Checking Vitamin D

DI need to start this post with a disclaimer. This post suggests that it may be worth asking your child’s doctor about checking Vitamin D levels if your child has MECP2 Duplication Syndrome. If there are signs of deficiency, it suggests discussing supplementation with the doctor. It is not intended to recommend supplementing vitamin D unless a deficiency is identified or without your child’s doctor’s approval, and it is not recommending excessive doses of vitamin D. Having said that, here are the reasons that checking might be worthwhile.

Two kinds of problems with bones are apparent with our kids. First, bone fractures are a frequent problem and often these are “low-energy fractures” that involve the breaking of bones without severe impact or stress on the bone. Second, scoliosis and other boney deformatites often develop. There are a lot of things that can contribute to these problems. Low muscle tone, lack of activity, reduced sunlight exposure, and medication side effects are certainly part of the problem for kids with disabilities, but in some cases low levels of calcium and low levels of vitamin D can be a significant contributor.

Another possible effect of low vitamin D is that there is some evidence that vitamin D deficiency makes seizures worse. This evidence is not very strong at this time, but there is enough reason to think it is a real possibility, and since it is not pointing toward massive doses of vitamin D, just correcting any identified deficiency, it doesn’t seem like a dangerous step to take. Of course, we know that severe vitamin D deficiency can cause seizures, but the effects of milder deficiencies are less clear.

A pilot study by Hollo and colleagues (2012), however, tested the effect of supplementing Vitamin D in a small group of individuals with hard to manage seizures who had low-blood levels of vitamin D and they reported a 40% reduction in seizures.

we measured serum 25-hydroxy-vitamin D (25(OH)D) levels and normalized it by administration of vitamin D3 in 13 patients with pharmacoresistant epilepsy. To see if vitamin D3 has an impact on seizure frequency, we compared seizure numbers during a 90-day period before and after treatment onset. We found that seizure numbers significantly decreased upon vitamin D3 supplementation. Median seizure reduction was 40%. We conclude that the normalization of serum vitamin 25(OH)D level has an anticonvulsant effect.

Now, it is important to note that this “pilot study” was small and did not use a strong research design. It is also important to note that they did not try this with all epileptics, only those who had deficiencies.

In our own experience, our son has refractory seizures, low bone density, and history of low-energy fractures. So we were already supplementing Calcium and vitamin D quite substantially. His blood levels of Vitamin D were tested in part to make sure that we weren’t overdosing him. Surprisingly, we found that he was still deficient and needed more. His seizure frequency and intensity is very variable, so it is difficult to judge, but we think that we might be seeing some improvement.

So, if your child has MECP2 Duplication Syndrome, checking vitamin D levels and supplementing to treat any deficiencies that are found may be worth discussing with your child’s doctor.

Christiansen, C., Rodbro, P., & Sjo, O. (1974). “Anticonvulsant action” of vitamin D in epileptic patients? A controlled pilot study. Br Med J, 2(5913), 258-259.

Fong, C. Y., & Riney, C. J. (2014). Vitamin D deficiency among children with epilepsy in South Queensland. J Child Neurol, 29(3), 368-373.

Hollo, A., Clemens, Z., Kamondi, A., Lakatos, P., & Szucs, A. (2012). Correction of vitamin D deficiency improves seizure control in epilepsy: a pilot study. Epilepsy Behav, 24(1), 131-133.

Harijan, P., Khan, A., & Hussain, N. (2013). Vitamin D deficiency in children with epilepsy: Do we need to detect and treat it? J Pediatr Neurosci, 8(1), 5-10.

Scorza, F. A., Albuquerque, M., Arida, R. M., Terra, V. C., Machado, H. R., & Cavalheiro, E. A. (2010). Benefits of sunlight: vitamin D deficiency might increase the risk of sudden unexpected death in epilepsy. Med Hypotheses, 74(1), 158-161.

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