Lauren has had a very tough week since last Friday. She is currently at primary Children's hospital not doing to good. Last week we had to use 3 doses of diastat (emergency meds) and eventually they stopped working so yesterday we brought her in. We don't know what caused such a change, I have my theries ...
1. She ate almost a whole banana on the Thursday before she lost control of her seizure. The first 24 hours nothing happened, so i emailed her Drs at Johns Hopkins at they told me to start weaning the diet. I was very happy! but was going to wait to start the wean in a few weeks.
2. We also were increasing her Depakote at that time. As strange as it sounds sometimes medicine makes her worse.
3. We had also been doing a slow ween of another drug over the past 2 months. Maybe it was actually doing something?
4. This is just another one of her bad cycles she goes into?!

So as you can see we have no Idea. Right now we are just working on getting her out of Non-convulsive status. Last night we loaded her with IV Depakote to get her blood levels up. It didn't do much good. Right now we are trying IVIG therapy. It is a long shot but at this point your options are pretty limited. From what I learned so far IVIG is..

Intravenous immune globulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment in three major categories:

• Immune deficiencies such as X-linked agammaglobulinemia, hypogammaglobulinemia (primary immune deficiencies), and acquired compromised immunity conditions (secondary immune deficiencies) featuring low antibody levels.
• Inflammatory and autoimmune diseases.
• Acute infections.

As you can see Lauren does not fit into any of those categories, just something to try based on some people success with it. Here is more info I found.....

Immunoglobulin therapy was first reported to be effective in epilepsy in 1977, when children with epilepsy were given intramuscular IgG to treat recurrent upper respiratory tract infections.93 Improvements in seizure frequency and behavior were noted. Subsequently, 16 children with Lennox-Gastaut syndrome were treated with intravenous IgG (IVIG), and significant improvement was seen in 8 of them.94 Since that time, several additional clinical trials have been published with similar results, reporting significant improvement in about half of cases.93

There is emerging clinical evidence that IVIG may be of value in several refractory seizure conditions. The details regarding which patients and at what point of the illness it should be used need to be investigated further.

They are going to do one infusion today and another one tomorrow. We just have to wait and see. Even if this does not work I am happy that we have a chance to try this therapy. Not every doctor would give this option, the doctor on call this weekend (which we have never met) is young (which worried me a bit) but I like the fact that he will try something out of the norm. It will be something else I can cross of my list. I will post how she does.

We appreciate everyone prayers on her behalf, Thank you!
Tami
-Can this count as our Christmas card? I will even post some pictures next time!