childhood disintegrative disorder Archives - Page 242 of 276

The decision has been made

We just got out of Gavin's appointment, and my God it took forever. The two and a half hour wait sucked but I can't really complain because they squeezed us in. This appointment was purposed to discuss Gavin's medication, specifically the Clozapine and it's impact on his health. I'm exhausted after all of this, and I'm going to make this as quick and painless as possible. After discussing the possible options, we opted to go with Lizze's approach because it was the most conservative, and it was also a really good idea. ☺ Basically, we are reasonably sure that the Clozapine is at least one of the contributing factors to Gavin's blood related issues. If fact, it's likely to be the biggest overall factor but there are also other things…

2 Comments

August 29, 2017

Clozapine / Gavin / My thoughts

We may have a very, very difficult decision to make today

In the morning, we have an emergency appointment with Dr. Reynolds, Gavin's psychiatrist. This is an emergency appointment to decide on the future of his Schizophrenia management. This is an enormous decision because it can potentially impact the rest of his life. If we take Gavin off the Clozapine, he will never be able to go back on it again. It's very important to understand that at this point in time, there isn't another antipsychotic that he can safely take. Taking him off the Clozapine could very well mean that we set Gavin up to be an unmedicated Schizophrenic for the rest of his life. While we're mauling that over, there's another side to this coin. If the Clozapine is what's causing the issues with the cell lines in his…

8 Comments

August 29, 2017

Bad Reaction / Gavin / Immunology / IVIG Infusion / My thoughts

Gavin just finished a very painful infusion

Poor Gavin had a really rough IVIG infusion this evening. Everything went as it normally does but for some reason it was really painful. Every once in awhile, Gavin's infusion will be incredibly painful. I haven't a clue as to why this is, but it could be related to something as simple as needle placement. Maybe the needles were sitting funny or for some reason, the medication burned as it was going in.. Thankfully it's over with and the pain has subsided but I really hate when any of my kids are in pain. 🙁

0 Comments

August 28, 2017

Gavin / Immunology / My thoughts

How do I protect my son when it’s his own body hurting him?

I received a call from the pharmacy this afternoon. He was calling to let me know the results of Gavin's lab work from last Friday. The labs came back and it's bad news. Gavin's WBC is at 3.9, down from 4.8 (8.08.2017) and his Absolute Neutrophil is at 2.2, down from 2.8 (8.08.2017). I'm so worried about him that I'm getting sick to my stomach. I've spoken with immunology to make sure they are aware but we are being referred to hematology and oncology. There's a particular doctor we are being referred to at Akron Children's Hospital who's supposed to be one of the best when it comes to blood disorders. I'm currently waiting for an appointment and the appointment is waiting for a referral. All that is being worked…

0 Comments

August 28, 2017

Emmett John / My thoughts

Problems with lunch

We had a lunch issue today with Emmett. When Lizze packed his lunch this morning, she packed him cold pizza (the only thing he would eat in his lunch for years), apple sauce, yogurt, jello and a juice. In the way to school, Emmett informed her that he no longer eats cold pizza. I've known about this on and off for a few months but had really been an issue until school started back. Anyway, after walking this morning, I went and bought a couple packages of poptarts. If he'll eat that and the rest of his lunch, he'd be in good shape. The few flavors he will eat weren't available at the time and so I guessed. I dropped off one package of Strawberry flavored and one package of…

0 Comments

August 28, 2017

My thoughts

I had a great morning

It's been a pretty awesome morning. I was able to get my walk in and while exhausting, it felt amazing. I walked about four miles with my Mom and it was a great way to start the day. I'm feeling really motivated today and that's exciting for me. ☺ I can't wait to keep moving forward.

4 Comments

August 28, 2017

My thoughts

If only it worked that way

It seems like plans only exist in order for them to change at the very last minute. Ugh!! Elliott's been awake since about 2 AM this morning, with a fever and headache. There's no wiggle room with this because he's running an actual fever and not just exceeding the arbitrary number the school has chosen labeled a fever. This of course has created an issue for Emmett because he always eats breakfast with Elliott in the morning before going to their respective classrooms. Emmett will be going to school and he's going to like it.. 😁 If only it worked that way. We're working to get Emmett out the door because he's afraid to go to school without his big brother.

0 Comments

August 28, 2017

Gavin / Immunology / My thoughts

I’m hoping for good news today

After I get home from walking today, I'm going to devote the rest of my day to finding out the results of Gavin's lab work from last Friday. We need to know where is numbers are because they've been dropping very low but also because he's been getting sick for the last week. If his numbers are low, that could be why he's been getting sick and it's something to worry about. If his numbers are okay, then we have far less to worry about.

0 Comments

August 28, 2017