Added with permission:
The Story of Bauer – a 2 yr old with Severe Food Allergies
My son has had seizures and I have connected them with food allergies! He has now been seizure free for 5-6 months. I wish I could go back to that first allergist and tell him…”you may have MD after your name, but I have MOM and that outweighs you any day. My gut instincts have been right on.
Visiting an allergist
I discovered my son, who is nearly 2.5 years old now has food allergies. When I suspected this, I called our allergist. Actually when he was 6 months old, I took him too for environmental testing. Then nearly 1.5 years later, kept a food journal and what time he ate, when he had a seizure. I told the allergist my assumption…again…and he said condescendingly, “I have NEVER heard of anyone having a seizure from a food allergy.” I told him to humor me and do the RAST tests.
My son came back positive for everything with eggs and milk being the most severe. He then asked me after removing milk if he still had seizures. I said yes, then he told me, I guess you can add milk back into his diet then. I told him to fly a kite basically! I asked him if he thought of there being a possibility of more food allergies besides the 7 he would let me test. He still stuck to, “food allergies don’t cause seizures.” So, I got a different allergist, and he tested over 25 foods for me so I could get a good varied diet together that was allergen free.
My son tested positive for more foods. Beef, banana, green beans and peas and the list goes on and on. It’s easier to ask me what he can eat. Once those foods were removed along with gluten, soy, wheat and rice, and corn, it was an amazing difference.
After changing his diet:
- He was no longer getting sick all the time
- he could have a low grade fever without seizing
- he could cut teeth
- his belly was not bloated
- he was having more normal stools
- his rapid/hyperventilated breathing disappeared.
(even one Dr. tried to treat him for asthma before we found out about the food allergies.)
Types of Seizures
To jump back, at 3.5 mos. my son had his first seizure. A focal seizure. Only his right fist gripping for a minute and then 2 hours of paralysis. He was put on trileptal and they worsened. Then he was on Keppra and then we had to add Topomax. Over the years they progressed to generalized and partial, including scary ones like autonomical seizures. At around 9 mos. my son tested positive for the SCN1a mutation and the geneticist told me it was in all his DNA and that’s why he has seizures, this was before I found the food allergies. Yet I found cases of people who had the same mutation who never had seizures. When I asked the geneticist about that, he just blew it off to a fluke. I just would not accept that answer and I knew something triggered this mutation. Everyone has mutations, but there’s environmental things that turn them on and I was bound and still am, to turn them off. His neurologist told me he would have myoclonic seizures, I think he only had one that we caught on an EEG when he was about 6 mos. I have lost track of time. And it’s never been confirmed if it was for sure a myoclonic.
Vaccination Issues – Mom and Tot
To jump back even more and to make matters worse, when my son was 2 mos. old he had some vaccines and one of them was the WRONG one! I was anti-vaccine anyway and made a compromise with my son’s dad..BIG MISTAKE! I also had a Rubella vaccine before I left the hospital after giving birth. Something I didn’t even want or get time to think about. When I read the AMA recommends nursing moms DO NOT have this vaccine, I was SICK! I also had a flu shot when I was a few months along in my pregnancy. Along the way in my pregnancy I learned a lot about vaccines. And needless to say, my son will not have any more in his life.
Mold in the home
Yet to compound things even more, the home we were living in all through my pregnancy had black mold! When I found and listened to a Podcast by a leading environmentalist geneticist on the east coast and he said, “Molds can cause genetic mutations.” my heart sunk! The mold was discovered when my son was about 6 months old. We had it remediated once for $5K, but the work done wasn’t good enough. My son had a chronic cough, ear infections, sinus infections, etc. Not one Dr. thought, your house was sick and it’s making your child sick, even though I told everyone of them about our black mold house.
I have learned so much about health care/Dr.’s, alternative medicine, chiropractic (my sister is one), applied kinesiolgy, IgE, IgG, CPR, pulse-ox monitors, oxygen, seizure med’s, EEG’s, MRI’s, food allergies and how to cook/eat around them…oh the list goes on and on, but most importantly…I have my son!
He’s currently taking depakote and topomax (weaning him now). He has diastat in case of a seizure. He usually has/had an average of 6 min. seizures, but he’s had some as short as 20 sec. and some up to 45 minutes (which is why we have diastat). I still do not think I have emotionally/mentally processed the stress of seeing my infant in such stress, pain, and feeling hopeless to help. Well, now I am not! I know more than his doctors do and I want to educate the doctors around here to test for food allergies. When I read on your site the same thing, I knew my story was justified.
Possible Dravet’s syndrome
My son was given a potential prognosis of Dravet’s Syndrome because of his SCN1a mutation. I sought out as many opinions as I could get. Every doctor was amazed he was doing so well and this was before the food allergies were realized. I attribute that to my will and drive to never accept this is how my son is going to be forever. At that time, I knew the mutation was causing his seizures and now the food allergies triggered them. Only time will tell if it was the factor that turned on his mutation and if he will outgrow his seizures. If he does, I am hoping it will give so much hope for other kid’s who are truly Dravet’s kids.
Once again, I am so thankful I stumbled upon your site…wish I had last year! My son is normal, acts normal, developed normal…he is so normal. For the grim picture that was pained, he is perfect! I have attached a picture of him…as he is now and when he was on his first EEG..he’s a trooper and strong, he’s wonderful.
Be well and thank you again!
Mom of Bauer, Age 2 years, 5 mos. old.
Note To Parents:
Seizures and allergies are both very serious medical issues. People who are interested in helping these families may consider a CSU Global degree in healthcare administration.