Thursday, July 28, 2005

Look Papa, New Tools!

I bought David his first set of plastic tools and a tool bench. He went right to work!

Some people have asked where we got his soft helmet. It was fitted for him but I'm sure the company can refer you to a place closer to you.

Cirs Prosthetics & Orthotics
3260 Ash StPalo Alto, CA 94306 (650) 462-0102

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David McNally - Wiskott Aldrich Syndrome, Bone Marrow Transplant, and Graft-vs-Host Disease

My son had a mild common mutation of Wiskott Aldrich Syndrome (WAS). We decided, after 2 years of research, to not do the BMT but one month after our decision, he had a brain hemorrhage from jumping on a trampoline. His hemorrhage was treated with platelets but we were quickly encouraged to do the BMT. When he was two yrs old, he had a BMT with a 10/10 unrelated adult donor. We hope our research will help other families struggling with WAS. Feel free to email me: aimeemcnally@gmail.com

WAS Clinical Scores

Jin et al (2004) employ a numerical grading of severity:

0.5: intermittent thrombopenia
1.0: thrombopenia and small platelets
2.0: thrombopenia and normally responsive eczema or occasional upper respiratory tract infections
2.5: thrombopenia and therapy-responsive but severe eczema or airway infections requiring antibiotics
3.0: both eczema and airway infections requiring antibiotics
4.0: eczema contiuously requiring therapy and/or severe/life-thtreatening infections
5.0: autoimmune disease or malignancy in an XLT/WAS patient

David's Symptoms During and After Transplant

Ate and breastfed through transplant
Bad Skin Graft vs. Host Disease
Cataracts from chronic steroid use
Differnt donor blood type = numerous transfusions
Donor blood type took over so no more transfusions
Hashimoto's Thyroiditis
High hemoglobin or called polycythemia
Intestinal problems due to steroids = antacid
Low blood counts = transfusions
Low Magnesium and Potassium = liquid calcium supplement
Low self-esteem and emotional sensitivities
Needs to drink lots of water
No dry eyes, or GVH in gut or liver
No mouth sores
No TPN
Papillidema - optic nerve swelling
Severe Spinal Headaches from Lumbar Punctures
Stunt of growth because of steroids
Very high blood pressure because of medications

Thursday, July 28, 2005

Look Papa, New Tools!

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David McNally - Wiskott Aldrich Syndrome, Bone Marrow Transplant, and Graft-vs-Host Disease

Coping with WAS

Organizations

Followers

Medical Journal Articles

Blood Tests

Medical Help

BMT and GVHD

Databases

Definitions

Disclaimer

Books and Publications

WAS Families at carepages.com

WAS Families at caringbridge.com

WAS Families at Other Places

David"s Mutation

WAS Clinical Scores

David's Symptoms During and After Transplant