Why Meds?

It's funny when we tell friends or new acquaintance about Kaylin having EoE, the first response is usually, "Is there medication you can give her?"  But on the opposite side, when we explain she's on meds to friends in the EoE community, they ask "why?"  We also get a lot of questions from patients going down the road to using meds and ask if they really work and all the fun details.  Each kid is so different and at different states of this disease that it really varies whether it's a good option but for us, it was the only option.

Kaylin was always a fussy baby, fussy eater, fussy sleeper but she was healthy and happy for the most part.  Looking back, we now know how much the "fussy" part had to do with the EoE but at the time, so many of those things had just been explained away as "normal kid stuff."  When we got her diagnosis, we were given the 3 options of treatment.  First she was tested for allergies via skin prick testing and they asked us a million questions about foods and everything lead no absolutely no hint of having food triggers or food allergies.  The three treatment options were Medication, Top 8 Elimination and Formula.  Well immediately formula was off the table.  She had been on a full diet and growing and the symptoms we knew about would come and go and she'd seem fine for weeks.  Kaylin was starting preschool so the thought of having to completely change her diet and remove Wheat, Soy, Dairy, Egg, Fish, Shellfish, Peanuts and Treenuts seemed not only ridiculous but cruel.  She was already picky and never seemed to eat enough, we thought there would be NOTHING left for her to eat that she actually would eat.  When I've said it seemed cruel before, I get so many of the EoE parents in an uproar but for our daughter at age 4, it would have been.  As far as she was concerned, there was nothing wrong with her.  We also worried about her complying.  As we've since had to remove foods from her diet, we know now that we were right because even now that she correlates certain foods with pain, she still struggles with staying away from those foods.  Knowing absolutely nothing about food allergies or top 8 diets, they were basically telling us we could give her a medication that is working in most kids or turn our entire lives upside down with diet changes.  It was pretty simple.

The medication worked within weeks.  We noticed she stopped spitting up almost immediately, this was her major symptom we knew about at the time.  We didn't see any symptoms from the medication and the scopes proved it was working.

School's Here!!!

Well, almost.  Kaylin starts school next week and kinda last minute, we've decided to move her from our wonderful charter school to the regular elementary school.  There was a lot to that decision but school hasn't even started and we're realizing it's the right move.

On Monday, we registered Kaylin for school and I mentioned to the school receptionist that Kaylin has food allergies and I wanted to see when the nurse would be in.  She immediately got the health clerk who is at the school each day who I told about the EE and she took my information.  Well, by Wednesday I had an appointment scheduled to meet with the nurse that spreads her time between four schools.  Although we had a teacher last year that was amazing at dealing with food in the classroom, administration was less than helpful and I always worried about when she was in another classroom or what to do next year when her sister with peanut allergy starts Kindergarten.  A full time health clerk and nurse needed to be involved instead of a receptionist with a pair of crutches.

Our meeting with the nurse went amazing.  I had everything written up for her and she asked for permission to share it with Kaylin's teacher.  She went through our plan and understood the temptations because Kaylin is only 8.  But when Kaylin came in to introduce herself, the nurse asked Kaylin to help us keep her healthy.  She explained to Kaylin that we would have snacks for her in the classroom as well as the nurse's office but that Kaylin needed to be responsible and be part of the process.  She also reminded her that eating things her friends gave her without the teacher or parent was not allowed.  She told her that if she's experiencing pain, she lay down in the nurse's office and use the restroom but the goal is to get her back into class.  Hallelujah!!! I completely understand how difficult it is on Kaylin to be on a restricted diet at school but I also know she is the kid that will rise to meet expectations.  It's so nice to know that they are making her part of this process and holding her accountable as well as helping her.  Oh and the best part....she knew was Eosinophilic Esophagitis was!!!

Our latest Update

Well, we are coming up on another EE clinic appointment in just over a week and we're looking forward to one of the best ones ever. It has been six months since Kaylin has been seen in the clinic and she has been doing great.

Along with the Pulmicort slurry, we have managed to pinpoint the foods that she reacts to. As of right now she is off all dairy, pork, shellfish, rice, blueberries and we are careful to keep eggs and soy in small amounts - usually baked into other foods. We have thought for years about some kind of fruit bothering her but we were not able to put a finger on which one. A few months ago, she began throwing up blueberries and we knew we had found the culprit. I don't understand why she was able to tolerate them last year with small symptoms but this year led to throwing up and pain. This disease is so strange.

