Colectomy for 2 year old

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Chanski23

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Nov 2, 2014
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Please can somebody offer me some advice? My two year old daughter suddenly developed symptoms of IBD at 16 months old, since then she has gone rapidly downhill she has tried all the immunosuppressants and the biologicals and even prednisolone but nothing makes any difference and she seems to just get worse. My consultant wants her to try bone marrow transplant but it's far to risky and not much evidence that it works if you don't have the il-10 gene which she doesn't.

I have gone for a second opinion and they think she should have a total Colectomy ASAP. I'm just wondering if anyone has experience of this in such a young child and if they have been good or bad? Should I be aware of anything in particular?

We are looking to have it done in the next few weeks so any advice would be really appreciated!
 
Hi and welcome.

I'm sorry your daughter isn't doing well. We have a great group of parent here. I'm sure our parents will be along soon.

Sending you my support
 
I'm going to tag some members that have young children hopefully they'll be by with their experience, malgrave, izzi'smom, queen gothel, farmwife, pilgrim.

I hope I tagged them correctly, if I got some of the names wrong someone please correct them.
 
I will tag cre (another parent to a young one).

Welcome,
my dd is 5 but dx at 3. My girl still has her colon so no advice their but...............
I will pm QueenGothel to let her know your here, her dd had her colon removed at 4 or 5 yrs of age.

Please ask as many questions as you like.

Did you do full EEN yet? Thats liquid drinks to let the gut rest and give it time to heal?
 
I admin two groups on Facebook, Parents of Kids with IBD and Parents of kids with an Ostomy. Both groups will send you a private message so if you have squirrelly privacy settings locate a folder called "other" in messages.

There are a lot of young ones whom have had colectomies and are doing great now. :rosette1:

Thank you so much guys for remembering me. I have not been on in a while. After all she has been through now they think she had Crohn's.
 
Something that is very important I do not know if your child has UC or CD but the statistics for VEO IBD is that it is more than likely Crohn's Colitis over UC. It is a sucky statistic but it is the truth. Because of this factor it is also important to point out that the US is the only place that does a JPouch on a small child for UC. Because of this reason I would be cautious about doing a Jpouch and would stick with an ostomy until you have more time to judge the Dx. Unfortunately it is impossible to give a UC dx 100% ever.
 
I'm so sorry you and your daughter have been dealing with such a serious and difficult situation. It's such a difficult decision. Where are you living, and are these well known pedi-IBD centers that have given you these recommendations? Has your daughter been on exclusive enteral nutrition? Is it malnutrition, bleeding, pain, something else or all of the above that have led to these recommendations? Is her inflammation isolated to her colon (that is negative upper endoscopies, normal MRE or CTE)?
 
Oh the heartaches your family must be having. I'm very sorry your sweet one is having so many troubles with this. I don't really have anything except for support to send your way. We are still trying to find the "right" medicines for our guy but haven't had to talk surgeries.
 
Thanks so much everyone I really appreciate your comments. So far she's had three upper and lower scopes this year and the inflammation is only in her colon. She is now in constant pain having 10+ bowel movements a day (and throughout the night) cannot eat at all she's on protein shakes only and is suffering the effects of malnutrition. Her albumin is very low and she needs regular and frequent transfusions of albumin and blood. And she stopped growing.
I know that there is a very real possibility that she could have the colectomy and it could turn out to be Crohn's but at the moment I really don't know what else to do. She's on Humira and rapumane and all it's doing is giving her horrible side effects and no relief.
She's under the 'best' children's hospital in the UK who advise the BMT and I have taken her to another very high profile hospital who have told me she needs the colectomy immediately.
I'm just worried if she could really get her health back with the colectomy? They have said that after one year if the inflammation has not come back she can have a pouch. I really don't want her to have the surgery but I'm desperate for her to have some normality and no pain.
This time last year she was completely healthy and happy thriving little girl, I really can't understand how it could get so bad so fast.
 
I will be in prayer for your daughter! Having a daughter that was critically ill but for a different reason at that age, I compassionately understand a parent's concerns. Do keep us posted in her progress.
 
