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just found out both of my girils have low muscle tone

sunshine1234sunshine1234 member
in Special Needs

hi. my almost 4 year old has low muscle tone and lax joints. We found out at 17 months when EI came out. Last week, I just found out my 9 month old has low muscle tone too,,,,They were both delayed in the physical milestones. We are looking into the 2 girls and me have a connective tissue.

We have an appointment at John Hopkins for my oldest at the Hypotoni Clinic....I just thought that the baby would not have low tone too...

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Re: just found out both of my girils have low muscle tone

  • Florak8Florak8

    You are going to the best possible place. Dr. Cohn is awesome from what I hear. Glad you got in now because he is leaving to work at a hospital in Canada this summer.

    A lot of hypotonia tends to be genetically passed down, and it can be part of  a CTD. Dr. Cohn will look into all the other possible symptoms for you to help you pin down the exact cause and any other issues to watch for. 

    My DS has hypotonia but is seems to be more brain based. We do not have a DX yet. 

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  • sunshine1234sunshine1234 member

    Flora-where do you live? Do you have any other kids? I know he is leaving :(

    Why havent you seen him yet? I am on the hypotina board on yahoo..Are u?

     

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  • Florak8Florak8

    Yes, I am on that one, too. :)

    I live in the midwest, so it is a little out of reach. I am mulling over trying to get in before he goes, though . . . .

    DS is our only child. We have done a lot of testing genetically, MRI, EEG, lumbar puncture. We have a few results we are waiting on, but we did have one doc tell us he thought it was PVL, and I am starting to tentatively think he may be right. 

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  • sunshine1234sunshine1234 member
    flora i figured u might be on that board......what is the name of that snydrome?
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  • sunshine1234sunshine1234 member
    what is your name on that board?
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  • Florak8Florak8
    I sent you a PM. :)
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  • haleybeth81haleybeth81
    Both of my girls have hypotonia as well and my youngest was DX at 6 mo.  DD#1 is much worse than DD#2 but both of them have made great progress with aquatherapy and ground therapy.  My girls have the muscle and joint only type so there really aren't a lot of genetic tests for us but I did go to the hypotonia clinic and Dr Cohn is great.  He gave me a lot of information that I had never heard before and the staff at John Hopkins was wonderful.  I would call know to set up an appt though because it took several months for us to get in.  Also can you guys send me the info about the yahoo hypotonia group please.  Thank you.
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  • WYEngTeacherWYEngTeacher member
    I'm really interested to hear that Hopkins has a hypotonia clinic. My DD has hypotonia and we go down there to Kennedy Krieger - they are the ones who diagnosed her - and yet they have never referred us to that clinic. I wonder why??
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  • haleybeth81haleybeth81
    WY no one told me about it or referred me.  I was just looking up hypotonia resources in the area and stumbled across it.  I don't think they really advertise themselves (the clinic) so not many people know about them.
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  • WYEngTeacherWYEngTeacher member
    I guess I should have clarified, Kennedy Krieger Institute is a PART of Johns Hopkins. DD goes to a developmental pedi there. They've referred us to several other clinics at Hopkins for various tests/evals, so I am surprised we wouldn't be referred to the hypotonia clinic when they were actually diagnosing DD with Hypotonia. 
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  • haleybeth81haleybeth81

    imageWYEngTeacher:
    I guess I should have clarified, Kennedy Krieger Institute is a PART of Johns Hopkins. DD goes to a developmental pedi there. They've referred us to several other clinics at Hopkins for various tests/evals, so I am surprised we wouldn't be referred to the hypotonia clinic when they were actually diagnosing DD with Hypotonia. 

    yeah that is a bit strange but I will say the reception staff didn't even know what I was talking about when we had our appt. They actually had to look him up in the computer to see where we had to go so maybe it's not widely known. 

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