Vitamin A metabolism)
– ceruloplasmin (to assess copper status – low copper can impair iron absorption, and low iron can cause vitamin A to be trapped in the liver)
– B6 levels
– Thiamine levels won’t be accurate because they change based on what is eaten. Thiamine transketolase is a better measure, but is usually not covered by insurance
– B12 and folate levels (B12 and folate work together in a one carb transfer pathway. If folate is low, or if a person has MTHR polymorphisms, then glycine isn’t metabolized to serine efficiently, this can lead to high endogenously made oxalate which impairs LDH leading to decreased NAD and poor vitamin A metabolism.
– Lipid Panel (Looking for high VLDL, LDL, Triglycerides and a high Triglyceride:HDL ratio of greater than 3.5)
– Possibly genetic testing for gene alterations in glyoxylate pathway and vitamin A metabolism
ETHANOLAMINE and VITAMIN A (RETINAL) – This is the reason to monitor vitamin A metabolism in individuals with cognitive dysfunction. This is a hypothesis.
This is a hypothesis on nervous system manifestations of poor vitamin A metabolism, that is the inability to convert retinol to retinal, and then to retinoic acid. There are many ways by which we can impair our ability to metabolize vitamin A. Excess retinal levels in the body may be contributing to neurological decline. I believe that this is a contributor to Autism and neurological diseases.
(For 2q23.1/MBD5 deletion group — I know that our kids have neurodevelopmental disorders, but that doesn’t mean that they can’t have other health conditions that cause brain injury. I’m checking with the Elsea lab to see if MBD5 may be modulating some of the genes that involve these pathways.)
High levels of retinal can form a complex with ethanolamine to form A2E. This may decrease levels of ethanolamine containing ether lipids which may lead to neurological decline in and of itself. Low ethanolamine levels have been found in individuals with Autism and Alzheimer’s disease.
In addition, there is evidence that A2E stimulates microglia cells of the immune system to dysfunction in the eye resulting in macular degeneration. In Alzheimer’s disease, microglia cells have been implicated in neurodegeneration. Perhaps this is by an A2E mechanism as well. Individuals with Alzheimer’s disease typically do have higher levels of retinol binding protein 4 (some retinal is converted back into retinol and can be bound to retinol binding protein).
Perhaps Alzheimer’s and autism are vitamin A metabolism related diseases.
– At first I thought about liquid sunflower lecithin which is a good source of choline and also ethanolamine to help with low levels, but now I’m not sure about this yet because by doing this, it will increase ethanolamine levels. This may cause more damage by increasing A2E complexes while retinal is still high in the body and cause a huge flair in microglia cells
However, increasing overall choline intake is important because ethanolamine can be a precursor for choline synthesis. Low levels of choline will impair acetylcholine production. When acetylcholine is low, there will be impaired autonomic nervous system function leading to slow gut motility, GERD, constipation. The best dietary source of choline is egg yolks. Do NOT use liver without considering your total body vitamin A status. Liver is extremely high in vitamin A.
– Also address impaired vitamin A metabolism and fix areas that you are able such as low oxalate diet, B6, thiamine, and stopping melatonin or miralax (see below)
– If carotenoid levels are high, possibly go on a low carotenoid diet (but also will have to go on a low animal source of vitamin A diet as if there is evidence of retinol toxicity. This is because retinol is converted to retinal to some degree during impairment, but also it is highly likely as this metabolic pathway is restored, then retinal levels will increase)
Now for the various ways that we can alter Vitamin A Metabolism…….
OXALATE from plants or made from VITAMIN C or GLYCINE in the body can impair Vitamin A metabolism
Oxalate is a component of plants that is impossible for the body to completely break down. It is a poison. We absorb it at variable rates, but some of us make it in our bodies from vitamin C and glycine. Excess vitamin C becomes oxalate through direct breakdown and without enzymes. Usually this occurs in vitamin C over 2000 mg, but it can happen at lower doses as well. Never take vitamin C to “bowel tolerance” as this is likely actually death of the intestinal cells due to oxalate poisoning. Glycine is metabolized to oxalate in a B6 and thiamine deficient state, but when there is adequate B6 and Thiamine, it does not become oxalate.
When oxalate is high it impairs an enzyme called Lactate Dehydrogenase (LDH). We have to make some lactate to keep energy metabolism going. When the body is producing lactate, it also produces NAD+ which is what drives vitamin A (retinol and retinal) metabolism forward. What I found through a deep dive into literature is that Oxalate doesn’t directly inhibit alcohol dehydrogenase or retinol dehydrogenase or aldehyde dehydrogenase which was what I was searching for. Oxalate actually impairs lactate dehydrogenase (LDH) which lower NAD+ levels. I hypothesize that oxalate takes away the “energy” needed to drive those reactions forward by impairing LDH.
LDH is actually the last enzyme involved in the formation of oxalates. I believe that oxalate being able to have a feedback inhibition on LDH is a safety mechanism built into our human biology, but that it backfires and wreaks metabolic havoc on vitamin A metabolism and also energy metabolism.
Oxalate Pathogenic In Autism (Perhaps this is the connection! If oxalate impairs LDH, resulting in low NAD, then retinal levels increase. These complex with ethanolamine causing A2E and microglial activation resulting in neurological decline.)
2. Avoid excess vitamin C in excess (variable per person, but most kids don’t need more than 500 mg per day)
3. Ensure adequate levels of B6 and thiamine (Seizure meds tend to deplete B6 – ask doctor about 50 mg of P5P, active form of B6) – ask doctor before starting supplements
4. Avoid glycine supplements and also collagen powders as these are high in glycine
MIRALAX can become OXALATE and also can tie up alcohol dehydrogenase and aldehyde dehydrogenase that are needed for Vitamin A metabolism
Approximately 3.7% of PEG based laxatives are absorbed. This can be metabolized by the body to glyoxylate and then to oxalate especially in a B6, Thiamine, or Niacin deficient state. This will impair LDH, subsequently lower NAD, and thus impair vitamin A metabolism, but also overall metabolism. In addition the first two steps of PEG metabolism involve alcohol dehydrogenase and aldehyde dehydrogenase. They are enzymes used in vitamin A metabolism. So Miralax may tie up these enzymes for an unknown period of time. This would be an interesting study in a rat lab.
So many people with Autism take PEG (Miralax). PEG can also cause gut dysbiosis (see below for info on bacterial steal of NAD+) Perhaps many have A2E complexes of the essential ether lipid ethanolamine due to increasing retinal levels (this is a hypothesis).
PEG with weights greater than 4000 aren’t absorbed (1960 studies), but somewhere along the way a manufacturer changed it out for PEG 3500, probably due to cost, and the researchers felt absorbing 200 ml out of 5400 ml was no big deal.
I propose that 3.7% absorbed of the PEG laxative are causing a big deal. And the unabsorbed product is causing gut dysbiosis.
Ever notice that the label says not for use in children? Also to not use more than a week?
