Toddler with crohn's

[maddie's parents]

toddler with crohn's

Hello everyone,

Our little girl just turned 3 in March, 2012, and was diagnosed with Crohns at age 2 1/2 years old. She had lots of bloody diarrhea so we brought her to the pediatrician. He ordered lab work on her and all of it came back abnormal. He referred us to a pediatric GI and she had a colonscopy performed. The GI called and said the pathologist confirmed it was Crohns. We have had a second opinion and have been told it's definitly Crohn's Disease. We have been told her Crohn's is very aggressive and the Dr. is having a hard time treating her. She has been on prednisolone for eight months. Each time she is almost off of it, she relapses. She had been on Pentasa and is currently taking Apriso. We were hoping that the Apriso was going to work but she is having stomach cramps again with bloody stools and some diarrhea. We feel a relapse is coming soon. She has also tried Imuran but had an allergic reaction to it and was in the hospital for 5 days because of it. We have been told she can never have Imuran or 6MP again in her life. The last time we met with the GI Dr. she told us she wanted to try IV treatments of Remicade on her if she should relapse with the Apriso. We have started researching Remicade on the internet and are fearful of having her take the medicine. From what we have read, it is our understanding that children taking Remicade for 30 months or longer are at higher risk of developing Lymphoma and sometimes Leukemia. We have a 5 year old daughter that was diagnosed with Leukemia at age 3 1/2. She is almost done with treatment and is doing great but our fear is that our 3 year old with Crohn's could develop Lymphoma or Leukemia. A large part of our 5 year olds treatment for Leukemia is 6MP and we are so scared that if our 3 year old develops cancer that she would not do as well with treatment since she can never have 6MP again in her life. We have an appt. made to met with the GI Dr. in two weeks to discuss our fears. We want to discuss with the GI Dr. the option of having surgery to remove the Crohn's instead of starting a new medicine. We are wondering if anyone else's child has had surgery for Crohn's at such a young age and how are they doing now?

Thank you,
Maddie's parents

 

[willsmom]

Welcome Maddie's parents,

Sorry you are going through such a tough time - with both your kids but I am glad your older daughter is doing well after her treatment.

I have no experience with Crohn's in such young children but have recently joined the Remicade fan club. My son is much older but was also an aggressive case, very sick and we had much difficulty getting him off of prednisone. He is finally doing much better after starting Remicade this year.

You probably found in your research that the risk of developing cancer from taking Remicade is quite small, but I think you are right to express your concerns to your GI when you see him next - and maybe speak to your other daughter's oncologist - to put to rest any other concerns you have about complications of treatment from Remicade.

Hopefully, you will soon find the right treatment for your little one that gives her some long term relief.

 

[izzi'smom]

Hi parents of Maddie!

First off, (((HUGS))) You have been through an amazing journey already, and not in a good way. I am glad that your 5 year old is doing great.

My daughter was 3 when her symptoms appeared. I am guessing your dd disease is in her large intestine?
I would absolutely discuss your concerns re: already increased ca risk with your physician.
I considered these risks when giving my daughter Remicade, and again when putting her on Humira. (I actually got a second opinion before trying Remi). This being said, the doc that gave us the second opinion told me that she would probably have her colon out within four years. It has been ten months and we visit the surgeon next week. THis is after an exhaustive regimen of medications that didn't help. I, personally, had to exhaust these options before resorting to surgery. I considered how she would feel later in life knowing that I made this decision for her. At this point I am comfortable with the decision because her quality of life is so poor. We have been told multiple times that children presenting with her type of disease (pancolitis; or UC-like-Crohns; where the large intestine is severely inflamed but there is no sign of the disease elsewhere) tend to do very well post-op.
This being said, please consider that surgery is not a "cure" for Crohns...it can come back from mouth to anus anytime. You may remove the problematic colon only to have the disease return elsewhere...
I think it is a personal decision...not the same thing works for every family-but you are on the right track discussing it with your doc and I would also discuss it with your other dd's oncologist.

