# 5 year old suddenly NOT potty-trained



## MyHappyPlace

I am SO frustrated. Our 5 year old daughter has been potty trained since she was 2. However, about 2 weeks ago, she started wetting herself at school EVERY day. I tried talking to her about it, but every time I bring it up, she puts her hands over her ears and clams up, won't say a word about anything for hours. She finally told my husband that it was because she couldn't open the bathroom door in her classroom. So we talked to her teacher who assured us it would be left open for her. The next day, she wet herself again and this time, the teacher told us that she had even asked our daughter multiple times if she needed to go potty because "she looked like she did." I know our daughter has an awful habit of grabbing her crotch when she needs to go, so I'm sure she was doing this in the classroom. Anyway, she kept saying no and eventually peed her pants, AGAIN. 

I bought her pull-ups to wear at school as this seemed to be the only place it was happening. She hated the idea, and got really mad so I told her she could try one more time to get through the day or she would have to wear them. She tried, she failed. I started sending her in pull-ups and looser clothes so nobody else could tell. She still peed every day, but at least it wasn't getting into her clothes anymore, and other students couldn't tell. I would change her into panties as soon as we got home. I keep trying to talk to her about it, but she won't talk to me. 

Now, she has started doing it at home too. She acts like she's embarrassed when we find out, but as soon as she gets into dry clothes, she acts like nothing is wrong. I've told her that she is going to have to wear pull-ups at home too. I never used pull-ups to train her in the first place. As a SAHM, I just kept her home and naked for a few days with a training toilet in whatever room we were in. It worked well, and quickly. In less than a week, we were done and the occasional accident only happened in her sleep. We always told her it wasn't a big deal and got everything cleaned up. She stopped having any accidents at all long before she was 4. So I really don't understand this sudden behavior!

I hate putting her in pull-ups as she seems to think it's a free ticket to ignore the restroom all together now. However, we are currently living in a hotel (have been for 3 months) and I can only do laundry once a week instead of every day. I simply cannot NOT put her in pull-ups as I would run out of clothes for her within a few days.

If this had started when we first had to move into the hotel, or when she first started school, it would make more sense and I would probably be more understanding and patient. But as it is, nothing new has happened to cause this in the past few weeks. I simply don't know what to do anymore!!


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## Bellavista

That must be so frustrating for you. If there is no obvious issue that is causing the sudden regression, it might be she just finds it easier.

I have a granddaughter who stays with us for holidays and some weekends, she has just turned 7. She often wets her pants because she does not like to stop what she is doing to go to the toilet. It does not seem to bother her at all when she wets her pants. If we see her grabbing herself, we can tell her to go to the toilet and she will insist she does not need to go, we actually have to take her hand and move her away from what she is doing and make her go.

I have heard that sometimes a urinary tract infection will cause little girls to start wetting themselves again as well.


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## Unique Username

Potty Training Regression - The Parent Consultancy

7 yr Old Daughter is wetting her pants - Parenting Children (6-12) - MedHelp

hth

I would also consult her pediatrician


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## mablenc

Agree with UU you need to take her to a doctor, this is how a friend of mine found out her son had diabeties. It could be anything from social anxiety to UTI. I hated using the bathrooms at school they were cold and loud and I heard Bloody Mary stories. 
_Posted via Mobile Device_


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## Homemaker_Numero_Uno

Well, she needs the medical checkup of course, as allergies as well as UTI's will cause sudden reversal of continence, and as the bladder is a muscle, it will remember to do what it last did...and if that's just release when it's full or feeling full, regardless of ever being potty trained, that's what it's going to do.

Having gone through child's incontinence x 2 (one was a tethered spinal cord, and in the 4 years it took to have it diagnosed I became a bit of an expert on child incontinence...) and the other one was allergies/constipation and maybe stress as well.

With our daughter, I suspect it's the hotel living and whatever circumstance brought you to the hotel living. If she changed schools or teachers, that's another issue...whereas also if home changed but school did not then school is seen as safer place to act out...I wouldn't expect her to have a lot of personal insight into why she is peeing herself. The body kinda operates separately from the mind at that point, when it comes to stress or illness. Kids will lose continence or develop odd tics and habits or even rashes when what they need to talk about is beyond their comprehension and vocabulary. Tell her you believe her if she says she isn't doing it on purpose. Even if in the beginning she was, by now her body has taken over and she will need to learn muscle control again... I think it will take a specialist... try pottymd Potty Training | Bedwetting Alarm | Child Constipation Solutions | Potty MD | Toilet Training | Waterproof Bedding | Vibrating Watch | Potty Watch which sells incontinence products but has a bunch of legit MD advice (the guy who owns the company is a pediatric urologist I think) on child incontinence...you can also look at sites with similar information through Boston Children's Hospital or Mayo Clinic (just google.) There is also an APA chart for evaluation and treatment of primary enuresis (never toilet trained) and secondary (regressed.) 

