Jordan's Topomax was increased again. I explained to the doctor how I am losing faith that the topomax is going to work and while she agreed with me, she wanted to try this increase and get a topomax level drawn. She explained how changing to a different medicine may help some of Jordans seizures but it would make the other type of seizures he is having worse.
We are all in agreement on the ketogenic diet however, the nutritionist who works with this diet is still on leave but another appointment was scheduled for October 10th to follow up & meet with the nutritionist and work towards starting it. When the diet is started Jordan will have to be admitted for a few days because it is such a drastic change in the type of food he is used to. This wait will also allows some time to monitor the latest topomax increase for effectiveness.
It was not the answers I wanted to hear. I was also told that when the seizures become as unmanageable as Jordan's has, they are very hard to get controlled, even with the diet it still may be difficult. In other words the prognosis of being able to control the seizures looks bleak.
The type of seizures he has is simple focal and spasm.
I am having a hard time accepting the fact that Jordan may have to live with these. There is the diet & vagus nerve stimulation. I was told these are not miracle cures & wont completely eliminate seizures or may not be any more effective, but has worked with kids with hard to control seizures.
There is hope but as I said I am having a hard time dealing with it right now. I want Jordan to be happy again. I want to see him participate in life & play. It took a while to deal with and accept the CP, then the GI issues & trach, now seizures. I get scared. When will he just be healthy and happy. There is always a hurdle for him. Never very much time to take a breath & catch up which he is able to do but something medical keeps getting in his way. I see his frustration & it's taking it's toll on him.
We are going to the fair today. Hopefully a hair cut too.
Pray for Jordan. I know God loves him.
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1 comment:
Dear Cathy,
I just happened upon your blog offering and your most recent post. You might be interested in investigating the following message forum of parents and support persons of younger children utilizing VNS Therapy for Epilepsy. The forum is moderated by Mary who is a well informed parent advocate and support person to her daughter.
The site is: ClubVNS
The link to the site is: http://health.groups.yahoo.com/group/ClubVNS/
My commentary, for your interest, can be found in a repository of information I’ve garnered over the past some 9 years relating to my experiences as a support person and proactive mental health advocate and activist especially as it relates to this very new and innovative treatment option for purposes of MDD (Major Depressive Disorder).
The site is: VNSdepression.com
The link is: http://www.vnsdepression.com
I am also a vocal advocate for patient and support person education as well as encouraging hope and persistence. I would also approach these illnesses from the least invasive therapies first and then if necessary progressing on to medications and/or other therapies to control and stabilize these illnesses into long-term remission.
Whatever your decision I wish wellness for Jordon and peace for your family.
Warmly,
Herb
VNSdepression.com
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