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She's metally delayed and has epilepsy

post #1 of 19
Thread Starter 
When my daughter was one month old she got the evil illness, bactirial meningitis. the bactiria was GBS. not only did she get this once, but three times.
the first bout of it was horrible... she got brian damage to her left side, and seizures now because of it.
she got it for the 2nd time at 5months old, then again at 6 1/2 months old.

for a hospital stay of 12weeks total. almost half her little life.

So because of all this, she has the brian damage, and the seizures, which have all led her to be very delayed...
she doesnt sit up.... turn..... crawl....

My only hope is that she will some day soon over come it all

~Amy
post #2 of 19
Poor baby. A friend of mine had great success with her son's seizures by putting him on a special diet. It's 80% fat, 10% protein, 10% carbs, more or less. He hasn't had a seizure since I've known him, almost 2 years.
post #3 of 19
No infections or causes that we can pin point here, but my DS is epileptic, he starting having noticeable daytime seizures at 10 months old...though we now know the occasional little tremble he had his whole life was just a different kind of seizure. He has a severe expressive speech delay, a moderate-severe receptive speech delay, a 8 month cognitive delay, and has SID.... I'm sorry you are going throug this, it's definitely hard, but if you need to talk I'm here.
post #4 of 19
Thread Starter 
Irishmommy - thanks for that info! since we upped her dose of the trileptal, she has been siezure free.

Cinder - im so sorry about your son, they didnt figure out what started them?
Is a developmental specialist comign to see him?
post #5 of 19
I've never heard of bacterial meningitis coming from GBS. Interesting. Have they done a work up on your daughter's immune system? It is also highly unusual to have bacterial meningitis three times in a row.

I would be wanting to know why that was happening over and over again.

The only cases I've heard of were related to certain vaccines.

I am so sorry for the pain your family has been through. My own 2 year old has been hospitalized upwards of 15 times. He also has a seizure disorder. Among other things....

I wish you peace and a complete healing.

mv
post #6 of 19
Quote:
Originally Posted by queenamy
Cinder - im so sorry about your son, they didnt figure out what started them?
Is a developmental specialist comign to see him?
No, we have no clue what started them, he has frontal lobe epilepsy.

He has seen a neurologist and been evaluated through early intervention, no developmental peds or anything as of now.
post #7 of 19
Amy,

My dd has a severe brain injury as well, from a hospital error, but we work with the Family Hope center in Philly. They are very holistic and cutting edge treatment for kids with brain injury of any kind....autism, adhd, severe brain injury (like Julia's). I can't speak highly enough of them and we have seen good advancement in Julia doing their program. www.familyhopecenter.com

Quote:
Originally Posted by queenamy
When my daughter was one month old she got the evil illness, bactirial meningitis. the bactiria was GBS. not only did she get this once, but three times.
the first bout of it was horrible... she got brian damage to her left side, and seizures now because of it.
she got it for the 2nd time at 5months old, then again at 6 1/2 months old.

for a hospital stay of 12weeks total. almost half her little life.

So because of all this, she has the brian damage, and the seizures, which have all led her to be very delayed...
she doesnt sit up.... turn..... crawl....

My only hope is that she will some day soon over come it all

~Amy
post #8 of 19
Amy-

Sorry to hear about your daughter. Both of my girls also have Epilepsy, as do I. My oldest has Landau Kleffner. She is currently on Keppra. My other has absence and febrile GTCs. We are treating her with homeopathics.

I'm glad the trileptal is working well to control the seizures.

If you would like another holistic messageboard to find support on that is for epilepsy, try going to CureZone.com and joining their Yahoo Group.

-t
post #9 of 19
Thread Starter 
mamaverdi - The bactria GBS turns into meningitis in babys, alot.. while our stays at the hospital i met a few moms with babys in the hospital for the same thing.

What is VERY rare is that she got is 3 times. you're right.
This was unheard of in the childrens hospital we were at.. and they ran every test they should have, CTscans, MRIs, Leaking, Pockets, Immune, and EVERYthing came out perfect... so she is on antibiotics so she wont get sick, and she'll be on it till she is 1yrs old. And be on the seizure meds for 2yrs.... thats if shes siezure free of course.

