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Day +314 (5/4) Some new issues.. perhaps new challenges

We have been dealing with some issues lately that I thought were GVHD (Graft Versus Host Disease). Thankfully they were not. They are, however, apparently signs of an allergic reaction to the Bactrim (sulfa drug) she needs to take. Now we have to start a new medication, with a twist. The following is a copy of a letter from UMMC-F to her PCP whom we are to see on Thursday 5-6-10.

April 30, 2010


Dr. Timothy DeBiasse,

Fallyn’s dad, Frank, was in touch with one of our peds BMT attendings, Dr. Jakub Tolar, in Dr. John Wagner’s absence. He very much agrees that the rash/’zits’-like manifestations within hours of her Bactrim dose is likely a Bactrim allergy. Fallyn’s Bactrim should be discontinued. Instead for Pneumocystis prophylaxis in these remaining months until she is 1 year post transplant, she should receive Pentamidine 300 mg by aerosol inhalation once every 4 weeks. This is usually given in a clinic or day-hospital setting with the pharmacy for the clinic or day-hospital providing the drug after an order from the provider. In some settings, a nurse or CMA may prepare and set up the drug for administration, in other settings a respiratory therapist may be the person who sets up the drug for administration. (People who are pregnant should not set up, administer or enter the room during the inhalation period-about 20 minutes).

It is also recommended that patients receive Albuterol 1-2 puffs prior to the aerosol Pentamidine. Dr. Tolar felt that there would be no increased risk factors for side effects of the aerosolized Pentamidine for Fallyn because of her diagnosis of EB than for other patients without EB.

The good news is the short duration of the need for this approach at present. The long term implications may prove to be more of a challenge. I will keep you updated on our progress.

Thanks for all of your continued interest and support.

Frank & Fallyn