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Here's What's New! Updated October 7, 2001 |
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Here's What's New! Updated October 7, 2001 |
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This page was started in late October, 1998.
The events described below are kept in chronological order for ease of understanding. We apologise for the length of this page, but are keeping it this way for everyone to read about the changes as they happened.
In the last few months a lot has happened. Troy has changed schools, medications, respite workers, and a new worker at the Boys and Girls Club.
A few months back, the school Troy was attending seemed great until one day the school principal took it upon himself to yell at Troy for something he'd done. I'm not condoning the actions of Troy, but the principal is ignorant of Troy's condition, and chose not to know of it. Troy, due to his ADHD and autism was scared and cried. This you do not do to challenged children of any sort. They do not respond well as seen from Troy.
I immediately removed Troy from that school, and placed him in another. After speaking with the principal at this school, I felt comfortable and I know Troy will be treated with respect and pride, no matter how angry he may get.
The medication my son was taking for two months was Dexedrine. It didn't work for him. and had the opposite effect. Instead of helping him control his anger, it made him angrier. Troy was withdrawn, out of control, and his face and eyes were so lifeless. The doctor saw him, and took him off the Dexedrine immediately. "This is not what we want to see, we'll try something else, but first lets get this drug out of his system." Two weeks later, we went back to see the doctor, and now Troy takes Ritalin at 10 milligrams per day. It's a waiting game to see how this will affect Troy.
Troy changed respite workers, and also his worker at the Boys and Girls Club because sometimes he's hard to handle, and they say "No more" and he's shuffled off to the next person. The workers Troy has now are great. They understand and can deal with him. Maybe all this is for the best. Troy's stepdad and myself feel much more secure and relieved now, and it's been a long time coming.
November 30, 1998.
As of last Tuesday, because of Troy's new medication, he was expelled from school. The medication is called Time Release Ritalin.
The trouble started early in the morning, and I was called to the school to take him out at 11:00 am, before the medication had time to take effect. He will be out of school at least until Thursday or Friday, December 2 or 3. We have a meeting at the school Thursday to determine if Troy can return or not, and under which conditions. He may only be able to go half days, or be expelled for good, which means he cannot attend any school in this district.
The concerns at this time are; If Troy cannot return to school, how is he going to get a proper education? In home teaching is one possible option, however this does not provide for interaction with his peer group, other teachers, and he cannot go to school with his sister.
We are hoping Troy will be able to return to school. His doctor, independant resource worker, parents, school principal, school board director, school psychologist, and his private resource teacher will all be attending this meeting. We will be updating this page as soon as the results are known. Please wish us luck!
December 5, 1998.
We attended the meeting at the school on Thursday. All the head personelle were there. First to be discussed was Troy's medication, and the effects it had on him. At home he was usually calm, and the same at the Boys and Girls Club, yet at school he was still getting angry and aggressive. No one seems to know why, not even his doctors. For now he will be staying out of regular school until February 1, 1999.
The second discussion was about getting Troy a new teaching assistant for home, so he doesn't fall behind in school. Troy will be remaining at home for about 1 hour in the morning, and then going to an Outreach School for 2 hours. He then comes home for lunch, and in the afternoons, goes out again to a recreation program where he can go bowling, swimming and such. Mondays, Wednesdays, and Fridays he goes to the Boys and Girls Club around 3:00 pm, until about 5:00.
At the end of January 1999, there will be an evaluation of Troy's Progress with the teacher's aid outside of regular school. If things go well with his medication and anger management, Troy wil return to school starting with short periods of about 1 hour per day, and working up. If things don't go well, the original program will still be in effect, and Troy will continue to get out of school education at outreach schools, and at home.
We pray that Troy will get better, and be able to continue in regular school as soon as possible, for we love him with all our hearts and souls, and will never give up.
December 13, 1998
Last Thursday we went back to see the doctor and changed Troy's medication again. He was having trouble swallowing the time release Ritalin, and diagnosed with anxiety.
The new medication is called Zoloft, and it's a type of anti-depressant. He is on this medication now so he doesn't feel so dependant on me, and to give me breathing room. Being with him 24 hours a day is stressful, and this medication is administered once a day for seven days, and seems to work within 10 minutes.
