10 Year old Daughter just Diagnose with Crohn's

Hi there,
We just found out after 17 months of our daughter having severe abdominal pain that she has Crohn's Disease. It was a LONG journey to diagnosis. We visited FOUR GI specialists, two surgeons, a rheumatologist, nephrologist, pain clinics, chiropractors, accupuncurists in three various 'child' institutions spanning 60 miles. Each time we would explain to the doctors that my daughter had continuous stabbing pain in her lower abdomen which increased ALWAYS 1 hour after eating any solid food, she cannot run/jump play because of this pain, she has joint pain, mouth sore, high blood pressure and tachycardia. They would run test after test, but never find ANYTHING. After several referrals to 'psychologists', we finally ran into a godsend. A surgeon who took a personal interest in her case and got her to the right GI doctor who did a pill capsule test and found out she has multiple large, deep ulcers in her jejunum and proximal ilium. She is finally on a course of Prednisone and Pentasa, but after a week, we have not seen any improvements. We are infuriated that we had to beg and plead our way through supposed 'Childrens Hospitals' to get to that ONE person who would have the tenacity to see the case through to diagnosis. As I understand it, it can be difficult to diagnose Crohn's in kids because, especially those without diarrhea. But, if it is typical, we wonder why doctors kept telling us they could find nothing, therefore...get this....she had pain after eating because she was ANTICIPATING the pain. REALLY??? These professionals are just NUTS.
Thanks for letting me vent. Does anyone happen to know how long it takes for Crohn's ulcers to heal?

Welcome Dee!! My son was also dxed at ten. The GI first started him on Asacol and it was amazing how quickly it worked on him. It was so effective that I really did not want him to do the pred but the GI convinced us.

There are so many stories like yours on here about overlooked symptoms and missed diagnoses. I hope things turn around for her soon Dee!! Good luck!!

Hi Dee,
I know it is very frustrating when the doctors we trust misdiagnose or pass off these symtoms as "normal". My son was having loose stools and cramping for about 2 years and not gaining weight or height at a normal rate. The pediatrician didn't recommend a GI. Finally fed up, we asked for a referral to a Pedi GI doctor. They didn't diagnose it as crohns right way. We had to do a series of test to rule out other things. Finally, we noticed canker sores in his mouth and and on-again off again fever. We called the doctor and they scheduled a colonoscopy. Thats when they found the crohns. That was the winter of 2007. They started him on entocort (steriod), Pentasa, and 6-mp right away along with omega 3 suppliments, and pro-biotics. It took a couple months to really see results, until the 6-mp got into his system and started to work. He stayed in remission for a whilte but flared again, so they upped the 6-mp, he did well for another year or so and was finally growing. He had a flare the past december, they started him on entocort again, then left him on it as a maintenence program, unfortunately, he wasn't getting any better. We just had a colonoscopy & endoscopy last week and the doctor has recommended we start remicade injections. He has his first on on friday this week. Hopefully this will put him in remission. Its hard to say when the drugs will start to work. Every case is different, but I would give it more time. Good luck with everything, trust me, I know what you are going thru!

OMG!! (((HUGS)) to you parents! Its hard to be a parent watch your kid...You've come to the right place for support...Peace, Sue

Hi Dee and Welcome !

My daughter wasn't diagnosed until age 17, but she has been suspected CD since age 9. So yes, it can be very difficult to get a diagnosis unfortunately.

My experience with her mouth ulcers is that they would normally heal within 1-2 weeks, depending on how bad the flare was at the moment. Sometimes she would only get 1-3 little one and they would go quickly; and other times she would literally have a mouth full and they would last for weeks.

I'm glad your daughter finally has a diagnosis though I know the pain of going from doctor to doctor and raising hell until they listen all too well !

Hang in there and glad you found us !

Deemari, I was diagnosed way back in 1969, when I was 17. We had to go to several doctors who had no idea why I had lost my appetite (and with it about 50 lbs) and was having abdominal cramps. Finally my mother got a referral to a GI specialist who diagnosed me as I walked into his office.

Now, back then, Crohn's Disease wasn't as well known as it is today. On the other hand, today, docs may be aware of many more bizarre possibilities than they used to be. In other words, knowing more doesn't necessarily make things easier!