For what it is worth. My kid needed multiple blood transfusions, albumin transfusions, suffered from rectal prolapse 8-10X a day. It was awful. She would just not stop bleeding. After her colectomy she was great. Now we had a lot of JPouch complications and the complication rates are really high with peds. Granted you will have a year to do your homework thereafter. It was like her miracle, that damn colon was nothing but trouble. Hugs momma, if you PM me your FB name I can approve you without going through the message portion.

I know plenty that were redx Crohns years later. I would not do a Jpouch on a kid now that I know. Trying to explain rectal dilations and why mommy has to do this every night is too traumatic. Doctors do not take that into account nor the issues of potty training a kid with severe incontinence.

Queen Gothel
 
I'm so very sorry to hear you and your daughter are facing this. My family member has done well on long term antibiotics-but not many docs tend to want to try this option. We were also looking at surgery, but have had a fantastic and ongoing turn around on antibiotics.

Given that other treatments haven't worked for your daughter, you may want to consider antibiotics before committing to surgery. The good thing is, they work quickly (if they work) and so you will know in about a week if it is helping.

I hope you find an option that works for you very soon.
 
Thanks so much queengothel can I ask how long after she had the colectomy she started to feel better? How did she and you cope with the bag? Could she come off all medications? I've researched the j-pouch quite a bit and I know that it can come with many complications which is why we are in no hurry for her to have it, it sounds crazy but after everything she has been through I feel like a bag is the least of her problems (might feel differently later though).
I'm kind of hoping that if it does come back elsewhere it might be more manageable, her colon is a mess and I can't believe anything can save it now.

Helenmelb we have just finished an antibiotic 'cocktail' and although it did help in the sense that she didn't seem to have any pain and her energy levels were way up, it didn't seem to do much for bowels and she was still bleeding and still having loads of bowel movements.
 
I really hope you find the right treatment soon. Seeing our children ill and not knowing what to do is a truly horrible thing, but this forum is a great source of support and information. God bless your sweet girl.
 
My daughter wasn't as young as your child when she had her colectomy, but she got sick when she was four and had a total colectomy at six. It was life changing. Before, she was going to the bathroom 20-30 times a day. None of the drugs worked. She rarely made it to school, she was up all night going to the bathroom, in pain all of the time. One day she started running a high fever, hallucinating and we did bloodwork and found her inflammation markers were sky high. We did surgery and got the colon out so it didn't kill her. It was pretty bad.

I was worried about her getting a bag so young, but her doctor said they tend to do better than teenagers. They accept it better and there is less angst getting it at a young age verses in the middle of the teenage years. The first night my daughter had the bag she folded her hands together to thank God (she couldn't talk with all the tubes in). The pain was instantly gone and she slept the night through for the first time in a year. There was a learning curve getting used to life with an ostomy, but I would do it a thousand times over to be where we are now. She goes to school everyday and is off all meds. She finally grew for the first time in two years and I am amazed at her progress.

She has only had a little bit of rectal bleeding and they told us she needed to use a steroid suppository after surgery to get rid of it (she has no colon but they left a little bit of rectum in case we ever wanted to reconnect her and do a Jpouch). They only make adult sized steroid suppositories, and it was torture to try and insert it. I went gluten free for my own health and she decided to do it too, which cleared up the small amount of bleeding that remained. They are now thinking her UC might be Crohns....the biopsies never showed granulomas but with the leftover inflammation and she has had what looks like ulcers on her stoma. Like I said, she has done fine after cutting gluten, but each kid is different. Even if it is Crohn's she still had to have her colon out and I am very happy with the decision we made.

Message me if you have any questions! It can be a really hard to navigate through this. I understand!
 
My son is much older.. but thought I'd add our experience so far in case it helps. My son's issues are in his large bowel too. Mainly the rectum and sigmoid colon. Last march we did a "diversion" surgery where they didn't remove anything for now and did a loop ileostomy. Very soon he felt much much better. However, then he started to have issues with his rectum draining muscus. It wasn't getting better from the "rest". We talked about removing the large bowel and switching to a colectomy. But before we did that, we are trying one last thing. We started Vedolizumab on Aug 8th. In the past month (at about 9-10 weeks after starting it) we are seeing his symptoms get better. So we are thinking his rectum might finally be healing! Today is our 4th infusion and 14 weeks of being on this new medication. Our doctor has put talk of surgery on hold.
 
