Dallas and The Doctor

We had a doctor's appointment scheduled for Monday in Dallas, so we added a few days and made it a mini-vacation. We even managed a day at Six Flags.

The day we left our house for the 5-1/2 hour drive to Dallas, Jessica wasn't feeling well - really tired and her throat hurt - so I wasn't sure how much she could handle. She slept in the car. And the next day, was the best day weather-wise (least chance of rain) to attempt Six Flags, so we went. She was tired, so we took breaks. There were a few times when she said she was ready to leave, but she held out - especially for Matthew. We were in line for one of the boat rides and Jessica said she needed to sit down, so we got out of line and went to an inside country music show. (Jessica likes country music.) She sat while Matthew played carnival games. Etc. There was a free concert that evening with Jessie McCartney, and Matthew wanted to go see it, so Jessica held out till then. We listened to a few songs, and then headed for the park exit. Steve pointed out a dark cloud that he thought looked like a wall cloud. We, along with everyone else, were leaving the park at the same time - trying to beat what looked like a bad storm. I panicked and tried to get everyone to run to the car, but Jessica didn't have anything left in her. So, we walked - at Jessica's pace. Luckily, we made it to the car just before the bottom fell out. It was a rough drive back to the hotel though.

Monday we went to Jessica's doctor's appointment. He dropped her Valtrex anti-viral dosage down from 2 pills a day to 1 pill a day. He told us that we could quit 2 supplements - Anti-viral and Arteminisin - saying they had done the work we needed them to do. There were also 2 more supplements that he said we could step down the dosage of and get off one at a time, and see how she does. (Both of these are for energy production.) He did increase her thyroid medicine a little bit. And he gave us a prescription for Provigil to help with her focusing problem. We haven't filled that prescription yet, because we're still researching. He took blood, and we'll find out those results at our next appointment, which isn't until November. Overall, it seemed like a good appointment.

And Jessica got to sleep on the ride back home.

Doctor's Appointment

We met with Jessica's doctor over the phone tonight. I'll try to give the shortened version.

Regarding her B-12 shots, Jessica said she didn't think they were helping, so he said she didn't have to get the shot, but to find another form of B-12. There is a non-prescription B-12 patch or a form that dissolves under your tongue.

We went over her labwork that was done a few weeks ago:

• She’s not anemic. Her kidney function is normal. Salts, proteins, and liver are all normal.
• Her Pregnenolone was up and was good.
• It looks like her thyroid is on the right track now.
• Her CBC white count was still a little low but better.
• Her Cortisol was low, and something he wanted to work on, so he's increasing her Cortisol to 3 a day instead of 2 a day. Cortisol helps stress management, the immune system, allergies, pain & stiffness, and helps stabilize blood sugars. Blood sugar is still low and Cortisol levels are still low. Increasing her Cortisol should help the blood sugar issue, as well as the appetite.
• Her cholesterol is still low, which most people would think is good, but it can be too low. Things to consider - Are you absorbing your food or are you eating enough? If you don’t eat enough then you don’t get enough nutrition. Jessica says she’s not eating much because she gets full too early. The doctor encouraged her to eat more. She may not be getting enough nutrients to make all the chemicals her body needs to run on. All your hormones are made from cholesterol, so if you have low cholesterol then you may not have enough to make your hormones with. The body can get in trouble if it doesn’t have enough stuff to run on.
• Her DHEA was a little on the low side but at her age, he doesn't want to mess with it. It's raised since the June labwork, so we are making progress.
• Aldosterone (re: OI) was just a tiny bit better, but her dizziness is better, so he's leaving that alone.

He said we could back down on her anti-viral dosage, which I'm taking as a good sign!

Regarding her headaches on the right side of her head, he is going to send a prescription for something to take for the pain. He mentioned that headaches can be caused by a hormone fluctuation. If the headaches end up being a long-term problem, then we can look at a preventative.

He also said it appears that we're doing the right things. Depending on how she’s doing, the next appointment will be in 2-3 months.

