Crohn's Disease Forum » Parents of Kids with IBD » Dad of a Crohn's Kid


12-07-2018, 01:08 PM   #1
Poochie
 
Join Date: Dec 2018
Dad of a Crohn's Kid

Hello everyone! I've been looking around the forum for a while now...studying, researching, learning, and finally decided to join up and tell my little girls' story. My daughter was diagnosed almost 3 years ago with Crohn's Disease. She started having unbelievable stomach pain, occuring anytime and anywhere. The doubling over on the floor kind of pain that as a parent makes you feel the most useless because you can't help them or ease their suffering. We brought her in to the hospital and after several tests it was determined that she had Crohn's. A colonoscopy confirmed it and the diagnosis was official. The doctor recommended starting Humira immediately with a side dish Prednisone. I definitely wanted a second opinion, so I started her on the steroids to help the inflammation and took her to Children's Hospital. The doctor there was incredible, my daughter fell in love with him instantly. He ran his own tests and confirmed the diagnosis and treatment route. We started our Crohn's journey with Humira along with the steroids. The prednisone helped tremendously with the pain and inflammation, but along with prolonged use came the side effects. After riding on Humira's coat tails until she had enough in her system, it was time to taper her off. I hated seeing the toll the steroids were doing to do her and the infamous "pie face" was starting to develop. Humira, that was a nightmare...my daughter hated it! The self injections were a battle, especially the first round of initial doses. How do you tell your then 13 year old...Here baby, take this pen...hold it to your stomach and push the top to make a needle inject your medicine. We tried the thigh, hip and the butt...problem was that she is skinny to start with and had no real "meat" to inject in to. It was definitely a mental thing, the pain was about a little more than a finger prick blood test. But, the fear and anguish she felt about doing it made for a heart breaking experience. She stuck with it for a year, the injections never got better...always a painful and tearful event, even with motivational speeches and rewards when finished. And along with the immune suppressant came all the little colds and sniffles that become major events. We had to watch who she was around, make sure family or friends weren't sick when they came over. I should have invested in hand sanitizer and Clorox wipes! Eventually her body developed anti-bodies against Humira and she came out of remission and began to flare. Next stop...Remicade! Because her body developed anti-bodies against one medicine, her doctor put her on 6MP to ensure it wouldn't happen again. 6MP is basically a chemotherapy drug used to supress the immune system even further and stop pretty much any anti-bodies from forming. Just this drug alone required frequent blood tests...everything had to be monitored and white blood cell counts had to be measured and the drug levels adjusted until it was just right. Then came the Remicade. My daughter loved it, no more self injections, sit in the leather recliner in the infusion wing, breakfast plates from the cafeteria, a day off of school...the life of luxury. I have to say, it was incredible to see her without the fear and trauma of self injections and become laid back with her treatments. The first few rounds of infusions took forever, they had to slowly build it up in her and see how she would react. Now she is on a fast flow valve and it's over in an hour. It was my decision to pull her off steroids, and my next mission was to get her off the 6MP. After reading about this drug and the future side effects when she ever decides to have children of her own. (if any boy can make it through my back ground checks and barbed wire fortress.) After her initial rounds of infusions, and I saw her perking up and responding to it, i started looking into "alternative" treatments and found CBD. I researched the crap out of this stuff and discussed it with her doctor. He was hesitant, mostly because he didn't know alot about it. I found a good quality, medical grade brand and dove in. I gave it to her every day, in the afternoons and it showed no ill effects. I talked with the doctor about pulling the 6MP, and again it was my decision to take her off another drug. My daughter (after I removed and disposed of the remaining pills) took the pill bottle outside and smashed it with a hammer and lit it on fire...all while playing the "Fight Song" on her iPod. It was truly an empowering moment. After a few months of Remicade and CBD doses, I had the doctor run the tests. She was back in remission, no signs inflammatory markers and her calprotectin levels were right where they should be. Eureka! We've stayed on this path for a while now, and my next mission is to get her off of Remicade. I've been studying medical "alternative" methods day and night, non stop. I've talked to several MM doctors and patients. I read up on so many scientific studies about specific MM for Crohn's. I decided to give it a try with the consent of her doctor. It was a very interesting trial and error process. There are no set dosages or anything that fit every type of situation or person. When I finally found the sweet spot for her, I stuck with it and continued with it every other day alternating with the CBD oil. Again, there was no adverse symptoms, no negative effects, no difference in school work...simply natural therapy. After a few months I had the doctors run the tests again. BAM! Absolutely no signs of inflammation anywhere, every marker they look for was perfect. Her calprotectin test, I almost framed the result! It was in the range of what a "normal" person should be. Her doctor said that by looking at her results, for a Crohn's patient, this is as good as it gets. He has classified her as being in clinical remission (meaning everything on paper looks good and no signs of Crohn's is present in tests) He has scheduled a colonoscopy early next year to confirm everything is visually good to rule it an actual remission. My next goal for her is to be off of Remicade, I'm not ready to make that move until after the scope. I'm in no way, shape or form saying she is cured, or will never have another flare up or pop up symptom, I'm saying she is stable, happy, enjoying life, not worrying, pain free and most of all...off of the potentially dangerous drugs. Thank you for reading her story, I know it turned out longer than planned but our Crohn's journey has definitely been an adventure.
12-08-2018, 03:45 AM   #2
OrlaRi
 