We arent happy with just leaving her like that and wishing she deosnt get it again, so we're taking her for a 2nd opinion at UCLA.

Im so sorry about your sons hospital stays ... believe me I know how hard those can be. "Among other things"? whats going on with him??

***********

Cinder - If you see him delayed and he isnt doing things he should be at his age, you should really call the early intervention so they can evaluate him again. I dont want to bug you about this but you really need to help him if this is the case.

***********

RileysMom - im so sorry about your daughter... but this program shes in sounds very helpful!! im so glad you're able to have them near you. sadly im in CA

***********

theatremum - I'm also very sorry about your daughters, but their sizures are under controll, yes?? I hope so
thank you for the site, i'll check it out!
post #10 of 19
Ack, to go into everything that is wrong with my child at the moment would probably take weeks. His history alone is a 3 page Excel spreadsheet 10 point font. And that's a summary. Honestly.

The very briefest I can make it: He was born with a urinary tract obstruction and has kidney damage because of that. He has urethral damage from a hospital error. He has had a PICC line in his heart. He has had 12 UTIs, 2 of which were sepsis. He has had pneumonia 3 times, one of which was treated as aspiration pnemonia. He has seizures. He possibly had a stroke. He has developmental delays. He has very little speech (probably apraxic). He possibly has hearing loss in his auditory nerve. He possibly has a metabolic or immune disorder or both. He has a possible submucosal cleft as well dysphagia and a bubble palate. And it goes on and on and on like this.

But to look at him: he looks basically really really normal.

Second opinions are always a good idea. Not all tests are run properly or even all the tests that need to be run are not run. We've had this experience far too many times.

Keep looking for answer until your find them. They're out there.

Somewhere....

mv
post #11 of 19
Quote:
Originally Posted by queenamy
Irishmommy - thanks for that info! since we upped her dose of the trileptal, she has been siezure free.
kincaid is also on trileptal...we have to up the dose every time he decides to gain weight, but it has worked well for him.
post #12 of 19
Quote:
Originally Posted by queenamy
Cinder - If you see him delayed and he isnt doing things he should be at his age, you should really call the early intervention so they can evaluate him again. I dont want to bug you about this but you really need to help him if this is the case.
I'm sorry, I think I confused you somewhere. Kincaid was evaluated by early intervention, he is getting speech therapy and occupational therapy and he is in a 2 day a week special education pre-school program which will change to 4 days a week when he turns 3...well, he was till school ended for the year, and will be again in September...right now he is going to a summer playgroup that the ST and OT visit once a week through the school system.
post #13 of 19
Thread Starter 
mamaverdi - Most of what you wrote I know nothing about... but clearly they arent good and im so sorry your son, you and your family have had to go through this.
I know when Nadia got the brian damage she also had 3 strokes.. which I think are different from when older people get strokes ??
My daughter also had a PICC line, when she was 1mo old.. then had a broviac at 5months, and then another broviac that stayed in at 6months. Although we cleaned that line EVERYday (heplock etc) it got clogged and no one wanted to take it out for a whole week!!
What are his developmental delays?
So I see also you say possible... now why dont you yet know this? have they not tested him for the hearing loss, and the immune disorder?
Nadia has minor hearing loss.
I dont mean to ramble about my daughter but i just want you to know that I can relate and I feel the pain you've gone through.

******

Cinder - We also up it with weight gain, and/or if she has a siezure.
Have you read the side effects of trileptal? I never did..... and there some things that i wish i knew before.. such as, commen side effect is the eyes twitching alot, and more thurst then normal...

And about your child seeing a developmental program, I think i did read wrong
im glad he is getting the therapy he needs
post #14 of 19
Quote:
Originally Posted by queenamy

******

Cinder - We also up it with weight gain, and/or if she has a siezure.
Have you read the side effects of trileptal? I never did..... and there some things that i wish i knew before.. such as, commen side effect is the eyes twitching alot, and more thurst then normal...