Mary (myreinhard) has a 3 (?4) year old that had a colectomy last month...maybe she'll pop in here.

Either way, best wishes!!

 

[Astrid]

Hi Maddie's parents,
I want to welcome you to the forums (I am also very new) and send out my sympathies because both of your children's disorders. I can understand your fear about hte Remicade, and since your daughter seems to relapse everytime you try to wean her off a medication, I can understand why she'd have to be on it longer-term. I have no knowledge of any of the issues you describe since I am very new myself, but I wanted yo say I think of you.

 

[Tesscorm]

Hi Maddie's Parents,

I also want to welcome you to the forum. I am so very sorry to hear of your struggles with your children's illnesses. :ghug: But, am glad your older daughter is doing well.

I don't have any experience regarding surgery or even the medications but do agree that you should certainly discuss your concerns with your daughters' GI and oncologist.

I just wanted to mention my son's treatment, it may be something to consider?? - he has been treated with Enteral Nutrition (EN) since his diagnosis last year. The formula provides the necessary nutrition and has anti-inflammatory properties. In children, it has a comparable success rate at inducing remission as do steroids. However, my understanding is that its success rate is greater if the crohns is affecting the small intestine, not the colon. There are absolutely no negative side effects and will alleviate concerns re nutrition, growth, etc.

It is commonly the first treatment option for children in Europe and seems to be fairly common in Canada as well (it was the treatment immediately recommended to us by our GI at the hospital). It is not offered/suggested as often in the U.S., the reason seems to be the expectation of patient non-compliancy. My son's initial treatment was 6 weeks of the formula, ingested through an NG tube overnight with no other food (except for clear liquids - broth, jello, etc.) His maintenance treatment since then has been the same formula but at 1/2 dose only 5 nights per week (with a regular diet now); his only medication has been an antacid. (There are also drinkable versions of the formula.) My son does have random bouts of minor symptoms so, perhaps, not in complete remission, however, it seems to have kept inflammation under control for the last year.

There is a subforum for EN under the Treatment section, as well, there is quite a bit of information regarding EN in this forum. But, please also feel free to just ask any questions.

I'm glad you found our forum - there are some wonderfully supportive members and parents on this forum with lots of experience and knowledge - they have been invaluable to me!

Sending best wishes to your family! :ghug:

 

[Farmwife]

Good afternoon to Maddie's Parent.
I'm very new here also. How is your little ones doing today? So sad to here all the troubles. My Grace is 3 and undiagnosed. She has crohns like symptoms. I pray we'll find out in the next couple months. You came to the right place. Very friendly and knowable people here. They've given me great advice. The best part is I didn't have to pay $200 an hour and wait 2 months to get an apt..
Hang in there,
Farmwife

 

[Suzysu]

Maddies parent's - Oh My goodness - I am in tears after reading your post - It puts my worries into perspective - You have been through so much - I'm afraid I have no advice to offer - but just hope that you find some answers soon, I will keep your little ones in my thoughts.

 

[Sascot]

So sorry to hear about your little one. I'm glad you're older daughter is getting better - what a lot you have to deal with! I'm afraid I don't have much experience with the meds side as we are just starting out on that journey :thumbdown:. As alot of us agree EN is definately worth trying out. At least it gives the bowel a rest and a chance to heal. Good luck with whatever road you take! I know how difficult the decision is as I have struggled with the worry of the side effect of cancer in my son's drug. We can only try our best with the knowledge we have.

 

[maddie's parents]

Hello everyone,

Thank you for the warm welcome and all the information. I will be discussing these different medicines and the Enteral Nutrition treatment with the GI Dr. at the next appt.

@ Willsmom, I'm glad your son is responding well to Remicade and is doing good with treatment.

@ Angie, your daughter is beautiful. I'm so sorry to hear that the medicines are not working and your already at the surgery point. Is your daughter's entire large intestine infected or just a certain section? Maddie's large intestine is infected and her small intestine is fine. When the Dr. did the colonoscopy her colon was so inflamed the Dr. was not able to get very far up. The Dr. was talking about doing another one this month to find out how much of her large intestine is infected with Crohns. Please keep us posted about your daughter's Dr. appt. next week.

