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.

Medicating for Cold Urticaria

No one medicine that you or a child can take on a daily basis will prevent you from breaking out to cold once you have CU.  As a matter of fact, researchers have found the best outcomes come when mixing two or more (H1 and H2) histamine blockers.  They have also found a marked improvement in reactions when Singulair is combined with at least two antihistamines.  In English, H1 blockers are your everyday antihistamine allergy meds.  H2 blockers are antacids. 

In most studies, they have found that Cyproheptadine (Periactin), Hydroxizine (Atarax) and Montelukast (Singulair) provide the best control on the majority of patients; however, doctors never start out using these meds due to their side effects.  For children, doctors will start with over the counter meds and preferably with non-sedating meds like Claritin and Allegra.  For individuals with more complex reactions and/or are resistant to these meds, doctors start working their way to more powerful meds and those that are sedating. 

Any given combination that works for one person is not guaranteed for another person.  If you don't find what works for you keep working with your doctor to try other combinations.  As a child grows, they will out grow their dosing, so if a med stops working, talk to the doctor and find out if doses can be increased or determine if your child needs a new med.

Also, when a medication causes drowsiness, a doctor will usually suggest you or your child taking it before bed time; however, some will experience the drowsiness at the time of waking up or early in the morning as the medication is wearing off.  You may find moving the time the med is taken to earlier in the day (2 hours earlier) so that the wearing off of the med occurs during the night, the child will feel much better in the morning.

In our experience, no medication and no combination of medications prevents all reactions; however, the difference in what they do prevent is the difference between being functional and non-functional.  Preventing reactions is a multi-tiered approach involving medications, preventative actions in where you go and how you dress and knowing when to just say, "no, I can't do it."

First Step in Walking the Walk

>> Previous Post >>TLC is now able to visit a clinic just over a hundred miles away that is specific to Dysautonomia.  As we do this, we are cutting ties with the neurologist at Children's.  We hope that there are not any changes to her existing meds as they are all working just fine.  However, we do want to have a doctor to consult with locally that knows and understands what is going on with her nervous system issues.  We have heard from some that they will only be able to work with the Dysautonomia and will not be able to help with the Cold / Heat Urticaria and the Ehlers Danlos.  However, this will be a big improvement over a doctor that does not know anything about any of them and can only try to treat the symptoms.>>>>

We had completed the first leg in our journey of Walking the Walk.  A week ago Monday, we visited the Dysautonomia Clinic.  Our journey began at 5:00 a.m. leaving home with a destination that is only an hour and a half away, but due to much traffic, we arrived three hours later.  One minute prior to our daughter's appointment, now knowing where to go in the building and toting bags of medical records, pillows and a change of clothes to exercise in.  We were the first ones there, but we made it.

We all went into the nurses office.  She asked many questions, some no's, but many yes'.  As her parents, we returned to the waiting room. Our daughter was wisked away for autonomic testing.  Her dad and I remained in the waiting room until the testing was completed.  Even though she is fifteen, I have always been with her at her appointments, this was one of the few rare cases I was not.  It left me a little nervous.

The nurse came and guided me to the doctor's office, my daughter sitting uncomfortably in a gown directly in front of the doctor.  In a slow, calm manner, he began asking some of the same questions and going over the test results all at the same time.  He was in his 70's a little feeble looking, he kept asking some of the same questions over.  I allowed my daughter to answer all the questions that she could with out me interjecting.  However, there were times the brain fog crept in.  It was difficult for her, she was either confused or forgetful.  I answered when I could.  I soon realized, he was testing her brain fog.

On entering of the tests, her heart rate was 126 and during exercise quickly rose to 176.  Based on the testing, we found that her current heart medication was not working.  Despite his first thoughts to increase the dosage, based on other factors, he decided to change her medication.  He calmly explained the change and that most with DYS respond well to the Beta Blocker.  He also suggested two other medications.  One she had taken before which would both help her sleep and also prevent the jerks.  The second would balance the chemicals in the brain and also help her sleep better thus preventing her hypersomnia.

He wants us to follow up with him and keep him aware of how she is doing.  He knows the meds may have to be adjusted and is willing and ready at any given time.  He tells us that the Seratonin will take two or three weeks to really work its way into her system before an improvement would be noticed.

We are now one week out from the appointment.  The first full night of meds was like a miracle being performed.  TLC slept the entire night through and woke up at 7:00 a.m. without an alarm or being told to wake up.  This has continued every morning since.  Her heart rate remains about 80 bpm, blood pressure is stable and no Jerks.  She did not know what to do to fill all this extra time she is awake.  Not just up and moving around, but truly AWAKE.  The first day she talked nearly non-stop.  That has stopped, but she is once again like a "normal" person.

Where we once feared that she would not be able to drive or go to college and pursue her dreams, the possibilities are now endless for her.

Despite this appointment being just about Dysautonomia, there is some hope that this will improve her Cold Urticaria in that it will reduce her breaking out and/or raise her cold tolerance threshold.  We give so little, yet ask so much.

Thank you, Lord, for your many blessings.  We love you and remain faithful during the difficult times and we choose the same during the good times.  May we continue to honor you in all we do!

A Beauty Quickly Fading

This journey is not ours alone.  It is shared.

