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Though we go to cincinnati now, we got the original recommendation to start at 3.5 from docs/researchers at Childrens National Medical Center in DC 5 yrs ago. After we started Dylan, we went to Kevin Flanigan for are for the the next two years (Salt lake city, UTAH) and he certainly didnt object, seemed to think it was a good/reasonable choice, though we had already made it. I dont think there have been any real studies reporting on starting so early, which is why the recommendation is 5. They dont have data arguing against earlier, I think they just dont have data on any earlier. Perheps there will be some retrospective data by the time your son is 3. At the time we stared , it was based on dr anecdotal evidence/opinion . There were not that many starting early then. I dont think anyone really knows about the long term consequences of starting at 3 vs 5. We started Dylan on prednisone and then switched to deflazacort a couple years later. The prednisone came in a liquid form that we gave him. Generic tasted awful but for a little more money one could get flavored stuff my son liked and willingly drank. He learned to take pills at 5 ish and we switched him to pred pills and then deflaz pills. Dont know if there is a liquid deflaz formulation.
What I did not anticipate is the major dental problems he is having due to the stunted growth, so I will put that out there. His jaw/mouth is way to small for his age and his teeth don't all fit, so we are looking at lots of intervention and $$ with that, but he was genetically challenged in the mouth anyways with us as parentsimmediately.div>
I have never heard of this particular issue with steroids, so I appreciate you mentioning that. Other parents, has this been an issue for your sons? I have a tiny mouth and still wear retainers at night (!!), so my kiddos have one strike against them, teeth-wise.
While my husband and I have agreed we will start Max on steroids when he is older, we want to be fully aware of all the side effects we might have to deal with.
Jennifer Shumsky said:What I did not anticipate is the major dental problems he is having due to the stunted growth, so I will put that out there. His jaw/mouth is way to small for his age and his teeth don't all fit, so we are looking at lots of intervention and $$ with that, but he was genetically challenged in the mouth anyways with us as parentsimmediately.div>
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