Our 5 year old has treatment next week for her Leukemia so I will be discussing the Remicade with the Oncologist.

Thanks again everyone. I appreciate all the information you have given to me and the well wishes. I will let you know what the Oncologist and GI say about treatment. We meet with the GI on May 15th.

Jennifer

 

[imaboveitall]

God love you guys, what a nightmare.

I think Angie's (Izzi'sMom) post is excellent. I myself am a fan of surgery for those with confined area of disease, particularly colon as living without one doesn't compromise absorption/ nutrition as small bowel removal can.

No easy answers for any of us, but those for whom surgery is an option, I envy them.

Best of luck and keep us updated.
:ghug:

Aside to Farmwife: free therapy, aint it great? :thumleft:

 

[izzi'smom]

Hello everyone,

Thank you for the warm welcome and all the information. I will be discussing these different medicines and the Enteral Nutrition treatment with the GI Dr. at the next appt.

@ Willsmom, I'm glad your son is responding well to Remicade and is doing good with treatment.

@ Angie, your daughter is beautiful. I'm so sorry to hear that the medicines are not working and your already at the surgery point. Is your daughter's entire large intestine infected or just a certain section? Maddie's large intestine is infected and her small intestine is fine. When the Dr. did the colonoscopy her colon was so inflamed the Dr. was not able to get very far up. The Dr. was talking about doing another one this month to find out how much of her large intestine is infected with Crohns. Please keep us posted about your daughter's Dr. appt. next week.

Our 5 year old has treatment next week for her Leukemia so I will be discussing the Remicade with the Oncologist.

Thanks again everyone. I appreciate all the information you have given to me and the well wishes. I will let you know what the Oncologist and GI say about treatment. We meet with the GI on May 15th.

Jennifer

Hi Jennifer!

Her entire colon. I believe they will tell me she will have a permanent ileostomy when we go next week, but I will post again when I hear more. Her small intestine, investigated with a partial scope (they can only see the very end via colonoscopy and beginning via endoscopy) and a MRE (or MRI enterogram) is clean, and mild gastritis is her only other issue (which may/may not be Crohn's related). She did have some trouble with nausea/vomiting last year, which can signal small bowel strictures but can also be caused by severe bowel inflammation. One of her biopsies came back positive for a granuloma, which is the only reason she has been diagnosed with Crohn's and not UC. HTH and keep us posted after your appointment!

 

[polly13]

Hi Maddiesparents
I am so sorry to hear about your both your daughters I can only imagine what you must be going through. Lucy my 3 year old daughter was diagnosed with chrons at age 2.5 but her disease is peri-anal so there is no colon involvment at the mo so surgery is not something we have discussed yet. We have however last week have had the remicade conversation last week as 6mp doesnt seem to be working for us and yes it is a really difficult decision particularly as the advice is that once they start on it, coming off it is difficult. I think you have got great insight from Izzis Mom in her posts,

I think it is a really personal decision and as no two children are the same only you can make it and I really understand how difficult this decision is and 100,000 what ifs that go round in your brain as you are trying to rationalise you toughts and take in all the information. For us we have decided to go with the remi because we dont feel we really have any other option.

I wish you the very best

 

[DustyKat]

Hi maddie's parents and :welcome:

First up...:hug::hug::hug:...what a traumatic time you have had in the last couple of years. It is wonderful to read that your older is doing well, bless her. And now your little one, you are no doubt wondering does it ever end.

Did your daughter develop pancreatitis, or some other side effect, or was it an actual allergic response to the Imuran?

Did she have a TPMT test before commencing the drug?

If it was a side effect then research has indicated that having issues with one drug doesn't necessarily mean you will the same side effects with the other drug. The fact that your older daughter tolerates 6MP well may mean that 6MP is a better choice for your younger daughter. Plus you can give these drugs at lower dosages if Allopurinol is added. Just a thought.

