Thursday, February 5, 2009

Now that I have had some time to process all of this, I can talk about it.

I sent an email to Dr. Dobbs this morning. It had Matthew's treatment history to date, some photos as well as my concerns. This is The letter I sent.

Dear Dr. Dobbs,

My name is Jo-Ann and I have a six year old son who was born with a left clubfoot and was diagnosed with drop foot at 15 months of age. He has been treated in Calgary, Alberta, Canada from birth but I am concerned with his regression and am looking for a second opinion for what treatment we should follow next.

The following is a run down of his treatment to date.

4 days old – started serial casting (below the knee)

3 months – Denis Browne Bar (DBB) but had many problems with it

4 months –preformed tenotomy, full leg serial casting then Denis Browne Bar (DBB) 23 hours a day

9 months (I think)- cut back hours on DBB

15 months – diagnosed with drop foot

He had a nerve conduction test as well as an MRI.

18 months – first non-articulating AFO

2.5 years – first in a series of articulating AFO's

4.5 years – botoxing with serial casting (below knee), back into an articulating AFO

5 years – post tibial tendon transfer with medial release, calcanial osteotomy and more botoxing. Casted for 6 weeks then into a new articulating AFO

6 years – new non-articulating AFO

Now at the age of 6, his heel cord is very tight again. He is no longer in neutral. He has some active dorsiflexion (but can not achieve neutral) and can sustain a hold, but the front of his foot is curving inward again as well as he is walking on the outside of his foot when not in his AFO. He sees a physical therapist every two weeks for stretching at my insistence and am currently trying to get more funding for more regular visits.

His current surgeon feels that within 6-12 months he will need to perform another tenotomy and doesn’t feel physical therapy is needed. I am concerned with the regression. I am concerned that it will only continue and am worried about multiple surgeries.

I have attached some photos of Matthew’s foot taken at one year post-op (Jan 22/09) as well as his latest AFO that was designed to try to reduce the ankle from pushing outwards.

I hope you will be able to give us some insight as to his care.

Thank you,

And this is what I got back in return

Dear Jo-Ann:

Thanks for contacting me and sharing your experience. I can understand how frustrated you must be. I do see a large number of children with clubfoot and associated muscle abnormalities and/or nerve problems.

There is no question that this type of clubfoot is difficult to manage. The key is finding out which muscles are working well and which aren’t which can help dictate proper decisions on future procedures.

I applaud you for insisting on physical therapy since this is crucial for long-term success in cases like you son’s.

It is hard to make specific recommendations without seeing your child. My general approach would be to start with serial casting to correct as much of the deformity as possible before deciding on surgery again.

I would also recommend different bracing. The brace he has is quite large. You can control his ankle with a much smaller brace which would have the advantage of allowing him to develop more muscle strength. Use of brace that large will only further weaken his leg which makes things worse in the long run.

I hope this helps. Let me know if I can be of further assistance.

Respectfully yours,

Matthew Dobbs, MD


I then asked if he could see Matthew and he said he would ask his nurse to set things up for us.

So, I am thrilled that we will be heading out at some point to see him. Unlike Matthew's current doctor, he has experience with this unique combination.

I am also worried. What will this entail? How hard will this be on Matthew? How hard will this be on the pocketbook? Who will help with funding? Should I sign Matthew up for T-Ball?

The questions are endless, but I suppose they always are with children. The only difference are the questions.

5 comments:

tara @ kidz said...

I think this is great! I know there are concerns and worries, but in my opinion it is always worth at least getting a 2nd opinion (or more!). I can't wait to hear how it goes!

Sue said...

You will NOT regret this move. I have to admit that when I was reading the list of things Matthew went through, my heart sank a little bit. It's so hard to be informed that you've been on the "wrong track," isn't it? We had that with Grace when she relapsed -- our doc was so lazy about the bracing so we had it OFF more than ON. We just didn't know. The below-knee casting, botoxing, clunky AFO's ... all red flags.

But you are going to be in SUCH good hands. I know it raises concerns and worries -- I felt the exact same way just a few short months ago! But once you take a deep breath, jump in, and starting going with it you will feel such great peace. Trust me on this one! It will be a struggle at first -- so many things to get used to, so many changes -- but once you see the improvement, your heart will soar.

Hang in there! The details will all fall into place. I know it's overwhelming now, but just take one little step at a time and before you know it you'll be through it. Best wishes!

MamaJenn said...

{hug}
You are a wonderful mom, who listened to her heart and instincts. You will find a way.

Me said...

Big hug...my goodness! Go with your gut...maybe it looks intimidating to do the casting again, but then in another year you may be thanking yourself for going through with it!

Anonymous said...

Hello!

My son was born with a left clubfoot. Trust me when I say that you will be SO GLAD that you are seeing Dr. Dobbs!! Both he and his staff are wonderful, and will give your son the best care that they possibly can. In my opinion, you could not have made a better decision than contacting him. Please feel free to contact me via e-mail if you would like to chat or if I can help out with any questions!
mommy2myblessings@yahoo.com