Tuesday, July 29, 2008

Tuesday 7/29/08

CFS sure is multi-systemic. There's several things going on in her body, but the doctor did give some hope, though it may not be soon. I'll try to give you the short version of the doctor's visit.

This receipt shows a diagnosis of Adrenal Insufficiency, Chronic Fatigue Syndrome, Endocrine/Hormone Disorder, Fibromyositis, Hypothyroidism, Pituitary Insufficiency, Viral Infection, and Bacterial Infections. Her blood work from last time showed:

  • She was on the low end of normal in her Natural Killer Cells (part of the immune system that rejects tumors and cells infected by viruses.) .
  • Her white blood cell count was low. It was 4.3, and should be above 7. Her absolute lymphocytes were 1367 and should be above 2000.
  • She was slightly hypoglycemic with her hemoglobin level at 5.1.
  • Her cholesterol level was low, at a level of 123, where it should be around 150. He said it could be that her body isn't absorbing like it should.
  • Her Aldosterone level was 5, and should be at 20. This shows that she has OI (orthostatic hypotension or orthostatic intolerance), and why she is on the Florinef.
  • Her DHEA Sulfate level was low at 25, and should be closer to 200 for her age. This is a hormone, her memory hormone - that explains some things! It strengthens muscles, stimulates, immunity, increases energy, fights depression and anxiety, and enhances memory. He has now given her a supplement for this.
  • Her thyroid T4 level was low (1.0 and should be 1.5), her T3 level was low (316 and should be greater than 360) and Reverse T3 was off (should've been 1/3 of her Free T3 (which was 307) but was 210.
  • Her magnesium was low at 2.6 and should have been 4.0-6.4. This effects the muscles. We're to get some magnesium at GNC. I've been told this could also help her sleep better!
  • Her Free and Total Cortisol level was low, at 7 and should be 17. And her Free Cortisol level was low at .15 and should be 1.5. But he already had her started on this.
  • Her Pregnenolone was low at 30 when it should be 130-230. Again, this has to do with memory!
  • Her Vitamin B12 was low at 512 when it should be greater than 700. She's on multi-vitamins, but he talked about getting a B12 that goes under her tongue.
  • Otherwise, her Sed rate was good, mercury, lead, sodium, potassium, iron, and all the many other things they checked for seemed to be within range.

All these different things (thyroid, cholesterol, pregnenolone, DHEA, Cortisol, Progerterone, Aldosterone, Tertosterone, Estradol) all work together, so when one is not working, it messes something else up. Then starts the cycle. But she's already on the thyroid medicine, Cortisol, Florinef for the OI, and other things to boost her system etc., so he said "We're on the right track." He did say that it's not a quick fix. The minimum time frame to feel better would be six months, or it could be 2 years. He did say that with her being a child, she has a good chance of recovering. He also seemed to think that she'd be able to get off of all her pills except for her anti-virals at that point. (It's not something that ever goes away, but instead attaches to your DNA.)

We asked him about her diet. She likes chicken nuggets, and doesn't like fruits or many veggies. (Well, when talking about veggies, she told him that she likes potatoes! Ha!) He suggested a macrobiotic diet with whole foods when possible.

We talked about school, and what to do there. He said we'd just have to see what she's able to do, and suggested a lighter load this semester. He said for us to tell him whatever we needed in the school note (i.e. 1/2 day school, an extra set of textbooks for home, etc.) and he'd write it.

She got an IV suggested for energy, which contained ascorbic acid, magnesium chloride, calcium gluconate, B-complex, B12, D-Ribose, etc. We thought it would give her a boost. But after it started, her arm was hurting and she started shivering(chills), eyes burning, nauseas stomach (I thought she was going to throw up), and ended up with headache. She felt horrible. It was horrible. They said that was normal in some people, and she may feel bad tonight, but then she should feel better. The nurse said it would be worth it, but i don't think we want to do that again! We let her rest in their recliners for about 40 minutes (until they were closing) before we got in the car to head back home.

We did get to take a "lunch break" from the doctor's office to go to the Galleria Mall, which was just about 2 miles from the clinic. Jessica can push herself to go shopping! And we got a few school clothes and looked around until she was really tired!