It's not the end of the world. You will figure it out eventually. But for now, deal with the obvious which is not stressing about it and taking care of the health end of it by following all of the recommended dietary changes (no juice!!!!) and keep a log of accidents and diet/fluid intake, etc. so you will have something for the doctors.

You would do well to ask for a voiding evaluation as well as a bladder ultrasound. It might not have anything to do with psychological or diet issues, but a growth or something like that. Children's muscles and valves and nerves develop at different rates causing the whole system to go akilter sometimes as well. It may in that respect just be a passing thing.


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## MyHappyPlace

Thank you all for the advice and links. Unfortunately, due to the medical overhaul, a specialist is out of the question right now. Her coverage was lost and the pediatricians around here will not even book an appointment unless you have insurance. 
With the long weekend coming up, I'm thinking of attempting to just retrain her the same way we did it before. I'll keep her naked or in just panties and by my side for 96 hours so I can monitor every movement. She actually made it through today with no accidents so I've been sure to give her major praise and rewarded her with a special treat this evening before bed. As this is the first day in over a week that she's made it a full 24 hours, I'm really hopeful that this means whatever was going on is coming to an end!


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## Blueapple

Is she still pooing on the toilet every day or has that stopped as well? My 5 year old son was extremely constipated (did not like using other people toilets) and the backup of poo in his bowel was pressing on his bladder and he was wetting himself occasionally. It took a while and medication to soften the blockage but all went back to normal.


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## bevixnz

My 5 year old Daughter is sometime just too busy and distracted and forgets. Just playing too hard. Also happened with my older child around that age.


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## looking for clarity

At the risk of being alarmist, could some one be abusing her? This can be a sign of sexual abuse.
_Posted via Mobile Device_


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## turnera

My first thought is it's an emotional reaction to not being happy with her situation. Could be she thought the hotel was temporary but is now realizing it isn't.


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## mablenc

MyHappyPlace said:


> Thank you all for the advice and links. Unfortunately, due to the medical overhaul, a specialist is out of the question right now. Her coverage was lost and the pediatricians around here will not even book an appointment unless you have insurance.
> With the long weekend coming up, I'm thinking of attempting to just retrain her the same way we did it before. I'll keep her naked or in just panties and by my side for 96 hours so I can monitor every movement. She actually made it through today with no accidents so I've been sure to give her major praise and rewarded her with a special treat this evening before bed. As this is the first day in over a week that she's made it a full 24 hours, I'm really hopeful that this means whatever was going on is coming to an end!


have you asked her if she is unable to hold it? if it burns to pee? does she not like the bathroom at school?


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## MyHappyPlace

She is absolutely NOT being abused! When she is not at school, she is in my care at all times. Don't think you were being an alarmist, unfortunately it happens all too often. My niece and nephew as well as my Goddaughter have all been victims of abuse which is just one more reason I am happy to stay with my kids all the time. You never know where the danger lurks.

She is not having any accidents with her bowels and is still going consistently.

She had another accident at school today.  Bummer. I asked her if we could please talk about it and very calmly told her that I was not angry with her but that we needed to discuss it so I could try to help. At least she didn't slam her hands over her ears this time! She looked so meek and terrified it broke my heart! At first she said that her belly wasn't telling her when it was time to go. But after discussing it more, she decided that it wasn't that she didn't know WHEN to go, but rather that she didn't want to stop what she was doing and was forgetting to go. I told her that no matter what she is doing, she needs to go as soon as her body tells her it is time and that she will not get in trouble or miss anything important. That she can just resume whatever she was doing as soon as she's done. For the rest of the evening, she jumped up and ran to the bathroom on her own. Including while I was in there. She busted in and says "Mommy! I have to pee right now! Can you please be done?" lol Each time was rewarded with high 5's and praise. 

Tomorrow is a new day and we will try again. She was told that if she makes it through the school day dry, she can pick the restaurant we eat at tomorrow.


