My little girl was diagnosed with Ulcerative colitis at the tender age of 15months.
She was so sick, dealing with blood in her stool at least 15times a day. She would wake up every single night at least 5 times. I will never forget the nights I sat with her in the bathroom, trying to comfort her.
She took 12 pills of Pentasa a day . I remember one lonely night in the hospital , a nurse came to me in the middle of the night, and she asked me, if the dosage that was on my daughters chart was correct. I said yes. She responded by telling me , that she had never heard this amount of this medication approved in a child her size. I was so sad. I just felt like a failure , like a mom that was helpless to her child. I was searching for the answer to why my 15month old little girl was so controlled by this disease. I took her the best doctors in Ohio, I stayed up hours and hours looking for answers on the internet for anyone that could her get better. It was so overwhelming.
My daughter is now nine years old. I am literally crying tears of joy as I type this. There was a time that I thought that tomorrow would never come for her. She faced so many health issues that just controlled her everyday life. Today she is a healthy beautiful little girl that is striving in everything that she does. She is so strong , she is determined , and she is just an amazing child.
I have a letter that I wrote about the sad days and long nights that we went through with Hailey Anna. I wrote this letter to be given to any GI doctor that wants to help another child get better. Since Hailey has been well, I have so many doctors that admit to me now that they know that bacteria or parasites cause UC and Crohn’s disease. They tell me "they do what works" They control the inflammation or they stop the immune system from trying to attack the invader that is attacking the body.
Please take the time to read the letter I wrote about what happen to my daughter. Many nights after I put her to bed, I read the letter. Her life is so different now. I know in my heart ,the body was made to be healthy. It will be faced with sickness , it needs to be nurtured back to health. It needs to be understood, and to be listened to.
January 20th 2007
Subject: Six years old with UC
I am writing this letter in hopes you find some interest in what has happened with our daughter. She was a full term baby. Weight of 8lbs.12oz. She had slight jaundice after birth, which was treated at home. She did have a little problem with thrush at times when she was little. She also was a very colicky baby. She was breast fed for the first six months after birth.. At the age of 15 months she developed vomiting and bloody diarrhea. We took her to Akron Childrens Hospital and they did stool cultures and blood work. She was seen by a Pediatric Gastro and scheduled for a colonoscopy
September 5th 2001 her Gastro doctor explained to us that the biopsies from her colonoscopy showed there was no perianal disease noted. The scope was passed without difficulty to the level of the cecum. Throughout the entire colon visualized, there was loss of vascular pattern with lymphoid hyperplasia and erythema. He felt like her colitis was due to a milk allergy. He suggested we keep all dairy out of her diet and she was put on Elecare.
In July 2002 she developed blood in her stool again. She also developed telengiectasia on her face. August 2002 her doctor did another colonoscopy and it showed there was no perianal disease noted. The scope was passed without difficulty to the level of the cecum. Throughout the entire colon visualized, there was a granular appearance to the mucosa with a loss of vascular tissue and friability. Multiple biopsies were taken. This appeared to be a mild pancolitis.
At this time he put her on Prelone 6 mg b.i.d. and pentasa 500mg t.i.d. still with no dairy in her diet. She responded well. Her stools actually became constipated. While on steroids, she developed left facial drooping. Her doctor weaned her off steriods slowly.
In December 2002 she starting withholding her bowels. She was having bowel movements every three days and would complain of pain when she had to use the restroom. At this time she was on 500mg Pentasa t.i.d. Her doctor prescribed Lactoluse and we were told to keep her on a high fiber diet. She showed improvement and we eventually were able to get her to have daily bowel movements.
In January her family doctor sent her for a Rast allergy test and she was found to be allergic to 11 of the 22 foods they tested for. Her diet was changed to follow the results.
February 2003 we took Hailey for a second opinion to a Gastro at the Cleveland Clinic where a Meckel’s scan and more blood work were done. Her Current meds were: Pentasa 500 mg, Fer-In-Sol 75mg 0.7 ml po bid & 0.9 ml po bid Duphalac Syrup 10G/15ML PO 1.5 tbls bid, Miralax Powder 1 tsp. po Qd. This doctor felt her colitis was secondary to allergies. In September 2003 during a follow-up for rectal bleeding with her regular Pediatric Gastro he noted mild bruising on the anterior tibial surface of the face and ordered a CBC since she had a low platelet count of 150,000 one year ago.
