Thursday, September 10, 2009

Today I spoke with Dr. Candotti at the NIH. He was only able to go off the info that I gave him and he still wants some more info but his opinion was that it is a tough decision on whether Kyler should or should not have a BMT at this point. He would feel better about giving his opinion after we have a few immune tests ran (which I plan on trying to have done this week). Me and Coty would really like to go see him personally but Kyler DEFINATELY doesnt need to be on a plane with everything going around and it would be too long of a trip by vehicle and Kyky has started hating his car seat to the point where when Coty him and I go somewhere together I usually end up in the backseat with him. So, we more than likely will not be able to go see Dr. Candotti but I am going to have the test ran that he would like and give him the info. His opinion is that in ways Kyler sounds like XLT as far as platelet levels go BUT he said these new bumps (which I talked about in my last post) sound like they could POSSIBLY be a skin related virus which could mean that his immune system is being affected and that he is more on the WAS side rather than the XLT side. So, as previously mentioned his opinion is now going to be based off of which mutation Kyler has (when I find out) and what the immune tests reveal. So at this point we are still opting for the BMT. No donors found yet, and after reading a couple of things I would really rather not use a cord. I am going to do everything in my power to avoid that. I know SOO many of you have offered to be tested to see if you are a match and I am so grateful for that!! If we cant find a donor I may ask what we would need to do for those of you who would liked to be tested before we even consider the cord blood. Who knows of you could be our own personal angel :-D
Other than that the only thing is Kyler is going through his SECOND round of this stomach virus. I feel so sorry for him but other than crying really hard today for about 5 minutes while he was cramping up he has been a happy baby. He loved on me afterwards like I was the one who had been hurting. I know every mom thinks this but he is the sweetest most perfect baby and he ALWAYS knows how to make me smile...and he's only 5 months old (well he will be on the 15th).We have an appointment monday so ill update then! Thank you to all of you for praying and keeping updated on Kyler..please continue to do so! We love You!


  1. Are the bumps whitish/pimply-looking surrounded by red? Ask the docs if they may be molluscum. If they are, do NOT tear them or otherwise potentially break them and see a derm. about irradicating them COMPLETELY ASAP. You can see my comments on the IDF WAS forum under "WAS & Skin".

    Hope they aren't. Harmless virus but particularly annoying for WAS'ers.

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  3. Hi Jill,

    Glad that you had a chance to talk with Dr. Candotti and get his opinion on Kyler. Good luck on the testing and on the donor search. I hope all goes well with that and I hope that the stomach bug is a short lived one and Kyler is back on track soon! he sure sounds like an awesome kid.

    Take care.


  4. Sorry, that would be 'eradicate', and the IDF forum listing is 'WAS & Skin', not 'Skin & WAS'; it's near the bottom of the WAS topics. My brain stepped out for a bit.

    I didn't want to turn this into a molluscum forum, but for the sake of ensuring accurate information, I must report that for WAS patients, molluscum IS serious even if it is 'harmless' (=non-life-threatening).

    This is because, with those of us with compromised T-cells (we all hope Kyler's are fine), we don't have immunity to the virus, and if we have any such immunity at all it is seriously hampered. (I speak from extensive, very frustrating personal doesn't appreciate just HOW frustrating until one deals with hundreds of them, even to having them on the edge of one's eyelids).


    Added to that is the vicious circle involving the eczema: the broken itchy skin of the eczema makes for perfect conditions for the molluscum to be spread even more (simple scratching can do it), and those treatments that help treat the irritation of the eczema (skin moisturizers, etc) make better conditions for the molluscum too.

    IF it is molluscum and IF Kyler's immune system is compromised in fighting it (I truly hope & pray not on both counts), my experience suggests that an all-out full-front war of papule removal (all at once...this is vital) and individual site cauterization (also vital) is the best avenue for beating it.

    Talk to the docs; molluscum can be tested for directly with a sample. Feel free to contact me directly if you have further questions about my own experience with it; if I can spare ANYONE the years of discomfort I endured as we tried this and that possible treatment, then the suffering was worth it since we seem to have found a way to win the battle.

    Hope it's not!