I hate to say it but from your description and the fact that the doctors said it aggressive then I doubt Apriso will do much, if anything. Since they have ruled out Imuran/6MP have they mentioned the other immunosuppressant, Methotrexate?

I know you are between a rock and a very hard place with the Remicade but it may well be the lesser of two evils when you have been on Pred for so long. Pred is a fab drug but just not in the long term.

My two were teenagers when diagnosed and have terminal ileum disease. There crohn's was aggressive and they developed complications early on so surgery was their only option. They have both done very well following it though and have stayed in their surgically induced remission.

Good luck hun. I wish you didn't have to face this heartbreak again and have the awful decisions that go along with it. :ghug:

Dusty. x:heart:x:heart:x

 

[maddie's parents]

Hi Jennifer!

Her entire colon. I believe they will tell me she will have a permanent ileostomy when we go next week, but I will post again when I hear more. Her small intestine, investigated with a partial scope (they can only see the very end via colonoscopy and beginning via endoscopy) and a MRE (or MRI enterogram) is clean, and mild gastritis is her only other issue (which may/may not be Crohn's related). She did have some trouble with nausea/vomiting last year, which can signal small bowel strictures but can also be caused by severe bowel inflammation. One of her biopsies came back positive for a granuloma, which is the only reason she has been diagnosed with Crohn's and not UC. HTH and keep us posted after your appointment!

Hi Angie,

It sounds like you have been through a lot the last ten months with the Crohns. Maddie was also diagnosed with Crohns because her biopsy tested positive for a granuloma. When the GI was done with the colonoscopy she thought it was going to be UC. My father was diagnosed with UC in his late 40s. The GI said it was the worst case he ever saw. My father had his colon removed and now has the J Pouch. My father suffered years with UC but now has his live back because of the J Pouch. He is able to go golfing again and live his life like he did before UC. I know people with Crohns can not have the J Pouch because the Crohns can come back and attack it. I couldn't believe it when the GI called and told me that my daughter had Crohns and not UC. I was so sad for my daughter.

 

[maddie's parents]

Hi Maddiesparents
I am so sorry to hear about your both your daughters I can only imagine what you must be going through. Lucy my 3 year old daughter was diagnosed with chrons at age 2.5 but her disease is peri-anal so there is no colon involvment at the mo so surgery is not something we have discussed yet. We have however last week have had the remicade conversation last week as 6mp doesnt seem to be working for us and yes it is a really difficult decision particularly as the advice is that once they start on it, coming off it is difficult. I think you have got great insight from Izzis Mom in her posts,

I think it is a really personal decision and as no two children are the same only you can make it and I really understand how difficult this decision is and 100,000 what ifs that go round in your brain as you are trying to rationalise you toughts and take in all the information. For us we have decided to go with the remi because we dont feel we really have any other option.

I wish you the very best

Hello,

I'm sorry to hear your little Lucy is also suffering. It is so hard to watch your children suffer. I hope she finds some relief with the Remicade. I wish you the very best as well. Thank you for the well wishes. I will keep everyone post.

 

[izzi'smom]

Our stories sound similar...
We went from thinking she had a c diff infection (completely treatable illness) to coping with a UC diagnosis. I was hardly done digesting/researching UC when the biopsy was back and it changed to Crohns. Those early days were tough (we have no IBD link, but other autoimmune disorders in my family), but I am OK with the point we are at right now. (Stressed beyond belief, but accepting of what needs to be done in the hopes that her life will drastically improve).
I will keep you posted and am looking forward to hearing how your appointment goes...good luck!

 

[maddie's parents]

Hi maddie's parents and :welcome:

First up...:hug::hug::hug:...what a traumatic time you have had in the last couple of years. It is wonderful to read that your older is doing well, bless her. And now your little one, you are no doubt wondering does it ever end.

Did your daughter develop pancreatitis, or some other side effect, or was it an actual allergic response to the Imuran?

Did she have a TPMT test before commencing the drug?

If it was a side effect then research has indicated that having issues with one drug doesn't necessarily mean you will the same side effects with the other drug. The fact that your older daughter tolerates 6MP well may mean that 6MP is a better choice for your younger daughter. Plus you can give these drugs at lower dosages if Allopurinol is added. Just a thought.