So, we keep on keeping on, and keep hoping for further improvement.

Wednesday 12/3/08

Jessica woke up at 9:30a.m. still sleepy and with a sore throat. But as the day went on, she did ok.

We had our scheduled telephone appointment with the Dallas CFS doctor. This appointment evidently was just to go over things, check in, review and see how things were progressing. It seems that we're doing all the right things at this point. We just have to keep doing what we're doing "for a while." Dr. S said we did a good thing by removing her tonsils even though there was a setback (because of the anesthesia and surgery). Tonsils are lymph nodes. The Epstein-Barr Virus (EBV) lives in lymph nodes, so the tonsillectomy "lowered her load," by removing a big portion of it and taking them out of her body. Dr. S discussed her thyroid medication. They can tell how the thyroid is doing by vital signs. If the body temperature, pulse and blood pressure are low, that means they may need to bump up the dose. (Jessica's body temperature has been consistently low the last 11 months.) She’s on a low dose of thyroid medication right now, not even up to the therapeutic dose yet, and so he is going to bump it up some. Her energy is not quite where we’d like to see it, and this should help, along with possibly helping with her focus/attention difficulties. He is going to send us a requisition for some lab work to check what was off or low on the lab results that were taken this summer. And our next appointment isn't for another 2 to 3 months. (That's good!)

Maybe her energy isn't quite where we'd like to see it or where it was, but she has been able to do more and we have seen improvement.

Monday 9/8/08

Jessica was so-so today. She said she was ok this morning, but a headache started at noon. She had two quizzes and a test to take in History, and she said she made some "stupid mistakes" on the quizzes that she wouldn't have otherwise made if she had felt better.

We had our telephone appointment with the Dallas doctor today. He answered some questions, and then went over the lab results. The lab results still showed mono, showed the Epstein Barr Virus (which he's treating), and a couple of other things that I wasn't clear on. Every time we talk to him or see him, he adds a new medication or supplement and tells us to be patient. He said we're just getting started. Please pray for our patience! He is giving her an antibiotic and something to help her sleep. She does need to sleep so she'll feel better, and she's not sleeping well at all. I've tried melatonin and Tylenol PM too, and can't tell that either really help much. As far as school, he said that a lot of his patients can't even go to school at all until later in the treatment process, so she's doing good to be able to go. So, he said to keep doing what we're doing. I guess it's getting harder to be patient and a little frustrating...

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!

Friday 6/20/08

We saw Dr. S at the Fibromyalgia & Fatigue Center in Dallas yesterday. This doctor seems to be good and very knowledgeable. They suggest that we bring a tape recorder to the visits as he talks a lot and there is a lot of information. (That also shows us that they're not worried about liability and there's nothing off in left field that they're doing.) I talked to people in the waiting room and got good feedback from these other patients on the clinic and their results.

The doctor spent at least an hour with us. He said Jessica does have Chronic Fatigue Syndrome (CFS) which he says is usually several things going on. The root cause of Jessica's is evidently the Epstein-Barr Virus (EBV) and mono. Our receipt has a diagnosis of CFS, Adrenal Insufficiency, Hypothyroidism, and Viral Infection (EBV). He could tell that she has a thyroid deficiency from her eyebrows, hair loss, hands, feet, and swelling of her tongue. They took 24 viles of blood for testing which should be back in 3 weeks. They do have IV's that they do there to give the patient a boost, but they are optional, and we haven't done that yet. He has prescribed some prescriptions, including an antiviral, along with their vitamin supplements. He said no exercise, and even when she did start feeling better to be careful and pace herself.

We're supposed to go back in a month, and then in another month, and hopefully either telephone appointments or longer between visits after that. There is no cure but it can be controlled. He doesnt know if she will be ok for school by September but hopes so. They usually tell their patients it takes 4 to 8 months.

Finally some answers, and someone that knows... We are excited and hopeful for Jessica's recovery!