Haileys letter

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haileys letter
Regular Member


Date Joined Nov 2006
Total Posts : 296
   Posted 3/14/2009 11:17 PM (GMT -6)   
This is my true story about how my little girl suffered under the care of the best doctors in the state of Ohio.
 
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 almost 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 8 ½ year old 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.
Sincerely,
Dave and Kelly
 
 
 
 
 
 
 
 
 
 
 
 
 


 http://www.healingwell.com/community/default.aspx?f=38&m=643365&p=1<!-- Edit -->
Dave & Kelly
Daughter 8
Diagnosed at 15months with UC (pancolitis) then  Selective IgM defiency
Took many medications, no relief,GI wanted to start her on Imuran.
Took her to a natural doctor. He did a detox on her body.
Going to the restroom 15 times a day, developed pneumonia,recieved shots of Rocephin (wide sprectrum antibioitic) within24 hours of Rocephin bowels were formed.Since October 26 2006 she has been well without any medications. She takes Forvia multi vitamin ,Natures Way Primadophilus Reuteri, Viactiv calcium chew daily.
 
 
 
 
 
 
 
 
 

Post Edited (haileys letter) : 3/14/2009 10:21:16 PM (GMT-6)


buckeyeinchicago
Regular Member


Date Joined Feb 2009
Total Posts : 40
   Posted 3/15/2009 12:48 AM (GMT -6)   
WOW, that is an incredible story. I am happy to hear that Haily is doing better and hopefully this news is able to help others.
Diagnosed when 13 and am now 25, female. Currently taking 100mg of 6mp, started at 60 mg of prednisone and now down to 30 mg, and 12 pills of asacol a day. I tried cortifoam for this flare and it didn't work. Previously I've tried all types of rectal meds but nothing ever helped. In the past I've tried rowasa, enemas, pentasa, colazal, sulfasalizine. I was in a four year remission until the end of January.


mudua
Regular Member


Date Joined Apr 2007
Total Posts : 459
   Posted 3/15/2009 12:15 PM (GMT -6)   
I read this letter some time back. I asked several doctors to give me a prescription for this drug and they simply refused

James l
Regular Member


Date Joined Jul 2008
Total Posts : 95
   Posted 3/15/2009 1:40 PM (GMT -6)   
I wonder if this will put me to 100% remission.
JAMES - 19 Years old. 2nd year in college.
5'11. Pre-med student
Was bodybuilding for middle weight class at 175lb with 6%bf. then BOOM. UC kicked in for the first time in my life
Diagnosed with UC in Feb 2008. Lost 25lb in three weeks. Bloody hell diarrhea
Flare up in june 2008. took more antibiotics. Harder flare
Took prednisone for two months then 6mp. But I decided to get off on both.

10/08Started drinking hard liquors and once drank 15 shots in an hour.
Next day flare up.
11/08 Started anti-yeast regimen. I crapped out so much yeast. confirmed candida in stool studies.

On: No med but zinc, cod liver oil, coral calcium, probiotics, threelac, alpha lipoic acid, chlorella, sea salt, licorice root, aloe vera juice, VSL#ds(started 3/10/09)

Started eating dairy and all kinds of cheese again(beginning of March and I'm fine)
in 95% remission, E-mail me if you have any questions about how I achieved my remission.


James l
Regular Member


Date Joined Jul 2008
Total Posts : 95
   Posted 3/15/2009 2:18 PM (GMT -6)   
I keep reading your letter again and again. It's really moving.
JAMES - 19 Years old. 2nd year in college.
5'11. Pre-med student
Was bodybuilding for middle weight class at 175lb with 6%bf. then BOOM. UC kicked in for the first time in my life
Diagnosed with UC in Feb 2008. Lost 25lb in three weeks. Bloody hell diarrhea
Flare up in june 2008. took more antibiotics. Harder flare
Took prednisone for two months then 6mp. But I decided to get off on both.

10/08Started drinking hard liquors and once drank 15 shots in an hour.
Next day flare up.
11/08 Started anti-yeast regimen. I crapped out so much yeast. confirmed candida in stool studies.

On: No med but zinc, cod liver oil, coral calcium, probiotics, threelac, alpha lipoic acid, chlorella, sea salt, licorice root, aloe vera juice, VSL#ds(started 3/10/09)

Started eating dairy and all kinds of cheese again(beginning of March and I'm fine)
in 95% remission, E-mail me if you have any questions about how I achieved my remission.


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1198
   Posted 3/15/2009 2:26 PM (GMT -6)   
Its sad that these things aren't taken into account and tried on people immediately.

Diagnosis Oct 07 and then Aug 08: Inditerminate Patchy Colitis. Also suffer from Peptic Ulcers could be related to Asacol. Current Medication: 500mg Asacol Suppositories, 800mg Asacol Tablets x 2 a day.