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## 45188

My 5 year old son is doing the exact same thing. he gave the exact same excuse. DO NOT PUNISH HER! It'll make things worse! I still haven't found the cause, but I did find a solution. I tell him to go potty every hour. I homeschool, so no issue there. Maybe you can ask the teacher to ask the kids if any of them needs to pee now and then. A teacher should understand at that age, sometimes they need to be reminded.


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## MaBi123

looking for clarity said:


> At the risk of being alarmist, could some one be abusing her? This can be a sign of sexual abuse.
> _Posted via Mobile Device_


This was my first thought too. I don't have kids, but I have heard trauma like this causes kids to wet themselves.

You might be sure she's not being abused...but I was abused and my mom was also sure I wasn't. I was abused by a close family member who she trusted to be around me and who she never would have thought would abuse me. 

There could be someone at the school, a teacher, a janitor, or even another student. I read somewhere that a third of kids are sexually abused by someone around their own age. That was the case for me.

Sorry for sounding paranoid, but you never know.

From your last post though it sounds like the problem may be resolved. I hope that's all it was.


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## MyHappyPlace

So she made it 2 whole days without any accidents so I got a movie she's been wanting out of Redbox. Another day without accidents and she got to keep it an extra night. She absolutely loves the movie so daddy promised her that if she makes it a full 7 days (just 4 more to go) he will buy her the movie to keep forever. She's thrilled!! 

My concern is that we are going to see an accident Monday and she'll be devastated. I cannot figure out what the problem is at school. We have talked to her and her teacher repeatedly. She is very tiny and opening the door on her own is problematic so we thought at first that she might be embarrassed that she couldn't open the door on her own so wouldn't go. So the teacher made sure that the door was open at all times and I stayed after school with her to practice opening the door from the inside. It is easier for her to twist and push with all her body weight than to pull it open towards her, so we thought we might have fixed the problem. Didn't help. Her teacher, whom she absolutely adores, starting asking her repeatedly throughout the day whether she needed to go or not. She always says no but then comes home with a wet pull-up. 
She told me again that her body isn't telling her when it's time, but I reminded her that she has been doing great all weekend so her body must be telling her. She then changed it to her body doesn't tell her at school. The only thing I could think to tell her was that her body WAS telling her, but she was just too busy having fun to listen. 

I think that on Monday I will go in with her and make sure she tries before settling into class. They have breakfast in the classroom so I will have her try after breakfast but before going to her seat. Then I will go back at lunchtime, have lunch with her as a surprise, and encourage her to try again before going to recess. That will leave 3 hours until school is out and we'll try again before leaving the classroom for the day. I'm hoping I can establish a pattern for her to always try at specific times and more or less, train her bladder. Wish us luck!


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## Bellavista

All the best MHP, I hope it all works for you. It can be a frustration, but you seem to be working with your daughter well to combat the issue.


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## MyHappyPlace

Thought I would revisit this thread to give an update... and it's long! This has been deemed a medical issue, but no specifics yet. The incontinence continued to come and go until January. January 25th, she was admitted to the hospital with extreme right flank pain, an extremely high and dangerous fever, and a white blood count more than 3 times than "normal". They did an emergency appendectomy and when surgery was over, told us that wasn't the problem. Her appendix was perfectly fine and healthy, but they removed it anyway since they were already in there and she didn't really need it anyway. For the next 3 days, they couldn't break her fever and only kept it controlled with constant medication. They did every test on her they could think of, except for any kind of scans. They ran respiratory tests, blood tests, urine tests, kept her hooked up to an IV. All to no avail. Her fever finally broke and after staying gone for 24 hours, they released us with absolutely no answers as to what caused this. 

February rolled around and she started the urinary incontinence. Within 2 days she had a raging fever and pain in her right flank. I took her back to the hospital. They took her temp, said they couldn't do anything that I couldn't do at home and sent us home with a bill of $1,400. She never even made it past triage. 

We changed pediatricians and the new doc got all of her medical records. Informed us that as of her hospital stay in January, our daughter was EXTREMELY anemic and started her immediately on iron supplements. She ran more urine and blood tests with no resulting answers.