When Troy was on the other medications, I couldn't go anywhere without him. He was constantly "tied to my apron strings", and followed me into and out of every room in our home. I never got anything accomplished with Troy constantly under foot.
Now I have more time to myself, and to get things done. I can actually go to the store without Troy, and when I return he is no longer depressed, crying, or just sitting around waiting for me to come home. He is happier, and manages to keep himself busy until I return.
Now that Troy is off the Ritalin, his hyperactivity has returned, however that part of Troy's behaviour I can deal with. The doctor feels that once Troy's anxiety subsides somewhat, he may not have to go back on Ritalin, and the Zoloft may even help control his hyperactivity.
January 27, 1999
As of January 4, Troy has a new male teachers assistant, which I've been asking for since I moved here in 1994. Things seem to be working out well, and Troy has fewer problems getting his work done even though it's only for 2 hours per day right now. According to his new T/A, Troy should be returning to regular school in February, even if it's only for a few hours per day. I'll know this Friday (Jan 29) exactly what the school expects from Troy and myself for him to return.
Troy will be starting *another* new medication again on Friday. It's called Clonidine, and he will be taking 0.025mg twice a day plus 50mg of Zoloft and 1mg of Risperdone a day. I hope this is the last time I have to change medications for my son, because I feel so guilty putting all these drugs into his body. I know I'm doing the right thing for the sake of my child and his safety.
There are two other drugs that I inquired about. Taxamine, and Adderol. Both are unavailable in Canada, otherwise I may have tried these first. The medical reports say good things about both. I have emailed Health Canada numerous times, and so far have received no response. This really peeves me off! It seems like Health Canada doesn't give a damn about our children. These medications have been approved in the US for quite a few years.
Please, if you live in Canada, or you just care about children's health, go to Health Canada's Website or email the Minister of Health, and help us to help our children by getting these drugs tested and possibly approved for use in Canada. Adderol and Taxamine are especially needed because they have fewer side effects, and do not have some of the poisons contained in such drugs as Ritalin, Dexedrine, and Zoloft.
January 30, 1999
We tried the Clonidine. What a disaster. In the morning Troy seemed lethargic, and had troubles concentrating. By 11:30 am, he was passing out on the couch. The doctor recommended I take him to the hospital immediately. There was nothing wrong, however it took 48 hours for the Clonidine to get out of his system, and during that time Troy slept a lot. The only medications Troy will be on are Risperdal, and Zoloft. They don't control his hyperactivity, however it helps calm his anxiety, which seems to be great for his teachers.
The meeting with the school went well. Troy will be returning to school Monday, February 1st. It will only be for a couple of hours per day at first, and hopefully working up to full time by spring break.
I also had a telephone conversation with Senator Pat Carney. She has promised to look into the issue about Adderall and Taxamine, and if these drugs will ever be available in Canada.
March 10, 1999
I contacted Cindy Hawkins, MLA for this district, about the Adderall. Within 3 days she phoned me back to let me know about Adderall. I am allowed to bring it back into Canada from the US, providing I have a Doctor's prescription, and documentation on the illness of the person.
Meanwhile, Troy is back on the Clonidine, taking only 2cc in liquid form twice a day. This amounts to 1/4 of a pill, with one pill measuring .025mg, the previous dosage Troy was taking. Troy seems to do OK at school, however by the time he get's home he's a Mexican jumping bean again.
Troy has been on the Clonidine since last Friday, and since the dosage seems to be having minimal effect, I've contacted Troy's Doctor (Don Duncan) to increase the dosage. Dr. Duncan will be letting me know tomorrow.
Since Troy has been seeing Dr. Duncan for almost a year, he is a very empathetic doctor. He listens to what Troy and I have to say, and lets us take an active roll in deciding medications, office visits, and other possible treatments for Troy. When it comes to doctors, I trust Dr. Duncan with my son's life, as well as my own.
For those parents who have challenged children it is your choice of what you feel is right for your children. Often doctors are wrong, and believe me, I know this from experience. If there's something you don't know about a medication, please email me because I've studied this for the past 11 years, and researched the possible medications available for treatment of ADHD, and I promise, if I can help you, I will.