Glittergirl I cannot tell you how much I needed to hear your story, she is in so much pain and misery right now and hearing how much the surgery helped your daughter really gives me hope. Can I ask if she had her surgery laparoscopicly? And how long it took for her to recover? Would it be ok if I pm'd you with a few questions about how she copes with her osotomy?

Brian'smom we have asked about the vedolizumab but it hasn't been approved for pedriatric use here and I don't hold out much hope seeing as she has had no response whatsoever to any of the drugs, i also feel like we don't have much time to play around with I can see her getting worse every day.
 
We tried Sulfasalazine, Pentasa, Azathioprine, Prednisone, Remicade, Humira, Cimzia, Methotrexate, EEN, TPN, and an ileostomy.... The large bowel still angry and suffering. Lately it's Vedolizumab and prayer. I'll keep you posted how things go. So far this is the best he's been. Still some issues and we don't know what the rectum looks like yet... but his inflammation numbers have come down for first time in like 3 years. I'm just trying to hang on until some cure comes about. But I also believe that sometimes the right decision is to take it out. We are ready for that... but now it's worth it to us to wait and see. So far the best thing that happened is the surgery. It gave him back a life with less suffering. The bag was an easy adjustment for my son. Even if the Vedolizumab helps... I don't see us getting rid of the bag anytime soon. It may be a permanent thing. Best wishes for you and hugs sent your way. This disease is so hard to take.
 
As crazy as our jounprney has been with all of the surgeries. I have to say she feels so much better and if you ask my DD about having an ostomy verse being like everyone else. Her exact words would be that she wants nothing to do with pooping with her butt. Life is much better. Her ostomy works great and has been wonderful. It does help that we had the best gut surgeon in our hospital make it. I truly do think it is important to be selective about choosing a surgeon. Unfortunately it took me a long time to realize this. If it is hard to get in with the best, asked to be put on his/her schedule right now, even if it is not soon. Seriously, I would rather wait and have more blood transfusions than have a not experienced surgeon. If you ever do a JPouch this is especially vital. I have saw some great stomas and some really bad ones. This is my DDs third, her last was just a redo when they removed her JPouch and she was mostly fearful that she would come out with no ostomy. She saw it her new ostomy and there was a sigh of relief.

I have yet to meet a surgeon that was not 100% sure of their skills in a pre-interview. Ask around and search pubmed for their name if they are worth their weight in Gold in the Gut and are a peds surgeon there should be something there to start looking.
 
I am so sorry to hear what your little daughter is going through. My son was diagnosed at the age of 26 months. In the VEO cases like yours and mine, broad immunologicals tests should be always done. Please take a look at the paper below, Dr Neil Shah is working in Great Ormond street hospital, I believe.

http://www.gastrojournal.org/#/article/S0016-5085(14)00919-6/fulltext?mobileUi=1

My son has temporary ileostomy but there is a constant thread of colectomy on us, he is having rectal bleeding which could be also due to diversion colitis. that's why the doctors don't want to do any hasty decisions about the colectomy at the moment...
 
Chanski23, I know exactly how you feel watching them in pain and misery. It's just not right for them to suffer so much!

My daughter did have her surgery done laparoscopicly. She looked pretty rough after surgery, all those tubes and things in her. It broke my heart, and I was like, what have I done?!? (Not that we really had a choice at that moment, but still). Even that night she started to feel better and got to lay in bed and rest instead of being up in the bathroom suffering. I knew we had made the right decision by the evening when she prayed and thanked God for her ostomy. She had her little hands folded and pointed down at her stoma :)

She healed up pretty quickly from surgery. She was released about a week later. She didn't seem to be in much pain from the actual procedure. She was soooo hungry though and they wanted her to wait a while to eat, which was difficult. Surgery was done Sept 19 and she had a pass to stay out of school until after Christmas. She felt so great and already knew how to take care of her ostomy during the day, so she went back to school in time for their Halloween party. She is so much like a regular kid now it amazes me. Life is so normal now, I forget how bad it was until I come here and it's a great reminder of all the progress she has made. I was really hesitant about surgery, but after you've been down the road of medication after medication with no results, it doesn't seem so bad!
 
