Our cousin's DD had issues and was also very private. She ended up being diagnosed with Crone's at age 12, after almost bleeding to death because of her privacy issues. She ended up being airlifted from a remote ski lodge. Just saying, these issues can be dangerous so make sure you stay a step ahead.

Low muscle tone is a common preemie issue but typically (that I understand) that's exterior stuff (the big muscles) not anything internal. For instance DS has low muscle tone, the most common type, which is in his hips. You can tell this because when I lay him down his hips fall like a frog verses having his legs lay with knees up as you and I would. I believe this is normally resolved early in their life though, prior to your son's age (that's a good q for doctor!) My son is totally normal in his activities, he just has more flexibility because his muscles aren't as tight as a normal person. Unless it's an actual "problem" you don't normally worry about the muscle tone thing (it makes it difficult for them to walk etc as infants). So I don't think that's he issue.

I wouldn't make any huge changes prior to DS going to camp aside from avoiding all sugars and dairy and that includes OJ, Lemonaid, etc. Fruit sugars are just as bad as corn syrup when it comes to a chronic diarrhea sufferer.

Then the only other thing I'd do is call your ped right now and ask for a prescription for flagyl. It's an antibiotic that's been on the market for about a thousand years. It attacks bacteria in the gut, especially the low level stuff that causes chronic diarrhea in some (ie in my son). Put him on it for the week and you might be suprised how much it helps him out. It has no real side effects and isn't the type of antibiotic that cleans out all the good stuff with the bad. It's used for giardia and other bowel related bacterias. We were given this by a doc at Johns Hopkins....three years of my son suffering hell and one 30 buck script for this drug and he was cured! We rarely need it now it cured two years of diarrhea hell for him. As the doc told me (she's the top ped gastroenterologist for IBD in infants in the world) "it can't hurt and it could do a world of good". Our dog takes it when he gets diarrhea and again, curred instantly (ok after a few days on it obviously to actually effect a cure, but it is a remarkable change within a day or so).

I almost typed the ugly world of IBD in the previous thread and didn't because I didn't want to scare you (I hoped I was hinting enough). But honestly what goldie is saying is true. Not only do kids have bleeding issues, but they can lose their colons (if diarrhea is embaressing tell him what a coloskony...spelled wrong....bag would be like to wear and I bet he'll cooperate with you on this). There is also a significantly higher rate of cancer of the colon among people who suffer with chronic bowel issues.

I didn't ever plan on giving my baby diet soda. Believe me we weren't going to ever see the inside of a fast food restaurant and I was going to make and freeze is all natural foods. He's now sitting at the table eating cheezits and drinking his six ounces of watered down soda. Sometimes our best intentions just don't pan out, especially with kids with feeding disorders (and bowel issues are common in that group...they don't like to eat cuz it hurts!).

I'd make those two little moves (the no sugar/fruit etc and milk products...I'd not even do non fat hun...can you try vanilla soy or rice?) and the flagyl. Then get the appt with a gastro guy/gal and go from there. I wouldn't push DS on a calendar of his pooh's right now. Just explain why you're making the change, and get his cooperation as well as the meds and then ask him to tell you if it's helped in a few days. Let him to go camp without worrying about the rest of it and then when he gets back go on a more formal tracking of the problem system if you haven't seen a positive change.

Even if these two things "fix" him....make the appt. If he carries a low level infection/bacteria that flagyl cures, you'll want to know why. For DS, milk causes it, any milk, no matter how processed. He's getting better there, but when he was little it was immediately obvious...milk or cheese, immediate and violent stools! I can say YUCK in 17 languages now LOL

Thanks - I'm taking him for hematocrit tomorrow, I'll try to grab the dr then and ask for Flagyl and gastro referral. I just hadn't thought (until last night when I was trying to do more research online) about the ileostomy and cancer issues. MIL had colon cancer and as far as I know didn't have any GI issues prior. My godmother had a bag (for both, had had multiple bladder/sling surgeries) and was housebound b/c of it but she was in her 80's. Hate for that to happen to a young person.

