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Recent Diagnosis of My Son

Hi everyone! I'm so thankful that I found this forum! I've been looking for answers and I feel as though I know absolutely ZERO about this disease. No one else in my family has this issue that I know of, and it's been so frustrating.

Our story started recently at the end of June. My little boy, whom I call B, had just turned 4 the previous month and had no other health issues. He's big for his age and very healthy. But at the end of June, that changed. He began to vomit several times a day, he quit eating and drinking, and he stopped having bowel movements. This was a Wednesday and I just thought he had a stomach bug. He never had a fever and he even played and said he felt fine other than the vomiting. By Sunday evening, he had stopped eating and drinking altogether, so I took him to our local emergency room. They said he had a virus (then told my father-in-law he was constipated), gave him an enema (without waiting for it to work) and sent us home. He never went to the bathroom and was worse the next day. We decided to return to the ER, but went to one at a bigger hospital. Again, we were told he was "full of it" so they gave him two more enemas until he got it all out.

I was told he would better the next day and that this wasn't uncommon. I didn't feel it was resolved, but after nearly a week of vomiting, I was hoping they were right. The next day was Tuesday and he was worse. He was just laying and staring most of the day and I decided he was going back to the ER and wasn't leaving the hospital until we got answers. Back we went and they agreed something else was going on, especially when he vomited once and it looked and smelled like stool (sorry to be gross, but it did). The pediatrician said he was most likely dehydrated and fluids should help. It didn't. All day Wednesday he only moved if he had to be sick and he now had diarrhea (the smell was worse than anything I had smelled before). He was like a little wax doll just laying there. It was very scary and we all thought he was going to die. The next morning, Thursday, after a week of steady decline, the pediatrician said she was going to have him transferred to a larger hospital so he could have access to specialists. Within two hours he was being admitted and we knew we were there for a long stay.

A PICC line was started and that helped. By Sunday, they had exhausted all of the non-invasive tests they could do and decided to do colonoscopy and endoscopy (sorry if I misspelled!) to see what was going on. They had suspected inflammation, but they weren't sure how bad it was, where it was, and what was causing it. It was very bad and was found in all parts of his intestines, had caused his bowels to shut down (why he was full), and the opening between his stomach and small intestine to close up (the vomiting). When the doctor came back and said it was Crohn's, we couldn't believe it, but were relieved to have something to work with. Right now he is taking Pentasa 250mg/3x daily, predisolone once a day (slowly reducing), ranitidine 2x daily, and mercaptopurine once daily. We recently finished Canasa suppositories and iron was also recently added. He is more like his old self, but we can see he's in pain at times. He won't say so and he never cried or complained the whole time, leading the doctors to believe that he had a high pain threshold based on the severity of the inflammation. I am having a very difficult time finding information relevant to a preschool-aged little boy. And I don't know what sort of diet for him to be on to help prevent a flare-up. He lost 10 pounds, so the doctors just wanted him to eat. But I feel nutrition is key to helping him stay healthy. I have real fears about what all the meds are doing to his little body also. I'm sorry for a novel-length first post. It was good to get it out! I hope that one of you can recommend some resources to get going in the right direction. I feel totally helpless and clueless, and the worry is really getting to me!
 
I'm sure some of the other parents on here with kids that have Chron's will be able to help you out a lot.
My mom had to take me to the ER a few times when I was a kid and they always said I was constipated and gave me something for it and sent us home.
I was not but that's what they figured it was and I never got any worse.
It was not till I was in my 50's that it got bad, but mom thinks it was the Chron's even back then.
I never got as bad as your son but I remember having pain at times when I was little.
I think when we are really young we learn how to deal with the pain, I'm in my 50's now and have had 2 docs tell me my pain threshold is crazy high.

Hope your son gets better and can injoy his childhood.
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum, I am sorry to hear your little one has been so poorly :hug:

What dose of the Pred and mercaptopurine is he one and when was the MP started? Are regular bloods being done and if so do you know what the inflammation levels are at?

