Thank you! To be honest he’s on so many seizure meds (4) I’m not sure which does what. He has Tonic seizures that only happen during sleep right now and they are very short in in duration. He also has a VNS implant that I feel helps him as well.
I used to care for a lot of people with PEG tubes. We were not allowed to crush meds everything had to be made up by the pharmacy into liquids and we didn't alter the make up of the medication
We always gave the feed during the day time and the patients were more upright to stop the feeds from causing aspiration pneumonia. Does your son sleep sat upright during the night ?
Nothing is wrong with your son...so why would you dare to even put him on a diet?! He needs all the calories he can get.and it's not safe for him,idk if you trying to keep him small,so you can pick him up.and it would be easier,but he needs to grow.and get big,he not gone stay that same size for ever,kids do grow up...feed him,and get him off that diet.
I think I will let his GI doctor make that call. He is able to breathe and move so much better so I’m guessing at his next appointment he will go back on a regular feeding routine.
In a previous comment, his mom, or whoever typed the comments, said that he was having trouble moving and breathing with the weight he was at, so his parents are making the best decision for Jonathan
He has a genetic disorder called BPAN. It is very rare. It normally shows up in girls. It’s an X chromosome and since girls have 2, their symptoms are less. Most of the little boys miscarry. Jonathan’s a miracle. He also has Cerebral Palsy, HIA, and a seizure disorder called Lennox Gastaut.
He was gaining too much weight. He was getting to where it was difficult for him to move and breathe. He was at 99th percentile for weight. He’s now in the 80th.
