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letter to the viewers from barbara day

Dear Viewer:

I feel "Medicating Kids" is a valiant attempt to explore an extremely broad and controversial topic. But it has also been a mixed blessing for my family--a strange blend of pride and anxiety which has led to an extreme appreciation concerning the courage of my son to be part of this documentary The producers were faced with the difficult decision of what to leave in and what to leave out. In the end, they decided to focus on the personal stories of four families, including my own. Over 300 hours of video would eventually be edited down to the 56 minutes allowed in the final program.

AD/HD is a difficult diagnosis. Our struggles and anguish are made worse by various self interest groups. Irresponsible headlines such as "Ritalin Wires Millions" or " Cocaine for Breakfast, the new Family Staple" mock families and individuals who live with AD/HD. At the same time, there are other groups pressuring parents to put their children on medications without providing information about other interventions.

Our children are different. Yet, they often are forced into a "one size fits all" system of public education that does not meet their needs. The same "one size fits all" mentality has worked its way into the medical profession. Rather than viewing our children as unique individuals, I fear these systems often view them as pathologies and treat them accordingly. Our children's special gifts and talents get buried by psycho-educational labels and their true potential sadly remains undiscovered. This is the real tragedy of AD/HD.

As the parent of an AD/HD child, and as an adult who has ADD, I would encourage parents, teachers and health professionals to look beyond the stereotypes of lazy kids and bad parents. Empathy and understanding are needed as we continue to define AD/HD and discover its solutions.

Barb Day

Why so Many Medicines-Why all the Changes?

Robin's Medication Chronology

Robin was diagnosed in 4th grade, age 10 with ADD. Date was December 1994.

Ritalin December 1994 from pediatrician--initial treatment for ADD.

Ritalin SR June 1995. Robin seemed to be a bit moody and medications were changed to Ritalin SR hoping that there would be less rebound. Teacher response was very positive and teacher showed us how much improved Robin's IOWA tests were this year as compared to 3rd grade. The improvement was a significant amount not normally seen in year - to year differences.

Over that summer Robin didn't want to take medicines anymore so we went to the pediatrician to discuss this. He said he didn't like medicine because he didn't feel silly anymore. He suggested that Robin try Pemoline (Cylert) because it was longer acting and perhaps Robin would only have to take it once in the morning. Robin had to have blood drawn to take this medicine and it was upsetting to Robin. Robin started on this in early August 1995 to get ready for 5th grade. After school was in session for one month Robin said he didn't want to take medicine again so we talked to the pediatrician. We all agreed that Robin would stop all medicine until the winter break and we would look at it again. Robin was now 11 years old (his birthday is in July).

In December Robin received his report card and didn't show it to us for three days-I knew he had it but wanted him to show it to us when he was ready. Without the ADD medicines his grades and conduct got worse-Ds and Fs. Lots of negative comments from 5th grade teacher and plus teacher characterized Robin as someone who "dances to the beat of a different drummer". At this point Robin even said he needed to go back on his Cylert medicine because of the bad grades and the trouble he was getting into. The teacher kept a book of "strike outs"-Robin had many including 3 strikes all in one day. This teacher later gave Robin the "Pack Rat" Award-for the messiest desk of the whole class. Other students got nice awards like "Hardest Worker", and "Most Improved". Robin's award was true-but so completely negative. Robin was 11 years old. After winter break Robin started back on Cylert but teacher and parent questionnaires showed that Robin was moody. So I asked the school for the name of a psychiatrist.

The psychiatrist felt Robin probably had ADHD, Depression and Oppositional Defiance and suggested trying Wellbutrin instead of the Cylert. Wellbutrin was supposed to help focus for school but is an anti-depressant. Robin was 11.

Robin did not improve in school and actually seemed a bit more anti-parent and anti-school. He hated doing homework. Meanwhile the school was refusing to help Robin by offering special education services-they said he was just lazy.

We had Robin evaluated for learning disabilities by a private child psychologist in December 1995-in 5th grade. 3 visits for testing. Robin was off his medicine and struggling very hard in school-grades were Ds and Fs. The child psychologist recommended that Robin go back on stimulant medications and that the schools consider special education status for Robin's math and writing struggles. He sent his results to the school in early January 1996-the middle of 5th grade. The school did not start testing Robin until April but by then the Wellbutrin was making Robin sick and on April 15 I found Robin crying on the floor of his closet, refusing to go to school. I was very scared-I knew that Wellbutrin was not OK'd officially for people under age 18 and I was worried. I called the psychiatrist so that Robin could be admitted and evaluated in Children's Hospital for medication side effects. He was admitted for only 2 days but the hospital suggested Robin go to their special education hospital class for 2 weeks so that he could be evaluated for learning disabilities the school may have missed. I agreed. I drove Robin back and forth to the hospital classroom for 2 weeks. The hospital gave the school some recommendations for smaller class size and more testing. There was no follow-through from the school.

