Send In Reinforcements

I know it has been a while since I last wrote in this blog. Not only have I been busy shooting weddings, studying for my new career as a medical transcriptionist and working, I needed to take a much needed break from doctors and Tylyn’s condition.

Shortly after I last wrote our insurance company denied her to seek treatment in Denver. Not only was I angry about the doctor’s office reaction (“We will help you with the appeal” when they were the one’s that didn’t complete the paperwork in the first place) I was also frustrated with how helpless I felt as a parent.

We decided to collectively, as a family, to pursue a gluten free lifestyle and Tylyn would try to stay away from milk products, with the exception of hard cheeses as approved by my new best friend, Digestive Health By Elaine Glottschall. It is diet targeting relief for Crohn’s, Celiac’s, Chronic Diarrhea and IBS.

Interestingly enough in the back of the book it lists dairy products that are okay- like cheddar, which Ty has no problem with. Two that she can’t tolerate that are on the “no-no” list? Cream Cheese and Mozz. Hmmm- guess that’s why we had them on the “bad” list before we started eating like this. .

Anyway, we are only on week four and sometimes she slips; after all she is a busy seventeen year old who works. She is quickly realizing good food=good tummy.

In addition, we only eat organic food now. Also, BPA free, no cans, bleached paper towels or unnecessary plastic.

So why is this worth a blog?

Well an odd thing happened to me last week. After eating gluten free for about two weeks I noticed a change.  I’m not talking about taste. Organic just TASTES better. The milk is like when I was a kid, tomato soup brings back memories as well, and even crackers seem fresh- yes- even without the preservatives!

No, what I’m talking about is a reaction I had upon eating products with yeast. I mean yogurt and bread after abstaining. Not only did I develop a itchy rash all over my skin with hives on my legs, back and around my mouth, I also had slight swelling of the lips and the second time a slight asthma attack.

No mind you I use an inhaler only when needed, personally about 6-12 times a year, mostly early spring and fall. NEVER after eating.

The other event worth noting that after a battle, Tylyn received a flu vaccine. Being fair I got one also, although previously I was against it. In light of Ty getting it 5 times last year and the 5th landing her in the hospital, I made it a requirement this year to keep her shaky digestive system a reprieve.

No mind you I have not had an immunization in a while. I have no known allergic to eggs (which is the warning) nor does Tylyn.

I experienced itching, pretty intense but mild compared to what I had been suffering two days prior after ingesting yeast. My inoculation site swelled mildly, growing slightly hard and red- about the size of a quarter. That lasted about 3 days.

Tylyn however had a large welt. It was bright red about a little smaller size of a woman’s palm and hard. Itching for her was unbearable. I downplayed it to hide my concern. Too boot she has slept non stop.

Even now, 5 days later it is still irritated. After talking to friends, family, colleagues and coworkers, it is not normal.

A call to the (nice) allergist confirmed it was allergic reaction. Her primary agreed. A note was added to her chart and next time she will receive the nasal version.

Sigh.

Will this ever stop?

I only write this now as I want to let others know about the concern. No IgE response for serum or SPT, but clearly a reaction.

I guess my advocate days are not over; I have lost this battle as my daughter did not want to get the shot in the first place and the war is far from over.

And the duck goes QUACK

Today was the first time I have cried in a while about Tylyn.

I realize that doctors are human and their errors are sometimes honest mistakes, even if those mistakes cost people their lives. Tylyn’s condition is not in a critical sense of life threatening as a heart attack or cancer might be, but the complete lack of compassion and acute care is disheartening.

Perhaps it is because of the road blocks her current doctors have put up. Inept at best I can not even stand to neither hear their voice nor their name.

It started with a call to Dr. Nightmare Allergist office to get Ty’s blood results. Normal. But wait- no Eosinophil count as there was no Diff. To make a long story short- why am I concerned with her count? The icing on the cake was when she relayed the doctor’s message verbatim about my referral inquiry that went along these lines:

Patient’s mother has been informed numerous times before that a referral would not be done until the patient has been reevaluated by our facility also will need to discuss with GI doctor about referral.

In addition he kindly added he was coordinating her care through Colorado with facilities and staff that he personally knew.

And might I add here- who gives a shit?

Perhaps it was teh nurse's icy tone after I said that I didn’t want to talk to Dr. Nightmare anymore. Perhaps she became annoyed about my concern of Ty’s Eosinophil levels remaining elevated for 6 months which can put strain on her heart and other organs.  

Perhaps my irritation continued with the inability to see the new GI doctor sooner. Though Ty’s stools are being questioned, it is considered a second opinion which does not allow prioritizing.

Makes you wonder how many people die waiting to get a second opinion.

Lastly, when I found out the real culprit for ordering the CBC without the diff, (although the hospital lab staff assured us the req did mean differential), would be the PCP, they regretfully informed me most likely the insurance wouldn’t cover a retest. This was due to her having two normal blood results back to back.

Remember the first one they didn’t do right either.

Morons would be a strong understatement for Dr. Nightmare, Dr. G and her PCP.

Sadness does not cover my emotion. If I had to describe it perfectly it would be a mixture of: despair, hopelessness and fatigue.

I look forward to closing my business and letting Daniel take over. How can anyone have the strength to interact with anyone after dealing with this on a weekly and sometimes daily basis?

I’m trying to stay positive but in the midst of the roof leaking because of the ex-husband, the crappy contractors that won’t show up or return a call (and when they do they tell me September) and my flipping car needing service constantly, I have little patience for doing teh grunt work of my daughter's health care.

It seems this is common though. A client yesterday told Dan her daughter was diagnosed with Fibromyalgia but that was only after fighting with doctors for four years while they had her do physical therapy. Her daughter was still angry about the doctor's ignorance. She is the same age as Tylyn.

I am currently taking a class for a new medical degree and am sickened by the description of the healthcare reform that promises a better system for the patient. One that allows easier referrals and electronic healthcare records that can be accessed instantly.

Our current healthcare system is fill with doctors such as these that are overworked, understaffed who have atrocious amounts of student loans and insurance costs and no time to provide adequate care that is outside what we can all find on google. What does this result in? Demanding to see a patient so they can write a referral. Perhaps it is their egotistical, self centeredness that makes the ability to see past their own opinion unattainable.

I’m not sure if he wants me to pay some more money one more time. My daughter has been to his office twice since he promised her a miracle cure. I’ve asked since June 1^st for a referral. I’m beginning to grow leery of NJH & CH if Dr. Nightmare represents the doctor’s there.

I think I need to do more research before a let another “duck” set back my daughter’s progess. But then again, currently we have no where to go but up.