With regards to diet it may be worth looking into something like enteral nutrition, this has been shown to have very good results with kids at calming the tum down and helping getting weight back on. This is liquid only so can be tough but it can also then help when food start to be reintroduced in picking out problems foods to then avoid.

Also please do check out our parents forum as well, there are a lot of mums and dads here to have a good chat with: http://www.crohnsforum.com/forumdisplay.php?f=49.

I will be keeping fingers crossed that B can be feeling fully well again soon.

AB
xx
 
Hi and welcome.
Sorry to hear abot your little son.
I'm from the Parent's forum. My little farm girl is 3 1/2 and still undiagnosed.
She been ill since 6 months old. We're still fighting to get her the proper test. She's not flaring right now so nobody wants to do anything. Please join the parents forum. Their a wealth of info their. Your not alone. Not many people the whole story about Crohn's. Ask question, lots of them. It make this journey a little less scary.
 
I know EN (Eternal Nutrition) was mentioned. Here's a link to learn more about it. Press HERE.

Even if he hasn't lost much weight it's still a great source to get all the nutrients and to let his GI track rest a bit so it can repair it's self.
 

David

Co-Founder
Location
Naples, Florida
Hi there and welcome! I'm glad you found your way here.

I'm so sorry to hear of your little one :( That is so terrible and my heart goes out to you and your entire family. The best advice I can give has already been given. Connect with the other parents in the Parents of Kids with IBD forum we have. They are an amazing and extremely knowledgeable group.

Start reading and educating yourself about every facet of this disease. The more you know, the better you're going to be able to advocate for him. And unfortunately, that's something you're going to have to do for a long, long time. And we're here to help you every step of the way.

*hugs*
 
Thank you so much for the replies! :) It made me feel good that we aren't alone, but I hate the thought of people living with these illnesses. The good news is that you CAN live with it. That has been what I've focused on. @AngryBird: He is on 6-MP 25mg/5ml (5ml once a day) and the prednisolone is 15mg/5ml once a day (this is being reduced by 1ml every week. This Wednesday we will take him down to 6ml once a day.) I got a call from the doctor almost a week ago that he wanted more blood taken because of high amylase and lipase (I think that's spelled correctly-they are pancreatic enzymes), so we took him this past Thursday for that and he will see the doctor again on September 6 and he will have more blood taken then also. As far as liquid nutrition, they did that through his PICC line with a TPN and lipids. They wouldn't release him until he was able to eat and keep it down. They told us to let him eat what he wanted (within reason) and he has gained most of the 10 pounds back that he lost. We haven't really found anything that has bothered him, but then he doesn't tell us if he feels bad. He just keeps going and going! I'm heading over to the parents' forum tonight! He is nearly back to his old self, so I'm thankful for that! @Farmwife: Wow! Not having a clear diagnosis is terrible! We were just so clueless ourselves and frightened about what could be going on. I never dreamed he would have an issue like this. I will be seeing you on the parents' forum and I'm praying you get your answers soon! @David: Thank you for the warm welcome! My doctor actually warned me against forums; he didn't want me to be discouraged by stories of people not being cared for properly by their doctors and so on. But I knew I had to find one to have a starting point. I have been discouraged by the lack of info regarding really young children. And I have never been one to blindly follow a doctor's advice anyway. So I'm VERY thankful to have all of you to go on this journey together!!!

I wanted to know if all of you thought his case was mild. I've gotten that impression from a few people, but to me, it was scary and seemed life-threatening. Especially since he has only been sick one time that required a trip to the doctor. I hope so, because the thought of surgeries and a ton of meds with side effects is what really bothers me, and his being only four and still growing. Thanks again to all of you for the warm welcome!
 