Went out tonight, tried to talk DS into gluten-free menu (steak) but he went with fish and chips, iced tea, *then* finished DD's chicken strips - too much fried food. We said no to dessert even though it came with kids' meals. He says he was fine, but he hit the bathroom as soon as we got home, wasn't in there long but when DD and I walked in to pull her tooth and brush, we couldn't stand it. I pulled the tooth in the kitchen and ran the fan til we could go in to brush.

Goldie - how scary! Did her parents know anything was going on? I haven't seen blood on/in/near the toilet(s) or in laundry so I think DS is OK, he hasn't complained of pain (or itching, so no hemmies/fissures). In fact, he really doesn't seem to have symptoms of Crohn's (like fever, weight loss, etc.), b/c I was thinking that last year and googled it, but who knows what he could be hiding?

You won't actually see blood unless you look at his stools. Blood just appears as dark black spots. It's fairly common in anyone with gastric issues. It can be really bad (as noted above) and it's never a good sign, but our son had it. The longer they have issues the more likely it would be.

No. She was raised solely by her father (our cousin), who traveled quite a bit with his job. Her grandparents would stay with her but she was pretty secretive. She ended up with an ostomy bag when she was 13. She is now pushing 30 and doing great, though she spent a bit of time in the hospital about a year ago.

I think Crone's runs in DH's family - the Italian side. I've heard of a couple other members who had it.

Plus there is a ****really**** foul odor, according to my Sandy. (Mom of Lord Daniel as well as an RN)

Picked up lab request for 7th grade hematocrit, the dr changed it to CBC, saturation rate and celiac panel for me. He also wants DS to do a "breathalizer" test for lactose intolerance before we get a gastro referral.

You might want to ask the physician if immodium would help him while at camp.One half a day or one a day might do the trick. But definitely ask the doctor.
It can be an IBS sufferers best friend when appropriate and on occasion. Heck even dogs can take it( seriously)

Igloo please email me the name of the peds GI doc at JHH. A colleague at work has an infant with GI problems and feels something is wrong and it is now appropriate to go to a specialist.funny she just talked to me today, Yah I know I work for the medical society but you know how many docs there are around here?? Taddy mucho.

I had a talk with DS this AM about the seriousness of this, but he still wanted OJ and milk. Insists there's nothing wrong but had the blood draw anyway (no choice - they weren't going to do just a finger stick for a HCT so I said as long as they're drawing a vial, test for whatever you have to to figure out the GI stuff).

Sue, I'll ask DH as soon as he's home (he's on a plane) so I'll post it tomorrow. Why he can retain that name but I can't...I don't know. Anyhoo, she's with JH proper verses the area we were in, female (ok that's obvious) african american if I remember right...and a specialist in ped IBD under 5. I owe that woman my life and I don't remember her name! Anyhoo, I won't forget to post it tomorrow.

Ehhh screw that I decided to go online and look at all of them and she came up first (she's kind of strikingly gorgeous so I remember her picture LOL). Maria Oliva-Hemker MD

Aj's mama...is this aj that's the problem LOL Gad, there's the problem with an older child. This is a tough issue and so hard on a preteen. I assumed immodiam was in use, so if not, do add that. (We couldn't because of my son's age) it's something and it would help a bit, if only to control the violence of a "moment".

What to do if he won't cooperate? You're challenged there hun. It's almost easier for me because my son is so small he does not yet know it's suposed to be an embaressment. He has to buy in if you are to get him care. You know your son best, but if you make the appt and then consider leaving him with the doc on his own, he might open up more (cuz the gastro guys are used to this). Your ped is ok in ordering that test...but also insist on the referral. It takes time to get in, and if you son is celiac you'll still need a gastro guy so gettting in line isn't going to hurt.