I will say that I personally am glad that I wasn't born a decade or two earlier than I was. I'm going through some little difficulties of my own right now, but in the long run, I'm confident that the docs will eventually sort me out as well as possible, and Modern Medicine will once again help me out as it has in the past.

It's a tough diagnosis and I wish you and your daughter the very best.

Will

Thanks

HI all,
Thanks so much for your responses and support! It has been such a LONG road. Unlike several other stories, we were referred almost immediately to a GI doctor. My daughter has had four endoscopy procedures, and three colonoscopies, none of which ever found the Crohns. I am so thankful that we live in the age of technology that we do, or this wonderful pill capsule camera that finally found her issue would not have been an option.
I am looking forward to her being able to eat solid food again without pain. I am looking forward to her having a mouth without sores (they have not gone away for 12 months!), and mostly, I am looking forward to her being able to participate in the physical activities she used to love, but cannot do now do to so much pain.
I feel for everyone on here, and every parent with a child with this disease. It is hard to feel so helpless when your child does not feel well, and it is even harder to continue to fight, or rather combat, the medical community for answers. It wears a parent out. But in the end, to get our kids better, it is worth it!
Does anyone know what can help with the abdominal pain? Do you think it is just a matter of waiting for the ulcers to heal? My daughter has not been out of pain one minute of the last year and a half. NOTHING has helped, not morphine, not narcotics, not accupuncture, not even an epidural. What is up with that?
Thanks all....I'm so glad i found this forum. I am certain I'll be using it to gain and offer support for many years to come!

I'm not an expert at handling pain and as I am having chronic pain myself now I'll be looking for more info on this topic, too.

But I can give a quick answer.

The serious painkillers (narcotics) are themselves pretty dangerous. Certainly something to go over with the doctors. I have a prescription for Hydrocodone, but I almost never permit myself to take a pill unless I'm really hurting—maybe a couple times a month.

Years ago after my surgery, I went through an adult support group and learned some meditation techniques that were in fact pretty helpful in dealing with pain. I'm a Catholic and was a bit skeptical about the approach at first but it was not religious meditation (although I suppose that would work, too), just some serious techniques to calm myself and relax my gut. Lately as my pain has been coming back, I've been trying to revive these techniques, with some success. Don't know if this can work for a younger patient.

Of course the best relief comes from remission and I hope you and your daughter find a path to successful treatment soon. Good luck,

Will

Hi Deemari and welcome! I am so very sorry about your daughter. I am sorry she is in so much pain and it took so long for her to get her diagnosis. Unfortunately, Crohn's is very difficult to diagnose.

I sure hope her treatment will start to kick in soon. If not, you need to be proactive with her doctors to try a new plan. I can take awhile to figure out the treatment that works best (we are all different), but I hope you won't have to wait long. Good luck!

Hi Deemari and :welcome:

Sorry you had to find your way here, , but on the upside it is a great place for support and info. We also have a parents forum here so drop by and have a look around...

http://www.crohnsforum.com/forumdisplay.php?f=49

My daughter went undiagnosed for 18 months and ended up getting her diagnosis on the operating table. There are many, many people here, carers and sufferers alike, that understand your pain and frustration with the long diagnosis time. Is there anything worse than watching your child suffer, day in and day out, and all you can do is stand by and watch and wish more than anything that it was you? I don't think so!!!

I found B Complex worked a treat with my son's mouth ulcers and Dexky's son was troubled with them and he added a mouthwash to help treat them, I still can't remember what it is though...:eek2:

I don't know how long it takes for intestinal ulcers to heal and I'm not sure if the ulcer itself is the whole cause of the pain but also the inflammation that goes along with it. I would tend to lean towards the inflammation simply because many people seem to find relief once the inflammation is brought under control and with Prednisone this can be within a day or so. I don't imagine an ulcer would heal that quickly.

My son didn't really respond to Prednisone either but he was found to have complications of his Crohns and until that was treated the medications didn't do anything. He had a fistula and abscess, well 2 actually. I would be concerned about the ongoing pain and push for further tests and/or explanations as to why it isn't resolving. I don't know, in my own experience of Sarah having untreated Crohns for so long I think it has made me suspicious of complications.

Has your daughter had bloods done recently? Do you know what her inflammatory markers are?

I hope things turn around for your baby soon. Good luck and welcome aboard!

