Read more about the article The solution to Gavin’s immunology crisis was completely unexpected
Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / My thoughts

The solution to Gavin’s immunology crisis was completely unexpected

We've been so stressed out since learning about the GAMMAGARD shortage. GAMMAGARD is the medication used to treat Common Variable Immunodeficiency, of which Gavin has. Basically, GAMMAGARD is donor antibodies from thousands of people and is used to replace Gavin's broken immune system. There is a nationwide shortage of GAMMAGARD and that presents huge problems for Gavin. Without treatment, Gavin doesn't have a functioning immune system and for those wondering, that's not a good thing. We had our emergency appointment with his immunologist this morning and everything went smoothly. Without going into great detail because I'm just not in the mood to do so, I'll sum things up. The manufacturer of GAMMAGARD says its on back order. From what we've heard, it sounds as though this is a manufactured shortage…

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June 18, 2018
Read more about the article 1 phone call has sent me into a complete panic
Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / My thoughts

1 phone call has sent me into a complete panic

I wrote about frustrations and explanations for why guardianship hasn't been completed for Gavin. I was explaining how things keep coming up that force us to reprioritize everything. See: I'm going to need an attorney. Not twenty-four hours go by and we're slammed once again, with yet another potentially life threatening issue. I received two very early morning phone calls today. One of from the pharmacy responsible for managing Gavin's IVIG infusion supplies and the other was from his immunologist. Turns out that there is an ongoing, nationwide shortage of GAMMAGARD, the life-saving medication that consists of donated antibodies from thousands of people, used to provide Gavin with a temporary, functional immune system. Gavin has something called Common Variable Immunodeficiency, see What the Hell is Common Variable Immunodeficiency. In laymens…

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June 13, 2018
Read more about the article I’m going to need an attorney
Autism Parenting Confessions / Gavin / My thoughts

I’m going to need an attorney

I spent the afternoon, going through the paperwork that needs to be finished up in order to file for guardianship of Gavin. I'm not sure Lizze and I can both be guardian's, as the paper only references one person or applicant. Maybe I'm wrong. I'll be very honest with you. While we haven't blown guardianship off by any means, it hasn't always been the number one priority either. When you're a special needs parent, there are always things that come up and we're forced to reprioritize. It's not that guardianship isn't important because it's extremely important but between other health related issues, both physical and emotional that pop up, there's only so much we can do. We've been in a slight holding pattern because we have to get paperwork back…

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June 12, 2018
Read more about the article Gavin’s orthostatic testing results from our @ClevelandClinic trip
Cleveland Clinic / Gavin / My thoughts / Orthostatic Testing / Pediatric Neurology

Gavin’s orthostatic testing results from our @ClevelandClinic trip

I have a much larger update planned but for the moment, I wanted to let you know how Gavin's orthostatic testing went at the Cleveland Clinic yesterday. Whenever Gavin see his neurologist at the Cleveland Clinic, they have to do orthostatic testing because he has autonomic dysfunction.. Orthostatic testing is simply taking his vitals but doing so while he's physically in different positions. The point is to see how his body physically responds to changing positions. In a normal, healthy person, there shouldn't be much difference between vitals taken while lying down and standing up. Orthostatic Testing Results: Lying Down 114/68 HR 99 Standing Up 118/77 HR 121 These results are considered to be mostly normal and that's a very good thing.. ☺

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May 23, 2018
Read more about the article Managing Gavin’s meds can be a huge PITA
Clozapine / Gavin / My thoughts

Managing Gavin’s meds can be a huge PITA

One of the more frustrating parts of being a special needs parent is dealing with medications. One of the most frustring parts of dealing with medications is getting them filled on time. Gavin is on an antipsychotic known as Clozapine. Clozapine is the most tightly controled medication in the US. Clozapine requires bloodwork before each refill and because of Gavin's recent bouts with Neutrophilia, he can only have seven days worth of pills at a time. He can't miss more than one dose or he will have to be pulled off the meds. These refills are extremely time sensitive That means four times a month he needs bloodwork and I need to worry about his refills. There's a very specific process that must take place in order to get the…

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May 14, 2018
Read more about the article This is why we have to watch Gavin so closely around food
Autism Parenting Struggles / Gavin / My thoughts

This is why we have to watch Gavin so closely around food

Gavin's not feeling so well. It began last night with him overeating at the cookout. Gavin has never been one with a functional ability to self-regulate. As an example, he doesn't ever really feel full when he eats. What happens is he will eat too much and end up making himself sick. He's been doing better over the last few years because we've been trying to create habits for him to help compensate for what his brain doesn't do correctly on its own. Unfortunately, we still have times where Gavin will eat and eat and eat, until he makes himself sick. Last night was a perfect example. When we're at home, it's much easier to monitor what he eats but when we're somewhere else, it's much more challenging. We dropped…

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May 13, 2018
Read more about the article This isn’t good
Clozapine / Gavin / My thoughts / Schizophrenia

This isn’t good

I spoke previously about Gavin changing the way he takes his medication. I also shared how we suspect that the voices in his head are the ones telling him to do this because it wasn't us (see As if life wasn’t already hard enough, it seems the voices are back). We're seeing further evidence that the voices have returned. So far this afternoon, Gavin has come down from his room on the second floor because he swears we called him to come down. We haven't called him down and that leaves one of two possibilities. Either he just thinks he's hearing us and wants to double check or he's actually hearing us call him in his head, even though we aren't. Gavin is Schizophrenic and has been experiencing both audio…

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May 12, 2018
Read more about the article As if life wasn’t already hard enough, it seems the voices are back
Clozapine / Gavin / My thoughts / Schizophrenia

As if life wasn’t already hard enough, it seems the voices are back

Last night, Gavin came downstairs after being in bed for a couple of hours, mumbling something about a glass of water and claiming to be wheezing. He was heavily sedated and that's not necessarily normal for him. With no changes having been made to his meds, there shouldn't be any change to the way they impact him. This morning, I mentioned to Lizze that something wasn't right last night and I wonder if he's taking his medication, specifically his Clozapine, correctly. We were prepared to write if off as a one off event and move on. Right about that time, Gavin came downstairs and I asked him about last night. As I suspected, he didn't really remember what happened. I then took the opportunity to ask him about whether or…

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May 12, 2018