While at his office the CBC results showed her platelet count had dropped to 40,000 and we were sent immediately to the Hematology-Oncology Dept. for evaluation of thrombocytopenia. She was observed and follow-up platelet counts were continued over several weeks and in October she was taken to her family doctor where she was referred to Akron Childrens Hospital Division of Hematology-Oncology department. Her platelet count was found to be 18,000 and she was admitted at that time for evaluation. Her work-up revealed an anticardiolipin IgA and a positive platelet antibody with a specificity to platelet-specific glycoprotein IV. In addition she had antibodies directed against Class I HLA antigens. Her reticulocyte count was not elevated, and her direct Coombs was negative.Her urinalysis, while it showed mild hematuria, was negative for proteinuria. Her ANA was negative. The doctor felt that her thrombocytopenia was immune mediated, and he administered WinRho.
Her platelet count increased to 202,000. The doctor felt that Haileys response to antibody therapy for thrombocytopenia confirms the immune etiology of her thrombocytopenia.
At this time her serum immunoglobulin levels were normal with the exception of a minimally low serum IgM. At the end of October 2003 her platelet count was down in the mid 60,000. She was then given winRho again and scheduled for a bone marrow aspiration and colonoscopy. Her biopsies showed continued eosinophilic infiltrate with some inflammatory cells.
Hailey continued to have problems. At this time we were scared and frustrated about how her health had deteriorated and we wanted more answers. We then took her to an Immunologist in Cleveland and she was then diagnosed with Selective IgM deficiency. Both her serum IgG and IgA were normal. Antibody responses to polysaccharide antibodies were abnormal. She failed to make adequate antibody responses after the Pneumovax. At this time she was put on Bactrim prophylaxis ( two teaspoons at bed time)and gastrocrom one vial q.i.d. She was also taking 12 pills of Pentasa daily. She continued to have flare-ups and missed 60 days of school due to her immune problem and colitis. She was admitted into the hospital several times and was given steroids to slow her colitis.
At this time we were very aggravated with the medicines that had been given throughout the years for Haileys condition. Her GI doctor explained to us that she was becoming steroid dependant. He wanted to start her on Imuran. He also talked to us about removing her colon. He explained that he has many children to go on to be "just fine." We were devastated. We expressed how we felt to Haileys Immunologist. He suggested we try high dose IVIG infusions he told us in high doses he has seen improvement with colitis. The side effects seemed less than the Imuran and we agreed to start the infusions. Hailey had the infusions once a month in high doses. Unfortunately, the infusions made her colitis worse and had to be stopped. We were at a dead end again.
We started taking our daughter to a natural doctor in August of 2006. He put her on many herbs to detoxify her body and probiotics to produce good bacteria in her bowels. We were so determined to give him our all. Hailey developed a bad cold and cough and under the natural doctors advise we continued to give her herbs in hopes that her body would fight back. Finally on October 26, 2006, her condition deteriorated to the point we decided that she needed to be seen by a true medical doctor.
We took her into her family physician and they found that she had pneumonia. We were always told due to her IgM deficiency that pneumonia was what we always had to worry about since her body would not fight it off. We felt so bad for her. She was dealing with her colitis, going to the restroom at least 10+ times a day and 5+ times at night. Now she had developed pneumonia. Her doctor said she needed to be treated with antibiotics ASAP to get the pneumonia under control. She wanted to give Hailey two shots of Rocephin, (one gram) her only concern was that it would make her colitis worse. We had no choice but to get the pneumonia under control and if she needed to be hospitalized for the colitis we would deal with that.
So they gave her the shots in her legs and we left the doctors office and Hailey slept for the entire day without any of her normal medicines and she was also not going to the restroom at all. She slept through the entire night with NO bowel movements. The first time this has happened in months. She woke up the next morning and went to the restroom. Her stool was formed. We were very surprised and confused. Since she did not have any of her medicine. The only thing different was the Rocephin shot she had for her pneumonia. She had a follow-up appointment with her family physician and she asked us how Haileys colitis was.
