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-> Children's Health
amother
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Wed, Feb 21 2024, 2:05 am
. Dr wants to start with remicate infusion but I just read all sideeffects and I cannot function.
If you have Crohns please help me. What meds are out there that I can discuss with md.
What meds are your kids or adults take with crohns? How often? Is it pills, injections, iv infusion? Any side effects you have experienced
Thankyou . ?
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tinyspark
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Wed, Feb 21 2024, 3:40 am
I would look into the Sarno method. It has healed me as well as others. You can read his books as well as hear a class to help you. There is a Rabbi in BP who gives classes on it as a chesed . 718-232-2741 Rabbi Katz.
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amother
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Wed, Feb 21 2024, 4:18 am
tinyspark wrote: | I would look into the Sarno method. It has healed me as well as others. You can read his books as well as hear a class to help you. There is a Rabbi in BP who gives classes on it as a chesed . 718-232-2741 Rabbi Katz. |
Please do not go this route! Crohn’s disease is a serious auto immune disease that cannot be cured with the mind.
Tinyspark, you’re saying u had crohns-evidenced on an mri/colonoscopy- did sarno and now have no crohns on said testings?? The pathophysiology of the disease is that it’s a disease of the intestines and not curable past remission. It physically needs to be addressed.
This is not comparable to chronic pain. I know a girl who went the energy route and ended up in terrible shape.
I totally get you with the side effects. My dh has crohns and we chose Entyvio because it does not come with the side effects remicaid and humera come with. He gets an infusion every eight weeks.
Entyvio is fairly new, meaning 15 years on the market. It goes straight to the gut so that means it’s not going all over the body. Bh we haven’t seen any side effects since he started four years ago and Chasdei Hashem his Crohns is in remission.
Some people go the route of a specialized diet and it really helps them, but I don’t know enough about it to help you with that. U do need to be very committed with the diet.
Hatzlacha raba! And Refuah sheleima !
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tinyspark
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Wed, Feb 21 2024, 4:25 am
Please look into it ..it's not an energy thing. It doesn't hurt to hear about it then decide.
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amother
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Wed, Feb 21 2024, 4:36 am
tinyspark wrote: | Please look into it ..it's not an energy thing. It doesn't hurt to hear about it then decide. |
To clarify I do not think it’s energy. I took the sarno course for my chronic pain. I was making a separate point that crohns isn’t an energy thing either.
Did you have proven crohns and then after doing ONLY sarno get clear scans?
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amother
Moccasin
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Wed, Feb 21 2024, 4:48 am
I know it's a scary time, but the most important thing is to get your child healthy. Then you can follow up with alternative medicine ideas etc.
Are you using a good doctor? Does he come recommended?
It sounds like medical intervention scares you. I can understand that. But there's a time and a place, and this may be it.
You can go to another Dr for a second opinion. And you can ask "are there any more natural options we can consider first" but ignoring the issue will only make it worse.
Crohns can be controlled, and your child can have a normal life. But you need to accept the situation. Bh for medicines that can keep her healthy.
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amother
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Wed, Feb 21 2024, 4:54 am
If you are using a pediatric gastroenterologist you should be able to trust that your child is being given the correct medication. This is what is probably most effective. Every single medication always has a list of scary side effects. Most of them are extremely rare and don’t happen. In case your child is not responding properly to this medication the doctor will prescribe something else but you really should be able to trust your doctor if you want your child to be helped.
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amother
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Wed, Feb 21 2024, 4:56 am
I read and appreciate every response and it gives me much clarity and hope. I am not able to respond individually but I want to say Thankyou
Please keep responding if it resonates with you. It helps me tremendously
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amother
Pear
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Wed, Feb 21 2024, 5:01 am
My husband has been on remicaid (infusions several times a year) for over a decade now with no side effects, he hasn't had a flare up since he was 14 bh. Absolutely no symptoms. He started in his late teens.
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amother
Mimosa
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Wed, Feb 21 2024, 5:03 am
Dh is on infusions now, I’m not sure what medication, could be remicade
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amother
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Wed, Feb 21 2024, 5:37 am
All the medications will have a long list of potential side affects but practically according my doctor and most people I’ve discussed it with in person, they’re not common at all and should not scare you from starting a medication.
Humira is the standard first choice for most people it’s an injection every other week but if they’re suggesting infusions there’s likely a reason they feel that’s the better choice. Not every case of Chrohns is the same.
It is a very overwhelming time and it feels very scary and life altering, and it is. We decided to go for a second opinion to discuss treatment options. We found it very helpful to hear another perspective and get confirmation on the best treatment for our individual situation.
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amother
Olive
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Wed, Feb 21 2024, 5:59 am
My husband gets Remicade every 8 weeks for the past 10 years with no side effects. He started as a teen and went from suffering, missing school, terrible pain, to fully functioning and happy bH. His parents tried all sorts of things to avoid biologics and it's something he's resentful about still- he suffered through pain and was forced to do acupuncture as a 12 year old, when he could have been treated and back in school. I know it's scary to put your child on such an intense regimen but you can help them heal and feel good again
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amother
Honeydew
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Wed, Feb 21 2024, 6:11 am
My brother takes a once a month injection. No side effects AFAIK. He also recently had surgery to repair years of obstructions.
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amother
Firebrick
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Wed, Feb 21 2024, 7:19 am
Remicade has completely changed life for the better. Was a life saver. I have to do my part and trust in H’ about the side effects. All I can do is my Hishtadlus. I've heard of doctors moving quickly to infusions though so you can definitely make sure there aren't less invasive approaches first. I tried a bunch and had more significant side effects from those and quality of life was really not good. 6mp actually worked great for me though, but led to medically induced pancreatitis which went away when off the medication but was no fun at all.
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amother
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Wed, Feb 21 2024, 7:32 am
You have to trust your doctor. You can’t panic every step of the way.
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amother
Mistyrose
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Wed, Feb 21 2024, 7:54 am
amother Firebrick wrote: | Remicade has completely changed life for the better. Was a life saver. I have to do my part and trust in H’ about the side effects. All I can do is my Hishtadlus. I've heard of doctors moving quickly to infusions though so you can definitely make sure there aren't less invasive approaches first. I tried a bunch and had more significant side effects from those and quality of life was really not good. 6mp actually worked great for me though, but led to medically induced pancreatitis which went away when off the medication but was no fun at all. |
My story very similar. 15 years ago when I was diagnosed , many drs went with prednisone, 6mp right away. ( biological meds were only becoming more popular then). Those side effects were awful. But it bh did get Crohn’s under control. Once I was stable started scd diet along with it , worked wonders and slowly weaned from meds.
Had a flare a few yrs later, started remicaid infusions every 8 weeks and bh been wonderful ever since. No side effects, healthy pregnancies, healthy babies bh!
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bnm
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Wed, Feb 21 2024, 9:24 am
We aren't drs who know what is best for your child. If you don't trust the first dr go for another oppinion.
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bnm
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Wed, Feb 21 2024, 9:26 am
I have had family members on various different medications for Crohns. Some tried following the SCD diet and saw a major difference. For others diet change wasn't enough.
For whoever suggested Sarno its not for a leaky pipe. Leaky pipe needs a plumber, not a self help lecture.
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amother
Pansy
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Wed, Feb 21 2024, 9:35 am
My child was very young when diagnosed so we did a course of steiroids and then daily sulfasalazine but my gi said we may need to switch to remicade soon. You should def listen to the advice of your gi, do not go the natural route. And the diet is super restrictive I can’t imagine it working for a child. Hatzlacha!!!
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