Hi

Our 14 month old was ill last week with a virus (she was vomitting), on Thursday and Sat. she had grand mal seizures. (she did NOT have a fever). They hospitalized her and ran some tests. CAT scan negative, still waiting for EEG results which may or may not be accurate since she was put to sleep for EEG. She is currently on Phenobarbitol until they figure out what is going on. Could this be epilepsy? Is anyone else more susceptible to this when they are ill? I also suspect she may have had one or two last week in her crib since she slept REALLY late two days and was out of it when I got her up. My biggest concern is that when I saw these seizures, they were completely silent. I don't think a baby monitor would alert me and I am terrified of her having one in her crib, stop breathing and I wouldn't know it was happening. Any suggestions? We are being referred to a pediatric neurologist but don't have an appt set up yet. Thanks


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Suzanne

hello suzanne:iunderstand everything you are saying....i have 4children 3 of them were diagnosed with epilepsy.my youngest daughter just started showing signs of seizures.my oldest is 4 and my youngest is 8months.i also have epilepsy and my neuro said it was likely they inherited it from me....i suspected that my 8month old started having seizures when he was a day old but they said his jerking and such was normal...well anyway about 4months ago he had an eeg and a mri...the mri was normal but the eeg came back abnormal...so they also gave him phenobarbitol and he is currently still on it....when my children started seizing and was diagnosed with "E"i started having them sleep with me....that way i knew every move they made......my oldests bed is next to mine and so on with the rest...thatt is how i put my mind to ease in that area at least a little anyway.....i hope all goes well with your child...welcome and hope to talk to you again.....

I would like to give all of you a little advice and a long story...

When my son, Dax, was 1 wk old, I woke up in the middle of the night to find him seizing and not breathing. In between seizures, he would fall into unconciousness. My husband and I rushed him to the hospital. They had to place him on a respirator and were unable to wake him up. The hospital was not set up for this small of a child, so they wanted to move him to the children's hospital. This was during a snowstorm and they were unable to lifeflight him to the childrens hospital, so they hand pumped him while we waited for the ambulance to arrive (longest hour of my life).

While he was in the NICU, they ran every test imaginable, including several EEGs, all negative. A week later, they placed him on phenobarbital and released him from the hospital.

18 months later they took him off the phenobarbital after another round of tests and declared him healty. I was told that they didn't know why this had happened, sometimes they just don't know.

We were thrilled that he was fine and moved on with our lives. Once Dax started school though, it was obvious that everything was not fine.

He was not acquiring any reading skills. In California, they do not hold children back and when I requested testing for learning disabilities I was told that if he still couldn't read by 8th grade, they would look into it. Meanwhile, Dax was miserable. He was being made fun of by all the kids and his teacher told him "Some people are just too stupid to learn to read." Dax would cry and beg me every morning not to leave him at school. It broke my heart.

So we moved! We went home to our family in Ohio and sought help for Dax while we looked for work. In Ohio, he was tested and found to have a reading learning disability.

Here in West Virginia, I mentioned him to my neurologist. The neuro requested to see him, so I got him all of Dax' medical records. After some testing, the neuro said that he believed Dax' brain was not developing as it should due to the infection he had as an infant. I said, "What infection?". Neuro, "the one that caused the seizures." But I was told nothing about that. They told me they just didn't know, and released him.

So now, Dax (who is now 9 yrs old) is in a special reading class, is scheduled for an MRI and neuropsych testing and is being closely monitored by a specialist through the school.

We finally have hope of helping him! And he loves school now and is excited to get on the bus every morning!

To sum up, my advice is this...ASK QUESTIONS. DON'T LET ANYONE FOB OFF HALF ANSWERS ON YOU AND KEEP SEARCHING FOR WHATEVER IT IS YOU NEED!! My ingnorance cost my son precious self-esteem and that has taken time to build back up.

ashnan....i am so sorry to hear about what your son and yourself went through.....but i am very glad you are getting the evaluation that your son deserves....right now i am fighting with myinsurance company so i can send my kids to some good dr's i am happy with.....the dr my kids are seeing i feel is just messing with my kids and i can't stand it...their regular pediatrician here in town and myself feel this neurologist isn't giving my kids the best evaluation that they deserve....and i will not rest til i find a dr.that can get their seizures under control....and give me some answers......i can relate to your story somewhat though....i had my 2yr old son in the hospital just recently....from complications from his meds.he was put on tegretol syrup 11days ago...his neuro neglected to tell me that it can cause certain side affects like high white counts,draw potasium out of the body and lower the blood sugar.....i found him unconcious in his bed the morning i took him to the hospital and it was on account of his meds....so right now i am fighting to get the answers for the seizures and breakthrough seizures...so yes i understand to a certain extent....so anyone on tegretol i recommend eating alot of fruits and vegetables that have all these added vitamins and such.thank you for listening and caring.......wish all well....

