Tuesday, April 01, 2008

Tuesday at NIH

David's labs looked pretty good. His cholesterol is still really high which they say is from the immunosuppressants, this is nothing new, it's been high since after transplant.

We saw Dr. Cohen, a dermatologist. He is fantastic. He and his colleagues agreed that we need to keep up the topical steroids (hydrocortisone) because that will prevent him from any increase systemic steroids. He also mentioned a couple of instances from other patients who had skin irritation from Zenopax (immunosupp.). David receives this drug twice monthly by IV. Also, there are some people he knows who take Septra (prophylactic) and are very sensitive to light, which causes an eczema like reaction. This was very interesting information.

He had pictures taken, then we saw a nutritionist. We're going to see if his antacid can be taken at a different time of the day so it does not interfere with his nutrition absorption. From what we understand, the steroids cause an over-production of stomach acids. The extra acid can cause stomach lining problems. The antacid helps decrease the extra acid. However, the antacid DOES prevent the absorption of calcium and iron. If we can time the antacid just right, perhaps we can avoid the nutrition issues I'm worried about. We do not need another bad cycle, like many medications cause.

The nutritionist says he is not on the standard growth chart for his height (88cm or 35 in) and is in the 10 percentile for his weight (30lbs or 13.8 kg). However, those two numbers put together put him in the upper 90 percentile for BMI (body mass index). This is good news but not accurate since he is on steroids.

We had a brief meeting with the WAS doctor, Dr. Sucolic. He said we made the right decision about David's BMT. He said David is doing well, overall. He agreed that topical steroids should be used regularly so to prevent the use of Rapamune or more oral steroids.

David and I took a taxi downtown D.C. to see the cherry blossoms. They were really beautiful. This was the first time I had seen the monuments and the White House!

1 comment:

Anonymous said...

Dear Aimee,
I came across a natural prescription for High Cholesterol. This was in a natural healing magazine, by Dr. Mark Stengler. I had just sent the information to my brother, Steve, in Santa Cruz, CA. Then I read your BLOG, about David's cholesterol. You would have to contact a naturalist doctor in your area, to find out if David could take the product, and the amount to take, for his age.
The prescription, is Red Yeast Rice. The adult dosage is 1,200 mg. twice daily. The extract has been shown to reduce cholesterol levels and increase HDL. The type of product used in sucessful studies contained 10 to 13.5 mg of monacolins per day. Note: take 100 mg of CoQ10 daily when using this product.

I sure hope there could be a solution with this for David, taking into account a smaller dosage for his weight and age.

Still praying for you all.

Love, Ellie