An Update

Updates and posts have been few and far between and not at all what I was hoping. I'm going to do an all inclusive post here and then try to go back and post some of the new articles and news that have come out recently. I know I have a bunch saved.

Kaylin had a really tough time this year starting in Feb. and we removed a handful of foods which seemed to initially help but she was feeling sick and throwing up more and more. Nothing had changed in her diet and her medications were the same. I finally pushed for her endoscopy to be done a few months early. Great news is, it's her best scope ever! Bad news was, she was still throwing up. At her follow up appt. they added Miralax into the mix and it has worked wonders. At first I thought the Dr. was crazy and that it was something more but she is now at the healthiest she's ever been!

She's continuing with the Pulmicort Slurry and Nexium. We will also continue with her diet. She is off ALL dairy and limited soy, egg, pork and rice.

Christmas

The holidays are always difficult trying to figure out what is safe to feed our girls. With Kaylin's milk allergy and Keira's nut allergy, eating at other people's houses and keeping the kids out of holiday treats that are ever present can be so overwhelming.

On our way places we've been stopping by McDonalds more than should ever be allowed, lol. It's not the healthiest but a Hamburger Happy Meal minus the fries is milk free for Kaylin.

I also discovered that Baker's Chocolate is dairy free and made Kaylin her own "truffles" for Christmas.

Kaylin did sneak some white chocolate in the middle of our holiday baking. She was spitting up again and complaining her stomach hurt. I didn't realize what had happened until I found the evidence and she fessed up. It was very clear to her what the cause and effect was and she agreed it wasn't worth it.

EE Clinic Appt

Well, this was actually one of the better appointments we've had. I feel like we've learned more in the last 5 months than we have in the last 3 years of this disease. June's scope was almost completely clear. There were 2, 3 and 5 eosinophils per hpf. It was the best scope yet after removing milk in April. The appointment that should have followed days after the scope did not happen until today. The doctors were happy with everything. Her cortisol levels were normal so we can continue the Pulmicort Slurry.

More Wheezing

Kaylin's school called yesterday and she wanted to come home since she was wheezing so bad. We started the nebulizer with Albuterol and scheduled an appt. for this morning with the allergist. The allergist agreed with us thinking the wheezing was triggered by allergies and started her on Nasicort for the allergies and we can continue doing the nebulizer as she needs it. If the asthma symptoms continue, the next step normally would be a preventative cortico-steroid like Flovent. The problem is, she's already on a medication like this in swallowed form for her EE. The last thing we want to do is add more. Hopefully it's just seasonal allergies and getting that under control will solve the problem. The current fires going on in So Cal and the super hot dry weather aren't helping!

August...

has been interesting.

Kaylin has had wheezing off and on which we can't figure out.

Her Aunt decided to feed her Whoppers (AKA Malted Milk Balls covered in Chocolate @@) without telling us. After 4 days of reflux, spitting up food, actually throwing up, a little wheezing and waking up night after night, we were stumped. A few days later, we heard through the grapevine she was given Whoppers, obviously containing milk. I can't even explain the frustration with that situation.

She went to a party with family in San Diego this last weekend which has resulted in allergy symptoms and bad wheezing the last four days and nights. She spent the entire first night coughing. This wheezing thing is new.

Last August was rough for her too with reflux symptoms but she also started school and got a new baby brother. We're still suspicious of enivironmental allergies though. The trips to San Diego to see family with inside dogs seem to be followed by a few days of stuffiness and reflux.

Scope Follow Up...Finally!

We've been struggling all summer to get an appt. to follow up for Kaylin's endoscopy done in June. We were told over the phone the scope results but did not get an official plan from the doctors. They called this week to schedule an appt. finally AND let us know that the EE Clinic is being turned over to the foundation rather than being part of the hospital. This means that the almost $200 "hospital fee" will no longer be charged!!!!! We'll be seen Sept. 21st!

Clear Scope!

We stopped milk in April and waited to scope. June's scope is almost completely clear. This is the best scope Kaylin has had since diagnosis!

Diagnosis

In Sept. 2007, Our three and a half year old was scoped and diagnosed with Eosinophilic Esophagitis.