OK, I guess I need to apologize for not posting for a while – time has slipped away a bit. And, I have been in a bit of a funk, to be honest with you. Between multiple tests coming back frustratingly ‘normal’ and the drama going on in the rest of my life right now, I just feel grumpy and tired and blah, with a bit of ‘grrrrr’ as well.
[Regarding the Pity Party aspect of this post: Living with a child’s chronic illness provides more than enough excitement and angst and drama. It would be nice if life could just be smooth sailing, so the medical stuff could be your focus. But, alas, life has a way of bopping along over all the normal bumps and potholes regardless of the fact that it just adds more stress to your existing mountains of stress.
In the pothole category currently is the craptastic other stuff from people who were thought to be trustworthy and that is a recipe, at least for me, for sitting around stewing about them instead of focusing on the medical stuff I should be focusing on. Or writing my book, which was going really, really well until I got sidetracked by the drama. Meh. Now I am getting annoyed all over again.
Apparently, I can’t ‘compartmentalize’ very well… Or maybe, it is more that I just get stuck in the most difficult compartment and can’t move between compartments with any ease. Anyway, I am purposely trying to pull myself out of that muck, so am forcing myself to write this post. And, if I am honest, this time of year is hard for me – we have been dealing with EDS as a known entity for 3 years now, officially diagnosed for a little more than 2. It was in May of 2010 that Em got so very ill and went downhill so quickly and I figured out what it was we were dealing with. It is a lot of memories of a rather inauspicious anniversary on top of all the other crap that has been dumped on me right now. So, forgive my pity party, if you will!]
Here is an update on what is coming up and what has been going on:
- Em has an appointment at the Syncope Clinic at Cincinnati tomorrow. I am feeling pretty apprehensive about it. After her tilt table test almost 2 years ago, we knew there was a pretty clear indication that there were autonomic issues. But, we were also doing the trial of Diamox and Zyrtec and Zantac at that time and had fought hard to get a script for Diamox. (Ironically, while she fainted in 8 minutes during the test which amazed the nurses, she was actually doing BETTER than before going on the Diamox and mast cell meds a short time before.) So, at the time, we knew that there was a real possibility that going to Cardiology, which we were referred to, would possibly push us in a direction we didn’t want to go. It bears mentioning that we had come off some really bad doctor experiences shortly before this and were highly distrustful of doctors and where we were referred had already proved that they had little EDS knowledge. So, it is going on 2 years later and I am still suspicious and distrustful and, while Em has largely gotten used to the autonomic stuff, it is still a major issue. It would be really nice to have proper treatment of the dysautonomia…so, we go tomorrow and hope for the best. (I have had one mom share their really positive experiences with the doctor at this clinic, so I am cautiously optimistic.)
- I heard from the GI doctor about Em’s gastric emptying study. Although the written report indicated significant (?) delay mid way through the test, she had normal emptying by the 4 hour mark; the GI doctor views that as a normal result. So, in other words, all normal. I suppose it was too much to ask for a straightforward diagnosis. In the good news category, this doctor is willing to treat her symptoms. In the eh-not-so-good news category, he wants to treat her with a medication called Buspar and I am less than thrilled. I just don’t feel that he has a handle on all of the meds she is currently on (maybe he does and I am being unnecessarily suspicious) and I am pretty concerned with the possibility of triggering serotonin syndrome. So, we left it that we could discuss it at our next appointment in July. Not really happy about any of that…
- I also heard from the GI doctor, who ordered the blood work, about Em’s thyroid results. Again, normal. Except that I had a copy of the actual lab results in front of me days before the doctor’s office called. Em’s TSH was 4.06; the range the lab uses is .35 – 4.1, so Em missed being outside the range by 4 hundredths of a point. Then there is the fact that this range is (apparently) very outdated, although there is a great deal of controversy about it. The more current cut off is 3.00 – by that standard, Em has clear thyroid issues. The even more current thought is anything above 2 indicates a thyroid problem and by that standard Em has serious issues. So, when the doctor said ‘her thyroid is normal!’, I am thinking ‘hmmm, not so much’. Obviously, this doc is a GI doc and has no business reading these results, so I need to get to someone who will read them right and address the issues. I have thought we need a referral to an endochrinologist for a long time, but no one (who matters) agrees. Not really happy about that at all…
- Had a follow up with the pain doctor – actually we saw his new nurse practitioner, who we liked well enough. We have an order for PT and we start water therapy on Thursday – that is a good thing. Em’s neuropathic pain has been increasing and we talked about that during the visit with the pain nurse. Unfortunately, Em is maxed out on the neurontin so we can’t increase her dose. The nurse checked on Lyrica and, apparently, Lyrica is not listed for pediatric use, so they won’t let Em try it. Bleh. Not really happy about that. (Sensing a pattern here?)
I think that brings it all up-to-date, for whatever it is worth. I will post after our appointment tomorrow, if I am not sitting alone in a dark room pouting and playing Angry Birds and Fruit Ninja to get my anger out…