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my baby might have epilepsy what should i do? (PIOG sorry a little long) *update*

Posted by on Nov. 3, 2008 at 3:11 PM
  • 5 Replies

about a week or two ago after i was done feeding my 8 week old son he started shakeing all over so i thought he was cold so i wraped him up in his blanket then his right arm and right leg started twitching really bad and he started having trouble breathing i freaked out (hes my first baby) called my MIL who was on her way home from work and she calmed me down and when she got home aiden was breathing normal again and there was no twitching at all.

we called his dr. and she said she wanted to him to get and EEG test and an MRI test. so we whent to the hospital to do the tests. we weren't sure if the drs would have to give him something to sleep so they could do the MRI or not so we had to stop giving him formula and give him only pedialight then we had to stop giving him that and only give him his pacifire. he was not a very happy baby. we did the EEG test first then the MRI luckly he fell asleep on his own so the drs didn't have to give him drugs (if they did have to give him drugs he would have to stay overnight at the hospital)

a couple of days ago we got both test results back and the MRI is clear but the EEG was "abnormal".

his dr thinks that he may have epilepsy and she wants us to see a neralagest. hes been geting these blank stares,smetimes shakes,he crys a lot, and it looks like he has trouble breathing at random times druing the day then hes back to being normal i'm worried that hes having seizures and i don't know what to do. his dad and i both have epilepsy and my MIL has it to.

i feel really bad and i feel like i'm a bad mom and its my fault that he may have epilepsy. dose anyone eles have epilepsy or kids with it?

i'm sorry this post is so long

 

*update*

my DF and i when to our sons dr for his normal check up and first shots and we talked about the seizures. we have an apointment with a neralagist on the 19th to have him looked at.we did get some  anti-seizure meds for him i don't remeber the name of it but its a red liquid and it seems to be helping him. he has to take it twice a day once when he wakes up and then when we go to bed at night. his dr says that everything eles is healthy wich is really good so i'm not as worried now.when she put him on his tummy hhe was starting to make the crawling motions so she said hes allowed tummy time now hes two months do babys start crawling at two months? hes also sarting to  laugh and smile a bit. thank you all for replying your replys really helped and i don't feel like i'm a bad mom anymore.

 
 
by on Nov. 3, 2008 at 3:11 PM
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Replies (1-5):
Danesmommy1
by on Nov. 3, 2008 at 5:44 PM

OMG!  I'm so sorry!  It's not your fault!  And there are meds for epilepsy.  A lot of people have it and have normal, happy lives!  I hope the doctors get everything figured out for you!

Elke

rent3798
by on Nov. 4, 2008 at 7:03 PM

Hi there!

You are not a BAD mom. If anything, it's great that you are so aware about what's going on with your baby. The best thing you can do is just be there to comfort your son. I have been epileptic for about 4 years now. I was a high risk pregnancy in part of my epilepsy. Did you take medication during your pregnancy? The EEG is what will usually show abnormal results but it's great that the MRI came back clear (because that rules out other things). I don't know if they have this for babies but I once had a 24 hr EEG. The wrapped my head in the electrodes and everytime I would twitch or do something related, I would have to write down what I was doing when it happened. Did your son have a traumatic birth? Is there anyone that can keep you company during the day when you are with him? If you live in or around Phildelphia, try looking for a doctor at children's hospital. If not, I would check out your local children's hospital for the best doctor. Feel free to message me if you want to talk. Sending good vibes your way!

Nobull
by on Nov. 5, 2008 at 11:25 AM

My son had epilepsy.  He is now 25 and seizure free.  Please do not feel you are a bad mom.  I kept after the docs about him, but he had petite mal seizures which are harder to see, but still as damaging.  He only had a few grandmal when he was an infant.  keep on the docs and push till you get results.  Because of the lack of meds in the early years, he now has short term memory loss, but it is easy to deal with, just got to remember to write it all down.  He has a son who is not epileptic.  If you need to talk feel free to pm me anytime.

 Life is not simply to Live, but to love and be Loved

Love2BAvasMom
by on Nov. 5, 2008 at 11:45 AM

You are in no way a bad mother, but it is so hard to watch your child be sick and not be able to help in a way that you want to.  My daughter got meningitis about 2 years ago when she was 2.  It started out as a cold and then her glands got really swollen and she just laid around almost unresponsive.  We took her to Childrens Hospital of Philadelphia (CHOP).  After they diagnosed her they started her on meds but after no improvement for a couple of days and she seemed like she was in a whole lot of pain they weren't sure what was going on.  The finally realized that the meningitis had turned into something called ADEM which caused her spinal cord to swell along with her brain, she then had a seizure.  We had just gotten her back to her room after they tried to conduct a hearing test to make sure nothing was damaged, I laid her down to take a nap when her father said to me, why is her eye twitching like that and I thought maybe she had just gotten something in it, then her whole face started twitching and her whole right side went stiff.  It was the scariest thing I had ever experienced.  The doctors luckily were able to solve the problem and put her on medication for seizure and we haven't had any problems since then.  But I know how you must feel watching your baby go through that and not being able to do anything besides wait and see if everything turns out for the best.  But please don't think that you are a bad mother because you are doing everything that you can.  Pray that everything will be ok, and put it in God's hands and he will surely make it all better.  And I am sure the doctors will do everything in their power to make sure your baby is happy and healthy.  I will keep you in my thoughts and prayers.  Good Luck!

Love2BAvasMom
by on Nov. 5, 2008 at 11:48 AM


Quoting rent3798:

Hi there!

You are not a BAD mom. If anything, it's great that you are so aware about what's going on with your baby. The best thing you can do is just be there to comfort your son. I have been epileptic for about 4 years now. I was a high risk pregnancy in part of my epilepsy. Did you take medication during your pregnancy? The EEG is what will usually show abnormal results but it's great that the MRI came back clear (because that rules out other things). I don't know if they have this for babies but I once had a 24 hr EEG. The wrapped my head in the electrodes and everytime I would twitch or do something related, I would have to write down what I was doing when it happened. Did your son have a traumatic birth? Is there anyone that can keep you company during the day when you are with him? If you live in or around Phildelphia, try looking for a doctor at children's hospital. If not, I would check out your local children's hospital for the best doctor. Feel free to message me if you want to talk. Sending good vibes your way!

One more thing I want to add... the Childrens Hospital of Philadelphia (CHOP) is amazing.  They have the best doctors and will truely make sure that your baby comes out of this traumatizing ordeal healthy.

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