Re: Needing advice on Markells not staying on

August 3, 2005

Lori,

Gosh, you're in a predicament.

I'm afraid my best advice would be to get to a skilled Ponseti method

doctor as soon as you can, but I gather that's not an easy thing to

work out..

I think it's likely that Elijah's foot is not fully corrected or has

relapsed. That's why he's not staying in the shoes. (Having had a two

week break is a red flag re his treatment.) Either way, if that's the

case, what needs to happen is to go back to casting, to get him back

on track. My concern is that he is already 16 months, and 2.5 more

months just makes correction that much harder.

Wearing sneakers or the brace shoes alone won't accomplish anything.

Wearing the full brace .. if the foot is uncorrected or has

relapsed .. isn't worthwhile either. I don't know that it could do

him any 'harm' wearing it and having his foot keep slipping, but it

will just be miserable for him, and you, and won't keep the foot from

relapsing more. Shoes alone without the bar don't hold the foot in

the position needed to prevent relapse.

If I were you I would want to get him back to a corrected state right

away, before your move.. if at all possible. And also before much

more time goes by. I understand that you are dealing with the spcial

situation of military medical care .. (I was an Air Force kid my

whole life) .. but it doesn't seem right for a patient who needs a

specialist to be denied it just because his doctor has retired. I

dont' know how it works, but is there any way you can make an appeal,

to your husband's commmander, Family Services, or something like

that.. or ask for permission to get elsewhere? Maybe there's no way

and this sounds farfetched .. but is there any way you could go on

ahead to Hawaii, or your husband have his PCS date made earlier, so

you could take him to doctor you are expecting to use there? (he's on

the Ponseti list right?)

I know you said Iowa was out of the question, so I'm not going to

push that.. but I will say that that's what I would love to see you

be able to do.. to get there, to put him in the hands of those who

know best how to deal with older children, and atypical cases, who've

relapsed, and get him set up with a new brace and ready to head off

to Hawaii, totally on track.

I know that might not be possible.. I send you best wishes, and hope

you are able to get this resolved!

Hang in there,

and Claire

> Hi All~~

>

> I know most of you will say to contact Dr P and I think I will, but

> I would really like to hear some feedback from other parents.

>

> Elijah is 16 months old and has been treated from day one by a

> military Dr at Keesler AFB, Biloxi. He started casting at 10 days

> old and had his first tenotomy at 7 wks. He slipped out of that

cast

> so it was reapplied. His right foot wouldnt stay in his shoes.

>

> At the time, my husband was deployed to Iraq so the Dr gave Elijah

a

> break from everything for 2 wks until he came home. We started

then

> with another casting method that would stretch his plantar tendon

> and allow his foot to stay in the cast after his second tenotomy.

> He had the second one at almost 4 months old and after the 3 wk

> cast, he was able to stay in his shoes.

>

> Today, we're on our 3rd pr of shoes and no matter what we do, his

> right foot will NOT stay in the shoe. Heres the problem: Our air

> force doctor has retired. They didnt replace her with another

> pediatric orthopedist and theres no one qualified in the area to

> treat him. We're about to move to Hawaii in October and he'll be

> seeing Dr Burkhalter at Tripler Army Medical Center but until then,

> he's without care.

>

> I have a pair of high top, soft sole sneakers that I can keep him

in

> and his feet stay straight and flat in them. Ive tried letting him

> keep those on during the day and go w/out at night.. but I dont

want

> him to get out of the habit of having shoes at night.

>

> Ive tried leaving him in the sneakers at night and he screams until

> theyre off.

>

> For the past week, Ive continued to put him in the Markell's but in

> the morning, he's out of them on the right side. I dont want to

risk

> him damaging his foot pulling it out of the boot every night.

>

> As I see it, these are my options:

>

> 1. Keep using the boots until we get to Hawaii, 2.5 more months,

> not knowing if he's damaging his foot by pulling it out w/out

> untying or unstrapping.

>

> 2. Use the high top sneakers at night instead.

>

> 3. Take the Markell boots OFF the bar and use them at night since

> he's using the leverage on the bar to get the shoes off.

>

> Im quite sure that we'll be going into 's once we see Dr

> Burkhalter. But until then..... what do you suggest? Flying to

> Iowa is out of the question at this time.

>

> Lori

>

> Mom to 4

> Elijah 16 mo atypical RCF DBB at night (if we're lucky)

August 3, 2005

Lori,

I think it's possible Elijah's foot isn't fully corrected. That could be

why his foot is constantly slipping out. Not a fully corrected foot isn't

always the reason for the foot slipping out of the shoe, there can be many

reasons, but after reading his treatment thus far, I am assuming that. Of

course, I am no doctor and just giving my opinion. I question the

credentials of his original doctor. There should NEVER be a break in

treatment that early on. Any surmounted break, especially more than a

day, will result in regression for sure. Please explain what you mean by

a different kind of casting. There is only one correct way of casting

with the Ponseti method. Also, if your son has atypical as you mentioned,

that type of foot is more difficult to treat and requires a more skilled

Ponseti trained doctor.

I know you said you would probably email doctor Ponseti. I would

definitely email him with many photos of Elijah's foot from standing,

front, side, back, etc. If in fact the foot is not corrected and

atypical, you may want to consider a more qualified doctor. Also, the

doctor you plan to visit in Hawaii is not on Ponsetis list either. Is it

possible to go to Dr. Durkin in Honolulu? In addition, because Elijah is

16 months, his foot may even be more difficult to treat at this point

(because its atypical). You may want to try to go to Iowa even though you

said it wasn't an option. Why not? I'm just curious.

I think Dr. P can guide you and give the best advice (as you expected).

Good luck and let us know what you decide.

PS. I think the DBB is doing no good if his foot keeps coming out. I

would continue to try to keep them on as best you can until further

treatment is obtained. Maybe try to reduce the angle to 60% instead of

70%. His foot may stay in better at that angle. Just a try!!

HTH,

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

fax

August 3, 2005

Lori, that's the exact thing that made me chose to pull Gabe out of Tricare

Prime. I'm sorry I should have written immediately about the high tops. As

and Claire said. Wearing anything but the shoes w/ bar is pointless. I

seriously doubt it will do any " damage " if he keeps pulling out of the shoes.

Also, while an afternoon, at his age, probably won't hurt anything if left ourt

of his brace, a day or more is a definite no-no. I do to Keeler and absolutely

demand that they send you to someone else. They can appove it. They can also

send you and yours on a permissive TDY to do it. If your hubby has a govt travel

card, he can put all expence on that and you can fill out travel vouchers when

you return. I wouldn't take no for an answer!

and Claire wrote: Lori,