introduce myself and my son

Crystal - posted on 02/23/2010 ( 9 moms have responded )

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on Aug. 15th 2008 my son was born at 7;30 am. he weighed 8lbs and was 21 1/2 inches long. he was delivered by c-section and there was a vaccum used to help get him out. my mom noticed within a few hours of his birth his his arms shaking. the doctor said it was just normal newborn startle reflexs. so WE asked no more questions and just moved forward. the next morning caleb was a lil over 24 hours old, he had his newborn pictures taken at about 12:30pm then about 2 he had his first "episode" i was holding him talking to sum friends that had came to see him and was trying to get him to wake up so i could feed him his bottle. i decided to wait a few more mins and put him up on my shoulder to see if i could wake him. i got this feeling in my gut i brought him dwn to try and feed him and the more i looked at him the more it seemed he was turning a greyish blue color, i sat there for a min and my husband must have seen the look on my face he asked whAT was wrong i told him''Calebs not breathing hes turning blue and his eyes are rolled back in his head. just as my husband got up to take the baby. caleb went completely limp in my arms at that point i thought i had lost my baby i waited 9 months for. the nurses came rushing in and tried to say that he had to of just choked on sum formula but i tried to tell them that he hadnt drank any of his bottle. after about 3 mins of patting his back and them rubbing it the realized that he hadnt choked. they took him in the nursery to keep a closer eye on him and said they would only bring him out to me at feeding time and a nurse would come watch me feed him and sit to make sure that he didnt ''choke'' this time. well the next feeding time came and they still hadnt brought him to me so my husband went to go see what was going on and the nurse said the special care nursery dr was coming to talk to us. the dr came in and told us that caleb had had another ''eposide'' so they were gnna admit him to the nicu to run sum tests and keep a close eye on him. he had a bazillion tests ran on him, they at first thought he had a heart condition when that came back fine they went on to think that his respitory system was that of a premie. so they put him on caffine and he kept havin epsoides. so they did mris and ultrasounds of his brain to see if the suction vaccum had caused a hemrage which they said was neg. so they did a eeg and thank god he had a epsode during it and they found out that my son was having seizures and put him on phenobarbital. he is still on it and is 19mths

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Annette - posted on 03/04/2010

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Aww thanks Crystal. Usually when the Doctor doesn't have a name for the type of Epilepsy, or the EEG doesn't show a clear pattern to associate with an Epilepsy they label it Seizure Disorder. Not saying that is what has happened but it sounds like they aren't quite sure yet.

Oh gosh,, I read EVERYTHING I can find (and understand) about the human brain. I am lucky I have a built-in tanslator for the tough stuff (DH was going to be a Doctor and was tutoring Biology, Chemistry, Physiology etc). So whenever we are at the Doctor I ask him specifically what his findings were. I have a binder with all of Bug's medical records in it and I take notes. Then I look it all up with an open mind. Yes, I am his Mother and I absolutely adore the boy, he is my heart, but if I can not make a decision with my logic too then I am not helping him find a solution. I DO go to:

http://www.ninds.nih.gov/disorders/epile...
http://professionals.epilepsy.com/homepa...

I print out what I want to talk to him about and then we talk about it. He is frustrating me at the moment though. He thinks we are done testing. It took me 5 months to get him into a Geneticist and we have only done ONE test and that was for the basics! There are a lot of genetic tests for seizures and we haven't done ANY of them, so why would he think we are done? Argh.

It's great to find a Nuero that respects the parents. Congratulations. It shouldn't matter what kind of insurance you have, they should still respect the parents and the patient. We had one that didn't even touch our son and was with him for 5 minutes before he said: It's JUST Autism. I will treat his seizures but he will have to go to the behavioral unit for the rest.

Just? What an a$$. We left and never went back.

My suggestion is to ask for a copy of Caleb's records so you can read for yourself what notes the Doctor has written. Sometimes they will ask for money to get the records, I tell them: Oh I have a neuro in Provo that wants a copy today and I was going to take it to her as soon as I left. I usually get it for free at that point. :) And it's MOSTLY true.

Off I go to keep the kid from eating. Oy, this is gonna be a fun. :)

Here's Bug's story: http://isthisbug.blogspot.com/2009/06/ab...

Good luck tomorrow!