April 1, 1999
Troy's Clonidine dosage has been increased to 4ml, twice per day, four hours between dosages. It has helped immensely in school, and at home. Troy can now stay in school from 9:00 am until 1:00 pm. Reports from school say that Troy is doing very well. Once Easter break is over, Troy will be going to school until 2:00pm! In spite of the medications, safety rules are still an issue. In all, he has changed for the better, and we have continued high hopes for him come September when he will be starting in a new school.
Happy Easter Holidays to everyone!
April 9, 1999
Troy is doing very well in school now. Next week he will be attending school from 9:00 am until 2:00 pm. Troy has been successful in all his school activities, with no signs of mental, emotional, or physical failure, since he has been taking the Clonodine. Troy has shown everyone how successful he has become. Never to be a failure. We are extremely pleased with his progress, and we love him very much!
April 25, 1999
As of Monday, April 26, Troy will be attending school from 9:00 am until 3:00 pm, regular school hours!
Starting next September, Troy will be attending a different school. His Teacher's assistant is taking him over to the new school a few times to familiarize Troy with the surroundings. Because of Troy's Autism, he doesn't like changes in his life. This is one way of getting him comfortable with the school and the teachers. The new school seems great because they are looking forward to having Troy there, and he will be able to continue his Individual Education Plan with his current Teacher's assistant.
After talking and corresponding with other parents of ADHD and autistic children, I have to say "I love Canada" for the opportunities and support we receive from the school system and other agencies.
May 7, 1999
I finally had a friend scan some pictures for me. Here's our Christmas picture 1998. (Sorry, we lost the link. Pic will be back up ASAP)
May 11, 1999
I'm happy to say that Troy no longer is taking Zoloft. His doctor want's to keep his medication to a minimum, so now he's only taking Clonidine. My biggest fear was that Troy's anxiety would start up again at school, but he' been doing superbly. Troy is changing schools at the end of this year, and because of his autism, his teacher's aide has taken him over to his new school three times. This lets him get used to the size and layout, so there's no suprises when he starts there in September. He seems to like the new school, and says it's a bit scary compared to the one he's in now. Troy will still have the same teacher's aide (big bonus!) so not everything will be totally new.
Troy's doctor appointments used to be once a month, and if everything goes well, he will only have to go once every three months. The clonidine for my son works well when everything else we tried was a disaster. He's still fairly hyper and obsessive, but I seem to be able to handle that. It's much better than having to handle his violent behoviours he had in the past.
Troy is still not going to school until 3:00 yet, but he will be doing a lot more in the regular classrom starting Monday. Hopefully we can get him into full days soon.
June 15, 1999
About two weeks ago someone "signed" my guestbook. Going by the name of "Mr. Discipline", he (she?) left some nasty comments stating his opinion on treatment of ADHD and Autism. He mentioned spanking and slapping as effective treatments for bad behaviour. His whole premise was that there is no such thing as ADHD or Autism, and it was simply poor parental guidance that caused a child to be "bad". I'm glad this person saw fit to express his opinion, and am equally glad that this person is not looking after my children, and sincerely hope he has none of his own. It was also very nice of him to leave his website and email address (NOT!!!) for us to reply.
I'm proud to say that Troy has done very well at school lately. He's been going for full days since the beginning of June, with no problems at all. He will be graduating grade 6, and changing schools in September, and the school has prepared a graduation ceremony and dinner for the students leaving this June.
When school gets out, Troy will be taken off his Clonidine completely, and hopefully we will have a successful and happy summer with no medications. More on this as the summer progresses. His summer activities are somewhat scheduled. He will be going to the B&G Club 3 days a week, and at home we have the pool in our back yard which he loves to swim and play in with Shyann. He also enjoys baseball and soccer, and going to the park. We will also be going to the beach so he and Shyann can play in the Waterpark.
July 5, 1999
I am proud to say that Troy has graduated into grade 7. In the small awards ceremony, Troy was recognized as "The most improved student" in his class. He got a certificate of completion to take home and we'll frame it and hang it for him. The awards ceremony included a dinner for parents and graduating students, and we were proud to be there.
