Hi there, first off let me preface this by letting you know that both the neurologist and ped have stated Kai has mild CP. It is just so confusing to me and I am having trouble determining what is just him being a 'normal' infant and what is indicative of CP. Secondly, let me say that I know how lucky we are...how lucky he is. There are many many things that could be wrong and I recognize that and am appreciative for what is right. Our story....

So turn the clock back 7 months.....my 18 month old son JJ was dx'd with Type 1 Diabetes (insulin dependent) require a grueling regime of blood checks every 2-3 hours, counting carbs, calculating correction factors and insulin dosages, no snacking between meals and shots and administering 6-8 insulin needles a day...oh yeah, and I am 36 weeks pregnant at the time. 5 weeks later my precious Kai is born, healthy and full term. After a week I can tell something is wrong...12 days post birth we are in the hospital with Kai having seizures, septic shock and bacterial meningitis requiring more medical tests and procedures than I have ever had in my 38 years of life. Prognosis is good, caught the meningitis super early, he looks good, feeds well, all primary responses seem to be well intergrated. Everyone is pleased and aside from a confusing CAT scan where the word eschemia was improperly used by a resident, the prognosis is coming up roses. Fastforward 3 months....Kai, now 4 months old has his right hand clenched in a fist and his right eye is squinty. Ped states he has CP and sends in a referral for OT and PT. 2 months following (Kai is almost 6 months old) we have another appt with the neurologist...I mention Kai is meeting most, if not all of his 6 month milestones but has a tendancy of hitting himself repeatedly in the side and belly with his outstretched right arm when excited or upset. She notices he also `sometimes` is clenching that right hand. She confirms the CP diagnosis. OK....I am not a doctor and I am certainly not a brain surgeon....but it just seems to me that this `might`be normal infancy tendancies. Kai is the sweetest thing...we passed all audiology exams, his vision and tracking is good, he is socially responsive and appropriately so. He won`t drink from a bottle and won`t tolerate any solids yet. He will only sleep for 2 hours at a time (yes, even at night) and gets highly aggitated if I am not close by. he also suffered (and still may be suffering) from reflux pretty badly. Now, these needs could be because when he super sick and in the hospital I stayed with him 24-7 and cuddled with him every night on those horrible hospital cots. Or it could be because he just needs that. Or it could be something else.

No one can confirm anything....and it is making me mental. I can handle it if I need to....I can be strong and do the work. But I just need to know. The OTs and PTs won`t be able to see us for another 8 weeks. I hate this waiting. The fisting...the right arm repetitive banging...the squinty eye....the high emotional sensitivity...is it just an infant thing, or does it sound like I`ll be a regular on this board. If you can help, share some experiences etc etc I would really appreciate it. They have told us that the next 6 months we will see more tone issues and the problem areas will be clearer. Help please if you can. Many thanks.

Hello,

I don't think anyone could tell you for sure if it is CP or not since none of us are doctors. He does sound like he has some tendancys of CP but CP can be so many different symptoms and things and there a so many different degrees and kinds it's hard to know.

Our son started with a weak trunk and spastic limbs. He is always fisted in his left hand and sometimes is in his right. his right side seems to be stronger. His hearing is fine but he has trouble with eye sight although some CP are fine with both and some have problems with both.

Ben does have his spasims and hit himself accidentally. Ben does not have seizures but we know they could happen later on.

I will say if your son does have CP it is a grieving and learning process. You will start out saying it is mild and hopefully that is true. In our case we said well maybe he will just walk a little different and have now come all the way to accepting Ben will most likely always be in a wheelchair. I found I started saying milk and have come all the way to fairly sever. The more doctors I saw the more I understood my son. Physio and Occupational helped by explaining to me how much to expect from my son.

I hope your son is fine but if he has CP you will make it through that too. Its frustrating not being able to know how much your baby will be able to do in the future but you'll get there.

Hi
Our 3 year old started having seizures within a day of being born and after a week in Special Care was eventually given an MRI which confirmed he'd suffered a stroke at birth. The MRI showed damage to the right side of his brain which we were told meant the left side of his body would be affected. We were told he had a 50%chance of "significant problems"but it would be apparent by the end of the first year. He had no more seizures after the first few days but continued on anti-convulsants for 6 months. He was then weaned off and nothing since. He reached all his milestones and we relaxed. He began to walk at 18 months and when months later his walking was still awkward (had tendency to go up on tiptoe on left side) we asked about physio. We had also noticed that he showed a marked preference for using his right hand, though was able to use his left and would when he had to). When the physio visited she referred to him as having "mild cerebral palsy". It was the first time anyone had used this term regarding our wee boy, we had no idea he had this diagnosis, and were devastated. Slowly though, I realised that the diagnosis was irrelevent. This was the same wee boy who was still doing brilliantly, if a little unsteady on his feet at points! The Physio also explained that CP is a blanket term used to describe someone who has these problems with muscle tone and can vary hugely. Our wee boy is mildly affected and should lead a normal life, even if he will never be able to run or excel in sports. I have struggled at points with this but then remember the initial prognosesandcount myself lucky..Hope things turn out well for you too.