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Febrile Seizures And Celiac In Children

cherishlife

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cherishlife Rookie
cherishlife
Posted

My two year old son had a "Febrile Seizure" a few days ago. We believe he has celiac disease, but has not been medically tested. My sister and I both have the disease and he has many symptoms. I heard that children with Celiac can have seizures. They are attibuting his to a fever, however, they can not explain where it came from. They performed CT scan, blood work, and spinal tap to no avail. He has been having these "high" fevers about once a month with not other symptoms. He has had digestive issues since birth. (32 week premie)

Any advice or help would be greatly appreciated.

Tammy

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bear6954 Apprentice
bear6954
Posted

My son had a one at about 18 months - before being diagnosed with celiac. We took him to the er since we were in the car and his temp was 103.5. My son was diagnosed with an ear infection. Before my son was diagnosed with celiacs he would have unexplained fevers that would last less than 24 hours but you could tell he felt bad. My son also has night fevers - he normally sweats real bad and I need to change his pillow case and turn his pillow over. Sometimes fevers like that are a result of the liver not functioning correctly which happens with a lot of celiac patients. Once my son went gluten free the fevers went away. Remember that a high fever does not cause the siezures - how fast the fever rises causes the siezures. Luckly, my son has only had one - it scared 10 yrs out of my life! Good luck

cherishlife Rookie
cherishlife
Posted
  • Author
My son had a one at about 18 months - before being diagnosed with celiac. We took him to the er since we were in the car and his temp was 103.5. My son was diagnosed with an ear infection. Before my son was diagnosed with celiacs he would have unexplained fevers that would last less than 24 hours but you could tell he felt bad. My son also has night fevers - he normally sweats real bad and I need to change his pillow case and turn his pillow over. Sometimes fevers like that are a result of the liver not functioning correctly which happens with a lot of celiac patients. Once my son went gluten free the fevers went away. Remember that a high fever does not cause the siezures - how fast the fever rises causes the siezures. Luckly, my son has only had one - it scared 10 yrs out of my life! Good luck

Thank you! That is exactly what my son has been having for about six months. Unexplained fevers. This one however had the sudden spike to 104.6 and that is what they told us at the ER caused the seizure. However, when I brought up my concern about the celiac disease, the doctor said it was unrelated. Thank you...

Tammy P.S. I think it scared 20 years out of mine. I literally thought he was going to die. Stopped breathing and turned blue. I thought he had choked on something.

bear6954 Apprentice
bear6954
Posted

My son was in my husbands arms when it happened. I hit construction barrels to get to the er. He passed out cold and then slept for 3 full days. I could not get him to wake up for more than 10 minutes he would just lay there and moan. On top of that we were on vacation in Michigan (we live in NC). I took ray to my old family dr and he said that ray could sleep for three days to work it off. And he did. The one thing he mentioned was that I needed to get liquids down him - any kind. The only thing my son wanted was diet coke so my husband and I feed him diet coke in a medi cup and fed it to him that way. After three days he woke up starving - eating gluten but eating. For about 1 year after, I gave ray tye and motrin every three hours - so he is getting medi before anything wears off - ex - 1200 - tye; 300 motrin, 600 tye, 900 motrin. I would do that for the first 3 days of a cold - i was told to by 3 different drs. I dont worry so much anymore, but I am careful and carry motrin in my purse and car. My son is having liver issues again and is going for a biopsy - I am not sure if his problems are from breastfeeding (can not wean him for the life of me) and eating gluten (no one told me gluten passes in breast milk - i am not gluten-free) or if he has something else. but his night fevers have been back for about 3 weeks and his liver emzymes are through the roof - like 700 and 1400. We have started him on EO 28 Splash which is made for malnurished children - per request of his dietiation. He sleeps in my bed and his night fevers normally occur between the time he falls asleep and 11 pm. I was told that he could have a seizure if his temp rises to high but so far he has not. And since starting him on that formula stuff, his fevers are getting less - I dont think he had one last night!

