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I've been thinking about this for a few days. I remember someone else posting about this several weeks ago...I remember resonding that I thought labeling a child would help to provide more resources for the child.
But....my child is still an infant. My child is not quite a year old and delayed about 4-5 months. Yes, she's coming along...but the symptoms seem to continually point to CP. Birthmother admitted use of alcohol before she found out she was pregnant---whenever THAT was, who knows. But, while all testing for other problems has come out negative on all accounts for other problems (chromosonally, CT, MRI scans, etc...) The "CP" is still apparent.
Our baby has hypotonia...which is what's suspected the cause of moderate to severe reflux, (Meds still aren't helping much at all.) as well as some mild difficulty in taking solid foods (could still just be the developmental age, KWIM?).
The Birth-Three nurse suggested we might want to get a formal dx for our baby to---open up more resources if we needed to. Already she's covered medically....in EI services, etc.......we have no want for needing $$ to help her at this point.
BUT, I'm thinking, IF down the road.....suppose she doesn't progress as much as some are hoping she does. Should we just wait and see...OR, should we go ahead and ask for the formal dx of CP so that----IF we should have to go the route of SSI or whatever else in the future......it would be documented?
Or, should we just 'wait and see' and if need be, we'll tackle that then?
Suggestions? Thanks ahead of time...
Sincerely,
Linny
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We have had the same debate. Regarding CP and Sensory issues and have decided to go ahead and get the dx in writing. We basically decided that it can't hurt. When she gets to school age, they can't put her in spec ed unless we consent. So, we see no neg aspect to getting the dx.
Telling everyone that she has the dx is a different story. It will be a need to know basis because I cant stand when people treat a child differently because of a dx. I don't want people expecting less from her or thinking that she isn't capable of doing things when I know she is. Same with the drug exposure. So when people ask:
"Why was she born so early?" I say: "Oh I guess she decided it was time to join the world." THEY DON'T NEED TO KNOW! My daughters history is hers to tell when she is ready and she can decide who to tell it to. That's why I use no identifying info on this forum.
A little more than you ask, I know! You just got me thinking. Good luck with your little one. My DD was WAY behind for a long time too. She is now catching up all at once!
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My thoughts is..get a DX as early as possible. The EI nurse is correct, about opening up more resources. And it will make it easier later on to qualify for things. I've never been one to try to hide my kids disabilities. They are who they are, and it's easy to see that they are disabled. I can't make them appear as if they are not. L is the only one that is even close to being normal. Their stories? I do tell people why they are the way they are, to bring about awareness. But the personal parts..I leave out..except for friends.
I'll play devils advocate and be on the opposite end....I have great concerns that we as a society are overlabeling children based on what are really "guidelines" of development. I understand that children with medical needs must be treated, but I think we're too quick to jump at perceived developmental delays. We're at the point we expect all kids to either be on "target" or else having some syndrome. Some kids are just plain not the brightest bulbs on the string---and that should be ok. Some of the greatest innovators in history were just plain ordinary. Its like labels make it ok to be "behind" because then its something we, or rather "they" can fix. But sometime we don't need to fix because only our expectations are the problem (and our developmental milestones).
There could be a lot of different and hotly defended opinions on this one, so I'll just give you mine. dd#2 was born exposed to crack and "light drinking". She has ADHD and SI. Those dx work. I haven't done the FAS clinic. We can if we want, but in this instance the diagnosis does me no good. Her current dx fit like a glove, treatment works. There is no valid point in adding to the alphabet soup KWIM? Her shrink has argued it with me - my response is "how would you treat her differently?" No response, he wouldn't treat her differently, so he finially dropped it. If the ADHD and SI weren't there but we had issues, yes.
So long story short (I know, that train passed), I'm in favoring of dx'ing if you need help and support, but until than, what's the point in another label? Generally there's no time limit so you can wait until you think you need it.
Linny,
Just curious if you decided to get a formal dx for your baby girl?