James l
Regular Member


Date Joined Jul 2008
Total Posts : 95
   Posted 3/15/2009 2:28 PM (GMT -6)   
Did anyone else try taking Rocephin?
JAMES - 19 Years old. 2nd year in college.
5'11. Pre-med student
Was bodybuilding for middle weight class at 175lb with 6%bf. then BOOM. UC kicked in for the first time in my life
Diagnosed with UC in Feb 2008. Lost 25lb in three weeks. Bloody hell diarrhea
Flare up in june 2008. took more antibiotics. Harder flare
Took prednisone for two months then 6mp. But I decided to get off on both.

10/08Started drinking hard liquors and once drank 15 shots in an hour.
Next day flare up.
11/08 Started anti-yeast regimen. I crapped out so much yeast. confirmed candida in stool studies.

On: No med but zinc, cod liver oil, coral calcium, probiotics, threelac, alpha lipoic acid, chlorella, sea salt, licorice root, aloe vera juice, VSL#ds(started 3/10/09)

Started eating dairy and all kinds of cheese again(beginning of March and I'm fine)
in 95% remission, E-mail me if you have any questions about how I achieved my remission.


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16732
   Posted 3/15/2009 2:31 PM (GMT -6)   
No, on drugs.com it says it is NOT a drug that should be used on a patient with intestinal issues (colitis specifically). I wonder if it would help any of us.

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 3/15/2009 6:28 PM (GMT -6)   
Hmmmm, but this drug put this wonderful child into remission.
 
 
Dx:  UC Proctitis 2006 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence. 
Started Meds:  Apr 9 08 500mg 5ASA (salofalk) to ease flare, tapering, stopped. 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 Added: tumeric and probiotics.
 
 


therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3670
   Posted 3/15/2009 8:08 PM (GMT -6)   
I tried the shot and for one day I was normal, formed stools and no inflammation but it didn't last. I think I have a bacteria problem and it requires longer treatment. I'm on LDN now, I'm seeing a allergist for food allergies, yeast, bacteria in a month, hopefully more light will be shed on my UC

Very mild left sided (could have fooled me with the "mild")  UC. STARTED LDN ON 1/25/09. Supplements:  Cod Liver, Probiotics, multi whole food vitamin, olive leaf extract.


haileys letter
Regular Member


Date Joined Nov 2006
Total Posts : 296
   Posted 3/16/2009 8:56 AM (GMT -6)   

 Thank you to everyone that thinks of Hailey and wishes us well. I wish the same for all of you.

 Since I posted Haileys letter, I have had some parents say that their children UC's symptoms have gone away , after being on Omnicef. I just reposted the letter on Dragonpack.com and there is a mom on there right now  that posted how her son's symptoms improved while being on omnicef for a sinus infection.

  I wish I could say that it will work for everyone, unfornately it will not. I post Haileys letter, because if it helps one person be free from ulcerative colitis, my time is well worth it.

   Dr. Thomas Borody ( the doctor from Australia that discovered that ulcers are caused by the bacteria H. pylori  ) Remember all the years everyone said they were caused be stress??

 He has done more research and believes that Crohns disease and UC are caused by bacteria imbalance or invasion of a bacteria in the colon.  His theory is to reset the gut flora. In other words kill all the bacteria off and start again. That is why I believe that UC is NOT  caused by the immune system attacking itself.

 I believe that only the inflammatory part of the immune system appears to be involved. The inflammation is due to T cells that migrate to the colon and then release cytokines and/or have direct killing effects and cause the ulceration. Immunosuppresive drugs work to inhibit the activity of these T cells specifically. The drugs are also used in organ transplant recipients to dampen down their T cells so that they don't attack the transplanted organ and reject it.

 Haileys immunoligist believes that she had a bacteria in her colon. He explained that we are exposed to thousands (millions? ) of bacteria in our life that it is difficult to identify the bacterial strain responsible in our colon. He calls her a " success story" 

 

 

 



 http://www.healingwell.com/community/default.aspx?f=38&m=643365&p=1<!-- Edit -->
Dave & Kelly
Daughter 8
Diagnosed at 15months with UC (pancolitis) then  Selective IgM defiency
Took many medications, no relief,GI wanted to start her on Imuran.
Took her to a natural doctor. He did a detox on her body.
Going to the restroom 15 times a day, developed pneumonia,recieved shots of Rocephin (wide sprectrum antibioitic) within24 hours of Rocephin bowels were formed.Since October 26 2006 she has been well without any medications. She takes Forvia multi vitamin ,Natures Way Primadophilus Reuteri, Viactiv calcium chew daily.
 
