Monday morning Cody and I and the boys were up @ 4:30 to go to Omaha for a neurology appointment for Carter. His appt was @ 8:30 and so it was an early day! His neurologist, Dr. Pavcovik is a somewhat quiet guy, but very nice.
The medicine that Carter has been on is called Neurontin, which is a medicine that treats seizures, although Carter doesnt have and has never had seizures. He has what they call brain irritation and so it works to 'stabilize' Carter's brain. This medicine we started back in January, and although it has worked great for Carter, it has also caused weight gain for him. Monday I expressed my concern for Carters weight to this doctor only to find out there is another medicine out there he could be put on called Topamax. Topamax goes the other way, and may actually cause weight loss. Carter has gained about another 5 pds since January and I think 5 pds on him is like 20 pds on us. Carter has already faced a gross motor delay and so the weight gain doesnt help him out any. So Monday we started the switch, the doctor gave us a schedule to follow to wean Carter off of Neurontin and on to Topamax.
Since we starte this transition, I have noticed more unsteadiness, more pain cries, and a few more falls. I absolutely dislike that Carter has to go through this but I do know that the end result should be worth it for him..I pray I am right and that this medicine works as good or better than the Neurontin. Pleases pray the same for Carter.
It is so hard as a mom to watch my son go through brain irritation. No parent wants to see their child in pain. The irritation causes such painful headaches for Carter, the only good thing is that they never last too long; thank goodness. I honestly would trade places with Carter if I could. Sometimes I question why my son, why Carter, but then I try and remember that we all face our own battles..Some of them medical as Carter, some of them emotional, some very personal that no one else knows, some public for others to judge/critique, etc etc...I pray that thru Carter's some what public, some what personal medical and physical battles, he will come to rely on God fully when he needs to. I hope that one day he will look back and say- 'I went thru all of this so that God could use me to help others who are facing similar battles'.
I am so thankful for Carter, and also for Cody and Camden. It is very rewarding to have such a wonderful loving family and although times can be and are tough, having them makes it all much better. Thanks to our wonderful friends and family also who have given us support..Your kind words and help mean so much to us.
I will update as we get further into the 4 week weaning of the medicine and how it is working for Carter.
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I've been waiting for you to blog about the med change...it sounds absolutely terrifying and can't imagine how it feels to watch Carter be in pain and not able to control the imbalance he is experiencing!
ReplyDeleteI love how you are so positive about your blogging, how you address the hard things, but then make us all aware of the good things.
I hope these four weeks go by fast...and just an FYI, I worked with quite a few adults that were on Topamax and I recall it being a very, very good med. I don't recall a single one taken off of it in the few years I worked with these clients.
I took one dosage of Topamax (to try to help my migraines) and immediately had some pretty negative side effects and got off of it. It was hard for me to be told that if I were to become pregnant, they would recommend abortion because of what it would do to a baby. I would do your research on this one Jess.
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