Post # 1
My baby boy is 5 and half months old now. A little background: he suffered a middle cerebral artery stroke while I was still pregnant with him. The neurologist that we saw said the stroke likely happened 2-3 weeks prior to him being born. We have both had numerous blood tests done and everything has come back normal. So the neurologist said this was an accident. We found out about the stroke when he was 2 days old and was having seizures. He was sent up to the NICU and they did a CT, MRI, EEG, Echo and Spinal Tap. He was released from the hospital at 5 days old and sent home on anti-seizure meds. He was taken off the meds at 4 weeks because he was seizure free. He has physical therapy once a month and she thinks he is doing well. He does favor his left hand a bit more than the right but not too bad. We encourage him to use his right to grasp things and offer toys to that hand first. He has been fitted for thumb supports because he keeps them tucked in often. We saw a pediatric neurologist at our University hospital recently and she said she thinks our son will have some form of cerebral palsy and will walk with a limp and not use his right hand at all. Our neurologist who initially saw him and has been following up with him gives us a different outcome. He thinks he will be just fine. I don’t know who to believe. The pediatric neuro did not have my son’s scans to look at them. She was going off his hospital notes only and an exam in the office. My other worry is that he isn’t really rolling over. He rolls from his tummy to his back once in awhile but won’t roll to get where he wants to go. He just isn’t interested in rolling. He would rather sit or stand on my lap. His pediatrician isn’t concerned and said that since my son is a bigger baby that he has a lot more to roll over. Our physical therapist says he should be rolling all over the place by the time he is 7 months old.
I am so confused and worried. My older daughter never rolled over. She went from sitting to crawling then walking. My other daughter never rolled where she needed to go either.
I always thought that all babies are different and that they shouldn’t be put into this schedule of what they “should” be doing. Maybe it’s different because he has a brain injury.
I guess I am still clinging to the hope that the neurologist who originally diagnosed him told us. He thinks he will be perfectly normal.
I don’t really have anyone to talk to about what happened to my son. My husband is still in denial and we aren’t close to his family. My family has been awesome but I don’t want to worry them.
Post # 3
I, personally, would stick to the opinion of the doctor who has his scans, knows his history and isn’t just there to “see” him / read his other notes. I think that whomever told you that he will have all of these issues without having the medical history on him was totally in the wrong.
It sounds like he is perfectly healthy baby. Can you make an appt to go back to the original doc (neuro) and get his opinion on his progress thus far?
One of my best friends had a baby just shy of a year ago with Downs. They were told he would be this and that, he wouldn’t do certain things, he wouldn’t talk, he would walk late, all of the negative things. Another doctor was really supportive and sent them to special therapy groups, tracks his progress and all that. The little guy is crawling, has said “mum” at a year old and has done 95% of the things that they said he COULDN’T / wouldn’t do at his age, or ever.
Kids are phenomenal little creatures. I bet your little guy will prove that woman wrong a hundred times over. Lots of babies don’t like to roll, HATE it, in fact. I don’t think the things you have described him donig/not doing are abnormal or an indicator of his future development at all. I am not a doctor, but I honestly think your little guy will be just fine. If it makes you feel better maybe you can make another appt with your neuro guy or get another opinion from another neuro for peace of mind.
Keep us updated, he sounds like a perfect little man to me! 🙂
Post # 4
@mrskisstobe: We saw his neurologist’s physician’s assistant the other day and she isn’t recommending any follow with the neurologist who diagnosed him for 6 months.
I think some of my worry is that we have friends who have kids close to my son’s age and they are doing things he should be doing. I just want him to have a happy healthy life and experience everything he can.
Post # 5
You said it yourself that the timeline didn’t work for your previous children. Some kids are quicker to do things than others and it isn’t wrong but its just how the timing worked for them. My brother wouldn’t talk so doctors assumed something was wrong with him. Our family all learned some sign language so we could communicate with him. In the end he was fine, I think we was like three before he ever did talk. You could go to a third Dr. to see what they say since the other two are basically opposite. I would beieve the original Dr more since he was there for everything so far and had all the information.
Worrying won’t fix anything. Just be the best mother you can to him and provide him with the care that you think is necessary for him to live a happy life. I wish your son the best and hope that he is not permanently affected.
Post # 6
Maybe a third opinion would help clarify things for you. What about trying for a specialist children’s hospital?