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.

Itchy and Scratchy

Yesterday Tylyn received her food patches. I had taken a trip to Wegmans the day before and spent my lunch raiding the bulk food aisle. Luckily for us they also have an extensive natural food section which led me to hitting a jackpot with freeze dried fruits. In the bulk section the fruits are loaded with Red40 and sodium benzoate (a preservative) that many people are allergic to. For my samples I needed to be as scientific as possible.

Armed with baggies and a mortar and pestle, I went to work grinding up my foods.

Grinding up foods on my lunch hour

For fruits I had chosen:

Apples

Bananas

Strawberries

Blackberries

Raspberries

Blueberries

Not knowing what exactly the Allergist’s office had I also chose:

Peanuts

Oats

Sesame seeds

Almonds

Sunflower seeds

Needles to say I had my work cut out for me but soon I had our own little collection of packets.



Food Samples for APT testing



On Tuesday I sent her off to the doctor’s with Dan and our samples. In addition the allergy nurse added:

Wheat Flour

Rice Flour

Milk Powder

Cornmeal

Soy

Egg White

Also due to my request for seafood they also did SPT for: Crab, Trout, Salmon, Lobster, Clam, Tuna, Shrimp, Perch, and Oyster. Surprise, surprise- negative.

When Tylyn came home I found out why they consider the test so technique dependent. Instead of the small chambers I posted as little example in my previous blog, Tylyn’s were about the size of a dime. The aluminum vessels were not contained in an adherent tape either, by 4pm hers was already coming undone after an afternoon of lounging on the couch.

To my dismay I saw ground sesame seeds that had fallen and were now swimming around inside the loose tape. We immediately bought some breathable athletic tape and replaced the curling paper tape.

After a trip to the school to hear about Tylyn next adventure in Disney next spring with the band and chorus, we returned home. It was in this time that Tylyn made me aware that three particular spots were bothering her quite bad. One was the second from the top on her left shoulder blade, the other one directly beneath it. When I asked her to clarify bothering she told me the third one down made her want to scratch her skin off. A quick peel back of the tape to see the writing through the chamber tape revealed banana and its partner in crime blackberry. It makes me wonder if my theory about the smoothies was right.

This morning she let me know that another couple of spots were bothering her, including an additional one on the top of her right shoulder blade. We gave up our inspection when she decided the tape removing the fine hairs on her back wasn’t worth it. I guess we will just find out tomorrow.

On a brighter note, I talked to NJH and the Allergist Tylyn will be seeing will be contacting Dr. Nightmare to ensure he is on board with Tylyn coming to Colorado. They also are a little perplexed why a doctor would deny a referral and say he was treating her when there is no course of treatment in place. I guess if someone wants to swing names around, they better be prepared for people to call their bluff.

Until next time, keep scratching as I know Tylyn is waiting to use her Zyrtec again. 

Loading up my arsenal...

I am a full advocate for representing oneself. In this statement I lump in educating yourself whether it is looking into buying a car or house, taking out a loan, changing careers or your health.

What I am not cool with is playing secretary to businesses that are involved in my child’s acute care or being the most active in her treatment.

So, one can assume I am going somewhere with this.

A phone call to the insurance company today revealed no movement on Dr. Nightmare’s end or the GI doctor. Calling the GI doctor revealed they have no records in their file of the faxes I have sent over. I am to check in tomorrow and see if the secretary managed to locate them.

Unfortunately I had to give her an update; Tylyn has not been feeling well. It seems the Pentasa has provided no relief. In fact yesterday was very bad for her, seven BM which were the consistency of sand or ‘cornmeal’ in her words. She had to sit down at work because she was so sick, the pain very intense, the nausea and pain unbearable.

A quick Google search reveal little on the BM consistency. A few hits though, linked to Celiac. The tests have been negative (4 times in total). I wonder if the allergist will test for gluten on the patch test.

The IBD results are back. Drum roll……. Negative.

I’m shocked.

If you believe that I have failed to convey the sarcasm that drips from the words.  Still, another test that has been done chalking Tylyn’s total of 22 negative tests to include the following list:

Celiac’s (x4)

Crohn’s (x3)

IBS

IBD

RA

Leukemia

Barium Enema

Barium Swallow

HIDA

Ultrasound

CT

IgE Milk RAST

SPT for food allergies

Anti-Islet Ab test

C-Diff

O&P

and countless other’s I have forgotten

Hey guys- how about some patch food intolerance testing?

Grrrr.

I have ordered two books to try and alleviate Tylyn’s symptoms. Although she has been ruled out for Crohn’s/ Colitis , IBS  and Celiac’s  I think she may benefit from trying a few meal preps targeted to eliminating preservatives, gluten and other possible triggers from her diet.