I hate to say it but from your description and the fact that the doctors said it aggressive then I doubt Apriso will do much, if anything. Since they have ruled out Imuran/6MP have they mentioned the other immunosuppressant, Methotrexate?

I know you are between a rock and a very hard place with the Remicade but it may well be the lesser of two evils when you have been on Pred for so long. Pred is a fab drug but just not in the long term.

My two were teenagers when diagnosed and have terminal ileum disease. There crohn's was aggressive and they developed complications early on so surgery was their only option. They have both done very well following it though and have stayed in their surgically induced remission.

Good luck hun. I wish you didn't have to face this heartbreak again and have the awful decisions that go along with it. :ghug:

Dusty. x:heart:x:heart:x

Hello Dusty,

Yes my daughter developed Pancreatitis from the Imuran. The GI said it was an allergic reaction from Imuran. The GI told us our daughter could never take Imuran again or 6MP because they are in the same family. We were told if you are allergic to one you are allergic to both.

Yes, our daughter had the TPMT test before starting Imuran. We were told the lab work showed she was going to respond well to Imuran and 6MP but that was not the case. The GI did mention Methotrexate. She told us she could receive a shot of Methotrexate once a week but did not think it was going to work on her because she has an aggressive case of Crohns. I was going to discuss the Methotrexate shots with the GI at our May 15th appt. as well.

It sounds like you have also had your hands full dealing with two children with medical conditions. I'm glad to hear they are both doing well now. I will keep everyone posted after our appt. on May 15th.

Jennifer

 

[DustyKat]

Good luck with the appointment Jennifer. I hope you are able to find a treatment plan that is right for your little one and she is soon feeling on top of things again. :hug:

Dusty. xxx

 

[QueenGothel]

Sorry I am so late with my response. I am sorry to hear all your family has been through.

My little girl Rowan was diagnosed with UC (Oct 2011) and recently had the ileoanal reservoir surgery and she feels great. Honestly I can't offer advice about surgery. Even though the pathology report came back UC from the colectomy. Ro still has to reconnect to her J pouch. The Crohns fear is still very real to me. I don't think that will ever go away. You will get through this and you will do the right thing for her and your family. As a parent you just want to make it go away. My heart is so broken knowing your little one has such an aggressive case of Crohns. Has anyone mentioned LDNscience.org to you? I know they treat certain cancers, crohns, and all sorts of auto immune diseases. It doesn't work for everyone but when you said cancer and crohns that popped into my brain.

Our life is way better as of days after her surgery April 17 2012. In the beginning, she went from mild colitis to complete colitis when the medications (5 asas) made her worse not better. We did take the remicade plunge and even though she didn't achieve remission. At the time it was... hope Remicade stops the bleeding so we can buy some time to get her healthier for surgery. Ro was getting blood transfusion frequently... She had 5 total in 3 months. Also before Remicade she was severely malnourished and lost lots of muscle mass from remaining in bed for too long. She was hospitalized for 32 days. The Remicade made her bleeding slow down to get her able to have surgery. At that point we were just wanting the pain to go away and I was fearful for the worst thought imaginable. If the remicade did nothing to help it would indeed complicate the surgery more, due to her immune system being so bad. She has been on predisone since Oct 2011, we are still weening. Two weeks after her last infusion she needed yet another blood transfusion. We decided on the surgery bc we knew her life would be better. We had to wait 6 weeks after her last infusion before surgery would be consider safer. We originally had a bad scope also, we did this plunge not having really much clue what her small intestines looked like. The surgeon looked for crohns while creating the J-pouch and an MRI was clear. Still not breathing.

It sucks when people say thing happen for a reason, they haven't walk a mile in our shoes.


I'll pray for Maddie and your family.

 

[QueenGothel]

I was just checking back. Wondering how things are going?

 

[maddie's parents]

I was just checking back. Wondering how things are going?