A couple years ago, we met a beautiful young lady.  She was at the State Fair in a booth showing/advertising her well trained dog.  She was part of a program that trained dogs for therapy, her standard poodle was her therapy dog.  This young girl had E. B.,Epidermolysis Bullosa.   Her arms and legs were wrapped for protection.  Her dog was there for her support.  But she didn't just take, she gave back.  How courageous she was to be seen at the fair looking "different" than everyone else, standing out in the crowd.  She had spunk and energy that did not waiver.  She suffered a great deal of pain that no one could take from her.  Despite this, she showed courage, strength and a giving nature.  This is where beauty comes from, it comes from how we handle our situations in life.  We can be courageous or we can be cowards.  Which ever path we choose, it will shine through on the outside.

I am so glad that even though I did not get a chance to know her well, I was able to share the journey with such a beautiful young lady.  Her life was cut short.  May God bless her and her family.

 Has your life beaten you down? Are you a beauty that has faded? Or, do you choose to beat your circumstances down?  Do you refuse to fade, but to stand out in spite of all else?

Walking the Walk - Again!

We are starting our journey of visiting doctors once again, walking the walk.  When every we take this path along our journey, it feels like we are walking on a tight rope over a raging gorge.

TLC is now able to visit a clinic just over a hundred miles away that is specific to Dysautonomia.  As we do this, we are cutting ties with the neurologist at Children's.  We hope that there are not any changes to her existing meds as they are all working just fine.  However, we do want to have a doctor to consult with locally that knows and understands what is going on with her nervous system issues.  We have heard from some that they will only be able to work with the Dysautonomia and will not be able to help with the Cold / Heat Urticaria and the Ehlers Danlos.  However, this will be a big improvement over a doctor that does not know anything about any of them and can only try to treat the symptoms.

We have also made an appointment with the Geneticist to get more help with the Ehlers Danlos.  TLC is now having problems with nearly every joint subluxating with every movement.  Currently her neck, shoulders, wrists, fingers, vertebrae, hips, knees and ankles are all affected.  She is still finding new tricks that she can do.  She needs braces that will help prevent the movement of her joints from sliding around.

TLC now has a new symptom and we will be going to see an eye specialist today to rule out all the "bad" causes.  It appears to be Retinal Migraines.  A lot of people I have talked to have had trouble with them in both their eyes.  TLC only has them in one eye right now.  Because it is in only one eye, it is commonly triggered by some bad sources.  We are praying that it is not and like so many others will eventually improve and go away.

Doctors are almost always difficult to work with; some get it, but most don't.  Some already have the answers with total disregard for what is actually going on.  Some are just plain crazy.  Rare is the doctor that listens, that researches, that truly wants to research and make things better, even when the answers in their books don't work.

This is our journey and we are walking the walk, once again!

Enjoying the Simple Things Amidst the Chaos

We have had so much going on in the last few days.  We just wanted to share with you another step along our journey of dealing with Dysautonomia, Cold Urticaria and Ehlers Danlos.

People with Chronic Illnesses such as these or all don't get to go out much and participate in what all life has to offer.  Despite this, we have found that life can be just as enjoyable at home, with family and enjoying what we can one thing/event at a time.

Don't get me wrong, we do make attempts to go out. When we do, we are always prepared to leave if the activity/event becomes overwhelming.

Recently, we were invited to a suite view of our local baseball team.  We were able to sit inside and block out the noise when it was too loud outside from the concert prior to the game. And praise God, the weather was absolutely perfect.  As the suite became too cold, and the concert transitioned into a game of America's favorite past-time, we were able to sit on the balcony and take it all in.  Then when it came time for fireworks, we were able to go inside and avoid hearing all the loud booms which would surely have sent my daughter's nervous system into overdrive.  We made it...through the whole evening of activity and enjoyed it all.

Last night we had the opportunity to go to the Capital Sounds Band's summer concert.  We attempted to sit all the way in the back of the theater, behind the speakers, but despite really good sound control, it was just too loud.  The myoclonic jerks started only mildly, but we had to go somewhere quieter or leave.  On our way out, we found a sitting room just outside the women's restroom and sat in there to enjoy the music.  Unfortunately, it smelled like a bathroom so we left at intermission.  We enjoyed what we could and we were content as it was more than what we can usually participate in.

Later in the night there was an attempted home invasion.  Fortunately, the men were scared off and there was no harm, other than us being wakened at 1:00 a.m. and the fear driving my daughter's nerves once again shot into orbit.  For the second time in one day, she experienced what we so un-lovingly refer to as the Jerks; Myoclonic Jerks that is.

Borrowed from Wikipedia

"Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. They may occur infrequently or many times each minute. Most often, myoclonus is one of several signs in a wide variety of nervous system disorders such as multiple sclerosis, Parkinson's disease, Alzheimer's disease, subacute sclerosing panencephalitis and Creutzfeldt-Jakob disease (CJD), serotonin toxicity, some cases of Huntington's disease, some forms of epilepsy, and occasionally in intracranial hypotension. Some researchers indicate that jerks persistently may even cause early tremors."

My description:
Jerks are like giant hiccups.  They can affect just the head, arm, leg or they can affect the whole body at once.  TLC has had it affect the whole body.  But yesterday, it was just in her neck.  It is terrifying and can be very painful especially when the jerks are hard and sudden.  For my daughter, they can be triggered by an overloaded sensory function such as intense fear, pain anywhere in her body, and for her being cold.

We enjoy life and are content with the little we can be a part of.  Check out the post previous to this one and you will see why.  Our God is the master healer and though healing may not occur this side of Glory, it will come and last for an eternity.  May you be blessed and enjoy the simple things in life.