When leaving the appointment, the allergist refused to let my son be carried 20 feet to the car, instead he kept him in the warm office and instructed me to bring the car up as close to the door as I could, he didn't care if I ran over landscaping, he didn't care if I blocked access to other patients, he didn't care that it was warm enough that my son should be "o.k" in the weather. He wasn't allowing him to be outside at all.
Now 1.5 years later our son is doing things I never thought possible. He's played in snow for hours this year without a reaction, he's played in temperatures he wasn't supposed to be in, his attendance at school is up, we went from reactions everyday to maybe 5 this year and most importantly he hasn't had a single anaphylactic reaction!
Now I'm sure if your reading this far, your asking how we did it. And to be honest with you I don't have a definitive answer but I have my suspicions narrowed down to 2 things.
1. I am the first to admit that CU is exclusive to the person. From temp thresholds, to triggers, and severity of reactions it all depends on how it affects you or your loved one. So maybe as unpredictable as CU is and how it can change in severity at any time, our sons severity levels changed...just because. It does happen. But I am leaning more to option 2.
2. A while back, in the post "Thryoid Medications To Treat Cold Urticaria??" I talked about medical studies and a doctor's opinion about using thyroid medication to treat chronic urticaria even when there was no thyroid problem present, how our son's labs had come back slightly off, and I expected he would be put on medication. We did our follow up appointment with the thyroid doctor and she gave me 2 choices. 1. I could have his labs redrawn in 6 months to see if it was a fluke or 2. I could start him on thyroid meds immediately and see how it goes. I think you know which option I chose.
When making this decision I was completely honest with our thyroid doctor. I explained what the allergist had said, the studies that I had read, that with his labs off and winter fast approaching, only with her approval, I wanted to get him on thyroid medication immediately. She agreed whole heartedly and said it was worth a shot. So he was started on 30 mcg of Armour thyroid. Then and only then did we start seeing the immense changes in our son.
So why do I believe in option 2 more? As I explained in the last blog post on this subject, our daughter was the first to go into anaphylaxis from air conditioning. A few months later she was put on thyroid medications and has never gone into anaphylaxis since and her severity decreased to the point where some days I wonder if she has it anymore.
Seeing the changes in her was what drove me to get our son to our thyroid doctor, and I can't overlook how it changed for both of our kids. 2 children, both with CU, both went into anaphylaxis, one of whom the doctor said would not survive (remember he did not respond to any treatment or medications at all), both put on thyroid meds and BOTH improved greatly.
Trust me when I say I am not advocating anyone to go out and get a hold of thyroid medications somehow and put their child on it if a doctor won't try it. Doing so can cause problems, levels in the blood must be watched closely to make sure the dose is adequate. What I am advocating is to find a doctor who will listen to you and may be open to trying this, and to remember what I preached on this subject regarding what labs need to be drawn and when!
I also want you to never give up hope. When CU hits, it's scary and frustrating to say the least. When we know limitations, triggers, thresholds, etc. we can deal with it and it becomes our normal, although it can break our hearts at times. Just as things have turned around for our son, things may turn around for you too. Maybe it's severity levels decreasing, finding a medication that works, or possibly outgrowing it. Don't dwell on how things "used" to be, but never give up hope either.
P.S, I'm not sure why, but my link capability to make it all pretty and cleaned up is not working right now. If you are interested in reading Thyroid Medications To Treat Cold Urticaria, just copy this link in your browser or if it will let you click, do that! Sorry!