Second Opinion Visit

Yesterday we went to Omaha to Boys Town and interviewed a new doctor to get a second opinion on Ashlyne and her treatment. All four parents went. We spent a little over an hour with Dr Prestridge, she is a lovely woman with over 18 years in Nebraska treating pediatric Crohn’s, she was at Children’s for 8 years and now at Boy’s Town for 10 years. We all really liked her, Ashlyne was very comfortable and she put many of our concerns and questions at ease. She is very willing to work with us as we investigate some alternatives to Remicade and definitely wants to try some other drug combinations and run some other tests before she would ever put her on Remicade. She is also willing to monitor as we try diet modifications and chiropractic and medication modifications to ensure Ashlyne’s stability. Much more receptive and open than Dr Z was when we brought alternative care up to him last Summer. We will meet with Dr Z tomorrow morning with Ashlyne to cover the same concerns and questions.

Reply fro Rick Heil of SonicFlood

From: Rick Heil
To: Home
To: Todd & Amy Kaylor
Subject: hey from Rick with sonicflood
Sent: Mar 24, 2009 4:58 PM
hey Ashlyne, my name is Rick Heil with SONICFLOOd and i was diagnosed with crohns disease when i was 11 years old. im so sorry to hear about your struggle with the illness but our Lord Jesus Christ is the Healer... im sure of it! i was wondering if you had changed your diet and if you were taking probiotics and digestive enzymes?
if your interested to see my testimony please click on this link: http://www.youtube.com/watch?v=sh2txCYoTu0
the Lord has healed me and im living proof that He still does His wonders today...

PEACE,
Rick Heil

March 20th lab results

Well once again this week we got bad news regarding Ashlyne's labs. Her liver (ALT) is now up to 176, 31 is the highest they want to see. Good news her white cell count is up to 4.1/2100, which is very good and means no more face masks at this time. Dr Z is removing her from her immunosuppressant 6mp and ran a gamut of blood work and urinalysis on Thursday to try to determine for sure whether the 6mp is the cause or something else. Logic tells him it is the 6mp. We will not have results back for about a week as the 6mp test is sent to San Diego CA and takes a while to get results. Dr Z says unless something else is determined to be causing the liver to be so high he will recommend putting her on remicade. The one drug we have been trying to avoid due to the risk of lymphoma and high rate of infection that this drug causes. http://www.remicade.com/remicade/global/index.html

Ashlyne also saw a primary physician to confirm that she is not experiencing any other infections/illnesses that might be the cause. Dr Haberle did not find anything else wrong with Ashlyne.

Needless to say this is not good. There are so many questions and concerns. If Ash is non symptomatic at this time is Remicade ultimately the best decision. She has been unstable since she started on the medications (last June) and not until she was put on the restrictive diet did she get healing and go non symptomatic. Has diet been the controlling force? Once Ashlyne starts Remicade there is no going back, if you do not continue the treatments every 6-8 weeks the body will build antibodies against the treatment and you will become allergic and not be able to use this treatment. Remicade is the level 3 medication, there is not level 4, there is no where to go from here. She is 12 years old, what does this mean when she is 20, 30, 50, 60? What is the long term affect on her development, she is prepubescent and there are no long term studies on girls on this medication for long periods of time?

Please pray right now and whenever you think of my little girl and ask God for clear and decisive treatment if it is not His will to heal her. Pray as parents we can come together and agree on her treatment path. Pray for her current and future health. Pray for her strength to handle all this.

In His Grip,
Wendy

Ephesians 3:20-21 20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

Matthew 18:19-20 19 "Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. 20For where two or three come together in my name, there am I with them."

March 9th Visit to Children's

Today was another 6 hour round trip to Omaha to see Dr Zapata. Clinically Ashlyne is doing very well, she is having no symptons of her Crohn's. Weight wise he considers her stable, though Ash is not happy with her increased weight. Heighth he is okay with since May of 08 she has grown 2.4 cm, her medications can cause stunted growth as well as active disease, we will continue to watch growth. Her labs are still under close monitoring as there is still much instability and unanswered questions to why the flucuations. Her white cell count and segments are down again putting her at greater risk for infection, her white count was 3.69 and seg (nuet #) down to 900 today. She needs to stay away from sick people and should really wear a mask but she really does not want that. So we will monitor this. Her ALT (liver tox levels) are back up to 97. Two weeks ago white cell was 4.1/1800 and liver 41. Dr Z can not explain the up and down. We will do labs again next week.
He is making no real changes in her treatment or diet. The only change is he is dropping her to 20mg of prilosec instead of 40mg. We do not return until April 27th for now. In April she will be tested for her 6mp again unless something alarms him in her regular labs.
Not sure if no news is good news but for now that is what we have. Dr Z continues to say he wants to avoid putting her on Remicade so we will continue to monitor her.

Wendy