Has your son been dna tested for celiacs? I would push to get to a gi dr as soon as possible. Its so hard when you have a sick child because they can not tell you what is wrong or why. I felt so guilty that my son felt so bad for over 2 years and I could not do anyting about it. I never heard of celiac until my son - by the way I am dna neg, but biopsy neg. My son tested negative on all celiac blood tests, positive on dna and very positive biopsy.

cherishlife Rookie
cherishlife
Posted
  • Author

Thank you for sharing. I know that I am going to really push the doctors for more test. The ER doctor told us that he was to young for DNA testing for Celiac, which at the time I really didn't have the energy to dispute. However, I know that it is incorrect. I was told by my Celiac doctor all my children need to be tested. We do not have insurance right now, transition of jobs for my husband. We were waiting for the insurance to kick in before all the test. At this point, I don't care how much it cost, I just want to know my son is going to be healthy. I am going to take him completely off gluten. We had started to go in that direction...but now I am going totally gluten free with him. It will be difficult, he is they youngest of four children. We may need a gluten free home.

Has your son been eating gluten free since his episode? I know you mention the breat milk. I know my sister who has Celiac has liver issues. I pray they are able to determine what your son needs to bring those levels up.

I am meeting with a RN who specializes in Celiac and if she has any suggestions I will let you know. She lives here in Portland, Oregon where we are from.

Thanks again for sharing this inoformation. I has been very helpful.

Blessings, Tammy

bear6954 Apprentice
bear6954
Posted

My son had his seizure at 18 months and he was not diagnosed until he was 2 yrs old. August he had his seizure. October started the projectile vomiting several times a week. He has always had 5-9 really messy stinky diapers a day. From october -jan we went to the doctor every other week because I knew something was wrong. WIC tested my son for anemia and he was - that lead our pcm to run more blood tests. They showed the increased liver enzymes, amemia but he was all blood neg for celiacs. Ended up with appt for ped gi dr the following week and he was dna positive for both dq 2 genes - me too. We went gluten light at that time until the biopsy and completely gluten free on the day of the biopsy. His gi dr saw damage during the procedure. Now i know i was giving him gluten all the time with breastfeeding him. he is also hypoglycemic - from what we dont know. They are trying to diagnosis him with glycogen storage disease which is horrible all around. that is the reason for the biopsy. We will see. I think your dna test was 395 and it was a cheek swab. If celiacs runs in your family, i would try the gluten challenge until your insurance kicks in to help with the dr bills.

bear6954 Apprentice
bear6954
Posted

by the way, i have been gluten free for about 2 weeks now and I believe my son is no longer having night fevers!

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Takala Enthusiast
Takala
Posted

Combining Tylenol and an non steroidal anti inflammatory (NSAID) such as Motrin (ibuprofen) is extremely hard on the liver.

bear6954 Apprentice
bear6954
Posted

Tylenol is digested by the liver and Motrin is digested by the kidneys. If you have liver issues its best to stay away from tylenol and use motrin.

cherishlife Rookie
cherishlife
Posted
  • Author
Tylenol is digested by the liver and Motrin is digested by the kidneys. If you have liver issues its best to stay away from tylenol and use motrin.

Thank you...we did see a doctor today who wants to do more testing. He agreed that if he does better of the gluten then just take him off. The first doctor I have met that actually agreed that the testing is not correct most of the time. I greatly appreciate all the feeback. I will only give him the med's if necessary.

  • 1 month later...
cherishlife Rookie
cherishlife
Posted
  • Author
Thank you...we did see a doctor today who wants to do more testing. He agreed that if he does better of the gluten then just take him off. The first doctor I have met that actually agreed that the testing is not correct most of the time. I greatly appreciate all the feeback. I will only give him the med's if necessary.

Happy to report...my 2 year old son has been Gluten Free and Seizure free since. We are thankful and prayerful that this is the answer and will continue with the Gluten Free diet. As hard as it may seem, it is worth it. Maybe some day we will have a totally gluten free family, which would make my life easier!!! :) For now...mom and baby are staying "Gluten Free"!!! :) :) :rolleyes:

sol's mom Newbie
sol's mom
Posted

do seizures ever start in older kids? is it something i need to be aware of with my 3 year old? or if she hasn't had that happen already, then i don't need to worry about that possibility??

swalker Newbie
swalker
Posted
do seizures ever start in older kids? is it something i need to be aware of with my 3 year old? or if she hasn't had that happen already, then i don't need to worry about that possibility??

We had our one and only gluten induced seizure at 2 1/2 but he had reduced his diet to pretty much nothing but gluten for the two preceeding weeks.

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