Take care, :hug:
Dusty. xxx

Thanks, DustyKat. I will check out the link.
You are absolutely correct. There is nothing worse than standing by watching your child suffer without having one thing you can do to help. You just want to take the pain away and would trade places with them instantly if you could! I am soo deeply sorry you have gone through the same thing as us...it is just a horrible feeling!
I may try the B vitamin...my daughter also always feels like she has bugs crawling on her skin and I read that can be from Vit B deficiency.
Wow...how did they find your son's fistulas and abscess? My daughter recently had an MR Enterography that showed neither of these. But, i find it hard to believe that she doesn't have anything like that given she can't run/jump or walk without cramping. It seems like something is pulling on something. She had her appendix removed in July before they knew what was wrong, and the surgeon said the omentum had reached out and covered the appendix, which was causing right sided pain. I worry something like that is occurring elsewhere also.
My daughter has been on Prednisone for a week now, no results. She is also on Pentasa, for 2 days, no changes.
Her blood work is totally normal. No high CRP or ESR. This has always been part of the issue on diagnosing her...her blood work never shows anything except elevated IgA which they say only shows mucosa inflammation, but was non specific.

It isn't uncommon, paricularly in children, to have normal blood results while flaring. My son was opposite to my daughter. Many was the time he presented well outwardly but the bloods told a different story. My daughter on the hand had normal blood results right up until the night before she ended up having emergency surgery. Yes, normal blood results even though when they opened her up she was a mess...perforated and infarcted bowel with pus everywhere and I don't think that happened in less than 24hrs!

Wow...you must have felt so helpless! What symptoms did she show that made you realize you needed to get her to the hospital and into surgery?

Yikes! Phantom post, this is the rest of it...:lol:

Have her B12 checked as well if that hasn't already done.

Matt had right iliac fossa pain, he was doubled over and limping with pain, and that coupled with the high WCC and CRP had them searching for something. He had CT Scans and I have read that they may be better at visualising these type of things. (((shrug))). They were unable to find the abscess on the first scan so waited until he had 5 days of IV Hydrocortisone and antibiotics and the inflammation had died down. When they rescanned him they found it. They always suspected the fistula was a microperforation and after they inserted a drain they sent him for a sinogram and they found the connecting fistula that way.

Dusty. :hug:

She had unresolved abdominal pain and vomiting that was becoming more frequent and then she developed a fever. She was admitted the week before and they thought she had pancreatitis. Oh yeah, the one abnormal blood result...pancreatic enzymes...but they were normal the next day as was the scan prior to discharge, they have never been able to work that out in view of what they found a week later.

Dusty.

Wow. Such a lot of suffering for both your kids. I hope research on this disease continues and eventually all who have it can be cured.

Hi there,
Well, the Pentasa and Prednisone has had no effect whatsoever on my daughter....next step is something called Methotrexate. Does anyone have experience with this drug? We were told it is also used as a chemo drug in higher doses, but tends to do well in low doses for Crohns. The thought of putting a chemo drug in our child is nerve wracking, though. Any thoughts?

hi, my 11 year old son was diagnosed with crohns last year and was put on pentasa mezalazine 500mg three times a day,they took about three weeks before we noticed any improvement . he had to go on a liquid diet for six weeks to give his bowel a rest which wasnt very nice for him, or for me as a parent especially when you have other children to prepare meals for,but give it time and all will be fine.

Hi Dee, Julie(AZMom)'s daughter Claire has been on Metho. She may have some insight for you. I know all these meds are extremely scary. Just remember with any new meds the docs will keep a very close eye early on. Good luck!!

My son peyton when first diagnosed in 2008 was put on 6-MP (Mercaptopurine) which is also a drug used to treat some cancers. He's no longer on it because after 3+ yrs it just stopped working. On Remicade now and so far so good. I know its hard no to be scared of the meds, I didn't like the facet that 6mp was also used in chemo, but it really helped him.

Good luckl!

Thanks for the update Dee!

I know of three parent's that have children either taking Methotrexate, are about to, or have been on it...AZMOM, Saphira and scrapper1264.

Unfortunately once you progress past the mild drugs the list of side effects will raise the hairs on your neck, and everywhere else for that matter! It really puts you between the devil and the deep blue sea. When your child is suffering though I think the water can become a little less muddy. I hate the fact that both of my children are on Azathioprine but since being on it they are both healthy as they can be and in remission. I should add here that they have both had surgery and it is that actually put them in remission, the Imuran is a maintenance med. This is something I wrote some time ago but my views remain unchanged...

