My Favorite Websites / Blogs

Websites:

Cold Urticaria

www.coldallergy.org

http://www.jaoa.org/content/101/5_suppl/1S.full.pdf 

Facebook:

Kidz 4 CU
Cold Urticaria Parents
Cold Induced Urticaria
Cold Urticaria- Yep you can actually be allergic to the cold.
I really am allergic to cold!

Blogs:

http://www.pilgrimagegal.com/search?updated-min=2013-01-01T00:00:00-05:00&updated-max=2014-01-01T00:00:00-05:00&max-results=36

Ciprodex - Fluoroquinolones

http://floxiehope.com/2013/07/28/ciprodex-poison-marketed-to-children/

Articles:

 Cold Urticaria

http://www.washingtonpost.com/lifestyle/on-parenting/how-to-parent-while-having-a-chronic-disease/2013/11/06/fae3176a-463d-11e3-b6f8-3782ff6cb769_story_1.html 
http://www.today.com/id/41466518/#.UnKUWVOojAc
http://abcnews.go.com/blogs/health/2012/11/15/kids-allergic-to-the-cold-literally/
http://www.dailymail.co.uk/health/article-2113825/Abbie-Tully-12-allergic-cold-deadly-allergic-reaction-slightest-chill.html
http://usatoday30.usatoday.com/news/health/medical/health/medical/coldflu/story/2012-01-23/Allergic-to-cold-Its-a-real-condition-experts-say/52759906/1

http://www.nbcnews.com/health/allergic-cold-gene-detectives-find-new-clues-1C6435965

Advocacy

 http://www.parentcenterhub.org/

Walking the Walk Part II

With much anxiety, we returned to our journey of seeing doctors attempting to get answers. To our amazement, the first leg of our journey went very smoothly. We found a local specialist for our daughter's Dysautonomia. He changed her meds which has given her a new lease on life. She is no longer chained to excessive sleepiness and excruciating pain when standing from the blood pooling. The jerks are very minimal. They are now being expressed as aggressive hiccups, but not as bad as before.

We took the second leg in our journey attempting to get a diagnosis for the joint issues.  To our amazement, the doctor had diagnosed our daughter two years ago with Ehlers Danlos.  Sadly we were never informed. I was so exhausted at the time from bad doctors visits that I never even asked for a copy of her records. Regardless, having this answer right off the bat was such a relief. We were able to get a script for physical therapy from a physical therapist who understands what you can and cannot do with someone with this condition.  We are currently trying to find someone locally, if not, we will just travel back north at least monthly for her to learn what she needs to do.

Do you know what a relief it is to have answers? It is amazing. We may not like the answers, but we now know how to work with our daughter to give her the support she needs. We now know that there are answers out there. I know that I will forever take my husband on appointments with us, he is now our rabbit's foot. Every time he is with us, we get answers.