Troy is now only taking 4ml of Clonidine once per day. He will be off of it completely by the end of July. He still shows many signs of autism. He seems to be growing out of his ADHD. Even though he is going to be off the Clonidine, there are many autistic traits we still have to deal with. He is becomming very possessive and doesn't like anyone touching his things, especially his toys. He is still eating well, but must have his favourite knife, fork, and spoon at every meal.
Earlier today we were all outside, and Troy and Shyann were in the swimming pool. The neighbour kids came over to go swimming, and Troy immediately got out of the pool, got changed, and started pouting and whining. As soon as they left, he changed, and jumped right back in the pool and played for another hour alone. The change in "environment", having new, strange kids in his back yard, was too much to handle for him. It was too overwhelming to have that much change all at once. He was not forewarned of their arrival, and retreated to mom for comfort. Fortunately, this was a minor disruption, and he dealt with it by playing with Shyann, going for a little walk, and playing with his trucks until they were gone.
We go back to see Doctor Duncan on August 11th to see how Troy is doing, but my concern is finding something to help with his autism. It seems the more his ADHD fades (he's still very hyper), the more his autism and autistic behaviours come to the forefront. It's just as much work for me dealing with his autism as it was dealing with his ADHD. In some ways the autism is more difficult to deal with. Everything must be "just perfect" at all times, none of his belongings can be out of place or he whines constantly until he gets his own way, sometimes for hours on end.
July 19, 1999
Troy has been off the Clonidine for about a week now. It took about 3 or 4 days for it to completely flush out of his system. We wanted to see how he would be without it. If all goes well, he can start school next September with no medication. Troy's routines remain about the same, and he is still eating and sleeping well. He is also still doing wonderful at the Boys' and Girls' Club. Troy's supervisor at the Club say's "You would never know he is off his medication, he is doing so well".
Troy is now going to Respite twice a month. For awhile it was only 1 weekend per month. One family he stays with is very young, active, outdoor types, and the other family is quite a bit older, but they too are active, outdoors types. Troy gets to go fishing, ride the tractor (a little lawn tractor), skidooing in the winter, and lots of swimming in the summer. They like to Bar-B-Que. Most of these things we do with Troy at home as well.
Troy's favourite thing to do is go bike riding. It gives him freedom and confidence, although he's still not that aware of traffic, and it's a little scary to ride with him. We do let him ride alone as well. He has a small route that he is allowed to ride around the neighbourhood.We live on a small side street that goes to a dead end with a park and Troy knows how far, and for how long he can ride. If he doesn't come back on time, or goes where he's not allowed, we take away his riding priveledges for a day or two. Most of the time he listens, and does as he's told, but once in a while (when he's having too much fun), he forgets. When he does forget, we just let him know that he's late, and he always apologises right away. The privelege of riding the bike is one of the more important things for Troy, and he is very good at respecting the boundaries we set out, because he doesn't want to lose the privelege. Another boundary that Troy needs work on is respecting other peoples property. He does not comprehend that playing on someone elses driveway or lawn is tresspassing. We have to remind him that it's not his yard, and he should not be there without permission. This is an ongoing problem that we have to remind him of every day.
Troy's table manners are improving a bit, but he still thinks that burping and farting are cause for a good laugh, with no thought of saying excuse me, unless we remind him. It seems to depend on his mood. One time he will say excuse me right away, and the next he's giggling and laughing. When he does apologise, he's still laughing as he says it. He thinks it's a great joke to fart in his sister's face at every opportunity. This usually starts a small war, with Shyann hitting him, and then him hitting back, until someone comes crying "MOM, HE/SHE HIT ME!".
August 11, 1999
Today Troy and I visited Dr. Duncan. Unfortunately, Troy's ADHD is not going away, but combined with autism, it is very confusing which disorder is the most prevalent. It seems his ADHD is severe, and his autism is mild/moderate. We thought his ADHD was going away with age, however we are just used to his hyperness, and did not realize his attention deficit, obsessive/compulsive disorder, and autism were as severe as this. Though Troy maintains a fairly normal life, we thought the ADHD had subsided. We assumed it was his autism making him behave the way he does.