Hi Myreinhard,

It sounds like your little girl has been through so much. It is so hard to watch your children in pain. I'm glad she is doing well now. I hope everything goes well with the J Pouch. My father had UC and has the J Pouch. He is doing great and finally has his life back. He can play golf again and enjoy life the way he used to before UC.

Sorry it has taken so long to post my response. I have been very busy. We spoke with my 5 year old daughter's oncologist about our fears of Remicade. He did not seem to understand our concerns and his response was not comforting at all. He told us text book says a sibling with cancer is at greater risk of developing cancer but he has never seen it in the 20 years he has been practicing medicine. He told us twins are a different story but he felt Maddie's risk of developing cancer from Remicade is low. He also told that the chance of our 5 year old having Leukemia was 1 in 3 million. I told him the chance of Maddie having Crohns at age two was not common either. I believe it's 2%. We asked the oncologist if Maddie should develop Leukemia then how would it be treated since she is allergic to 6MP. He told us they would use a different protocol. We asked what it would be and he did not know because he told us they do not follow or study chidren that are allergic to 6MP. He told us it's very rare to have a child with Leukemia that is allergic to 6MP. I told him we have two children with rare conditions and we are scared of the rare since it has happened to us twice. He did not seem to understand our concern at all. Did not leave the conversation feeling satisfied at all. We left feeling worse.

The following week we had the conversation with the GI about our concerns about Remicade. She understood our concerns. We agreed to proceed with shots of Methotrexate instead of starting Remicade or Humira if Maddie should relapse. We have been told the shots of Methotrexate do not increase the risk of cancer. Maddie has seemed to pull herself out of the relapse but she is still being weened off Prednisolone. We shall see how she does once she is completely off the Prednisolone. We are going to have another colonoscopy on Maddie along with an MRI / MRE. She was so inflammed with the first one that the GI was not able to get very far up so we don't know how much of her colon is affected with Crohns. We asked the GI if a small portion is affected with the Crohns then could we have that section removed. She told us that could not be done because the inflammation would just spread and then there would be scar tissue issues and the more surgerys the more scar tissue. I thought I have read about other people having sections of their colon removed to relieve the Crohns. We also asked the GI about Enteral Nutrition and she told us that works better for patients with Crohns in the small intestines. She did not think that would be an option for Maddie. We have another appt. with the GI for June and Maddie's colonoscopy and MRI /MRE are supposed to be in the process of being made by the hospital. I will let you know what happens after the colonoscopy and MRI /MRE. It should be soon.

Jennifer

 

[QueenGothel]

Jennifer, thanks for the update. I wish your family well. You are in my thoughts. Take care.

 

[Farmwife]

Wishing you all the best.
Your in my thoughts and prayers.


Farmwife

 

[Sascot]

That's good that she is responding to the Methotrexate. Hope the MRI and colonoscopy goes well

 

[JacksParents]

Jennifer,

My thoughts are with you; you are not alone in this experience. It is terribly difficult choosing between various evils, especially when NO clinician has a lot of experience with children so young and large-scale studies don't exist, either. Hope that today is a good day.

Best,
Eric

 

[DustyKat]

Thanks for the update Jennifer, what an awful time you have had with the oncologist.

It is good to hear that the GI is more understanding but I don't agree with her on the EN aspect of things. Yes, EN does probably have the best results with Ileal disease BUT it can also have very good results with large bowel disease too. The biggest question with EN and its effectiveness is not so much with Crohn's and its location but whether it is effective when used with UC patients.

Surgery is considered a last resort by most but if clinically indicated...stricture, fistula, perforation...that are not responding to treatment or are beyond being treated then it will be done as you can see from my signature above somewhere! :lol: Two other types of surgery that don't involve resections are stricturplasty and then there is always the consideration of a temporary stoma for some to allow for healing further down in the bowel if medication treatments are failing.

Good luck with the scope and imaging!

Thinking of you, :heart:
Dusty. xxx

 

[crohnsinct]

Wow! Just sending some hugs and prayer your way:ghug:

Sorry the oncologist wasn't any help but glad you and the GI were able to come up with a plan that is acceptable to everyone. I hope she is feeling better soon.

