Post by Alaska on May 28, 2009 11:26:46 GMT -5
Well, the last couple of months have been quite challenging for my little man. His teacher, who is very high-strung herself, has been sending notes home with increasing frequency about Caleb not doing his work and having meltdowns, etc. We had been continuing to work on all the things that we were doing with the developmental psychologist and OT, but we just were not seeing great results. We took him back to the psychologist and she convinced us to try an SSRI. So we took him to a new group of doctors, the "blue team" here at my school, and had him evaluated again in every direction. We got the script for prozac, we increased his caloric intake even more since he was only 36 pounds and 43 inches tall at 7.5yo, and got referrals for OT with a group that specializes with sensory processing disorders.
The prozac did help with his anxiety, however, after about 4 weeks we saw a dramatic increase in self-stimming and constant motion. He could not sit still for 5 seconds. He was in the nurses office every day at school for getting hurt doing something wild and crazy at recess. This is the kid who would freak out if you picked him up too fast. He has always hated swinging and climbing on things because he was so afraid. For the last couple of weeks he was climbing trees and jumping out! It was nuts!!! He also started getting in real trouble at school. He completely lost it one day yelling and screaming and the school called us. I went straight to his doctor and told her what was going on. We stopped the prozac that night. He has not had it in two weeks and we are seeing a slow improvement in his symptoms. It will be a long time before anyone convinces me to try something like that again for him.
So we also had our consult with a new GI doctor yesterday. They are thinking he may have Hirschprungs disease so we are going to do a barium enema first. Depending on what that shows we may or may not do a biopsy. I asked the doctor if it's not HD then what is next on the differential and he said he really doesn't know. I hope it is not as serious as HD, but I do hope for an answer so we can maybe get my poor boy some relief.
We also met with another dietician/nutritionist (I know there's a difference and I am not sure which is which or which she was). Anyway, we talked again about all the calories we are pouring into this little guy and how his growth is still just not much. I told her how every time I am in an endocrinology lecture they talk about growth hormone and Caleb meets the criteria for it and even the FDA approved uses for it. I then will talk to the doctors about Caleb except I don't tell them he is my son and they all say that the patient I am describing needs to be on growth hormone. But then when I tell them it is my son they all back off. I do not understand that. So this nutrionist told me that at this institution (not my school) what she sees is that the endo dr's don't usually start a child on growth hormone if both their weight and their height are equally below the growth curve. His height has to be proportionally lower than his weight. So, the only way that they might try it with him is if we can get his weight up. So that is our next goal. (of course, we have been trying to get his weight up for 7 years!!)
It's not that I am really look forward to having him on growth hormone. It is a daily injection and I cannot imagine doing that with him right now. But I don't want him to turn around at 20yo and not even 5 feet tall and ask why we didn't at least try everything. Our main concern is that he is healthy, of course, but we also hate to see him be sooo small. Unfortunately we are already seeing it affect him socially. Not only do kids give him a hard time about being so so small, but adults do not think he is as old as he is and they have a tendency to baby him. It makes him feel weird.
So, that's where we are with him. I have to tell you the changes we saw in his behavior on the medicine really scared us. It was like he was a completely different child. I sincerely hope that it was just the medicine and not anything else going on or developing.
Thanks for reading.
The prozac did help with his anxiety, however, after about 4 weeks we saw a dramatic increase in self-stimming and constant motion. He could not sit still for 5 seconds. He was in the nurses office every day at school for getting hurt doing something wild and crazy at recess. This is the kid who would freak out if you picked him up too fast. He has always hated swinging and climbing on things because he was so afraid. For the last couple of weeks he was climbing trees and jumping out! It was nuts!!! He also started getting in real trouble at school. He completely lost it one day yelling and screaming and the school called us. I went straight to his doctor and told her what was going on. We stopped the prozac that night. He has not had it in two weeks and we are seeing a slow improvement in his symptoms. It will be a long time before anyone convinces me to try something like that again for him.
So we also had our consult with a new GI doctor yesterday. They are thinking he may have Hirschprungs disease so we are going to do a barium enema first. Depending on what that shows we may or may not do a biopsy. I asked the doctor if it's not HD then what is next on the differential and he said he really doesn't know. I hope it is not as serious as HD, but I do hope for an answer so we can maybe get my poor boy some relief.
We also met with another dietician/nutritionist (I know there's a difference and I am not sure which is which or which she was). Anyway, we talked again about all the calories we are pouring into this little guy and how his growth is still just not much. I told her how every time I am in an endocrinology lecture they talk about growth hormone and Caleb meets the criteria for it and even the FDA approved uses for it. I then will talk to the doctors about Caleb except I don't tell them he is my son and they all say that the patient I am describing needs to be on growth hormone. But then when I tell them it is my son they all back off. I do not understand that. So this nutrionist told me that at this institution (not my school) what she sees is that the endo dr's don't usually start a child on growth hormone if both their weight and their height are equally below the growth curve. His height has to be proportionally lower than his weight. So, the only way that they might try it with him is if we can get his weight up. So that is our next goal. (of course, we have been trying to get his weight up for 7 years!!)
It's not that I am really look forward to having him on growth hormone. It is a daily injection and I cannot imagine doing that with him right now. But I don't want him to turn around at 20yo and not even 5 feet tall and ask why we didn't at least try everything. Our main concern is that he is healthy, of course, but we also hate to see him be sooo small. Unfortunately we are already seeing it affect him socially. Not only do kids give him a hard time about being so so small, but adults do not think he is as old as he is and they have a tendency to baby him. It makes him feel weird.
So, that's where we are with him. I have to tell you the changes we saw in his behavior on the medicine really scared us. It was like he was a completely different child. I sincerely hope that it was just the medicine and not anything else going on or developing.
Thanks for reading.