The books I have researched and chose to add to our list sport a lot of valuable information from patients that were not responding to pharmaceutical medications. In some cases the patients have full relief, while most have partial relief. I know in my internet travels I have seen reoccurring cross references to controlling all these diseases, including EE & EGE with diet. Why not? We have got to start somewhere as Pentasa is prescribed to UC and Crohn’s patients anyway with the most common side effects being abdominal cramping, nausea and diarrhea. For once I would love to see it list green stools.

They won’t arrive from Amazon until next week, by then the first phase of patch testing will be complete. If I can reduce Tylyn’s symptom’s by 50% through diet, that would be wonderful!

Here are the books I am going to try:

Breaking the Viscous Cycle

Healing Foods: Cooking for Celiacs, Colitis & IBS 

I am interested to see how her data will reflect diet changes and I feel better knowing that there is one more stone turned over in trying to make her well.

If anyone would like to check out how a medicine rates prior to using it check out Ask a Patient.   I was given this as a tip from a coworker and friend and have found it immensely helpful including my research about Singulair.

Educate yourself, be an advocate for you and your family and take charge of your life.

Things Get Ugly

I had hit the snooze button this morning and had just cuddled back against my boyfriend to steal a few extra moments of sleep before heading to work when I realized yesterday I should have requested a requisition (req) for a Chemistry panel.

I had asked for a CBC slip from her PCP to check her Eosinophil levels because she has been so sick. She is off the steroids for a little over a week now and I wanted to know if they had climbed back up. I was instantly awake as I had made a mistake of not requesting a Chemistry panel as well. I wanted this mostly because of my interest in her potassium (k+) levels.

To say the least Tylyn’s conditions have made me a bit paranoid.

Symptoms of low potassium are:

Weakness or Muscle Cramping

Tiredness

Tingling or Numbness

Abdominal Cramping

Constipation

Palpitations

Passing large amounts of urine or feeling thirsty all the time

Fainting due to low blood pressure.

Delirium, confusion or hallucinations

Granted Tylyn doesn’t exhibit any of the symptoms other than the Abdominal Cramping & Tiredness but then again they were the only symptoms she exhibited the night she was in the ER. But I guess I’m getting ahead of myself now, perhaps I should start where our nightmare REALLY began.

March 2011

I love March. It’s the end of winter and of course Tylyn’s birthday. I was really looking forward to her birthday even though last year was the iconic sweet sixteen. My ex husband and I had separated on that day, so it wasn’t held to the highest esteem within our family. In addition she was almost recovered from the bad sprain during basketball season that landed her in the ER.

Above: Tylyn in the ER at MMH after spraining her ankle at a BB game

This year however we had managed to wade through several bouts with the flu and purchased her prom dress. My family came up two day’s prior to her birthday on Saturday, March 5^th. As we ate, laughed and played a fun board game, attention shifted to Tylyn’s prom gown. Due to my family being out of town we all piled in my parents van and went to the shop so she could showcase her dress.

After a brief stop there we hit a couple of stores and Tylyn expressed not feeling well. She stated she had to use the restroom with her usual post eating ritual. When my mother delayed being in a store Tylyn vomited in the car. We returned home, her going upstairs and leaving me to clean up the vehicle with my dad before my family having to return home in it. 

She was sick the rest of the night. Pale and violent intervals of vomiting and diarrhea. Sunday she was still ill, no appetite but the sickness had subsided. Diarrhea was unchanged. I restocked our supply of Gatorade which was normally reserved for her sporting events.

-Monday she tried to eat something but again became violently ill. She stuck with Gatorade.

-Tuesday Tylyn watched TV and ate nothing, only trying to keep Gatorade down.

-Wednesday she felt great, stayed home and ate little, keeping goldfish and Gatorade down.

-Thursday she went to school and ate a little, feeling the best she had in days.We went out for dinner that night and she picked at a  couple of fries with gravy, some cottage cheese and sherbet. She was happy, REAL food.

Above: The day she ended up in the ER

After we came home I was raking the front yard and she came out on the porch telling me she had thrown up her dinner. She proceeded to tell me she was going to bed. It was 6pm. Not uncommon for the last few days.

Some time later I was in my office and I received a call from her. She complained of stomach pains and needed me to come upstairs. A quick assessment of her made my heart go in my throat. I went down and let Dan know that I needed to take her to the ER. I was thoroughly convinced she was having a gall bladder attack. In her words she was having stabbing pain under her rib in her upper right quadrant. Off to the hospital we went with her fading in and out of consciousness. I took her to our rural hospital due to the severity of her sickness as opposed to taking her to Strong or Children’s in either Rochester or Buffalo.

At MMH the night quickly became agitated as I tried to sign her in and Tylyn proceeded to throw up in the garbage can. It was flu season and evidently I was an annoying over paranoid mother. The nurse became more agitated when Tylyn wouldn’t respond to her questions, her eyes rolling back in her head. As a photographer and someone that had worked in the medical field, I snapped some pictures just in case she took a turn for the worse and nobody did anything. Later that night I told the nurse her fingers were blue and as they walked away they said over their shoulder “Perhaps she’s cold.” 

