To medicate or not to medicate that is the question??

[Ibbygirl]

Hi everyone. I'm new here. This is my first post actually. My name is Jennifer and I have 2 kids with special needs. My son (8) has severe Autism and he goes to the Autism cluster in Public School. My daughter (11) has ADHD, OCD and Aspergers. I have homeschooled her pretty much all of her life. She went to a charter school for 3rd grade because my husband insisted that her problems were a result of her not being socialized by other kids. After 2 months of her being in school he informed me that he wanted me to homeschool her again the following year. She is extremely bright, but she has trouble staying focused. It was fine when she was younger because the work load was not as much as it is now and the material was not as complex. I would teach her, she would get it, and we would move on. We did alot of hands on learning and would always do a fun activity after book work to give her a break and let her have an opportunity to move around and expend some energy and do something else. Well now that she is in 6th grade, the math is getting alot more challenging. It's not that she doesn't understand what to do so much as that she cannot focus long enough in order to complete more complex multi-step problems and she is making a lot of careless mistakes. I am so frustrated because I feel like I am failing her. I keep trying different things and to approach the problems in different ways, but everytime she has a test she is failing miserably because she just can't stay focused. We have never put her on medication, mostly because the thought of her having to take it for so long I find very troubling and on top of that, the neurologist told us that medication for the ADHD would worsen her other problems and visa versa. I have tried herbal remedies, relaxation techniques, aromatherapy, music therapy etc and nothing helps her. I just don't know what I should do anymore. Has anyone else had this problem that can maybe offer some advice? I feel like I'm failing her miserably and I just don't know what else to do for her. Thanks to all who reply. :)

 

Jennifer

Edited April 14, 2009 by Ibbygirl

[newbie]

I just saw Jenny Mccarthy on Larry King who touts the Gluten Free diet. Might be something to try, remember with anything natural sometimes it takes months to show results.

 

Have you tried manipulatives, these work well w/my niece. Something she can hold, like playdoh, or a squishy ball that she can play w/while studying. Also, gum, I hear helps.

 

Some people on the board have had luck w/caffeine.

 

I guess, what I am trying to say is not medicate.

[WishboneDawn]

This is not something I face with my kids but rather I was the kid who was given medication. At 15 I was diagnosed with ADD and prescribed ritalin. For me it meant finally understanding that the problems I had with focus weren't the result of innate laziness or stupidity. It was like being able to slip on glasses after years of seeing everything through a fuzzy haze.

 

I think a lot of parents dealing with kids who have ADD and are reluctant to try meds often miss that part of the equation - How it might feel to be the child for whom the meds work. The stigmas around drugs is so strong that they're seen as more akin to addictive street drugs then glasses or hearing aids.

 

I don't know if that helps.

[Ibbygirl]

I just saw Jenny Mccarthy on Larry King who touts the Gluten Free diet. Might be something to try, remember with anything natural sometimes it takes months to show results.

 

Have you tried manipulatives, these work well w/my niece. Something she can hold, like playdoh, or a squishy ball that she can play w/while studying. Also, gum, I hear helps.

 

Some people on the board have had luck w/caffeine.

 

I guess, what I am trying to say is not medicate.

 

 

hehe Thanks for your reply. I haven't tried a koosh ball or anything like that when she is doing math. We aren't doing the diet in my house because first of all, I couldn't afford that diet, secondly, I'm not entirely sure that it even works. My brother has 2 kids with autism and he has all 4 of his kids on that diet. They've been on it for years and I've never seen any difference in them. I think that diet is great for kids who have allergies that manifest themself in Autistic type symptoms, but that's not the case with my kids. They're not allergic to anything. I couldn't do the diet with my son anyway because he is already as thin as a rail. He only eats, white rice, cheerios and Digiornos pepperoni pizza. All of that is off the diet, but trust me, that kid is so head strong that he would starve himself before he would eat that other stuff. He has serious sensory issues. But my daughter's math problems are really more a problem with her ADHD than the Aspergers. I've learned to work around the OCD and the Asperger's in our homeschool by phrasing things different ways and explaining the nuances for her, but it's just the ADHD is killing us in the math area because of her inability to focus long enought to solve a complex word problem. We switched from Saxon to Singapore 2 years ago and she really likes the Singapore, but it's strong suit is that it teaches you to think instead of just how to solve a certain type of problem and that is where she is struggling. On the one hand, it is good for her to have her mind trained to think problems through to solve them, but that is also where it is difficult for her because of her disability. I'm just wondering if medication would even make a difference for her at all. She has two friends with ADHD and they are both on meds. I just don't know if my own prejudice against medication is hurting my daughter or helping her. Am I protecting her from some possibly harmful substance that she would have to take over the long term, or am I making her life more difficult by not taking advantage of all the options available??

[Ottakee]

I think a lot of parents dealing with kids who have ADD and are reluctant to try meds often miss that part of the equation - How it might feel to be the child for whom the meds work. The stigmas around drugs is so strong that they're seen as more akin to addictive street drugs then glasses or hearing aids.

