To sit and be helpless and watch my baby have a episode in my arms and I can't do nothing it kills me my eyes all…

@nana2611 right and thanks mama I do feel so sad when he first came home they were like everyday I just hold him and pray and rock and talk to him o my do I be scared my husband always tell me I'm so patient I say if I freak out then this house would be a jungle and being in the nursing field working with kids with epilepsy and have it myself I have no choice but to be calm and patient I pray God heal his little body and I can't lie o I'm so stressed out and sleepless being that I just sit and watch him I won't take my eyes off him anywhere I go I have to take him with me I am so scared I've decided I won't return to work this year being he is still so small and I'll return next year he needs me here with him I'm sad I won't be able to go to work but it's well worth if

@optimusprimesmom right when they told me he was the youngest patient ever seen their I got like a weird feeling and they were proud to say it I took him in to the er also and his dr just called me he is back in town and wants to see him tomorrow he had to see a different dr and she referred us to them never again i was highly upset the dr want him seen by a neurologist within the business she sent me way out to a place that's not affiliated with general

@ambrebby2u Poor baby! I just hope they can give him something to stop them. I know how you feel tho momma you feel helpless but believe me he needs you so much during a seizure. I would hold my daughter & cry my eyes out because I was so scared she would turn limp & blue it was scary! Just be strong I hope they figure things out ASAP.

@nana2611 he is a month old and yes they found out they the EEG that they were seizures he had one during it she told me to pay attention to his eyes and they were rolling back she said that's one sign and another thing I noticed like if I turn the lights out cold turkey it's like it shock him and boom. His pediatrician was out of town so they had me see another one I was upset cause his pediatrician will fight for him also his dr just called me this morning seeing how he was doing and I told him he want me to come in this Friday also instead of waiting and he say he will give me another referral with a different neurologist

@ambrebby2u How old is he? I'm postive they can do something to control them. . Have they done a EEG on him? My daughter was only 5 days old when she got her first one. They didn't hesitate to start her on meds they usually don't go on age they go on babies weigh for meds. If I were you I would switch pediatricians & find a nueroligist because every seizure he has can be affecting him in alot of ways. My daughter had about 7-8 before she got her under control & now she has to be in physical, occupational, speech & soon vision therapy! They affect them in alot of ways so act ASAP please. .

@ambrebby2u Good for you. That's crazy that they referred you to someone with no newborn experience. I really hope you find a Neurologist who can help soon! If you can, getting him into a Pediatric Neurology department at a hospital might be the best way to get him treated quickly. Or maybe an ER visit?

@nubianlocs25 @maddiesmommy16 @ladyblauvelt @angelfoodcake @nana2611 @optimusprimesmom thanks ladies

@nana2611 they won't give anything just yet they said he is so young and so little he his the first newborn to be seen in their office a dr referred him to them but I am going to get another neurologist cause I am not about to just let that slide saying he is so you like wtf tell me or do something instead of just saying he is new and this is the first in a baby in his age to be seen there

@optimusprimesmom I asked them if it's something they can give him they reply was we aren't sure cause we never had a newborn patient with it so I'm like ok well a dr referred us here so I am going to find him another neurologist cause I won't allow nothing to be done about my baby and them not trying cause he is the first newborn in their office.

@ladyblauvelt yes I have and I have it also and I also noticed like if he cry for a minute they start like say for instance if I make him a bottle and he start crying I mean screaming then next thing you know boom they are starting to be more spaced out now from when he first started about 3 days after he came home. I want them to give him something he's so small. My mom had to fight to get me in meds now looks like I'm going to do the same

Ok. I will have to ask about one! It's good to hear that he has his last appt soon. I can't wait for that day! I think I'll miss all her doctors. Lol

They diagnosed her with Benign neonatal convulsions.

@nana2611 Yes. Your regular pediatrician would do normal well baby checks, shots, etc. Developmental Pediatrician would see her separately to asses her delays and therapy progress.

I'm glad you have a good Neuro. That's soooooo important. We have our hopefully last appointment in December and I think I'm sort of going to miss seeing him lol.

Do they have any cause for the seizures figured out?

@optimusprimesmom her nuero is amazing! He answers all our questions honestly. & How would that work would she still see her regular pediatrician plus a developmental pediatrician?

@nana2611 What kind of doctor is she seeing? If you don't have a Developmental Pediatrician I would really reccomend finding one. Ours was amazing and made all the recommendations for intervention to our Neurologist who then made the referrals. They also had him take Bayley assessments at regular intervals to track his progress.

Don't be mad at yourself. Be mad at her doctors. Be her advocate and be tough with them to get her what she needs. I switched Neuros early on because I had 0 confidence in ther one the NICU assigned us to. I think it made a big difference in the care we got.

@optimusprimesmom I am so angry with myself because when she was about 2 months old she has a evaluation at a place called Envision they said she didn't need therapy of any sort then at around 5 months old which was last month her doctor said did not evaluate her right so she referred a different place they said she totally needed every therapy because she is not hitting her milestones she doesn't sit up or roll over yet & I am mad that envision talked me into thinking she didn't need it. . I guess it's what I wanted to hear at the time! I'm glad now shes getting the help she needs.

@nana2611 His issue was 3 fold. The seizures were caused by a stroke in his left hemisphere which caused weakness in his right hand and arm. He has hit all of his milestones, and we did do early intervention PT and OT until he was about 18 months old. That was mostly to help him learn to use his right hand and arm. He does great now, but every so often I catch a glimpse of him having trouble doing things with righty. He's left handed and I honestly think that's due to necessity/ease.

@optimusprimesmom I'm curious did your son have developmental delays?! My daughter is currently in physical, occupational, speech & soon vision therapy? I never hear stories about kids being delayed but catching up. .

@ambrebby2u @nana2611 Similar. They should be able to give him something. My son was on phenobarbital for seizures from 2 days old until 9 months. We got super lucky and he stopped having them, so we weaned him off and he's been good since.

Aww

@ambrebby2u do they have him on medication? My daughter started having seizures at 5 days old they started her on Keppra at 7 days old. She is now 6 months old & is still on it. They did have to up her dosage a couple of times but she has been seizure free since April 1st.

Have you done any research on epilepsy and how to prevent episodes? I know flashing things, especially lights can bring on an episode...

Prayers!

@ambrebby2u your welcome

@elijahsmom thanks luv

@pamelawife134 he have epilepsy and no because he is so small and young

Prayers mama

What’s wrong with him? There’s nothing at all that you can do?

@one_coolmama Thanks mama

Prayers for you guys