FW: FW: Langenskiöld Patellar Realignment

[Guest guest]

Hi-

I passed your message on to a friend of mine whose son w/Ds has

had a lot of problems with his hips (not the same as your child, I know,,but

she had mentioned that her son was seeing an excellent doc at Children’s

Boston, so I asked if she thought that her son’s doc would be able to

help you.

(if you want her phone number, let me know and I will send it to

you privately…I deleted it from her message for privacy reasons)

Here is the link for her son’s Caring Bridge site, where

she talks about the doc: May 23 entry

http://www.caringbridge.org/ny/gabrieldavid

KathyR

From: ston

Sent: Wednesday, June 11, 2008 12:35 AM

To: kathy_r@...

Subject: RE: FW: [DownSyndromeInfoExchange] Langenskiöld Patellar

Realignment

I would immediately, before surgery, have Dr. Millis at Children's Boston

take a look at this child's recent x-rays and reports and let him know that

they need his opinion ASAP. The guy is the best in his field. It would cost

this mom nothing, but some phone calls to rush the records over to him. Surgery

should never be done without 3 or 4 opinions from the top centers.

Millis has been studying DS bone structures and has made some very

new discoveries using the best CT scans that are going to have a huge impact on

DS kids who have orthopedic problems.I would be happy to talk to this mom

anytime. Gie her my email and phone(snip).

Better yet, Have her call Dr. Millis for an opinion:

B. Millis, MD

Children's Hospital Boston

Associate Professor

Clinical Orthopedic Surgery

Director

Adolescent and Young Adult Hip Unit

From: " Kathy Ratkiewicz "

To: " ' ston' "

Subject: FW: [DownSyndromeInfoExchange] Langenskiöld Patellar Realignment

Date: Tue, 10 Jun 2008 18:18:21 -0400

Hi Debbie-

Is this something that the docs at Boston Children’s can

help with? I know that you said that the doc there had studied the pelvis/hips

of kids w/Ds, but would he know about this as well?

thanks

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of rdistinsmom

Sent: Tuesday, June 10, 2008 5:55 PM

To: DownSyndromeInfoExchange

Subject: [DownSyndromeInfoExchange] Langenskiöld Patellar Realignment

I was just wondering if anyone had ever dealt

with this. My son

Ronnie is 4 still doesn't walk or crawl. He has been to CT Childrens

Hospital and been seen by Physiatrist three times always the same he

was reluctant to bear weight on knees can not get to crawl told

everything was normal for Down syndrome typical low tone loose knees

give it time. The last time I went he told me I didn't need to keep

returning for follow ups (they where my idea anyway) unless his pcp

sent him. He didn't think braces would do any good at this point,

because they would probably keep Ronnie from trying to move around.

In the mean time, we worked with OT and PT from birth to three and

then the school trying to motivate, exercise and make Ronnie crawl.

Everyone kept questioning me on if I had taken him to CCMC. Unhappy

with the results and worrying I took him to Orthopedics at CCMC on

July 6, 2007. Because physiatrist and Orthopedics are connected she

had his records and did a through check up, sent Ronnie for x-rays of

his hips and legs and concluded the same. Everything is structurally

sound, low tone; no need for braces, walking bear foot might help.

Still Ronnie's therapists at school, the ones he had at birth to

three and over the summer and I all see something wrong. His left

leg bows out from the hip to the knee, the knee turns out then the

lower leg bends inward. He rarely puts any weight on his left leg

and if he does it is only for a second. He only stands if he can

lien on something and keeps the lower part of his left leg bent up

and backwards. For awhile we could force him to crawl and I could

force him or trick him into doing exercises, but the last few months

he has become more and more resistant. I am afraid his muscles are

shrinking into this deformed state and he will never walk at this

rate. The school doesn't think it is a matter of waiting or being

slow because of the downs, because they have seen him get worse and

if he could move one leg why not the other. You also can not get him

to keep his legs, while sitting, straight in front of him. The

school's PT has offered to talk to anyone who wants to help Ronnie

and I can sign a release if need be. He gets around by sitting on

his hips and shuffling his bottom back and forth. He has gotten very

quick at it.

So on April 14, 2008 I took Ronnie to his pcp and he said he would

refer us to Shriners if I felt that strongly. On June 4th, 2008

Ronnie went to Shriners and was examined by there doctors. He had

ultra sounds and xrays. He was video taped, photographed, and has an

appointment with ot and pt and was seen by o & p. Dr. Mac seemed to

really know his stuff. He said that

he has Langenskiöld Patellar Realignment (which I can't find much

information about on the internet) They explained it to me as a

severe and rarely seen at this age dislocation of the patella and on

top of that the Down syndrome already causes an increased tissue

laxity. Without an operation, they said he will never walk.

Sometimes people can compensate, but Ronnie's is too severe. It may

be causing pain, but he has such a high tolerance, we don't think he

feels it.

He is going to be operated on July 14th at Shriner's and we will be

there for three days. He will have a cast for about six weeks. The

doctor there seemed surprised that no one had diagnosis this before.

Ronnie was in Early Connection, Birth to three programs. We

contacted them while I was still pregnant and he started getting

services at six weeks old. He had OT three times a month, PT twice a

month, Speech three times a month and a teacher twice a month. Each

one of them saw and thought Ronnie had a problem with his legs.

Ronnie now gets these services through the school. All his teachers,

aides, OT, and PT have all noticed a problem as well. It definitely

seems more then a low tone, down syndrome thing. His PT has offered

to speak to any doctor that is willing to help Ronnie.

He was behind in most of his milestones. He didn't turn over until

he was 9 months . He sat up and 13 months old, May 24, 2005. At 40

months we where able to force him to crawl, but at 4 years old we can

no longer get him to do this. We have tried many remedies like thera

wrap, pony walkers, exercises, but his problem seems much worse and

he resists or refuses now to even allow anyone to try.

Sorry this is so long, but my question is has anyone else had

experience with Langenskiöld Patellar Realignment and the surgery.

We absolutely are going to do it, even with the risks without it he

has no hope of walking. But I was hoping someone else here had

experience. Also I was thinking that our information, might help

anyone who is having similar problems. Thank you for reading this

long entry.

Mother to Ronnie (4yrs old DS) (5) and (18)