Need some help with my 4 old who has something wrong with her tummy =(

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
May 29, 2012
Messages
4
I wanted to see if anyone could let me know if their children have experienced any of these symptoms. My daughter has had chronic issues with stomach pain since the day she was born. I started out breast feeding and she had so many problems with constipation and diarrhea that I switched to formula and eventually we found out she had a protein allergy so she was put on a special formula which helped. Once we started her on baby food she started having constipation/diarrhea problems again. We stopped giving her baby food, (which I made from scratch and it was all organic) because she was so impacted we figured we would give her system a little longer. We started about 2 months later and the same problems continued. Throughout multiple trips to a GI specialist my daughter was 10 months old and she was on miralex, 2 tablespoons 3 times a day plus her diet was anything and everything that helped with constipation. She did pretty good for about a year and then it started back up again and this time it was much worse than before. Her poops are so large that I would go to the hospital if mine were ever that large, sorry for the info but its extremely large. Whats weird is that she will have diahhrea for several days where I get worried about her being dehydrated and then all of a sudden she is constipated. Last week she had runny green diahhrea starting on Sunday and going through Wednesday. She complained of her stomach hurting, which she does pretty much daily but it wasnt super bad. Thursday she started complaining of it hurting and by Friday she kept trying to go to the bathroom but it was too large for her to pass. We finally gave her a suppository Friday night and again it was huge. I don't understand how someone can go through diahhrea for several days and then be constipated to the point where its 3 inches in diameter and almost 6 inches long, and keep in mind this is a 4 year old. Since Friday she hasnt pooped again and tonight we will be giving her another suppository because she is in so much pain all she does is lay around, she barely eats and she just wants to lay on the couch. She also has ran chronic fevers all of her life and no doctor has been concerned until recently. After 5 pediatricians I finally found an amazing one and he has been checking into everything. She gets sick all the time and has had every bacterial infection you can think of and has developed asthma. He has been so amazing and check her immune system and found out that she did have an immune defiency. He has no idea what is causing the fevers and pooping issues and he ended up referring us to an infectious disease doctor who then said we need to go back to the GI specialists. I have my appointment in 2 days but I am so concerned with this pooping. She keeps getting tears because of the size of the poop and I feel so incredibly bad for her. Has anyone had any of these experiences??

All of her health problems are:
Chronic constipation and diahhrea
Chronic fevers normally in the range of 99.5 to 100.5, once or twice a week it *will spike to around 101 occasionally up to 102. We have kept fever charts *for almost a year and even take her temp rectally. Her fevers rarely go *away even with tylenol or motrin.
Stomach pain which gets severe at times where she doesnt want to play or *eat and she will start sleeping way more than normal.
Her stomach also gets really large, some days her shorts wont even fit her because her stomach protrudes out so big. She looks pregnant at times its so big.
She also has a slight case of malrotation, her intestines aren't in the right place and if they were to twist she would need immediate surgery. She just had an xray 2 months ago to make sure that the intestines were still okay. The infectious disease doctor wants her to see the GI doctor again and suggested another MRI with barium to check it thoroughly like they have done in the past.
She has had multiple allergy tests and is only allergic to rye. She was allergic to more as a child but has since outgrown them. She has had the tests where they prick the back, prick the arms, and blood work.
She also has had blood work done to rule out celiac disease and many other diseases and conditions.
Her blood work has also indicated inflammation somewhere in her body but the doctor said it may have been because she was sick. She was sick and on antibiotics for almost 6 months because of a staph infection.

I know this was long and I am sorry for this...I feel like all her symptoms have to go together somehow but no one has been able to figure it out. 2 doctors have mentioned chrohns disease but they said its mostly diagnosed in teens or early adulthood. The infectious disease doctor said although its diagnosed later on in life the patients say that they have had problems their entire life.

Any information would be appreciated. I want to be prepared as much as possible because we need to figure something out. Its so bad that she was constantly sent home from pre-k so we had to pull her out again. I am worried that when she starts school again she is going to be sent home frequently.

Thank you!!!
 
Hello! I think I can help you!

I, like your daughter, have had the same issues when I was born(still do, as you can see). I have been seeing a GI since I was 2. My parents used to chase me around the house with suppositories when I was 3 & from the time I was 1 till about 5 years old I was going to the ER every 2 days with back to back fecal impactions. EVERY 2 days.

