One good thing

[susiestar]

Probably the one good thing we have gotten from the current (2nd) neuro is lamictal. I asked Jess if she thought it was helping. She is at 100 mg/day.

She says for the first time EVER her days are not really short and she doesn't have the feeling that she is "missing time". She has fought the missing time for a long time. It is a symptom of the absence seizures.

We estimate now that she has gained about 2 hours of awareness per day. I think she will get even more when we get the dose adjusted again.

I had not realized how much the keppra wasn't working. I am really resenting all the money we spent on keppra when it was not even a first line medication for this type of seizure. It is sort of like going to the doctor with an infection and getting imitrex. A good medication but NOT one that will treat the problem, so paying for it is a waste.

We spent almost 3 YEARS on keppra because the doctor told us that it and topomax are the ONLY options. She cannot tolerate the topomax. Finding out about more options makes me MAD. Esp if I think about all the sprains and strains of her ankles and knees because she falls. If she is walking when a seizure hits she falls. Period. So most of the time at least one knee or ankle is sore and tender. GRRR.

The neuro we first saw may be ranked as the "top neuro in the state for peds" according to several reviews but that is simply not true in our case.

Either that or he was just using her as a guinea pig for research. He has used her EEG for teaching purposes because he said it was unique and interesting.

Did you know that docs can use your test results for research and teaching, and even use blood and tissue samples for research WITHOUT your consent? Once a test is done you have no legal right to stop them from using your results or leftover fluids/tissue/samples for research.

Docs and labs make obscene amounts of money from this. ALL they have to do is not use your name. Period.

I think many docs fall into this temptation and use us as guinea pigs with-o telling us.

 

[smallworld]

I'm glad Jess is doing better on Lamictal. I have three kids who take this medication, and it really has done wonders for them. I hope she continues to make improvements.

I feel very strongly that parents need to research all the medication options and discuss the medications their children are taking with their children's doctors. If their children are not improving, they need to push for new options or a second opinion with a new professional.

I think you are confusing teaching and research. My father is a retired physician, and he frequently used slides from his procedures and interesting cases to teach medical students and fellows about his specialty.

On the other hand, I take my girls to an endocrinologist at the National Institutes of Health in Bethesda, Maryland, which obviously is a premier research facility in this country, and we (parent and children) needed to sign release forms that all information from their cases could be used for research. I think that is standard practice in this country.

 

[Josie]

I am glad she is getting some help from the Lamictal.

I agree with Smallworld in the need to do your own research. Personally, I don't trust any doctor unless I research what they recommend. I learned this the hard way after seeing a nationally recognized doctor who didn't handle our daughter's case as well as his reputation would predict.

Unfortunately, your Jess has an unusual illness and it is probably going to take some trial and error to figure out what works best. The trick is figuring out how long to try something without wasting time but still giving it a chance.

I hope you continue to see improvement on the Lamictal.

 

[DammitJanet]

When Cory had his shoulder and spine surgery at age 4, we were told that his case was going to be written up in a medical text book because it was so rare. They werent going to use his name of course, but he did have his surgery at a major teaching hospital and he surgery was done by a leading orthopedic surgeon who dealt with rare disorders. It didnt bother me one bit.

 

[GoingNorth]

The blood disorder husband died of was so rare that at the time of his diagnosis he was one of only 473 sufferers world-wide.

He never had any problems with his info being shared. In fact, because his disease basically involved his T-Cells mistakenly killing off his other stem cells, there are stem cell lines still growing in Israel and a couple of other places.

I think it's great that not only is research going on into MDS using his cells, but the research info can be applied to AIDS as well. An in, how to find chemicals, etc that could help STRENGTHEN t-cells in AIDS sufferers.

I think it's kind of cool. It makes me feel like husband still lives on in a very real way.

 

[Shari]

I'm glad its helping. Hope it continues.

While I agree with others that research and education is good, I think I understand you're frustration....you maybe wonder if you're doctor used Jess to "try something" instead of really trying to fix her problem with a more common or known solution - without asking you're ok to be that guinea pig. And that would light a fire in my tail, too.