Discussions By Condition: I cannot get a diagnosis.

12 yr old daughter with multiple symptoms...can't get answers

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: desparatemom
  • January 14, 2012
  • 04:57 AM

My 12 yr old daughter has had various symptoms that have been dismissed by doctors in the past or baffle her current doctors and therapist. She had problems with aggression at a young age, was placed in an EBD unit in kindergarten and diagnosed with ODD. Later realized she was dyslexic then diagnosed with ADHD, OCD and mood disorder(non specified). Her first therapist, in Head Start, mentioned Asperger's Syndrome but the psychiatrist dismissed that because she was too outgoing and friendly, she hugged everyone. We tried Strattera which made her more aggessive. Then I went to her pediatrician with concerns about her weight, was told to restrict her food and make her exercise more. I did this...she gained weight. Doctor still dismissed this, acted as if I were lying about her diet. Meanwhile, psychiatrist put her on Vyvanse for ADHD ( an amphetamine)...she gained weight. It did nothing for her ADHD symptoms but OCD symptoms, ie. skin picking, got worse. Put her on Zoloft...still skin picking..gave her hemorhoids from the constant constapation and stomch problems. Had to put her on Nexium and Miralax. I have taken her off all medications now for over 6 months. Her current doctor, I changed, checked her thyroid, levels are normal, and sent her to a clinic specializing in people with high BMI. Still no answers. Her symptoms are unexplained weight gain, truncal obesity, pins and needles in calves, low body temp, excessive sweating, strong body odor, has forgotten things learned ie. riding a bike, tying shoe laces, dyslexia, extremely literal thinking, she does not lie, abnormal interest in one area, poor social skills, cannot distinguish social clues or rules without repeated instruction......there are others just too many unusual things. Anyone have any suggestions?

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  • You may want to take her to a Geneticist for testing to get an accurate diagnosis of her medical condition. As a special ed director, I have witnessed young out-going children with autism/Asperger's, too, but I don't think this is one. Not only was your information years ago inaccurate, it could have actually violated IDEA, Federal special education rules and regulations. When a parent asks/requests a test, the team should agree to do the testing. But what I see now, I would (if you need a lable for school) classify her under the category of "Other Health Impairment"..that is where she should be now. You could take her to a Preventive Medical doctor and see if he can manage her course of treatment with a more natural type of approach to her treatment. It also seems that the school team may need training on how to manager her little odd behaviors, so instead of sedating her, all the people who come into contact with her at school (lunch people, bus drivers, teachers, etc) need specialized skill training in behavior modification techniques, basically--. Join a parent support group for special ed; they will have very helpful tips for you and try to get a break once in a while. Make sure they put social skills goals and staff training into the body of the IEP..Since you saw this in preschool, I would look to genetics.Good luck and make lots of friends at your new support group..
    Monsterlove 2921 Replies
    • January 21, 2012
    • 06:28 AM
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  • I have a friend with a daughter similar. Her diagnosis is Prader-willi syndrome. Here is breif overview. Good Luck!Prader-Willi syndrome (PWS) is the most common known genetic cause of life-threatening obesity in children. Although the cause is complex it results from an abnormality on the 15th chromosome. It occurs in males and females equally and in all races. Prevalence estimates have ranged from 1:8,000 to 1:25,000 with the most likely figure being 1:15,000. PWS typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Average IQ is 70, but even those with normal IQs almost all have learning issues. Social and motor deficits also exist. At birth the infant typically has low birth weight for gestation, hypotonia (weak muscles), and difficulty sucking due to the hypotonia which can lead to a diagnosis of failure to thrive. The second stage (“thriving too well”), has a typical onset between the ages of two and five, but can be later. The hyperphagia (extreme unsatisfied drive to consume food) lasts throughout the lifetime. Children with PWS have sweet and loving personalities, but this phase is also characterized by increased appetite, weight control issues, and motor development delays along with some behavior problems and unique medical issues.
    annzhanz 1 Replies
    • January 24, 2012
    • 10:03 PM
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  • I made an account just to reply to this forum. She sounds EXACTLY like a person with Cushing's syndrome. It is very commonly misdiagnosed. It it caused by high levels of Cortisol. It would cause her to gain weight regardless of her diet. It also causes behavior problems similar to what you are mentioning. She is a textbook case of this rare disorder. On "House" there was a patient that reminds me so much of your daughter. It is season one episode 16 and entitled "heavy". I am looking for the link to an online version of this episode. http://www.tvduck.com/House.html or http://www.sidereel.com/House You may need to download flash-player or real player. it is also worth looking into celiac disease. Most doctor think that you need to be thin to to have it, but in fact many patients (including myself) are overweight. Even if she tests negative, it is worth researching the gluten-free diet. It may help her both physically and mentally. Just be sure not to start the diet until after she gets tested for celiac, as a gluten free diet will give her a false negative result. Please keep me updated on your daughter. Best of luck.ps. I have aspergers syndrome, and am extremely outgoing
    theglutengirl 1 Replies
    • January 30, 2012
    • 05:42 PM
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