Above: Ty sick in the ER

Above: Tylyn's Blue thumb and nail beds

 It was three hours before we were seen. Five before we had blood results. Her potassium had bottomed out. They needed to give her IV fluids of 30MEq. Dan stayed with her while I ran home to get some sleep sometime after 1pm. I had to work the next day and was quite irritated when I found out they released her without her follow up labs.

After some hassle on Friday I managed to get my hands on her lab work. Everything was all over the place. She had bilirubin in her urine (not acceptable in any quantity) and had some immature WBC’s. They were only slightly higher but was a bit alarming as there were promyleocytes, metamyleocytes and myleocytes coming right out the bone marrow.

I know that sounds like a foreign language to most people but luckily for me my degree was in Medical Laboratory Technology. The three types of myleocytes in her blood are normally found in the bone marrow and mature there prior to being released in the blood. An increased count warrants a retest or at least a notation.

Results in hand I confronted her PCP who brushed me off. He said the more you had the better. I looked at him incredulously wondering if I should have continued my education to even begin to receive adequate treatment for myself or my family. He said that this is the first time he had heard of Tylyn’s diarrhea problem even though it was her regular doctor’s office.

The next morning the PCP’s office called and said the doctor had reviewed Ty’s charts and we needed to come in that morning, free of charge of course.

That visit revealed that he wanted to test Tylyn for Chrons and gallbladder disease. I had a bit of satisfaction at the look of concern on the doctor’s face when Tylyn revealed she hadn’t had a normal stool in over a year. It seemed someone finally took our “complaining” serious. We rejoiced even though he suggested seeing the GI whom we had already set an appointment with on Tuesday. The PCP said if the GI didn’t order the Barium enema, Sonogram or HIDA he would. Relief flooded us. An inch of progress and surely the knowledgeable GI doctor out of a prominent Gastro group in Rochester would agree that this was gallbladder issues. She had all the symptoms of GB disease and only one of Chrons which would be diarrhea.

Tuesday finally arrived, only to be a disappointment. The doctor ignored the lab work I brought with me, discounting any data that it presented. He interviewed Tylyn about sexual or mental abuse, suggested a sonogram and an endoscopy but refused to rule out Chrons or do a HIDA.

What was his focus in our 15 minute consultation? Whether Tylyn was emotionally distraught over a recent break up with a boyfriend or did she know what irritable bowel syndrome (IBS) was? He handed us information about the south beach diet and suggested an allergist. Through gritted teeth I informed him that she already had an appointment on Friday for an allergist and that she couldn’t have IBS if she didn’t eat anything. She had lost 13 pounds in 10 days at this point. Prescription anti-diarrhea medication did not even touch her condition.

He had nothing to say to her response that she had 4-5 BM on a good day, 15-20 on a bad day.Nor did he comment about if it was IBS or Chrons she should receive relief when she wasn't eating.

We left the doctor’s office a bit stressed and went to get something to eat. Ty ate off the south beach diet menu. We headed back home and Ty vomited up her entire breakfast. Like a trooper she wanted to get her blood work done that was being repeated to check her K+ levels. I scheduled the Barium enema for the next day due to her being mostly cleaned out from the constant diarrhea.

Wednesday the 16^th she underwent that procedure and missed another day of school. The results would later reveal no Chrons.

She attended school on that Thursday, the first day in week. Barely enough to keep up with two college level classes and three AP classes. Her course load was heavy- PreCalc, Spanish IV, AP English, AP Bio & AP US History. Her grades would suffer more before this was all over.

Friday revealed a slight skin allergy positive result to Milk. The allergist ordered an IgE serum test for milk and Anti- Islet Antibody test along with another antibody blood test. We planned on doing these on Saturday but it was moved to Monday after the PCP called us to tell us Tylyn had abnormal blood results. They needed to repeat testing. Her Eosinophils were 9% with the immature WBC’s still present.

Monday we had all her blood work done. The results were accidentally sent to the allergist which in turn delayed the PCP to revealing them to us. When they finally did we were referred to an Hematologist/Oncologist. The PCP who dismissed my concerns the first day after her being in the ER had no problem telling me over the phone they wanted to rule out Leukemia. I did not tell Tylyn but rather coordinated questions through my sister who works as a Counselor in an end of life clinic for cancer patients.

A little relief came from my sister’s boss and coworkers; doctors in the profession who felt that it wasn’t leukemia but rather a secondary reaction to something else that was going on in her body.

The Hematologist/Oncologist ordered repeat testing along with a RA Factor (for rheumatoid arthritis), ANA (anti nuclear antibody for Lupus and other autoimmune diseases) and another Celiac test.

Blood work was finally normal other than the ANA coming back slightly positive. To date no one has paid attention to this result.

Also tested this month:

Stool Samples- for Ovum & Parasites, C-Diff and Campylbacter

Multiple Blood Tests

Up Next: The Testing Continues