I think most would agree that Crohns is not curable at this point in time and therefore the aim is to gain remission and stay there for the optimum period of time. Roo's surgery put her straight into remission and she has stayed there but I view Crohns as a disease that is lurking and waiting to strike when the time is right, so if I can regulate that response to some extent then that's what I will do. I see Imuran as a preventative medication much like Pulmicort is for an asthmatic, it stabilises your underlying condition so hopefully you can avoid or at least lessen the occurrence of a full on asthmatic attack.

Another point I think worth mentioning is while ever Roo has Imuran in her system then should the need arise to increase the dose she does not have the waiting period for the medication to start taking effect.

Click to expand...

I wrote that in the context of maintaining remission.

As I said, I hate them being on it but I would also never wish to go back to the days of pre-op and pre Imuran, they were horrendous.

I guess as parents this is pretty much how we feel with every decision we have to make...

Good luck hun and keep us posted!

Much love, :hug:
Dusty. xxx

I agree Dusty, not treating the crohns in kids especially is worse then the drugs they need to be on. Untreated crohns can cause so much havoc on the body with lack of growth, unable to absorb nutrients, etc. I hate the fact that Peyton had to have so many chemicals in his little body but they help him so much, I'm just so thankful that they have these drugs to control this horrible disease. Since peyton started Remicade about a month ago, he's a different kid! So much energy and he's gaining weight, its wonderful to watch. I'm still waiting for the rug to get pulled out from under, he still has one more loading dose of Remicade in a couple weeks, then he'll be every 8 weeks. There's still a chance that he could build up anti-bodies to the drug, but if that happens, we'll go to the next drug, humira. But so far, so good. We've been able to take him off of: 6MP, entocort, and we are weaining him off of the 4 pentasa he takes everyday. That along is a huge deal, less meds he needs to take everyday! He's just happy to be a kid again and feeling so good,

Good luck to all,
darlene

I strongly agree with the above!!!! I was very ill between the ages of 8-18, I was on pred for most of that time and tried so many medications ON TOP of the pred to get me off it. This included imuran, ciclosporine remicade andother steroids. The only drug that ever gave me lasting damage was the pred. Firstly by ever preventing me from growing over 5'1 (But really, that's no biggy) and giving me osteoporosis. Even that isn't so bad because the osteoporosis was only from being on pred for so long and it's slowly been getting better all by itself.

I've been on methotrexate recently and it did work well for me, although it did damage my liver and I had to come off it. But again, it was only temporary. My liver is back to normal.

And look at me now, I have a degree and as brilliant career infront of me and I LOVE my full time job and life. If it wasn't for those drugs I would most likely be dead by now. Any medical problems I have right now are from my crohn's NOT from any drugs I've ever taken in the past. Sure some of the drugs caused not so desirable effects at the time.. but like I keep saying, they certainly weren't lasting.

Anyway, I'm waffling now. I just wanted to say please, please, PLEASE don't ever deny your child any drugs which will potentially make them ALOT better because of the side effects. Yes, it may be scary but believe me, docs wouldn't be allowed to give children these drugs unless it was in their best interest.

Good luck with the methotrexate. I hope your daughter feels better soon!!

Thanks, all for your insightful responses. We have decided to go ahead with the Methotrexate and she has begun weaning off of the Prednisone. We hope and pray this will be the resolution.
On another note, has anyone had their children have issues jumping/running and just generally taking the stairs normally while in a flare? My daughter still cannot walk further than 3 blocks without her stomach cramping, nor can she jump without the same. It just seems odd that ulcers internal to her intestine would cause this, but it did all start at the same time. Just wondering if the Methotrexate clears up the ulcers, will this go away too, or is this likely some sort of adhesion?
Thanks again for this wonderful forum and all your support!

You'd be amazed Deemari, at what inflammation and ulcers can do pain wise. Sometimes just air passing through my inflamed sections can cause loads of pain. Have you ever had an ulcer in your mouth? If you had you'd know how much it hurts when anything touches it. The ulcers in the intestine are just the same, just in a different place.

I wouldn't be surprised if it was the ulcers or inflammation. It used to be painful for me laying on one side, yet alone jumping up and down!

Hopefully the methotrexate will get her into remission which should heal up the ulcers and take away the pain.