March came and the urinary incontinence hit a few days before the fever and flank pain. We noticed a pattern. This always started between the 20th and 25th and lasted 5 days... We didn't bother going back to the doctor. Our baby is terrified of them now. All they do is poke, prod, and stick her with needles, but never come up with any answers. We controlled the fever with Tylenol, Motrin, lots of cold showers, popsicles, and wet cloths. The school called CPS and the Sheriff's on us. They came out, heard the story, said they didn't see a problem as we obviously knew how to keep the fever controlled as well as they could at a hospital, and went on their way. We pulled her from school and enrolled her in an online school so I could teach her from home.

April, she turned 6. Had a fantastic birthday with all her friends that we kept in touch with from school. By now, she is seeing the doctor weekly. We kept a thermometer with us at all times starting the 18th... nothing happened. No fever. No incontinence. No pain. We thought we were okay.

May 3rd she wet herself. May 5th everyone felt fine, we went to the mall and had a great day. We were all exhausted and took an early afternoon nap. H and I woke up to our daughter SCREAMING in pain with a fever of 107.1 I immediately jumped in a cold shower with her (clothes and all) while H grabbed the meds and called the doc. We got an emergency after hours appointment. Within a few minutes, I've got her temp down to 104. By the time we reach the clinic, she is down to 101. We have wrapped her in wet towels to travel. The doctors lament that I probably saved her life with the shower and immediate meds instead of trying to get her to a hospital first. They take more blood, more urine. They make an appointment for the next day and start calling specialists.

At the doctor's office the next day, they triaged her at 101. When the doctor came in 15 minutes later, she had her checked again because she felt too warm. In that time, she had jumped back to 106.4. They don't know why. The fever went away as quickly as it came 2 days later.

Somehow, the urinary inconinence, right flank pain, and fever are all associated. But her urine comes back clean, they can't find any other signs of infection anywhere in her body, but some test that reads for inflammation comes back high. They don't know WHERE the inflammation is. She has been seen by endocrinology, gastroenterology, had x-rays... still no answers. She is scheduled for a sonogram in a few weeks. She has been referred to rheumotology, but there is only one in town, and she's not taking new patients. We are waiting to hear if we can take her to another city as we are more than willing to travel. We just want answers and a solution.

I feel guilty as all H-E-L-L for ever being angry or frustrated with her for the early incontinence she presented with in November. I have cried time and again when I remember the harsh words and the hurt they must have caused her when my frustation boiled over. I hate myself for ever thinking she was doing this on purpose or because she was just too scared/lazy/distracted to use the restroom.


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## EleGirl

I'm so sorry to hear this. What a terrible situation!

Why on earth do you have to wait weeks for a sonogram? She should have had that and scans done by now. There is obviously something very wrong going on insider her. 

How frustrating for you all that the docs (insurance, etc) does not just throw everything they can at her right now to find out what the problem is.


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## Blossom Leigh

With tears in my eyes since I have a son struggling with bedwetting all of a sudden at 5 years old. I pray yall find answers soon. I told my husband yesterday I wonder if this is medical... Will be watching this thread... Huge hugs!!


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## turnera

How horrible.

Any possibility of cancer? We see all kinds of weird symptoms because of it.


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## mablenc

I'm sorry to see your update, you should not feel bad. You have done the right thing. Have you considered a urologist? I'd push for a diagnosis, don't give up.


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## Catherine602

Has she been seen by a hematologist? The cyclic nature of her symptoms may indicate a drop in certain immune cells on a cyclic basis. Ask to see a hematologist ASAP. 

This is not medical advice just a suggestion.


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## Homemaker_Numero_Uno

I don't know what place you're in, but since her medical team can't find answers, please ask them to ask others, such as doctors at a reputable children's hospital, Boston, Mayo, St. Jude's etc. 

I wonder if it's allergies. My daughter and I as well as my eldest son all had similar responses to allergies. After we got our allergies under control these life-threatening fevers and the pain, the screwy white blood cell counts, etc. all disappeared. 

To give you a list of things good doctors thought my allergies were, we have:

leukemia/cancer
brain tumor
thyroid problem
pregnancy
psychotic anxiety
cardiac problem
problem with brain hormones/chemicals
problem with bowels
bladder infection/kidney infection
head trauma
Lyme disease
poisoning
drug abuse (street drugs)
chemical bronchopneumonia/lung trauma

With my daughter, they also investigated for child abuse. Her symptoms were mostly as you describe - high fever and stomach pain and incontinence, along with strange blood tests (white blood cells low I think), nausea, mostly extreme pain in stomach/back could not stand up or roll over in bed. Went on for years, getting worse and worse.

