We think that we have Michala cleaned out now. We were aggressive with treating her & all seems well now. Thanks to everyone for all the help & advice! Mike asked if you could get too much fiber. My answer was no. However Abe's GI specialist today said yes. Of course my husband is usually right. URG!!! She said rule of thumb is age plus 5. Michala should be getting 17 grams. She may be getting a little more than that but not much. She also said make sure she is getting plenty of fluids which she does. We will take Michala to the GI when Abe has his follow-up.
One thing we have run into lately is that Michala holds her bladder. When she had the ultrasound it was so full. When she does go her big diapers will not even hold it. She soaks everything. I know this has been addressed on the Aicardi listserv but looking back I could not find any info. Any advice would be greatly appreciated!
We did find out that her carnitor is low. That could have contributed to her recent impaction. It's never been before that we know of & she has never taken carnitor before. We will start that soon so hopefully that will help.
The Mayo Clinic found out that Abe's tryptophan issues was due to his vigabtrin. We had already made plans to start weaning him before we found out about that. We started weaning him yesterday. Please pray we are able to get him off it successfully. My fear was that the vigabatrin may be taking care of some of his seizures. He still has seizures all the time on 4 seizure meds & 3 rescue meds. It's our hope that getting him off some of those will allow us to see more glimpses of him. We started weaning him yesterday. So far so good. The past two times we have tried to wean him the first increase threw him into such bad seizure we had to go right to the ER because we could not get them stopped at home.
His GI appt today went great. She had put him on a diet last time because with his suspected mito disease a lower weight is better for him. He had gained 2 pounds but she was ok with this. We don't have to go back for 6 months unless he needs a bigger gtube.
Thanks so much for your continued prayers & support!