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Old 05-07-2014, 07:43 PM   #1
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Who wants to play "Diagnose my Kid"?

I will just start this off by saying, "Yes our 7 year old daughter is seeing a doctor (pediatric gastroenterologist), pediatrician, and has been to the emergency room and admitted to the hospital." She is up to date on shots and other than what I am about to talk about seems like other children her age. She is a bit of a tom-boy, athletic, and academically on target.

A few years ago she went to the pediatrician with a stomach ache that lasted more than a day. Doctor said she was distended and took x-rays and said she was constipated. She was to take Miralax once a day. She did until she became un-constipated.

In the mean time, she only has a stomach ache if she runs in a game (soccer) after eating. Easy fix...eat earlier or after.

Fast forward to Jan 2014. Her teacher notifies us her visits to the restroom are disruptive to the class. She says she needs to urinate often. Does it hurt or burn? "No." We were watching her closely. Seems off so we take her to have her blood sugar drawn and urine tested. Results are not diabetic and no UTI. Doctor says she is eliminating and that is putting pressure on her bladder. A week or so later she has a stomach ache and stays home from school. Everyone has some sort of stomach virus so I think she must have it too. Next day she is crying about it off and on. Next day she is crying and does not want to do anything at all. Pain level is a 5. I call the pediatrician and they tell me to go to the children's hospital clinic because it is after hours on a weekend. I call the clinic and they tell me to take her to the ER. At the ER she gets blood work, CT scan, xrays, and sonograms. They check her appendix, gallbladder, kidneys, bladder, liver, pancreas, etc. All look good. The hospital thinks she may have twisted intestines, blockage, or inflammation. They admit her for further tests and to clear out her system. She gets an IV, NP with golightly, and an enema. She is not allowed any food or drink. Her poor little body eliminates everything and she is released later that day with a referral to the pediatric gastro. She is to take Miralax 2x a day. A week later she is in to see him and he does an EGD and a colonoscopy with 15 biopsies. He finds nothing visually and the pathologist indicates the biopsies are clear. I guess they can see allergy cells because the doctor said they were not present either.

She is still on the Miralax. She also takes an antiacid and bentyl.

We took her off of gluten and dairy. Pain level seemed to decrease. She ate some gluten by mistake and had no issues. Starts up eating gluten again. Easter she tries cheese and pain is up again. So she is back to no dairy. She has not had any since Easter and the past 3 days her pain is back up. I had her gastro doctor's appointment moved up and she is on the list to take any cancelled appointment.

I am just lost and frustrated. She is missing a school, soccer, birthday parties...she is afraid she will make others sick but really does not feel like going to school either. She is also afraid she will have an accident while out in public. I do not think this is mental or a control/power issue. She still feels the need to urinate often.

What the heck?!
Urinates all the time.
Constipated.
Pain is a 5 at the highest and stays at a 2-3.


On a side note, her dad has Celiac disease and was diagnosed 6-7 years ago.
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Old 05-07-2014, 07:48 PM   #2
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Has she been to an allergist yet? Do you pack her lunch? We are pretty much on an elimation/whole 30 type of diet with my son. School lunch KILLs him.. any processed food kills him..
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Old 05-07-2014, 07:52 PM   #3
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Poor thing! I don't have any good guesses except a food allergy of some sort, or perhaps a congenital problem that has yet to be diagnosed? I feel for all of you and hope you get answers ASAP!
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Old 05-07-2014, 07:58 PM   #4
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*editing original message*

Right before she went to the hospital she threw up for a week. Vomiting and pain is what sent us to the ER.
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Old 05-07-2014, 07:59 PM   #5
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Didn't know it at the time, but when I was a kid, I had IBS issues, stress triggered. My mother was convinced I was faking it, but I remember sitting in school almost crying from the stomach pain. I now know that some of it was also food related~ mostly lactose intolerance~ but stress was a large factor. Nuns will do that to you!

She needs to be tested for food allergies. If she has one parent with Celiac, then there may be a connection. I remember my father never ever went out of town without a bottle of Kaopectate!

Last edited by Nady; 05-07-2014 at 08:02 PM..
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Old 05-07-2014, 08:07 PM   #6
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Nuns!

Okay getting her into the allergist!

We do pack her lunch. She only drinks an occasional Sprite (no other soda). We eat less processed food than an average person. I bet we end up going 100% whole foods.
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Old 05-07-2014, 08:19 PM   #7
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Quote:
Originally Posted by greenbean View Post
Nuns!

Okay getting her into the allergist!

We do pack her lunch. She only drinks an occasional Sprite (no other soda). We eat less processed food than an average person. I bet we end up going 100% whole foods.
But some 'whole foods' cause a reaction too~ I can't eat wheat~ whole or otherwise. Gives me eczema. Each body makes it's own rules~ doesn't matter what some expert says is healthy~ Perfect example~ wild caught salmon makes my joints ache.
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Old 05-07-2014, 08:21 PM   #8
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Allergists don't catch everything. Try an elimination diet.
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Old 05-07-2014, 08:23 PM   #9
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Quote:
Originally Posted by Nady View Post
But some 'whole foods' cause a reaction too~ I can't eat wheat~ whole or otherwise. Gives me eczema. Each body makes it's own rules~ doesn't matter what some expert says is healthy~ Perfect example~ wild caught salmon makes my joints ache.
I recently read a book called "The Plan" that is an elimination diet. The author said salmon is a very common allergen that people rarely figure out.
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Old 05-07-2014, 08:25 PM   #10
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Have you taken her to a pediatric nephrologist? I would insist to her doctor that she be referred if she hasn't already.