Thanks guys honestly this is the first time I've been in a forum and I already feel so much better knowing that other kids have come through this and stayed positive and confident. I just don't ever want her to feel different or sad but in my heart I know that she cannot continue with all these medications that are only damaging her without any of the benefits.

I do feel like the surgeon is very good and makes us feel quite confident but I haven't actually met or seen any of his previous patients so thanks for bringing it to my attention I think I'll have a look into it. I'm slightly put off the j-pouch after hearing all your stories I think we will take our time with it as long as she's ok with the ostomy, who knows maybe they will have something new by then!
I would like to ask you all a question though... Would you have considerd a bone marrow transplant instead of the colectomy for your children?
 
There are some members who have chronicled their journey with stem cell transplant. Some using themselves as donor others using donors such as siblings. The latter, I think is more efficacious. I'll post a link to the thread that lists the links to those individuals that have gone through this(i think they are all adults though

http://www.crohnsforum.com/showthread.php?t=22259
 
Chanski23 said:
Thanks guys honestly this is the first time I've been in a forum and I already feel so much better knowing that other kids have come through this and stayed positive and confident.
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That's the whole reason this forum is here. So other's know their not alone.:hug:

Whatever you decide it will be the best. You little one deserves a happy life and even with IBD in the picture, it's still possible to have that happy life.


Hugs
 
Just wanted to send my support. I am sure this is a heart-breaking time for you. But, there will be a treatment that will help your little one and better days are ahead. I am praying for you as you make these difficult decisions.
 
Will be thinking of you and your sweet little girl. Good luck with your decision:hug:.
 
Chanski23 said:
I would like to ask you all a question though... Would you have considerd a bone marrow transplant instead of the colectomy for your children?
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I asked this very question up at Mayo before my son's ileostomy was on the calendar. He didn't even hesitate and said No, he wouldn't go that route. I told him I had to ask. Wouldn't hurt to ask your GI also. Our GI acted like the ileostomy was safer than that. But of course, that's his opinion.

QueenGothel. I totally agree with your statement about picking the surgeon. We had to wait a month longer for the surgeon our GI wanted. I pushed and asked if there was anyone else that could do it sooner because we wanted to be off the TPN and he wasn't doing good--even with nothing by mouth and 100% TPN. Our GI held firm. He said he was the best. He called him the "maestro of colorectal surgeons". :) So we waited. Boy oh boy, I am SOOOO Glad we did. His healing was great. His stoma has worked great and looks great. In a good location. Etc, etc. I didn't realize either, until later. We even have a video that he went thru after the surgery, step by step, showing us everything.
 
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Briansmom thank you for sharing that! Out GI has been pushing and pushing for the BMT even before she got so sick, but every other consultant I have spoken to has said they would not recommend her to go down that route which is why we have to have the surgery somewhere else!

We will be going ahead in a few weeks and I'm so nervous....
 
When you say BMT or bone marrow- I'm assuming you mean the stem cell transplant, right? Your GI is pushing it? Why, do they have kids that have done this? With yours only being 2yrs I'm surprised.
 
I am super late to the party-sorry, not on much!

DD was facing a subtotal colectomy 2 years ago (in August) at 5 years old. They put her on Tacrolimus to get her colon healthy for surgery, and the ensuing remission lasted 2.5 years. (I cancelled the surgery).

I felt that 5 is a super young age to make a life changing decision for my child if I don't feel that I've exhausted all possible options. She is in the midst of switching meds (and feeling terrible) and said to her grandmother last night "I can't believe it would have been two years with a bag". I am hoping to find a solution to get her to an age where she can maturely participate in a discussion to have the surgery-and decide that her quality of life is such that surgery, even with risks and complications, is the best possible option. I think for every kiddo the age is different, but at almost 8 dd is wise beyond her years.

I am hoping that whatever you choose for your family it works wonders-it's so difficult to see these little ones in pain and exhausted-sending healing thoughts.
 
I can't imagine what you're going through :( My heart goes out to you, your little one, and your entire family.

