Remicade for 9 yr old

[Kim007]

Hi
My 9 year old daughter was diagnosed with Crohn's in November 2012. In the beginning we thought that the skin tags she had were hemorrhoids. Only symptom. Of course never went away. Went to pediatric GI and was told Crohn's. Went for second opinion because I couldn't figure out what Crohn's had to do with the skin tags. New GI has reviewed everything, colonoscopy, Endoscopy, blood and stool results and believes that she has Perianal Crohn's. Made more sense. She is currently taking Asacol, flagyl, and carafate. So far the meds are not taking the pain away from her butt. Every time she has to go to the bathroom, shes starts to cry, curls up in her bed and hides because she doesn't want to go.There is no bleeding, no constipation, no diarrhea. She doesn't complain about her stomach to much. A little gurgling and a little pain every now and then. The new doctor wants to start her on Remicade. Doctor states that my daughters skin tags are not normal for her age. The side effects I have read about Remicade scares me. I don't know if I can put her on Remicade. Any advice???

 

[my little penguin]

My 9 year old is also on remicade . He started at age 8.
The side effects are scary but very very rare.
Most gi's do not even offer remicade unless it is really needed for a child especially a 9 year old.
Unfortunately ibd can be very silent as a disease in some which leads to a lot of damage on the inside before you "see" the damage on the outside.
To put the odds in perspective
Odds of death in a car accident for those under 14 equals 1in 250
Odds of T cell lymphoma for the general population 2 in 10,000.
Those who took and immunosuppressant and then took remicade 4 in 10000.

Taking remicade first without having an immunosuppressant lowers those risks.

Un treated or under treated ibd can lead to an increased risk of prolonged inflammation which results in scaring , strictures , narrowing and possible colon cancer.

Hugs

 

[Jim (POPS)]

My heart goes out to all the young kids that have crohns. I found out I had crohns at age 61 and was mad as hell because I just retired and was mad because it was taking away the years that I had worked for all my life. Well, I don't think that anymore. I see all the young kids that have crohns and wish I could take it away from them . I hurts me so bad to see what they go through. I was mad that I got to live a normal life and get it later on. I am sorry that I thought that way. This is something that a kid should never have to go through. I pray that they find a cure for all the kids. I may not live long enought to se a cure but I pray they will.
Jim.

 

[Kim007]

Looking at the statistics, I agree. It's just I have had a bad experience with doctors and medications. My 11 yr. old was diagnosed with severe acid reflux at 3 days old when she grasp for air while sucking the pacifier in the hospital. Dr. Gave her medicine, but never had any symptoms of reflux once we took her home from the hospital. We never gave her the medicine. 1 month later and did a upper GI on her and no signs of acid reflux. So kind of reluctant based on symptoms and meds.

I have been reading a lot of post and see that a lot of the children have more symptoms. Vomiting, diarrhea, fever, etc. My daughter doesn't have any of that. Only the skin tag pain and little pain in her stomach. ( which could be from her trying to hold her bowel movements due to the pain.) Blood results I'm sure show the signs for Crohn's, but i cant seem to get myself to believe it. I go the the GI tomorrow to discuss the Remicade. Have you ever heard of anyone changing the diet and making sure the stool is soft has help remission without meds?

 

[Jmrogers4]

Jim, you brought tears to my eyes. It is not an easy disease no matter the age. My son and all these kids amaze me with their attitudes and the way they just take on life. They are a blessing.
Kim007 - there are certainly lots of diets out there, the main ones being SCD or Paleo for Crohn's. I can't say one way or the other we tried SCD and Paleo and gave them both up it was too hard for my picky eater and he was so thin as it was and he ate even less on the diets but take a look through the diet and fitness section.
EEN has been shown to induce remission in about 80% of cases within two years of diagnosis but is has not been shown to be successful in retaining remission.
Each person is unique in their presentation of the disease and there is a huge range of symptoms. There is no one size fits all unfortunately nor one medicine fits all.
Best of luck at the GI tomorrow, let us know how it goes.

 

[upsetmom]

My heart goes out to all the young kids that have crohns. I found out I had crohns at age 61 and was mad as hell because I just retired and was mad because it was taking away the years that I had worked for all my life. Well, I don't think that anymore. I see all the young kids that have crohns and wish I could take it away from them . I hurts me so bad to see what they go through. I was mad that I got to live a normal life and get it later on. I am sorry that I thought that way. This is something that a kid should never have to go through. I pray that they find a cure for all the kids. I may not live long enought to se a cure but I pray they will.
Jim.

This brought tears to my eyes..