Troy's new prescription (yes, another one) is for 30mg of Valproic Acid. (Depakene, Depakote are brand names). This website explains what the drug is mainly used for (Epilepsy), and some of the uses and effects. This drug can also be used for ADHD children to help regulate neuroelectrical activity. Tonight is the first time Troy has taken it. In one week, Troy has to get a blood test to make sure he is not suffering from any side effects. The most annoying part of any drug prescribed for Troy is figuring out a dosage that works. Too much, and he's a zombie, too little, and it has no effect. We've even tried some "natural" therapies (aromatherapy, and other naturopathic medicines), and none of those work for him at all. (One lady recommended accupuncture and accupressure.)
As a humorous aside, one of the people we are in e-mail contact with has just had her ADHD/Autistic child prescribed with the same drug. It seems to be working well. When we went to the doctor's today, he was thinking about this drug even before we mentioned that we had heard about it on the internet.
Troy has been having a good summer swimming, biking, and he's exited about us moving too. (Sept 25th or so) It's only a few blocks, but he actually seems to be looking forward to the change, instead of being terrified of it. We're still trying to figure out the "do's and don'ts" about autism.
I have faith in Troy that one day the autism will just be a bad memory. He may never grow out of it, but we think he will learn to accept it, and be able to live a normal life without medication.
August 24, 1999
Two weeks ago Troy went to see Dr. Duncan, for his 6 month check-up. I found out that Troy has severe ADHD, and mild/moderate Autism. This news is a little devastating, as I had thought his ADHD was fading with age. He still is hyper all the time, but his overall behaviour seemed to be getting better. Although the doctor is concerned with Troy's ADHD, I am more concerned about his autism. His whining, and immaturity when he doesn't get what he wants (instantly) is more of a problem now, than ever before. Dr.Duncan left the decision up to me, wether to treat his ADHD (mostly hyperness), or his autism (obsessiveness, immaturity). As Troy is going back to school soon (Sept. 7th), the major concern is to treat his autism. We want him to be mature enough to handle the new school, the workload, and get along with his peers and teachers. The decision was made to keep Troy to just one medication, as any mixture of meds (for ADHD and Autism) taken together seemed to make him violent. In some cases this doesn't happen with all children, but with Troy it does. The hyperness we can handle, as we're just used to it (and it helps keep us in shape!).
The new medication (Valproic Acid) we are trying, seems to work for about 8 to 9 hours. The prescription calls for taking it 12 hours apart, and the 3 hour difference is quite noticable in Troy's behaviour. We went to the clinic for the blood test last Thursday. The results always take forever, and we won't find out until Friday if everything is OK. (Look for an update!)
September 13, 1999
I'm proud to say that Troy's first week back at school was awesome. He did very well in all his subjects, and we had no "incidents" of any sort. Troy gets along great with his new teacher's aide. The principal seems to understand Troy's autism, and together, we work as a team, so there are no "incidents". This makes me feel good about the school. Troy is in a regular grade 7 classroom with his peers, and enjoys being there. Although he is on an "Individual Education Plan"(IEP), he participates with the class for all subjects during the day. We meet with his teachers, principal, school counsellor, and teacher's aide once every 3 months to discuss revisions to the IEP. Troy is fascinated with numbers, and loves to count things, play cards, and dice. This helps him alot in his math. The one sport he seems to really like is basketball, and shoots "hoops" outside every day during his breaks. He is still taking the same doseage of Valproic Acid, which has calmed down the whining alot, although it still happens a bit at home. We go back to see Dr. Duncan on the 17th of Sept to see if anything changes. All is well for now.
October 17, 1999
As of October 17th, Troy turned 12!!! We went to Scandia (like a mini Disneyland) with minature golf, pinball, and lots of games, and had a good time. Troy even beat me at mini-golf.