I must admit, I stared at the monitor for about 5 minutes wondering if I should even send this but:

Chanski23 said:
My two year old daughter suddenly developed symptoms of IBD at 16 months old, since then she has gone rapidly downhill she has tried all the immunosuppressants and the biologicals and even prednisolone but nothing makes any difference and she seems to just get worse.
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Chanski23 said:
Helenmelb we have just finished an antibiotic 'cocktail' and although it did help in the sense that she didn't seem to have any pain and her energy levels were way up, it didn't seem to do much for bowels and she was still bleeding and still having loads of bowel movements.
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Are they 100% sure it is IBD?

While early onset IBD is usually worse, that it was completely refractory to all the traditional treatments and if anything, she got worse, AND then she seemed to do a bit better on antibiotics makes me wonder. There are some diseases that mimic Crohn's disease that can literally require months of antibiotic treatment.

I realize you have the best doctors in the UK on this which is why I really thought more than twice about even writing this, but I felt I should bring it up. Sorry if my asking is offensive or causes you duress :(
 
I have to second what David said. Also our doctor recently to,d us that if your child presentation with IBD prior to puberty to ask for a complete immunological work up. There is research out there showing that IBD can actually be a secondary illness with something else such as primary immune deficiency being the primary illness. IF they have not tested her for this please ask to be tested.
 
From our experience, if IBD meds don't work...it probably isn't IBD. If you have any questions about immune testing I'll be glad to share what I've learned along the way.
 
Hey everyone thanks so much for all your responses. She has had a whole bunch of immunological testing done and they didn't find anything. I have always struggled to accept that she has IBD mainly because of they way it started, she was a very healthy thriving child and then she caught a vomiting/diarrheah bug and had her MMR vaccine as soon as it stopped, then a month later (after her stools etc. went completely back to normal) I noticed some blood in her nappy and within two weeks she was having 3 nappies of pure blood a day, a week later she had a scope and they told me it was IBD.
They started her on Steroids and Sulfazalazine and it didn't really help, then she developed ITP (low platelets) and stopped the sulfazalazine and gave her another course of prednisolone which did nothing, then she started infliximab and Aizathioprine and she just got so much worse. They then did another scope and found the inflammation had become so much more severe and switched her to Humira and sirolimus. Since then she has again just gotten so much worse. It seems like all the drugs I give her make her more ill, which makes me think this is nothing to do with her immune system at all. Another reason why I can't agree to the BMT.
I'm really scared about the colectomy but in all honesty I just don't know what else there is to do, she sufferes with extremely low albumin and we just can't get on top of it and she's become malnourished.
I am wondering if I should try a temporary ileostomy first but I know that won't solve the inflammation that's there and they would still want her to be on medication.
 
Does she have a NG tube or a g tube ?
Is she on elemental formula on 24 hour feeds with a pump .
Elemental formulas are easiest on the gut and only take a few inches of healthy intestine to be absorbed .
Examples
Elecare
Neocate
E028 splash
Your Gi should be able to get it covered and get you a script and samples to try .
It tastes bad so most kiddos need a tube but it would give her proper nutrition and improve her health even if it's just for surgery .

It won't fix the crohns but could help with the nutrition and malabsorption .
I know some kids with EGID bleed from there gut when they are on any whole proteins even in food only complete avoidance helps.
Using formula only EEN is a form of treatment for crohns since it helps with inflammation .

Apfed is the place with info about Egids which are more common in babies and allegy testing won't pick up the triggers that cause the gut inflammation .
 
What are the Symptoms of EGID?
Symptoms may vary considerably, depending on the area affected.

Symptoms include:
Nausea or Vomiting
Diarrhea
Failure to thrive (poor growth or weight loss)
Abdominal or chest pain
Reflux that does not respond to usual therapy (which includes proton pump inhibitors, a medicine which stops acid production)
Dysphagia (Difficulty swallowing)
Food impactions (food gets stuck in the throat)
Gastroparesis (Delayed emptying of the stomach)
Anorexia (poor appetite)
Bloating
Anemia
Blood in the stool
Malnutrition
Difficulty sleeping

Since none of these symptoms are specific for EGID, and many occur at times in healthy children or adults, the diagnosis is generally sought only after the symptoms have failed to resolve. Eosinophilic disorders can mimic the symptoms of other diseases like inflammatory bowel disease, food allergies, irritable bowel syndrome and reflux, among others
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From:


http://www.apfed.org/drupal/drupal/what_are_egids
 
She's is currently on PN nutrition which we have just started to prepare her for surgery. Her nutrition has been so poor but she hasn't been on any tube feedings.
I think that they are going by the scope results and the biopsies and histology findings which is why they've ruled out this being any kind of allergy. We have not really cut out any food but her intake is so poor I would think it would have gotten slightly better with no food going in. In fact it only seems worse.
 
