It's really a guessing game on why Jude is throwing up so much. We have slowed his feeds down, adjusted volumes, and rates. We considered he is teething, considered the phloem, and the fact he doesn't swallow and cough like we do. It seems his seizures have also taken on a new look to me. Mike said they look the same to him, but Jude is doing more of the "cymbal" seizure. He throws his hands up and shakes, but this is only when he is startled. With the exception of the startle seizures I don't see much activity anymore. We know Jude has so many different focal points on where his start, so it's hard to isolate the exact cause, but it sure seems like loud noises cause them to me. I have also had several people on here suggest that we test Jude for Mitochondrial disease. I have heard they have issues with vomiting on a consistent basis. Any thoughts on this for parents that understand?
Here is Jude in his new compression vest. He loved it. It helps break the phloem up in his chest so he can expel it easier.......it didn't seem to work. I loved his jiggly cheeks. Ignore my mommy voice, haha! I make for great entertainment sometimes with my high pitch voice.
So.......it's a Monday.........all you can do it laugh!!!
2 comments:
I do think mito testing might be worth looking into in Jude's case (but if you do, follow them closely and make sure they run the right tests the first go around). You also might want to try some anti-nausea meds (like Zofran). The only thing that has ever helped Reagan's nausea was the nortriptyline we started her on a month or two ago. Her nausea and vomiting has decreased exponentially! There's also Periactin...it's in the same family as nortriptyline, but didn't do much for Reagan. I SO know how you and Mike feel!!! Sometimes the throwing up can be even more stressful than the seizures!!! Hang in there!!!
We just had the muscle and skin biopsies done on Finnian. They also did another lumbar puncture and they are also checking for amino acid issues. We won't have all the results back until the end of March first week of April. You know Finnian suffers for virtigo when he has ear infection or a build up of fluid in his ears and he throws up like crazy. We tried Zofran on Finny but it made him throw up even more. We tried Reglan to help gastric emptying but it increased his seizures and his dystonia but it has worked well on other kids. Hang in there I know there is nothing worse than watching your child basically heave up their insides while having a throwing up session.
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