2. Ask your doctor for alternatives such as magnesium, senna, glycerin suppositories, etc.
B6 DEFICIENCY
B6 deficiency can cause increased production of oxalate from the amino acid glycine. Also, thiamine is needed to activate B6 into pyridoxal-5-phosphate. In addition, B6 and thiamine deficiency can prevent the production of NAD from tryptophan. High losses of B6 can occur when oxalate clearing through the kidneys is high. B6 is also depleted by birth control. Many seizure medicines deplete B6.
Solution:
– Ask physician about taking P-5-P
– Ask physician about thiamine supplementation
– Avoid glycine supplements or collagen powders which are high in glycine
Thiamine is needed to activate B6 to its P5P form. Thiamine is also needed to help pyruvate become lactate, which leads to adequate levels of NAD+. Thiamine deficiency can be caused by drinking too much coffee, tea, or caffeinated soda. It can also be depleted by the drugs lasix and metformin.
Solution:
– Talk with your doctor about thiamine supplementation (there are four forms, thiamine HCL, thiamine mononitrate, benfotiamine, and TTFD)
– Stop drinking so much caffeine!
– do not stop a medication without talking with your doctor
ZINC DEFICIENCY
Zinc is needed to metabolize vitamin A into retinoic acid. However, excess dietary zinc can cause a copper deficiency which can cause microcytic anemia and also neurological damage. Excess iron supplementation can cause zinc deficiency, so if you are on iron, then Zinc deficiency is possible.
Solution:
1. Ask your doctor to check ceruloplasmin and plasma zinc levels to evaluation zinc and copper
2. Ask your doctor about starting a Zinc:Copper Balance supplement. It should be about 10 to 15 mg of Zinc to every 1 mg of copper. THe amount of zinc and copper you need may need to be adjusted.
IRON DEFICIENCY
Iron deficiency impairs the mobilization of vitamin A from the liver. This can lead to a functional vitamin A deficiency, and excessive liver stores of vitamin A. The functional vitamin A deficiency worsens iron deficiency because retinoic acid, active vitamin A, down regulates the production of hepcidin by the liver, but also adipose tissues. Hepcidin increases. Hepcidin essentially locks iron into the cells of the intestine or liver so it can impair iron absorption, but also can lead to iron toxicity in the liver. (Never blindly supplement iron. Always ask for iron studies.)
Once liver capacity for vitamin A is reached, the body will increase cholesterol production in efforts to send vitamin A to fat cells for storage. If there is not enough choline to make cholesterol, fat will accumulate in the liver causing fatty liver disease. This can occur with or without iron deficiency. There are many other factors that contribute to poor vitamin A metabolism beyond iron deficiency.
Also, iron deficiency causes slowing of TCA cycle and build up of citrate which becomes a building block for triglyceride production. Less energy is also produced from food eaten because of this slowing of the TCA cycle that makes ATP in the body.
Sometimes iron deficiency that isn’t responding to iron supplementation is actually copper deficiency. If you have been on iron a long time, you should have your copper levels checked (ceruloplasmin) due to high dose iron supplements impair copper absorption. Once copper is low, then iron can’t be absorbed.
Vitamin A can’t be mobilized during iron deficient state
– Ask doctor to check iron studies (ferritin, transferrin, TIBC, % iron saturation)
– If iron deficiency is found, then don’t dose iron every day. This will increase hepcidin levels and because retinoic acid is low, hepcidin won’t be regulated well and iron deficiency will worsen.
– Instead ask your physician about low dose iron supplementation such as 40 mg of iron bis-glycinate every other day in the morning. Dosing in this manner will not increase hepcidin as much. This iron can also be paired with vitamin C (but not more than 250 mg) to enhance absorption.
H2 receptor antagonists have been shown to impair the conversion of retinol to retinoic acid by altering NAD+ levels in cells. One of these studies said that famotidine didn’t cause this, but another study did, and so I don’t feel comfortable with famotidine (Pepcid). Also these medications can cause iron and copper deficiency leading to iron deficiency which worsens vitamin A mobilization from the liver.
1. Wean off of H2 receptor antagonist if possible with your doctors permission
2. Possibly change to a proton pump inhibitor (although these still can cause iron and copper deficiency)
HIGH DOSE MELATONIN impairs Vitamin A metabolism
(This could pertain to individuals who take more than 5 mg per day. Also anyone who doses melatonin multiple times a day. Monitor yourself for symptoms of overdose such as headache, hypotension, hypertension, drowsiness, vomiting, alopecia.)
Melatonin overdosing is another possible mechanism by which vitamin A metabolism can be impaired. Melatonin is metabolized in the Kynuric pathway which uses the enzymes alcohol dehydrogenase and aldehyde dehydrogenase. These enzymes are also used in vitamin A metabolism. Large doses of melatonin could compete with Vitamin A for metabolism resulting in a retinoic acid deficiency. Alopecia and dermatological manifestations of melatonin overdose could actually be related to retinoic acid deficiency.
In addition, when metabolizing large amounts of melatonin, NAD is used which may contribute to low cellular levels of NAD. This can result in impaired energy (ATP) levels leading to the symptoms described in melatonin overdose such as fatigue. This could also cause buildup of lactate resulting in lactic acidosis which would account for the vomiting seen in melatonin overdose.
Solution: Don’t go over 3 mg of Melatonin per day for kids. Work with a sleep psychologist on sleep hygiene.
GUT DYSBIOSIS impairs Vitamin A metabolism
Another possible mechanism by which vitamin A metabolism can be altered is when NAD levels are low due to gut dysbiosis. It is possible for pathogenic bacteria to “steal” the NAD that is needed to metabolize vitamin A.
Solution: Start a probiotic. Preferably a well researched probiotic such as MegaSporeBiotic. I’m working with microbiome labs (MegaSporeBiotic). They know that their product lowers a toxin that is produced by bad bacteria and so it should lower NAD+ steal. It is clinically proven. However, Kara, one of their dietitians, is going to help me research other bacteria strains that they know don’t steal NAD.
FERMENTED FOODS CAN IMPAIR VITAMIN A METABOLISM
Fermented foods, tea, soda, and coffee contain acetaldehyde. Acetaldehyde metabolism uses up NAD+ resulting in less NAD+ available in the conversion of retinol and retinol to retinoic acid. It also uses alcohol dehydrogenase and aldehyde dehydrogenase that are needed for Vitamin A metabolism. Fermented food: Kefir, Kombucha, sauerkraut, yogurt, etc.
Alcohol actually causes the same problem. It uses up NAD+ and also ties up enzymes so that less vitamin A is metabolized to retinoic acid.
Interestingly, foods high in acetaldehyde are avoided on a low histamine diet because they tend to “release” histamine. Perhaps this is because retinol triggers mast cells to release histamine.
