# HAILEYS LETTER



## 21791 (Nov 14, 2006)

Hello I have a daughter that is six years old. She was diagnosed with ulcerative colitis. I remember the night she woke up with diarreah and vommitting.She was 18 months old. The doctors felt that it was due to her starting to eat foods or to a milk allergy. We eleminated all dairy from her diet and she showed some improvement. The same time that she started with symptoms, our family dog also started losing his bowel movements. We told every doctor we took her to and they did many,many,many stool samples to check for a bacteria. Never finding anything. She was on 12 Pentasa a day ,did not control her colitis. The first time she was on prednisone she showed improvement. She would do OK in the summer and then winter came around and she would flare up. Her doctor said that was typical with this disease. She also developed ITP and Selective IGM defiency. We went to so many doctors and all they could tell us was that she had nonspecific colitis and they had no cause and no cure. She continued to have flare ups. The second time on prednisone she went 8 weeks on it and no improvement. We tried IVIG infusions on her once a month in high doses, it made her colitis worse.Her doctor said her next step was to be on Imuran. We were so determined to find a better answer. Her whole colon was inflamed it was either Imuran or colon surgery.We started taking her to a natural doctor, and he put her on many herbs to detox her body,didn't see much of a improvement. We tryed the SCD diet,the makers diet,and we limited her diet so tremendously. She started symptoms of a cold. Any other time,because of her immune problem,her family doctor would immediately start amoxicillin on her to help her cold. Well, because we were going to the natural doctor, he didn't want to do antibiotics,he said it would mess up all the probiotics he was giving her to get her good bacteria in her bowels growing. Finally she woke up with a earache and my husband and I decided that she needed to be seen be a medical doctor. We took her to her family doctor and on top of the ear ache she had developed pneumonia. We felt so bad for her. She was dealing with her colitis(going at least 10 times a day and waking up about 4 times at night to go to the bathroom)now she was also dealing with pneumonia. Well her family doctor wanted to give her 2 shots of Rocephin. A very strong antibiotic. The only concern is that it will make her colitis worse. So my husband and I didn't know what to do. We had to get the pneumonia better and then deal with the colitis,so we went ahead and had her get the shots. We left the doctors office and Hailey wanted to go thru Wendys drive thru for chicken nuggets and french fries. Something she was not allowed to have due to her colitis. My husband and I decided to get her some Wendy's. She went home and slept ALL DAY LONG with NO bowel movements and No medicine. We didn't give her medicine,because she had fell asleep on the way home from Wendy's. In the meantime our family dog was living out in the garage(because of her colitis) I went out to ask her to come inside the house,she likes to come in with our kids to get interaction. She wasn't moving much and I could tell something was wrong. My husband took it to the vet and before they could start a IV on her she passed away. So I have Hailey up stairs with pneamonia and now her family dog has just passed away. So that night we where expecting Hailey to be up going to the bathroom even more, because of the antibiotic. Just the oppossite. She slept all night long with NO bowel movements. The first time this has happen in months. She woke up that morning went to the bathroom and it was a dark brown formed stool! My husband and I were astactic. Later that day she had to go to her family doctor for a followup check up and she asked how her colitis was and we told her how she slept through the night and went once that morning and her stool was formed. She looked at us in disbeleif. We asked her exactly what Rocephin targets and she said microrganism.Could she of had a microrganism in her all this time that the doctors never found? Her family doctor also put her on omnicef for ten days(orally) and she said to wait it out. She has now been off of the omnicef for 9 days and she is living life like a normal child. She is eating whatever she wants and having No pain,No urgency,and her stools are completely formed. We called her gastro doc to tell him the change the antibiotic had made, he in no way felt the change was due to the anitbiotic. I can tell you that the antibiotic altered her illness within a 24hour period. I am posting this because our daughters condition has been chronic for the last six years. She was nearing the end of the doctors protocol for the treatment of this disease. It was a fluke that she was put on Rocephin for her pneumonia and for what ever reason it altered her condition within a 24 hour period. There are so many people with this disease that do not respond to the meds and my daughter was one. I have posted Haileys Letter on other colitis forums in hopes to help anyone.Many people have responded to our post and directed us to this forum. My husband and I beleive our family dog and our daughter got a bacteria and we HOPE our family Dog took the sickness with her when she died. How weird is it that our daughter gets better on the day our dog passes away. That is our story and I want to tell the world.PLease email me if you want to talk. I am going to try to post her story on the web,HAILEYS LETTER. Years and years of this HORRIBLE disease with no answers and no cure, I get sad looking at the forums and remembering how I would sit up all night looking for answers on the web. We tryed it all and to think one shot of antibiotic has made her better so far.Please email me with any questions.Thank you for listening to my long,long story


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## Mom (Nov 27, 2006)

Hi. My son is 11 years old and I just read Hailey's letter. My son started with horrendous cramping and diarhea last January--we did all the tests and ended by demanding surgery. They removed a meckles diverticulum and "unexplained" scar tissue along with his appendix. The surgeon feels he must have had an appendicitis that went undetected and eventually healed itself. He picked up everything coming down the pike after that--excruitating pain--EXPLOSIVE diarhea--everytime. he seemed to get a little better over the summer but recently things have gotten rally bad. We are doing the probiotic thing now--been through God knows how many Doctors (even pyschiatrist and pyschologist because it was "stress"--of course the pyscholgist and psychiatrist said we can't help until you fix the physical!)We are exhausted and the only thing that keeps me going is I know how much worse it is for him. Is there a test for this microbacteria you are talking about? Antibiotics seem to make my son worse so I'm afraid but I am definitely going to research this antibiotic. Thanks and ANY input or advice you have is greatly appreciated. I am so glad Hailey is feeling better cause this is hell on Earth.


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## 21791 (Nov 14, 2006)

I am so sorry to hear about your son. This disease is Hell on earth. I completly know how you feel,to watch your child so controlled by this illness.My daughter went to the best doctors at Cleveland Clinic and noone was able to find relieve for her. I am interested to know what kind of probiotic that your son is on? I know Hailey took Florastor and I have also heard good things about VLS#3. I also posted HAILEYS LETTER on Healingwell.com I have found Healingwell.com to be a wonderful forum. Two people have taken the antibiotic for UC since I have posted, both finding some relieve.I also posted what Haileys immuneoligist said about what has happened with the rocephin shot. What antibiotic has your son been on? As far as a test for the microbacteria, Haileys doctors are still saying that she never had a bacteria in her body. I know that rocephin changed her illness within 24 hours. I am so convinced they are wrong. As a mother, my instinct has always been, that Hailey and Tigger got some kind of bacteria.I know that doctors are trained to control the symptoms with medicines, and their are so many unknowns about this disease. Please go on to Healingwell.com you will find so much more information. I really pray that your son feels better.Please email me anytime you want to talk.seiberts###sssnet.com hope to talk to you soon Kelly


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