And about your child seeing a developmental program, I think i did read wrong
im glad he is getting the therapy he needs
Our neurologist read the side effects before prescribing it to us...so far though, Kincaid hasn't had any noticeable side effects, and he has been on it for about a year. Our goal is for him to gain weight but not need the dosage increased (as in he gains weight, stays at the same dosage, and doesn't have a seizure)...then if he goes a year seizure free without changing the dose we will start lowering the dose to try and wean him off...so far it hasn't happened, every time he gains weight he starts having seizures again and we have to up the dose...
post #15 of 19
Quote:
Originally Posted by queenamy
mamaverdi - Most of what you wrote I know nothing about... but clearly they arent good and im so sorry your son, you and your family have had to go through this.
I know when Nadia got the brian damage she also had 3 strokes.. which I think are different from when older people get strokes ??
My daughter also had a PICC line, when she was 1mo old.. then had a broviac at 5months, and then another broviac that stayed in at 6months. Although we cleaned that line EVERYday (heplock etc) it got clogged and no one wanted to take it out for a whole week!!
What are his developmental delays?
So I see also you say possible... now why dont you yet know this? have they not tested him for the hearing loss, and the immune disorder?
Nadia has minor hearing loss.
I dont mean to ramble about my daughter but i just want you to know that I can relate and I feel the pain you've gone through.
strokes are different in infants, babies, and children than in older people. harder to recognize. may just be a period of lethargy.

A week? I think I'd be calling my lawyer at day two. But that's me.

His developmental delays are primarily oral-motor, speech, and gross motor.

Possible because they've run soooo many tests and most things come back within normal. The things that don't are still within normal. It makes no sense I realize, but ... alas, it just means more testing.

He is basically a medical mystery.

Luckily I have a new ped who is brilliant. But shhhhhh don't let anyone hear me say that too loudly. I want it to remain true.

to you too.

mv
post #16 of 19
Thread Starter 
Cinder - yes i know what you mean about once they gain weight they have to up it bc they start with siezures again. sadly my daughter is the same. her siezures can be so small at times its hard to notice.... I pray that soon they are able to wean him of the med... I know its hard hun, but stay strong

mamaverdi - About the broviac-- I went to different ERs and no one would take it out bc they didnt know if it had a cuff. anyway i called the doc that was to take it out and they told me my appt was in a week., i told them they realized it would be clogged for a whole week right? and that if ANYTHing happened, such as infection it would be on them. and they said they know, and nothing would happen..... nothing did thankfully.

I know the 'medical mystery" thing all too much... rather, ive heard it all tooo much. but we cant give up.... and its hard on our kids with all this testing and messing with them but it cant just be a mystery.
post #17 of 19
Are you guys at a free-standing children's hospital? In california somewhere.... UCLA is a good hospital, but not a pediatric one....though I have a friend going into pediatrics who I think is there...or was.

Just wow. I really can't believe that it was going to take them a week to take it out. That is so completely unacceptable. Especially with her infection history.

mv
post #18 of 19
Quote:
Originally Posted by queenamy

RileysMom - im so sorry about your daughter... but this program shes in sounds very helpful!! im so glad you're able to have them near you. sadly im in CA
Actually, we are in TX and just travel to the center 2x a year for a program update. We do the actual therapy ourselves daily....they just tell us what to do....

hth
post #19 of 19
Thread Starter 
Quote:
Originally Posted by mamaverdi
Are you guys at a free-standing children's hospital? In california somewhere.... UCLA is a good hospital, but not a pediatric one....though I have a friend going into pediatrics who I think is there...or was.

Just wow. I really can't believe that it was going to take them a week to take it out. That is so completely unacceptable. Especially with her infection history.

mv
Im not sure what a "free-standing" childrens hospital means???

At Ucla, there is a pediatric center. its the Mattel Childrens Hospital.
I trust this hospital the most, i have family who works there and most of my family when ill go there. they actually try their very best and i believe have more knowledge and experience, since people from all over the world go there ya know?

The childrens hospital we were going to BEFORE.... was crap. matter of fact they never seen a case like hers before.... and werent even willing to call around to other docs in the states or anything.
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