Her symptoms really seem to match Voiding Dysfunction. Here are the symptoms:

Incontinence (urine leakage) during the day and/or night - often is the first sign noticed by parents that there is a problem
Increase in urinary frequency and/or urgency (the need to void immediately)
Urinary hesitancy, dribbling, intermittent urine flow and/or straining at urination
Pain in the back, flank or abdomen
Recurrent urinary tract infections
Blood in the urine
Infrequent urination – three or fewer voids in a 24-hour period
Constipation and fecal soiling

Really good paper you should read. http://www.ucdmc.ucdavis.edu/urology...DF/Wetting.pdf
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Old 05-07-2014, 08:49 PM   #11
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High fructose corn syrup can cause digestive problems, and bladder pain and spasms.
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Old 05-07-2014, 08:53 PM   #12
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My son has a wheat and peanut allergy. Before we got his dx we thought he had cancer (no lie - he was just like a walking dead person). As soon as we got his allergies dx and eliminated them, it was like watering a flower. He literally came back to life.

He said he never knew life any other way; he was always experiencing some mild discomfort somewhere.
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Old 05-07-2014, 08:58 PM   #13
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What are her stress levels? Are things at home OK? I am not ruling out physical but also need to look at the complete picture.
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Old 05-08-2014, 12:36 AM   #14
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Just a guess - has someone looked into interstitial cystitis?
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Old 05-08-2014, 05:15 AM   #15
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Chrystee: Did you follow a book for the elimation/whole 30?

Charski: I hope it isn't congenital! I know we have to look at everything though.

Nady: I am sorry you went through IBS as a child. That is just terrible. I am going to call my allergist today. I agree with you that each body makes its own rules, it would be so much easier to diagnose it they didn't!

GME- I will check out "The Plan". She is going to HATE not eating what she wants.

greybb1- She has not been to a nephrologist. I had to go look that one up! I am going to request some of the standard tests while we are waiting to get an appointment. I am going to ask her questions about leaking. She has 3-4 of the symptoms of Voiding Dysfunction that you mentioned.

Queen Mab: I try to avoid high fructose corn syrup but ugh that stuff is everywhere! That seems logical too eliminate.

RunForYourLife: She eats peanut butter everyday! Glad your son feels better. Sounds like she needs to eliminate that too.

Melrose: Her stress levels are not perfect. She has an 11 year old special needs sister that is undergoing some great challenges right now. I know these challenges are hard on me and dad so I can just imagine what it is like for her. They each have their own room and the 7 yr old shares our bathroom just to avoid conflict with her sister. The 11 yr old has monthly psyc appointments and weekly psychologist appointments. It is so bad this week she will have an emergency psyc appointment today (she is medicated). The 7yr old is calm and rational. She has good grades, friends, sweet, outgoing, and appropriately silly.

Arctic_Mama: I had to look up interstitial cystitis! I will talk to the nephrologist about it.


Thanks yall. This help means so much to me.
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Old 05-08-2014, 06:23 AM   #16
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Take a look at this website: Slow Transit Constipation (STC)

It describes 'slow transit constipation'
basically the muscles in the colon do not move as they should and create lots of problems.

good luck
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Old 05-08-2014, 06:23 AM   #17
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Greenbean, you have a lot going in and I hope you get some answers soon. Sending you good thoughts for strength.
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Old 05-08-2014, 07:26 AM   #18
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Nothing to add but (((hugs)))
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Old 05-08-2014, 07:52 AM   #19
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Not to underplay her pain, but are you sure she's not doing it for attention? With what you described with her sister, she may be feeling left out.
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Old 05-08-2014, 07:55 AM   #20
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My son used to have bladder and intestinal problems when he was much younger. For the bladder spasms I was told to keep him away from the 4 Cs-citrus, chocolate, carbonation and caffeine. It helped some but we also had to used medication. He was also extremely lactose intolerant, a speck of dry cheese in a packaged food could set him off. Thankfully he outgrew both of these by middle school.
For what it's worth, he's also bipolar.
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Old 05-08-2014, 07:56 AM   #21
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*hugs* ditto about going to see an allergist.
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Old 05-08-2014, 04:45 PM   #22
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I read The Plan as well. Whole30 would be a good one too. Let's face it any elimination diet is going to be a challenge. But, if she wants to feel better, I'd think she'd be willing to try. If you explain that something she is eating my be making her sick, I'd think she'd be on board.

