Advice - 6 year old, currently being tested..

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New Member

Date Joined Oct 2008
Total Posts : 2
   Posted 10/3/2008 7:59 PM (GMT -7)   
Hi everyone,

This is super long, and I'm sorry for that. I've just had nobody to talk to about this really. I've got a son who is 6 (our surprise blessing..... our other two are 18 and almost 16)
We've been on a long, long journey to what looks like will dead end to Crohn's. It could still NOT be Crohn's, but I'm not holding my breath.......

Oh geez, where to start? This has been going on with him for at least 4 years, if not since birth. I have always thought that there was something wrong. He started having a lot of belly troubles, which he was able to express to us at about age 2. He would be in pain, crying, vomiting, then be fine. He would go from starving like a lunatic, to being anorexic. It never matched though, it's never 'I'm hungry because I haven't eaten'... Arugh... I can't even really explain it. Sometimes he would be so tired, others he would be fine. I asked the doctor about it, and because of my daughter (now 15) who is insulin resistant, we checked his insulin. It was fine, but still I couldn’t feel that it was ok. A couple years ago, it got worse. Doctor thought we needed to work on what he eats. He wanted me to add protein. We added protein, but it did nothing. We eat pretty good, since I started Weight Watchers years ago. Not perfect, but not horrid either. It got worse and worse for him. He would be sleeping and he’d wake up crying, and we’d get a bucket, and he’d vomit. Sometimes once, sometimes a few times. Sometimes he'd be playing, start crying or screaming in pain, but once he vomited, he was better. I remember one time I thought for sure he was in the beginning throes of food poisoning. He vomited a couple times, then got up and wanted to go back outside and play! I thought maybe he had cyclic vomiting syndrome or something. It was obviously not that, but I was looking for an answer. Finally it got so bad that we wouldn’t leave the house without a bucket. We’ve got them in easy to reach locations throughout the house and we have a perfect car size one. Also with this, but less noticeable to me because he's so 'bathroom private" is that sometimes he'll have Diarreah, sometimes he'll be constipated. After the two weeks of straight bucket carrying was when I went back in to the doc and said I was done, and we HAD to get this figured out!!!!

We were sent to a GI doc. She palpated his belly and said he was impacted. Severely so. She did an x-ray which confirmed it and had me give him Magnesium Citrate. Bottle one, nothing. Bottle two, nothing. Bottle three, finally a small bit of movement. She also wanted me to add even more fiber to his diet, as well as a cap of MiraLax a day. So we went back in for another x-ray which showed nothing much had changed. As well, the fiber GROSSLY worsens the massive pain he's in. After a good while, the mira lax does help to help him have a poo a day at least, but it doesn’t seem to help his belly pain, or vomiting. It seems to soften what he's going through, but it doesn't solve the problem I guess is the way to explain it. She had him do an Upper Gi, which seemed fine, but because of the x-rays she did some blood work….. nine vials worth! It came back with something abnormal so she did a cat scan. That was the most recent. Now, due to the results of that which showed wall thickening at the end of the small intestine and the beginning of the large intestine, as well as some lymph nodes, we’re going for the colonoscopy and endoscopy with biopsy as well as the endoscopic camera pill. I did ask her what it could be and she mentioned the Crohn's, but said that it could be an infection or blah blah blah blah...... (at a certain point it all became mumbo jumbo.. Through all this, I'm dealing with my own newly diagnosed epilepsy)

His testing is on the 17th, though I called them today (too late I guess) to see if he could get in next week instead as last night was just such a bad night...... Oh he was in so much pain....

I’m not sure what to think, I don't know what to expect and I have no idea how to talk to him about this. He's so young. Our surprise blessing he was...

I would just appreciate any advice or information. I've read so much on the internet, but personal information sometimes is just so much.... more.

Thanks everyone!!

~Mom to my "I'm 18 now and can do whatever I want" son

~Mom to my "I'm almost 16, can you pull some money off the money tree so I can have a super sweet 16 party?" daughter

~Mom to my 6 year old surprise blessing "Mommy you're my best friend" (which is what the other two said at one point!) son.

