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Myoclonic epilepsy diagnosed - it was actually a milk allergy!!!

Tue, 07/25/2017 - 19:18
I wanted to create a post regarding the story of my son who was diagnosed with myoclonic epilepsy in April 2017. George was born in January of 2015. He was a happy healthy baby. When he was about 6 months old - I noticed that he was having what looked like a retained infant startle reflex in response to noises or even bright colors but it seemed to come and go. I mentioned this to his pediatrician but there didn't seem to be a real problem. As he got a bit older, he struck me as crankier and clingier than most toddlers but I just thought that it was a personality thing. However- after he hit his 2nd birthday and after I stopped breastfeeding him - the jerks increased dramatically - between 15 and 30 a day, sometimes more. His arms would fly up and his eyes would move up toward the ceiling. The jerks would be between 2 and 4 seconds. Sometimes he would cry right after the jerk but, more often, he would not. At his two-year-old check-up, he startled in front of his pediatrician and we were referred to a neurologist who diagnosed him with myoclonic epilepsy in April after a 20 minute EEG. He was put on Keppra, clonazepam and then (to replace the clonazepam) Onfi – none of these medications helped. His seizures would be persistent during the day but would come in waves as he fell asleep. I constructed a timeline of his seizure activity to try to understand what was happening and noticed that there was such a big increase when he went to cow’s milk. I asked his neurologist if there could be a connection and was told no – that seizures usually begin around the same age that babies are weaned. I scoured the internet to see if I could find any information that supported my hunch that dairy may have been exacerbating (or causing) his seizures. I found another mother (her little guy's name in Niko) on this epilepsy website who reported that her son was cured of his seizures when she cut milk (casein, the milk protein) out of her little one's diet. Toward the end of May, I cut casein out of his diet. Within 24 hours - his seizures slowed and, in five days, they were gone. In those five days, I actually let him have a bowl of ice cream and he had eight seizures in the following 4 hours. He had his last bit of casein on May 27 and, on May 30, his last seizure. I weaned his from his Onfi and then his Keppra by the close of June. Additionally - his disposition is much happier and his speech development, which had been delayed, began to pick up (We are still working on it). I realize that epilepsy does not usually have this easy of an answer. However, it does not make sense that Niko and George are the only two kiddos who have been diagnosed with epilepsy when, in fact, their seizures were a neurological manifestation of a food allergy. There seem to be three possibilities with George's case: 1) the food allergy was a delayed food allergy that leaked into his blood stream and caused inflammation and seizures or 2) that his allergy of casein caused such an extreme form of inflammation that his body was not able to absorb nutrients leading his body to suffer from malabsorption that he was, effectively, malnourished which led to the seizures. He has always been small and, due to tooth decay, George had to have 4 teeth extracted on his 2nd birthday (an effect of malnutrition) despite rigorous tooth brushing and a diet almost absent of sugar or 3) the food allergy led to both seizures and malabsorption – two different effects of the same allergy. I think that it is the last of these options but I am not sure. To be perfectly honest - I have always shied away/ignored the growing reality of food sensitivities in the world today. I have fed my kids fruits and veggies but also pizza and corn dogs. I am not coming at this from a background of nutrition or medicine. I just know that my little one was diagnosed with myoclonic epilepsy, suffered from so many seizures, was prescribed some really strong medicine that did not help, and his seizures stopped after cutting dairy products. There are a team of Italian immunologists who are researching the connection between dairy allergies and seizures. This is a link to their article as well as a link to a case study was written on little Niko. If you have any questions – please feel free to email me at cedarkeyheather@gmail.com. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5437772/ "The Gut–brain Axis: A New Pathogenic View of Neurologic Symptoms – Description of a Pediatric Case" https://www.ncbi.nlm.nih.gov/pubmed/25394911 "Epileptic seizures as a manifestation of cow's milk allergy: a studied relationship and description of our pediatric experience"

Comments

well understand that any

Submitted by just_joe on Wed, 2017-07-26 - 10:55
well understand that any ailment (not just epilepsy) can be misdiagnosed. For a diagnosis of epilepsy all that is needed is 2 seizures. That is without testing. As for a 20 minute EEG almost all of them will come back normal. As for medications not stopping his seizures. Medications that work for one person may not for the next. Which is why medications are tested after approved for use. They were originally tested for treatment of a specific type of seizure, After approval they are tested to see all the different types of seizures they stop. they are also testes to see which medications they work with to stop seizures,.I am glad that you found your sons answer to his issue. 

I can't remember now where I

Submitted by mariet_5926de5df37df on Thu, 2017-07-27 - 12:09
I can't remember now where I found the info but an American has been promoting something called a GARD diet where one avoids corn, gluten and  cow's milk ; the latter because of the casein. He mentioned something about them containing substances which excite  neurotransmitters. So what you found in your son's case supports this, But many different reasons for epilepsy and brain issues. Thanks for the info.

I believe that dairy products

Submitted by Devin_59803d51b1afd on Tue, 2017-08-01 - 06:00
I believe that dairy products can have some affect. I have epilepsy myself and even though cutting back from milk didn't stop my seizures it did stop my migraine headaches. That I use to get through my pre-teens and teens. I am now in my forties.

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