I haven’t posted in a while because I have been afraid to jinx things but well here goes.
Nate is doing great. Since his last botox we had a lot of problems and pain and things got really bad. We ended up starting him on Flagyl, mineral oil and miralax. After a little while we took him off of the miralax because it just caused him really bad diarrhea. Since then things have gone great. He gets mineral oil in the morning and at night and has stopped having pain when he poops. He has even had a couple of occasions where he seems to feel that had needs to poop and has used the potty.
We also had testing done and he came back negative for celiacs,. His levels (iron, vitamins, etc.) are all great and his cromasonal screening came back clear. The only not so great result is that genetics was unable to find a cause for his HD in their testing but I guess that’s just how it is sometimes.
I am just so excited he is able to poop with out pain and we haven’t had to do an enema in a few weeks. Even his speech is improving and he is growing like crazy. We made it 3 whole days straight with out once hearing him complain about his stomache hurting.
The problems aren’t fixed but at least for the time being we get a break and he gets to be a healthy(-ish) and happy 2 year old.