 

[Dogluv]

hi kim,
I have crohns disease along with severe perianal disease and i understand how much pain your daughter is going through. pain due to perianal disease is the worst pain i have ever experianced.
when i was first diagnosed the first treatment i tried was remicade. It did take away all the pain i had when going to the bathroom, but it didn't work for my crohns, and it caused me to get infection and viruses quite frequentely. so after 3 doses i stopped getting it. i've tried many other drugs for my perianal disease including steroid creams and antibiotics but nothing really made the pain better. i'm currentely on LDN and a gluten free diet and i have had a large improvment in my perianal disease, i don't have pain with bm's anymore. i think it would be a good idea to put your daughter on a diet, like the SCD, because i have found that there was quite a lot of foods that aggravated it and made the pain worse.
what you can do for instant relief until you find a treatment is what i did when i was having excruciating pain every time i had a bm. I applied a large amount of calmoseptine oitment (which can be found at drug stores) 10 minutes before i was going to go to the bathroom and took a warm sitz bath immediatly after. this really decresed the amunt of pain i had, before and after a bm.
I really hope your daughters pain improves soon!
good luck, Larissa

 

[CarolinAlaska]

Kim, I'm so sad to hear about your daughter. That must be very unpleasant. I was very much in denial when I first learned about Crohn's, thinking it wasn't what my daughter has, but the more I learned about Crohn's, the more I am convinced that it is what it is. There isn't really a normal presentation - as many children as we have on the boards here, are the number of different presentations there are and that changes with each new parent who posts. We all eventually find similarities, but there are many faces to Crohn's. I hope that eventually they'll figure out the cause and be able to subtype it and treat it for specific presentations, but for now it is what it is, and we know what we know... I tried lots of diet changes before diagnosis and found many things that helped my daughter, but nothing that fixed the problem. Right now we are trying EEN (exclusing nutritional formula feeding) as it seemed to be the one thing that didn't require the ugly meds. The longer things go on without resolution, though, the more open one becomes to trying the tougher stuff. It's a game of playing the odds, and you want the treatment that is most likely to help with the least side effects or potential detrimental effects for your kids.

Try to listen to your doctor with an open mind. Go willing to here what he/she wants to tell you. Then plan on giving yourself a few days to process the information, do research, etc before making the final decision. You don't want to rush into any decision this big. Coming here to this forum I found to be very helpful to learn more information and sort thoughts.

Best wishes to you and your daughter for good decisions and great outcomes.

 

[Kim007]

Thank you all for the advise and help. I went last night and bought the calmoseptine oitment and told my daughter about it and the others that say they are using it. She got very excited. I will let you kjnow what the doctor says.

 

[Brian'sMom]

Kim, How is your daughter's weight/height? In the beginning (age 6) that was our son's only symptom. I also was resistant to meds...only focused on diet cause I didn't think he needed medicine. When he turned 10 he had more pain symptoms...but his main one has always been his small size. I always wonder now if I had been more receptive during the years he had little symptoms if he'd have grown along with all the other kids. (One little example was; his shoe size stayed the same for a year and half)

 

[Kim007]

Kathy,
Her weight went down when the 1st doctor put her on Flagyl and Ciprofloxacin. She started to get depressed, she looked very pale, had diarrhea and lost about 3 to 4 pounds. My husband and I along with the opinion of her pediatrician decided to stop giving her off meds until she had the colonoscopy and endoscopy to confirm Crohn's. She started to gain her weight back and became herself again. She went without meds for about a month and we kept the stool soft and had her drinking all natural juices, such as Spinach, Carrots, beets, etc. that my husband actually juiced along with regular food. We did cut the dairy. She started drinking almond milk and cut out the cheeses, etc. She seems to respond well to that. Then the new appt. with the second doctor came and she is the one who told us that we needed to be concerned about her growth. She is currently on Flagyl and Asacol, along with a probiotic, so as of right now we are in that stage of having to monitor her growth. I go to see the doctor today to discuss what is to come next.

 

[Jenn]

Welcome Kim. Sorry to hear about your daughter. My son too also presented with skin tags and fistula, which led to his Crohn's diagnosis. Remicade can help close up and prevent fistulas and skin tags. It worked great for my son and (knock on wood), he has not had a new one since starting biologics. Best of luck to you and her.

 

[Kim007]

Jennifer
Did the skin tags go away or did the pain just stop? Have you had issues with the stool being hard and caused any pain?

Kim

 

[Sascot]

Hi, sorry to hear your poor daughter is suffering. It must be awful struggling to go to the toilet when it is not something you can avoid.
My son has peri-anal Crohn's and currently has a fistula (had a large abscess that required antibiotics and surgery) and thankfully isn't in pain, but it was horrible last year.
I am surprised your daughter is on Asacol - when speaking to our GI I mentioned Asacol as it didn't seem to have as many side effects and he said it would not help peri-anal disease at all. We have just started 6mp (mercaptopurine) as this has around a 50% chance of helping fistulas in the bottom. However, if things got worse or didn't work, then our next step would be Remicade as this has a reasonable record of helping.
Has your daughter been referred to a surgeon at all? If not it might be worth getting a consultation to have at least some sort of plan for getting rid of the skin tags if the meds don't work. I know surgery is scary (I was terrified when my son went in), but although it was a bit painful afterwards, it was so worth getting rid of the part of his bottom that was causing him pain and since his surgery he has been great (fingers crossed it keeps that way)

 

[CarolinAlaska]

Kim, how did your visit with the doctor go today?

