hello everyone - i need help but im afraid to ask and dont know where to post this ?

[bubs82]

Hi all !
I'm not sure what to do but I'm sick of googling and would like real opinions...
My little boy is 13 weeks old this Thursday and a hospital appointment yesterday has left me lost and confused. Basically I had prolongued rupture of membranes ( nearly 4 days ) maternal fever of 38.9 and infection ( chorioamnioitis ) at 37 weeks and had an emergency c section. They couldn't find his heart rate after the epidural and it was overall pretty horrific. He was in SCBU for a week.
Anyway he doesn't breath properly, his chest muscles still retract. They thought lung damage but xrays didn't show this. Now I'm being told he has poor muscle tone , that he clenches his fists ( does he do this a lot ? ) and he prefers his right side. Am I right in thinking they now suspect cerebral palsy? I was too shocked to ask questions? I have to go back in 3 months as well as see a heart specialist. My little boy seems bright, alert, smiles loads and coos - but he does have these things the specialist discussed at times, but surely its to early to say his fists are too clenched - he does open them ?? And he does seem to prefer one side but can be coaxed to turn the other way ? I feel total panic not knowing x

 

[sun]

Don't know how much help this is but but my son has hypotonia (low muscle tone) and hypermobility of the joints as well. I have found that it is really hard to guess what the outcome will be when they are still so young and just starting to develop. When my son was 3 months he was quite floppy and did not have any head control/couldn't do tummy time at all. It is also common for children with low tone to have feeding issues - my LO had problems feeding and doing other things surrounding the mouth - smiling, babbling, speech etc. How is your LO with these things?

I agree that the fists clenched thing does seem a bit early, but maybe they are looking at the whole picture. If it was just the fists, then they probably wouldn't be too bothered by it.

My son is doing so well now though - so it isn't the end. It was hard at first not to compare him to other kids of the same age, but now it's easy. He is a dream and the light of my life! He is a bit slower and clumsier than the other kids now, but so much closer in his abilities than he was at a year. Are they thinking of physio or similar? It helps so much xx

 

[bubs82]

Thank u so much for replying. It's frustrating because as u say its so early nothing can be confirmed or ruled out. He is smiling lots and holds his head up a lot, and feeds no problem but does have reflux which he is on ranitidine for, I'm not allowed to reduce this til at least 8 months. He is my first so really can't identify what is normal or abnormal he is being reviewed at 6 months so I feel I'm left to worry and wonder over every milestone . He was very floppy at birth, and this lasted the whole week in scbu. But now he doesn't stop moving when awake it can be hard to hold him - is he hypertonic possibly ? He does open his hands sometimes and bats at toys but doesn't make any attempt at grabbing anything - but surely its too early to say its a problem? I'm wondering if the nature of his birth is making them suspect all these things... but looking at the positive flip side he is being closely watched, I'm not having to fight disinterested gps ??
Reading your story has given Me hope that even if he is diagnosed with problems he can still learn and develop at his own pace, that he is still my little boy and he can enjoy life - ur son sounds amazing thank u xx

 

[Foogirl]

Cerebral Palsy is such a wide term and covers a whole range of disabilities. It would be very unusual for them to even suspect it at this stage. I was told there is no real indicator of CP until the child reaches about a year old. From there it is a waiting game to see how development is affected (or not) At the point there is a good reason to suspect CP, usually an MRI will be carried out to ascertain what damage there is to the brain.

My daughter was formally diagnosed just prior to her second birthday after having had the MRI scan. We were aware at about 13 months she wasn't keeping up with some gross motor skills. She wasn't crawling or sitting well and as time went on, she wasn't developing at all. She walked with support but in a very awkward way. Her Neonatal consultant decided to go for a scan to formalise what they were thinking. From about 13 months she had regular physiotherapy and to be honest, until very recently her treatment didn't change after the diagnosis. If you think your LO will benefit from physio, push for a referral. You can do this through your GP. Make sure you are still in contact with a health visitor and start to look in to what services are available locally. Being "in the system" is invaluable. We were already there because she was premature. We have had to fight for some things but not for others.

When it comes to milestones, Abby met some early, and some late. She is way ahead for speech and cognition, she's been talking in sentences since about 18 months, just turned 3 she is starting to learn to read. She is clever and articulate and determined and bloody minded. She is my life, she is my joy, she astounds, amazes and humbles me every day. CP is not the end, it's just a different beginning. Life will be difficult, of course it will, but with all those lows, the highs are so much higher.

