Watery stool for 7 weeks! GI is too busy, please help!

[fastestboysmommy]

My 2 1/2 year old son has had 3 or 4 watery stools a day for the past 7 weeks.  In early October I took him to his doc for a chest cold and he was prescribed Bromfed cough syrup.  At the end of October his cough had not cleared up and he started having green mucus and the cough had worsened.  He also had mild diarrhea for a couple of days so I took him back to the office and saw a different doctor who prescribed antibiotics. I expected that the antibiotics would make the diarrhea worse so I made sure he ate plenty of active culture yogurt and stayed hydrated.  After another week or so he still had watery stool so we returned and they took a stool sample and tested for bacteria.  The test was negative so the Dr sayed that it must be a virus and that it would clear up on its own.  It did not, so the next time we took him they tested for parasites, which was also negative.  We returned to the Dr and she referred us to a GI specialist at the children's hospital.  He did not have an opening till January 19th. At that point my son had already lost a pound putting him at 26 lbs.  I waited a week and took him to the ER at the children's hospital because I was tired of watching him starve and he was starting to have some abdominal pain and lethargy.  When they weighed him he had dropped to 24.6 lbs.  They took some blood to see if he was malnurished and they came back fine.  The resident and his attending conferenced with the GI that I had been refered to and he gave more excuses "Oh, Christmas is coming up, we just dont have time" that sort of thing. The resident then told me that "you shouldn't bring healthy kids to the hospital" and sent us home.  Three days later the abdominal swelling and pain had worsened so I took him back to his primary doctor and asked for an xray of his belly.  She also ordered some bloodwork (sed rate) and a stool sample.  The xray showed that his large intestine was extremely inflamed (about 1/3 of abdominal cavity, post bowel movement).  She sent that to the specialist and got him on the phone. He still did not agree to see us in his office but he figured it was celiac and that once the tests were back and confirmed his suspicions then he would order a colonoscopy (not a dr, but pretty sure celiac affects the small intestine). Friday I called to ask about the tests.  There was a hiccup with the bloodwork and it had not been done, but I was told that the stool sample "looked good" so his doc was not going to repeat the sed rate and put him through another blood draw.  So here I am, waiting for monday so I can find out what is next.  To those reading this, his symptoms have been 3 to 4 watery stools a day, distended belly especially before a bowel movement, abdominal pain, very little appetite and pain after he eats, and he is sleeping more.  If anyone can shine any lights for me, that would be really great.  I am tired of watching my son suffer.

[geminigirl1963]

Thank you so much for the update on your son.  I'm sorry you've all had to endure such a horrible diagnosis and then surgery.  How is he doing now?

You are definitely right - YOU know your child better than any doctor could, so when you KNOW that something is not right with your child, keep pushing the doctors to keep checking into things.  The squeaky wheel gets the grease and the persistent parent may just save their child's life.

I wish you all the very best.

[fastestboysmommy]

An update on my son: He was diagnosed with neuroblastoma and they removed a tennis ball sized tumor from his abdominal cavity. The tumor was creating hormones that were causing the diarrhea. A word to parents: you know your child more than any doctor ever could.  If you feel like something is wrong and you aren't getting any answers, don't stop pushing.  You are your child's best advocate.

[geminigirl1963]

I can certainly understand your frustrations and fears.  I probably would have done the same thing you did if he was my child.

Has any of his doctors tried any anti-acid type medication for your son, such as Protonix or something similar?  The reason I bring this up is because of what you were saying are the only foods he will eat now.  It triggered a memory of one of my nieces who had similar "refusal" to eat things that most kids would love, such as sweets, peanut butter and even juices.  She pretty much lived on either plain pasta or alfredo pasta and alos drank lots of milk and ate some chicken, but not much else - not even hot dogs that most kids love!  Anyway, to make a long story short, she was diagnosed with SEVERE GERD and once she was given a medication similar to protonix (I'm afraid I can't remember the exact name of it), it was remarkable how much she improved.  She was a preemie at birth, weighing only 4.8 pounds and had nutritional problems all her life - even on a feeding tube at one point for about 6-8 months - we literally were absolutely THRILLED when she was a baby when we could get her to eat 1/2 of a medicine cup (you know the tiny little ones they bring you meds in in th ehospital) of baby food.  Of course, as babies and children, they really don't know what heartburn is - they only know that when they eat, they hurt, so they begin to refuse to eat - and especially things that they may have really liked before - because a lot of the times, those are the foods that they relate the pain to the most - not necessarily because those foods are the only things that are triggering their pain, but because they are foods that they ate the most often, so when they relate food to pain, they relate those foods to pain.

