Sooo here it goes...
We have a dx for Edwin.
Today at his 1 year appoint with the pedi I mentioned that I was concerned about his low tone in his trunk...he is 8 months old corrected age and still can't sit up. I mentioned that sometimes when he is on his back and brings his knees up they cross...scissoring. I know what this could mean. I told her that I would like to have more intense therapy for Edwin to work on his low tone and I wanted a pedi neurology referral...I wanted a nerological assessment. Without batting an eye she said "I'll just make the diagnosis of Cerebral Palsy." Although this is what I was getting at, it did sting a little to hear that. She said it would help with getting him more services. More services is what I want, and I have always prepared myself for the possibility that both Serena and Edwin would be developmentally delayed and possibly never be able to do some things, but it did scare me a little. I got a little teary eyed later in the day and I am choking up a little now, but I did not break down crying.
Now I don't want to be misunderstood as a parent who is anti-disability. I am not. I just want life to be as easy and pain free as possible for my children. It would hurt me to see my child not be able to do things he/she wants to, especially if the twin can. So, in a quick moment, Edwin has been diagnosed with CP. The pedi said she does this often so that patients can get more therapy and that hopefully Edwin will do well and "the diagnosis will be proven wrong." She didn't even really assess him herself, she didn't see the scissoring, and only said he does not have high tone. Either way, at this point I am trying to see it as a medical diagnosis that will help Edwin. I called my EI worker today and she is amazing; she has already put a call into a PT that she said is excellent. I hope we can start soon. I just want to do what I can to encourage Edwin to accomplish what he can...whatever that may be.
So right after the appointment I got the call that we have an appointment for Nov 29th with neurology...not too bad of a wait. I asked to have Serena be evaluated as well. Even though she is sitting up, crawling, going from sitting to crawling, pulling to stand, and just about everything else a curious 1 year old does (minus those 1 year olds who are walking), with her history I wanted her to go as well.
Edwin, Sr didn't come to this appointment b/c he had to train. When he got home I told him Edwin Jr. had been diagnosed with Cerebral Palsy and explained why, and how this would be helpful for therapy purposes. He looked a little concerned but in Edwin fashion just continued to talk and smile at the babies while I was feeding them in their high chairs. When I was in the bathroom getting ready for work, I heard him say to baby Edwin while he held him in his lap, "Even if you have Crebable Palsy, or whatever it's called, I still love you." Something about the innocent and naive way in which he said that made me realize that everything is going to be okay...
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11 comments:
I first found your blog through Ashton's page and have been reading for some time now.
My son Nathan will be 2 on Oct.9th and was diagnosed in May of this year with Spastic Diplegia CP. I always knew something was "wrong" but when you hear the words Cerebral Palsy it does make you step back. I shed many tears in the doctor's office that day. My doctor took my hand and said, he is the same little boy that you walked through the door with 1 hour ago. You will treat him the same and love him just as much as you did before I said those words. And she was right. His brothers and I see him for who he is and celebrate every accomplishment along the way.
He is doing really well and Edwin will too!
I don't really know what to say. I'm honestly really surprised. In the blogs I've read it seems like a lot of doctors almost hand out the dx of Cerebral Palsy. All I can relate it to is our own personal experience but in our city the only doctor who ever gives a dx of Cerebral palsy is a neurologist, after looking at MRI's etc. It's also looked at as a lifelong problem, not something the kid will outgrow so they almost never dx a kid under the age of 2-3yrs old because it's so hard to tell before then if a child will catch-up or continue to have problems.
Needless to say a neurologist here would never diagnose him with CP so this is why it surprises me. I'm really glad that our doctors won't just hand out the dx of CP for Dakota. She clearly qualifies as she's about 70% delayed and has severe hypotonia but she's still to o young to tell what the life long impact will be so for now, we're simply developmentally delayed and I'm so glad that's all. We do see a neurologist on Nov. 9th and most likely will be diagnosed with hypotonia but it's unlikely we'll get a dx of CP as our doctors just don't hand those out as freely.
