Thursday, October 25, 2012

Eosinophilia

Say that 3 times fast. So in my last post about Kennedy's test results, I mentioned that her intestines were covered in white blood cells indicating food allergies. Those cells are called Eosinophils. They told me this word the other day but I couldn't remember it and didn't know how to spell it so when they told me it was a type of white blood cell, I just stuck with that. I know what those are. ;)

So, increased Eosinophils can mean a few things... most commonly they are caused by a parasite or fungal disease. However, this has been ruled out for Kennedy through blood tests and stool samples and her biopsies. The next most common cause is food allergies which is why they wanted her to see an allergist. Because her Eosinophil count was so high, they wanted her to get in ASAP. I called the allergist they referred her to on Monday morning and they made her an appointment on Tuesday morning. Talk about fast service!!

The allergist tested her for all the common food and environmental allergies...


When all THOSE came back normal, he did more on her arms through a different process. Those tested negative too. He also did an x-ray of her sinuses which came back normal. So, he referred us back to GI.

While I was relieved that it was NOT a food allergy (because I just knew it was going to be something like wheat or dairy that she loves!!), her GI doctor was pretty discouraged to hear this. The next step is to go to Denver to the Eosinophilia Clinic. (Yes. There's really a clinic for this.) She said they're booking about 2 months out right now but they're going to push to get Kennedy seen sooner than that, however, before they see her they'll want to examine the slides from her biopsies themselves so that may take a little while.

So of course, I asked her to tell me the name of these "white blood cells" and to please spell it for me. And then I googled. And google is not my friend. I need to learn not to google. However, to save all YOU from googling (because you know you want to), I'll just give you the rundown. So when someone has Eosinophilia (I can spell that without looking now) and they've ruled out parasites and allergies, they look at other causes. These causes range from things like Adrenal conditions, skin disorders (which the allergist ruled out), Autoimmune diseases, endocrine disorders and tumors. When they get more specific, they talk about Leukemia. A lot. Especially when the patient has already had other cancers. There's even something called Eosinophilic Leukemia... who knew?!

Our list is getting short, the respiratory things like asthma have been ruled out due to the eosinophils not being in her esophagus and lack of symptoms. All skin/allergy/parasite disorders have been ruled out. Even the colitis has been ruled out which is interesting since she has a history of it. I'm still hoping the doctors in Denver will say it IS the colitis after all. Different doctors can say different things, right? We've had that happen more times than I can count. They can't tell me if the eosinophils are in her blood or not, because they didn't specifically check for that and they said since Denver will undoubtedly want to do their own blood work they'll just wait for them to check. I'm fine with that.

And so we wait. I'm praying it's just colitis. We've dealt with a colitis diagnosis for her since 2009. And maybe it's just presenting differently now. Treat it, and all those eosinophils will go away. Right? Right. That's my prayer. Please make it yours, too. I'll update when we have an appointment for the Eosinophilia Clinic. Yes. There's really a clinic for that. Thanks for praying. Again.

PS. If anyone knows how to get purple sharpie marker off skin, that would be awesome! ;)

22 comments :

LaForestGump said...

I don't like where this is going. I'm hoping for the best. Your poor baby, all these tests. I hope they figure it out quickly.

Hope said...

Try Olive Oil to get the marker off. I use it all the time for theater makeup and it works wonders on getting it off !

k_schinaman said...

Oh, Dear Kennedy!! Praying you all get the answers you need.

Tracy said...

Ugh! Didn't see that coming! Praying it is nothing serious!

SherryA said...

My kids have used baby wipes to get ink off their hands after rubber stamping, don't know if that will help. Rubbing alcohol. Did anyone mention doing blood work for suspected allergies? They can do those specific for wheat or dairy or there are blood tests that look for antibodies to certain foods. My daughter tested negative to skin tests to dairy but in blood work she tested very high to cheese and moderate to various milks and milk products. Skin testing is not very reliable for food testing. There are two types of food allergies. One is more instant such as hives and I think that is when skin testing is most useful. The others are when the antibodies build up in the body and cause delayed symptoms. As much as allergies are not a fun thing, it sure would be a better answer than things you are finding when searching. Best of luck.