 
 
 
 
 
 
 
 

Post Edited (haileys letter) : 3/16/2009 8:06:51 AM (GMT-6)


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 3/16/2009 10:32 AM (GMT -6)   
Wow. Very interesting.
34 yr old male. UC for 14 years. Started left-sided, most recent scope shows pancolitis. 30mg pred (as of 2/01/09), 12x pills Asacol per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Spinach and sunflower seed diet (moderated recently due to kidney stones). Multivitamin. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!) "I poop in the woods because I can"


therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3670
   Posted 3/16/2009 10:59 AM (GMT -6)   

I agree with Hailey's mom and believe UC is a bacterial problem. When I took the shot then Omnicef that one day I was completely and totally normal. My NP said it was too much of a good thing and at that time I don't believe I was taking probiotics to replace killing off the bad bacteria.

Sugar feeds bacteria and when I eat sugar I feel my inflammation kick right up. I'm seeing a good specialist and I can't wait to get some testing done about bacteria in the colon. I've had the regular stool and breath tests, but I think more can be done.

I'm going for a Prebiotic as well as trying a Probiotic now.

I do believe the Rocephin and Omnicef may help those will low bacteria problems and haily only being 6 years compared to me being 35 the bacteria upset I'm sure took years to unbalance.

Thank You Hailey's Mom, I will remember to share my experience with my new allergist.


Very mild left sided (could have fooled me with the "mild")  UC. STARTED LDN ON 1/25/09. Supplements:  Cod Liver, Probiotics, multi whole food vitamin, olive leaf extract.


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 3/16/2009 11:13 AM (GMT -6)   
I lived over an Animal Hospital, which I also worked in, at the time I developed UC. I was exposed to all sorts of good stuff over the 4 year course of living there, plus 2 years working in another one before that. I definately think there is a connection somewhere. No GI's ever asked me what was going on at the time my UC started.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 3/16/2009 12:52 PM (GMT -6)   

Hi Kelly,

I absolutely applaud you for your continued efforts to spread information that will be helpful to those suffering with UC.  I completely agree with the bacterial infection theory.  I remember you from way back when...I was on the boards alot at the time because my daughter was also sick..although she was much older than Hailey.  I'm so glad to hear that she's doing well now!

Fast forward 3 years, and my daughter now has a jpouch.  I was so scared when she was sick, searching for answers, coming here talking to people, trying to figure out what to do for her.  I asked for guidance from her GI doctor and am so angry as I think back to his attitude.  I asked about probiotics because the antibiotics seemed to make her worse.  He said if we wanted to try probiotics, that he was "a science man" and that if we wanted to try that, we were on our own.  I think that attitude is changing, thank goodness, because there's clear evidence that UC is bacterial in nature and there are some very good probiotics out there. 

After her surgery, her surgeon told her that she'd have to take probiotics the rest of her life to maintain good gut flora.  I just wish we'd have tried VSL 3 when she was suffering with UC to see if she could have achieved remission.  Hers was one long vicious flare and she now suffers from Osteonecrosis from the Prednisone use (for 4 months).  So, like you, I have a mission to raise awareness.  My mission now, trying to raise awareness about the risk of Osteonecrosis (ON), to encourage anyone with joint pain to suspect Prednisone and to get an MRI to rule out ON/AVN (avascular necrosis). 

I wish you well with your continued efforts!  Your undaunting drive to inform will surely make a difference in someone else's life and that's what it's all about!   


20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
VSL #3 DS
21 yo Daughter diagnosed with right shoulder, bilateral wrist, 
bilateral elbow, bilateral knee, and bilateral ankle avascular necrosis
(aka Osteonecrosis) as a result of Prednisone use
 


haileys letter
Regular Member


Date Joined Nov 2006
Total Posts : 296
   Posted 3/16/2009 6:17 PM (GMT -6)   
 
 I am right with you on a mission!
 
 I am sorry  to hear that your daughter has gone through so much. I hope people read this and understand how serious Prednisone is.
 
 I applaud you . I understand all the searching and searching you did. I understand the trust that you had in the doctors you took your daughter to.  I definetly understand how scared you were. I remember many panic attacks and just nights of pure sadness I would feel.
 
 If Hailey wouldn't of received the antibiotic shot I am sure she would of had the surgery.
 
 I wish the best for you and your daughter.
 
 Thank you for posting. It made a difference in my life today. 
 
 
 
 
 
 
Dave & Kelly
Daughter 8
Diagnosed at 15months with UC (pancolitis) then  Selective IgM defiency
Took many medications, no relief,GI wanted to start her on Imuran.
Took her to a natural doctor. He did a detox on her body.
Going to the restroom 15 times a day, developed pneumonia,recieved shots of Rocephin (wide sprectrum antibioitic) within24 hours of Rocephin bowels were formed.Since October 26 2006 she has been well without any medications. She takes Forvia multi vitamin ,Natures Way Primadophilus Reuteri, Viactiv calcium chew daily.
 
 
 
 
 
 
 
 
 

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