If you cannot get him in to see the GI doc before his already scheduled appointment, I'd strongly suggest you take him back to his pediatrician and DEMAND that some further testing be done to determine what is causing your son's pain and lack of wanting to eat.  You are his mother, so you know more what is normal for him than the doctors do - sometimes you just have to continue to be that noisy wheel and bugging them before they will finally listen to the person that knows their child the most - YOU.  Stress and stress again how much weight he has lost, how lethargic he has gotten (wanting to sleep more) and how very little he is eating.  NONE of this is normal in a child his age and for them to make you wait to see the GI doc before persuing possibilitlies, I feel is not only poor medical practice, but in my opinion. on the very verge of neglect or malpractice.

also try to find a different GI doc, even if you have to take him to a different hospital to do so - you are so right - it does not sound like this particular GI doc just doesn't seem to care.  

He probably needs to have a more indepth scan of his abdomen than just plain xrays - at the very least a CT scan and possibly both a barium enema and barium swallowing follow-through.  While the xray he had done showed his intestines being inflamed, the scan may show exactly whre the inflammation is originating from.  An endoscopy may also be a good idea where they put a scope down his throat (he's sedated) and they can take a good look at the upper part of his GI tract down into the stomach - that also could confirm any reflux and/or esophagitis that could be causing pain when he eats.  I'm tryin gto remember tests I've had when having GI troubles, as well as testing my niece had when they were tryin gto figure out her issues.  I'm pretty sure they did do an EGD (endoscopy) on her and that was what compltely confirmed the diagnosis for her.  She is now 13 years old and while still a picky eater and will always be small for her age (her parents are not tall or big either, so that's not all that surprising) - she does MUCH better with eating now and no longer has to take the meds.  Her favorites are still her plain pasta and alfredo pastas, but she now eats a lot of fruit, several meats (steak being one of her favorites), potatoes, some vegetables.  She's still not a huge sweet eater, but that's quite ok.  She'll say she wants a sweet now and then, especially when her friends are having them, but typically even with a child size ice cream cone, mom or dad end up eating 3/4 of it because she takes  afew licks/bites and that's enough for her.

NO NEED AT ALL TO APOLOGIZE FOR RANTING!!!  I'm here any time you want or need to rant - even if I can't offer and solid advice, at least I can listen to you talk all you need/want to.

I hope you can get somewhere with these doctors and find out exactly what is causing your son so much discomfort.  This is a time of year he should be able to enjoy all the little "goodies" of the holiday season - he shouldn't be having to lay around tired and not feeling good simply because a doctor doesn't want to take on another patient "because it's the holidays".  That's ridiculous!!

Please do keep me posted on how he's doing and also let me know if I can help in any way.

[fastestboysmommy]

I tried taking dairy away for a couple of days with the intent of trying it for a few weeks.  I supplemented with soy milk, but he just got worse and worse and was eventually just eating a tiny nibble of whatever was offered and then crying in pain. I was so worried about his calorie intake that I decided to wait for instructions from the doctor on how to alter his diet without him starving.  I kind of think that the soy added to his problems because he is back on milk and after a few days his appetite is up (still only eating maybe 1/4 cup of food in a day) and he doesn't seem to be in as much pain. We try not to eat much processed food in our house and nothing changed diet-wise when this all started and it was pretty sudden. I just dont feel like I can restrict him at this point.  Anything that I can get him to eat makes me happy.  He wants nothing to do with pediasure, peanut butter, bananas, ice cream (or any sweets at all) and those are really the things that his ped told me to give him to keep up his calories.  Right now he will pretty much only eat chicken, fresh berries, plain pasta and lots of milk (no chocolate which used to be his favorite thing).  I just feel that this GI just flat out doesn't care and thinks that it is just toddler's diarrhea because we are crazy parents who give our son too much juice.  My son has not had a drop of fruit juice in 6 weeks.  I am not a crazy parent, I am a parent who is going crazy watching my son starve.  I just don't know how to get a medical professional to take us seriously and treat my little boy.  I am sorry for the rant, but I am not completely rational at the moment.