David

Co-Founder
Location
Naples, Florida
I can understand your doctor's concern about forums. There are indeed a fair share of horror stories here. And quite often its the people in remission or whose disease is extremely well controlled and have amazing doctors who never end up here or disappear when they're doing fine. So sometimes you get a bit of a biased view of reality.

On the other side of the coin, there is a tremendous amount of information, support, wisdom, and experience here that can be absolutely invaluable. Communities like this are great for some, and not right for others. To each their own :)
 
@David: I've already gotten some great info and encouragement. I think I'll just keep the forum to myself for a while. :) It's also made me appreciate my little boy's health so far. I know that could change, so I'll take it while I can!
 

DustyKat

Super Moderator
Hi TangieC and :welcome:

I'm so very sorry to hear about your little boy...:hug:

You have been fab advice so I would just like add a link that you may find useful. I don't know if you have seen the thread in the parents regarding useful link but if not you may find some useful contained within it...

http://www.crohnsforum.com/showthread.php?t=35679

As to whether your little one has a mild case is difficult to say. I would normally base that on scope results but then the course of the disease when flaring does have the potential to change rapidly. Based on your story though I personally would be reluctant to say that it sounds mild.

Good luck and welcome aboard!

Dusty. xxx
 
Sorry everyone...lots of stuff going on, so I haven't been able to post in a while. Good news, though...my little one is VERY close to remission!!! Off of his steroids and only Zantac, his 6MP, iron, and Culturelle. Will probably have to do something for CDiff again though. :)
 

Gianni

Moderator
But I feel nutrition is key to helping him stay healthy. I have real fears about what all the meds are doing to his little body also.
I also believe nutrition is the key to this disease :) Here (click that) is why I think nutrition is so important in dealing with this disease. Hope this helps.

Glad to hear your lil boy is doing better.

Gianni
 
Thanks! I appreciate the posts! Do any of you ever have issues with your joints? B started limping this morning. I thought he'd hurt himself, but he never said anything about falling. We sort of pressed on his hip where he said it hurt and he didn't seem to be tender. We just went to the GI yesterday, so it's upsetting that he has something going on NOW, not yesterday :( I asked how to be able to tell if it was a fistula. He mentioned a fever, soreness, redness in the area. So I don't think it's that. But he can hardly go up and down steps or get in and out of the car. He wanted to stay with his grandparents, so I sent his (rarely used) Lortab in case he couldn't sleep. Is this something I should let the doctor know about this weekend, or just see how he is by Monday? Sometimes I'm afraid I'll let something go that IS bad, and call the on-call doctor when it's something that's NOT important. So frustrating!
 

Tesscorm

Moderator
Staff member
Hi TangieC

I'm so glad you're seeing improvement in your little boy!!!! :)

But, the joint pain is fairly common. My son had back pain before being diagnosed and his GI believes it may have been an early indication of inflammation. But, I don't know tons about it as my son hasn't suffered with joint pain specifically. I know the children of Farmwife, Twiggy930, my little penguin and others have had joint pains. I'm sure if you look through the parent's forum or Extra Intestinal Manifestations forum you will find some info.

But, as to whether to call the on-call GI... it's always a tough decision for us parents :ghug: and, really, it shouldn't be! If you are worried, CALL! :ghug:

I hope it's just a one time thing though and he's feeling better tomorrow!
 
I just wanted to add my thoughts and prayers to everyone else's. I hope your little one is bouncing around again very soon. Use this forum...I am amazed at the level of knowledge amassed here, and with the wisdom with which it is provided. Sometimes the stories I read scare me a little, but then I see how helpful and supportive everyone is and my fears are eased.

Good luck!
Lisa
 
He's still limping this morning and since he isn't complaining about it (even though it obviously hurts), my in-laws didn't give him any pain meds. I don't like giving it to him, but I feel like it would be best in this case. He won't let anyone pick him up or help him up or down stairs or anything. I'm glad he's so determined, but I'm afraid he's going to hurt himself! Ugh!
 