It ended up being simple allergies to birch pollen and dust mites.
I kid you not! We are healthy today. I have not had to rush my daughter to the hospital and have pediatric urology surgeon called in or high fever, iv etc. needed for years and hopefully never will again.

All that was a nightmare, like yours.

We take antihistamine daily. 

Anyhow, it could be anything.
Hopefully you have the rectal suppository Fever-all, you can insert this medicine rectally when a child has a high fever and you cannot get any fever reducing medicine into them orally. Can be a life-saver. You should also have this medicine that goes under the tongue that's an anti-emetic, will keep child from throwing up, this conserves fluid in their bodies, also can be a life-saver. 

I hope you find answers soon.

Any chance of getting to better medical care, can you self-refer to a Children' Hospital and take a road trip? I would be desperate.


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## MSP

Take her to a good naturopath. Doctors have their limits. I've been through similarly frustrating experiences that a naturopath helped with on the very first visit.


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## Homemaker_Numero_Uno

MSP said:


> Take her to a good naturopath. Doctors have their limits. I've been through similarly frustrating experiences that a naturopath helped with on the very first visit.


It should be an option, but not the only one.

I too went to a naturopath, and also my daughter was treated by an accupuncturist at Boston Children's. 

These pains and intermittent infections could also be caused by spinal nerve issues. As a child grows spinal nerves that are attached to fatty filum (a small sort of birth defect) can be stretched out. So a child who was normal, upon growing, can start to have symptoms, and intermittently at first, then progressively worse. One of my sons had this kind of issue, that could only be diagnosed by an MRI and only treated with spinal surgery to free the nerves. 

Other causes could be things like lead and mercury exposure, pituitary/adrenal tumors, etc.

Modern medicine is not really so bad as that, there are a lot of technologies that can be helpful, and to only see a naturopath would be imprudent.


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## MyHappyPlace

I'm guessing they haven't sent us to hemo or uro because her bloodwork and urine keep coming back clean. The delay in abdomen scan was a slip through the cracks. Apparently it was ordered back in late February, but I never received the referral in the mail. Early May the doctor kind of yelled at me for not taking her and I didn't even know it had been ordered yet. So I went to the front desk and got a copy of it. The date DID say Feb. 28th. So I called the radiologist from the exam room and they insist THEY never got a copy of it either. So a new referral had to be issued and as soon as it came through, we scheduled for the next available.

I hate this new system where everything has to be channeled through 10 people/approvals before anything can be done. They don't all see the records, they don't know how freaking urgent this is. The last place I called to set up an appointment said they couldn't see her until there was a diagnosis. Um HELLO, we are trying to see you to GET a diagnosis!! When I called the doc back, she had to put the reason as "underweight, failure to thrive" as that is the only definite we know. A radiologist doesn't know from that how extreme this situation is and the importance of rushing her in. So we wait. 

She goes back to her pediatrician 3 days after her sonogram. Unless the cycle starts again before that. One thing we did notice was that starting in the hospital in January, she was getting these lesions on her face. Just small little sores that would show up overnight. We were told it was just due to her compromised immune system. She has had multiples at all times and up to 8 a few weeks ago. But while she has one old one still healing on her forhead, she has not developed any new ones in almost 2 weeks... I'm afraid to get excited over this, but I can't help it. It's like a small little glimmer of hope that I have to clutch at.

I appreciate all of the responses and ideas. They are certainly points I will make with her doctor. One thing I do like about her pediatrician is that she will very patiently listen to everything I have to say and never rushes through our appointments. Her "medical mystery patient" as she calls our daughter gets her full, undivided attention, any time we are there or call. 

I will definitely be looking into the allergy factor. Especially since our older son was just put on daily antihistamines to treat chronic headaches...


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## Catherine602

It may also be an autoimmune disease. You said immune compromised, is that what they told you? 

Sounds like your daughter has an illness that may not be common and therefore her pediatrician may not recognize it. The symptoms are so distinct that the diagnosis should be made if someone knew the symptoms. 

Did they take a biopsy of one of the lesions? That would give an idea but only by a person in a speciality that can recognize it. Has she seen a pediatric dermatologist-rhumatologist? 

Some suggestions:

1. Can you get approval to go to a large medical center with a children's center of excellence? See link below. These are places where several specialties occupy one clinical area. It's easy for patents to go from one to the other. They go over the results with al the specialist in one room.

