My son was CURED of epilepsy.... It was a milk protein allergy!

I feel passionate about getting the word out about what happened to my son Niko, and how he was "cured" of what was considered to be a classic case of early onset generalized epilepsy. After a really difficult few months of seizures, my 14 month-old son is now 100% healthy and seizure-free. I am hoping that his case can shed light on future study in the field of epileptology, and perhaps help other patients overcome seizures. Our story: My son Niko, who was otherwise a healthy and active boy (although quite underweight, and "colicky" as an infant, for which he was treated he was unsuccessfully treated with reflux medicine), started having seizures on March 22 of this year at the age of 11 months. At first, I didn't know what to make of it--his eyes would roll quickly back/upward, and he would lose his balance for a second or two. I thought for a few days that it might be a problem with his vision. By the third day, the eye/balance incidents were happening 15-20 times/day. Understandably, I was concerned. After a visit with our pediatrician, we were immediately referred to a neurologist, due to the suspicion of worsening seizures. An EEG was administered, and few hours later, we met with a local neurologist who diagnosed Niko with epilepsy. According to the results of the EEG, Niko had "frequent high amplitude generalized epileptiform discharges." The neurologist suggested that his condition was quite serious, and that Niko would need start anti-seizure medication (Keppra 100 mg twice/day). He ordered an MRI and genetic testing for further study. My husband and I were dumbfounded. There was no history of epilepsy in our families, and the seizures seemed to start out of the blue. We started Niko on the Keppra while we awaited tests. Unfortunately, while we waited, we did not see significant improvement on the anti-seizure medication (plus Vitamin B6). Niko continued to have regular seizures (15-30 times/ day), even when the dose was markedly increased, then doubled. We completed the MRI, which came back normal. We had the genetic blood test, which has since come back normal.* (*There was one unsubstantial finding: He is heterozygous for a single recessant variant of uncertain significance in the POLG gene.) Our Niko was shaping up to have an untreatable case of generalized epilepsy. Fast forward two months, to May 13 of this year. Niko contracted an unrelated, common childhood virus, roseola. It was a rough time. He was extremely sick for 9 days, with a consistent 104.5 fever. (He was admitted to the ER during that time.) Niko didn't leave my side for 9 days. A few days into the illnesses, I noticed something very interesting happening, beyond the obvious problems from the roseola virus. Niko had become so sick that he stopped eating -- including any solid food or breast milk. I could barely keep enough water in him to keep him hydrated. But what was odd is that once he stopped eating, I didn't see any seizures. I should note that every other time Niko had been sick--and he had MANY ear infections--the seizures would get markedly worse. I didn't notice any seizures for a few days into the illness. I knew there is no way I could have missed them, because I was by his side night and day. I started to wonder, perhaps it was something he had been eating that caused his seizures? I remembered that months before, I had asked the neurologist if the seizures could be an allergic reaction, since the seizures started the day after I started feeding him formula for the first time. He said it was definitively NOT something that could be cause by a food allergy. After doing some research online (I had a lot of time on my hands, with nine days on the couch with a VERY sick baby), I learned that there were definitely cases of food allergies causing seizures in children, although apparently quite rare. Quite coincidentally, another mom on a local online mom group posted that her child was having seizures, and someone else had commented that she should consider food allergies, because she had seen something on TV about a child having seizures due to a gluten allergy. They posted a link to the Discovery Health episode, in which a boy who was diagnosed with a gluten and casein allergy, and after stopping gluten and casein, was cured and seizure-free. (https://www.youtube.com/watch?feature=youtu.be&v=j7LBhiwk5V8&app=desktop ) Not knowing what casein was exactly, I looked it up and immediately it struck me: cow's milk protein. Niko's seizures had started the DAY AFTER I started giving him milk-based formula for the first time. Could it be possible that he was allergic to cow's milk? He had been eating a LOT of milk, yogurt, cheese, and even had been given his vitamin B6 mixed with yogurt twice a day. I admit, it was a long shot to consider a food allergy, but I had very little to lose in giving it a go. So when Niko started eating again, I fed him everything EXCEPT cow's milk products. (He did eat goat milk products, since I had already switched to a goat's milk formula by coincidence, and I learned that goats milk