1. Avoid these beverages and foods if you know vitamin A is not being metabolized
Tea
Coffee
Soft Drinks
Kombucha
Yogurt
Vinegar
Fish products such as fish sauce
Fermented mushrooms
Fermented soy products
Pickled vegetables
Canned vegetables
Kimchi
KERATOSIS PILARIS – how to deal with this itchy skin condition and also keratin building up and causing crusty heels and elbows
If you have this skin condition, consider having your vitamin A levels checked before allowing a doctor to prescribe vitamin A supplementation or even topical vitamin A creams. It may not be a deficiency at all. You may have plenty of retinol in the body, if not too much, but may be low on retinoic acid. I propose that this “vitamin A deficiency” associated skin disorder, Keratosis pilaris, is actually retinoic acid deficiency, and not necessarily preformed vitamin A or carotenoid deficiency. Consider getting your vitamin A levels checked and look at your diet and medications to evaluate if you have inhibitors of retinol and retinal metabolism due to NAD+ depletion or due to tying up alcohol dehydrogenase and aldehyde dehydrogenase which are used to metabolize vitamin A.
Solution:
Check with your doctor about using topical lactic acid lotion – Lactic acid lotion is thought to help decrease keratosis pilaris by “dissolving” the keratin plug. I hypothesize that it increases lactate, a product of lactate dehydrogenase reaction, within local skin cells. This increasing amount of lactate is then converted to pyruvate and then back into lactate which increases NAD+ which helps to drive retinol metabolism forward to retinoic acid. Then, retinoic acid can then help skin to form normally without excess keratin production.
Use EWG skin deep database to avoid lotions that have excess toxins.
Zoey was having a good time in Sunday school this morning. She was alternating between coloring and trying to get the “emergency supplies” out of her backpack. These include emergency fruit snacks, a bolus syringe, mic-key extension, thickener for water, and medical gloves. She was cracking up when I said, “Stop getting out the supplies. There is NO emergency here!” It’s funny interactions like these that help her stay happy while doing an activity she doesn’t excel at.
The next activity is always the hardest for her. She has to sit on the carpet to hear the Bible story of the day. This gives her anxiety because she is anticipating the fun video that our wonderful Sunday school teacher usually shows after each story. Videos gives an engaging auditory and visual experience that appeal to Zoey more than just an oral presentation. Oral stories, quite frankly, bore her. The wait for this reward is so hard, but she knows it is coming at some point.
Zoey looks like she is so interested in this black and white story during Sunday School Bible story time, but she actually scooted forward to try to steal the iPad from the teachers lap! Hahaha!
Today I whispered in her ear as she fussed, “Hold on Zoey, in just a few minutes you will see the video version.” I softly sang song lyrics from her favorite songs in her ears over and over to calm her. Today our teacher bought some really neat black and white cartoon illustrations to go with her oral presentation on the birth of Jesus. Zoey didn’t even look at because she had her eyes closed in protest, while making snoring noises, When the story time was over, she expected the amazing recap video. There was none. None. I felt a switch go off in my little girl who was tucked in my lap. She started to grind her teeth.
When I got her attention, the look on her face was, “Mom, I’m trying to hold this together, but I’m truly upset about the video.” Luckily, the craft activity involved scissors! These dangerous craft tools are Zoey’s favorite. She loves waving them around and hearing me say, “That’s dangerous. We don’t wave around scissors.” One of her church friends said, “That really could poke someone’s eye out.” Zoey, looked at her, and immediately stopped waving them and started cutting with assistance! Yay for peer pressure and for Zoey responding to it! We cut out five pieces from the manger scene, and then pasted them onto black paper. However, the whole time she was grinding her teeth, and I believe she was thinking about how the video didn’t happen.
I noticed her anxiety escalating and took out the emergency fruit snacks. This helped a bit, but then our package of fruit snacks was gone! Our Sunday school teacher noticed the fussing, and got out the Sunday School fruit snacks. (My hero!) It helped for about one minute while Zoey chowed down. However, Zoey freaked out when they were gone, too, and started tearing up her craft! She then got up and tried to get more fruit snacks from the Sunday school room cabinet. The assistant, thankfully, blocked the way. This made Zoey more frustrated. The crying and screaming got worse, so we left. Technically it was time to leave anyway, but I hate leaving when she is upset because if she was screaming to escape the situation, I just reinforced that behavior.
After that, Zoey refused to wear shoes, and I gave up. We saw a few of my friends in the fellowship area and I did a short, “We’re having a day,” but didn’t bother trying to stay for fellowship time. I try not to say, “bad day,” because giving it a negative label makes Zoey escalate more.
So what set Zoey off today? I had to work some Behavioral Analysis magic and think about it a bit. It probably is obvious to you because you read about the meltdown after I figured it out! Ha! It ended up being a video, or lack there of a video. It seems silly that this all started because of the lack of a video. None of the other kids in her class were phased by the change in the usual flow of Sunday school. The difference between Zoey and her peers are numerous (non-verbal, problems swallowing, fine and gross motor delay, short stature, has a g-tube, etc). In fact, one boy today asked why she speaks like a baby. I replied, to lighten the mood for Zoey, “She doesn’t. Her favorite character is Curious George. She can speak monkey, not baby.” Zoey exclaimed in a sing song tone that she agreed. The other kids then focused on Curious George, something they all agreed that they liked as well, instead of Zoey’s differences.
However, Zoey does have one very big difference, Autism. It doesn’t ruin Zoey’s whole day, but it can ruin moments of it. Today, Zoey had what seems to most people a “bad day”. Unlike a neurotypical kid, Zoey’s “bad day” lasts only as long as she is in that particular environment or situation. As soon as she is back in a familiar situation, her “bad day” goes away.
Zoey with all her BooginHead PaciPals! These friends help her through life in so many ways. She uses a pacifier to clear food from her nose, to block her mouth so her CPAP mask works better, to be her best friend throughout the day. The BooginHead company gave Zoey a care package with extra elephants and all the friends available, when they found out she is their biggest fan!
So today, it seemed as though we were struggling quite a bit at church, and we were, but once we got in the car and listened to some good music on our way home, Zoey’s whole demeanor had changed. Her big sister carried her to the car because she wasn’t wearing shoes, and Zoey laughed as she put her Booginhead PaciPal stuffed animal on Mya’s shoulder. Mya said her usual response to a PaciPal on her shoulder, “Don’t put your (animal here) on my shoulder. It’s weird, and gross, and makes me feel uncomfortable. You don’t care about my feelings.” This familiar interaction started some crazy giggling leading to a calming process.
Once Zoey was buckled in, and the radio turned on, the teeth grinding stopped, the tears completely dried up, and when we got home she was belly laughing. Me? Not so much. My silly neurotypical brain holds onto a bad moment and lets it ruin the whole day! I’m trying to be more like Zoey. I need to leave the “bad moment” behind, dry my tears, and belly laugh. Lesson learned, Zoey. Thank you.
The last day of Vacation Bible School?! Usually, I’m so exhausted by the end of VBS that I am glad for the last day, but today I actually feel sad. I’ve enjoyed seeing Zoey experience God in a new way, and I’ve learned quite a bit this week.
