On Tuesday David and I went to get "hooked up" for his 48 hour EEG. After his previous tests we decided to have the 48 hour EEG to get a longer study that included both awaking and sleeping. David had all of the electrodes put on on Tuesday and was scheduled to have them taken off on Thursday.
If you have ever had an EEG, they are not painful, but they are not necessarily pleasant either. It is a pain to have 20+ electrodes stuck to your head and chest. Because David was having this done as an outpatient he also had to have part of the recorder on his head, and then had to have his head wrapped up. He also had to carry a small computer monitor, which was recording all of the information, at all times. While these things are not terrible, they are annoying, especially when you are a kid. It didn't help that a few of the electrodes were located in the same area as his glasses, thus rubbing uncomfortably. It also did not help that it was not a comfortable way to sleep.
On Tuesday evening I notices that David's cheeks were getting very flush and starting to rash. By Wednesday he had a full on rash cover his cheeks and his back. I contacted his neurologist because his new medication can have a rash side effect and it also has a risk for Steven Johnson's Syndrome. The on-call neurologist had me keep his medication the way they were (he was supposed to be starting an increased dose that night) and was going to have his neurologist follow up the following day.
By Thursday morning David was covered from head to toe in a red angry rash. It was the most pronounced on his face and it was continuing to spread. When the neurologist called he advised to stop his new medication as he was having an allergic reaction to the medication and there was a high concern he was having a Steven Johnson's Syndrome reaction again (David had Steven Johnson's Syndrome in January of this year from a different medication). As the morning progressed, and by progressed I mean getting up and getting clothes on, David was horribly uncomfortable. We headed to the hospital to have him "unhooked" during which time he could barely sit still he was itching so much and he was crying he was in so much discomfort and pain. Once he was unhooked from the EEG we decided to walk over to the ER and have him evaluated.
They took him in immediately and examined him. They put in an IV and took a great deal of blood work and then began giving him multiple medications including benedryl and epinephrine to stop the reaction. Luckily it helped, unfortunately it didn't last. David's rash was spreading close to his eye and he was starting to run a low grade fever, that combined with the fact that they could not control his pain/itching discomfort, they made the decision to have him transported to the hospital closer to our house and have him admitted.
Let me say I am so happy they admitted him because after the night we had last night, there is no way we would have been able to control his pain/itching discomfort from home. In fact we were up most of the night because he was miserable. We are continuing to struggle with the fact that they are having a very difficult time controlling his comfort level. It seems that both medications he is taking for the itching wear off within the first two hours, however he can only get the medications every six hours. And while they have tried to taper them, we are really struggling to keep him comfortable.
The neurologist saw him this morning and decided, despite some improvement he wanted to have David remain in the hospital for at least one more night and he and the pediatrician would re-evaluate on Saturday. Again, I am thankful for this because we are still having such a hard time maintaining his comfort level. At this point we know we will be here until at least Saturday with the possibility of staying until Sunday.
As for continued treatment, like everything else, we just have to wait for it to leave his system. He will also now be considered allergic to this medication too and as his neurologist says he is getting harder to treat because the list of available medications is narrowing and the concern for allergic reaction is increasing. For now we are hopeful the anti-itch medications will do what they are supposed to and his rash will continue to recede.
David Hanging Out In the Hospital
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