 

[Kim007]

Ok, got all the way to the doctors parking lot to have my phone ring and be told that the Dr. needed to reschedule. So I am waiting for a phone call from the Dr. to see what she want me to do with her meds. SO heres my question, I am like all new moms and do not want to keep giving her the Meds. My husband has read numerous books on diets for Crohn's, which im sure alot of other people have done. Such as the Makers Diet . Has anyone actually tried it?

Kim
Mom to Lacee

 

[CarolinAlaska]

I can't say that we've done any of the diets full-on. When I was in your shoes trying to decide whether to go the medical pathway or try the diets, I eventually came to the conclusion that we'd been trying many diet changes for years without being able to fix her, and that it was unlikely that any diet would work for Jaedyn without medical intervention first. We'll probably end up going to some form of some diet (besides her gluten free diet) after her EEN, but right now, I just want to get her better quickly.

 

[my little penguin]

Kim-
Some facts to keep in mind .
The younger the age typically means the worse the Ibd will get.
Ibd left under treated tends to cause complications in kids quickly.
The disease spreads quickly over ten years in children. Adults the location tends to be the location.

No mom wants to give meds.
Diets have there place but please discuss any med change with your Gi first and ask what in their opinion would happen if you dropped the meds.
Get your child to remission first
Then if you and your doc decide it would be ok to try diet only .
We have tried many different food diets prior to dx and a few afterwards with meds just trying to get to remission.
For DS they did not work.
I highly recommend EEN
For any kid with Ibd .
It is the only scientifically proven diet to induce remission in kids and helps the weight/growth.

 

[izzi'smom]

DD was four when we tried Remi. While it didn't work for us, I would absolutely try it again.
I was resistant also. It's so hard to read page after page of side effects and imagine the worst for your child. It was more difficult to watch my four year old sit in my lap at a birthday party because she was in so much pain she couldn't get up and play. Her quality of life was deteriorating.
I agree with MLP that you should consider getting your little one into remission before going with diet modification. I am partial to PALEO, which we follow in the summer months. Don't overlook that you can try diet modification in conjunction with Remicade if you so choose (I did EN via ng in conjunction with Remicade...dd was losing weight and the EN helped stop the weight loss).
Wishing you luck!!

 

[Nancy McC]

Hi Kim,

I want you to know about the great success we've had with Remicade over the past six years. My son, now 14, was diagnosed with Crohn's at 8. We were fortunate that we "caught" it (relatively) early -- but only after some very serious weeks of illness and a swift weight loss (9 pounds in several weeks). We initially went the Prednisone route + Pentasa, then to Imuran (which made him vomit) and still, pain and inflammation, which ended with a weekend-long hospital stay during which we determined Remicade would be the right way to go. Man, was it ever.

It took the better part of a year to get his disease entirely under control, but once we started Remicade, and later added Methotrexate, it was all downhill from there. My son's an incredibly happy, healthy and (dare I say) chubby high school freshman, far from the skeletal 3rd grader he was when he was diagnosed. We eventually went off the Methotrexate (because his liver numbers were up, and for too long), but he has had no inflammation (knock wood!) for 5 years and I can not say enough wonderful things about how Remicade is keeping him in remission.

That said: it's not the Wonder Drug for every kid. Sometimes it doesn't work, and I know that with some folks it goes along swimmingly -- then fails. I also have an adult friend who spent 16 years in pain with Crohn's until he started Remicade infusions seven years ago. He can't believe how healthy he's been (and, in fact, insisted I look into Remicade initially). For him, it's also a "Wonder Drug."

We have a stellar doctor at Seattle Children's who keeps a very close eye on my son, and an even closer one on the various drug options for Crohn's kids. I, like you, was exceedingly nervous about Remicade initially, as was my husband, but after 6 years, we're happy to say our son has become a regular poster child for Remicade treatment, and other than his every-eight-week visit to the hospital for an infusion, you'd never know he had a chronic illness. And he is also able to eat anything (and everything -- including his beloved broccoli, go figure!) that he wants.

My heart goes out to you, and to your daughter. I wish you great good luck with her treatment, and hope that someday, very, very soon, she's well and whole.

 

[Nancy McC]

Deleted

 

[Kim007]

Thank you all for the advice ! I will definitely keep it in mind. As of right now until I hear back from the Dr. or Lacees next visit March 14, I am going to try the juicing, her meds, miralax, and the sitz bath. I want to see how she does with the juicing and reg. foods minus the diary. It's only 2 weeks but gonna try until next Doctors visit. Will keep you posted.

Thank you all again, reading all your post has help me understand alot. It's just so hard because every child is so different with this disease.

XOXO

 

[CarolinAlaska]

It sounds like a good plan, and very healthy too . There is a steep learning curve with Crohns, especially when first diagnosed, but this board is a big help. I hope Lacee does well with all the positive changes you are making for her.