Our morning went great and Zoey was excited to find our crew heading to snack first! She had been signing “please eat” since yesterday afternoon when I made gluten free vanilla cupcakes with white chocolate covered pretzel roofs. Zoey can’t eat regular chocolate or cocoa powder because she absorbs too many oxalates, which cause her to develop kidney stones. She soon was on a sugar high which is the best time to be around Zoey! Her crew mates had her doubled over in laughter when I taught them the sign for “like” and “don’t like”. We made up things we don’t like to make Zoey laugh. For example, I said and signed, “I don’t like dirty napkins,” and tossed my napkin in the air. One friend said, “I don’t like stinky diapers!” Zoey’s giggles were uncontrollable! All the kids were cracking up at her contagious laugh!
The happiness continued in Bible Adventure! After learning about how the Israelites built an alter of remembrance to celebrate God’s goodness, the leader handed out black rocks and paint pens and told us to have our crew members name one thing that God has done for them that is good and write it on the rock. I listened as the kids in our crew answered with age appropriate responses such as, “God made the sky, God made the trees. etc”. I turned to my daughter, who will be eight in October, and asked her, “Zoey, what has God done for you that is good?” She rubbed her tiny hands together, signing, “Wash.” I was puzzled for a second and then it hit me. I asked her, “Zoey, are you saying God sent Jesus to WASH your sins away?” She laughed, which always indicates I am right! I held the paint pen in her hand and helped her write the word on her rock. My amazing daughter has a deep understanding of God’s amazing goodness!
Zoey did have a meltdown later in the day because we were sitting close to the snack room during Missions, and I sort of agree with her protest. Cupcakes are good! We should be able to go back for more! Hahaha! However, I wasn’t really upset with her crying and whispered a prayer for her to feel better about not having snack. She continued to cry a bit, but I just kept thinking back to her rock with the word wash on it. Overall life was still good today, and when life is good, God is good!
So just to make this clear, Zoey has never been “taught” the question, “What did God do for you that is good?” She didn’t answer that question from rote memory. She answered it spontaneously with knowledge that has been imparted to her over the past four years. Zoey has been in the 2&3 year old Sunday School class since she was three years old. I can’t believe it has been that long! I keep thinking there is no way she has been in the same class that long, but I see kids each Sunday that have cycled through that class with Zoey and are now entering first grade! I’ve been holding her back due to lack of maturity and her developmental delay. Our 2&3 year old Sunday School teacher is amazing! She has been delivering God’s word to Zoey patiently throughout all the paper tearing, peer hitting, and snack meltdowns. Obviously those lessons have penetrated Zoey’s soul! She knows that God’s most important, good act towards us was sending his only son, Jesus, to die for our sins and “wash” them away!
I’ve been praying for God to reveal to me when Zoey is ready to move up into a more mature class. God sent me a sign today of Zoey’s readiness to move on in life. On a solid rock, we wrote one single word, and on Christ the solid rock Zoey will stand! Praise God for this good life. When Life is Good, God is Good!
(A picture of our “rock” is coming soon, hopefully! I was sad to find out that Zoey’s rock didn’t make it back to use from our crew leader’s bag! I wanted to keep that rock forever! If we can’t find it at church, Zoey and I will be reliving this moment and making another rock. This was an amazing moment in Zoey’s life that needs an alter of remembrance just like the Israelites in Joshua Chapter 3-4, even if it’s only one stone high!)
Update! At 6:00 PM today, one of our dear friends and the music pastor of our church presented to me Zoey’s memorial stone! He went on a hunt for it and found it! What a wonderful friend and brother in Christ! He’s also an amazing musician. Check out Travis Ham’s music here https://open.spotify.com/artist/0W57I3tQxLHXyC0vM2cfDq
Zoey’s memorial stone to remember that God is so good that he sent Jesus to wash our sins away!
Zoey was so amazing on Day 2 and 3 of vacation Bible school that I woke up this morning expecting everything to go great! I asked God to reveal to me what he wanted me to learn that day from the theme “When Life is Sad, God is Good!” I thought, I can easily write about sadness!
We have been through so many sad moments in the past seven years. I remember crying on the floor in my closet, “Please, God, just help Zoey to grow!” She was diagnosed with failure to thrive when she was three months old, but we were able to help her grow by visiting a gastroeneterologist and trouble shooting her nutrition plan. I bawled tears as I had to stop nursing her, feed her with a special bottle at a special angle, and fortify my breast milk to 27 calories per ounce. That was not how I wanted God to answer my prayer! I wanted her to thrive off of breast milk alone and without bottles. This was truly a sorrowful moment in my life.
I also cried out to God one day while in the bathroom with Zoey during poop duty, “God, just help me to be happy!” God’s answer was immediate! Zoey signed “Papa” and the grabbed her tiny little nose for the first time and made a nose blowing sound. She was imitating my husband’s loud nose blowing sound that made her laugh. This made me crack up instantly. Gotta love God for being so good to turn a sad moment into a jolly one!
And then there is my chronic sadness that I refer to as chronic sorrow. Chronic sorrow is a continual sadness that never goes away, but I don’t think it is like depression. Depression, to me, means that I no longer want to interact with the world around me because my life circumstances have come to a point where living life is impossible. With chronic sorrow I can still find joy in various moments of my life, but then out of the blue I will be saddened by the fact that Zoey will forever be dependent on people around her and will always have to take medication for her body to function normally. My heart is broken for her.
So because I am so familiar with sadness, I thought maybe I could talk with the kids in our crew about different times that I had been sad or that Zoey had been sad. I was trying to think of a time Zoey was sad during her multiple surgeries, but she has never been sad after any of them. Sometimes she was a little scared, but never sad. In fact, she was able to belly laugh after having major palate surgery. She amazes me. Other than being sad when her food is gone, Zoey is rarely sad about all of the hardest parts of her life. I became a bit disappointed because I didn’t think we would have a way to witness to our kindergarten buddies.
Zoey, apparently, had other plans. Today she was SAD. From the moment we sat down for the opening songs and praise, she turned into me and started to wail. She cried during Bible Adventure because she earned a package of fruit snacks for trying to answer a question, but when the fruit snacks were gone, she was devastated. She cried on and off during Imagination station and laid on the floor covering her ears because she broke a pencil and accidentally kicked a friend with her hard orthotics. She cried during Missions for an unknown reason and we finally just went into the bathroom and sat on a bench so we wouldn’t disturb the other kids. She cried during Games despite me trying to cheer her up. It was insanely hot though! I wanted to cry, too.
Throughout all of these classes, our crew members asked why is she sad. With shame I answered, “She is sad because…
her fruit snack prize is gone
she broke the tip of her colored pencil
she doesn’t want to give away the bag of snacks she prepared for people who have no food
she wants to have my cell phone
she wants her favorite music video by Jamie Grace to be on the screen up front and not the VBS songs
she wants her orthotics off and I said not until snack time
she doesn’t want to have snack last today.”