St Jude's or The Mayo Clinic or The Cleveland Clinic is the best in that regard. You can get test and see different specialist in a few days. Call them directly. The Mayo clinic is especially helpful. They are non profit and have several endowments. They see some pts gratis. 

2. Speak directly to your insurance provider if you need approval. Surprisingly, you can get somewhere depending upon which phone clerk you get. If you get a nice person on the phone they may go the extra mile. 

If the person you get on the phone does not seem helpful get off as soon as possible and call agin to get a different phone person. 

3. Google her symptoms and see if anything comes up. If you find any close, contact the physician that is listed. It may take some legwork to find the right Doc.

https://www.google.com/search?clien...cal+Centers+of+excellence+for+children&rls=en


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## Homemaker_Numero_Uno

OP, please consider ovarian torsion. 
Ovarian Torsion in a 5-Year Old: A Case Report and Review

I have read similar case reports in my work in medical risk management...typically I would see the cases that ended up in malpractice... usually this is because the clinicians did not consider the patients to be at risk. As this article mentions, the patient had been seen previously for abdominal pain and fever, and also states that 5 year olds are within a bimodal distribution for ovarian torsion.

Something you said - and mom always knows best - is that it seems to occur in a cycle, every 25 days or so. This would indicate that it has a hormonal component.

My guess is that nobody has checked for ovarian torsion. You should take her to walk-in clinic tomorrow and ask that she be evaluated for this, and if refused, ask for copies of all of her medical records - tell them that you are going to go to someone who cares, and if you are right, you will pursue the matter.

Your daughter deserves to have all REASONABLE causes of her as-yet UNDIAGNOSED condition that STILL EXISTS and has even caused her to have UNNECESSARY SURGERY for appendix removal, a surgery not without risk. And has also caused her a lot of pain as well as the risk of lasting NEUROLOGICAL/BRAIN DAMAGE (and life) due to high fever. 

Don't let this rest. Keep knocking on doors, you can even go back to the medical team that did the appendix surgery and ask them to evaluate if this could be the cause. Also, talk to the risk management department of the hospital, as well as the legal office and the patient affairs office. File a complaint, that your daughter received unnecessary surgery and then was discharged without a diagnosis or rule-out testing (i.e. ultrasound, etc.) 

Squeaky wheel gets the grease, and don't let anyone tell you that you are being over-reactive, or trying to second guess the doctors...it's like a production line in hospitals, that's why they need to have risk management and legal...because the doctors can and do make mistakes, and there are lot of holes in the system that gobble up innocent little girls. Be THAT mom, keep knocking on doors until you find someone who knows what to do. Ask for names and numbers and license numbers. Be unashamed. You are doing what you need to do as a mom.


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## Homemaker_Numero_Uno

Ovarian torsion is a rare problem within the pediatric population, yet it represents a true gynecological and surgical emergency [1, 2]. Ovarian torsion accounts for approximately 2.7% of all cases of acute abdominal pain in children [3, 4]. Adnexal torsion is often difficult to diagnoe given the presence of nonspecific symptoms and more commonly encountered diagnoses. The presentation of adnexal torsion can mimic appendicitis, urinary tract infection, renal colic, gastroenteritis, or other conditions of acute abdominal and pelvic pain [5].

...

Torsion occurs frequently (60%) on the right side presumably because the sigmoid colon leaves limited space for adnexal movement [4, 11, 12]. The predominance of right-sided abdominal pain confounds diagnosis, and 38% of children with identified adnexal masses in one study were initially diagnosed in the emergency department with appendicitis [5].


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## MyHappyPlace

HNO, they actually did check for this when they did the appendectomy. Once they got the camera in and found that her appendix was not the problem, they checked her ovaries and a few other organs to see if they could visually see something wrong. Nothing was found. They only took her appendix anyway since it isn't especially needed and that way any pain in the future, that would immediately be ruled out!


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## Homemaker_Numero_Uno

MyHappyPlace said:


> HNO, they actually did check for this when they did the appendectomy. Once they got the camera in and found that her appendix was not the problem, they checked her ovaries and a few other organs to see if they could visually see something wrong. Nothing was found. They only took her appendix anyway since it isn't especially needed and that way any pain in the future, that would immediately be ruled out!


So glad to hear from you and that they looked at this and poked around a bit. That's a big relief. 