Regular Member

Date Joined Jun 2004
Total Posts : 226
   Posted 10/3/2008 8:46 PM (GMT -7)   
Hey so sorry for you. I am 19 years old and this sounds how my crohns started. Never had the D always the constipation. Went thought tons of tests didnt know what was going on. He is probbaly hating all the nasty tests. I will get back yo you with any questions but right now stay strong both of you. Sorry for bad reply friday night at college ..ya knoww hehe

Veteran Member

Date Joined Apr 2006
Total Posts : 1665
   Posted 10/3/2008 8:53 PM (GMT -7)   
welcome and I am so sorry you have to be here. please keep checking back and asking questions. there are many moms and dads here who can be a great support to you. yp
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.

Veteran Member

Date Joined Jul 2005
Total Posts : 733
   Posted 10/3/2008 9:06 PM (GMT -7)   
I'm so sorry you have to go through this, and my heart goes out to your little boy!! I've been through a lot with this disease - not as nearly as much as some people here - but enough that I know what I would do if I was in YOUR shoes.

1. Test him for food allergies, especially gluten/wheat. If they're going to be doing biopsies during all of this anyway - I would request that a biopsy be taken for Celiac's disease. This testing can be expensive, but it can save him SO much pain and agony. Drugs can't fix you're body if you're continually exposing it to what makes it sick. Find out if anything there is the culprit. (you can see a segment called "Mystery diagnosis - celiac disease" on youtube if you want a general "primer" on the subject)

2. Have a doctor/GI that you feel good about. This process is as emotional as it is physical, and you're going to carry a lot of that on your shoulders being the mom. You need a doctor that makes you feel comfortable, gives you the information the way you need to be given information, and one that ends a visit with you feeling secure and safe with your game plan. If you feel rushed, talked down to, or frustrated for any reason - you're going to be spending your time thinking about THAT instead of thinking about your son's treatment and the task at hand. Don't put yourself through that. Once this initial round of testing is over - if you need to - shop around for a doc that feels right. It may sound cheesy, but it's true. Remember - YOU pay THEM.

3. And last but not least... WHATEVER they tell you - get a second opinion. Bodies are tricky, and sometime a set of symptoms that mean nothing to one doctor, paint a vivid picture for another. Have another pair of eyes go over all his test results.

Wishing you the best of luck....
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson

Veteran Member

Date Joined Jun 2008
Total Posts : 1058
   Posted 10/3/2008 10:27 PM (GMT -7)   
I don't know how he is about pills - I don't know if I ever had pills at that age - but he should have a multivitamin and some probiotics. The multivitamin is necessary to help with impaired absorption. Especially important is B12. If a person is deficient in that vitamin for a long enough time, you lose the ability to absorb it and then weekly injections of B12 are necessary. The probiotics are one of the more useful aids in dealing with gut problems. They don't interfere with any other treatment, they're completely safe and they offer a host of benefits. They can help with regularity, reduce pain, displace bad bacteria and provide a number of nutrients as well. A probiotic containing several Lactobacillus bacteria species is a good choice - look for one that needs refrigeration and contains L. casei (not an absolute necessity). Yogurt from the stores will contain lactose which may cause him digestive troubles, so that may not be good for him. I agree with patientspiders about the gluten testing, but even with negatives for all the tests she mentions, it is still possible that he reacts to gluten. There is something called "microscopic" lesions which are not visible to the scopes and so will likely be missed when they take biopsies. It is worth trying a diet without gluten for a week or two to see if it helps. It is surprisingly difficult to avoid gluten, but if that helps, it is worth the effort.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 10/4/2008 4:50 AM (GMT -7)   
Hi You need to know what's going on in the bathroom is he passing blood?My problems started in the TI too. If he is impacted the stool has to come out somewhere hence the vomitting. Low roughage diet might also help as it is easy to digest. A stool softener might help ,hope the little guy feels better soon. Also see you have some health issues yourself and I know that can add more stress at times. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still gail

Regular Member

Date Joined Aug 2008
Total Posts : 467
   Posted 10/4/2008 5:37 AM (GMT -7)   



As a crohnie myself, the most difficult thing I have ever experienced was when my beautiful 6 month old granddaughter (Andi) required GI surgery. Knowing the little looks and distortions on her face were GI pain for a week (my daughter thought I was nuts) prior to the blood filled diaper that helped Doctors make the call to use tests that led to her diagnosis was by far the worst thing I've ever experienced. A young mans privacy is very important, but his health is too. Possibly you could tell him you need him to not flush so you can see how much and what kind of movements he is producing,

  I mostly wanted to remind you to take care of the Momma. You are right, at this age you are not just his best friend, but his Goddess and every thing else to him. He really needs you so please take extra good care of you.

