I feel like today's appointment was a waste of time...
The results from Deacon's 2nd EEG weren't even in the system, and very few results were back from his bloodwork. The doctor asked us the exact same questions the neurologist did at the last appointment regarding milestones and pregnancy history. Most questions we had were answered with "it is so different with every child," "I really can't say," or "we'll need to see test results."
The epileptologist said that b/c we have seen a decrease in spasms on the Topamax, that he would like us to increase his dosage from 30 mg/day to 60 mg/day over the next two weeks and see us back in 2 months!?!
Am I crazy, or does this seem too far??
I was thinking he would say "see you back in 2 weeks" not 2 MONTHS! When I questioned the length of time he told me that basically his schedule is full, and that if it is cryptogenic, as long as we can get the spasms down to 1 every few days, that they usually go away on there own anyways... That contradicts everything I have read online! I thought the whole goal was to get the spasms to STOP COMPLETELY!?!
He said if the Topamax doesn't work that in 2 months we will consider ACTH.
I don't feel like I am hard to please or demanding anything more than what another parent in my shoes would, but I am at a loss...I feel like we have been rushed through every appointment, and that there is no sense of urgency by the doctors to eliminate the spasms. I don't even know where to go from here?? I am totally okay with increasing the dosage to see if it works, but what if it doesn't?? We have to sit around and wait 2 months to try something else??
1 year ago
5 comments:
Wow girl. That is so frustrating! I can't even imagine how you are feeling. Maybe its time to find another set of doctors at another hospital system? -Care
I think your feelings are what guide you Jackie and if you feel like this is wrong I totally agree with Mare. Second opinion! I have read and heard about so many people whose gut told them that something was off and they were right! You guys are doing the right thing! Keep staying strong!
If you are not pleased you have every right to seek another opinion. We took EMily to another state to get a 2nd opinion. It is very frustrating.
Do you have contact through e-mail or will he return phone calls (and not his nurse)? We have 2 neuros. One is local and the other (Dr. Chugani) specializes in IS. I do a lot of med changes through phone calls (local neuro) or e-mail (Dr. Chugani). If I call with questions, my local neuro will call me at the end of the day to discuss what our options are. So our local neuro will call in prescriptions for meds or fax in prescriptions for blood draws when needed. 2 months seems a long time to see if Topamax is going to work or not.
I'm going to tell you something, briefly, and I have only barely touched on the subject on my own blog.
Don't waste time.
If your instincts are telling you that this is wrong, then it is.
Get a second opinion, and get it as quickly as you possibly can. My son has all kinds of people who theorize about whether he has Autism, PDD, what his brain functions are based on what was cut-out because of the brain tumor that was in his head.
The one thing that everyone glosses over in their discussion of Bennett's current problems of development is this...he had Infantile Spasms for six months or so while we dicked around with waiting on this and waiting on that and we didn't have to.
It was these constant, daily seizures that, in my opinion, did the real damage to Bennett. THIS is the reality of his life more than ANYTHING else. And the burden of guilt I will always live with.
I should have acted sooner. I should not have simply accepted what I was told and accepted the runaround I was receiving from my local hospital.
But I did not push. I accepted that these people were pros...they knew what they were doing, even though everything I was reading indicated otherwise.
Waiting as long as I did to move Bennett elsewhere is the single greatest regret of my entire life.
Now, that's just my story and my feelings. You can take it for what it is. Anyone will support whatever you think is best for you. But I thought I would share that, for the first time, now, because it looks like I needed to.
All the best...
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