Thank you for your suggestions and caring words. I have been so scared this past week and don't think I will ever get the picture of her seizing and her lips going blue out of my mind. When we took her to emerg after her first seizure they did bloodwork and said she had a viral infection (like I said she had been vomitting all week). They considered doing a lumbar puncture for meningitis which can cause seizures but said if she had that she would have had a fever and been sicker than she was. I am going to the pediatrician on Monday that took care of her in the hospital after her second seizure two days later. I think he plans on taking her off the phenobarb if the EEG is negative and just "seeing what happens". From what I have heard about EEG's they have alot of false negatives and especially for children who were put to sleep for it like my daughter was. I am just really worried and scared right now but I am going to ASK ASK ASK and DEMAND answers. I can't wait to see the pediatric neurologist for his opinion.
Thank you all.

ASHNAN. do you know how illegal that was for the school district in California to treat you like that? They are REQUIRED by law to do any testing you ask for. I really feel for you. When Tiffani was little, and having speech therapy...I had problems with the therapist. So I asked for another one. (school district employees) The told me I couldn't have another one...she was the therapist for my area and I had to keep her. I pulled my daughter out, not knowing I could fight this. Well, we went on to preschool, and that is when I found out how wrong they were!! So, ashnan you are right...AND TOO ALL OF YOU OUT THERE JUST GOING THROUGH THIS, LEARN YOUR RIGHTS, LOOK FOR FRIENDS WHO HAVE ALREADY GONE THROUGH THIS, AND FIGHT FOR YOUR CHILD. I can not stress this enough. Learn the laws for your state and make sure your school KNOWS you know the law. Be an advocate for your child!

Sorry to vent, but it makes me so mad when I hear about school districts that have screwed people over instead of helping!!

Lindy

MomOf3,

I found that to be amazing too. I was told by the school district in Ohio that the schools had to provide testing and many other types of assistance AT MY REQUEST.

Also, here in West Virginia, Dax spends half a day with a teacher who specializes in learning disabilities. He also gets help with reading all his tests (math instructions, science, etc.).

You are so right. ALWAYS RESEARCH WHAT RIGHTS YOU HAVE AS A PARENT. It's sad to say, but not all teachers are wonderful, warm people.

Hi Suzanne,

My name is Lisa and we've been doing this with my lil guy Jake now for a year. He was 10 mths when they started. He's now 22 mths.

I don't think it will make you feel any better, maybe just more "normal"... But, I will never be able to get that sight out of my mind for as long as I live the image of Jake, limp, BLUE, not breathing... It's like it was etched there with fire or something.

He had a grand mal shortly after he was admitted last Oct. and was hooked up to an EKG and he flat lined. There was a Code Blue called to his room... It was like being on the set of ER or something.

Every seizure I've seen since I see that line go flat and hear that horrid sound it makes...

Jake's seizures of silent as well. We do recognize sounds that he will make before hand now. He often tics, like he's clicking his tounge against the roof of his mouth before one starts.

It's been a year yesterday that this all started for us. It does get easier, the fear tends to become manageable, you adjust your life style...

I'm hoping in your case that all it was is the infection and she wont have another one.

How is she doing developmentally? Is she behind in any areas? That may be more of an indicator then anything... Keep us posted!

You are in my thoughts and prayers

Lisa and kids

Thanks Lisa. It makes me feel better knowing that I am not just freaking out - not being able to get that picture out of my mind- I can't even look at the place on the kitchen floor where she had the grand mal. How do you handle nights when he is in his crib/bed? Would you know if he had a seizure? Developmentally she is on right on track. She just turned 14 months, is walking around allover, can say a few words, can put correct shapes in shape sorter etc. She underatands everything I say and can shake her head yes and no to answer me. I hope it was the virus also but she had absolutely no fever and the virus was on its way out when she had the seizures so the doc doubts it but who knows. We still have to see a paed. neuro and the EEG results are not in yet. She is pretty much back to herself now except for the phenobarb which made her tired but now makes her hyperactive and accident prone (no co-ordination)-not a good combo. Was your son's EEG neg or positive? I think I am getting paranoid now also, she has started making this noise in her throat which is probably just a 14 month old knowing she can make a funny noise in her throat but I keep looking at her like it's a tic or something.
Thanks for the advice. i feel much more "normal" on this board where people understand what I am going through.