Gavin’s had a really rough day. Behaviorally he’s been doing pretty good but health-wise he struggled.
It all began when he woke up this morning with some plumbing issues.
This caused a several hour delay in his IVIG infusion because not feeling like he could sit through it without making a dash to the bathroom.
Once we did manage to start the process it was delayed again because the pump stopped working. Then the side cramps began and I almost stopped the infusion because he was in a great deal of pain.
He did make it through and pain went away.
When he was done, he went to bed and slept for most of the day.
Before dinner we had to run to the store to pick up a present for Elliott’s best friends birthday party tomorrow. Everyone went along for the ride and Gavin ended up having more problems.
We’re gonna have to get him back to the gastro and figure out what’s going on.
What’s kinda frustrating because when it comes to Gavin’s health, we never really know for sure what’s actually going on. So much of what he complains about is not something we can visually see for ourselves.
We can only relay on what he has to tell us but we know that he does fake his symptoms. Trying to figure out when he’s faking and when he’s not is something that I hate…..
I’m truly hoping that tomorrow is a better day for him…..
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i feel the same way (except for the faking, believe your kid till you have video proof that he is lying and then continue videoing, just my 2 cents as believing my kid saved his sanity) about knowing when to run to the doctor. when the kids were little i would run for everything. now that he is big but is sick with weird autoimmune diesease behcets, i dont know when to run to the doctor or what for. he has stomach issues as well. he has been sick since 11 so i still beleive he just doesnt realize/know that “regular” people on occasion have real bad stomach aches that make you want to come off the tolient or scream or cry or get sweaty or nauseas. it is only occasioal for regular people to do that but sometimes it is what it is. the sore throat is another, is is strep or not. headache is it a headach a migraine or worst something happening with the brain or whatever. foot hurts. it is hurt, it is fractured, is it srprang or did he wake up with a foot ache for no reason that again “regular” people wake up with weird hurts for no reason and it goes away. it drives me crazy. when he had to stay in the hospital recently for two weeks (mandatory antibiotics because his mouth ulcers turned to mrsa/staph) obviuosly i should have taken him to the dr sooner but that is hindsight 20/20. but then again his mouth ulcers were infected. the fact of the matter is the dentist have never seen anything like him and really don’t want to sadly. rhuematologist cant help as all he can do is give pain meds, oncology cant help as it is not cancer. infectious diesease can help but i save him for emergencies (that i didnt think this was and it obviously was) as he doesnt see any patients except son by appointment (he is the infectious diesease dr that they call in to see people that no one knows what is going on). he just happens to really love and care for my son (i am so fortunate) and is interested in what he can do to make him better. I dont take my son to a regular doctor cause they dont understand what to do about him either. if i would have taken him to the dr they would have given him antibiotics by mouth which would have made him sick plus they would not have been vancomyicin which he needed so i would have wasted time and money. the only thing that gave me a clue about how bad it was is that my son said after during the ivig that he was not leaving the hospital like he was which means he needed to be admitted. if he says he needs to be admitted he has to be practically on his deathbed as he hates the hospital with good reason. the oncologist that was giving the ivig was going to let us go home and he finally said “do you want to be admitted”. I said that if he wasnt admitted we were going to have to go to the emergency room or go by infectious diesease. he didnt understand the relationship we have with infectious diesease (he said it takes months to get in/which for regular people it does) so he admitted him and infectious diesease came and fixed him. so what do i do next next (and there will be a next time). go to where or who. is it bad enough for infectious diesease or not. how do i know. it makes me crazy. all of that to say i am there with you on the lost and tired journey