When we left neonatal, we knew Abby had cysts in her brain. But, we were told, these are incredibly common and a baby's developing brain can grow round them and they cause no problems at all. Or, given time, it may be Cerebral Palsy. The best piece of advice I was given, and I will give anyone in a similar situation was, "take her home and enjoy her, what will be will be" I had a whole blissful year of being a "normal" mum. Doing the same baby things as all my baby mum friends, having the same problems, the same fun, the same questions and knowing what worked for everyone else would also work for me. I look back on that year and am so glad I was able to experience parenthood the same way as everyone else. I now am the parent of a child with Cerebral Palsy and would love to face the same niggling issues as most other parents!

 

[bubs82]

Thank you foogirl ur story is very insightful.. and Cp really is such a broad term. He is a happy little boy and I so want to enjoy this time together. He has become my world and I'm so grateful he is alive as we nearly lost him . You have gone through so much with your Lo but she sounds amazing. Trystan is seeing a heart specialist at the end of June to check for damage as they can't explain his current symptoms but I want to feel prepared this time, you know? It looks like I have a long wait for answers I just hope I can cope with whatever is thrown at us. Thank u for taking the time to tell your story xx

 

[Marchbaby1]

Hello- I am a pediatric physical therapist so I just thought I'd give you my two cents (I also have a 10 week old baby boy). I think pointing out the things they did are causing you to unnecessarily worry! The breathing (chest going in instead of out) can take some time to catch up and should be unrelated to anything else going on. Clenched fists- my healthy baby boy still has his hands in fists most of the time and that is completely normal for someone your sons age- they are just discovering their hands and will start to slowly open them as they become more aware and their muscles loosen. As long as they aren't clenched shut so much that you never see him open them, I wouldn't be worried and he definitely should not be grabbing toys yet (unless super advanced!). His fists being closed right now is NOT an indicator of CP. When you say he has a preference, what do you mean by this? Is the preference in what way he turns his head/looks? Or is one side of his body kicking and punching and the other is not? It's typical for babies to have a preference as far as which way they want to turn or look. Is he kicking both legs when lying on his back if his head is looking straight up? Same with his arms? If so, that is also not a sign of CP. As someone else said, CP is such a wide spectrum and it can definitely be diagnosed early but the things that you listed do not have red flags for CP at all. Let me know if you have more questions! I know what it's like to worry over every little thing and you feel like you can't just enjoy the process!

 

[bubs82]

Hello- I am a pediatric physical therapist so I just thought I'd give you my two cents (I also have a 10 week old baby boy). I think pointing out the things they did are causing you to unnecessarily worry! The breathing (chest going in instead of out) can take some time to catch up and should be unrelated to anything else going on. Clenched fists- my healthy baby boy still has his hands in fists most of the time and that is completely normal for someone your sons age- they are just discovering their hands and will start to slowly open them as they become more aware and their muscles loosen. As long as they aren't clenched shut so much that you never see him open them, I wouldn't be worried and he definitely should not be grabbing toys yet (unless super advanced!). His fists being closed right now is NOT an indicator of CP. When you say he has a preference, what do you mean by this? Is the preference in what way he turns his head/looks? Or is one side of his body kicking and punching and the other is not? It's typical for babies to have a preference as far as which way they want to turn or look. Is he kicking both legs when lying on his back if his head is looking straight up? Same with his arms? If so, that is also not a sign of CP. As someone else said, CP is such a wide spectrum and it can definitely be diagnosed early but the things that you listed do not have red flags for CP at all. Let me know if you have more questions! I know what it's like to worry over every little thing and you feel like you can't just enjoy the process!

Thank u so so much for this - u have highlighted my exact thoughts and concerns and given a balanced, rational look on it - they frightened the life out of me by highlighting these issues and telling me to watch - it took all enjoyment away and his every move has been over analyzed to the point where I'm driving myself crazy ! In the last few weeks he has really come along, his hands are relaxed and open and he studies them intently, and he seemed to have preference of using the right side of his body, turning to the right and moving his right arm and leg far more than the left. But it has balanced out, he is using both sides and his retracted breathing seems less defined! He has a heart specialist appointment next thurs to rule out any structural problems and is being reassessed at 6 months in regards to his muscle tone and milestone achievements etc. But I feel far more positive and able to deal with what happens now.

Thank u to everyone who has taken the time to help me xx

 

[Peanut78]

Sorry you have been put through so much worry, sounds like your little lad is doing great

If you are concerned, or even for peace of mind - maybe push to get a referral to a paediatric physio. My son has other issues, but even before he was actually diagnosed, I found the paediatric physio was actually the most knowledgable on identifying and flagging what was "normal" and what wasn't. My son was initially misdiagnosed by the paed and neurologist and it was our paed physio who actually flagged that the diagnosis didn't "fit" with how my son presented, and he was subsequently re-diagnosed with a review of information (and much to our relief given a much, much less severe diagnosis).

I also think paed physio's have a lot more detailed experience with children who have CP and would be able to tell you much more.

IF your son indeed is deemed to have CP, early intervention can make a HUGE difference and he should be referred to a paed physio in any case...