Join Date: Aug 2018
Location: Mullingar, Ireland
[QUOTE=Poochie;1015497]Hello everyone! I've been looking around the forum for a while now...studying, researching, learning, and finally decided to join up and tell my little girls' story. My daughter was diagnosed almost 3 years ago with Crohn's Disease. She started having unbelievable stomach pain, occuring anytime and anywhere. The doubling over on the floor kind of pain that as a parent makes you feel the most useless because you can't help them or ease their suffering. We brought her in to the hospital and after several tests it was determined that she had Crohn's. A colonoscopy confirmed it and the diagnosis was official. The doctor recommended starting Humira immediately with a side dish Prednisone. I definitely wanted a second opinion, so I started her on the steroids to help the inflammation and took her to Children's Hospital. The doctor there was incredible, my daughter fell in love with him instantly. He ran his own tests and confirmed the diagnosis and treatment route. We started our Crohn's journey with Humira along with the steroids. The prednisone helped tremendously with the pain and inflammation, but along with prolonged use came the side effects. After riding on Humira's coat tails until she had enough in her system, it was time to taper her off. I hated seeing the toll the steroids were doing to do her and the infamous "pie face" was starting to develop. Humira, that was a nightmare...my daughter hated it! The self injections were a battle, especially the first round of initial doses. How do you tell your then 13 year old...Here baby, take this pen...hold it to your stomach and push the top to make a needle inject your medicine. We tried the thigh, hip and the butt...problem was that she is skinny to start with and had no real "meat" to inject in to. It was definitely a mental thing, the pain was about a little more than a finger prick blood test. But, the fear and anguish she felt about doing it made for a heart breaking experience. She stuck with it for a year, the injections never got better...always a painful and tearful event, even with motivational speeches and rewards when finished. And along with the immune suppressant came all the little colds and sniffles that become major events. We had to watch who she was around, make sure family or friends weren't sick when they came over. I should have invested in hand sanitizer and Clorox wipes! Eventually her body developed anti-bodies against Humira and she came out of remission and began to flare. Next stop...Remicade! Because her body developed anti-bodies against one medicine, her doctor put her on 6MP to ensure it wouldn't happen again. 6MP is basically a chemotherapy drug used to supress the immune system even further and stop pretty much any anti-bodies from forming. Just this drug alone required frequent blood tests...everything had to be monitored and white blood cell counts had to be measured and the drug levels adjusted until it was just right. Then came the Remicade. My daughter loved it, no more self injections, sit in the leather recliner in the infusion wing, breakfast plates from the cafeteria, a day off of school...the life of luxury. I have to say, it was incredible to see her without the fear and trauma of self injections and become laid back with her treatments. The first few rounds of infusions took forever, they had to slowly build it up in her and see how she would react. Now she is on a fast flow valve and it's over in an hour. It was my decision to pull her off steroids, and my next mission was to get her off the 6MP. After reading about this drug and the future side effects when she ever decides to have children of her own. (if any boy can make it through my back ground checks and barbed wire fortress.) After her initial rounds of infusions, and I saw her perking up and responding to it, i started looking into "alternative" treatments and found CBD. I researched the crap out of this stuff and discussed it with her doctor. He was hesitant, mostly because he didn't know alot about it. I found a good quality, medical grade brand and dove in. I gave it to her every day, in the afternoons and it showed no ill effects. I talked with the doctor about pulling the 6MP, and again it was my decision to take her off another drug. My daughter (after I removed and disposed of the remaining pills) took the pill bottle outside and smashed it with a hammer and lit it on fire...all while playing the "Fight Song" on her iPod. It was truly an empowering moment. After a few months of Remicade and CBD doses, I had the doctor run the tests. She was back in remission, no signs inflammatory markers and her calprotectin levels were right where they should be. Eureka! We've stayed on this path for a while now, and my next mission is to get her off of Remicade. I've been studying medical "alternative" methods day and night, non stop. I've talked to several MM doctors and patients. I read up on so many scientific studies about specific MM for Crohn's. I decided to give it a try with the consent of her doctor. It was a very interesting trial and error process. There are no set dosages or anything that fit every type of situation or person. When I finally found the sweet spot for her, I stuck with it and continued with it every other day alternating with the CBD oil. Again, there was no adverse symptoms, no negative effects, no difference in school work...simply natural therapy. After a few months I had the doctors run the tests again. BAM! Absolutely no signs of inflammation anywhere, every marker they look for was perfect. Her calprotectin test, I almost framed the result! It was in the range of what a "normal" person should be. Her doctor said that by looking at her results, for a Crohn's patient, this is as good as it gets. He has classified her as being in clinical remission (meaning everything on paper looks good and no signs of Crohn's is present in tests) He has scheduled a colonoscopy early next year to confirm everything is visually good to rule it an actual remission. My next goal for her is to be off of Remicade, I'm not ready to make that move until after the scope. I'm in no way, shape or form saying she is cured, or will never have another flare up or pop up symptom, I'm saying she is stable, happy, enjoying life, not worrying,

