Saturday, April 4, 2009

A Long One....

Hey! Its late Sat evening. Steff is still in the hospital, Dave is there with her. We thought we were bringing her home this afternoon, but didn't. She wanted to stay there, she feels safe there. I stayed all day, but decided to come home for the night. That's my plan anyway. I will be there by 7 in the morning to wake her up by 9. Anyone that knows our kid ~ knows that she would easily sleep until noon> no problem! : ) Seriously though, she slept all day yesterday/evening and all day today. They have her on a lot of meds. Muscle relaxers seem to kick her little bottom. They knock her out. Today they discussed putting her on YET another pill. I had to bring it to their attention that prior to this, the girl only took a multi vitamin. How about we figure out what is wrong and fix it, instead of giving her all these meds to make her sleep. Yep> you know me, ready on the spot. Dave thinks they are doing this to keep her from having the episodes until the extra Keppra takes effect.(Yep! there's 2 more pills!) Either way, I really don't think more drugs is the answer. I think I made my point. She slept all day yesterday, but when she woke later in the evening, she had an episode that lasted almost an hour. A bad one, problems breathing and all. Today, again, she slept, then in the middle of a movie, Marley and Me(or whatever) she had one. One hour, and new positions. We tried to put a pill for seizures under her tongue. She kept it for a minute or 2, then spit it out. I'm assuming it tasted bad. LOL They then gave her one to chew as things mellowed out. She did. It seemed to relax her muscles. This Dr. is trying to find a way to make Steff feel safe again. If the pill will shorten or lighten the spell, it might help her feel safe. This Dr. also took more blood (her favorite!) to check for heavy toxic metals, and has scheduled a MRI for her lower back and neck. I'm glad she is there. It's just the Resident for the weekend, but she is getting very involved. I like her!
I was feeling like we were in a deeper and darker hole than we had been. Today, with help from a friend that does art, I realized I need to pull out of that hole and put positive energy back into this situation. Thank you lady. Sometimes it's difficult, esp when nothing is helping her. That said, I videotaped Steff having a couple of episodes. This will make it easier to explain to the new Doctors we plan to see. It's a difficult thing to explain and visualize. SO, that should help. She has an appt with the movement disorder specialist on the 17th. Dr. P is hoping the video makes him realize he needs to see her sooner, like today. Also, if we have to wait, we are going to jump into making an appointment with the Mayo Clinic in Minnesota. If we can see the MDS this week, we will do that first. So, we really hope to get things moving this week to get her better. Dr. P said Mayo does not take insurance, you have to pay then file it yourself. But, my sister says that's not true. We'll find out on Monday AM when we find out how long it takes to get in. Either way, we are going.
The Dr in KS that has stated it's the Gardasil doing damage to girls, should receive a phone call from Dr. P on Monday. I gave him his number, he said he would call and get all the information he could. He also stated that he has been researching and can't find any cases similar to Steff's. Most girls get sick and keep getting sicker. Steff has shown inprovement, then got sick again. Whatever.
This is a long one. I'm not finished yet. The hair analysis. I'll hit it lightly tonight. Her hair was sent to Analytical Research Labs. Here's the results I understand. ha They deal in ratios. Ideal ratio with Calcium & Potassium is 4.00, Steff's is 16.33. Ideal ratio with Sodium/Potassium is 2.5, hers is 23.33. You can see her numbers are way off. Her ratios in a nutshell: she has 2 in the high range, 2 in the ideal range, 1 in low and 1 in more than low. Those are called Significant mineral ratios. She is in Sympathetic Dominance, her potas is less than 4. The sympathetic system (SS) is catabolic, which means it tears down the body. Energy is used to prepare for defense, rather than for nourishment or for elimination of wastes. Makes sense to me, but there are about 15 pages to read to figure out how it all works together. Interesting to me. Most information was printed from Dr. Wilson's web site. if you want to read more> I know a few of you are into this kind of medicine and would def enjoy reading about it. So, there it is. If you aren't interested, you prob haven't read this far. : )
I'm off to pick up and prepare for our little girl to come back home tomorrow. Seriously doubt I can sleep. 1. I'm here alone AGH!!!! 2. I can't get her off my mind 3. I'm not used to sleeping by myself. 4. I'm still working out a plan for next week 5. It's windy and noisy outside. It might be a long night.
Just spoke with Dave, she's still sleeping soundly. This is good, rest is good.

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