Robin's diagnosis and medications were altered again. The hospital felt that Robin may have a primary diagnosis of Depression and possibly not ADHD at all. (They never saw Robin off his ADD medicines so I thought this might be backward) I wanted the hospital to evaluate Robin so I went along with this. He had a very good and understanding psychiatrist at the hospital.

She thought that perhaps Robin should switch to Dexedrine and also try Zoloft. Dexedrine was suggested because this was the medicine that I took for my ADD and the Dr. felt Robin's system might be more like mine-maybe Dexedrine would work best. Robin stayed on these two medicines all summer and into the beginning of 6th grade. This seemed to be a good combination-Robin was not fighting it and his mood was much better. These were the good days.

Grade 6 - Age 12. The medicine seemed to work very well but on some days Robin's school performance and behavior would be really bad-then be better the next group of days. He was very defiant in those months. We called the psychiatrist.

Robin's psychiatrist thought that perhaps Robin's bad moods might be due to mood swings-maybe not Bipolar-but sometimes Bipolar medicines helped mood swings even if you were not bipolar he explained to me. He suggested Robin be put on Depakote and later added Clonidine. Robin needed more blood drawn to monitor liver function and an EKG before he was started on the Clonidine. Robin was 12. After a couple months there was no change and the Depakote was stopped. All along Robin remained on the Dexedrine and at one point the Dr. increased the Dexedrine dose also-but no change so on October 16, 1996 the Dr. decreased the Dexedrine dose back down to 10 mg instead of 15 mg.

Months later I would find out that the school had not been giving Robin his medication everyday and that was why his school performance and behavior worsened. The school denied this and would not let me see the medication log. The school told me the medication logs were purged at the end of each year. After paying an attorney $1500 the school finally produced the medication logs months later- Robin's bad days and suspension from school coincided exactly with the days he did not get his medication at school. I requested that the Colorado Board of Nursing and The Office of Special Education in Washington investigate this matter concerning the missed medications: 1. The Board of Nursing declared my son's case had no merit but would not discuss the reasons for this decision. 2. The Office of Special Education in Washington has failed to investigate my son's case for 2 years despite repeated requests from Colorado State Senator Ben Nighthorse Campbell and myself. (Normal time limit is one year)

AGE 13.The following summer Robin stayed on the Dexedrine but the Zoloft was dropped. It seems when Robin is not in school his moodiness would go away. At this point the psychiatrist theorized that Robin's Depression and Oppositional Defiance were school related only.

7th Grade Private School and Home schooled-I did not want Robin to return to a school that could not administer his physician - ordered medication. Tried alternative medicines, amino acids, herb supplements, magnets, essential oils. None of these worked like the Dexedrine had worked.

The private school meant driving 140 miles each day and since I had to quit my job to be my son's school transportation I quickly ran out of money and could no longer afford the private school. Robin would need to return to public middle school.

8th Grade Diagnosis: ADHD with Unmet Educational Needs: Robin was switched to Adderall for the first time-it had just come out and the pediatrician suggested we try it. We had stopped seeing the psychiatrist because he felt Robin's problems were school-related-NOT emotionally based or mentally illness. We started to discuss private schools because Robin had a terrible 8th grade year (year of Columbine-and Robin got all Ds and Fs-special education was very limited and not individualized) Robin almost failed 8th grade and was told he must go to summer school or he would be retained. He took Algebra in summer school at parent expense even though Robin had an IEP, which mandates FAPE (Free and Appropriate Education)

By the end of 8th grade Robin was very anti-school and anti-medicine-he stopped taking medicine completely that summer. He heard about a new private high school and asked to go there instead of the local public high school.

Private High School

9th grade-still pretty anti-school-no medications. Tutor Jeffrey Freed helped Robin and encouraged him to try to "hang in there". Jeff was the major factor in keeping Robin in school. He discovered that Robin had a very gifted visual memory and would benefit from visual learning instruction. Robin's grades began to improve and Robin decided to continue at the private school.

10th Grade We planned to have Robin start on Concerta. The new medicine that would mean only one pill a day. The teachers saw a big improvement in his attitude and also saw some improvement in the work he was turning in. One day in October we got a report that Robin was fighting in school and that he had been rude to his classmates all that week. I found out that Robin had stopped taking medicines and when confronted about this he said he hadn't been swallowing his medicine all year since we first got him the new Concerta.

He continues to be off his medicine now and I hear from the teachers that he is still so much more improved this year over last year-except for math areas. There are some difficulties with increased talking and late work without the medication but overall the teachers enjoy having Robin in their school very much. They say "Robin is such a great kid".

I am left to wonder if we had found this wonderful school years ago would Robin have ever been diagnosed ADHD, Depressed, ODD and put on all those medications?

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