Friday, June 27, 2008

Friday 6/27/08

Today was so-so. I had to go to work today, and Jessica was up and seemed ok when I left. But she ended up with a headache later, not feeling well, and tired. My parents brought by lunch, and Matthew helped take care of her the rest of the day.

Jessica took her temperature a couple times today and it was 96.4. It seems that low body temperature goes along with CFS and/or thyroid problems?

Thursday, June 26, 2008

Thursday 6/26/08

Today was a good day. I had to go in to work, but my parents came over before I left for work and stayed all day. My mom said it was like daylight and dark from the way Jessica felt (and looked) yesterday. When I got home, it was so good to see Jessica upright, out of bed, and smiling! :)

Wednesday, June 25, 2008

Wednesday 6/25/08

Today has been awful! It started out with a scare - with Jessica feeling like her throat was closing up. It's evidently not closing up, but hurting really bad! She's feeling so bad today that I haven't pushed her to take her pills, except just the anti-virals and started the Florinef. The vitamins and supplements were not worth stressing over today. She's completely worn out! So very weak! She's stayed in bed all day.

An intern from the church youth group called Jessica today to invite her to join some of the girls at her house tomorrow. I heard Jessica telling the girl about her illness, the fact that it will not go away, and that she "can hardly do anything right now."

I emailed the Dallas doctor today about the horrible herx reaction. He said "Although it feels bad, it indicates the severity of the problem we are treating, and the crucial need to treat it as it can get worse. There is no danger with the Herxheimer reaction; it is just very unpleasant, much like side effects from chemo therapy." We've got to stick this out...

Tuesday, June 24, 2008

Tuesday 6/24/08

Jessica was so bad yesterday that I slept in her room with her last night. But today seems to be better. She's up, had a shower, and dressed! But still tired.

Oh, and she has been able to take her pills/capsules today! I think she decided the powder inside the capsules tasted too bad not to try.

Matthew is sick. He woke me up at 2a.m. with a fever, sore throat, etc. He has 101.4 fever today. The doctor did a strep throat swab today that turned out negative. But with our circumstances, the doctor seems to be afraid to take any chances...

Added at 7:30p.m.: By late afternoon, Jessica was completely worn out, practically having to roll onto the floor from her bed just to get up, breathing heavy, having trouble getting enough air. She doesn't feel well. They both don't feel well.

I've noticed that Jessica is getting dizzy more frequently when she stands up. She's noticed it too. We're going to start the Florinef tomorrow that is supposed to help with that.

Monday, June 23, 2008

Monday 6/23/08

Today has been awful! Jessica is not feeling well at all today. I don't know if this is a normal CFS crash or if this is a reaction to the medication. We were told that there probably would be a "herx reaction" to the anti-virals which is basically a massive die-off of organisms in the body. A herx reaction occurs when an anti-viral or antibiotic kills off a lot of virus (or bacteria) all at once, and it moves out of the cells and into the bloodstream, causing a temporary worsening. This is actually supposed to be a sign that the anti-viral is working for her. From what I've read, it looks like it could last 3-5 days or up to a week. I believe that's what Jessica is going through, but it's rough! Her throat hurts, she's tired, her eyes are burning, etc. Like a horrible flu. She feels rotten!

Oh, and if anyone has any recommendations on how to teach her to take pills, I'd love to hear it! We struggled with that one this morning!

Sunday, June 22, 2008

Sunday 6/22/08

Jessica had a good day today until the evening. We met some friends for lunch, and then the kids and I went to see Mia and groom her. Matthew and I picked out her feet (because it takes a little effort), and Jessica brushed and trimmed her mane. No riding, and we didn't stay long.

On the way home, she said she was a little tired. But by 7:00p.m., I noticed her breathing heavy and I could see that her legs were wobbly weak. I got her to lay down. Her throat hurts, she's really tired, and just feels yucky! When I put her to bed, I could tell she was really struggling. I'm going to stay home with her tomorrow.

Friday, June 20, 2008

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!

Monday, June 16, 2008

Monday 6/16/08

Today wasn't a bad day. I stayed home with the kids. (I had a migraine anyway.) Jessica was some tired, but doing ok for the most part.