Hi Chanski23, I just saw your post as I haven't been on this site for quite a long time. I'm so sorry about your daughter. I haven't read through the entire thread so forgive me if this has been said but the risk with "VEO" or very early onset children (diagnosed before the age of 3) is that they will actually end up having CD even if all testing points towards UC. They just tend to present with colonic disease which initially mimics UC. The fact that your daughter has low albumin is perhaps a sign that there is inflammation in the small intestine. Ha she had a capsule endoscopy and or MRE? I know those tests are sometimes difficult with a small child but you should pursue as much small bowel testing as possible before surgery.
Having said this, sometimes there is no choice but for the colon to come out. If it turns out to be crohn's then that is treated after the fact. I know a number of very young children who have had colectomies - some who have been rediagnosed with CD and some who have not. Please PM me if you are interested in joining support groups with parents of those children.
My daughter was diagnosed with UC at 3.5 and after five years of trying every medication, being steroid dependent, trying any and all alternatives (diets, ldn, daily long term fecal transplants, chinese medicine, functional medicine any many, many more) she had a colectomy in March. I don't know what the future holds but the ostomy is a piece of cake in comparison to the disease, and she is doing well. It's the best decision we could have made for her. I wish you the best of luck and feel free to get in touch if you want to.
 
I do NOT agree that if IBD meds do not work than you might not have IBD. Most VEO kids do not respond to treatment because their disease is usually colonic. Colonic disease is definitely harder to control due to the bleeding. Rarely does Remi work in the colon. Serum Albumin tanks in these kids not always because of small bowel disease but usually because of the anemia which is not uncommon for heavy bleeders. When inflammation occurs, the liver, where albumin is produced, must change from producing albumin to producing other proteins needed to fight the inflammation. In the VEO cases small bowel Crohns likes to show up after age 7-8 for some reason. It is very common in VEO IBD to have VEO Crohns Colitis. Sorry you are still dealing with a lot of heartache. When my DD had low Albumin we fed her eggs often. Specifically spaghetti carbonara with turkey bacon.
Regardless you kid being so young I would avoid a JPouch until after age 8 at least.
 
You don't have to agree with me QueenGothel, but from OUR experience my statement is absolutely true. Most people with CVID and other PIDs aren't diagnosed until adulthood because they are first incorrectly diagnosed with IBD or another autoimmune condition. I certainly didn't say her daughter DOES have an immune deficiency, but since the IBD medications don't seem to be working it wouldn't hurt to have extensive immune testing done to cover all the bases. Had we not done that we would still be barking up the wrong tree.
 
Well it is standardized testing to do an immunology work up for all VEO IBD kids. The Meds not working isn't the indictator but the work up is. More VEO kids do not respond to medications than do respond. Just an VEO-IBD fact for so many. I have a VEO IBD kid. Just because it was your experience doesn't mean the statement is true for all. This is my point.
 
Look, we spent 9 years searching for answers before immune testing was done for my daughter. If I can save someone a few years of stress, sickness, anxiety, and concern by mentioning our experience....I'll do that. It isn't an argument, it is our story. We didn't start immune testing until the IBD medications didn't work....and caused lots of unwanted side effects.....
 
It's so hard to have medicines and surgeries not work and no definitive tests that show its anything other than IBD... It seems like there are quite a number of kids on here that either the meds only work for a short time and fizzle out or they don't work at all. So it must be something that happens in the IBD world. We've done immunology tests twice that have come back with us not having an immune defiency. We are now waiting on a IBD gene panel sequencing test to see if IBD genes are present. I like seeing everyone's experiences and theories because it keeps me asking questions of our GI. Keep posting :)
 
