I am new to this forum and am desperate for feedback! I've searched all over the internet to find someone that can comment on our situation. We feel very alone in this as we live in a small town, so are unable to meet with other parents of special needs children. Our son is 20 months old and in the process of being diagnosed. Our pediatric neurologist feels he may fall under the umbrella of mild cerebral palsy, but we are now waiting on the results of genetic testing before a diagnoses can be made. The whole process has been very difficult as one pediatrician felt he had no signs of CP and that our son was just not walking or talking because he is cognitively impaired (they did a psychological assessment at 18 months..which he scored low on as he was in a phase of wanting to throw anything and everything. He now rarely does this. I don't understand how an assessment at that age can be at all valid). Anyway, his diagnoses was hard to hear to say the least, but as time has passed I truly question if it has merit at all! I tend to think "the doctor always knows", but I am starting to think otherwise. Anyway, we went back to our pediatric neurologist with this information and she said she clinically disagrees with his diagnoses. I have spent a ton of time online trying to find out as much as I can about CP and I always come back to it as it seems to "fit" our son's symptoms the best. I just want to explain his symptoms to see if anyone can relate to this. Our son has been late to meet milestones, but generally gets there at about a 7 month delay. (although he has never pointed at something when asked, but will LOOK in the direction of the object, and is not yet able to stack blocks). He is 20 months old now and is starting to walk. When he first started to push a cart, he would slightly drag his right foot, but he does not do this anymore. Some specialists can detect slight hypertonia in his feet and hands. He has always struggled with balance and seemed very stiff when he started to walk. Over time this has improved. We notice his fingers have a tendency to bend under at the knuckles - usually only when he is crawling or sometimes when he holds his bottle. When he gets tired, usually during storytime, he has a tendency to fist his right hand. The rest of the time, he hands and fingers function normally. He has had 2 MRI's which have both come out clean, but I know that an MRI does not always detect CP. He tends to sit cross-legged (scissor) which I have read can be a symptom of CP. He is not talking yet, but babbles. Does this sound at all similar to anyone else out there? I would appreciate any comments on what mild CP has looked like for your son/daughter as a toddler. We are worried for our son's future, but try to keep telling ourselves there is lots to hope for.
Hi there. I understand the feeling of loneliness since we also live in a small town. I am sorry that you have to be at the start of the diagnosis journey, it's a rough place to be. When we realized our younger son was delayed and had hypertonia issues, I self diagnosed him with CP since I thought he met all the signs for it. And our pedi agreed. We got an MRI and saw a pedi neuro who said it wasn't CP and to look at genetic things. That started us on the trail of a developmental pedi, who took one look at our son and recognized physical characteristics of Fragile X Syndrome. So blood was drawn and sent off, and sure enough he has Fragile X. The wait for results and a definitive answers is hard, so keep reaching out. Hopefully someone here will be able to help you a little more than me!
I am probably not much help but just wanted to send well wishes your way! I know how frustrating it can be to know that something is not quite "right" with your child but yet still not be able to name what it is. My daughter will be 4 in April and is still undiagnosed. They think she has some type of syndrom just not sure of what. It is a very frustrating thing! A lot of her symptoms also conincide with a CP diagnosis. Hopefully you find some answers soon. Good luck!
Wife to Robert 8-9-08 Mommy to Lani 4-24-09 and Cambria 3-25-11 and Brecken! 6-26-13
Like others above, I know the stress of waiting for a definitive diagnosis. Although in some ways it is vitally important, in another sense, it doesn't really matter that much. What I mean is, you will love him and get the best care and therapy for him, no matter which label best fits. Do you see therapists now? Generally, occupational, physical, and speech therapists can work with individual symptoms, even before a specific diagnosis. It sounds from your post that you already have services in place. I know the waiting for answers is hard, but really, will the dx make much difference to what you are doing? It sounds like you are deeply involved, and getting all the help your child needs. You are doing great, and are a great advocate for your child. Keep it up, Mama! And I hope you get meaningful answers soon.
Rhu - mother,grandmother,daughter,sister,friend-foster,adoptive,and biological;not necessarily in that order. Some of it's magic, some of it's tragic, but I had a good life all the way (Jimmy Buffet)
I appreciate all of your responses. Thanks so much for taking the time to add feedback! Yes, we have been referred for therapy and we were seeing a physical therapist, but because we live in a small town, the services are poor. They have only been able to see our son about once every 4 weeks and it seems like they don't know how to help. The pediatrician that didn't detect CP said that his therapy should be to "just let him play." The pedi neurologist, however, said that therapy is critical at this time (especially before the age of 3 as his brain is malleable), yet she said to talk to the therapists about what the therapy should look like. Unfortunately, they tell us to "let him play." I feel like we are on our own. He doesn't yet have a diagnoses, but we've already ordered books on CP so that they can hopefully offer some advice on therapy. We've been working with him daily, just doing the things that we think will help...walking with him a lot just holding his hand, trying to get him to take a few steps in between short distances on his own, lots of storytime and repetitive phrases, while introducing new words every so often, taking him to the pool, giving him lots of baths (read that this helps those with CP), tons of walking with him up and down stairs. Does anyone have any other advice for therapy?? There are no private therapists in our town, so now we are trying to get private services in a town 2 hours away! We have also been referred for speech therapy in this town as our local speech therapist is completely booked and we are on the waiting list. So, we've ordered a book to help us do it ourselves. I'm very frustrated by the medical system...which says GET THERAPY and then is so full, they just put us on waiting lists! This is what it is like to live in a town in Canada.