"Suffering the Slings and Arrows of Outrageous Fortune"

Catching up…

Been a while since I posted – and there have been a few important developments to mention.

I have been totally out of it for a week and a half due to a nasty kidney stone. Apparently that 7 1/2 mm stone that I have been fighting for 5 months decided to rear its ugly little head and needed an attitude adjustment. I ended up in the ER, had a shockwave procedure (where they use ultrasound to break up the stone) and then had a stent placed. Both procedures were minor surgical procedures and I was under general anaethesia  for both. Spent a few days in the hospital and have been pretty well out of it since I came home. Not fun at all. The only good things about this adventure is that my mom was able to come and stay with the kids (and me) and that Em has improved so much with the mast cell treatment that I didn’t have to worry much about her. I am slowly recovering and hopefully this ordeal will be over soon.

So, on to the updates…

First, the mast cell treatment (zyrtec and zantac) has been more successful that I ever dreamed. Em is eating without pain and is up and around through out the day. She went to our homeschool Co-op classes yesterday without her wheelchair (!!!) and I attribute that to the mast cell treatment.

Second, and also very important, the amitriptyline has finally started working well. We had to bump up her dose since we only had a few 10 mgs and a new script of 25 mgs. The 45 mgs seemed to be working pretty well. In fact, she has been falling asleep before midnight and waking up, on her own, by 11 am. She finally told me that, on this dose, she was falling asleep quickly, sleeping well and waking up rested. RESTED!!! – she hasn’t had restful sleep for months and least and maybe not for years. We are bumping up the dose to 50 mg, just for simplicity in dosing and if she tolerates it well, we will stick with it. The pain relief aspect from the ami is still in question – but she may be getting a little benefit from it. Hard to tell since she has been way overdoing while I have been ill.

Third, an update on the diamox saga. My husband had to take Em to her appointment with the pain doc at Cinci without me. I didn’t really think this doc would agree to prescribe the diamox but I thought he would at least listen. He sort of listened , a bit dismissively, and refused to help. That was expected but still discouraging. He wants to wait 2 weeks to see how she tolerates the 50 mgs of ami before he prescribes nuerotin for her pain. That is frustrating but I understand. All in all, it wasn’t a great visit and I really wish I could have been there. Probably wouldn’t have changed anything but I would have been able to explain the mast cell and Driscoll theories perhaps better than my husband. Although, I think he did a great job – most likely nothing would have changed even if I was there. There were a number of concerning things about that appointment but maybe I will write a separate post to detail them all. Would take too much space here… Suffice it to say, we are getting more and more annoyed with doctors in general!

We still have our plan d for getting diamox – an appointment on Tuesday with the local neurologist for a second opinion. Praying hard that it is a good visit and we are listened to. I still believe that if I can get a doc to listen to me for 5 minutes with an open mind, we will leave with a script for diamox in hand.

So, a lot has happened in the past couple weeks and we are still trying to move forward. Can’t wait to feel better so I can get on with taking care of Em and focus on her health instead of mine!

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Comments on: "Catching up…" (2)

  1. Glad to hear you’re both doing better! I have a couple of questions, though. What exactly is the Zyrtec/Zantac for, and what is the dose you’re trying? And did you try Cymbalta before the amitrip? My son is trying it for pain and to help with sleep, and the pain is a little better, but it’s not helping with the sleep/fatigue problems that sound just like Em’s.
    I did read the Driscoll stuff, but I’m still not clear on who needs the Z-Z. Our prob. is pain and fatigue, with a little hassle from a delayed gastric emptying, not total gastroparesis. And not really any POTS type stuff.
    Hope things continue to improve.

    • Hi! I will try to answer your questions… No, we haven’t tried Cymbalta, just the ami. It has taken awhile but we finally are seeing results. I know the dose is important because it did nothing at the lower doses. We just have to keep an eye on her and watch for depression, suicidal thoughts and weight gain. If she tolerates this dose for a couple weeks without problems, I think the next step is Lyrica. Her nervous system is really out of wack and that seems to be best option to settle it down. I know Cymbalta is good for pain but I think each person is so individual in their reaction. At least there are options!

      Regarding zyrtec and zantac: They are treating the mast cell disorder I assume my daughter has. (She has many of the symptoms and she is responding to treatment – that seems to be the way it is being diagnosed and treated currently.) Mast cells are allergy cells and, depending on the specific type of disorder, they can cause all kinds of problems.

      In Mastocytosis, the mast cells live too long and you end up with too many. In mast cell activation disorder, you don’t necessarily have too many, but the ones you have misbehave (this is the type I believe Em has). These cells can hide all over the body – skin, GI tract, liver, kidneys, brain, etc – and release serious chemicals that cause problems. The symptoms are diverse so it can be hard to figure it out. Anyway, to intervene you can take H1 and H2 histamine blockers – zyrtec and zantac. Right now, Em is taking 10 mgs of zyrtec and 150 mgs of zantac in the morning and 75 mgs at night. Take a look at the symptom list I am including – that should give you an idea if mast cell is an issue for your son. A good website is: http://tmsforac.ipower.com/dev/archives/179 Another resource is http://mastocytosis.ca/ – mastocytosis patient experience letter. This may or may not have anything to do with your son, but if it does, the otc treatment is so easy to start – and I know it has helped my daughter immensely.Unfortunately, finding a mast cell expert may be even harder than finding an EDS expert! Hope this answers your question – feel free to ask more if I wasn’t clear enough!
      Abdominal pain
      Anaphylaxis
      Blood pressure changes & shock
      Bone pain (mild to severe/debilitating)
      Chest pain
      Cognitive difficulties/brain fog
      Degenerative disc disease
      Diarrhea
      Dizziness/vertigo/lightheadedness
      Faintness
      Fatigue
      Flushing
      Gastroesophageal reflux
      Hematological abnormalities
      Hives & other rashes
      Inflammation of the esophagus
      Intestinal cramping and bloating
      Itching, with and without rashes
      Irritable bowel
      Liver, spleen and other organ involvement
      Malabsorption
      Migraine headaches
      Muscle pain
      Nausea
      Osteoporosis/Osteopenia
      Peripheral neuropathy and paresthesias
      Rapid heart rate
      Vomiting

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