We made an appointment for this Thursday with the Fibro & Fatigue Center doctor in Texas. Jessica has been ready to go there for a while! I hope this is the start of something good for her!

Sunday, June 15, 2008

Sunday 6/15/08

Jessica hasn't felt very good today at all. She obviously did too much yesterday. Sore throat, headache, but mainly really tired. She took a 2-1/2 hour nap this afternoon. I stayed home with her today, and we had my dad come over here for us to wish him a Happy Father's Day instead of going to their house as planned.

Jessica said she's "been laying around the house for 6 months, and she's tired of it." She's tired of being sick. We're trying to decide if we should just go to Texas to the Fibro & Fatigue Center.

Added at 10:30pm: Jessica texted me from her bed saying she "doesn't feel good." Her throat really hurts, her head hurts, and she's having leg cramps (which I guess is just normal growing pains). I had already given her an ibuprofen before she went to bed, so besides rubbing her leg, and loving on her, I didn't know what else to do. So, that's what I did - I layed with her for a while and loved on her.

Saturday, June 14, 2008

Saturday 6/14/08

Jessica wasn't feeling good this morning. We had talked about going to the lake today and taking the dogs. The weather cleared up from the rain the night before, and Jessica perked up at the thought of still being able to go. So at noon, we packed up and went.

We had a picnic lunch. Steve and Matthew fished. And Jessica sat in the shade, and let the dogs wade through the water. We left about 4:30 and the kids were wanting to go to the swimming hole to swim, but, after the dogs had drug Jessica around a while, I figured she'd done enough!

So, we went home and watched a movie.

Friday, June 13, 2008

Friday 6/13/08

Today was a pretty good day. Jessica seemed to do ok. She stayed home and stayed around the house for the most part. Until the evening... It's Steve's birthday, so we went out to dinner with my parents.

We got a call from Dr. A tonight. She had been looking up about the anti-virals, and has decided that she cannot prescribe them. She mentioned doing it for a couple of weeks treatment, but then said the dosage recommended for CFS is longer, and she didn't want to do that. She said she could try to find someone that would. She wants Jessica well too. She also said that the lying/sitting/standing blood pressure test she did wasn't enough for diagnosis of the OI, that it needed to be done on a tilt table and she didn't know who did that. She's going to check the Children's Hospital EBV test results on Monday to see if they tested for the actual virus or only the antibody for it. Then she'll get back with us and see where we go from there.

We're at a loss right now as to what to do...

Thursday, June 12, 2008

Thursday 6/12/08

Today was our follow-up appointment with Dr. A. The doctor came in excited, saying that the saliva test showed some things wrong and there were some things she could fix.

Jessica's cortisol level was just below the minimum range, with a daily total of 22 when the total daily level should be 23-42. Her DHEA was depressed and in zone 7 ("this zone represents a fatigue or suppression of the adrenals with overt deficits in either or both cortisol and DHEA production.") or showing Adrenal Fatigue. Dr. A's recommendation is to give Jessica small doses of the cortisol and DHEA (BHRT) for 3 months to give her adrenal glands time to rest and recuperate. Then after the 3 months, her body should be able to make it on her own.

The SIgA, which as Dr. A explained it is the nose/throat area's immune system, showed that she had a depressed level also. And Dr. A said we would boost that with vitamins.

Progesterone level was good, kidney & liver functions were good, no allergies to gluten/wheat, milk, soy, eggs, etc.

She also tested her flat/sitting/standing blood pressure. Her laying still blood pressure was 110/70, sitting bp was 112/68, and standing was 90/64. This sudden drop in blood pressure when you stand up from a sitting position is called orthostatic hypotension or orthostatic intolerance. She was checking this because this is a condition which results from Chronic Fatigue Syndrome (CFS) and affects almost everyone who has it. Dr. A said that there shouldn't be more than a 15 degree drop, and Jessica's dropped 22, so the doctor is checking into this.

We have heard of dramatic results from using anti-virals especially if within the first year with CFS, so we're going to start treatment with the anti-virals before starting the BHRT. (We don't want to start both at the same time, so we can tell what is working for her.) Dr. A is looking up what anti-viral, dosage amounts, and length of treatment, and will call in a couple of days with the prescription.

