The life of Tara Kay...

My daughter, Tara, was born on February 3, 2007. Within 12 hours of being born she broke out in a rash. She was treated with antibiotics but no one new what was wrong. Her white blood count was very elevated and has been since she was born. Around 3 months of age her rash (hives) looked even worse...I brought her to our pediatrician who referred her to an allergist. Tara was seen, but they couldn't do the 'poke' test until she was 6 months old. Once she was 6 months, they did the test and she tested positive to being allergic to coconut, dogs/cats and dustmites. We did everything we could...changed formulas, bought dustmite covers for her bed, took away all her stuffed animals, put her on medication, etc, etc. The medication didn't work. We started thinking we were going to have to switch daycares (our daycare owns 2 dogs). I stayed home with Tara for about a week and a half. That didn't help reduce her rash at all. The allergist was frustrated. She sent Tara to a Rheaumatologist thinking that the high inflammation in her body was juvenile arthritis. We went to the Rheaumatologist in Grand Rapids and he looked at Tara, bent all of her joints, over bent a lot of them and she didn't squirm or show any discomfort. He referred us to a dermatologist. We went to a local dermatologist in Muskegon and he diagnosed her with chronic hives. He told us there would be no use in a skin biopsy because her hives change places every other day. We were losing hope...everyone was starting to tell us that this would be something she would outgrow...that was encouraging.

Tara's pediatrician was still not happy about the high inflammation (SED) rate inside Tara's little body...said it was not normal and not healthy for her to live life like this (even though she seems to be a content little kiddo)... He started thinking that her immune system was fighting itself....so he decided to send us to a pediatric immunologist. We found one at the Children's Hospital of Michigan that our insurance would cover. We made our way over to Detroit and met with Dr. Secord who pretty much said that we 'stumped' her...not the answer I was hoping for. She did a bunch of lab work (whats new Tara's been poked and prodded since she was born). Later on in the week she called me and said that she would like us to come back to meet with her and the rheaumatologist, Dr. Adams. So we went back to Detroit, met with both of them and you guessed it...more pokes and more lab work. They also sent us to get a biopsy of Tara's skin and to see a pediatric opthamologist (which would see if some veins in her eyes were inflammed).

I know this story is long, but now we are up to October 3, 2008. A day that I was driving me and some of my friends to a conference in Grand Rapids, MI. I get a call from Dr. Adams. Said he had a diagnosis for Tara. Apparently he did some tests on genes in her body. She tested positive for Muckle-Wells Syndrome. This is part of the CAPS disease. There are 3 tiers to the disease...very serious (NOMID), serious (Muckle-Wells Syndrome) and less serious (Famialial Cold?). He told me that the reactions were her rash, high inflammation in her body, sore joints, fevers and she would lose her hearing by the time she was adolescent. What a shock to my system...all these doctors were starting to say to me that this could be something she could outgrow and now I learn that she has a disease that she will live with the rest of her life...it wouldn't get any better or worse (except her hearing).

Luckily, there is a medication for this disease, something new called Anakinra. They are not sure of the long-term affects. The bad part...it is an injection daily for the rest of her life.

We had to do a couple of things before getting her started on treatment. We had to get a TB test and get some accelerated vaccinations (once she is on this medication she is not able to get them anymore). We also had to get a baseline hearing test done. Tara passed her test overall, however her left ear had negative pressure (she was just getting over an ear infection) and the machine said that ear failed.

Steve, Tara and I just went back to Detroit this past Thursday to meet with Dr. Adams (the one that diagnosed Tara). There was a miscommunication between him and my pediatrician, though...he thought that we had already started the injections, but we haven't. He referred us to the National Institute of Health (or at least gave us the number to it- its a self-referral program) and gave us a enrollment form for Children's Special Healthcare. This medication is not covered by my insurance (as far as I know..I have a call into them, but it wasn't listed on their website) and the cost is about $10,000 per year.

On the way home from our appointment I called the NIH and left a message for Karyl Barons to call me. Dr. Adams from Detroit had contacted her and told her about Tara over email messages. Later on Thursday afternoon, Dr. Barons called me and is very interested in meeting Tara, especially before she starts the Anakinra. So we are hoping to get in soon (especially before February when I'm due). She told me that Tara would be available for a study. She would have to come in every 6 months to do this. She is thinking this appoinment would be 2-3 days long. One part of the appointment would be sedating Tara and doing an MRI of her bones in her ear, along with giving her another hearing test. Dr. Barons told me that a nurse would call me Friday (yesterday) or Monday...hopefully she will call me Monday so we can get the ball rolling, I haven't heard from her yet.

So thats where we are...I may have got a couple things out of order or may have missed some things. What is important is that I have a happy little girl with a very rare disease that I'm hoping we can treat soon so she can live happily ever after like the little princess she deserves to be. We love Tara very much and thank God for her!