 

[maddie's parents]

Maddie has relapsed. She was almost weened off Prednisolone. We were down to .8ml and then of course a full blown relapse. Her colonoscopy is scheduled for June 13th. Her Prednisolone has been increased to 3.2ml and still no relief. Slowing increasing the Prednisolone. I'm hoping the Prednisolone starts working soon so I don't have to increase it to much more. GI has also put her on Alinia for seven days. I'm hoping her colon is not to inflammed for the colonoscopy and the GI is able to get all the way up this time. I will keep everyone posted.

 

[Farmwife]

So sorry to hear the update.
I hope Maddie gets better soon.
I hope the increase in meds start to work.
Your in my thoughts and prayers.

:ghug:Farmwife:ghug:

 

[Suzysu]

So sorry she has flared up again - fingers crossed the pred starts to work soon - thinking of you guys xxxx

 

[JacksParents]

We are thinking of you. Hope you and Maddie get over this bump soon.

 

[crohnsinct]

Oh poor Maddie! I hope the prednisone helps her fast and that they are able to get a good look during scope.

FWIW - my daughter is nearing the end of her exclusive EN period and she has no small intestine involvement...almost all colon and she responded to the EN. I could understand your GI not thinking it would help (many don't) but why would they say it is not an option...if for nothing else than to give her system a rest. I wouldn't turn away the meds (ie prednisone) but maybe the pred just needs a little help...or maybe her system just needs a rest.

I am rambling now sorry. Just hate to see the kids suffering. Keep us posted.

 

[kimmidwife]

So sorry to hear! If I were you I would push for a trial of EN it really seems to help especially the little ones! A lot of US doctors don't believe in it. I had to push for it with my daughter for her it did not work because she refused to really give it a chance. I highly encourage you to try it. There are no scary side effects with it!

 

[Sascot]

Sorry to hear about her flaring up again. Hope the Pred works soon and good luck for the colonoscopy.

 

[izzi'smom]

I am so sorry to hear that she has relapsed again...such a rollercoaster of emotions...and I know how badly you want her off of the pred! Our stories are fairly parallel, it seems.
Not sure if I've mentioned, but we did give EN a try. (We are large intestine only disease also) It was a difficult regimen (our doc didn't like pm feedings so we spent a large portion of our day doing feedings, and although she wore a backpack/was mobile, it was disruptive). It staved the weight loss and helped us through an awful period of nausea, so I am grateful, but it wasn't an end-all solution for us. From what I understand from our doc, kids that tend to be refractory (steroid dependent), tend to not respond to traditional treatments in general.
I am hoping that her scope goes as smoothly as possible...wish we were closer for better IRL support!!

 

[QueenGothel]

Sorry Maddie relapsed. Is she still taking Methotrexate? I did notice one of the side effects of it is rectal bleeding. Wondering if it is steroids dependency or if the Metho could be causing the bleeding to start back up, and the steroids couldn't keep it at bay anymore. With Rowan it was the other drugs causing the issues so the GI believed. I hope she gets some relief soon. Hugs to you ad her. Take care.

 

[DustyKat]

Thanks for the update hun...:ghug:...I so hope the increase brings things back into line and your little one soon has peace and relief, bless her...:hug:

Sending loads of love, luck and well wishes your way!

Dusty. :heart:

 

[polly13]

Oh dear - I am so sorry to read that MAddie is suffering again - same thing happened lucy when we came off the prednisone. Also really sorry to hear your account of your discussion with the oncologist - I wonder sometimes with doctors are they de- sensitised (spelling?) from the fact that they are dealing with real children.
You are in my thoughts and I hope the scopes go well and than maddie finds some relief soon.

 

[LilyRose]

Sending healing thoughts your way.

let us know how things go.

Take good care of yourselves, I know this is a very difficult time.

LilyRose

 

[crohnicaly stinky]

Jennifer, I'm praying for you guys! I just can't imagine how difficult your life is at this point. I hope things turn for the better soon!