To all Parents of kids with ADHD

[DisneyDork712]

I don't really know much about ADHD, so I'm afraid I can't offer any advice. I don't even have any kids - yet! I have had several kids at work with ADHD though. I just wanted to say good luck with whatever you decide!

 

[FayeW]

Thanks so much for the info regarding the sleep deprivation. I've spent most of the morning reading articles on the melatonin and other medicines you've mentioned. I'll try to talk to my Dr. today.

Because I've noticed limited sleep patterns in Chase since birth, I've often wondered which came first, the chicken or the egg (the sleep disorder or the ADD). I'm anxious to try anything that might give him the restful sleep he needs.

My daughter also has a severe sleeping disorder. I used to give her Benadryl to put her to sleep, but it wasn't keeping her asleep. She would wake up at 3 or 4 in the morning and watch TV ( an ADHD child unsupervised while the rest of the family is asleep...not what you want!) She has been taking Clonodine for a few years now, and it has made a huge difference.

The problem is that alot of the symptoms of ADHD are shared with sleep deprivation. It is kind of a "which came first, the chicken or the egg" situation. It's hard to know what to do. You just pray and hope things turn out right.

 

[JoiseyMom]

What a great thread!! It is so great to see I am not alone.

OP, I know what you are going through!! My ds is 5 1/2 and in Kindergarten. He is in a full day private program. I actually followed a specific teacher, when the pre-school he was going to, was not going to be able to have the Kindergarten class, and I lost a months tuition (almost $600) to be with his current teacher. We have know for a few years that he was ADHD, he was offically diagnosed this summer, when we took him to DD's neurologist. He suggested several meds, but I wasn't ready to medicate yet. My pediatrician also doesn't believe in medicating until first grade. Well, my son's teacher sat down and had a talk with me. My son, cannot sit still in class, and even though he is very very bright, and is following all the material, he is all over the place. It didn't come as a total surprise, he is on the go from first thing in the morning, until he passes out at night. Now this teacher is wonderful, she was DD kindergarten teacher, and knows both my kids. We are now in process of trying to obtain Daytrana for DS, but we can't get it anywhere in the smallest dosage. I am waiting to hear back from our neurologist. I honesly don't want to medicate him, but I don't feel we have a choice in the matter.

Now, DD10, has epilepsy, ADD and tourettes. She is on 2 anti-seizure drugs and has been seizure free for 18 months!! She takes clonidine to help her sleep, and it does wonders. We put her on Daytrana 1 month ago (the same time we wanted to put DS on it), and she is doing better in school. We had her teacher conference the other night, and both her teachers (she is in a class with two teachers) say that they have noticed a change in her behavior. She is more consistent in her class work, not as fidgety, and is making the first move in social situations. DH and I were thrilled!!! I hate the idea that she takes 3 types of meds, not counting her allergy meds during the non-winter months, but it is helping.

All I can do, is suggest a try out of the drugs, if diet doesn't work.

Good luck and keep us posted on what you decide to do!

 

[Tigger2252]

What a great thread! My 12 yr. old dd was diagnosed with ADHD when she was 9. The diagnosis came after 5 horrible school years. She had so many problems in kindergarten (distracting other, eventually removed from the story rug to sit at her table during story time) we contemplated taking her out for another year. She struggled through first grade and repeated second grade. Finally after almost weekly phone calls from her 3rd grade teacher I had her tested and diagnosed. I was very resistant to medication as well, but finally relented after much soul-searching and research. She began taking Concerta that year and she had a much better school year. Because she is thin she eventually was switched over to Adderal. She took that up until this summer when her neurologist diagnosed her with Tourettes. He switched her to Strattera because the stimulants aggravated her tics, he also prescribed Clonidine to help control them. One benefit she got from the medication change was better sleep habits. She had never slept through the night since the day she was born. Finally, at 12 she slept through the night. I have agonized over having to medicate her, but know from our experience with her that she is a child that needs it. Good luck with whatever you decide.

 

[spokanemom]

I won't post the long drawn out drama, but my 12 yo was diagnosed with ADHD in 1st grade. After being removed from his 1st grade class about 3 days out of 5 for behavior issues (knocking down his desk, yelling at other kids, COMPLETE inability to focus on anything) he was put on Metadate CD. It is a once a day pill. We have never had issues with it.

