My Son Has "Complex Longterm Febril Seizures" Am I the Only One Going Threw This

Hi S.,

I know you're terrified but you have to keep your wits. Praise God you know CPR! The first time my oldest child had a seizure I managed to handle it until she was safe and then I fell apart. I have learned a lot since then.

You know that febrile seizures are provoked from fevers. Building your little one's immune system is imperative to avoiding sickness, thus avoiding that awful spiking of a fever. I got very proactive and my children don't hardly ever get sick. I used to be terrified that another child with a sniffle would come close to my daughter and now I know that you can't keep your child in a bubble...you simply need to help them defend themselves the best way you can.

Three suggestions...I detoxed my home. Synthetic chemicals wreak havoc on the immune system. Chiropractic care, specifically upper cervical care, also will build the immune system. Nutrition, avoiding fast foods and processed foods and taking an absorbable multivitamin, will do wonders. If you want specifics on what I did please get in touch with me. I know how it is to be fearful for your little one. I'd love to help if I can...

God bless,

M.

Hang in there Mom. One of my sons had this as well (although not diagnosed and not to this degree) - have you tried lukewarm baths? Ever since my son's first seizure, lukewarm baths have become a staple in our household - anytime his fever reaches over 100 degrees we head to the bathtub. We still use tylenol/motrin but the lukewarm baths bring down fever immediately. Best wishes.

Oh my goodness...I am so sorry. I don't personally go through this with my kids, so I do not know how scary this must be. I can only imagine. So, if these are febrile seizures, did he have fevers with all of them? I've heard that the seizure is caused by the body's temp going up really fast. I wonder if you can give him tylenol or ibuprofen at the first sign of fever, if it would slow it down enough to prevent a seizure?? They say that these types of seizures don't cause any harm, but I can't imagine that if he was not breathing for 15 minutes.
Good luck, and I hope you get some relief soon!! ((((HUGS))))

your not alone my son had a virus at 18 months old he has 104 fever they called it febril seizures he had them til he was 5 year old they had him on medince til 5 yrs stoped medince he didnt have any til he was 12 then i talk to doctor at childrens hosp and he had the size of a softball dead tusue taken out of his left goble of his head but he was a good person for operation it was in a good spot to take it out the fever to high given him febril seizures damgaed that area bad so they took it out but couldnt get all witch is the spot where controls speech and leftside of his body so they left that spot alone so he couldnt not lose it. but ill tell you something all medince dont work good today they do have up to dated medince that dont mess with there school work. and arnt as bad . my son was told even though they didnt get the little rest out he maynot have anymore but he didnt have anymore but does have some to feel it but does not really feel much but fear if it ever comes back he is 26 now i always worrie about him but he live close now so if anything you will learn when they get older with it it called the ora they know right when they are going to have it and can warn you before thats what it was like for my son id always know when it was coming on he didnt like to be alone when it happen before it. if you would like to talk my email is ____@____.com anything i can update you on how and when it happen. my name is Darlene. hope this help and you are in the best hosp by the way childrens hosp save my son dr reylia if that how you spell it was his doctor he was the best but i dont think hes there anymore.

Having your child stop breathing and turn blue is singularly terrifying. You must live in fear daily of it happening again. Especially now you know his meds may not work.

You say that he had all the usual tests while impatient, but has he gone to see a pediatric neurologist? Ask your ped wheat he/she thinks about a consult. I guess that's where I would go next.

I did spend some time googling the condition, as I'm sure you have. I don't have enough knowledge to give you advice, but I have some interest in general seizures lately and had found a number of different schools of thought. For example some believe sugar intake has something to do with it in addition to all the other possible triggers (specifically a temperature in your case).

Please discuss all theories with your pediatrian before you try any preventative measure.

I sincerely hope for the best for your fella, there is NO STRESS like the kind you must feel.

Good Luck, keep us posted.