Anyone have ONLY hypotonia as a diagnosis?

[Wild Lupine]

If so, did your child eventually outgrow it? And if they needed PT/OT beyond 0-3, how did that work? Did your insurance company require an additional diagnosis or was a hypotonia diagnosis enough to for them to cover therapy?

[by-the-lake]

We initially had 'central hypotonia' as our diagnosis when we were getting PT and OT. However, we just have OT and ST, and newer diagnosis of Chairi I malformation and speech delay. Our neurologist has added 'hyperkinesia', and still won't commit to CP quite yet. fun, huh?

[APToddlerMama]

DS has hypotonia, among other issues.  DH also has hypotonia, and no other issues.  I believe that you do not outgrow it, but that it can improve with therapy, etc.  I would have never guessed DH had hypotonia, but our son's PT has pointed out some ways that DH "compensates" and "cheats" doing different tasks.  He excelled in sports and never had any other issues though.  I know our insurance will pay for private PT with a hypotonia diagnosis even without anything else. 

[sbgrace]

Our insurance won't cover therapy for any diagnosis except resulting for accident/injury or autism spectrum stuff.
So hypotonia wouldn't do it for our insurance but neither would cerebral palsy or down syndrome!

Do you have a copy of your policy? It might give you a good idea for whether therapies are covered at all for non-accident/stroke/etc. type conditions.

[sbgrace]

Oh, hypotonia can't be outgrown. It doesn't mean it's going to cause major issues in life though! I'm mildy hypotonic. I had no clue until my son was diagnosed and each new therapist kept mentioning it to me!

[Wild Lupine]

Originally Posted by by-the-lake 

We initially had 'central hypotonia' as our diagnosis when we were getting PT and OT. However, we just have OT and ST, and newer diagnosis of Chairi I malformation and speech delay. Our neurologist has added 'hyperkinesia', and still won't commit to CP quite yet. fun, huh?

We're in this fun, too. All we have is hypotonic with a swallowing disorder. I'm wondering about CP, too, there's a hypotonic form DS has all the symptoms of a mild case. A neurologist is one of the few kinds of specialists he hasn't seen yet.

Originally Posted by APToddlerMama 

DS has hypotonia, among other issues.  DH also has hypotonia, and no other issues.  I believe that you do not outgrow it, but that it can improve with therapy, etc.  I would have never guessed DH had hypotonia, but our son's PT has pointed out some ways that DH "compensates" and "cheats" doing different tasks.  He excelled in sports and never had any other issues though.  I know our insurance will pay for private PT with a hypotonia diagnosis even without anything else. 

DS's PT has talked about him 'outgrowing' hypotonia, but maybe she meant his symptoms. His OT has said he'll likely outgrow his swallowing disorder (probably caused by hypotonia), but again, maybe she meant the actually swallowing part, not the hypotonia itself.

Originally Posted by sbgrace 

Our insurance won't cover therapy for any diagnosis except resulting for accident/injury or autism spectrum stuff.
So hypotonia wouldn't do it for our insurance but neither would cerebral palsy or down syndrome!

Do you have a copy of your policy? It might give you a good idea for whether therapies are covered at all for non-accident/stroke/etc. type conditions.
 

I do have a copy.... somewhere... it's good insurance. We're trying to get him onto Medicaid, but are having a hard time with that, they're probably being stricter in who they allow because of the economy.

[Peony]

So far hypotonia is DS's only dx as well. Mild CP was thrown around by one doc, we shall see I guess. DS just missed qualifying for PT through EI but we do get a certain number of consults with an excellent PT. He does get weekly speech therapy since his hypotonia affects his speech, or lack of. He wears inserts in his shoes to assist in balance which has done wonders for his mobility. The PT was tickled about DS, said he remembered her exactly of her now grown son. She has telling me that because movement is more taxing on DS's body, it just requires more out of him to control things, he is going to get tired easily, she would encourage us to keep him in inserts, and to know that he could do most things, it just might not always be easy for him. It isn't outgrown, just the signs are harder to detect the older they get. 

[loraxc]

Just happened to be in the SN forum and saw this. Yes, my DS has hypotonia as his only dx. I'm not sure it's even on his charts anymore, though everyone was really concerned about him as a baby. He also had major nursing problems and was borderline failure to thrive. He was in PT from about 4-12 months, at which point he was discharged because he had improved a ton. He crawled at 11 months, walked at 13, and now looks almost completely normal, though he is still very floppy and hyperflexible. But he actually seems to be rather athletic--he has a great, accurate throwing arm-- at least compared to his sister, who has no formal hypotonia dx but certainly also seems to be low muscle tone.

I can't overemphasize, though, that they were extremely worried about him when he was a baby. We had a sedated MRI and he was tested for muscular dystrophy and all sorts of things. All came up negative. These days, everything about him seems great except that he does remain rather thin and gains weight slowly. He is probably 10th% weight and 90th% height. I don't know if this is because moving takes more energy or what. My DH is very slender (like, 5 ft 10, 130 pounds), so it may be genetic.