Detailed Update

Ashlyne had a 6 week check on Tuesday, Dr Zapata did not run blood labs since Ashlyne was a little dehydrated due to her having to fast for her ultrasound. Initial ultrasound looked like inflammation or thickening of the Terminal Ileum was still present, upon pushing Ash did experience some pain but minimal. She has still had no growth in height, she is up to 91 pounds but Dr Z is sure 8+ pounds is prednisone. She is off prednisone officially as of Tuesday. He is making no changes, we will go back in 6 weeks and monitor her blood labs until then and then run the 6mp and stool sample test again then. IF she remains asymptomatic and labs stay good we may make diet modifications in April. Ashlyne's headaches were better today but when she came to pick up her meds to go to her dad's she asked for Tylenol so they are still there but not as bad. A very exciting praise is the Crohn's and Colitis foundation called tonight and Ashlyne is 1 of 12 kids from Nebraska getting to go to California for Crohn's & Colitis camp in July. The camp is called the Painted Turtle, founded by Paul Newman. Dr Z did say on Tuesday he would sign her off and plan on her attending unless she goes into a severe flare. Pray she remains stable until after camp!!!

Awful Headaches

Yesterday my Doctors appointment went fine. He didn't change anything which is fine with me and right now the soonest I'll be off this diet is the end of March or beginning of April. Today I stayed home from school because I was dizzy and had an awful headache. it is not going away completely it comes and it goes. I wish I could go to the Chiropractor so that he could adjust me so that this headache would go away. If I am not better tomorrow mom is going to take me to the doctor. Please keep praying for me to get better and that my mom and dad would both find jobs. Keep checking on my blog to see whats going on.

1/9/08 Update

Dr Zapata Called today. Ashlyne's labs from Monday came in and her CBC (blood count) and liver tox levels came back within normal levels. Dr Z is still perplexed in Ashlyne's 6mp levels changing so much. At this time we will continue to taper Ashlyne off the prednisone, starting tomorrow Ashlyne will start on Budesonide, the steriod that is not absorbed like prednisone and is supposed to not bring on so many of the systemic side affects that Ash is being haunted with. Dr Z does not want to wait until she is off the prednisone, last time Ash went off the prednisone within a few days her symptoms started coming back, pain, blood etc. Dr Z wants to be sure she is covered with a steriod and there is no lapse in that treatment. The rest of Ashlyne's medication will remain the same. Ashlyne will remain on her 60% elemental liquid diet. Dr Z says he will most likely keep her on the diet until she has been symptom free for at least 2 months following the last time she takes the prednisone. Right now the soonest her diet will change is the first of April. As you can imagine Ash is not happy about that, she wants fruit sooo bad.

Ashlyne had a tough day today, she was made fun of by a boy, not terribly, she said it was more the way he said it than anything. We knew it was only a matter of time and have been so thankful that she has been left alone. Still it really heart her feelings and triggered a lot of emotions. Then top it off with her diet news. We talked thru it and she is doing just fine now. Continue to keep her in your prayers and ask for a hedge of protection be put around her when she is at school and that this was an isolated incident and not the beginnings of something.

Please pray for the insurance to come thru with payment for her supplements, we still do not have news that they will cover it. This new medication is extremly expensive, and both families could use the financial relief of insurance coverage.

Wendy

Jan 8th More results, still no direction

I spoke with Dr Zapata's office a couple of times today. I called in first thing cause Ashlyne mentioned last night after youth group she had been experiencing difficulty breathing off and on the last few days. She said there was no pattern and not if she was running around. Ashley with Dr Z's called back and instructed us to take Ash to her primary doctor in Kearney to be examined and they had gotten her stool sample results from Dec 19th. Her Cal-protectin (spelling is prob wrong) levels were elevated which is an inflammatory marker in the stool for Crohn's patients. UGH! So basically our exciting Dec 16th visit showing improvement was not the total picture, the visual looked good but the labs are not coming back very good. We are still waiting on Monday's labs, Dr Z does not want to make any decisions regarding her treatment until he gets those results. Back to Ashlyne's breathing issue, after sitting in the dr's office for over an hour, Dr Paysen could see no issues that might be causing the breathing issue. Her one thought was that Ash was starting to react to the Gentimiacin (antiobiotic) that she started back on last Thursday and suggested maybe putting Ash on Zyrtec and Benedryl if the symptoms increase or she started showing other symptoms. Dr Paysen was quite perplexed and wanted me to discuss her findings with Dr Z before we did anything. While Darin, Dr Paysen and I sat there and discussed all this, for some reason it came to me maybe it had to do with Ashlyne's head position. She had a breathing issue when we were in the waiting room, she was looking down doing homework. We mentioned it to Ash and she said that could be it, she has had increased swelling in her face and neck over the holidays and now that she is back in school she is looking down a lot more. Ashlyne is going to monitor the symptoms now in relation to if she is looking down or not. I am relieved that it may be something so simple. Dr Z in the meantime is going to have Ashlyne continue to drop off the prednisone, starting tomorrow she will drop to 15mg for 5 days, then 10mg for 5 and so forth until her next appt on Jan 27th. Hopefully Monday's lab will come in tomorrow and we will hear something more positive.