Finally, as we were waiting for snack, and Zoey was crying in my arms, I whispered a prayer in her ear, “God, please help Zoey to not be so sad as we go to snack time. Help the snack to give her energy to be happy and give her some laughable moments.” We entered the snack room. I took her shoes and socks off and asked the other crew members if they wanted to smell her stinky socks. They played along and made gross faces. Zoey cracked up! Zoey and I pretended to smell her stinky feet and giggled. We chowed down on chips, salsa, and cheese and she truly had an attitude change. She didn’t cry during the closing song and praise time, but cuddled close to me. Sheesh! Next time I won’t pray at end of the day or limit it to snack time! Lesson learned!
The best moment was when she noticed the cross drawn on my hand and pointed at it. She then pointed at her own cross and looked up at me. I whispered, “We have this cross on our hands to remind us that even when we are sad, God loves us.” We need to remember Psalm 34:18, “The Lord is close to the brokenhearted.”
Zoey and I have matching crosses on our hands to remind us that God loves us even when life is sad!
After prompting from the leader on stage, I asked Zoey, “What makes you happy?” She signed upstairs, where she hangs out with her sister. I said, “You know what makes me happy, Zoey? Hugs from you.” She turned around and hugged me! It made all my sadness and shame that I felt that my daughter was being sad for trivial reasons melt away. I realized that God is near to the brokenhearted no matter what the cause of their sadness.
Thank you, God, for revealing to me that even when Life is Sad, whether from circumstances that seem trivial, or from major catastrophic changes, God is good.
To be honest, today I had planned to take a break from being Zoey’s helper at vacation Bible school. I’ve learned over the years that taking breaks when you have a child with Autism is important to maintain your sanity. However, I actually was worried that this abrupt change from mom to aid would result in Zoey acting out. I didn’t want to rock the boat. Plus, I’m enjoying interacting with all our kindergarten crew buddies.
Change. It makes a difference, obviously! Hahaha! Zoey’s wonderful night nurse had been following my plan to keep lights low before bedtime for a while, but suddenly Zoey wasn’t sleeping as well for her. Last night I did a little trouble shooting which revealed that the night nurse had the overhead, bright light on in Zoey’s room right before bed. She told me Zoey seemed to settle down fine after the bright light was switched off. For Zoey, this is similar to playing a video game before bedtime, and disrupts her sleep. So last night was a rough night. Zoey slept fitfully and woke at 4:00 AM. She was banging on the door and needed repetitive guidance by the nurse to get back to bed. Finally after completing my daily Bible study, I prayed for God to help her rest, and she fell back to sleep around 6:00AM. Just one tiny change in the type of lighting in her room resulted in a big change in her sleep cycles.
Zoey’s rough night of sleep resulted in me having to change her morning routine! This is a catastrophic event in the life of a child with Autism. To maximize her sleep, I woke her up fifteen minutes before it was time to go. She was expecting her usual routine ,and when I changed it up, she was not enthusiastic. She was fussing a bit as I pulled her from the car in the church parking lot. I said, “Zoey, guess what?! I know that I changed your morning routine. You went to the bathroom, dressed before having breakfast, and ate breakfast in the car.” She signed and aggressive version of “different”. I replied, “Today’s VSB theme is when life changes, God is good. Look at that. You’ve already experienced a change today by doing things out of order, but God is still good.” We then practiced signing, “When life changes, God is good.” She stopped fussing and we had a pretty amazing day! Absolutely no meltdowns! She had only a few minor complaints where she laid down on the floor and rolled around in mild protest.
The highlight of my day today was when the VBS volunteer on stage lead the entire auditorium in prayer. The kids were to fill in the blank with the name of a person who needs to know that when life changes, God is good. The kids were a bit confused and didn’t shout out names in the middle of the prayer as they should, but actually after. I heard, from across the auditorium, my son’s voice shouting, “Zoey!” I replied, “Yes!” He beamed at me and we air high-fived! I love that my son realized that Zoey’s life is continually changed in small and big ways and is actively praying for Zoey to know that God is still with her. God’s faithful love for us does endure forever.
“Give thanks to the Lord, for he is good! His faithful love endures forever.” Psalm 106:1
This year Zoey accumulated another genetic related diagnosis. Zoey has Non Classical Congenital Adrenal Hyperplasia. This recessive genetic mutation causes her to not make cortisol, a natural anti-inflammatory hormone, efficiently. Instead she makes too many androgens. This caused her to have early signs of puberty, excessive, male like hair growth, and aggressive behaviors. This condition could stunt her growth further (she already has short stature from her two other genetic syndromes). She has been extremely fatigued from how little cortisol she can make at baseline due to these mutations. Luckily, God created the inquisitive human mind. Doctors and researchers have learned how to treat this condition with oral and inject-able steroids. Zoey is feeling much better after only two weeks of therapy! She is even hugging friends again. It’s been an entire year since she felt like hugging anyone.
Looking back on today, I think it would have been fine to have Zoey’s aid attend VBS in my place. God is so very good that this small change wouldn’t have made a difference in Zoey’s day. I would just put my hands together and pray for these life changes to be under God’s control, just like this morning when praying for her to fall back to sleep after a change in her routine caused a problem. I’d add to that prayer how thankful I am for his goodness, his enduring love, and all that he does daily to sustain Zoey and make changes in life so much easier on her. When Life Changes, God is Good!
Thanks to all of Zoey’s wonderful friends and family for praying for a smoother day at Vacation Bible School today! God most definitely answered, “Yes!” Zoey had only one meltdown during the missions portion of the program (more on that later). She had a few lay down on the floor episodes where she fussed a bit, but she recovered well, AND she had NO post VBS meltdown. She was completely quiet on the way home, and was able to participate in speech therapy immediately upon arriving at our house. Also, she scored a 75% accuracy using a communication board with her speech therapist! Praise God for such a great day.
Things are still going good right now . As I right this, she is upstairs sharing a big, comfy desk chair with her big sister, Mya, while watching her play video games. I know that seems a bit boring, but she enjoys it, and it will keep her in one place long enough for me to share our take on VBS day two’s theme, “When Life is Scary, God is Good!”
When your child has Autism, you know what they are scared of just like when parenting a typical kid, but sometimes, without warning, their fear catches you off guard. Today’s only meltdown was because of one of those unexpected fears. Our mission today was to decorate a label, place it on a water bottle, and donate it to the local fire department. The bottles of water will be handed out when fireman have to come to the rescue. Zoey loved making the water bottle with my assistance, and hers was the first one in the donation box. What can I say? She likes to get a task accomplished quickly, or maybe just get it over with so she can move on to the next thing! Ha!