I struggled with whether or not meds were the route to go, and we tried many other options, but we tried the Metadate and I must say that he is glad that he takes them too. He is a happy well adjusted 7th grader (ok, as well adjusted as a 7th grader can be... ). But we are happy with the decision.

I only offer you peace with whatever decision you make. You will do what is right for your child.

 

[wvdislover]

My DD9 was diagnosed with ADHD when she was 5 and in kindergarten (although I knew when she was only 1 or 2--couldn't attend to any activity for more than about 30 seconds!). My DH wasn't real sure about putting her on meds, but went ahead with it, just to try it out. Before meds, she would just scribble when she colored. About 2 weeks after starting on her meds, I showed my DH a picture our DD had colored, and she had stayed in the lines and colored appropriately. It took some convincing for him to believe that she had actually colored the picture. He said, "How did she do this?" My reply..."Her meds." He was convinced. We tried Adderall, but it made her sick, so we switched to Concerta, which we stayed on until last year. We then changed her to Focalin XR, and added Prozac, for anxiety issues. The Focalin didn't do a whole lot for her impulsiveness (a major issue for her), so we recently added Straterra to her daily dosings, which we give her in the afternoon with a low dose of Ritalin (to get through homework time and everyday life). For us, meds have been a lifesaver--we can see a real difference in our DD. She has a number of disabilities, including ADHD, anxiety issues, sensory integration disorder, autistic tendencies, Asperger's, and a fine motor delay. There may be more there, but that's all that's been diagnosed, so far. She is passing school (C's and a couple of D's, that her teacher is hoping the Straterra will help bring up). Her special ed. teacher, who comes in to see my DD for 30 minutes every afternoon at school, says that she's just impressed that my DD is passing school, with all the issues she has going on. Without the meds, I hate to see where she'd be now. Life is not perfect for us, but it's pretty good. We have good days and bad. You just take it one day at a time. You learn to stay on top of things at school to make sure your child isn't falling through the cracks, as can easily happen with ADHD kids and mildly autistic kids. This is our story, one which continues to be written daily. I wish you hugs and lots of luck in writing your own with your DS!

 

[jmskinner]

My DS8 (TODAY!) is on Strattera. He is ADHD, Sensory Processing Disorder and signs of Aspergers. You now have me researching the HFA because I have never heard of it and my DS has a lot of socialization issues. We started him on medication at 5. He was diagnosed at 4 and we didn't want to consider medicine until he was in school. Well, after dealing with a daycare kicking him out we went to see his pediatrician to speak with her about medication. Her first comment was she would not consider it until he was six. Within 5 minutes she had changed her mind and referred us to a child pschiatrist. We started him on clonidine. That first day he slept a lot and we were concerned because that was our worst fear. But within two weeks I noticed toys he was previously throwing across the room in frustration within 5 minutes of playing with them, he was now able to spend two hours playing with. Now, medicine didn't cure everything. Kindergarten and first grade were horrible, but we now have switched him to a different school in our district and the difference is amazing. Last year I think we had about 6 different ARDS and he spent 9 weeks in a classroom where he was in cubical all day. So far we have only had one this year and that was the yearly review. And, it only took 30 minutes. Previously it was always almost 2 hours. I also never took him shopping, he stayed home with DH if I had to go to Wal-Mart or somewhere. Now I take him everywhere. He is not perfect, but I think a perfect child would be boring.

My DS8 spends the first hour of the day at school with a special ed teacher who goes over any work he did not finish the day before and any work that requires a lot of instruction. This helps his teacher out because she is able to give the long instructions to the rest of the class, where previously he would disturb the class. So the class is receiving their instruction and so is he. He has a desk separated from the rest of the class, but he is given the whole back of the classroom to move around this way and it doesn't disturb the rest of the class. At the end of the day he has an aide (local college student) come in and help him finish the day. If he starts misbahaving and not listening he goes to the office and if they are not able to handle him he goes back to the special education teacher. At his previous school the office couldn't deal with him at all, I was constantly having to go get him. All this office does is give him a stack of books to read and he will normally do so immediately. It is only when a lot of people are in and he gets distracted that they can't handle him.

I don't know how other schools handle reading, but here the child reads what they call Accelerated Reading books and takes a test on the computer. My boy loves taking the tests, so that is actually a motivator. He can't take the test until finishes his work. DS hates to write and that is where a lot of his frustration comes from.