Crystal - posted on 03/04/2010

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I have a friend who's little boy has autisim. So I kinda understand what u mean. u and ur lil man will be in my thoughts and prayers throughout the day today.do u know of some good websites to look at to research on seizre disorders? I have tried and really haven't found anything I didn't already know. In ur thread u mentioned sumthing about the tempral lobe not bein fully developed until the mid 20's. I don't really know a lot about the tpye of seizures my son has. His neuroligist has told me its a seizure disorder, that's the extent of an explaination I get. We have been thru 2 neuroligist his first one which was the one who saw him in the hosptial. We had our first office visit with him and it was 5 min if that caleb was only 2weeks old. I didn't like how the dr treated me and caleb I think he was rude becouse caleb is on a medicare type insurane. So I moved him to the dr he has now. Up at akron childrens hosptial. Our first visit with him was 2 1\2 hours long. Very indepth dr and listens to everything we say and takes our concerns into mind. I will post what happens at the eeg and apt tomarrow. Have a great day and god bless u and ur family.

Annette - posted on 03/03/2010

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Being a Mom of a child with seizures can feel very isolating. My little guy doesn't talk either and he has been labeled Autistic. He looks completey normal and, in fact, is very beautiful. He attracks people to him and they say Hi. He turns away with a smile. I spend a lot time talking to complete strangers about how he is not being rude but he doesn't understand. I have been through a bit in my life and his condition is, by far, the toughest thing I have had to face. And it is also very rewarding. Bug has an MRI tomorrow. He has something called intermittent anisocoria...when he has a seizure now one pupil stays dialated for hours or days. Its a new piece of the puzzle.

I will be thinking of you on Friday. Temporal lobe seizures are yuckie...BUT in my course of learning about the brain I found that the temporal lobe is not fully developed in males until their mid 20's...considerably longer than first thought. Hopefully he just has some growing to do.

Angela - weening is very scary stuff but if it could lead to less medication or an answer it might be worth it. I will go read through your thread but I do not envy the decision you have to make. No Mother wants to see their child seize especially if it can be prevented.

Giant hugs to you Moms!

ANGEL - posted on 03/03/2010

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yes I have my daughter is still on her medication phenobarbital.Trinity was born September 3 2008 at 434 pm weighted 7lbs 9oz health as can be until we took her home that is when Trinity started to have seizures at 4 days old and the last one was August 2009.The doctor is talking about weening her off her medication which I am a little scared about.

Crystal - posted on 03/02/2010

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Jodi, yes I thank god daily for the way things happened with the whole seizure situation with caleb. And I am very blessed to have stubbled across circle of moms. I felt so alone none of my friends have been thru what I have with caleb and to know there are others out there that have and be able to talkj and share concerns and milestones has lifted a huge weight off my shoulders. When things start to look like I'm not getting anywhere... my dad has reminded me that tru God and prayer all things are possiable. And while he may still have seizure it always could be a lot worse. So I have come to see the role god plays in my little ones life daily. God bless u and ur family and thank u

Crystal - posted on 03/02/2010

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Annette thank u for sharing a bit of ur story with me. Caleb tends to be seizure free as far as I know on his meds he does tend to stare off quite a bit but the dr says as long as he looks when I say his name that its not a seizure. But he does it soo frequently its hard to tell. He has an eeg on Friday to check and see if there is any seizure activity in the areas it was in the last few times. When he had the seizure in the hosptial the day after he was born it was in the tempral lobe on the left side. Then he had another eeg about 3 or 4 months after that and it showed new seizure activity it not only was still in the tempral lobe it also was present in the left frontal lobe. The eeg Friday is to check to see if he is haveing seizures in his sleep like we are thinking. I totally understand the feeling about feeling so helpless to have to watch ur child go thru sumthing like that and feel as they r being takin right out frm under u and there is nothing u can do to protect them... I had a hard time dealing with it I felt as though maybe it was sumthing I had caused but I know now that it had nuthing to do with me. God bless u and ur lil guy.

Jodi - posted on 03/01/2010

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Crystal,
My son was 9months when he was diagnosed. Thankfully you were still in the Hospital so they could help right way.
bless you

Annette - posted on 02/28/2010

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Crystal, how terrifying! Bug hugs!

I watched our boy have his first T/C when he was just shy of three years old. I remembering thinking: I am watching my son die. I watched him laying on the gurney, looking so small and I felt so amazingly helpless. It was my job to protect him, and to keep him safe, and now that had been stolen from me. All I could do was to be supportive when he needed me and be his advocate. So, although I have not held my newborn and watched my life change, not once, but twice, I do understand somewhat what it feels like.

Is your little one seizure free on his medication? Does he have breakthrough seizures?

All my best to you
- Annette

Crystal - posted on 02/26/2010

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Anyone else been thru this.....