Second Guessing EVERYTHING

Saturday, March 29, 2014

We have always had issues with Joel not eating but most doctors just take a note of it and move on even though they tell us his medication is known for causing lack of appetite. Since Joel wasn't having seizures they didn't want to rock the boat by switching meds. On one hand I get their reasoning but then again, my child never eats and I'm concerned about his health & weight. It's not fun to go to bed at night worried that your child is hungry because he wouldn't eat anything (once again) all day. Not even snacks.

When we met with the TS neurologist in Cincinnati he agreed that something needed to be done to help. I'm in the process of trying to get Joel into a feeding therapy which he agreed was a good idea, but he also suggested changing meds.  Unfortunately there are no tests that can be done to figure out if the lack of appetite is from the current seizure med or just Joel being super picky so all we can do is switch to something else and see if he starts to eat. 

He also mentioned they don't normally give his current medication to TS patients, especially children, because it can stunt developmental growth and is known for causing appetite loss and break-through seizures like Joel was having around the holidays. (No one ever told us that it could harm Joel's development. Isn't that nice?) 

The med he suggested we try is called  Sabril. It's a medication that has great success in TS kids. The only issue is that it can cause vision damage which is a big concern for me. I know every seizure medication will come with a risk of a scary side effect but how do we know which one is worth the risk? If we decided to try Sabril and Joel ends up with vision damage I would never forgive myself. The whole drive home I went back and forth on whether we should try it or not. I decided to call the clinic the next day and ask for different treatment options. I know Sabril is a very aggressive drug but I don't feel like Joel really needs that at the moment. If he was having seizures multiple times a day I wouldn't hesitate to try it, but he's not. The neurologist even said Joel is doing very well for a TS patient.. So there has to be something else we can try first, right?

The hardest part of parenting Joel is that I'm ALWAYS second guessing EVERYTHING when it comes to his medical. Some days it's just too much for me to deal with and I end up crying my eyes out while Jeremy holds me and tells me everything will be ok. Every parent wants the best for their child.. but imagine if the best for your child comes with scary risks.. That's what I'm dealing with and it's not easy nor fun. I just want to him to have a healthy and happy life. I pray every day that God will give me wisdom and guidance because.. honestly... I have no idea what I'm doing. 

No comments:

Post a Comment

site design by designer blogs