Yes, I was so surprised that she just said that. I was expecting her to say he was developmentally delayed and get us more services that way. I never thought she would just give him the dx. Especially since she did not do an assessment at all. She never even saw his legs cross, and when I had mentioned it to OT they said it could be because it is easier for him to lift up his legs that way and he is compensating. Neither EI, OT, nor anyone from the NICU developmental team thought Edwin had signs of CP if you remember back to our 6 month developmental assessment. Either way, I guess this pedi does this for insurance purposes to get more therapy, and like I said I am looking at it as a diagnosis of delay to help him. I hope the neurologist will have more answers when we go in November, although I don't think I will consent to an MRI because of his lung disease and the need for him to have anethesia. So I guess we just wait...
One more thing. Had I not mentioned my concern and desire for him to receive more therapy, he would have NEVER received the dx. I expressed a concern and just like that she said I'll make the dx. So basically I caused his dx. So strange.
I'm praying for your family!! You are such a wonderful Mommy.
I think this is a massachusetts thing.
My mother's watches Arianna one day per week and that usually coinsides with my mothers psychiatrist appointments - my mother's psychiatrist is also a licensed SW for children.
I was honestly upset Arianna showed no inclination to crawl by her birthday and my mother mentioned this at her therapy appointments and was told in MA they hand out those CP diagnoses quickly because thats how the 'system' works for getting them into therapy. I find its similar to RI but truth be told I avoided asking those questions. She was evaluated for PT and we were told, yes, she is delayed but not enough for services.
Gosh, I was happy and sad at the same time.
I think its good your looking out for those things and I've heard its very hard to diagnose CP that young. I hope that his turns out to be mild if it turns out he does have it!
Are their colds better?
Edwin, Sr. is right: this really changes nothing. And I agree with Emily that this was an odd way of diagnosing Edwin, Jr and that it is way, way too early to tell whether Champ has CP and if so, to what extent. My sense is that it's just for the purpose of more therapy, and this is not a bad thing. In any event, it really changes nothing--you guys are wonderful parents and if it does turn out that the neurologist confirms Edwin's diagnosis, you'll continue to be wonderful parents. Big hugs go out from us to you guys.
Well you know that I just went through this last month... our physical rehab doctor made the diagnosis based on previous history of IVH and the fact that it affected his right side, therefore the left sided a-symatry was not surprising. I too was taken by the DX, and none of our therapists or doctors suggested that this might be his problem. By their reactions to the news, I knew that they were thinking it. Why they never prepared us, I just do not understand. I seriously questioned the trust I thought I had built, but eventually decided that Taylor will still do everything that Taylor was going to do. Just now, he would do it even with the CP diagnosis!
Hmmm I have a real problem with this whole diagnosis of CP. I don't know if it is because I am the mommy of a child with CP or what, but this really gets to me. I don't think it is fair or right to diagnose a child with CP simply for the idea of more therapy. Nothing that a PT/OT/whoever does is going to really change much for him.
As for being diagnosed too early I can disagree because we knew at about 8 months correct FOR SURE that Ashton had CP.
When I see Edwin Jr I have never ONCE thought CP.
A doctor throwing around CP ideas like this is absurd and needs to be changed!
Just to echo Sharon. It concerns me as well. Especially since there is a family who has an older daughter whom EI seems certain has CP and her Dr will not give her the diagnosis just yet.
There is little about Edwin that indicates CP other than the occasional crossing of his ankles when he brings his knees to his chest and his weakness in his lower abdominal muscles. I can get him to sit by just putting him in the position and waiting for him to get his balance, although he needs to put his hands down on the ground for balance. I'll try to capture the "scissoring" on video so that those who are familar can let me know. Again, the pedi didn't even take the time to try and witness this or ask about it in detail. Good news is we have PT coming with EI tomorrow and she will be working with Edwin every week and she is suppose to be the best. Hopefully I will have more info then. Thanks for all your feedback, you guys are amazing and always help me through!
And by the way, the colds are just about gone and we are back to orginal O2! The meds kicked in and the kids are doing wonderful. Thanks again!
I understand what you mean about being concerned about what your children can and can't do, I cried when Big Ali told me about this post. Not only for you but for Jordan's future also. I just pray that you continue to be the best mommy for whatever their abilities are and that I can learn to do the same with my son.
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