I have also started working part time so I am able to spend more quality time with in the evening instead of rushing to get supper, homework, bath and the bedtime. The stress level in the house has went way down.

I noticed a lot of people were mentioning sleeping problems. I actually had a sleep study performed on my DS. It wasn't easy because they place all these probes on him and the one up the nose was horrible. There wasn't any really significant but they did say he awoke more than he should have. We took him to an ENT (which we probably should have done first, but he had seen one when he was 4 because we had hoped it was his tonsils and not ADHD). The ENT said his tonsils were large, not overly huge, but large. They said with the size of the tonsils and the results of the sleep study they would recommend removing the tonsils. We did and he sleeps a lot better now and we noticed an improvement from that. The old school did say his frustration level did improve. Even though there are high risks with any surgery, I would recommend anyone looking into it. Especially if your child snores. DS did only snore a little. One down side is DS is a picky eater. I had heard several stories of people whose children couldn't smell and they didn't realize it until after the tonsils were removed. Most children start eating better because now they can smell the food. Not my DS. Now everything stinks. Even the popcorn smell at the concession stand at the movie theater stinks to him and he walks around with his shirt over his nose. But within 15 minutes of putting him to bed at night he is asleep now. And I can tell he is getting a much better sleep.

Sorry this is so long and I hope it helps. We have to move next year, just don't know where yet. I know I will be posting on this message board for any ideas on schools districts when I know what area we will be moving to.

I hope everyone has a wonderful Sunday.

 

[Mish]

My DS(8) was diagnosed at 5 with ADHD, He is unable to swallow pills so we could not medicate him. This year we started using the Patch it is called Datrana. All I can say it what a difference. He is doing so much better in school no more fighting to do homework. Weekends are not as stressful.

 

[Pembo]

My ds now 10 was diagnosed at 4. We held off on meds on until 1st grade and they have made a world of difference. We started on Focalin and last year switched to Concerta. He saw a psychologist for many years but until last year (age 9) it didn't help him. It is only recently that he is beginning to understand his disability and how it affects him and how the medicine helps.

A wise doctor once told us that if you take Adhd meds and don't really need them, they will have the opposite effect. (crank you up instead of calm you down). Ritalin stays in the body for such a short time that I would have no fear in giving it to a child. If you child is truly ADHD you will see an improvement. Proper dosage and the proper meds will not change your child, just allow him to shine.

We found an awesome psychiatrist last winter who is extremely knowledgable in adhd meds and that's why we switched to Concerta.

Trust your doc. At least try the meds. Keep a journal of behavior, both positive and negative after trying the meds. You may have to try different meds to find the one that best benefits your child. Remember, if your child had diabetes, you wouldn't hesitate to try meds. ADHD is a chemical imbalance and medication will help.

Good luck to you.

 

[wvdislover]

Remember, if your child had diabetes, you wouldn't hesitate to try meds. ADHD is a chemical imbalance and medication will help.

Thank you for saying this! I wish more people would understand this and not treat parents of ADHD kids like bad parents who are just drugging their kids to make them behave.

 

[NewEnglandDisney]

What you do need to remember is that that most ADD/ADHD drugs are amphetamines of some sort. Speed.

Speaking as someone who has actually been diagnosed and taken them as an adult, yes, they can remarkably change your behavior. But they are not a pancea. In kids with hyperactivity, their bodies and actions appear to slow down because speed makes one more introspective, but what's going on in their heads is not always representative of that.

It's just important to know what you are giving your child. Now, I'm sure many people will disagree with me, but as someone that has actually taken the drugs before, I really recommend you take just one yourself before you give them to your kid. Again, I'm sure many people would believe that to be wrong, but it's honest as someone who has the diagnosis and has been on the meds before. I say this because I knew someone who had a child that once on ADD meds (dexadrine, which is the purest when it comes to being an amphetamine) would be found standing up in his room in the middle of the night, fully awake. They had no idea why. They didn't realize that it is mostly speed. Dexadrine in particular is the same chemicals, the same brand name that used to be sold as diet drugs in the 70's ("black beauties", etc.), or that they used to give narcoleptics to keep them awake (before they knew how to attack nacrolepsy more passively).

