Surgical question.

iVillage Member
Registered: 03-16-2004
Surgical question.
6
Thu, 03-18-2004 - 10:10am
Hi there.

My name is Tracy, and I'm the single parent to 3 wonderful(most of the time) children. I have a few issuse with my kids. My oldest DD is 12, followed by my dx'd SID/PDD-Nos 4 yr old DS, and at the back of the pack is my 18 month old angel.

I guess I'm writing here, because there really isn't another board that this seems to belong in.

My question is for my 18 month old DD. No one has given me the exact medical terms, so bare with me. My DD has problems with her forearms and hands. The hands are due to be fixed this year. No really a big deal. Her arms are my problem.

My DD has what they call radial deviation. Causing her wrists to turn. We have tried OT corrective therapy and splints. However, the problem results from one bone in her forearm being shorter than the other, pulling her hand in. If you'll pardon the comparison, she carries her hands like a child with muscular prbolems that has cerebral palsey. Awful comparison, I know. There is just no other way to describe it.

Her ortho says that they can't be fixed until she's about 12. My question is this. The Shriner's want us to go to spokane. We live in Alberta. The idea appeals to me but I'm Waging the battle of...if I take her and nothing can be done and her Ortho finds out, they won't touch her. I want to go, but is it worth the risk? We have no Ortho ped specialist where we live. So my options are limited. But, is it fair to her to be using therapies that really aren't working.

I'm so confused as to what to do. Any insight? Any what I'd do senarios(sp?)?

Any input would be wonderful.


Tracy

iVillage Member
Registered: 03-19-2003
Thu, 03-18-2004 - 10:51am

Hi Tracy and welcome...I'm glad you've dropped in and hope you'll find the support you're seeking.


I have a few questions:
Did your ortho tell you why he wanted to wait until she's 12 to do the surgery?
How long has your dd been in OT?

 


 



iVillage Member
Registered: 03-16-2004
Fri, 03-19-2004 - 12:07am
Hi Jan.

Thank you for the welcome. I appreciate your trying to help me make sense of this.

My daughter has been in OT since 3months of age and will be working with her OT for years to come. Right now, my DD has services provided by a 'home based development' worker, who works with my DD's OT. They are trying to get her to use her hands properly. Even with the problems she has, she still uses the(the left being worse than the right), she has modified the way she does things so that it works for her. I haven't fought it because I don't know how long she'll have to fight the battle.

Her Ortho specialist did not specify why he had to wait. Just mentioned something about bone maturity and density. To fix her arms, they have to surgically break the bones and lengthen, probably with the use of pins. My concern is that as she grows the bones won't maintain their current ratio and they would have to intervene anyway. To fully understand, you ever had the chance to see a child who is missing their hand. Well, my daughter crawled like a child missing a limb(crawling using the backside of her hand and wrist).

My concern about sending her to spokane is not financial, or insurance related. It has to do with what happens if I take her. There would be no expense to me, but if it became known to her Doctors at Alberta Childrens' Hospital, they wouldn't touch her. Which causes the problem if the Shriners can't help her either. We would be left scrambling looking for an ortho who would treat her. It should go against ethics and oaths to refuse her treatment, but I know people it has happened to.

It may seem trivial but if left with nothing, then what?

Talk to you soon. Thank you for trying to help.

Tracy

iVillage Member
Registered: 03-19-2003
Fri, 03-19-2004 - 6:06am

Tracy, it's sad when what we consider to be the best option for our children often leaves us with nothing...I do hope you'll be able to find the answer to your dilemma soon and the outcome will be the best for your dd.

 


 



iVillage Member
Registered: 03-16-2004
Fri, 03-19-2004 - 1:05pm
Hi Jan.

I have a feeling that because we would be going outside of Canada for services we would be SOL finding a physician to work with us.

It is sad when the benefits to my DD get wrapped up in the politics of making money. You'd think they'd support all options for her. And if spokane was the answer you would think they could work together. However, here in Alberta they tend to take offense when you second guess them. At least it seems that way.

I thank you for your interest in trying to help me. Hopefully my DD will come out on the winning end of things.

Wishing you the best.

Tracy

iVillage Member
Registered: 03-26-2003
Mon, 03-22-2004 - 12:50pm
Unless I'm missing the boat it sounds like you are looking for a second opinion. I would be very curious as to why the first ortho doesn't want you to do that. My daughter, 15 muscular dystrophy, just had, and is still in rehab going on 4 weeks, ortho surgery on her feet and our dr. strongly suggested that we get 2nd and 3rd opinions. I had already had one before and our neurologist and physiatrist both recommended this surgeon so we were comfortable with him. I would get the second opinion and if necessary find another ortho. Denise
iVillage Member
Registered: 03-16-2004
Mon, 03-22-2004 - 8:42pm
Hi Denise.

You are right. We come from a small city in Alberta, where we don't even have a ped ortho specialist. The drs here all believed it was positional. that as she grew and used the arms and hands, things would correct themselves. So i guess in a way I did get a second opinion.

It took the ortho at childrens hospital 2 seconds to see the problem. everyone else that looked at her xrays didn't see a thing. I guess I'm not very impressed with the way things have gone in the past. I've had to fight evry step of the way. If I had listened to drs in the beginning, my DD still would not be eating or talking.

Spokane offers an alternative. A risky one, but it deserves my serious consideration.

I appreciate your sharing with me and for the advice.

Thank you for taking the time.

Tracy