So maybe consider allergies. They can be very, very strange in terms of symptoms. And could also be cyclical because the female body's immune system is sensitive to hormones. Does she eat hot lunch at school and the school has some kind of rotating menu? You just never know! One way I could sort of tell with my daughter (and myself) is that liquid Benadryl stopped the abdominal pain fairly quickly (we are talking pain I had to do Lamaze for) when it was allergies.

I hope she does not have another episode, maybe it will remain a mystery forever, and be water under the bridge. 

But make sure you have the sublingual anti-emetic (Zofran) and the Fever-all suppositories. Sorry to hear about your ice cold shower/s. You are a wonderful Mom. Your daughter is so lucky to have you, and don't feel bad about not believing her at the outset. Just apologize and move on and promise her what you already know, if it happens again you will do everything you can to find out what's causing it and to have it fixed. She knows you are on her side and that she can trust you.


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## kag123

I am following this. I am not a doctor. 

Your description sounds like whatever she has there are distinct episodes or flares associated with it. I.e., there are breaks in between where she is relatively normal. 

Have you been seen for any autoimmune disorders? This can be a hallmark of them. 

Lupus? The sores/rash is what made me think of it. And fever. Progressive kidney disease is part of it. 

Can you take her to see a rhuematologist or endocrinologist?

Can you take her to a pediatric hospital ER next time she is having an episode?


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## MyHappyPlace

kag123 said:


> I am following this. I am not a doctor.
> 
> Your description sounds like whatever she has there are distinct episodes or flares associated with it. I.e., there are breaks in between where she is relatively normal.
> 
> Have you been seen for any autoimmune disorders? This can be a hallmark of them.
> 
> Lupus? The sores/rash is what made me think of it. And fever. Progressive kidney disease is part of it.
> 
> Can you take her to see a rhuematologist or endocrinologist?
> 
> Can you take her to a pediatric hospital ER next time she is having an episode?


She has seen an endo and we are waiting for a rhuematologist. The problem there being we have been issued a referral, but the only pediatric rheum in town is not accepting patients. So we are waiting to hear from insurance if we can travel to another town or even state to find someone that WILL see her.

She has been to a peds hospital twice. All they do for her is wait the symptoms out and then discharge her when her fever breaks. No answers given, just more fear as they always give her an IV "to keep her hydrated". Well, she doesn't have a problem drinking fluids or eating popsicles so she stays plenty hydrated at home too.

The problem with the sores is that it is ONLY on her face and everybody keeps saying they don't have a rash appearance. There is one isolated sore on her forhead, or her cheek, chin, whatever... they don't cluster at all and except for the one time she had 8 of them, she's never had more than 3 at a time and they heal really quickly. 

Though I looked up lupus and she dose present with 1 or 2 close symptoms, they aren't quite right. Like lupus lists low grade fever, the ones we see are anything but "low grade". But I'm not a doctor, what the hell do I know? It is just another thing I will add to the list to ask her doc about.

I really do appreciate all of the support and advice/thoughts given here. The more I have to ask her doctor about, the more we can either rule out or put in the "possible" section.


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## Blueapple

Hi,
Also not a doctor but having children myself I can help stressing for you and you daughter.

This may be a long shot - but could she have been exposed to any chemicals - do you live in a rural area where pesticide/fungicide could be sprayed on crops on a regular basis or a sports field or lawn area? Do you use ground water for drinking or had house sprayed for pests or fungus etc. Does she eat allot of mushrooms (they can accumulate toxins and some growers are lax).

Children can be more sensitive to pesticides due to their size and are often outdoors more and get more exposure.

Hope you get some answers to your daughters illness soon.


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## EnjoliWoman

The children centers are a good idea - is there a teaching hospital nearby? Sometimes those are excellent resources for these difficult cases.


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## turnera

We lived near a SuperFund site (before it was discovered to be one). Our friends' son died from exposure and their next child had medical/mental issues from it.


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## Catherine602

Can you check out pediatric centers of excellence near your home state or The Cleveland or Mayo Clinic? Ask your insurance. You can usually get an appt quickly.


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## Blueapple

Any updates OP? I realize you are probably busy with medical appointments etc but just want to know if your girl has had any improvements.