And thank you so much, LisaL! I've met some wonderful people through this forum! Looks like I can add another one to the list!
 
Location
Canada
Hi TangieC

Crohn's can cause inflammation in joints and also in muscles and tendons that surround joints. It is an extra intestinal manifestation of the disease.

My son developed joint pain out of the blue one day. One evening he just couldn't put weight on his left leg and he said it hurt around his upper thigh. If he tried to put weight on the leg it would just buckle under him. He ended up using crutches to get around. After a bit of a battle we got him seen by Rheumatology and they diagnosed him with Cronh's related inflammation of the muscles and tendons surrounding the hip joint. They put him back on prednisone and started him on sulfasalazine. By the time we saw Rheumatology he had been unable to walk without the crutches for 3 months but once he started prednisone he was walking again in less than a week!

I know what you mean about wishing new symptoms had been around on the day of your appointment. I swear that happens to us every time! Tess is right, if you are worried just call. You will feel better and it really is their job to take those types of calls.

We tried giving my son Tylenol but it didn't have any effect on the pain. He found a magic bag (rice bag that you warm in the microwave) soothing as were warm baths. We also tried icing the sore area to bring the inflammation down.

If the pain doesn't go away soon the doc to see is a Rheumatologist. Rheumatologists are the "go to" docs for these types of extra intestinal manifestations of Crohn's.

Hopefully your son's leg issue will just sort itself out on its own. If he continues to have trouble getting around we found these crutches to be AMAZING.
 

Attachments

David

Co-Founder
Location
Naples, Florida
He's limping but doesn't complain of any pain and you can't find any tender spots? Are you sure it's PAIN that is causing the issue and it's not an abnormal gait?
 
Farmwife: Praying for you dear! I know you've been through so much with your sweet Farmgirl :) I hope you get some real answers soon!

Twiggy: I will definitely be calling first things Monday to let them know. I have to take samples back to a local lab (ugh! thought I was going to barf!), but B's GI is only there on Thursdays, so I'll just have to hope I can catch him at his main office. He has two others he's with that are excellent too, one is a professor for VA Tech. Dr. C just knows B very well. I'll keep the crutches in mind; I was debating whether he would use them or not. He's VERY determined to things on his own, so if it helped him get around, he might like it. And I can totally see him whacking his older brothers!:ybiggrin: I'm so blessed that B's doctor is such a caring man. He has a child with a chronic illness, so he understands what it's like. Grr to symptoms that manifest after an appointment! I also had to get refills on a couple of things over the weekend and of course they were out of refills! Finally got them, but again, it couldn't have run out after the visit to make things easy, could it? :biggrin: It's something I'll always pay attention to from now on!

David: I wondered that too, but this is out of the blue. I also know based on my own observation and what his GI told us that he has a very high tolerance for pain. The whole time he's been going through this he has not once said he was in pain or complained about what was going on. The inflammation was very bad and it was everywhere from his esophagus all the way to the other end. Thankfully not bad enough to need surgery! Just the day before, at his GI appointment, he was running around and hopping off of things. I thought maybe he had hurt himself, but he was fine until he got up the next morning. Honestly, it's a mystery to me what's going on with him most of the time. If I ask him if he's feeling bad or if something hurts, he just says he's fine. He's said this even after he's been doubled over with what were some obviously painful cramps. So I just don't know :/ He did finally say that it hurt and he wanted a band-aid for it. I would appreciate any insight you may have because I am honestly at a loss :(
 

my little penguin

Moderator
Staff member
Second the Rheumo .
DS sees one for joint pain, skin , and vascular issues.
We love ours .
He does not have arthritis but does get pain as well as limping but no swelling.
Good luck Monday
 
It's his left side. I feel so dumb! I forgot that he stepped on a walnut Thursday night and fell on that side. He hopped up and said he was okay (he was pretty angry with the "nuts" on the ground lol), and went about his business. He seemed a little better today but it was still a little noticeable. So now I'm wondering if he hurt himself when he fell, or it it was a coincidence and he's have some Crohn's related issues. Should I still call his doctor or just wait and see if he gets better or it happens again? He does have a little place on his hip and he says it hurts when I press it. It hasn't slowed him down though. He played with his Awana group at church tonight and kept going even after the other kids wanted to sit down. He was also outside with my in-laws yesterday picking up walnuts and doing other stuff. So, who knows? He is very much a mystery to me!
 