No one but you can decide if it's best for your child or not, and I know my opinion may be controversial, but these aren't passive drugs. They actively change your behavior and perception of the world. It's a big decision to decide to make them a part of your child's life. An honest doctor is going to explain to you chemically what these drugs are. I had a very experienced psychiatrist once explain to me the chemical differences between dexadrine and cocaine - they are remarkably similar. They are very powerful. That doesn't mean you should or should not use them, but while getting other points of view from a message board, only you will know what is right for your child.

NED

 

[JoiseyMom]

What you do need to remember is that that most ADD/ADHD drugs are amphetamines of some sort. Speed.

Speaking as someone who has actually been diagnosed and taken them as an adult, yes, they can remarkably change your behavior. But they are not a pancea. In kids with hyperactivity, their bodies and actions appear to slow down because speed makes one more introspective, but what's going on in their heads is not always representative of that.

It's just important to know what you are giving your child. Now, I'm sure many people will disagree with me, but as someone that has actually taken the drugs before, I really recommend you take just one yourself before you give them to your kid. Again, I'm sure many people would believe that to be wrong, but it's honest as someone who has the diagnosis and has been on the meds before. I say this because I knew someone who had a child that once on ADD meds (dexadrine, which is the purest when it comes to being an amphetamine) would be found standing up in his room in the middle of the night, fully awake. They had no idea why. They didn't realize that it is mostly speed. Dexadrine in particular is the same chemicals, the same brand name that used to be sold as diet drugs in the 70's ("black beauties", etc.), or that they used to give narcoleptics to keep them awake (before they knew how to attack nacrolepsy more passively).

No one but you can decide if it's best for your child or not, and I know my opinion may be controversial, but these aren't passive drugs. They actively change your behavior and perception of the world. It's a big decision to decide to make them a part of your child's life. An honest doctor is going to explain to you chemically what these drugs are. I had a very experienced psychiatrist once explain to me the chemical differences between dexadrine and cocaine - they are remarkably similar. They are very powerful. That doesn't mean you should or should not use them, but while getting other points of view from a message board, only you will know what is right for your child.

NED

Well I disagree with you. Taking the ADHD meds I give my children will not do the same to me as to them, because I do not have the chemical imbalance that is causing their ADHD. So it will not be the same. Both my DD and DS have ADHD, and the meds that are working so wonderfully for my DD aren't doing diddly for my DS. So having a parent take the same drugs as their child isn't a valid test for how thier child feels on it.

I haven't wanted to put my DD on any drugs for her ADHD, I was hoping to work with her through behavior and diet. She was also on so many drugs for her Eplipsey that I didn't want her on any more. We tried her on Strattera and it lowered her seizure threshold, so we took her off that, and waited 2 years to try something else. My DD who is very bright, but whose grades in school where all over the place from A - F, mostly lower grades, is now bringing home straight A's. She is able to concentrate and study and has very little unfinished work in class. We are so happy with her performance and she is so happy with herself. Her self confidence and self esteem is growing and it is wonderul to see her flourish this way. She is no longer saying she is stupid and can't do it. I am sorry I didn't do it sooner.

No we are hoping to find the correct meds to help our DS.

 

[LauraAnn630]

I totally agree with
JoiseyMom
Well I disagree with you. Taking the ADHD meds I give my children will not do the same to me as to them, because I do not have the chemical imbalance that is causing their ADHD. So it will not be the same.

I also agree you have to be very informed and involved with your doctors and decisions.

Everyone can react different to the same medications.

We just started DS on an ADD med. We have all seen a huge change. His grades were great!!!!!
He is 10. The doctor asked him questions about how he feels on this med.
He says he feels great. He didnt answer one question that we were concerned about his answer. Hes on a good sleeping schedule.

The biggie is the long term side effects. Thats what im concerned about.

 

[riu girl]

The biggie is the long term side effects. Thats what im concerned about.

The long term side effects are my main concern also the most prevelant being the permanent physical changes to the brain as proven time and time again during autopsies in children who have died (deaths NOT related whatsoever to the meds) while on ADD/ADHD meds.

 

[mouseketeer_mom]

The long term side effects are my main concern also the most prevelant being the permanent physical changes to the brain as proven time and time again during autopsies in children who have died (deaths NOT related whatsoever to the meds) while on ADD/ADHD meds.

As a parent of a child with ADHD that is currently taking Concerta, how do I deal with this?

