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AND I feel MUCH better about where we are headed. I am much more assertive on the phone and was able to express how much I was dissatisfied and the reasons behind my dissatisfaction. He understands my concerns (and still knows less about SDS than I do...ugh...) He is going to call Cinci children's today and ask if they would like to see him before the genetics test comes back or if they want to wait until the genetics test comes back to see him. Cinci wanted to see him 2 months ago when it was a possible diagnosis...now that we have so many more factors confirmed they are going to want to wait? I don't think so. Anyway. I am assuming it will take a few days to hear back as they will likely want to look over the GI's records before saying what to do and where to go next but after he finds out what Cinci wants to do, he will call me back to update me on everything. I am feeling so much better and so much less distracted all the time now that I KNOW we are headed in a better direction. He is also going to ask if failing to gain weight is a symptom that occurs with isolated SDS because what we have found in the research is that height will be slow but weight is supposed to keep up with height after enzymes are started. That will be an interesting part of this. Danny is still not gaining weight... I am hoping that even just having a consult with Cinci will help us out.
I am so glad you got to talk to him and things are turning around. Hopefully now you'll get some answers. It's SO much nicer and easier when everyone is on the same page. Sorry Danny isn't gaining though
The naturopath appointment went well. His hair test came back in the "suspicious" category for heavy metal toxicity. The heavy metals don't always show up in the hair but the damage they cause can. Certain vitamins that should be there aren't, some that shouldn't be there are, etc. We are going to do a trial of Chelation therapy to see if he reacts in a way that indicates heavy metals being pulled from his system. If he reacts (but not badly) we will start Chelation therapy in the summer and it will last for 1-2 years. I am trying to avoid it because it is a therapy that he has to take "medicine" every 4 hours, round the clock, for 3 days, then a four day break, then the cycle starts over again. Can you say mental drain???