Dr. A said we were making her read [and research] a lot, and she was going to charge us extra for reading! Actually she said she enjoyed learning, and she's been good to want to help us. We've found there aren't many (especially in Arkansas) that know much about this. As Dr. A said today also, it was good to see something in writing to actually show what's going on with her. And it's exciting to see that we have treatment options to start now!

Saturday, June 7, 2008

Saturday 6/7/08

Today was an ok day for the most part. We went fishing this morning - and Jessica and I each caught a catfish and Matthew caught 2 bream! We had to leave before we could eat our picnic because Jessica was getting run down and had a headache. But later in the day, she seemed better and was doing ok.

The rest of the day, we've just stayed around the house and watched a movie tonight (National Treasure Book of Secrets - good movie!).

Friday, June 6, 2008

Friday 6/6/08

Today wasn't a good day.

The kids had talked about going to see a movie today. We were watching a movie on tv this morning, and when it was over Jessica said she didn't want to go anywhere. She evidently wasn't feeling up to it (seemed tired and had a slight headache). But after going to bed last night saying she didn't like just hanging around the house all the time, I encouraged and took us to the movies (Kung Fu Panda - funny movie).

By late afternoon, she was really dragging with a sore throat and a little bit of a headache and really tired.

Thursday, June 5, 2008

Thursday 6/5/08

Jessica went to bed tonight sad and saying that "it's not fair" that she's missing out on the youth group beach trip (that starts this weekend) and that all she does is hang around the house. (When the offer of going out is there, she usually doesn't want to (doesn't want to be crashed in bed the next day) or doesn't feel up to it.) I wish there was something we could do to make it up to her. She called me on the intercom at 10:30 tonight wanting an ibuprofen because her throat hurt and she wasn't sleeping.

Otherwise, today hasn't been a bad day. She had a little bit of a headache and was some tired. We drove around looking at houses, and she went in to Wal-Mart with us - for the first time in over 5 months!

I have noticed that Jessica is forgetting a lot, even in the middle of a conversation. It doesn't seem to bother her since she doesn't know that she's doing it.

Wednesday, June 4, 2008

Wednesday 6/4/08

Today has been a pretty good day. I went to work, and my parents came over to be with Jessica. Jessica and my mom went shopping at Kohls for a short time. Jessica did pretty well. She's some tired, but doing ok.

Tuesday, June 3, 2008

Tuesday 6/3/08

Today wasn't a very good day.

I went to work this morning for a few hours. When I heard from Jessica after she was awake, she said she was ok but had a headache. She didn't take anything for it until I got home at noon. After lunch, though she didn't want to, I had her go lay down. She slept for 2 hours. She woke up still tired and her head hurting. Her throat has been hurting some today too.

Before the homebound teacher got here, I quizzed her on her civics. But she obviously wasn't feeling well, couldn't think straight, couldn't remember what she studied today, and was getting frustrated. Today was the last day, so we didn't have another option but to take the test today. (The dance/p.e. teacher sprung a final test on her today too after telling me and the homebound teacher both that there wouldn't be one.) Hopefully Jessica did well. But it's over! We made it through 9th grade! And it is a relief for this semester to be finished.

Dr. A's office called today. The results of the saliva test have come back, and the doctor wants to see Jessica again. We have an appointment for next Thursday. Hopefully we'll get treatment started to get her feeling better.

Monday, June 2, 2008

Monday 6/2/08

Today has been a pretty good day. Jessica wanted to get out of the house, but I had a migraine. We did finally drive over to see Mia and the new horse at the stables that was adopted from the humane society. (Skinny horse!) We just drove over to visit from the fence for a few short minutes. So, that was our outing. As I told someone from the church that called to check on Jessica today, when she asked if Jessica gets out - she has to! Or have cabin fever!

The homebound teacher dropped off the last study guide today, so Jessica should take her civics final tomorrow and finish everything! It's been a struggle to get there, but we're almost there!

We mainly just hung around the house today. Jessica's been a little tired with a little bit of a headache, but otherwise pretty good.

Sunday, June 1, 2008

Sunday 6/1/08

Today was a pretty good day. Jessica just stayed around the house and didn't do much - sewed some, watched tv/movies, etc. She was a little tired, but ok.