We left the room and were the first ones to sit behind the designated line in the carpet and wait for the fire marshal and fireman to speak with us about what they do. While we waited, I sang the Signing Time song “In My Neighborhood”. Here are some of the lyrics:
The people in my neighborhood Are one big family I watch out for them And they look out for me Be careful, be safe But just in case POLICE OFFICERS, FIRE FIGHTERS, A DOCTOR, or a NURSE They help me if I’m hurt They help me if I’m hurt
I thought for sure that this song would prepare Zoey for what lay ahead and calm her fears. She loves Signing Time songs. It’s actual quite painful to sing since have cervical fusion last November. Singing makes my throat swell and it feels like someone is tightening a scarf around my neck. I save songs for times when I think Zoey really needs extra peace and this was one of those times.
She actually was quite calm while the fire marshal explained, “We never want you to be scared of a fireman, and run and hide from him. He or she will be wearing this suit, and even though it is scary, you should always go right up to them if you are in a fire. And remember, when Life is Scary, God is Good.” How true that is especially in a fire. God is so good to give firefighters the creative thinking ability to construct a suit that allows them to save people from fire, while keeping themselves save from the harm of smoke and flames!
I was contemplating this thought when one of the crew leaders volunteered to dress in the fireman’s outfit. As he slipped into the pants attached to the boots, Zoey started to fuss. Then the jacket brought on a shriek. I started to whisper the “In My Neighborhood” song in her ear again, but as soon as the helmet and mask were placed on the crew leader’s head, she screamed in terror and turned away from the presentation while hugging me desperately. All the other kids noticed Zoey reaction. Later, in games, several of the kindergarten kids came up to Zoey to check on her. I told them how this was Zoey’s first time to see a fire fighter. A few of those friends commented about how they were scared the first time they saw a fireman, but this was their second, third, or fourth time to see a fire fighter up close. I loved their compassion and attempt to ease Zoey’s fears. God is good for prompting them to interact with her.
I had my own scare today. I was packing up Zoey’s bag during snack time and I allowed her a little freedom to roam the room. I was keeping an eye on her as always. She was walking back towards our picnic blanket when she turned and took off as fast as she could on her tip toes towards the kitchen. I had no idea if the workers in there would be ready for the tornado coming their way. I envisioned piles of cups of icecream melting on the floor. I jumped up and made a mad dash after her….and…slipped on the blanket! I crashed to floor landing on my right hip, smacked my face on the ground, and jarred my recently fused neck. I thought, “Oh no!!! I damaged my neck, broke my hip, and probably bruised my face!”
I didn’t have time to lay there and continue to contemplate the pains shooting through my body, but got up to find Zoey. Our favorite Sunday school teacher had already caught my wind storm trapped in a cute, fleshy vessel on the move. I explained my fall, but honestly, I don’t think I was hurt too badly. I just had some bruises on my legs, and not even a bruise on my face! Bummer! That would have been a good picture for this blog! Ha! Anyway, God is Good because this could easily have ended with me being bed ridden for months.
That leads me to my biggest fear. I fear that someday I may not be able bodied enough to care for Zoey, or that I will die and go to heaven while she still very much needs me. Life is scary when you have a child who will always need you, and who will never completely grow up. One of our crew members today asked, “When will Zoey grow up?” I replied, “Someday,” because six years old is a bit young to contemplate the life long effects of genetic syndromes and Autism.
In reality, though, Zoey won’t grow up. Consequently, I do everything in my power to maintain my health and avoid harm. I allow plenty of room between my car and cars in front of me while driving. I check my blind spot, rear view mirror, and side view mirrors with an almost an obsessive compulsive like manner to defensively drive and avoid accidents. I exercise daily, but take care not to do any type of exercise that could cause an injury. I eat healthy to avoid chronic disease because I need to make sure, if I have any say in it, that I live a long, healthy life, and that I am able to care for my daughter.
However, no matter what I actively do to alleviate this fear of failing Zoey, I have remained scared. Today, at VBS, I realized that I need to pray for God to take this fear from me. He knows the future, and so far in my life, His loving kindness has never failed me. So many friends and family prayed for Zoey to have a better day today, and God took care of that. He is so very good! Join with me and pray for Zoey to always be cared for by those who love her even when I am no longer able to be her primary caregiver. Help me to stop being so scared of her future. Help me to remember, “When Life is Scary, God is Good!”
Today was Zoey’s first day, ever, of Vacation Bible School. At 7 years old, she is supposed to be entering 2nd grade. I thought it would help her fit in more to be with kids who are of similar height, and asked for her to be in the kindergarten class. I saw today that maybe that wasn’t the best idea. The sweet kindergarten kids in our crew asked several times, “What’s wrong with Zoey?” At first I said, “Nothing, she’s very healthy.” However, these kids couldn’t be fooled and the asking continued! Hahaha! Zoey wasn’t amused though and her anxiety levels were on the rise. She was fussing constantly and chewing her chewy necklace extra hard.
Today’s VBS theme was, “When life is unfair, God is good!” The kids were to learn that despite times that they experience unfair circumstances, God is good. Some of the unfair circumstance that were given were superficial such as, “So-in-so lives next to Universal Studios and gets to go every day. My friend just got a brand new I-phone and mine is two years old.” It hit me today that Zoey’s life, however, is truly UNFAIR.
Zoey has 2q23.1 microdeletion syndrome (due to a macrodeletion of 7.29 MB of DNA on chromosome 2) , White-Sutton Syndrome, Cerebral Palsy, Autism, Dysphagia, Sleep Apnea, Non Classical Congenital Adrenal Hyperplasia, insomnia, gastroesophageal reflux disease, chronic constipation, impaired speech, fine motor delay, gross motor delay, a g-tube, orthotics, glasses, and c-pap machine. Life is unfair for her!
About 1.5 hours into VBS, after the umpteenth attempt at finding out “What in the world is wrong with Zoey”, I asked Zoey if I could share a few things that are different about her. She signed, “Yes.”
Our kindergarten friends weren’t ready for the laundry list above, but I told them basically that Zoey has Autism and it makes it a bit harder for her to have fun. She is scared by loud noises, too many people, and changes in routine. VBS is a nightmare for Zoey! Instead, I pointed out and explained the physical things that our new friends were definitely aware of because they could see it.
It’s UNFAIR for Zoey that she can’t drink water like you. The water you drink goes into your belly. When Zoey drinks water with her mouth it goes into her lungs and makes it so she can’t breath. God is good, though, because he inspired doctors to create a g-tube that is like having a straw that can go straight into her belly.
It’s UNFAIR that Zoey can’t talk the way you can, but God is good! Zoey can use sign language to communicate and soon will have a computer that will talk for her when she pushes buttons.
It’s UNFAIR, that Zoey can’t run, jump, and spin during games, like you. But God is good for inspiring people to create super shoes that can help Zoey learn to move better. Someday she wants to play soccer.
Zoey seemed to cheer up after this exchange of information. She enjoyed playing with kinetic sand during Bible story time, and laughed hysterically at Simon Says during game time. She was the only kid laughing! She had me giggling because her laugh is so very contagious! A few friends nearby smiled at her laugh and I bet tomorrow she will have them all giggling.
