Wednesday, March 10, 2010

Medication woes

So Mike, and I talked about the medication that the doctor is wanting to give Jude. We both did some research on it, and there are not just a few cases of fatalities, NUMEROUS cases. In addition they aren't sure if it's the individual medication causing the deaths, or the combination of the drugs once you add the Febatol. This made us both very uneasy. When Mike, and I decided to proceed with the pregnancy we decided to take Jude however he was born. We were thrilled when we were told he was normal, but accepting when we finally heard he wasn't. We also decided that we would never do anything to increase the chances of Jude's Demise. We feel if we gave him this medication, and he should have a reaction to it, we would be failures. Also, it takes anywhere from 5 - 30 weeks to know if the person taking the medication is having a critical reaction to it. So we are so very torn!

My understanding is this medication is normally given to adults. I trust our neurologist completely, and this is our assumption of what his reasoning is. He mentioned the name Lennox-Gastaut Syndrome, but has never officially said Jude has it. Although I know our Dr, and he would probably just say "Yes it's likely he has it, but it doesn't matter because he has to be treated regardless of a label". Basically it's a very severe form of epilepsy. You can read about it here:, it's my understand they now think strokes can be a factor of this syndrome. So my guess is that the Dr already knows the other medications will not work for Jude. It's also the reason he immediately went to Depakote vs a less aggressive seizure medication. He knows Topamax, Pheno, etc won't work, so he is jumping ahead to one he believes will help Jude. So what do we do? We did find some great posts regarding the medication like this one: So we are still struggling with this medication. Mike did say he would want Jude to have a G button prior to getting on the medication because of the possible vomiting, and weight loss.

Poor Jude, just breaks my heart. He is so cute, and he just smiles when he is held. He is a great baby, but we know he won't be a baby for long. So our assumption is the Dr will tell us we don't have to give him the medication, but without it he will never be more than three months mentally. The is a part of us that is accepting to that, but is it fair to Jude? It's a struggle wondering which path you should choose. Before Jude I always was a great decision maker, but now I get stuck.

Jude woke up at 3:40 last night, and was very upset. I brought him to bed with me, and he was quiet, but when I tried to move him back he got upset again. That time Mike grabbed him, and Jude was quiet on Mike's tummy, while Mike slept. Then Jude got upset again, so I took him, and we cuddled up and slept together. He was quiet as long as I was sleeping with him. This morning Jude woke up with a horrible frog cough, so I guess he wasn't feeling well, and wanted to be held. I accommodated his request, and enjoyed it.

Thanks for the comments, and emails offering to help with Em's picnic.


jocalyn said...

Has there been any talk of trying the Ketogenic Diet? It is considered a frontline treatment for hard to control epilepsy...including LG and Infantile Spasms. If a g-button is placed, it is extremely easy. The diet has its own risks, but mentally and physically Kendall made huge strides just getting off some of her meds. 1/3 of kids on the diet become seizure free, and 2/3 see major seizure improvement.

jocalyn said...

one more may want to contact Tara, Reagan's mom. She's very knowledgable of all seizure drugs, and I believe has tried Felbatol too.

A Girl Named Me said...

I'm sure going to make the best decision for Jude based on all of the information you have.

Do you have enough access to your neuro that you could place a call and discuss your concerns about the new med? Maybe there is something more conservative to try.

Thinking of you. xo

Candace said...

Jenn, I am sorry that you have to make these decisions. I know your pain. It often feels like no matter what we do, we can't win. Very frustrating.

Katy said...

I think Jocalyn has an excellent suggestion. I'm getting ready to do an interview for my blog with a mom who's doing the Keto diet with her daughter and she's completely seizure fee now. She had a condition called Sturge Webber, which is similar to IS and Lennox-Gestault.