JMF Family Fun Day 2010 with the Atlanta Braves

Dying for Help Trailer

Final week of Entocort

After Macey being on the Entocort for close to two years now it is hard to believe she is almost completely off.  She is in her last week of 3 mg and then the true test begins.  She has band camp the last week of June and the first week of August.  That will be stressful and her appetite will be low because of the heat.  ALso she has dental surgery that week in August under general anesthesia.  The preop visit to get lung clearance will also include a lab draw for 40 cc's of blood for more specialized testing that the NIH wants.  The cytokine (inflammation markers) testing came back abnormally high so they want to redraw it to confirm the results. This testing indicates that Macey does have an IBD but they are unsure which.  Because her immune deficiency complicates her pathology for true IBD confirmation they have resorted to lab testing that shows documented evidence of a disease process.  I'm getting the jist that in the end all of this will be written up because it is a unique way of determining her IBD. Also in late August or early September we will return to the NIH in Maryland to have another colonoscopy. This will be her first one in 2 years off steroids.  If she has any weight loss or is symptomatic any sooner we will go ahead and go up and have the scope.  She seems to be doing well coming off the Entocort except for some extra tummy pain and bathroom trips that were around the week of her cycle.  But that always seems to be a bad week for her even on drugs.  We've also started taking her down on her Hyoscamine dose (Levbid).  She now only takes it once a day instead of twice.  Hopefully the dental surgery and anesthesia won't mess with any of this and things will go well.  School starts back here August 9th and she will be a Sophmore with two advanced classes (AP World History and Accelerated Math II).  Her language classes are over because she finished her second year of Spanish due to being in an advanced year of that. This year she is registered for Beginning Movement (Dance) and Beginning Drama.  

NIH report

Final report from NIH shows Increases in specialized bloodwork for IBD. The doctor there wants more bloodwork (drawn in Atlanta and shipped thankfully). Also we are weaning the Entocort and once off if she is symptomatic she will have a colonoscopy again to look at the same markers in tissue biopsies.

Doc visit

Knee was incised and dtained this morning. Cleaned, dressed and wrapped. Septra for 10 days and heat packs. Lots of yellow goop when drained.

Steroid wean / Skin Infection

Macey's steroid wean is going well. Down to 6 mg of Entocort. Hoping to come off completely.  No weight loss and no pain so far.  There is an infection where she got a carpet burn on her right knee last week.  She will go to the pediatrician tomorrow for a look but it is already much bigger than yesterday and very red and warm.  I started putting antibiotics on it yesterday but no luck so far.

Dental surgery in August

Way back when, Macey had the unfortunate episode of cracking a tooth and since then it has been a source of aggravation for her.  We watched it and finally her immunologist in Atlanta referred her to a pediatric dentist at Scottish Rite.  This was sometime in December or January. At the time Macey was having alot of symptoms and problems with her stomach and was being evaluated for inflammatory bowel disease.  With the workup complete and harsher drugs not being needed we have decided it is time to take care of the tooth.  The tooth will need to be extracted and a bridge will need to be made.  Dr. Thomas, the pediatric dentist will do the surgery on August 3.  This will give us time to try a protocol to clear her MRSA and also wean down her steroids some so she will not have as many possible complications from infection.  She will have immunology clinic on July 28 to be checked and then on July 29 she will have her pre-op appointment for the surgery.

Tomorrow we hope to hear from the GI here locally to know if we can start the steroid wean.  Macey's immunologist is out of the country so when she returns we can start the protocol for the MRSA colonization.