Lauren is still up and down. She has seemed to stabilize a little these past few weeks. We are changing plans for her treatment. She was in the ER a couple of weeks ago after we started her on the topamax. It seemed to aggravate her seizures so we quickly weaned the topamax and started her on Vimpat a brand new drug that was recently FDA approved. That is what is probably giving us the stable period now, but not expecting that to last too long, and besides she is still having a lot of seizure activity. We went to Primary Childrens on Tuesday to meet with her Neurologists. I brought some research articles about using steroid treatment that I have been looking at for the past 8 months. Her doctor was very open to try, pretty much saying there is no wrong choice-all trial and error. The first type of steroid treatment we prefer to try is ACTH. The cost is over $100,000 for one treatment period. We don't know if insurance will cover it but they put in the request today. We should find out in the next week. I put some information about ACTH(a very strong steroid) below. All I know is that it is given by injection twice a day. They will teach us how to give the injections and depending on how Lauren responds, she would be on ACTH for a few months.

Also, when Lauren was in the hospital last December the doctor on call came in to her room in the middle of the day (which does not usually happen) and told us that she found something that may be wrong in one of her tests that had been done two years before when all this all started. It was a Neurotransmitter test and it appears that the person who read the results from Baylor University marked it normal when it may of been high. We don't know if it was a mistake or if the test is abnormal, so to retest Lauren they needed to do a lumbar puncture (spinal tap). The doctor did not want to do the test back in December because Lauren was not stable enough. The doctor told us to have our regular Neuro redo this test. When I brought it up at Lauren's follow-up appointment a few months later, the doctor dismissed iut as being nothing important. This past week I brought it up again with her new Neurologist that has taken over her care (the other doctor retired) and he looked up the notes for Lauren's inpatient stay last December. Our new doctor quickly had her lumbar puncture scheduled for the next day - which was Wed 8/4. The results will take 3-4 weeks to get back. I don't know what it means (the neurotransmitter stuff was all over my head), and the doctors didn't want to go in detail until the new results are back.

So, a lot of waiting, hoping and praying for the coming weeks!

Some info on ACTH:
Adrenocorticotropic hormone (ACTH), also known as 'corticotropin', is a polypeptide tropic hormone produced and secreted by the anterior pituitary gland. It is an important component of the hypothalamic-pituitary-adrenal axis and is often produced in response to biological stress (along with corticotropin-releasing hormone from the hypothalamus). Its principal effects are increased production and release of corticosteroids and, as its name suggests, cortisol from the adrenal cortex.

Andrenocorticotrophic hormone (ACTH) is a first-line treatment for infantile spasms and it can be used in other childhood epilepsies including Lennox-Gastaut syndrome, Landau-Kleffner syndrome, and MAE. ACTH is a peptide hormone produced in the anterior pituitary gland that is administered by injection.

ACTH therapy has caused fatalities and serious complications in the past so it is regarded as a high-risk treatment and used only when it is judged that the benefits (seizure control) outweigh the risks.

Side effects of of long-term or high dose steroid therapy
These side effects are common but are dose related,
* Stunted growth
* Weight gain (cushingoid effects such as puffy cheeks/moon face, tummy bulge)
* Increased appetite, food cravings
* High blood pressure
* Low potassium in the blood
* High blood sugar
* Loss of bone density
* Behavior disturbances (eg, temper outbursts, irritability)
* Sleep disturbances
* Lowered immunity -> lowered resistance to infections
* Excess bodily hair growth (eyebrows, limbs, etc)
* Stomach ulcers
* Constipation
* Fluid retention

All of these side effects are temporary and will go away once the steroid is stopped: growth should resume and catch up, excess body weight and hair will fall away, and the immune system will return to normal, etc. Some of these side effects may be prevented; calcium supplementation may assist bone density, an antacid such as Zantac may help prevent stomach ulcers, and increased fiber intake should alleviate constipation.

There are some dangerous risks associated with long-term or high dose steroid therapy. Some risks are more serious than others.

* Eye cataracts
* High blood pressure -> stroke
* Severe bone thinning -> osteoporosis
* Induced diabetes
* Kidney stones