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Trina Ward
March 14th, 2004, 04:51 AM
My daughter Daria is 4 years old. She has MPS 1, and she has been through a cord blood transplant.

We have noticed that her fingers are really very contracted and clawed. Initially we found that she had problems in her upper neck that were pinching on the spinal cord (and contributing to the finger contractures). However she has had surgery to stabilise (ie fuse) her upper neck, yet her fingers continue to worsen. She cannot straighten any of her fingers, and her index fingers remain completely bent at all times. Obviously she has learnt to adapt her life around her limitations but.....

At an ortho doctors exam clinic (where we participated as a case study for their specialist exams), many of the examiners and students alike referred to Daria's hand deformities as "trigger fingers", "trigger digits", and indicated that relatively simple surigcal release of tendons would be an option. We have already had xrays that ruled out carpel tunnel as the cause of the clawing.

I know that this is a classic problem of many MPS disorders. I was hoping that other parents could share some of their experiences with hand deformities, treatments (surgical or not) and results. It is an issue that we have been battling with doctors about for almost 2 years. With school fast approaching we are hoping to try and find something/ anything to give her more normal usage of her hands.

Waiting for all your exciting replies......
Trina

Jessica
March 14th, 2004, 11:22 AM
Hmmmm... :?
Shouting reallllllly loud....Steve!!! Tami!!!! :D

3coolkidsmom
March 14th, 2004, 12:25 PM
All three of my kids have had bilateral carpal tunnel surgery and Spencer and Laynie had to have more extensive finger releases done. Poor Laynie, We were dealing with Maddie's shunt problems and by the time we noticed Laynie's hands, her thumbs were completely unusable because they were locked. Whooops! It just sorta snuck up on us!

Anyways, Laynie had tendon releases done(at age 6) and she did have some minor tendon "scraping" I believe is the term that was used, on her thumbs and her hands and fingers are great today. For Spencer and Maddie, we used a surgeon here in Ft. Worth, but Laynie's surgery was done in Minnesota at the U of M with Dr. Van Heese. She told us that children with MPS who have hand problems, such as carpal tunnel, need to be treated sooner rather than later. Many parents, like Me she meant!!!, wait too long until their child has lost some function and sometimes it can not
be regained.

You know, confessing on this forum is gonna out me! Everyone will soon know what a circus my life really is!!!! In case anyone is left out there who doesn't know!
:lol:

Amy Holland

Jessica
March 14th, 2004, 12:45 PM
You mean you are not the perfect parent??? :?

:cry: You've blown my mental image of you!!!

Just kidding Amy :D ...thanks for helping Trina.

MelI
March 14th, 2004, 06:46 PM
I'm so glad this question was just posted as we just got the results of Jake's NCS (Nerve Conduction Study) and it shows that he has mild carpal tunnel syndrome. He also has some of the curving in the upper part of his fingers (I think this is like the "trigger finger" you mention, Trina) and my understanding is that the normal surgery for carpal tunnel does not always fix this but that they have to do a bit more 'release' and 'scraping'. How pleasant!!! We are now in the process of trying to figure out what we need to do for Jake and have an ortho. consult here in Seattle (most of Jake's 'Hurler' doctors are in North Carolina!) May 28TH (the soonest they could get him in!!!) and will see his N.C. ortho. in August. I think we still have some options as far as night braces and single digit braces as his is still in the mild stage. Hope you get some answers to Daria's issues! :?

Take care, Melanie
http://www.caringbridge.org/wa/jacobirish

Sharon Cochenour
March 14th, 2004, 11:13 PM
My son Andrew has Hunters and has moderate carpel tunnel syndrome. He has not had surgery yet, because we wait and try to link as many things together as we can so he doesn't have anesthia to much. They offered to fit him for hand splints, but it is hard enough to get him to wear the foot splints.
Any way I do have a article called:

Surgical Treatment of Carpal Tunnel Syndrome and Trigger Digits in Children with MPS Disorders.

I got it from Dr. Van Heest at the University of Minnesota. If you are interested e-mail me your address or fax number and I will send you a copy.
Sharon[/code]

MelI
March 17th, 2004, 05:26 PM
Hi Sharon,

I sent you a private message (pm) with my contact info. as I am very interested in a copy of the article you mention. I'm not sure if I did it right so I thought I better post this to make sure you got the message. I sent it a few days ago.

Thanks!!! Melanie :)

Trina Ward
March 19th, 2004, 02:33 AM
Hello everybody

i have managed to locate the article discussing the surgery on carpel tunnel and trigger digits in MPS children via my university databases. I have a copy of the article I can now email to anybody who is interested. It is about 2MB in size though so it does take a loooonnnnng (long) time to download. But well worth it.

Thanks to this article Daria will be seeing an ortho hand specialist in about 5 weeks time!!!!

Just send me an email to daria99@bigpond.com.

Cheers
Trina

Sharon Cochenour
March 20th, 2004, 09:23 PM
Melaine
Yes I got your e-mail and mailed the article. Sorry I haven't been around the computer for a while.
Sharon

MelI
March 21st, 2004, 05:02 PM
No problem Sharon! Thank you and I'm looking forward to getting it in the mail! :D

Forands
March 30th, 2004, 09:47 PM
I don't know if this subject is too old, but Max's fingers were what led the doctors to look at MPS to begin with. When he was 2, his fingers started "locking up". We took Max to the hand surgeon at DuPont, and she determined he had 6 trigger fingers! Max's pediatrician (Dr. Mary Kay) thought this was very unusual and felt we should have genetics look at Max. So, since then, he had his left hand operated on. They released four triggers (the loop the tendon runs through), shaved down his thickened tendons, and did a carpel tunnel release. And I have to tell you, it has made a big difference. Even though he got really good at using his curved fingers, it's so much better now. His right hand was getting bad, but since ERT, it's improved a lot. So, I hope this helps!!