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## MyHappyPlace

I have been looking up her symptoms since this started and never really found anything. We took her back to the doc last week because she started with the incontinence again and that always starts just before the fever. Doc couldn't find anything wrong (big surprise there!) and sent us home. Fever hit a few days later. Differences this time were that the incontinence did not last the duration of the fever, she didn't get any sores, and though she had a few boughts of abdominal pain, they were not as severe or frequent as usual. Also, she started complaining of pain in her knee. At the time, I thought it was unrelated. Then I changed the wording of my search, and BINGO!

I found a disorder that fit her scenario. It even stated that a large percentage of people undergo unnecessary appendectomies with no result. From the symptoms, to the duration of both the episodes and the time between attacks, every piece fit. Except, it is incredibly rare and didn't make sense to us. It's called Familial Mediterranean Fever and is an inherited genetic mutation found in only one in every 200 to 1000 people of Mediterranean descent. Of which, I am not. While her father is Italian, I am German/Irish/French and this mutation has to be carried by both parents.

Furthermore, there is no conclusive test to exclude FMF, including genetic testing. It is only diagnosed by a history of the symptoms and then seeing if the medication is effective. She did a bit of research and called back to say she had called in a prescription to see what happens. 

So that is where we are. She has only taken 3 doses so far but we are hopeful and skeptical at the same time. While everything fits so well, we can't believe that a disorder so rare and virtually unheard of in our ethnic background, could possibly find it's way to our sweet baby girl.


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## imtamnew

A special prayer and a thank god for having identified the illness.
As a father to young kids I was silently following your thread.

She will be fine. Ameen.
_Posted via Mobile Device_


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## mablenc

Well at least your getting somewhere, about genetics, you would be suprised of how many things you think you know about you family tree that are way off. We traced ours recently and ended up with different countries that are wayyyyy of our family history. 

I hope the treatments work, we are going through something similar with our son. Also a very rare condition, there not much on the Internet in regards to patients,let alone parents dealing with it.

I'm glad to read your update.


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## Homemaker_Numero_Uno

MyHappyPlace said:


> So that is where we are. She has only taken 3 doses so far but we are hopeful and skeptical at the same time. While everything fits so well, we can't believe that a disorder so rare and virtually unheard of in our ethnic background, could possibly find it's way to our sweet baby girl.


Sometimes treating according to the symptoms and not the testing is the only way to go. I had two different teams of world class doctors throw up their hands and offer me a med based only on symptoms. If it works, it works, you can figure out why later.

The body changes its defense mechanisms based on its past experience. The immune system is a beautiful and complex thing of its own. 

Be sure to give her a multi-vitamin! As I learned recently the body requires all sorts of trace minerals to work correctly. I was deficient in one mineral and we thought it might be cancer/leukemia for the effect it had on my bone marrow function. :-o Nature loves a balance, and it is so difficult to get a balance eating from today's grocery store, even if health conscious. 

You are an awesome mom.


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## MyHappyPlace

So, it's been a LONG time now. Our daughter has been fever free for just over 3 months. It's incredible! She started her meds in the middle of her last fever and once it cleared up, it stayed gone. She still experiences a little bit of pain occassionally, but nothing like before. Also, abdominal pain was a symptom and is also a side effect of the meds so we never know what is causing it. We did notice that giving her her pill in the evening seems to result in fewer complaints so she takes it right before bed. She finally met with a rheumatologist but as she was already showing an improvement, there wasn't much new they could tell us. She goes back later this month for a follow up. The only problem being it's 2 hours away and turns into an entire day event. 

She has also started looking healthier. From not growing for years, she shot up 1/2" and gained almost 4 lbs in the past 3 months. This is monumental for us! Her skin has gone from being extremely pale and paper thin, being able to see every vein, to a natural tone. She just looks less fragile now!

We pulled her from school in April and started home schooling late July. She is technically still enrolled in a public school, but it's a "Virtual Academy" so they send me all of her books, computer, etc. and I do the teachings myself with support online if needed. She's really excelling and pulling far ahead of her peers as she gets to work at her own pace.

I want to thank everyone for their advice, well wishes, and support while we struggled through this. We may never really know the answer since we cannot get the genetic testing done, and even if we did, there is a horrendously high percentage of false negatives and we would always question it. But whatever it is/was, it seems to be over.


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## turnera

OMG, I'm so glad! I'm so happy for you guys. And thanks for letting us know.


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## mablenc

Glad she is doing much better, I realize it's almost been a year since your first post. I'm sure seeing her healthier made all the effort worth it.
_Posted via Mobile Device_


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