[geminigirl1963]

I'm sorry to hear your precious little one has been having so many troubles.  it's hard enough when we, as adults, don't feel well, but so very frustrating when the little ones we love so much are sick, it's even worse.

I'm afraid I don't have a lot ot offer other than a couple of ideas/suggestions.

Have you tried experimenting with his diet to see if it affects his stool at all?  If he has an underlying food allergy or intolerance, it definitely can at the very least adding to the problem.  Two of the most common allergies/intolerances are wheat (celiac) and dairy.  Both can cause diarrhea (even watery stools), as wel as abdominal pain and bloating.

Really the only way to determine exactly what might be causing the problem is through trial and error.  At first, it'll be very restrictive as to what to give him to eat/drink, but then you can SLOWLY start adding things back into his diet.  it's important to add things back in slowly and only one at a time, because if you try and add several things back in at once, you might end up back right where you started not knowing what is causing the problems.

When I was a child, I also had a lot o ftrouble with watery stools, abdominal pain and distention, as well had many headaches and what the doctors were calling "growing pains" in my legs.  I had been through many, many tests and the doctors really couldn't figure out what was the cause.  Then we moved from MA to PA and my new pediatrician, at my first visit, asked my mom if I had ever been "tested" for food allergies or intolerances.  I hadn't - it was probably one of the only things I hadn't been tested for.  So he gave my mom a listing of things to remove at first - and it was a LOT - made it VERY difficult for trying to pack a lunch for a 4th grader for school!  However, after about a month off of everything the doc had suggested removing, we began slowly adding things back in.  I was perfectly fine with all the wheat products, tomatoes, eggs, seafood - even peanut butter.  However, as soon as we began adding back in dairy products, I became sick again - horrible headaches, as well as all the GI issues came back within just a matter of a day or two.  it was determined that I had a pretty severe allergy to dairy products - NOT just a lactose intolerance, a true allergy.  So, for many years, I had to remove dairy products from my diet and I did fine.  I still do (at age 48) have some issues if I have too many dairy products in a day or over a period of a couple of days - like milk in my coffee and cheese or ice cream in the same day - but I am able to eat/drink some dairy now.

Anyway - I wanted to at least give you a little of the history of what I experienced to let you know just how a food intolerance or allergy CAN affect your body.

Since they have already suspected celiac, I would strongly suggest definitely remove gluten from his diet as a first test.  Also try removing the dairy - it makes grocery shopping much more difficult, I know, because you hae to read all labels and research what other words can be/are used other than the "normal" - wheat, flour, milk, dairy -- you'd really be surprised at how many other words mean the same thing

Once you've removed everything that could be suspect from his diet for about a month (give it at least that long to hopefully let things in his GI tract settle down well), SLOWLY start adding things back in one at a time.  Pretty much the same way you start babies out on solid food - give them one for a few days and see if there is any reaction - any change to his bowels or behavior (sometimes in little ones, just being more cranky or irritable could be sign of a reaction) - and then if that food goes ok, add in aother one.  If you find something that seems to cause a problem - remove it from his diet again, but continue trying to add other things back in.

Of course, during this period of trial and error, it's still vitally important to get him the nutrition that he needs, so you may need/want to supplement with things like Pediasure (again, reading lables to make sure there isn't anything in them that you are trying to test) - even some specialty type baby formulas could be beneficial for nutrition.

Also, in the meantime, give the GI doc's office a call and ask that you be put on a "cancellation list" - many doctor's offices keep these listings so that if they receive any cancellations of appointments, they can call people on the list to see if they can come earlier than their scheduled appointment.  This may be a way for you to get your son in to be seen sooner.

Are there any other pediatric GI docs in your area?  If there are, you may also want to ask your son's pediatrician for a referral to one of those and see if any of them can get you in sooner.  Be sure to have your doctor stress the fact that your son is not only having the watery stools, but has lost a considerable amount of weight and is having incresasing lethargy (both signs that he probably isn't getting the nutrition that he needs).

I also think it's important to have the bloodwork redone to test for malnutrition, dehydration, etc.  Especially in little ones, it may take a while for an discrepancies, low readings, etc., to show up in the blood, so even though it all came back "ok" last time, since he's still having trouble, I'd see about having it redone.  His pediatrician can probably order this without having to go through the GI doc.

I can understand how you hate to see your son suffer like this - I really hope you find some answers real soon and he starts feeling better quickly.  I also hope some of the suggestions I'e given have been helpful.  Please keep me posted on how he's doing.