Thanks for your inspirational story Poochie. My 7 year old has just started Methotrexate jabs and she hates needles, so a weekly blood test & weekly jab are hard going. What is the oil you’re referring to?
12-08-2018, 03:46 AM   #3
OrlaRi
 
Join Date: Aug 2018
Location: Mullingar, Ireland
Hello everyone! I've been looking around the forum for a while now...studying, researching, learning, and finally decided to join up and tell my little girls' story. My daughter was diagnosed almost 3 years ago with Crohn's Disease. She started having unbelievable stomach pain, occuring anytime and anywhere. The doubling over on the floor kind of pain that as a parent makes you feel the most useless because you can't help them or ease their suffering. We brought her in to the hospital and after several tests it was determined that she had Crohn's. A colonoscopy confirmed it and the diagnosis was official. The doctor recommended starting Humira immediately with a side dish Prednisone. I definitely wanted a second opinion, so I started her on the steroids to help the inflammation and took her to Children's Hospital. The doctor there was incredible, my daughter fell in love with him instantly. He ran his own tests and confirmed the diagnosis and treatment route. We started our Crohn's journey with Humira along with the steroids. The prednisone helped tremendously with the pain and inflammation, but along with prolonged use came the side effects. After riding on Humira's coat tails until she had enough in her system, it was time to taper her off. I hated seeing the toll the steroids were doing to do her and the infamous "pie face" was starting to develop. Humira, that was a nightmare...my daughter hated it! The self injections were a battle, especially the first round of initial doses. How do you tell your then 13 year old...Here baby, take this pen...hold it to your stomach and push the top to make a needle inject your medicine. We tried the thigh, hip and the butt...problem was that she is skinny to start with and had no real "meat" to inject in to. It was definitely a mental thing, the pain was about a little more than a finger prick blood test. But, the fear and anguish she felt about doing it made for a heart breaking experience. She stuck with it for a year, the injections never got better...always a painful and tearful event, even with motivational speeches and rewards when finished. And along with the immune suppressant came all the little colds and sniffles that become major events. We had to watch who she was around, make sure family or friends weren't sick when they came over. I should have invested in hand sanitizer and Clorox wipes! Eventually her body developed anti-bodies against Humira and she came out of remission and began to flare. Next stop...Remicade! Because her body developed anti-bodies against one medicine, her doctor put her on 6MP to ensure it wouldn't happen again. 6MP is basically a chemotherapy drug used to supress the immune system even further and stop pretty much any anti-bodies from forming. Just this drug alone required frequent blood tests...everything had to be monitored and white blood cell counts had to be measured and the drug levels adjusted until it was just right. Then came the Remicade. My daughter loved it, no more self injections, sit in the leather recliner in the infusion wing, breakfast plates from the cafeteria, a day off of school...the life of luxury. I have to say, it was incredible to see her without the fear and trauma of self injections and become laid back with her treatments. The first few rounds of infusions took forever, they had to slowly build it up in her and see how she would react. Now she is on a fast flow valve and it's over in an hour. It was my decision to pull her off steroids, and my next mission was to get her off the 6MP. After reading about this drug and the future side effects when she ever decides to have children of her own. (if any boy can make it through my back ground checks and barbed wire fortress.) After her initial rounds of infusions, and I saw her perking up and responding to it, i started looking into "alternative" treatments and found CBD. I researched the crap out of this stuff and discussed it with her doctor. He was hesitant, mostly because he didn't know alot about it. I found a good quality, medical grade brand and dove in. I gave it to her every day, in the afternoons and it showed no ill effects. I talked with the doctor about pulling the 6MP, and again it was my decision to take her off another drug. My daughter (after I removed and disposed of the remaining pills) took the pill bottle outside and smashed it with a hammer and lit it on fire...all while playing the "Fight Song" on her iPod. It was truly an empowering moment. After a few months of Remicade and CBD doses, I had the doctor run the tests. She was back in remission, no signs inflammatory markers and her calprotectin levels were right where they should be. Eureka! We've stayed on this path for a while now, and my next mission is to get her off of Remicade. I've been studying medical "alternative" methods day and night, non stop. I've talked to several MM doctors and patients. I read up on so many scientific studies about specific MM for Crohn's. I decided to give it a try with the consent of her doctor. It was a very interesting trial and error process. There are no set dosages or anything that fit every type of situation or person. When I finally found the sweet spot for her, I stuck with it and continued with it every other day alternating with the CBD oil. Again, there was no adverse symptoms, no negative effects, no difference in school work...simply natural therapy. After a few months I had the doctors run the tests again. BAM! Absolutely no signs of inflammation anywhere, every marker they look for was perfect. Her calprotectin test, I almost framed the result! It was in the range of what a "normal" person should be. Her doctor said that by looking at her results, for a Crohn's patient, this is as good as it gets. He has classified her as being in clinical remission (meaning everything on paper looks good and no signs of Crohn's is present in tests) He has scheduled a colonoscopy early next year to confirm everything is visually good to rule it an actual remission. My next goal for her is to be off of Remicade, I'm not ready to make that move until after the scope. I'm in no way, shape or form saying she is cured, or will never have another flare up or pop up symptom, I'm saying she is stable, happy, enjoying life, not worrying, pain free and most of all...off of the potentially dangerous drugs. Thank you for reading her story, I know it turned out longer than planned but our Crohn's journey has definitely been an adventure.
Sorry, maybe not oil, CBD doses?
12-08-2018, 09:50 PM   #4
Poochie
 
Join Date: Dec 2018
Sorry, maybe not oil, CBD doses?
The CBD oil she takes is from Green Roads World. It was the highest recommended brand for quality and purity. I buy the 550mg bottles and she takes 1ml doses.
12-09-2018, 12:48 PM   #5
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
Welcome to the forum, Poochie. I'm glad to hear that your daughter is doing well. I understand your desire to have your daughter off Remicade, but that's something that I personally wouldn't do, just because once she's off Remicade, she might form antibodies to it, and then she might not ever be able to use it again. Anyway, it's good that you're making your changes to her treatment with the knowledge of her doctor, and that your doctor is monitoring her condition closely with scopes.

I also wanted to add one thing about the Humira shots, even though your daughter isn't on them anymore. You mentioned that you thought her reaction to the pain was a mental thing, but actually Humira shots (until very recently) were some of the most painful out there--even most adults had a lot of trouble with them. The formulation has recently changed, and now the shots aren't as painful, but your daughter would have been using the painful formulation.
__________________
Daughter E (16) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, iron, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
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