I had my firs scope at around 4 years old & they told me I had "IBS with constipation".
Since then, I have had several mini flares but after my Gallbladder removal at age 12, I experianced excruciating joint pains & stomach pain. I was finally diagnosed with a severe case of Crohn's almost a year ago. I am 15. I have lost 90 pounds since last year & that is what prompted the doctor's to quickly help me. My parents have been my health advocate since before I was born(thank God!) & I would suggest you be the same. Keep telling the doctors to run tests(especially a scope. It can be done at your child's age) for as long as she has "tummy" problems. I hope she get's better!
 
Hi and welcome!

I also I'm a mother to a beautiful farm girl named Grace she is 3. Believe it or not our stories sound about the same. Even down to the infectious disease specialist. You came to the right place. I, like you I'm trying to find answers to why my little girl is NOT right. I was made to feel by doctors and even family and friend I was reading to much into her situation. Two and a half years later here we are and only getting worse. We have our first GI appointment in early June.
We have a parent forum you should join. I love it there. A wealth of knowledge I've found in the parents that make up the forum.


I hope she gets better soon. Please feel free to pm if you like.


Farmwife
 
Hi there and welcome! I'm so glad you joined but so sorry to hear of what your little one is going through. That must be so hard :( My heart goes out to your entire family.

I think our Parent's of Kids with IBD forum (be sure to check that out) is full of parents who would take great offense at your doctors not testing for IBD because of your child's age. Now, she doesn't necessarily have IBD but many of the symptoms fit. And they need to exclude it with proper diagnostic tests not, "She's too young". And for the love of all that is holy, don't let them give her an IBS diagnosis unless they've done every test in the book and made up a few new ones.

Again, welcome. We're here for you. Be sure to check out the parent's forum. There's even an "undiagnosed kids" thread for you to check out.

*hugs*
 
Thank you guys for the responses. I am going to check out the other forum and try to get as much information as I can prior to her appointment. I have also had several people telling me that I am reading too much into it but as it has been getting worse more and more people are realizing the pain and problems we go through health wise. Has anyone experienced fevers with these in kind of symptoms? I have always been told its a cold or fever. Her pediatrician, who is absolutely amazing, is the only one who believes that her fever isn't related to a cold or virus. He is stumped as to what is going on. Also has anyone dealt with diarrhea and then immediately after constipated. I don't understand how you can go from one extreme to the next???

Again thank you guys so much for the support!! My daughter was also slightly premature, and a half weeks. I was in preterm labor at 24 weeks and was on a lot of medicine. Part of me worries that the medicine may have caused whatever is going on but I have no clue. My husbands family does have stomach problems but not to the extreme of my daughter.
 
Yes, fever isn't uncommon with IBD.

As for the diarrhea and constipation, that's not all that uncommon either and there are a variety of possible explanations. One is that she never really stops being constipated but some diarrhea is able to get past the impaction from time to time. Think of it as your sink being almost completely clogged but a little water is able to drain past the clog.
 
Thanks David!! After reading a lot on this forum I am not sure that my daughter has crohns...I guess if she does its in the early stages. I know that is something is wrong because no matter how much medicine we give her to treat the constipation it doesn't stop. Even as an infant she was on an incredible amount of miralax and everything she ate aided in constipation. Something else that is strange is that her poop color changes all the time and it doesn't seem normal. Orange, bright green, dark green, and black at times. Sometimes the smell is so bad I can't stand to be in the bathroom with her and I have to flush the toilet just to help her wipe. The stomach pain she experiences is so terrible at times. Monday and Tuesday all she did was lay around, even with kids around. We had a Memorial Day celebration on Monday and all of her cousins were there and she spent 90% of the time laying down, then again the same with yesterday. We gave her a suppository last night and she finally perked up. This morning she is also doing better but she has terrible gas and her stomach is still really protruding which leads me to believe she still has some poop in there.

I feel so terrible for people with Crohns, the disease is so terrible. My heart goes out to all these families and individuals battling through the problems.

I hope her doctor will run some tests and not wait until its more serious, I feel thats the worst thing doctors do on a daily basis.

One other question..After reading through a lot of posts I have found that a lot of kids with crohns seem to get a lot of bacterial or viral infections, one being mono. My daughter has had mono and a slew of other bacterial infections. She has had RSV, (which she almost died from and almost 3 years old), she has had staph infection, e-coli, and chronic sinus infections. Is there some kind of link where crohns lowers your immune system?

Thanks again for you advice and help, I appreciate it so much!!!
 
