Monday, May 24, 2010

Road We Didn't Expect to Travel

We went to Stanford again last week. It was an "interesting" trip in more ways that I had ever anticipated. While we were there for my medical care, it was our 4-year-old son who caused the most excitement when he had a seizure, seemed to stop breathing and prompted a 911 call and ambulance ride from our hotel. Seeing my son blue and unresponsive is an image that haunts my dreams by night. Since returning home, we have already seen his pediatrician and are currently awaiting an appointment with a neurologist. This is the fist seizure we have witnessed, but think we only "caught" it because he was sharing a bed with his siblings and they noticed his distress and called us for help. Based on the after-effects of this experience, in hindsight we believe he may have had prior seizures at night over the past few months that we didn't witness.

I gave 10 vials of blood for the Stanford Medical Center CFS research program and another 7 tubes to my own doctor. (I'll give another 8 or so to WPI when they come by for a blood draw tonight.) The primary positive outcome of my months of IVIG infusions seems to be the dramatic reduction of my fevers. I realized just how out of the ordinary I've been when Dr. M. did a double take and turned around with the word, "Seriously?" when he realized I've spent years on end running 100-101 degree temperatures on at least a weekly basis (often several times per week). To have this trend broken (now it's maybe once or twice a month) is significant in his mind. On the negative side he explained that I could remain reactive (hives, breathing issues, etc.) to the IG for up to 7 months, but that these reactions should gradually resolve month over month.

I have started a new therapy on am planning to take the antiviral drug Acyclovir for the next year. At this point I have not yet found a doctor or researcher ready to start me on an antiRETOviral drug, but the Acyclovir seems to be a step in the right direction. I've been cautioned that I must self-regulate and "keep my world small" this year even if I start feeling noticeably better, to avoid relapse.

Honestly I'm quite exhausted right now. I've been in bed solidly since Friday, both sleeping extended hours and weak, weary and in much pain even when I'm awake. The emotional drain of our son's emergency, compounded with the physical strain travel always inflicts on my body, and I'm afraid it's going to take me a while to get my feet back under me. I've mentally written this blog post several times, but just haven't had the energy to actually type it. Even before our trip it was taking me 20 minutes to compose a 3-sentence email, so as you can imagine, typing anything coherent is even more challenging now (and I'm giving my spell checking a real workout!). Hopefully the Acyclovir will help offset some of the impact of this "crash" and I'm so thankful for my sweet husband, the help of extended family and the support of wonderful friends in the meantime.


Sue Jackson said...

Oh, my goodness, what a week you've had! I completely understand how scary it must have been with your son. My oldest is allergic to bee stings and when he got stung and had his first anaphylactic reaction, I was terrified to see him all swollen up and unable to breathe. I hope things work out for your son and you get some answers soon.

It's no wonder you're worn out - not just the stress but giving so much blood! People with CFS don't have enough to begin with - having blood drawn can cause some bad crashes - be sure to have lots and lots and lots of salt and fluids to replenish!

Hope your week improves...


Jenni / Jennifer Saake a.k.a. InfertilityMom said...

Thanks Sue. :) I'm so sorry to hear of your son's bee allergy - must be terrifying! {hug}

While I know blood draws are terribly hard on many, thankfully I'm in the rare group of CFS folks who rarely seems to be impacted by blood draws. My record in one sitting was 39 vials and that really didn't phase me.

I do intake a lot of fluids always, and am making extra sure of that as I start the Acyclovir. I've been drawn to salted pumkin seeds this week, so it seems my body knew what it needed there without me even giving it any thought.

Thanks for the tips to consider! Just got a call from WPI that they need to postpone tonight's planned draw for a week or more, so if any of this is a reaction to last week's draws, that gives me a little more time to recover as well. :)

Anonymous said...

Praying. I can't imagine how scary!!

Lori said...

Bless your heart. I don't have anything to say other than you are amazing in all that you endure, I'm SO THANKFUL your son is ok, and I am praying, praying, praying for you!