So very grateful Aidan is okay.
My biggest stress was doctors usual careless attitude about giving Aidan the IVs I knew he needed (from much past experience) to pull out of his downward spiral. I prayed and prayed we'd get doctors that would actually look at him, listen, and care. It's really sad that even doctors who are acquainted with us, are quick to assume and refuse to listen. Unfortunately, I've found it to be the norm. If your child has typical health, it's never really a problem. But for our boys, it's devastating. Particularly for Aidan.
With Aidan's primary physician on vacation, it really complicated things. I made phone calls to his Neurologist and Metabolic Geneticist, because he had such a dramatic increase in seizures. In the end, it was the Metabolic Geneticist and a decent ER physician (the one we are used to dealing with is not decent) that finally helped Aidan.
His MG, though on vacation himself, checked his email. His nurses had explained the situation, and he gained access to the additional information I'd given Neurology, and then made a very welcome phone call with instructions for an IV formulation that included Glucose (something no one was adding) and not just the Zofran and Saline. He also believes it's very possible a big part of what is happening to Aidan is when he starts to vomit, he has no reserve (he's very skinny) which sends him into ketosis, which makes children his age vomit even more. A vicious cycle that can't be broken until several IVs later.
This time, it took 5 IVs to pull Aidan out of it.
The first time this happened was when Aidan was barely 2.
He'd had a reserve then, until the vomiting, that appeared to get bad from having too much phlegm during a cold, took over and he ended up in the hospital for severe dehydration. He never gained the reserve weight back after that, and he's gone into these vomiting, seizing, cycles so many times now, I lost count. When he actually gets a stomach virus, instead of just a cold, it's pure hell for him.
Each time, I have to argue with doctors, go back when a different doctor is there, etc. to get him the IVs he needs. And each time, the episode is worse than the last. This one was bad enough I was prepared to take him to UT if they wouldn't have given him what he needed here.
We've got to figure out what's truly triggering it. Is it the seizures, or is their something in his GI system triggering it? And we've got to figure out a way to get him fattened up a little. Believe me, I've tried and obviously failed. Repeatedly. Now I'll admit, I don't bake goodies everyday. If I did, I'd be 400 pounds and Aidan would still be a puny 34. But I do put extra calories in everything he consumes, like adding chocolate to his milk, giving him cookies everyday, etc. And I make sure he gets plenty of whole grains and protein, for sustaining blood sugar levels and providing long term energy.
The MG suggested giving him chocolate milk with 2 Tbsp uncooked cornstarch in it at bedtime. It gives a slow release of glucose through the night, that can help a child gain weight. But, of course, Aidan refuses to drink it... it makes him gag. I tried it and it made me gag too. We'll have to come up with something else.
This time, it took 5 IVs to pull Aidan out of it.
The first time this happened was when Aidan was barely 2.
He'd had a reserve then, until the vomiting, that appeared to get bad from having too much phlegm during a cold, took over and he ended up in the hospital for severe dehydration. He never gained the reserve weight back after that, and he's gone into these vomiting, seizing, cycles so many times now, I lost count. When he actually gets a stomach virus, instead of just a cold, it's pure hell for him.
Each time, I have to argue with doctors, go back when a different doctor is there, etc. to get him the IVs he needs. And each time, the episode is worse than the last. This one was bad enough I was prepared to take him to UT if they wouldn't have given him what he needed here.
We've got to figure out what's truly triggering it. Is it the seizures, or is their something in his GI system triggering it? And we've got to figure out a way to get him fattened up a little. Believe me, I've tried and obviously failed. Repeatedly. Now I'll admit, I don't bake goodies everyday. If I did, I'd be 400 pounds and Aidan would still be a puny 34. But I do put extra calories in everything he consumes, like adding chocolate to his milk, giving him cookies everyday, etc. And I make sure he gets plenty of whole grains and protein, for sustaining blood sugar levels and providing long term energy.
The MG suggested giving him chocolate milk with 2 Tbsp uncooked cornstarch in it at bedtime. It gives a slow release of glucose through the night, that can help a child gain weight. But, of course, Aidan refuses to drink it... it makes him gag. I tried it and it made me gag too. We'll have to come up with something else.
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