did not contain casein.) Still, no seizures. Weeks went by, no seizures. I was almost positive at this point that it had to be a casein allergy, so I slowly stepped Niko off the Keppra over the course of a week. Not ONE seizure. As of today, Niko has not had one seizure since he stopped eating cow's milk on May 13th. After having 15-30 seizures/ day before that date. What's more, Niko is a completely different, seizure-free, healthy and THRIVING little boy. He is no longer fussy, and in fact an interminably happy child. He is also gaining weight, slowly moving up from the 4th percentile. In addition, as soon as I stopped feeding him cow's milk, his stools completely changed. I now realize that Niko had been so sick from casein that he had been having GI problems all along. (As a first-time mom, I didn't know.) Niko was finally able to get back in with is local neurologist on June 21, and another EEG was administered. The results were not surprising to me: Niko's EEG was completely normal. Niko, to the surprised of everyone who heard about it, was cured of what was looking to be a fairly untreatable case of epilepsy. Given the above events, I am 100% sure that Niko is allergic to casein, and that a casein allergy caused him to have seizures that otherwise looked like epilepsy. I should note that Niko was seen recently by a local immunologist to do the traditional tests for a cow's milk allergy. The doctor had never heard of allergies causing seizures, and the skin test and the blood tests came back inconclusive for a dairy allergy. Niko's allergy not only has an odd presentation, it is not showing up in traditional testing methods. According to one Italian study I found, a milk allergy has recently been found to cause seizures: "Usually, the gastrointestinal symptoms are recognized as a ‘typical’ presentation of the disease, with vomiting, diarrhea and/or constipation and gastroesophageal reflux. Nevertheless, recently ‘atypical’ symptoms, involving the CNS and the peripheral nervous system have been described. These symptoms can occur both in IgE- and non-IgE-mediated cow’s milk protein allergy, as expression of a multisystem spread of immunogenic mechanisms that occur due to cow’s milk protein allergy...Taken together the studies contained in the review confirm that a state of neuronal inflammation could be the basic trigger for epileptic conditions..." Raffaele Falsaperla, Piero Pavone, Stefano Miceli Sopo, Fahad Mahmood, Ferdinando Scalia, Giovanni Corsello, Riccardo Lubrano & Giovanna Vitaliti (2014) Epileptic seizures as a manifestation of cow’s milk allergy: a studied relationship and description of our pediatric experience, Expert Review of Clinical Immunology, 10:12, 1597-1609, DOI: 10.1586/1744666X.2014.977259 (I also believe it was possible that Niko was having seizures because malnutrition due to the milk allergy and severe GI problems caused low blood sugar, resulting in seizures. I can't be sure because his blood was never tested, and I'm not even sure if the seizures would look different in this case.) I can't imagine that Niko is the only child in the US, or in New England, who has been misdiagnosed with epilepsy. For whatever reason, food allergies are becoming more common in our culture, and I am concerned that there are other children and/or adults in the US who are being treated for epilepsy who might have food allergies. While I am absolutely thrilled that my child is now healthy and seizure-free, I am sad to think. what Niko's situation would be at age 5, or 18 had I had not caught this allergy early. I am hoping this his story could help other kids be "cured" of epilepsy before years and years of seizures take their toll. On a related note, this makes me wonder if neurologists might want to consider evaluating ALL seizures (especially with infants) as a possible food allergy first. Perhaps they could: A) administer a blood or stick allergy test to identify any allergies (which wouldn't have worked in Niko's case) ; B) test blood sugar levels for malnutrition due to food allergy (could have worked for Niko?); and C) instruct the patient to eliminate the major food allergens -- such as gluten, casein, eggs, and soy for babies--for a period of time see if the seizures subside. (This would have worked for Niko.) All of these tactics are relatively inexpensive, and quite easy to administer--if only while waiting for other tests such as MRI and genetic testing to be completed. Had we done this first with Niko, we could have avoided months of seizures, not to mention thousands and thousands of dollars in medical treatment. (The genetic testing alone cost $15,000.) I am currently searching far and wide did a neurologist or immunologist who is familiar with food allergies causing seizures whom I can speak to about my son's case. Perhaps Niko could be used as a test case for further study. I would be also be curious to have an expert immunologist test his allergy further. But most importantly, I want to do whatever I can to get the word out about food allergies causing seizures, as I am so grateful that my son's epilepsy diagnosis ended with a CURE!