She was even quite happy at the beginning of the closing ceremonies after we pretended to be water buffalo with big stompy feet on the way to our seats in the auditorium. She was super excited to see her older brother being a free spirit, as usual, and wandering in the front of the church. She giggled with glee as he hugged her, and Zoey didn’t even try to smack him!
During the closing ceremony the leader asked, “Have any of you ever felt that life was unfair or experienced something unfair?” Zoey signed, “Me!” That shocked me! My sweet girl is starting to realize that her life is so very much UNFAIR. When kids talk to her and she can’t communicate back because they don’t know her language, she feels the UNFAIR. When she can’t hold hands with a friend without me helping to hold their hands together (she loses grip), she feels the UNFAIR. When she can’t roll the pretty paper around a straw to make a bead, she feels the UNFAIR. She is realizing how very different she is and how UNFAIR it is. My hope is that I can continue to encourage her and remind her that God is good, and point out the good side of each unfair thing that has happened to her.
By the end of the singing, Zoey was starting to meltdown. She lay on the floor screaming and I laid down next to her because it often helps. I whispered in her ear, “I love you even when you’re upset. I love you even when you’re screaming.” She sat back up and I held her in my arms. I wish I had added, “God loves you when you are screaming,” but I’m sure I’ll have a chance tomorrow!
I had just calmed her down when everyone responded to a question that I wasn’t able to hear because Zoey was crying. The response was a huge shout. She covered her ears in agony and started to shriek again. She cried for the next five minutes until she saw her big sister who gave her a koala bear ride. Gotta love big sisters for saving the day! At least almost…
Once we got in the car the meltdown escalated to a shrieking rage for thirty minutes! I was really upset by this because I almost felt like VBS was a form of torture for her, and I was thinking I wouldn’t take Zoey back to VBS tomorrow. However, one of my Ausome mom friends helped me realize that she had been holding back the WHOLE time! She was venting all her frustrations in the car on the people she knows can handle it. She had TRIED to keep her autistic like behaviors under control for over three hours! I love this girl for that! I’m so glad she had the chance to vent to her family how very unfair her life is.
So will I take Zoey back to VBS tomorrow? I believe I will because despite all the UNFAIR circumstances Zoey encounters tomorrow, she will grow and learn from this experience. By the end of the week, she will know that when Life is Unfair, God is Good!
An intriguing scene in How To Train A Dragon involves Hiccup and his father, Stoick, having a fight about Stoick’s preconceived expectations of his Viking son. Stoick expects Hiccup to be just like all the other Vikings. He tells Hiccup, “…which means you walk like us, you talk like us, you think like us. No more of…this.” With the word “this”, Stoick gestures at Hiccup with two hands. Hiccup replies in a disgruntle tone, “You just gestured to all of me.”
My insightful thirteen year old daughter brought this scene to my attention when I tried to emphatically explain why I was so bothered by an event that happened at the grocery store that morning. Here is how the event played out and how “all of me” became something of importance.
It was Wednesday morning and I grabbed Zoey’s favorite Preschool Prep board books, reusable grocery bags, and Zoey and packed them into the car. We were going shopping and doing some school at the same time. It was time for a color hunt and a number hunt! Zoey was excited and bounced her legs up and down in her car seat as we approached Sprouts Farmers Market. She was just as enthusiastic as I picked her forty pound body high in the air to get her into the grocery cart seat. At seven years old, I still have to coach her on how to get her feet through the leg holes. It was a bit of a struggle, but we managed to get going. We were both happy, healthy, and in great spirits.
As we walked through the store there was a predictable theme that repeated itself. First, I would ask Zoey to point to a color in her Meet the Colors board book and then we would find it along the shelf and pretend it was jumping into the book. Then we would find a number from her Meet The Numbers board book and pretend the number jumped onto the shelf. After this, Zoey would try to reach into the basket behind her and pull out something to open. I would patiently say, “Hands in front. We don’t open food in the store. You know how messy an eater I am. It will spill everywhere!” Zoey would then scream in dismay, cover her ears, and rock. I would sing a cute preschool song and she would immediately stop screaming and be happy again. We repeated this cycle throughout the entire store. I was pretty much engaged with her the whole time. It was a typical shopping experience with my sweet girl until we encountered a well meaning older woman.
“Do You Believe In God?”
She briskly walked up to me and stood one foot in front of me right next to Zoey. She didn’t acknowledge Zoey, nor introduce herself, but immediately asked, “Do you believe in God?” I replied, “Yes.” She poignantly asked, “Do you believe in the power of healing through pray?” I nervously knew where this was going and wasn’t sure what to do, but I replied, “Yes, I’m a Christian.” She said, “I want to pray for your daughter to be healed.” I replied, “But, she has already been healed.” She looked puzzled and said, “She has?” I said, “Yes. A year ago Zoey was unable to eat foods or drink liquids and was fed through a feeding tube. God healed her swallow and now she can eat and drink again. We also prayed for her brain to grow, and Zoey has surprised all of us with being able to read.” The lady nodded and then realized that I was on edge and defending Zoey. She gave me a hug as I stood there with my arms awkwardly at my side. She exclaimed, “I’m so glad she has already experienced healing.” She walked away. In my head, I was thinking so many thoughts….
….Why does this woman assume that I’m not a Christian? Is it because I’m wearing a superman hoodie? Why does she think that Zoey is sick? Why does she think Zoey needs to be healed of who she is? If Zoey could be restored completely by restoring all of her DNA, would she still be Zoey? I’m must be a horrible Christian if Zoey is still disabled despite all of my praying? ….
….Meanwhile, Zoey had heard this woman’s plan to pray for her to be healed. While thinking these thoughts, Zoey was looking at me and making vomiting sounds and holding her throat like she does when she tries to say someone is sick. She knew the woman thought she was sick! There is nothing outwardly wrong with her that this woman would know that she needs prayers for immediate healing. Zoey knows all about prayer. We pray specifically for her every night and God has healed her in so many ways. Our wonderful church also prays for her daily and weekly. They are powerful prayer warriors. With their help, and God’s power, she has come so far in life.
You Just Prayed for All of Me!
I should be happy that this woman wanted to pray for Zoey, right? The thing that bothered me about this stranger praying for Zoey is that this woman just wanted to pray for all of Zoey. She wanted to pray for who Zoey is. Zoey’s personality is the only thing that she saw, and she saw it as flawed. She thought that because Zoey doesn’t walk like us, talk like us, or think like us, she needed to be changed. She felt that Zoey needed to be healed of who she was. She meant to do no harm. She meant to heal Zoey with the power of prayer, but she had no idea that praying for “all of me” is not what Zoey needs or what I needed at that time.
“You just gestured to all of me!” exclaimed Hiccup. How can someone’s whole being be wrong? Zoey may have two genetic syndromes, Cerebral Palsy, and Autism, but she was created for a purpose. God doesn’t make mistakes. Her personality and outward appearance are her God given attributes. You can’t pray them away. You can’t pray for “all of this”.
