One Was Surprised....

Hi there. We've been talking on my other thread about our 7 month old FD. I was up till 2 last night researching and I really think our FD might have cerebal palsy as well. The things that I described to you, does that sound like indicators to you? I am going to call her doctor today and her social worker. I don't really know what to say "hey I think L has CP". I feel like they'll think I'm playing doctor or something. I keep having this uneasy feeling that there is something more that we are catching. What do you think? What are your experiences with CP?

One thing that I didn't know (and there's a lot I've learned over the last year).....and something that made me feel much better was this: When kids have CP, the progress they make is the progress they'll keep. Once learned, they won't regress in that skill. My daughter has made vast improvements in her development. She's learned to crawl, learned to stand, is cruising around furniture and the therapist is working to get her to walk (she's already taking preliminary steps!). But her speech? Not so good. She continues to babble---says 'ma-ma', da-da'....but I'm not sure how discriminately she's saying them. She doesn't wave bye-bye yet....and she's 16mos old. She seems to understand what's being said sometimes; and she makes great eye-contact----- Still, other therapists have said not to worry too much yet....that as long as she's making progress in the mobility stuff, she won't concentrate on her speech. I hope so. You're working with EI services, right? What do THEY Say about all of this? Your baby has hypertonia.......is the baby seeming to become more relaxed, or are her muscles staying as tight as they've ever been? EI staff should be able to make some sort of suggestion along the lines of whether they believe she has CP or not. Otherwise, if no one is, ask your pediatrician about it. There's nothing wrong with asking, IMO. :) Sincerely, Linny

Her OT says she is making great progress. She is not as tight as she was and is able to bring her hands in to center. She is able to grab toys with her right hand now. Her left just sort of moves around but won't do a grab action. Her OT has not said anything about any diagnosis. She gave her a 6 month plan to have her sitting independantly and pulling to a stand. At this point it's hard to picture that happening in 5 months. We have hterapy 2 times a week and we do therapy stretches at each diaper change. She is making progress so I am confident she can get there. Our appointment on Thursday with her ped should give more information and insight and hopefully a referral to the neuro. I'm glad to know that what they learn won't go away. That is great. Sounds like your daughter is making great progress! :clap: Hopefully the speaking comes out soon as well.

My DD's therapists have all had differing opinions about her CP dx as well. I have come to realize that it doesn't really matter whether they agree or not as long as the work they are doing with my DD addresses her needs. (Example: The OT doesn't really agree with the dx but she works with DD to get her to use her right and left side equally, so who cares about the dx) As far as age at dx, CP can be diagnosed at birth if it is severe. My DD was 2 yrs old because hers is mild and I waited to see the neurologist until she was 2. I saw the signs starting in the NICU when she had feeding problems and arched her back and seemed stiff. The nurses said it was pain from the methadone withdrawls, so again, disagreement by the professionals. Ultimately, my DD has gotten what she needed even though the "professionals" don't always agree on the cause! Getting the dx in writing does help in getting services though (like pre k through the school district and such) We are skipping over several steps because she automatically qualifies due to the dx of CP. I also think that DD has some sensory issues and a couple of the therapists have said no. Ultimately, I am the one that is with her 24/7 so I am pushing to get some weighted blankets and vests. I figure, why not try and see if it helps!? It is tough playing dr and mommy at the same time! Good luck to both of you. CP really isn't as scary as it sounds!;)

Here's something you might want to try while waiting for the vests---or someone to give the okay for them. One of my children has sensory issues. It's never been dx'ed, but it's surely there. I've never pushed for the dx because we homeschool and what we ended up doing has helped a great deal. If you're able to get ahold of a Sobakawa Pillow (or any Buckwheat one)......put it in a pillow case and place the entire thing in another pillow case, tie it up and see if your daughter will like using that? My DD has used it to hold, knead; at night--- placed on the top of her head, put at her feet, etc. It's made all the difference between a child who can be anxious---to one that's felt much more comfortable. It had nothing to do with having some item to hold...it was because a therapist suggested we buy 5 lbs of sugar or beans, etc....and put those in a sack to make some weight for her to carry around. We had an older Sobakawa--it's been 'her pillow' for years and provided a lot of help/comfort for her. Just throwing that out to consider....and hope it helps in some way... Sincerely, Linny

Sounds like a great idea but I have no idea what a Sobakawa pillow is.:o

Oh. It's one of those pillows filled with buckwheat hulls, rather than foam or feathers or polyester. They stay cool during the summer and warm during the winter. Dh and I sleep with one each night and we love them!!! Sincerely, Linny

My son had/has mixed-tone post-brain injury and never got a CP dx, though it fits I guess. I would be one to worry less about the actual dx and more about what services you can access.

So we went to her pedi today. I talked about all the concerns I have about baby. She said she thinks because things are getting better it probably isn't CP. But because of the tremors she does want her to see the neurologist. So she is going to put in a referral then it is up to the neuro if they want to see her or just put her on a waiting list. I'm glad to know that she isn't totally concerned and that she thinks she may simply just grow out of her delays. This is what I am hoping for too. Her OT said that eaither way she will still do the same things with her so a dx won't really do much. Either way, we're getting things checked out. :clap:

I agree with both of these points. And, this is exactly what my OT said to me and not to worry about a dx. BUT, our Birth-Two co-ordinator made a point to tell me that w/o a professional (Pediatrician, Neuro, etc) making some diagnosis, it can be difficult to get SSI for our babies down the road. I put that comment off for some time; until I remembered when we were involved with a child going to residential and in applying for tuition grants and SSI (for the residential site's payment)........we were asked about EARLY dx and some comments about 'Why wasn't this dx given when the child was very young?" Remembering that--- got me to thinking. And so I asked others about this. They told me to pursue in trying to get a formal dx when we could. This is one of the reasons we went ahead to see the Neuro and while we don't have further testing results in yet, I think we'll be glad we went ahead and did this. Sincerely, Linny

VERY VERY VERY good point! Most states are on tighter budgets now too, so without a dx, many children are being denied services. We had our annual review with EI and they said that she was not delayed enough to continue services. I faxed the report from the neurologist and all of the sudden, she qualified again.:rolleyes: I was told, very matter of factly, by the school district at my DD's transition meeting (She will be 3 in Dec and age out of EI) that if she didn't have the CP dx, she would have to go through the testing process and would probably not qualify for early childhood through the school district even though she has 4 hours a week of therapies with early intervention. At least in my area, the prematurity and drug exposure mean very little after the age of 2. All that to say that it is good to get whatever dx you can so that the sevices are available if you feel your child needs them.

This is great information to know! We're waiting on a referral to the Neuro. It depends on what they determine for her as to when she will be seen. But we have plenty of time to get a dx if she indeed does have something. Thanks guys for all the wonderful info! I love this board!