Anne B. said...

Making your prayer mine as well. Also praying that you don't let your mind go to all of those other places while you wait! I think I've mentioned before how much I dislike waiting...ok...how much I HATE waiting. Which is probably why I google too! Meanwhile, how are Kennedy's headaches? Enough already. Dear Lord, please wrap Kennedy and her mommy in your comfort and protection. Give them peace while they wait and give Kennedy healing as only you can. In Jesus' precious name, Amen!

Runningmama said...

Thinking of you and praying that Kennedy just has colitis or nothing at all and all of it is just a fluke.

Sewconsult said...

Praying that God will heal Kennedy. Praying for the doctors' wisdom and compassion while finding her diagnosis. Praying for peace and calmness for you, Rene.
Beckie

my family said...

praying you prayer too

as far as the marker at least it is on her back and not swimming season

you all remain in my prayer

McCammons said...

My son has allergies. He has a GI Dr that here is here at Childrens Hospital and she is from Denver. We couldn't figure out the problem either. All his blood tests came back clear, his endoscopy and colonoscopy came back with a lot of fat in his stomach, which believe it or not turns out that means he needs A LOT more fat in his diet and he can't have a lot of natural sugars. Candy bars are way good for him, but he can't have apples, grapes, etc. About the only fruit he can eat without having a reaction is bananas. (thank goodness bc they are his favorite) He can't have fruit juices and he is lactose intolerant to the point where they have hospital milk (pedia-sure peptide) delivered to us monthly bc he can't even tolerate soy milk. It's crazy what their little bodies can and can't do. It only took us 2yrs to figure his problem out. I am praying your Drs can help her figure this all out very soon. She shouldn't have to keep going through everything she does. Hugs and prayers.

Becca said...

I hope the answers are good news!! Poor Kennedy. :-( And yuck to the marker...

ashley said...

Almost any "permanent" marker will wash off with the use of a polar organic solvent. The most common household ones are alcohol (rubbing alcohol or whatever spirits you drink) and acetone-based nail polish remover.
Otherwise, it will wear-off overtime as the skin sloughs off.

Amanda said...

Thinking of her! I was recently diagnosed with eosinophilic esophagitis... makes it hard for me to swallow and food get stuck in my throat. My brother has it too but he's never gone to the doctor for it. I had never heard of eosinophils before last October and now I'm hearing it all over the place. I had no idea there was a clinic like that!

We are Air Force at Andrews AFB in MD... there's a doctor studying EE that I've been seeing. We are supposed to PCS to Whiteman AFB, Missouri, so I really hope this doesn't keep us from going.

Kimberly said...

Praying for Kennedy.

If you haven't gotten it off yet, sunblock always wipes off permanent marker every time I use it to write my phone number on my girls when we go to amusement parks.

Lynn said...

You know I'm praying so very, very hard!!!!!!!!!!!!!!
Philippians 4:8-9 Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things. Those things, which ye have both learned, and received, and heard, and seen in me, do: and the God of peace shall be with you.
My email address

Mundanemomma said...

Has she ever been tested for cystic fibrosis? I only ask because my friend's little boy was recently diagnosed at age 7, and his only symptoms were chronic diarrhea and he was smaller than his peers. It's a simple test too, a spit test.
I hope everything is ok, the poor little thing has had more than her fair share of medical stuff! You'll be in my thoughts.

Emma Stormy said...

I can't imagine waiting and wondering...all I can say is praying for Kennedy AND you!!! Love you!

Lisa said...

Praying for you Sincess! I really hope and pray this is not where it seems to be heading. XOXOXOXO

momof4as said...

Always keeping Kennedy in my prayers. I hope you all get to have a fun Halloween.

Jan and Randy said...

So very sorry to hear this. PRayers going up for you guys.

Jan

Jackie Mulholland said...

Any news? I have been praying hard for you guys!

JennaJennJenn said...

I don't pray very often but I'm definitely praying for this to just be colitis. And also praying for some peace of mind for you while you wait for the appointment.