Ben has been having trouble tolerating his feeds when he wakes for the day. It has been a struggle on and off (more on than off) for the past three weeks. He starts gagging, has tons of secretions, starts sweating and vomits a few times. After the episode, he is lethargic for a few hours and then springs right back to his old self. I have tried everything I can think of to help and am often asking myself "What is going on?". We can't have him vomiting like this every morning for many reasons. First, he can't afford to lose the weight. Second, his nasal passages are open for the first time ever after too many surgeries. When Ben vomits it comes out his nose and ears too and I'm so worried the vomit is going to cause scaring in his nasal passages and close them off again. Thirdly, Ben's cochlear implant was implanted differently than a usual implant and is exposed in his ear. Because of this, we have to be very careful about any ear infections in fear it will infect the implant that leads right to his brain. And last but not least, it is just heartbreaking to watch him struggle every morning and feel so awful. Nobody should have to go through that.
It just so happens that two other little CHARGE kiddos we know are admitted in the hospital for the same feeding issues right now - just more severe than Ben's episodes because theirs continue all day and ours subside after the morning (although yesterday he had trouble in the afternoon too, but I'm hoping that was a one time thing). And they haven't found anything to help or gotten any answers either.
I've been trying to manage it at home and with a few phone suggestions from Ben's doctors, but am now at the point that it isn't improving (actually yesterday after following some suggestions from the GI Nurse Practitioner Ben started doing worse). I have no choice but to start scheduling Ben for the visits with his docs and have him endure the tests that I'm sure they are going to want to run. I'm dreading it because Ben is terrified of the hospital (can't say I blame him). Last time this happened, Ben ended up spending two weeks admitted and a dozen tests run and nothing provided any answers. There is nothing worse than putting your child through all that to not find out anything.
If anyone has any input or suggestions, please let me know. I'm starting to wonder if over a certain period of time, a child can develop an allergy/sensitivity to their food. Has anyone experienced that or checked into that?
4 comments:
I'm so sorry to hear about that. Do you think they are abdominal migraines? Josh used to cry and get very upset during his feeds(it would be cyclical). Initially he would throw up, and then the nissen helped, but he would continue to cry during and sometimes after feeds...something maybe to look into. I hope he stays out of the hospital, but also gets questions answered. We're thinking of and praying for you guys!
I too thought about abdominal migraines/cyclical vomiting, Amy. The sweating and pale skin and lethargy afterwards especially made me think about this. Katie used to have this when she was younger, although her episodes would only last one day. But I do know of other CHARGErs who have it, and their cycles run several days at a time. Talk to Kristi Swann about this--Gracie has had this issue for years, and her cycles sometimes run several days. Sadly, though, I don't think she's gotten any answers from the doctors about this.
I hope Ben improves soon and doesn't have to endure a bunch of testing.
Hi Amy,
Hoping that the trend of better tolerance has continued now that you've upped the concentration of Ben's formula.
I am still available to talk if you'd like to... Gracie is home now. We have a surgery consultation in the morning (Tuesday morning) but I should be home most of the day afterward. Let me know... I am happy to call you whenever it works for you.
:-)
Hi Amy. I just read on FB that you've been having these issues with Ben. I was sorry to hear that. We're going through some similar issues with Luke. Luke goes in cycles of on and off crying for days at a time, then followed by a few days where he seems better. We have ruled out many things which leads me to believe that it's all related to his diet/formula and possibly abdominal migraines. Trying to get the docs to believe this theory (since they have no other ideas) and suggest a new formula has been the hard part. We recently saw a new doctor that actually has some opinions on his diet and seems to "get it", and of course happens to be on vacation for 3 weeks, so we wait some more. It's so frustrating watching our kids go through these miserable episodes, and not having any answers. I hope you're able to get some relief for Ben soon. I will keep you posted if I come up with any good suggestions from Luke's new doctor. I'm really keeping my fingers crossed. Take care and big hugs for both you and sweet little Ben!
Shelly and Luke
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