   I hope and pray your son's issue is something mechanical that can be repaired, Andi Kay is none the worse for wear. She is now a healthy 4 year old with a "zipper" on her tummy that was used to make her well.

    I wanted to suggest that you watch for iron fortified products. Andi and her younger sibling both cease to digest anything after they consume cereals or other products with added iron. We replaced these items with some from health food stores that contain elemental Iron.

  I am praying for you and your child. I hope you get answers soon. OK I'm going to shut up now, from your post I can tell someone did a fine job and you don't require any Mothering, I just wanted to remind you to be good to yourself. 


Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reiters-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 10/4/2008 1:22 PM (GMT -7)   
All really good suggestions so far. Keep in mind that the boards are slow on the weekend, so just keep checking in. There are several posters who were diagnosed when they were young and will have more advice for you I am sure. One suggestion I have is to ask if you can have blood work sent to Prometheus labs. The testing isn't always covered by insurance, but it is a good indicator for CD.

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.

Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

Veteran Member

Date Joined May 2003
Total Posts : 2481
   Posted 10/4/2008 1:36 PM (GMT -7)   
So sorry for your little one. If it turns out to be crohn's, I suggest you cut out all sugar and processed food (including commercial bread). That alone will help with the inflammation and pain. Also, many people here go on a gluten free diet but natural sourdough bread is also well tolerated.

An easy to digest all natural diet is most helpful with crohn's disease and varies according to how bad the symptoms are. I'd definitely get him tested for food allergies: dairy, eggs, and wheat/gluten.

I hope it turns out to be nothing too serious. Take care.

New Member

Date Joined Oct 2008
Total Posts : 2
   Posted 10/4/2008 3:34 PM (GMT -7)   
Wow you guys are really great!! What a wonderful source for support!!!!! Let me try to reply.... LOL. I DO LOVE LOVE LOVE his doctor!!!! Like I said, this has been going on for <u>such</u> a long time. His GI, once we were finally sent to her, is wonderful. We went for the first visit and waited in the waiting room. We waited and waited and waited.. and waited some more. Once we went into the room, however, I realized why. She spent time with us. She took the time to actually talk to us, find out what was hurting him, how it was hurting him and then gently examine him. She has listened to me, as his mother, and not just taken 'her word as doctor' to be more important than me.... and what surprises me most, is that each and every time I call, SHE calls me back. Each time there is a test result, SHE calls me back. When she calls, she asks how he's doing. When she called last week and asked how he was doing, I told her he had had a bad weekend, she wanted to know about it. (His belly was extra bad and he had had a few vomiting spells.) I just can't go on enough about her. I do feel blessed. One other thing is that if she is going to do a procedure, she want's to be sure she'll only have to do it once, so she does it thoroughly. Like the blood.... she ordered all the blood work she may need, so that he wouldn't have to go back.

It will be sooooooo hard to get him on a specialized diet.... Not because it's something I mind, but because it's just so hard to get him to eat when he should that I get him to eat anything he can! Almost anyhow. Also, we have Valarie on a special diet because of her insulin resistance, and me because of my WW. We'll all be on different diets, and that runs a lot of money. LOL!! Not to mention with my epilepsy, the issue of memory and organization is right on the top of my trouble chart. <sigh> I know it won't be impossible. I just hope that I can have a nutrition specialist to help out for a bit with it. Oh and I WILL watch for iron! I never thought of that. I used to be a fiber freak (I still am for myself) but not for him!!!! If I give him fiber it almost seems like he's going to explode backwards the pain is so bad!!

I love the 'zipper' connection! I would totally use that. LOL But, how often is surgery a requirement? What would warrent surgery??

Oh and as far as his 'potty'.... since going to the GI, I have been getting him to let me check it more often. He still wants to flush it before I get in, but mostly I think it's out of habit. He's gotten a lot better. And no, I don't believe that I've seen blood in it. IF there is blood, it's too little for me to see without inspecting it. The doctor hasn't taken a sample so I don't know.