I hope it is just an issue with the fall, not CD related, and he heals super quickly!! Awww...my kids loved awana when they were younger!
 
Has anyone had to deal with Aeromonas hydrophila? (along with CDiff?)

I hope that someone can give more info on this. I googled it and didn't like what I saw. Here's the story...

My son went last week (Thursday) for a follow-up with his GI. After discussing symptoms, he said he wanted to do some stool samples to see if CDiff was still present and how bad it was. He felt like it was definitely still an issue even though B had done a 2-week run of Flagyl. Dr. C said that he would probably have to do that again or possibly Vancomycin (spelled correctly?). A couple of days ago, I got a call from the pharmacy that they were working on his prescription for Vancomycin, so I wasn't surprised. Dr. C's office called today and explained the dosing schedule for Vancomycin, then stated that he tested positive for the aeromonas hydrophila as well. Apparently the doctor wasn't too concerned about it at first, but then changed his mind and prescribed Septra/Bactrim (trimethoprim and sulfamethoxazole) to deal with it. Ugh! I feel like the boy is walking petri dish or something and I need to keep him contained Anyway, they didn't tell me to take any precautions other than frequent hand washing, especially after changing him (pull-ups because we've had a TON of toilet training issues and he has some very smelly and nasty looking diarrhea right now).

So my questions is: Has anyone else had to deal with this? If so, what was your experience and what precautions did you take? It's a little overwhelming and scary. I'm afraid we won't get it under control and he'll end up in the hospital. I'm also afraid to get his recommended flu shot right now.

I searched the forum for answers before posting, and was a little scared when I didn't come up with anything. Thanks in advance!

(I posted this as a new thread, but with so many new threads, I was afraid it might not be seen...)
 
:ghug: Sorry no experience with it just wanted to send a hug. Hopefully someone on the forum can give you their experience.
 

David

Co-Founder
Location
Naples, Florida
I'm afraid this is the first I've read of someone testing positive for Aeromonas hydrophila, I'm sorry it had to be your little one :(

Do you know if it was a specific test for it or if it was simply grown and observed in a culture? I just wonder if others might have it.

I hope the new antibiotics do the trick! With everything he's doing through, I almost wonder if a fecal transplant might be in his best interest.
 
David, I was very surprised that none of my searches on the forum yielded a result. I thought that maybe it was something that was common, or at least not very unusual, for CD patients. I don't know if he cultured specifically or not. I wish I had asked more questions, but I was talking to a nurse, so she may not have had details anyway. I plan to ask at the next appointment in November. I wonder if it's something the doctor has seen before and thought to culture. Anyway, I hate that he's got to deal with it too, but it could be worse. No surgeries or anything so far, so we'll just deal with this. I just hope I can get the dosing schedule right for all of his meds, especially these two antibiotics :) Any info I get I will most certainly share with everyone here. Maybe it will be useful to someone else in the future. My RN friend said that all of this would make him more tired than before and he would probably sleep a lot. I would say his little body needs it. Thanks again!
 

David

Co-Founder
Location
Naples, Florida
That would be great if you could let us know when you find out. I'll try and find time to do some research on it as well and let you know anything I find.
 
Hi Guys - what happened to your son with the aeromona? I just had a stool culture that tested positive for aeromona and my doctor said its not to worry about but when I googled it, it appears it can be something to worry about...?
 
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