We (my DH and I) were so resistant to medication. We tried everything! Our sons pre-school teacher requested an ADHD evaluation when he was barely 4. We paid out of pocket just so that he could see a psychologist that specialized in children with ADHD and specialized in children under 7. (yes, two specialties) We changed preschools, we tried behavior mod, we tried diet. We refused to medicate him at that age and the psychologist agreed. But what a struggle! Finally, when he turned six, we tried meds as a last resort. (it was a last ditch effort to keep him from repeating a grade) In two months he no longer was at risk of being held back. In three months he was out of a two to one reading intervention and off the summer school list. Less than a year later, he is working above grade level.

I felt like it was a miracle drug. The changes it brought both academically and socially was amazing. His self esteem, confidence, social skills etc, blossomed.

And then I here things like the above post. How do I deal with this as a parent? Where do I find the balance between offering him the means to happiness and success as he grows and develops as a young man and something that may cause changes in his brain that may be harmful?

 

[Cheshire Figment]

The long term side effects are my main concern also the most prevelant being the permanent physical changes to the brain as proven time and time again during autopsies in children who have died (deaths NOT related whatsoever to the meds) while on ADD/ADHD meds.

I'm just wondering. Are there published, peer-reviewed, studies on this or is it only anecdotal in nature? This is such a strong statement that it would be nice if you could provide some substantiation.

 

[riu girl]

O my goodness, the last thing I meant to do was to upset anyone with this post. I am truly sorry if I have done this.


I found this information in a scientific psychology journal ( in the reference department at Trent University , Peterborough, ON) while studying for my B.Sc. (before I even had a child with ADHD).

Having a child with ADHD, I have since mentioned this info. to 4 different drs/therapists. 3 of the 4 had not even heard of this potential side effect.

 

[SueM in MN]

Adding my voice to those who suggest NOT taking the child's medication. It will not work the same in someone with ADD as someone without ADD. It is a stimulent for people without ADD (and could be harmful). The same drug does not work as a stimulent for someone with ADD.

I would also be interested in seeing autopsy studies related to the long term effects of ADD drugs. My concern would be how do you separate out the changes related to just having ADD/ADHD and the changes related to having ADD/ADHD and being on stimulent drugs?

I know there have been brain imaging studies that show that the brains of people with ADD/ADHD work differently (different areas activated) than the brains of people without ADD/ADHD. When on the stimulent drugs, their brains tend to work more like people without ADD. This site has some interesting links.

I can't find any of the actual study reports right now, but I have read studies that point to there being a connection between children who did not receive any treatment for ADD/ADHD and later substance use to sort of self-medicate.

When one of my nieces was diagnosed with ADD, one of the things the doctor suggested was a medication trial with both a real drug and a placebo (inactive drug). The doctor knew which was which, but my niece, my sister and the teachers didn't know which was which. She took the real drug for a period of time and the placebo for the same period of time. She could tell a definite difference when she was on the actual medication. She said that her brain finally felt quiet so that she could concentrate on one thing at a time instead of being pulled in all directions. I know at the time, the doctor they were working with told my sister that the drugs worked best in conjunction with techniques to help her DD to organize and deal with the ADD. My niece did use the medications thru elementary and middle school, but decided to try without them in high school. She did fairly well in high school and actually worked as a waitress - not a job I would think of as one someone with ADD would be good at, but she was an excellent waitress.

 

[mouseketeer_mom]

She said that her brain finally felt quiet so that she could concentrate on one thing at a time instead of being pulled in all directions.

Wow, this is the exact same way my son articulated feeling while on his medication, same language. "My brain feels quiet enough to concentrate"

To riu girl: I certainly didn't think you posted regarding the change in brain just to get people upset. I truly appreciate hearing about any research of ADHD and the medications used to treat it. The reality is, not all research is "sunshine and roses". As a parent, I have to look at all the information available. So, thanks for sharing what you read

 

[JoiseyMom]

We are also worried about long term effects, but ritilan has been around a very long time and so far so good. You also have to weigh the side effects of them not taking the drugs. Poor grades, poor socialization, poor self esteem.

For us, the drugs have been wonderful. Now we are hoping that strattera helps our DS. He is currently in kindergarten, and I want him to be able to start 1st grade and be a wonderful student and the best that he can be.