We’ve heard back about some of Silas’ labs from when we went to SC, and Autumn recently had a follow-up with the immunologist.
I’ve mentioned the wide range of responses that I get from doctors regarding Silas’ health. Some see that he’s gaining weight and seem unconcerned that he’s not getting an adequate diet. Others act like I’m a horrible mother because I’m not adding in a multivitamin – even though every one we’ve tried so far has made him scream in pain.
Dr. M’s nurse called and said that Silas’ prealbumin levels are off, which means he is starting to show signs of malnutrition – even though he is gaining weight. His BUN was also off. They said he is most likely not getting enough fluids. This is the second time a test has indicated that. What is puzzling is that all he drinks is water, and he already drinks about 30 oz. a day. I’m not sure what that means at this point, but I’m supposed to try to increase his water intake.
I’m not sure how to correct the malnourishment when he cannot tolerate sugars – even the good ones in fruits and vegetables. Dr. M had given us some Neocate Splash to try, but it didn’t go well. Silas still hasn’t completely recovered from that yet. Dr. M’s dietician is very nice, and talked with me over the phone for about 30 minutes, trying to figure out some type of supplement he could take. Since he’s able to swallow small pills, we’re looking into breaking adult pills into smaller pieces. Adult pills generally do not have the sugars that are added into all of the children’s supplements. We can only hope this will work.
Autumn recently had her follow-up with the immunologist (Dr. I). It was during our last visit with Dr. I that she fainted, hit her head, and had a seizure. (See this post for the details.) He took more blood before we left. He wants to see how her body processes vaccines. He is also redoing her ANA Test (which was positive last time) as well as adding tests for antigen stimulation and NK function. He can’t say exactly what the positive ANA Tests means, but it could be an indication that something else is going on.
I warned the nurse that Autumn is prone to vasovagal reactions, so they had Autumn lay down on the table (instead of having her sit up in my lap) to take her blood. What is so ironic is how much Autumn talks while they are taking her blood. For most doctor visits, she will not speak to anyone, but when they go to stick a needle in her arm, she talks non-stop. In the past, it’s been a somewhat of a normal (quiet) voice. Not this time. She protested loudly the entire time. I felt very sorry for everyone in the waiting room. Some of their children had not yet realized they were about to be poked until they heard Autumn’s cries for help.
Here are some of the things you would have heard if you were in the waiting room that day:
“Are you done yet?”
“You’re hurting me!”
“I want my daddy.”
“Done. Done now.”
And when I tried to assure her that she was going to be fine.
“No, I’m not going to be okay.”
Although there was no throwing up or seizures this time around, there were several moments when she lost consciousness for just a few seconds. She would be in a middle of a scream, suddenly close her eyes and go to radio silence and then, just as quickly, open her eyes and resume screaming.
She was very pale by the time they were done. I made sure she got up very slowly and sat with her a few minutes before we left to make sure we didn’t have any of the complications we had last time. As I carried her out of the lab room, everyone in the crowded waiting area just stared, trying to figure out if we were the ones responsible for all of the loud, torturous screams.
I just smiled, held my head high, and carried her to the van. At least we made it out of there without puke all over our clothes or another seizure.