In & Out in 60 minutes!

Kaylin's followup appointment in the EE clinic was today and we were in and out in 60 minutes flat....that has to be a record!  It's been six months since her last appointment and she's doing great as long as she doesn't eat any of her "trigger" foods.  Her last scope was June 2010 and we will not be scoping until the end of the year!!!!  This will be about 18 months between scopes, the longest she's ever been and the longest the clinic will let her go.  She will continue on the current medications (Pumicort Slurry, Nexium & Zyrtec) and diet modifications with no changes since she's doing so well.

They will be scheduling a dexa scan to measure bone density since she has been on meds for almost four years now that can possibly have effects on the bones.  That will be done as soon as they can schedule it.

During her next scope they will also be doing additional bloodwork since it was noticed today that her tonsils and lymph nodes are extremely small.  They could not see her tonsils at all and thought they had been removed at first.  They are checking for an additional immune deficiency.  One more thing to worry about as they check "just in case."

Weston's scope is scheduled for August and it can't come soon enough.  He was up last night screaming for over an hour in pain.  It's freaky to watch him because it's like Kaylin being 2 all over again.  We haven't even introduced the soy or rice milk back in like we will before then.  Not looking forward to this at all.

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.

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.

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.