Connections » Dr. Wint: Finger, Hand and Wrist

Related conditions?

(5 posts)
  • Started 3 years ago by heavencent70
  • Latest reply from Dr. Wint

Total votes:

  1. heavencent70
    Member

    Hi there. I am new here, but often post on other related limb difference web sites. My daughter Kaelyn is 1 and has symbractyldactyl on her left hand (thumb, three nubbins and a small pinky).

    My question is that I often see hand/limb differences are a symptom of some other syndrome, and that heart-related issues are often another symptom of the same syndrome.

    We have never gotten an official diagnosis. Kaelyn's original doctor thought it was ABS; but I discovered on my own that if it were she wouldn't have nubbins. I found symbractyldactyl on a Web site.

    So my question is … do I have kaelyn's heart tested in case it would happen to be one of these syndromes? I forget the names of the two I saw today, but one was like something Holt?

    Do I trust that it's just failure to form and that she doesn't have anything else wrong with her?

    What are your experiences?

    Thanks!

    Posted 3 years ago #

  2. KarenO
    Member

    My daughter (7) also has symbrachydactyly. She was originally misdiagnosed with ABS as well but a plastic surgeon told us symb. We saw quite a few surgeons and even a geneticist, but other issues were never discussed. If you want to be more certain, I would recommend seeing a hand surgeon. I found them to be much more familiar with her condition than orthopedic or plastic surgeons. My daughter's hand sounds similar to your daughter's (thumb, 3 nubbins, and partial pinky). Her pinky had one bone in it and her thumb was fully formed. A surgeon may or may not recommend/suggest something but you could of course take or leave their opinion. We opted for surgery, but I know many doctors don't recommend the free toe phalangel transfer. It hasn't given her longer fingers (or fingers at all) but it has stabilized her pinky and allowed her greater movement of her hand and palm. She had good movement before, but we believe that it is greater because of the surgery, and she's had no adverse effects with her toes or feet.

    If she has symb. there aren't any other related conditions such as with Holt-Orm syndrome. Just her fingers/hand is affected and nothing else.

    Karen

    Posted 3 years ago #

  3. Momosmom
    Member

    Hi, where you need to go is genetics. All syndromes are diagnosed through that department. Frankly, this is important for your child because it will tell them whether or not they carry a gene or a deletion that can be passed down to their children, as in Holt Oram.

    Does your child see a surgeon/specialist? They can give you a referral to a genetics department -- we go to our nearest children's hospital.

    Linda Q

    Posted 3 years ago #

  4. jencurley22
    Member

    When my son was born with fibular hemimelia the hospital he was born at automatically did a heart test. Cant remember which one but it ruled out heart issues and then we saw a geneticist after that. Since in his case they do not know which exact genes cause fh they coutldnt really do much. We had his chromosomes checked and they were fine but even the geneticist said that was not necessary. A lot of the genetic syndromes have tell tale signs that many docs can pick up. I would ask if the hospital did a test while you were there or talk to your pediatrician about your concerns.

    Hope this helps : )

    Posted 3 years ago #

  5. Dr. Wint
    Moderator

    Your childs pediatrician should always evaluate the heart and kidneys especially with a hand differnence. How that evealuaiton is done depends upon thier exam findings and other issues.

    However for the genetics consult I agree. Speak with a gentecist. There are many cases that are called symbrachydactyly that may have a more definitive name and others that defy categorizing.
    There is often a spectrum of conditions and differences that overlap. A genetecist will take all the information together and see if it falls into a broader or more definitive grouping and amy be able to answer questions about familial patterns.

    Last, a hand surgeon may be worthwhile for a consult to discuss what is feasible or what to expect for your childs hand. IN addition many specialized childrens and or orthopedic hospitals have an excellant OT department that can be invaluable for assistive devices and tips and tricks for writing, typing . hygeine etc if the fingers seem to need that help.

    Finally I see a lot of kids who just figure it out. But it doesnt hurt to speak to someone for more information

    Posted 3 years ago #

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