Has anyone mentioned probiotics? If it is gastrointestinal, that might help too. First thing I would do is an elimination diet. Good luck, I hope you if d some answers!
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Old 05-09-2014, 08:46 AM   #23
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I called the nurse at the gastro doctor again for some suggestions.

Allergist appointment is June 27th and she is on the cancellation list for anyone who cancels between now and then. I called a few other allergists and found some don't take children and one had to order in the testing kit for food allergies and 2 had appointments in July and August. The allergist she has an appointment with is my allergist so I guess we are waiting for that one now.

So I talk to her last night about the pain because she was hurting (same questions we typically ask) and asked her if it was a a sharp pain or dull? It is a dull pain that feels a little better in the evening.

I had her push on my arm to show me what the pain feels like and she pushed steadily down on my arm with the palm of both hands and did not let up.

I checked her stool and it does not look hard, color is normal, no blood in the stool, and not too loose.

She has no fever but does seem more worn out than usual and she is doing NOTHING all day long other than laying in bed/couch sleeping, watching a little television, getting up to get water and food.

No headache, sores, or bruises. Still eating and drinking. Coloring seems a little pale but not gastly white.

I felt around on her stomach and it seems soft and normal. I know if I press too hard on the side or in the middle it will be tender though. When she went to the hospital I could feel fluid and her intestines would make a sloshy sound on the side. When the doctor would feel around she would cringe from the pain.

***Thank you all for the support. It means so much to have another viewpoint.***

Izzybeff: I always wonder about how her 11 yr old sister's behavior/actions effect her. I know the 11 yr old is wearing us (mom and dad) out so I know our 7yr old feels the stress too. I don't believe it is attention seeking though. I try very hard to be fair with time with both of our daughters.

Gladsome: I will check out the website. Thank you.

Snowangel9: She does take liquid probotics. Natures Life Blueberry Pro-96 Acidophilus Probiotics. It is dairy/wheat/corn/gluten/artificial coloring free. I think she would be okay with the food elimination eventually.
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Old 05-09-2014, 09:10 AM   #24
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My first thought is how awful for your poor little girl to have go through so much! It makes me want to cry. Colonoscopy and 15 biopsies??? Ugh. I can only imagine how hard it must be for you and your husband to have to go through this and not have answers for her yet. Hang in there-you're obviously working so hard to get her healed.

I really have no suggestions that haven't been mentioned. Gut issues are really hard, especially in kids, because they don't always have a way to articulate what's going on, and doctors sometimes brush them off as psychological issues. We have neighbors whose son was diagnosed years ago with mitochondrial disease, and I seem to recall some of the the symptoms being similar. I hope it's not that, but has anyone mentioned that to you in any of your appointments or consults?
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Old 05-09-2014, 11:40 AM   #25
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Are baking LC stuff with Xylitol or any of the other artificial sweeteners? They can cause heck with adults and can be really bad for children in large quantities.
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Old 05-09-2014, 09:11 PM   #26
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earthcrosser: No one has mentioned mitochondrial disease. She has only been to her pediatrician, gastrointologist, and the children's hospital. I am making a list so we can look at anything it might be and figure this out. Thank you for the suggestion.

Silverlynx: We don't allow our girls to have artificial sweeteners. I know she has on the rare occasion had sugar free gum or a light yogurt but I would guess that has to be less than 10 instances in her life. We really limit any weird dyed food too.

Thank you both for the ideas.
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Old 05-12-2014, 02:25 AM   #27
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Genetic Testing
When an individual is diagnosed with celiac disease,
the entire family learns that they must be tested on
a regular basis for the condition, for they are now at
risk. First degree relatives (parent, child, sibling) have
a 1 in 22 chance of developing celiac disease in their
lifetimes; in second degree relatives, (aunt, uncle, cousin,
grandparent) the risk is 1 in 39. Only lifetime screening
can help family members reduce the long term impact of
celiac disease and facilitate a quick diagnosis. They learn
that regular antibody testing is necessary because celiac
disease is a genetic condition and could appear again in
the family at any time.
You do not have to have been eating gluten for the testing .

I will be praying for your children and family
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Old 05-12-2014, 01:16 PM   #28
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You mentioned dairy as a possible trigger. Did she perhaps get some in a food that you don't realize has dairy? My daughter has terrible problems with milk but can eat cheese just fine.
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Old 05-14-2014, 09:41 PM   #29
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Thank you again for the input and private messages. I have been reading again tonight the information you all are suggesting.

Just an update- Our daughter had xrays yesterday morning to see what was in her intestines from the night before. She has an appointment with the gastrointologist on Friday.

I do have a question...if you were in this situation and did not need a referral would you go to a urologist or nephrologist? Is there a doctor that does both?
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Old 05-17-2014, 04:29 PM   #30
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Wednesday's xrays showed she had full intestines.

The doctor wanted her on 8oz of magnesium citrate for 3 days and more xrays on Monday. She hates the magnesium citrate.

She is having an MRI to check for nerve damage and congenital defect and a test that checks for sphincter muscle control. She is taking a nap. I kept her home from a family party and visiting her great grandmother because she has a low fever and a sore throat and of course the need to run to the restroom often.
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