Help my 11 year old daughter

[norjoly]

My daughter is an 11 year old who has suffered with constipation her entire life, also bloating of her stomach. Continuious bowel movements throughout the day.  Has been complaining of joint pain in her legs, arms, and shoulders.  Hungry all the time, developmentally delayed.

[norjoly]

After contacting my daughter's doctor yesterday (which took two day's before he returned my call) I could tell he knew I had finally had it.  We have been seeing this same doctor for the past five years, and in that time I have been saying the same thing over and over again.  Now that my daughter has been complaining of joint pain, I am not just going to let it go.  When I called him, I told him I have had enough, and something has to be done.   I told him, it's not just her constipation, it's also developmentally delayed, low muscle tone, appetite never satisfied, and now joint pain!!!  ENOUGH IS ENOUGH!!  Do you know what he said?  "Has she ever had any Genetic testing done?"  Don't you think that's something that he should already have known?  No, you've never sent her for anything like that!  He said, sometimes it could all be connected.  You've got to be kidding me!!!  Than he says, maybe we should start from scratch with our little friend.  So, now on July 3rd, finally he will be checking her Kidney, and Liver functions, do some blood work, and other testing.  I feel as if I have failed my daughter by not doing something sooner.  I would love any information you could give me, especially the name of the Professor of Pediatrics at the Cincinnati Children's Hospital in Ohio.  I am so sorry that you've lost your son and grandson due to negligent doctors.  It makes me sick.  I can not thank you enough for everything that you have shared with me, and your true concern.  I may not have a doctor's degree, but I know my daughter, and I have that motherly instinct that there is something terribly wrong.  I will never give up, and now, I will not stop until someone can help us.  My daughter is 11, and she has suffered long enough.  All because of a doctor who just has not been listening to our concerns.  I would like to keep you updated with her results.  Hopefully we will get some answers this time.  Thank you, thank you so much.  

[mammo]

Has your daughter ever been evaluated by an Endocrinologist? I am on these blogs due to "bad doctors" and to encourage people to always get a second or third opinion.  If I had done this, my son and grandson would still be with us.  I trusted that if their doctors didn't have the answer, they would find it, or refer me to someone who was more knowledgeable, they didn't.  I took my son to the Cleveland Clinic, and asked a prominent surgeon why they didn't do this, and he said "their ego's won't allow them to, and sometimes they just don't want to lose you as a patient."  I've seen it all when it comes to negligent doctors, and it infuriates me to read a story like yours where there is obviously more going on with your daughter than the doctors care to look into!  While she is suffering.  I don't know where you live, but Cincinnati Children's Hospital in Ohio is the premiere pediatric gastroenterology unit in the country.  It would be nice if you could get there for an evaluation on your daughter.  I can give you the name of the Professor of Pediatrics there.  I no longer have my son or grandson due to negligent doctors, so please keep looking for answers.

[mammo]

I don't blame you, there's reason for concern.  I've been thru this kind of frustration with my son and grandson. I'm concerned that her bowel will become lazy due to the constant use of a laxative and not work properly when she stops using them.  Have you tried Miralax?  It works very well, is not a stimulant, and you can take it as long as it's needed.  Has she had a colonoscopy and endoscopy?  Have they tested her stool for bacteria and parasites? Has her colon ever worked properly? Is she over weight from the eating?  Please let me know and let's go from there.

[norjoly]

Thank you.  Yes, we have seen a few GI doctor's in the past 11 years.  My daughter has been on Polyethylene Glycon, a perscription laxative for three years, and Milk of Mag.  If she does not take it, her stomach becomes extremly bloated and extended.  She eats continuiously from morning to night.  As soon as she's done eating, five minutes later she will say how starving she is.  But what has me concerned is how she says that it hurts to walk on her leggs, or that her arms hurt.  I'm at a loss, and feel that the doctor's that we have seen don't seem to think it is a concern.  The doctor feels that her rectum is just so stretched from constipation, that it will take several years of laxatives to keep her cleaned out, and then her rectum will form back to normal, and all will be fine.  But it's not fine.  I worry with her retaining old stool day's at a time, that she has gotten some kind of infection throughout her body; and that is affecting her joints, appitite and that somehow it is all connected.  

[mammo]

Has your daughter been evaluated by a pediatric GI doctor?  This is where I would start to determine why she is having the problem with her bowels and bloating.  Plus, it sounds as if she may not be retaining her food long enough to benefit from it, and this is why she is hungry all the time.  Continuous bowel movements throughout the day can also be de-hydrating her.  This happens easily in children, and can be helped by drinking orange juice or gatorade.  Usaually nausea is the first symptom of this, but I have to wonder if her joint pain isn't the result of this along with loss of vitamins and minerals.  I would get her to a GI doctor and go from there, best of luck to you.