Surviving the IVIG Infusion

Today’s gotten off to a really rough start.  Lizze was up all night again and Elliott wasn’t feeling well.  Everyone was in edge and Gavin needed to get to Akron Children’s Hospital for his monthly IVIG Infusion. 

While it was like pulling teeth, we finally got underway.

The boys got to school on time and I got Gavin to the outpatient infusion lab a little bit early.  Early is good because that means sometimes we can get started early and end earlier as well. 

As far as surviving the IVIG Infusion goes, I’m referring to the entire process, from the car ride up to the car ride home. 

Sometimes Gavin can’t even handle the car ride to Akron Children’s Hospital without going fine an Autonomic Crisis. In fact, that’s exactly what happened during last month’s infusion. 

So far so good. 

We made it here without any problems.  Gavin’s vitals are done and he’s being prepped to receive the IVIG.  The only thing that’s really concerning me at this point is his weight.  He’s down 5 lbs from last month. He weighed in at 115 lbs.  I’m not sure what’s going on but we need to get him to the pediatrician, just to be safe. 

I’m hoping to be done around 1pm today, so I can be home I  time to get the kids from school.  I really enjoy picking them up from school. 🙂

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rmagliozzi

We decided to run the test because we felt we had addressed every health issue he had and we were not making progress. It showed his biochemistry and how it was diferent due to genetic mutations. I found out lots of stuff like he can’t absorb regular folic acid and B12 and ends up anemic due to the B12 thing, that he can’t handle a lot of methyl donors, like in caffeine or stimulant medications for ADHD/ADD, and he needed lots of vitamin D for the rest of his life, and other things showed us he did not break down hormones or neurotransmitters well. It was really helpful.

rmagliozzi

Probiotics are different.They are healthy bacteria and also can help with digestion. enzymes are made by the pancreas and we also get them from food like avocados, bananas, papaya, etc. They help us break down and absorb our food. Most with chronic conditions, neurological problems and other health issues have poor digestion and may be lacking in both probiotics and healthy bacteria. Those who don’t absorb Vit. D well have poor pancreatic function and doing enzymes addresses this. We found this out on my son’s genetics report. It recommended he take enzymes. Rob, for $99 you can run the same test on Gavin and find out what his body is not doing biochemically that it should be doing. You can run this report through genetic genie and get a whole list of genetic mutations he has and a list of what dietary changes or supplements can help address these things his body is not doing well enough. We got the test at 23 and me.

Lost and Tired

@Colleen Kenny Murphy rjones22 rmagliozzi If you’re referring to probiotics, than no, he’s not.  I think we need to start by trying to track his Caloric intake and see where we are at.

rmagliozzi

Has his Gastro doc thought about prescribing digestive enzymes for him? I have a friend who’s child has cystic fibrosis and autism, and that’s really helped him keep weight on. I have a younger child with PANDAS who is pretty underweight, and our naturopath said she is going to have him take digestive enzymes to help him absorb his food better. Hopefully its just that Gavin’s growing fast, and all is okay with him.

Colleen Kenny Murphy

Good luck.

rjones22

gavin reminds me of my boy. how tall is he? my son is 5’6″ and is now up to 117lb with shoes jeans and two t shirts when we went to the dr monday. he still feels nauseas and just “doesnt feel good” I know it is so hard for you guys that your kids cant tell you how they really feel, but it is also frustrating for me with a NT kid as he can’t really tell  me what that means. He just doesnt feel good. i dont know if gavin is on anything for add or adhd. my son is on adderal so he can focus, but he only gets 10mg after 1500 calories and then another as soon as he eats another 1500 calories. He is allowed by the dr 10 more mg but right now i am not giving him that option as he was down to 107 and it scared me.

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