Wow it's been 4 years since my daughter 12, has been diagnosed with Crohn's. Sometime I try to pretend its not there, but this terrible disease is always there. I feel we live one day at a time we never know how she is going to feel. Shes a Gemini stress ball I love her so much as so many of you are going through the same thing I wish it would go away
My daughter had diarrhea and stomach pains summer of 2009 on vacation. Well the diarrhea didn't go away. We then went to Ped GI and Julianna had her first colonoscopy and endoscope. The doctor said colitis. Told us to start by adding probiotic vsl#3, broswellia and rice powder. And a new diet gluten and diary free. Well the next visit we started asacol and mp3. After a few weeks my daughter had a 104 fever for 5 days, after no response from her doctor I brought her to the emergency room they gave her iv antibiotics and said she was allergic to the medicine. After the doctor took a few days to respond I was done with her.
The next doctor we went was in the grassland Westchester, she said my daughter had crohn's colits. Now that is a huge difference from what the original doctor had told us. My heart was broken for my sweet young daughter. She told us she can have gluten and dairy and we tried pentasa. She also wanted my daughter to take mp3 again, but after reading the side effects that was not something we wanted to try. Again Julianna had a terrible side effect to this drug. Everyone you know what the famous drug they always push remicade. I can't do it I told her, so she replyed well then I can no longer treat Julianna.
I had enough of all these drugs, And I was not sure what my daughter had after over a year going to these doctors. I decided to go natropath.
Weve been to a few Natropath in the Hudson Valley, but there over priced and I'm not sure if there very good. For a whole year my daughter and I didn't eat gluten or wheat everything oraganic nothing out of a box and Julianna did very well. Adjusted by a chiraproctor onece a week and accupunctor treatments weekly. She was doing really well. But she was stressed many times when partys came and so on ( the food situation). Well the natropath told us we still needed to have a Ped gastr just in cause Julianna ever needed to be put in the hospital. Also doctor recommended for us to get a water test the house rental had ecoli and coliform in the water. I'm not sure if this was the cause but I believe it is part of it, she also was on antiobictic many times when she was a baby for ear infection. Aso my daughter is half Jewish, and they say Jewish have a high percentage rate of getting crohns from MAP in Cow milk.
So I found one she suppose to be nice and not one of the pushy doctors, but I was wrong. Julianna crp was down to a 14 that was really good no stomach pains ect. Well the doctor wanted to give julianna a colonoscopy and endo and it came back moderate crohns colitis polups granolums and one large ulcer, she said she needed to be on remicade it's the wonder drug. Sure its the wonder drug now, but what about when my daughter grows up and has worse problems and cant have kids and your no longer her doctor because she will be an adult you don't see all the problems these children face latter in life. Once again the doctor would no longer treat julianna unless remicade
Now weve been seen by Julianna pediactric md that also studies holistic meds. IT's been a tough year and a half. She been taking LDN for over a year and takes Predisone once in while when things get real tough. She never 100 percent. We tried pentasa again. It gave her real stomach pains again. I spoke to her doctor and he said maybe we should start thinking about infusion drugs.
Here we are again I try to remember what worked and what didn't.
Julianna currently taking
4 mg of LDN
krill oil
probiotic mindlinx
glutamine 6 grams
wobezyme 6 every morning
sam-e 400 mg for anxiety
reshi mushroom or slippery elm go back and fourth
Current diet grass fed meet organic fruits and veggies gluten and dairy free
tried carnivora dmso vsl #3 colostrum flower water (bach flower) msm aloe
digestive papaya enzyme pentesa Asacol mp3 predisone antiobiotic for fistulas
Past diets scd diet
My daughter had diarrhea and stomach pains summer of 2009 on vacation. Well the diarrhea didn't go away. We then went to Ped GI and Julianna had her first colonoscopy and endoscope. The doctor said colitis. Told us to start by adding probiotic vsl#3, broswellia and rice powder. And a new diet gluten and diary free. Well the next visit we started asacol and mp3. After a few weeks my daughter had a 104 fever for 5 days, after no response from her doctor I brought her to the emergency room they gave her iv antibiotics and said she was allergic to the medicine. After the doctor took a few days to respond I was done with her.
The next doctor we went was in the grassland Westchester, she said my daughter had crohn's colits. Now that is a huge difference from what the original doctor had told us. My heart was broken for my sweet young daughter. She told us she can have gluten and dairy and we tried pentasa. She also wanted my daughter to take mp3 again, but after reading the side effects that was not something we wanted to try. Again Julianna had a terrible side effect to this drug. Everyone you know what the famous drug they always push remicade. I can't do it I told her, so she replyed well then I can no longer treat Julianna.
I had enough of all these drugs, And I was not sure what my daughter had after over a year going to these doctors. I decided to go natropath.
Weve been to a few Natropath in the Hudson Valley, but there over priced and I'm not sure if there very good. For a whole year my daughter and I didn't eat gluten or wheat everything oraganic nothing out of a box and Julianna did very well. Adjusted by a chiraproctor onece a week and accupunctor treatments weekly. She was doing really well. But she was stressed many times when partys came and so on ( the food situation). Well the natropath told us we still needed to have a Ped gastr just in cause Julianna ever needed to be put in the hospital. Also doctor recommended for us to get a water test the house rental had ecoli and coliform in the water. I'm not sure if this was the cause but I believe it is part of it, she also was on antiobictic many times when she was a baby for ear infection. Aso my daughter is half Jewish, and they say Jewish have a high percentage rate of getting crohns from MAP in Cow milk.
So I found one she suppose to be nice and not one of the pushy doctors, but I was wrong. Julianna crp was down to a 14 that was really good no stomach pains ect. Well the doctor wanted to give julianna a colonoscopy and endo and it came back moderate crohns colitis polups granolums and one large ulcer, she said she needed to be on remicade it's the wonder drug. Sure its the wonder drug now, but what about when my daughter grows up and has worse problems and cant have kids and your no longer her doctor because she will be an adult you don't see all the problems these children face latter in life. Once again the doctor would no longer treat julianna unless remicade
Now weve been seen by Julianna pediactric md that also studies holistic meds. IT's been a tough year and a half. She been taking LDN for over a year and takes Predisone once in while when things get real tough. She never 100 percent. We tried pentasa again. It gave her real stomach pains again. I spoke to her doctor and he said maybe we should start thinking about infusion drugs.
Here we are again I try to remember what worked and what didn't.
Julianna currently taking
4 mg of LDN
krill oil
probiotic mindlinx
glutamine 6 grams
wobezyme 6 every morning
sam-e 400 mg for anxiety
reshi mushroom or slippery elm go back and fourth
Current diet grass fed meet organic fruits and veggies gluten and dairy free
tried carnivora dmso vsl #3 colostrum flower water (bach flower) msm aloe
digestive papaya enzyme pentesa Asacol mp3 predisone antiobiotic for fistulas
Past diets scd diet