Wendy

New Years Resolution (kinda)

This year my New Years resolution is more like a prayer or hope. It is that I get better. Right now it is up to this disease to see what I am doing later this year. I really want to go to a camp for kids with Crohns and Ulcerative Colitis but I have to be in a stable state and we have to have a doctors ok and we are approaching the deadline so it doesn't look like I am going to be able to go this year which I am really upset about. Later in the summer I want to go to Phoenix to visit family and celebrate my coulins birthaday with her. I also to be better for my thirteenth birthaday so that my mom can make me a normal birthday cake. At the end of the year we are wanting to go with the Kearney High Band to New Orleans for their band trip. I really want to go so that maybe I can see some of the damage from Hurricaine Katrina and to see what a band trip is like before I get into highschool. Please keep me in your prayers as you can see that I am not doing as well as I should be right now. Also you should come up with your own New Years resolution because it will heip you reach your goals in life.

Lab Results and Dr Zapata Call

Bear with this one, it is complex to understand the lab results.

Dr Zapata called today with blood results from Ashlyne's 6mp blood test taken when we were in Omaha on Dec 16th. The 6mp test is run in a lab in San Diego, it is the only lab that runs the test Dr Z needs to see, so it is no uncommon for these results to take 3-4 weeks. The 6mp is Ashlyne's immunosuppressant drug, it has two different levels they watch for the control of her Crohn's.

When she was last tested Ashlyne's levels of the 6mmp was almost twice the hightest level they want. 6mmp is supposed to be below 5700 and she was well over 9000, I think 9800. Even though it tested so high they felt the benefits of the 6mp outweighed this negative of toxicity, or at least in the short term. The other level has a target level of 200-400. When Ash was first tested after being on 6mp for 8 weeks (Aug) she tested at a level of 186, so they increased her to 50mg daily of the 6mp. When Ash was at the 9800 6mmp level she actually tested in the 300's so that is why they kept her at 50 mg daily cause it did get her into the effective levels.

Dec 16th lab work came back with her level now down to 142 and her 6mmp is down to 4077. 6mmp level is now good but her other level is too low for effectiveness of the drug. This could be why her sed rates were slightly elevated last week again. To Dr. Zapata this does not make sense since from her ultrasound in Dec she has had healing. He does not understand if she is on the same levels of drugs (6mp) why are her levels changing so much. Normally if a patients condition was worsening they would consider that she was not absorbing the medication due to a flare. Dr Z is waiting for the results from the blood work we took on yesterday.

He is also considering changing Ashlyne to a different steriod than prednisone called budesonide, this does not absorb into the body as much and does not have the systemic side affects that prednisone has. He feels Ashlyne is a good candidate for this drug. If you read up on the drug its side affects are really not much different than the prednisone, I have not looked at the chemical info on it to understand the system affects that Dr Z mentioned.

Ashlyne's face is more swollen then ever, it is moving down her neck more and more. Her body hair is growing and her hair line is starting to connect with her eye brows, along with more facial and body hair, this is not making this little girl very happy. Ashlyne is experiencing more frequent headaches also. She weeped in my arms last night and this afternoon wanting things to be different. So we are now waiting till Wednesday or Thursday when her labs come in before Dr Z makes any changes.

Please pray that God's will will be done in her treatment, we want to pursue Chiropractic treatment as we have meet multiple Crohn's patients in our area who have been helped tremendously by receiving chiropractic treatment. Due to custody issues this is currently not possible. Ashlyne wants to try chiropractic anything to help her with her disease and improve her quality of pre-teen life. Please pray that this will become an option of treatment in coordination with Dr Z's expertiese. I know many of you have sent us email links and articles about the many successful alternative treatments and we thank you so much for your support and interest in her care. Steve and Jo Wood have been so pro active in seeking information for Ashlyne's health, we thank you for the input from you and your Chiropractor. Minda Hampton has given us tons of great links and leads. Thank you. Please continue to let us know of any new information, we have to try everything we can to help her.

Please pray that Ashlyne will continue to be encouraged by prayer and her relationship with God and she will not become discouraged. Pray for her healing, perseverence and patience with this all. Pray that her diet will continue to satisfy her and that the insurance will come thru and cover the elemental supplement she is on. I am sorry for the lcomplexity and length of this blog, trying to explain her lab results means nothing if you have nothing to base them on.