We Are Not Alone
We are not the only family that has experienced this well meaning gift of healing prayer. One of my dear homeschooling friends, Lauren, has an adopted daughter Olive, who was born without eyes. One day while at the zoo, my friend and her seven children were waiting to meet us for lunch. Olive struggles with low tone and currently isn’t walking, so my friend had been pulling her daughter in that large covered wagon through the zoo. Despite lacking vision, Olive was enjoying her day. With her keen sense of hearing and smell she enjoyed the twitter of birds, the unique smells of the animals, and took advantage of various touch exhibits at the zoo. Olive kept her happy demeanor, and was enjoying the beautiful day with her family in all the ways that she could. .
So while hanging out by the zebras waiting for us to join them for lunch, this sweet family was approached by a family on a scavenger hunt. They needed a picture of a covered wagon and Olive’s buggy fit the bill. Lauren agreed to the picture. After the picture, the woman started to walk away, but then looked more closely at Olive. This well meaning stranger halted and asked, “May I pray for your daughter?” My friend has experienced “well meaning prayer” before, but was caught off guard and wasn’t able to express her prayer wishes for Olive. The well meaning stranger prayed for Olive to regain her sight, however, Olive lacks the very organ needed to see. I’m not saying this is not possible for God to regrow eyes, but this should be Olive and her mother’s choice to pray for this particular healing, and again, I do believe that God does not create mistakes.
Having no eyes is no different than having blue eyes or green eyes. It’s something that Olive was born with. If you don’t like the color of eyes that God gave you, you can use contacts to change them. However, God gave you those beautiful eyes using your God given genetics. Why was Olive born without eyes? We don’t know, but God does know the whole reason. I see glimpses already. I see that Olive’s genetic makeup has given me a truly wonderful friendship with her mother. She is someone I can confide in and, in return, comfort at times. It has given students at our coop a chance to help a precious girl navigate her world. Her lack of eyes has taught her older siblings compassion and how to be endless helpers to a person in need. Many people who surround O can look passed Olive’s disability and can see her ability. Olive makes us all smile, laugh, and stare in utter amazement at her perseverance. Praying for restoration of her eyes, and sight, is most definitely in God’s power, but knitting Olive in this special way has allowed all of us to become God’s hands and feet to her. This is just a tiny glimpse into what God has planned for this special girl who happens to be sightless. I am so happy I get to watch her grow up and shine her beautiful light upon the world that is visibly dark to her.
When this woman prayed for restoration of her sight, Olive heard this. She is still quite young and doesn’t realize yet that she isn’t like anyone else. Her mother, Laruen, is so wonderful with her and emphasizes to Olive that she sees with her hands and that God made her special. Olive hasn’t yet grasped that others see differently than her, and from a developmental standpoint, this is appropriate. However, having a stranger point out her differences so openly without asking the parent’s permission is insensitive. It could someday bring emotional harm to Olive when she is going through the spiritual process of finding the purpose behind her differences.
Prayer Etiquette
There should be a class of prayer etiquette for anyone who plans on praying for someone in public who has an ailment or disability. Over the past few weeks I’ve been thinking of how this situation could have been made better. My dad, Dr. Jack Wallace, is a pastor and was helpful in formulating many of these ideas. Here are some tips for how to approach someone you think is in need of prayer just because of their outward appearance.
Address the person you want to pray for directly. If it is a child and they are with the parent, engage BOTH of them in conversation. Don’t get caught praying for “all of this”.
Don’t immediately ask to pray for them. First introduce yourself, make eye contact with the person, and then try to make a connection with them in a meaningful way. For kids it is easy. You can say something like, “I love your sparkly shoes!” If you are curious about the person’s disability, you can ask, “Do you feel comfortable telling me about your disability (or your child’s disability)?”
After making a connection, ask them specifically, “Do you have any prayer needs?” or “I’m a Christian. Is there something specific that I can pray for about for you?” This allows them to choose if you pray for them and exactly how you pray for them. It shows them that you care about them in a personal way. Follow up with this question, “Would you like for me to pray with you now or later during my prayer time at home?”
Don’t offer to pray for complete healing unless the person requests it. If they are a Christian, they most definitely have already prayed for that type of healing. In fact, abruptly praying for complete healing for them without asking, makes a Christian question their own faithfulness. “Why didn’t my prayers work for complete healing, but you are telling me yours will?” Believe me, I have prayed for Zoey to have her 7.29 MB of DNA restored. God politely reminded me that he is the source of Zoey’s DNA, her inner parts, and put her together in my womb; she is beautifully and wonderfully made. Psalm 139:13-14 says, “For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.”
Consider praying for that person with a disability from afar. God knows their needs. If you just send up a prayer for that child with pink glasses and sparkling mini mouse sneakers who is screaming and covering her ears while her mom sings “Ring around the roses…”, God will surely help them in any way they need. He is truly gracious.
Unfortunately, I hadn’t thought of all of these tips in that fleeting moment between being offered prayer and declining it. I somewhat regret my words to this well meaning stranger, and am glad that I have the tips above to share the next time I am approached with a “you just prayed for all of me” prayer. Instead, our story went like this…
… As the woman walked away and Zoey was pretending to be sick, I called out after the powerful, praying woman and said, “You need to watch your words. Zoey heard that you wanted to pray for her to be healed. She now thinks she is sick. She is not. She is Zoey.” The woman looked as though she was in pain or disbelief, but I didn’t focus on her for long. I angrily looked away and back to Zoey. I remember telling Zoey that she is fine, that she is a miracle, that God loved her so much that he saved her from dying as a baby and has a purpose for her.
She’s Beautiful!
An onlooker came up to me and put her hand on Zoey’s back and said, “She’s beautiful”. Another woman nodded her head in agreement. We headed to the checkout as I felt guilt wash over me for telling someone who wanted to pray for Zoey that she needed to “watch her words”. Maybe this woman was told by the Holy Spirit to pray for her? If she was, I’m jealous! I wish the Holy Spirit had told her to pray for me. I’d love to be healed completely of my autoimmune disease. Ha Ha! As we checked out at my favorite line, the cashier who’s teenage son has Autism, listened to my story and agreed that the woman meant no harm, but only needed a little counseling on how to pray for strangers.
At that point, as usual, Zoey was pretty much done with shopping. She actually doesn’t mind shopping at all, but leaving the store is such a big transition at the end of the fun time we have, that she typically has a meltdown. The cashier from the next line over and the grocery bagger were amazing! They saw my emotional state and Zoey being just Zoey and came over to entertain her. They read her board books and let her help put items in bags with assistance. She felt so loved and special.
Guess what? At that point, it would have been totally appropriate for them to ask, “How can I pray for you, Zoey? Can I pray for you right now or later on in private?” Zoey most likely would have answered with a coughing sound and grabbing her throat. I would interpret, “Pray a prayer of thanks to God for returning her ability to eat and drink to her baseline before her surgery two years ago. Then, please pray for continued healing of her swallow. Zoey would love to drink thin liquids some day!” Or, you never know, I may have asked for those sweet helpers to pray for “all of this“.