And he is GOOD about taking pills. He started taking pills at the age of 3 because he HATES to take liquids. I don't know how big he can go.. the biggest he's taken (that I can remember) is the Zithromax. I did have him take some probiotics when he had diarrhea really bad..... my memory is sensing that that was an important event, but I can't remember.... (OMG I really really HATE this memory problem!!!!!!!!!!!!!!!!!)

What is gluten in? How would I go about a gluten free diet??

Okay, I think that's it for now. And thanks again all. I feel pretty darn lucky to have found this forum!!!

Oh and to John510, happy studying!! Send some of those 'study vibes' to my 18 year old college freshman who could stand to STUDY A BIT MORE!!!!!!!!! :o)

~Mom to my "I'm 18 now and can do whatever I want" son

~Mom to my "I'm almost 16, can you pull some money off the money tree so I can have a super sweet 16 party?" daughter

~Mom to my 6 year old surprise blessing "Mommy you're my best friend" (which is what the other two said at one point!) son.

Veteran Member

Date Joined May 2005
Total Posts : 511
   Posted 10/4/2008 4:02 PM (GMT -7)   
Hi Kim and welcome to HW. I'm so sorry to hear how sick your son is. I don't have any advice but just wanted to give you big (((Hugs))) and hopes
all these test find your son some relief real soon!!
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone-  I am off of it!!   YAAHH!!! :-)   
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg every day
                           Wellbutrin twice a day
No Surgeries

Veteran Member

Date Joined Aug 2007
Total Posts : 990
   Posted 10/4/2008 4:47 PM (GMT -7)   
Hi LL and welcome! So sorry your little guy is having a rough time! I'm glad you've found a great GI!

Although my son had symptoms when he was your son's age, they were mild and didn't get worse until a little over a year ago when he was ultimately diagnosed. We use a team of GI doctors at one of the top children's hospitals in the country. I like the doctors I've met there, but am sad that none of them even mentioned the possibility that dietary changes could potentially help. Thankfully I learned about The Maker's Diet and the Specific Carbohydrate Diet (SCD) right here on this forum! Though I know it isn't the answer for everyone, it sure has worked for us!!!! If you care to read further, pick up the book "Breaking the Vicious Cycle" by Elaine Gottschall. It explains the SCD. Also you can go to

Gluten is the protein/starch part of the grain of wheat. Other grains like barley and rye also have gluten. The SCD is gluten-free and promotes healing by removing the bad carbs in the diet that feed the bad bacteria in the gut. Probiotics, as others mentioned here, might also give your son some relief. We consume it in both capsule form and also in the SCD "legal" yogurt that I make.

I will keep your little guy in my prayers and hope you get lots of answers soon!
Mom to 16 year old boy diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Gradually learning/using more SCD recipes, too! (cooking challenged)

Regular Member

Date Joined Oct 2007
Total Posts : 289
   Posted 10/4/2008 6:27 PM (GMT -7)   

Oh,good luck to you guys. I would definately see a Pediatric GI. I have some concerns with my 8 yo son,he has stomach "issues" sometimes,but says that he sees "white in his poop" sometimes,so I don't know?? The Pediatrician said we will just keep an eye on him for now.


hang in there,and keep us posted wink

Regular Member

Date Joined Jul 2007
Total Posts : 239
   Posted 10/4/2008 6:53 PM (GMT -7)   
My son has had tummy problems all along too. He is now 11, but was colicky as a baby, had belly aches when he was a toddler, had fecal impaction when he was about 6 and again last year. He had major cramping and constipation with added vomiting last year, abdominal tenderness, he ended up in the hospital for a couple of days. (Got out 2 days before I had to have a bowel resection due to Crohn's, that was a busy weekend!) We went to a Pediatric GI who did an upper endoscopy and lots of blood work. He took a stool sample, no blood, and said more fiber and miralax and milk of magnesia every day. The fiber made him worse too, more bloated, constipated, more cramping. His waves of cramping pain are a lot like mine and I've been very worried about crohn's. But he eats no problem usually. The doctor put him on Bentyl, which is an anti-spasmodic that I also take. It's been a year now and his pain seems to have disappeared. We're praying that he grew out of it, but the doc said to call if problems reoccur. I understand the fear and what you are going through. Just know you are not alone in all this, and we'll be praying for you and your son!
diagnosed w/Crohn's 11/06. 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bentyl, entocort, vicodin as needed, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Active disease back, darn it 8/08. 11 year old son with IBS-C, on Bentyl.