I remember our first ped...since fired. He didn't want to refer. I told him that I wanted to see an expert and he wasn't it. I was going to do so with or without a referral and if he was wrong, could he handle the financial implications in denying the referral. He provided the referral immediately.

I don't remember where you are. If you're near Minnapolis I can give you the name of a great doc there (they have a school of gastroenterology).

Sue:

Here is a link that might be useful: Dr. Oliva-Hemker

Both my kids are AJs (made it easy for handmedowns at first, now not so many handmedowns and DS hates it when I start to call him by DD's name b/c the 1st syllable is the same and I'm so used to having her around - but that's better than when I slip and call him one of her nicknames like "Sweetie" LOL).

Dr will do the referral after results of blood tests (should be back next week). We can do the breath test in the meantime. Nurse warned that Children's Hospital GE dept gets backed up (no pun intended) but if it's going to take us 6 months (or whatever) to get in, 1 week isn't going to matter and they'd prefer that we have test results rather than my suspicions (and his denials) to go on. Dr won't do flagyl.

DS at least admitted that he "may" have eaten too much fried food last night, was better today and promised to take it easy at the pizza party tomorrow. I told the nurse I was concerned about camp food esp. smores and DS said no smores a Scout camp.

Little AJ (DD) is starting to have some issues with whole milk (on the occasions when she has it, in a restaurant or someone's house) and possibly fruit (like when she eats fruit salad - a couple slices of watermelon OR an apple are OK, but hitting the salad bar at a restaurant and eating only fruit for dinner doesn't work out). So I'll be learning from DS's DX and treatment what to watch out for/do for her b/c she's starting to head down that road, though it's nowhere near as bad as he is. *She's* the one who's always passing gas though.

Dawn, thanks I forwarded that to her. appreciate it.

I need to write her and tell her what she did for us Sue. She really changed my life and of course our son's. Just that little script for Flagyl and the consult (which our doc at JH wouldn't allow) and our life changed. She's a wonderful woman. I "forget" her name constantly, but I'll never forget her.

I'd freaking go online and figure out a flagyl script for Mr. Aj (who shall never be refered to as such LOL). As the doc above said, it won't hurt, can't hurt, it's a really basic basic drug with no side effects aside from removing bacteria that does not belong in your body. But I've been down the ped road too much so I'm stuborn. My personal opinion is strong...but you've mentioned that this is a problem and has been....and they won't refer (and yes the wait is long, hence the need for it earlier rather than later) and won't try a basic fix. I'd find a new ped...but I've been down the road as you know :) Gad that makes me crazy.

Every drug has side effects.

Prescribing a drug for a patient always requires a risk/benefit analysis on the part of the prescriber.

Here is a link that might be useful: side effects of flagyl

AJ: I might have missed this, but even 1% milk has lactose in it. There are lots of lactose free products on the market (DD, DS2 and I are all lactose intolerant to various degrees). I'd take both your children off of any lactose products now and see if that helps while you wait for the GI appointment. Milk, ice cream, cheese, yogurt, buy lactose free. If they can take the lactose pills then they can eat some stuff, otherwise no lactose. No mac and cheese, no icecream, no cheese. My DS2 gets diareha after ice cream or pizza, but at age 11 it's a price he's willing to pay!

Again, the 1% milk might be the problem here. Good luck!!

Well, bloodwork came back normal so I'll have to call for lactose test and talk to dr. about referral. I just thought (and mentioned to nurse, but I don't know if she'll tell dr) - we were sick with virus at Valentine's Day, could it be that DS is worse now b/c that's still lingering (or just that his system hasn't recovered from the trauma)?

In the meantime, we'll try going lactose-free. Not that I was hoping for something wrong, but this is frustrating.

Remember that you must give it 10 days before you know if your lactose free diet is working. Both Igloo and I made that mistake with our kids, so learn from us. Poor Max.