We told her how she slept all through the night without getting up to go to the restroom and how she went that morning and the stool was formed. She looked at us with disbelief. We asked her exactly what Rocephin targets and she said microorganisms. She then prescribed a ten-day course of Omnicef and said to wait and see what happens.
Since October 26, 2006, Hailey has had no signs of her colitis and is taking no medicines. We contacted her GI and explained how the Rocephin shot changed her colitis within a 24-hour period. He responded that he felt that was not possible. He told us to wait it out and see what happens. Since that weekend of October 26, 2006. He has made no effort to call her to see how her condition is.
On December 11th 2006 we took Hailey for a follow-up appointment with her Immunologist we
told him what had happen with the Rocephin shot. He explained to us that he has seen other antibiotics having the same effect, but never Rocephin. He cautioned us that her colitis may return.
He gave us a prescription for Ceftin to give Hailey in case she has a flare up. December 31, 2006 Hailey came down with the flu. She had vomiting and diarrhea. In the past every time our daughter would get the flu it would put her colitis in a major flare. She would go 30 times a day with bloody bowel movements. This time when she had the flu. She had NO pain, NO urgency, and NO blood in her stools. She had the flu like any other normal person would have it. Her stools also formed after the flu was over. We were amazed!
On January 8, 2007, Hailey went to her immunologist and we explained how she had the flu on New Years eve and how she was able to get over it with no problems. Her doctor was very surprised to hear that she was able to do so well with the flu. He was also surprised to hear she was still not taking any medication for her colitis. He kept shaking his head and saying how strange it was that she has made such drastic changes. That day he was much more positive and told us he was very interested to see if her IgM levels have changed. He took blood work that day.
On January 9, 2007, his nurse assistant called to tell us that Haileys IgM levels were in normal range. Her immunologist has assigned his resident doctors to start a case study on what has happen with our daughter.
Now for the strange part of our story. Around the same time our daughter developed bloody stools our family dog also started with the same symptoms. We told EVERY doctor that we took our daughter to that she and the dog both were having similar symptoms. In case you were wondering the dog was put outside to live in the garage and our daughter did not have much interaction with the dog after they both developed bloody stools. We also had well water at the house we were living at and we also had it tested since they both were suffering from bloody loose stools. They did many tests (over the last six years) and told us that there was no connection between the dog’s illness and hers. Our family dog passed away the same day our daughter was giving the Rocephin shot that has taken her colitis away.
We believe that our family dog and our daughter had gotten some type of bacteria that did not show up on the normal tests. We know this part of our story sounds very strange but this is what happened. We are a upper middle class family and live in a very nice clean home in a normal suburban neighborhood. We do not live around any other types of animals. Our previous home was constructed on an old cow pasture and one of our neighbors did experience bloody stool in the mother and young daughter and had to be treated. Also their well system had to be chlorinated due to the contaminates (unsure of what was found but it was a normal bacteria they test for in well systems). Our well system never showed any problems and we never drank from the neighbors well systems.
We are only telling you this because we really think that there is some type of bacteria that our daughter had in her system for six years and was undetected by the Normal lab tests available, why else would the Rocephin drug have this affect on her body?
Years and Years of this terrible disease with no answers or cures. The journey that we have taken with Hailey has been so overwhelming to our family. She and our family are living a very HAPPY and NORMAL life that we have not experienced since she was 15 months old.
This has been a true miracle in our lives. Today our daughter is happy, healthy, and a medication free child that can eat anything she wants with no problems. We have started our own journey to try to help others that are struck down with this terrible disease, we have been in contact with the drug company that manufactures Rocephin. They have contacted us and advised us they are forwarding Hailey’s story to their top researchers.
We would be grateful for any advice you could share on what has happened with our daughter. Most Gastro doctors are speechless and offer no explanation to what happened or have much interest in looking further into this possibility of a bacteria living inside the body that long. That is why we are persistent in telling our story to any medical professional that will take the time to look into using Rocephin or similar drugs for a first line treatment in stopping this disease.
The current medicine protocol used in the disease (seems to us) only to offer limited help with no prolonged effect. If we could only help just one person it would be worth it. Please contact us with any questions Thank you for your time and advice.
Dave and Kelly