We went today to the neurologist and I am very glad I did. She confirmed what the OT and PT have been saying all along which gives me a whole lot of confidence in them as therapists. She also said that the CP was more severe than I had thought. She has considerable hypertonia on her right side and is weak on the left side. This could cause a curvature of her spine over time if not treated.
All this to say that our friends and family kind of poke fun at all her therapies and say things like "oh she's fine." She does not appear to have anything "wrong" with her so they think we are just being paranoid. Well, a well known and respected Tulane neurologist who specializes in CP just verified my concerns. So, now I will make sure that we doing her stretching excersizes EVERY day and continue OT and PT even if other people tell me it's not worth my time!!!
She also refered her to a clinic that works with drug exposed infants. Didn't know there was such a thing!
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I think with something that is serious enough to need medical treatment and treatment can really change depending on what the dx is, then you should find out.Labels aren't just to be able to name something, they help in treatment and that is the bottom line. If my parents hadn't bothered getting a dx for me at my young age when they noticed me not hearing as well, then I would have lost years of service and development. That would have really impacted me and have been harmful.Some dx's I do believe we are too quick to jump into but something like CP? No, I'd want to know ASAP so I could best help my child and it's an actual medical condition that really needs the right services.
Thanks for your responses and concerns! I truly appreciate them! We have had her in EI since we came back home. I've asked for more PT times, and they were granted. (Two, rather than one time per week.) We're in the process of having her Dx'd with the CP. All of the therapists are leaning this direction---which is fine with me. She is making great strides, but it's clear she's around 5-6months delayed---but again, making great strides! :)
Presently, I'm also trying to hurry the process' to have her 'leg braces' ordered. Everyone around here says it takes considerable time to receive them after the measuring and ordering. We'll see.
Anyone have a lot of experience with those? I know what they'll look like, how they'll fit (extra shoe sizing), but any other tips would help!
Sincerely,
Linny
CP is actually not as scary as I initially thought. In the majority of cases, it is not progressive. I guess for some reason I pictured my child getting worse and worse and ending up in a wheelchair. I think that is most peoples' impression.
I should clarify that the reason I put off getting a dx was because no one would really come out and say Cerebral Palsy. They beat around the bush about it and said things like "hypertonia" but what the heck does that mean to a mom if she has no experience with CP?!?!
I thought it might be a waste of time to take off work and drive an hour to the dr for her to tell us that we should do PT. We already do PT AND OT and Speech. But, I did feel much better after I saw the neurologist and she does want us to follow up with her 2 times a year to make sure therapies are on track and being effective.
The biggest plus for getting the Dx is that it will qualify her for PT after she turns three and enters the public school system arena. Because her CP is mild, she may have been denied services without a neurologist saying that she needs them.
Linny
Anyone have a lot of experience with those? I know what they'll look like, how they'll fit (extra shoe sizing), but any other tips would help!
Sincerely,
Linny
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All of my kids wear braces of one type or another. I've found that bending their knee when putting them on makes it easier. Be sure to make sure that you get the heel all the way down into the brace. Watch for red spots..if they don't go away in like 15 minutes, they need adjusting. There are numerous sites that sell shoes that fit over braces. I normally just get regular KSwiss, they have a bigger toebox, and work great.
Lylac, too funny! I buy Kswiss for that same reason. Once you have the braces, it doesn't really matter what shoes you put over them because the braces do the work. When V was a baby the challenge was that the shoes needed to cover the braces weighed more than she did (she was 20 pounds until 4 years old). We used sandals most of the time. Don't buy the shoes until you have them.
Its not good for them to wear them all the time or they can get ultra sensative to normal bare feet stuff. Ask both your PT AND your OT how often she should wear them.
Don't leave them in the car. Assuming they are like V's, they melt what I would consider only mildly warm temps.
V's first few sets (that were only for positioning and supported standing) were actually made by her PT right on the spot. That seemed to work better than the perfect kind you have to order and wait for.