QueenGothel said:
I do NOT agree that if IBD meds do not work than you might not have IBD. Most VEO kids do not respond to treatment because their disease is usually colonic. Colonic disease is definitely harder to control due to the bleeding. Rarely does Remi work in the colon. Serum Albumin tanks in these kids not always because of small bowel disease but usually because of the anemia which is not uncommon for heavy bleeders. When inflammation occurs, the liver, where albumin is produced, must change from producing albumin to producing other proteins needed to fight the inflammation. In the VEO cases small bowel Crohns likes to show up after age 7-8 for some reason. It is very common in VEO IBD to have VEO Crohns Colitis. Sorry you are still dealing with a lot of heartache. When my DD had low Albumin we fed her eggs often. Specifically spaghetti carbonara with turkey bacon.
Regardless you kid being so young I would avoid a JPouch until after age 8 at least.
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Thanks for sharing this valuable information, it's appreciated. :) One small thing:

QueenGothel said:
I do NOT agree that if IBD meds do not work than you might not have IBD.
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If those of us bringing up the possibility of it not being IBD were saying it was DEFINITELY not IBD if the meds weren't working resulted in you posting this:

QueenGothel said:
I do NOT agree that if IBD meds do not work than you definitely don't have IBD.
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then I'd agree with you completely. We're just saying it's a possibility and want to make sure all bases have been covered. I personally brought it up because it wasn't so much the meds not working, but her getting worse on the traditional meds and better on antibiotics.
 
DanceMom-
how old was your child when the diagnosis changed? What kind of specialist did you see to confirm the new diagnosis?
 
She was diagnosed with Crohn's in April 2013 and in November 2013 it was determined she didn't have IBD. She was 8 then. She turned 9 in January 2014 and was diagnosed with an immune deficiency this past July. Our GI suspected an immune deficiency and sent us to a Rheumo/Immuno (who was sure it wasn't a PID, lol). We would like to see another local immunologist that specializes in PIDs but since things are going okay right now we've put that on hold.
 
Dancemom- Do you mind more questions? Why did the GI suspect the immune deficiency? Was her colonoscopy consistent with IBD before the new diagnosis? What would you suggest to a parent of a young child who doesn't have typical presentation and isn't responding as excepted to treatment?

Our doctors have told us immune deficiencies are not a possibility because our child doesn't not have frequent infections that do not respond to antibiotics and other broad statements. I don't know if I trust those assumptions since we were previously told our child didn't have IBD since he didn't wake to use the bathroom and didn't pass bloody liquid stools. Buit his colonoscopy showed acute and chronic inflammation.

I think it's helpful to many of us with young children to learn more about this.
 
I'd like to add a question... I've also heard immune defiency accompanies respiratory illnesses. But I know in Malgrave's case it manifested in the intestine. Did your daughter have respiratory stuff (I'm sure you have previously posted but I can't remember) :)
 
Her scopes (she's had 5) were either normal or showed acute inflammation. Pill cams (she's had 3) were either normal or showed ulcers. She had chronic diarrhea, bloody stools, FTT, EN, joint pains, headaches, stomach aches, fatigue, and low grade fevers. It really looked like IBD in the early stages. But when the IBD meds weren't helping our GI sent us to the IBD clinic in Atlanta before stepping up treatment. They decided it wasn't IBD, but maybe some sort of autoimmune disease. Our GI then pushed the immune testing and he was right. A has Common Variable Immune Deficiency with an atypical presentation. She doesn't have the sinus issues and frequent lung infections most PID patients have. She does have asthma, so there is some lung involvement, but most of her issues are GI related.

I'm happy to share what I've learned and it's one of the reasons I stick around. Plus you guys are awesome and always so supportive! IBD is rare and can be difficult to diagnose, but CVID is more rare and often a diagnosis isn't made until adulthood. Hence the reason those with a PID are called "zebras", because doctors are trained to think of horses when they hear hoof beats. Our GI just happens to be pretty awesome and I'm so thankful we found him!
 
Just bumping this up to see how it went for Chanski23's daughter. If you have time or energy let us know how she is doing, and please know that our prayers and thoughts are with you and your family.
 
Hi Pilgrim, thanks for thinking of us! She's had the surgery and so far she seems to be coping really well, we are getting used to how everything works now but she's got her energy back, she's walking again and happier then she's been in a long time. Still have panic attacks that things will go wrong but right now i know for sure that this was absolutely the right decision for her. Thanks to everyone on here for the amazing support all the advise was invaluable!!
 

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