Regular Member

Date Joined Aug 2008
Total Posts : 467
   Posted 10/5/2008 1:03 PM (GMT -7)   

   Thank God you've found a good Doctor. The one who Diagnosed my Crohn's talked to me for 45 minutes before she ever touched me. I knew then she was somebody special to me. 

                                                  turn   yeah   turn         

    What is the WW you spoke of. I remember you were having trouble with sezures, is this related?                                                          

    My main point in the previous post was that sometimes children experience things that can be repaired and forgotten about, as opposed to lifelong illnesses. Please don't fear things that have not happened yet, today is plenty to deal with for now.
   In 2002 when I was diagnosed with Crohn's, I started the SCD because a remedy find web page posted results of a poll or something that rated the SCD at a 7.8 in effectiveness, but a 9.6 in difficulty(rough numbers from memory of a 50yr old Crohnie).The second best rated at the time was a Prescription drug, that was rated at a 4.2 in effectiveness(again a rough number). When I read a book written about the SCD, it seemed to ring true to me, so I gave it a chance. My husband of 35years suffers from insulin resistant metabolic syndrome X. In 1995 his insulin levels ran approx. 6X normal, but he was unable to absorb the insulin, or process the sugars. His blood sugar had ran > 300 for 4 years prior to this in spite of the oral drugs. He was ready to go on Insulin shots when I read about the insulin resistance issue (Dr. Weil I think) in 1995, and asked my husbands Internal Med. Doctor about it, and he implied it was a Hoax. I fired him on the spot and made an appointment with a Internist who had treated him for Grave's disease in the 1980's. The first thing he said to my Hubby was "How long have you been Diabetic, and do you realize that you are insulin resistant. My MMM's  (Macho Mexican-American Male) chin fell to the floor.(He was still pouting at me for firing his other Doctor) This wonderful Doctor was able to stabilize his blood sugar, and insulin levels to a great degree, and protect his vital organs from the damage these issues are associated with. From 1995-2005 we had reasonable control with Avandia and Byetta. Through 2005, 2006, 2007, into 2008 his A1c ran 4.7-5.3 on Avandia and Byetta. He was not eating a total SCD diet, by any means, if he asks the grown kids(4 all living nearby)  for a burger he gets it, but he continued to slowly improve, and the Doc's slowly decreased his meds. He was removed from all meds  in Feb.2008. He may very well go back on a low dose of meds in the future, but any break from the side effects of these is a blessing. The SCD utilizes many foods now believed to be low glycemic index foods, as in the "specific carbohydrates' it supplies . You may be aware of the glycemic index, if Valorie (your older child?) has Insulin issues.

   At any rate, my long winded point this post is that time permitting you may want to read Breaking the Vicious Cycle by E. Gottschall, you should be able to check it out at the library. She was a biochemist whose child had Ulcerative colitis, and she took another persons idea a step further in helping/feeding her ill child, with amazing results. It gives a wonderful overview of the body's method of processing carbs and sugars. You may find this helpful in feeding Valorie and your "Surprise Blessing". Also, if you have not already, check into a good book about the glycemic index. These will give you good background after you get a diagnoses and when you see a nutritionist. I learned a great deal from the Dietetic students who I have worked with in the health food industry, they are writing papers on the cutting edge of all this, and some of the veterans in the field are learning from new research also. I am not a Dietitian, but they are  open minded as a group overall, and I pray you are able to work with one.  

  In the mean time also I would urge you to shop the outsides of the store. Whole foods, meats, vegetables and so forth, time permitting. Also avoid anything with enriched flour, and all things sweet, except again whole foods. A little juice is OK, but fruit is sometimes better tolerated with the fiber intact. Anything with fiber needs to be introduced slowly starting with small amounts. If you must sweeten his foods, honey may be a good choice for now.

  Search Gluten free on the net. Gluten is the protein in Wheat and Barley. It is everywhere, even in cheese you buy shredded or cut in cubes. Many GF foods are available in health food stores, but they are costly. You will become one of those label readers if you try this, but you will find more foods marked "Gluten Free" in  regular food stores in the future. 

Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reiters-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!

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