I sorry she's still struggling.:(
Yes, Yes, Yes. Grace catches every thing and anything. She's been dealing with sinus infection for months now. She can't have any antibiotics yet because she had a c. diff..
Grace has constant constipation. although when she does go the stool is soft. Loose stool has never really been a problem for her. From birth to 1 we had to give her suppositories to help her go. She then went a year or two with no problems with stool, then lately constipation again. Her stools are also green, yellow and orange and brown. That has to do with how the food is going through the bowel.
I hope that helps a little.:ghug:

Farmwife
 
Oh I was told not to do Motrin. That can irritate the bowel and actually cause more problems.


Farmwife
 
I'm not 100% sure why some people with Crohn's Disease get so many other diseases. One theory is that many with Crohn's Disease are deficient in vitamin D which is incredibly vital to a healthy immune system. Another is that Crohn's patients usually have an abnormal response to pathogens. But in the end, I'm not really sure and it's probably a combination of many variables. Others might have better ideas.
 
FarmWife....That makes since about the Motrin. We have never understood this but she seems to get incredibly irritable when we do give her motrin. As an infant we noticed this and the doctors said it was just a coincidence and that something else was bothering her. We don't give it to her a lot because of irritable she becomes after taking it. Since she has been having chronic fevers the doctors have said that we can't continue just giving her tylenol so I am curious to think that maybe the motrin that we have been giving her is making things worse. Her symptoms come and go as most people on here have described. As she gets older they seem to be getting worse. She has always been extremely tall and growing like a weed but the past 2 years she hasnt gained any weight. Occasionally she will loose 5 pounds and then eventually she will put the weight back on. Her stomach is so protruded at times that we have size 6 shorts for her to wear. If her stomach is flat then the sixes are way to big and we go back to the fives. Its so strange!!

I have been learning so much from this forum, everyone on here is amazing!!
 
It does sound like Crohn's. But I am no doctor. However, I am on my second Crohn's disease doctor in a year. I just am not getting to where I want to be. They don't seem to treating the whole disease.

However, I was in a lot of pain and feeling nausea, she didn't seem to want to believe that it was Crohn's because I don't have the typical bloody loose stools. So she claimed I had IBS because of the constipation and acid re-flux. But she decided to call for a bacteria test and lactose intolerance test. I did have an over growth of bacteria... and they put me on ...an antibiotic for a month and it has helped.

However, my issues are more with awful joint pain, weird skin pustules and fistulas. Unless I had the colonoscopy, I would still be at ground zero. So be patient and get a good doctor. I am actually working with a rheumatologist.
 
ALSo one other thing -periodic fever disorders can cause inflammation during a flare- some symptoms are the same as IBD but some different. SOmething to talk to your doc about.
 
Do post you story in the parents forum. There are a lot of parents who may not have seen your story as they usually stay in that forum.

I am putting a called out to Dusty, who has been just wonderful to myself since I joined the forum when Sarah was dx.
 
Thanks for tag Catherine. :)

I'm so sorry to hear your little one is going through all this, bless her. :hug:

What is the not in the right place issue she has with her bowel?

As others have suggested, there are certainly symptoms she has that could be attributed to IBD. I see you are tracking her temperature, are you also tracking her other issues and symptoms?
Have a look at the suggestions we have in the wiki and see if anything rings a bell. Also tracking everything may help lead to a diagnosis...

http://www.crohnsforum.com/wiki/Diary-Inclusions

Since she is already positive for non specific inflammation request a test for faecal calprotectin as that is specific to inflammation in the bowel. If that is positive, or even if it isn't and symptoms persist then perhaps it is time for them to consider more aggressive/invasive testing in an attempt to gain a diagnosis.

As to people with IBD being more prone to picking up other illnesses, as in infections, well I don't know that is true when they are in remission, my two certainly don't but I can see why it would and no doubt does occur when you are flaring. You already have acute/chronic inflammation occurring that the body is constantly trying to rid itself of so it will lower your ability to fight off anything new on the scene. Picture IBD as the enemy and your immune system as the army trying to defeat it. The army starts off hard and fast but as time goes on the soldiers start to get weary so they have to call on the reserves then they start to flag as the enemy becomes entrenched. On and on this goes then all of a sudden another enemy arrives (a new infection) but you have no reserves left to fight a new battle so the new enemy gets the upper hand.

Dusty. xxx
 

Latest posts

Back
Top