Acupuncture- more

[Wendy Beltrami]

Hi All,

Just wanted to check in and let you know what we've been trying...

Grant (age 15 1/2) was dx with AA in 12/98. ATG, etc. stable until 11/05 when following mycophenolate treatment he became transfusion dependent on plts and rbcs. Second ATG in Jan 2006 didn't help. Started twice weekly acupuncture at the end of Sept 2006. No real improvement, but tx interval stayed steady. Rbcs every 3-4 weeks and plts 2-3 weeks. In December he changed to once per week with acupuncture. Transfusions became more frequent. Added Danazol in Feb but it didn't appear to do much except raise his retic count a little. Transfusion intervals getting more closer together. Increase Danazol and start Zenapax. plt interval continues to shorten. Stop danazol .He had his first zenapax treatment on 3/24. Also got prbcs and plts that day. 4 days later on 3/28 needed plts again. April 4th, started daily acupuncture. 2 days later on 4/6 second zenapax and more platelets and rbcs.
No plt transfusion since 4/6- that is 18 days, the longest we've seen since mid February. Plts aren't increasing but they are staying steady and he is not having any bleeding symptoms.
Since he has had 3 zenapax treatments now, it could be the zenapax but somehow I feel that it is the acupuncture that is keeping him stable. If the zenapax was working, it should be increasing his counts and we're not seeing that yet but to have the plt tx interval go from 4 days to 9 days and now to 18 days and still going is encouraging.
RBC interval increased from 12 to 13 to 14 so that is really not significant in my mind.

I would like to reiterate that the Zenapax treatment is completely without side effects. So, if you are considering it, let me reassure you, it was a cinch. It remains to be seen whether it has any benefit.

The acupuncture seems odd to many I'm sure. Putting needles into someone with a critical platelet count seems wrong. Sometimes he will have a teeny red dot at the site of a needle, but most often, nothing. It is virtually painless and he rarely can feel the needle going in at all. Moxibustion is also used around the needles (a lit cigar-like stick of compacted herbs that directs heat around the needles) I think the one used is made from artemesia.

Wendy/mom to Grant

[Robi1Knobi]

Hi Wendy,

I have moderate AA with Terc mutation, and am going to try accuncture for tomorrow. I have used it in the past. Did your son take any Chinese herbs? I have some that an accupunturist friend bought me, but I'm hesistant to put anything that might be toxic into my body...Dr. Neal Young from NIH is putting me on Danazol next month, that's why I read your post. Thanks, Linda