Friday, November 27, 2009

Shriner's Appointment early - Surgery planned

Shriners called us and had a cancellation so we got in early - this past Tuesday! We were so happy! We were really pleased with the surgeon and his knowledge and experience with Perthes. He feels Simon needs the femural osteotomy. We tried to hear everything the doctor told us, while Simon was bouncing loudy around the room (after we had been there for a few hours....) so we are still trying to remember everything and will continue to ask questions.

Between the Seattle Orthopedist and the Shriner's MD - (Dennis Roy) we have learned that Simon has a severe case of Perthes - especially for his age. He has lost some containment of the femural head. The ball or head has also become very enlarged and is about 3 times the size of ball on the normal hip. We could clearly see this on one slide of the MRI.

Dr. Roy confirmed that there is no one easy answer or solution with Perthes. Doctors all over the world are trying different strategies at different times to get the best outcomes for these kids. Nothing can cure or stop the process of Perthes. The intervention is just trying to fix the "fallout" so to speak. His decision to do the osteotomy is basically based on his long time experience with the disease against the best outcomes he has had. He feels that doing the surgery now will possibly prevent doing "salvage surgery" which is the worst case scenario with Perthes and what often happens with kids who aren't diagnosed until a later age. This is when the bone has already grown in (and not in a good way) and they try to make the best out of the situation - but often have poor outcomes.

By doing the osteotomy now, they hope to position the head into the socket and get the bone to grow back in the best shape possible. The surgery entails breaking the femur and angling the top part of the femur into the hip socket and putting a plate on the femur where they break it. In about 4-5 months, they remove the plate. He will have a spica cast most likely for 6 weeks post surgery (this is the cast that goes from toes to arm pits). When the cast comes off, he will go back into the hospital for a few days of Rehab and then have several weeks where he will need to rebuild his muscles to walk again.

After this is all said and done, the doctor said he usually lifts a lot of the restrictions on activity. Yeah, there is some hope on the horizon. One downside, is that in 4-5 years when the bone is all grown in and he begins to grow more, they will have to re-evaluate if the head is too entrenched into the hip socket which can happen and impede movement. If this happens, he will need to go through the reverse surgery (breaking of the femur to pull it back out some....). Hopefully this won't be the case.

So, we felt really good about our experience at Shriners. They were so nice and patient with Simon. He is also doing a few extra tests to confirm that he doesn't have any other type of dysplasia going on because of of few unusual aspects of his case (such as his small size .... he is only in the 7th percentile height for his age and a few other bone abnormalities). However, he feels pretty confident it is Perthes and so do we. But it is nice to put our minds to rest as we move forward with such a big surgery to make sure it is not really something else happening.

So we are on a wait list for surgery. It can easily be 3 months away - and that is expedited in the Shriner's system. They provide all of their services for free - so there can be a wait for things. But their experience is fantastic and we feel it is worth the wait. He will be on a "short call list" in case another child has to cancel their surgery - so we will plan to be ready after Jan 1st.

In the meantime we are going to try and keep Simon as healthy as possible so when his surgery date arrives he is ready! We are also doing research on alternatives to the Spica cast - such as a hip spica brace and plan to talk to the Care coordinator at Shriners about this next week. Simon has a bad reaction to the Petrie cast because of his eczema and we feel a brace would save us all a lot of agony.

Stay tuned!!

Friday, November 13, 2009

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...