It began with us driving three hours to the neatest pediatric clinic that dealt with his disease. (Here is where EFMP, Exceptional Family Member Program, can come in real handy.)
At first they had no idea on how to handle him. Because of his age he was the youngest the state had seen. They were not sure if treatment would work or what lasting side effects the treatment could pose. But there is no other option. There is no cure, just a treatment.
We started out at 7ml of Hertzina every four weeks. At this point we were now traveling three hours one way 2-3 times a week. When I say we I mean Bug and myself (I was 6 months pregnant with Diva).
His treatments lasted hours. They would admit us to same day out patient in a children’s infusion clinic. He would get doses of Benedryl and Tylenol. They would take his vital signs and we would wait for them to prepare everything. They were always afraid of a allergic reaction. So he was watched like a hawk.
Finally they would insert a iv. His treatment was called IVIG. His medication went in interveniously. All we could do was watch movies, play games and sleep. But at 18 months old he didn’t understand what was going on.
It would take 4 nurses and me to hold him down to get a iv in. Then we would cocoon him until the Benadryl would kick in and knock him out.
It is a mothers worst nightmare to see their young child hooked up to iv’s and monitors fighting against every body trying to help. I cried. Every month.
His reaction never got better. Although his health improved. It wasn’t good enough. Every third week he would end up sick and on antibiotics again. Eventually I was making those weekly trips with Bug AND a colicky Diva. Talk about wanting to run screaming out of a room. One child screaming because of fear and a incurable disease and one screaming newborn. (Hubs was in training this entire time and could never attend any doctors appointments or treatments).
After months of road trips our orders for Hawaii came through and we were on a entirely new adventure.
We landed in Hawaii and immediately had to continue on with Bugs treatments that week. But getting settled with new doctors and a new state, let alone on a island was a tough road to travel.
There is one doctor here who at the time was dealing with one other boy Bugs age with the same disease. To my knowledge they were the only two in the state (since then the other patient has moved and is in remission!). Bugs new doctor was adimant in a new treatment plan. However, the description of it was something we both felt was not in our sons best interest. We had no choice. His doctor refused to refill Bugs “prescription” for the IVIG treatment.
Our hands were tied. No longer would Bug received his IVIG every month. He would now get a new treatment every week.
Sub Q is a alternative form of treatment for this disease. The cons associated with IVIG was that at a certain point (week three for Bug) the valley would hit. The bodies antibodies levels reached a peak within the first week. Then slowly the numbers sluff off and fall into a trough causing the bodies immune system to become compromised.
With Sub Q, the body has no peaks and troughs and instead maintains a common baseline average. Although in theory Sub Q seems like the better choice, once we realize that meant inserting needles in our child weekly it scared the crap out of us.
We have now been doing Sub Q for over a year. It is still a weekly nightmare. Even though we numb the sight the fear and anxiety always sends Bug into a panic of kicking, screaming, biting and flailing. The sobs of my son breaks my heart. I will never forget his pleas he screams every week. “Mommy don’t hurt me!”, “mommy, ill do anything!” And “mommy don’t you love me?”
It’s hard, I just want him to understand why we have to so this so bad. But he doesn’t get it. Of course; why would he? To him nothing is wrong. He is hardly ever sick and doesn’t remember how it used to be because he was so young.
One day I hope he understands. And one day he will be able to do them on his own. I hope. But until then we battle on. Normally Hubs is at work and it is left to me and a volunteer to help.