The Latest! To Shriners on Dec 22nd

Here is the latest update after our Nov 2nd appt. with Seattle Children's hospital. We actually did not go in person, as the lead Ortho MD Dr. Goldberg felt that additional test may be needed and didn't want us to drive the 3 hr trip just to need more tests and drive back. He actually wanted to do the tests when we got to Seattle, but because we have Kaiser insurance, we couldn't get it covered or approved, so we waited to see what he thought of the tests we've had so far.

Anyway, Dr. Goldberg and a team of ortho radiologist specialists reviewed all of Simon's tests since Jan 09 including 2 sets of xrays, the arthrogram, and the MRI from October '09.

The conclusion so far is this: Simon has a somewhat unusual course for Perthes for his age. He most likely DOES have Legg Calve Perthes, but he still wants some skeletal xrays to definately rule out a skeletal dysplasia. One support of this concern is that Simon falls in the 14th percentile for height for his age which has steadily gone downward as he gets older. This could be due to the steroid use for his asthma, but only the skeletal xrays will prove it.

He also states that Simon has a severe case of Perthes and recommends an osteotomy. Because of the distance to Seattle children's hospital which would require an extended stay away from home, Dr. Goldberg suggested we try Shriner's children's hospital which specializes in pediatric orthopedics and recommended Dr. Dennis Roy. They also happen to be right here in Portland only about 5 miles from our house! We were very grateful that Dr. Goldberg did an extensive write up of his findings, describing what he saw in each test which helped us understand the severity of the situation.

So we applied for Shriners hospital for care last week and just found out we were accepted! We feel so fortunate! The soonest appt. is Dec 22nd and we are on a will call list for a cancellation earlier than the 22nd. This is also fortunate since some kids have to wait 4 months for an appt. after being accepted to Shriners. Shriners hospital is well known for it's excellence in comprehensive care and compasion for children and they cover all expenses as well for their care.

In the meantime, we are trying to get Simon as healthy as possible. He started on a barage of liquid vitamins to include multivitams, extra calcium, digestive enzymes, OPC, and probiotics a few months ago and has not had his usual Fall list of illness like the last two years. We are also seeing a NAET provider who started him on homeopathic meds for his respiratory illness (Asthma) in hopes that we can wean Simon off his daily inhalers (which may be harming his Perthes progression) This will be a VERY slow process so he does not have an asthma attack and we expect it to be early Spring before he is hopefully off all inhalers.

He seems to be doing OK physically except that he falls down unexpectedly almost daily - but doesn't seem to hurt himself. His leg just buckles under him. He also almost falls much more frequently and you can see that he barely recovers his balance over and over again because of the loss of strength in that leg.

We are hoping for the best - at least the best care and follow up care we can find to get him the best he can be in spite of this illness. One day it will hopefully be behind us...