STILL 16lb 4oz, Sean can't seem to gain any weight:(
just heard from the nurse at the doc's office his genetics test was normal, I'm excited because he doesn't have something screwed up with his DNA but scared and upset because now it will be even harder to figure out what is going on and treat since there is no label for what is going on I"m just so over it give me a healthy happy baby who doesn't choke and scream in pain and gains some weight and I will go on my merry way. SOMEONE has to be able to give me that.
so we saw another local GI today, this would be the fourth GI to look at Sean. He examined him for a couple minutes and talked with me about his history, dismissed his reactions to previous drugs he has been on and said that his plan was to put him on two different drugs and possibly have him start the drug in an allergist's office or his own.
Two problems with that Sean may not react day 1 of the new med chances are pretty good actually that he won't last time he had a reaction it built in severity over several days. Secondly can you guarantee me my child won't vagal or pass out? or loose even more weight from vomiting and diarrhea (typical reaction to new medication for sean). I have a sick stomach and I'm just dreading the new medication. Yes it may be the miracle medicine that makes everything all better and all our problems will go away but god what if he has a same or worse reaction then he ever has? I then somewhat sarcastically asked him what he thought about feeding Sean a small amount of formula every hour, not like we are getting a whole lot of sleep anyways at 2.5 oz at a time. He said that that was so far off normal he needs a reason for why we can only give sean 2.5 oz and he doesn't want to go even less at a time even if that made Sean symptom free because he didn't know why he had to do that and he wants to know why. But he will throw him on two new medications without knowing what is wrong. Sean needs to get in 25% more calories then he already is that means 30cal formula at the volume he is able to tolerate 24 oz/day, the acid needs to stop coming up out of his stomach. He isn't doing anything until he conference calls Sean's pediatrician and gets her take on things.
Basically I don't see anything good coming out of today, if he wants us to start those new meds I will be a nervous wreck. He said he would get back to me by tomorrow.