November 17, 1999
Went to see Dr. Duncan on the 17th of September, and the dosage of Valproic acid stayed the same, but as the months wore on, Troy has become even more hyper and hard to handle. We went to see Dr. Duncan again on the 4th of November. We talked about his hyperactivity and his inability to focus. He has had problems concentrating at school because he's so hyper. Dr. Duncan asked me again if I'd like to try yet another medication for Troy. We are going to try imipramine (Tofranil) starting December 1st. We have to wait a week or so with no meds to get the valproic acid out of his system completely. The only severe side effect we may have to worry about is high blood pressure. A week after Troy starts the imipramine he will get an EEG at the hospital.
Troy is still a very happy boy, he just likes to take control of situations, and is very stubborn, more so now that he's not taking any meds. Updates will be here after December 7th to let you know how things are going.
December 11, 1999
The imipramine was a flop. Didn't work at all, and so we had Troy back on Clonidine and Valproic acid for about 4 months. He's since quit taking the valproic acid completely, but his dosage of Clonidine has increased considerably. It seems to work fairly well, although he still has his tantrums.
January 2, 2000
Jim and I were married at 1:30 pm on New Years Eve! We just had a small wedding with about 10 people in our home. Most everything went smoothly, except Troy as the ring bearer forgot the rings. There are a few pictures here.
I started work full time on December 3rd, and that has been really hard on Troy. Jim is staying at home and being Mr. Mom. I was working swing shifts, and it was really hard. In February, Troy got his cast off on the 4th, and I started a new job on the 28th. It's straight days (no nights 'till 1 or 2 am!), weekends off, and better pay too.
Troy slipped and fell in the kitchen, and broke his foot on Dec 28th. He spent 8 weeks in a cast, hobbling around (we couldn't get him to use crutches), and this put a damper on his winter fun in the snow.
We had a really good Christmas. Troy and Shyann were both spoiled.
January 12, 2000
I finally met my birth mom, after 38 years! She and her husband Leo, drove out from Ontario and stayed a few days in October, for my birthday. We talked a lot, and seemed to have much in common. Troy and Shyann were very excited to finally meet another Grandma.
February 28, 2000
I love my new job! Too busy to update much, more later.
Through March and April, everything went as well as expected. Troy is doing well at school and the club, but still fights with his sister about everything.
May 16, 2000
Major updated news. I realize it's been a long while since I have done anything on these pages, but here goes.
Earlier in May Troy had an "incident" at the Boys & Girls Club, so we've decided he may need a break from it. He's been going there steadily for 5 years, and it's just time for a change. We're looking into finding some other after school activities for him 3 days a week.
Mother's Day was a joy. Troy went with Jim, and picked out his own present for me. It's a beautiful tall old fashioned kerosene lamp. I have had 2 others, but always managed to break the chimneys off them. Shyann made a nice card at Sunday school, and also brought home her Autobiography which she made in school. Jim got me a miniature rose (white) that has lots of blooms on it. I may plant it outside eventually.
September 3, 2000
Sorry I've been unavailable lately. Too busy working full time, and travelling with my family. For the good news; Troy is still taking Clonidine, and it's working great. We had to put him back on 50mg of Zoloft once per day, because of his anxiety attacks. He sometimes gets pretty overwhelmed by it all. Troy will be starting in a different school this year (in 2 days!), the only difference is; now that I'm working, my "stay at home dad" husband, will be taking the responsibilities of whatever happens at the school. I'm so used to staying at home, maybe it's me that should be on the Zoloft for MY anxiety. (haha). Jim is a wonderful husband and dad, and I know while I'm working, everything will be handled carefully. With any luck, I'll be able to do an update within a month or so.
October 7, 2001
On the 17th of this month, Troy will turn 14 years old, and he's in grade 9, and doing well. His medication has been increased because he's grown so much in the last year. He's now 5`9" and 175lbs, built like a football player! As Troy gets older, he seems to be easier to handle, he's back in respite (which is a Godsend for me, it's been over a year). Troy enjoys going to visit very much, and always has a great time.
In school this year, they are teaching him to cook, sew, design things on a computer, safety rules, and plenty of physical activities in P.E. The teachers at his new school are absolutely the best, they really care about him, and how he's doing. Troy is also working part time in the school store, where they sell candy, pop, and snacks at lunch time. The extra money they make is used for a big trip in June to Victoria (for the challenged children) for the B.C. Special Olympics.