 

I don't know if that helps.

 

VERY good post. There is such a stigma around meds for ADHD and other mental health issues. No one questions meds for cancer, diabetes, Tylenol, etc. even though they all have risks and benefits.

 

For your dd, I think it would be worth a try. Given her other issues, you might want to see a pediatric psychiatrist to make sure you have an expert working with you on the meds. It can take several different trials of different meds to find the one that works the best for her with the fewest or no side effects.

 

Meds do NOT have to be forever. Give it a good trial and if they work, great, keep going. If not, nothing says you can't stop them (certain meds need to be weaned but the doctor can help with that).

 

My own now 12dd gained 2 years of academic skills in 6 months after we started meds. She could finally focus on her work.

[WishboneDawn]

Some people on the board have had luck w/caffeine.

 

I guess, what I am trying to say is not medicate.

 

I just want to point out that if you're using caffeine, you ARE medicating. Caffeine is very similar to some stimulants used to treat ADD symptoms - that's exactly why it works. It's simply that you're using a stimulant that is more socially acceptable and can be purchased at the grocery store.

 

Personally, I prefer meds for myself. Caffeine is hard to dose reliably, only lasts for a short time and generally involves unpleasant side effects like heart flutters and extreme fatigue when I "crash".

 

I'm going to come off sounding like a pharmaceutical ad. :D

[Ibbygirl]

This is not something I face with my kids but rather I was the kid who was given medication. At 15 I was diagnosed with ADD and prescribed ritalin. For me it meant finally understanding that the problems I had with focus weren't the result of innate laziness or stupidity. It was like being able to slip on glasses after years of seeing everything through a fuzzy haze.

 

I think a lot of parents dealing with kids who have ADD and are reluctant to try meds often miss that part of the equation - How it might feel to be the child for whom the meds work. The stigmas around drugs is so strong that they're seen as more akin to addictive street drugs then glasses or hearing aids.

 

I don't know if that helps.

 

Thank you so much for your reply. This is exactly what I am asking myself. Am I harming her by not exploring meds. Can you tell me more about your experiences before taking the meds and how they changed after taking them? You can PM me if you prefer but I really am interested in how they affected you. Thanks so much. :)

[EKS]

Here's the thing about stimulant medication for ADHD: You can try it one time and you'll know if it helps. Or you can try it every morning for a week. There is no need to put her on it for 6 weeks to see if it will work because it either works or it doesn't. And you'll see certain negative side effects, particularly worsening anxiety, right away as well.

 

I didn't medicate my son for 12 years and everyone struggled with his symptoms. Now he is on a very low short acting dose of Adderall once in the morning on school days and it has made a *huge* difference in his ability to do his work.

 

I was at the same point with him that you seem to be with your daughter. I had tried everything and he was still taking 5 hours to do his math. I finally decided that maybe medication was the missing piece and so it was. I still don't like that he is on the stuff but I do like how it helps him.

 

You could do a short trial, see if it works and if it makes her other symptoms worse, and then you'll know.

[Ginger]

My son is almost 9 and I've fought the meds for years. Last month I agreed to a 2 week trial of Strattera. I saw no improvement in his attention, only worsening anxiety, sadness, irratibility, and pychotic episodes. It was crazy.

 

I went back to the doctor today. He thinks I should have stuck with the Strattera, but I said I couldn't go through that again. So I'm starting a trial of Vyvanse(spelling?) tomorrow. I think my son may have depression and/or bipolar. So I'm sure the strattera excacerbated that, even though the doctor didn't seem to think that was the case.

 

I'm at my wits end with him and have to do something. I'm worried this new one will also have unpleasant side effects, but I would just like to see if anything helps improve his attention. Then I could narrow down whether it is ADD or something else. I'll let you know how the trial goes.

[WishboneDawn]

Thank you so much for your reply. This is exactly what I am asking myself. Am I harming her by not exploring meds. Can you tell me more about your experiences before taking the meds and how they changed after taking them? You can PM me if you prefer but I really am interested in how they affected you. Thanks so much. :)

 

No problem! What I really remember most from when I first took them was simply having Aha! moments all the time. So THIS is how it feels like to be able to pay attention to just one thing at a time without being distracted! So I really CAN read a textbook page just once and actually absorb what I read! I mean, how can you beat the wonder of realizing that in the past few minutes you 1) decided to sweep your room, 2) made a quick plan to get the broom, bring it back and sweep the room and then 3) you really did it? Actually carried it out without any distraction? Okay, you probably can :) but that was big time stuff for me and I found it amazing.

 

I take it now (although I didn't for about 15 years) and it still helps in the same ways. Those days where I have a good sense of time, can plan out the day, can focus on what I need to do, have an even and reasonable temperment and I don't get lost in time or some trivial matter tens to be days when I've taken my meds.

 

I can't remember side effects from when I was a teenager. I do remember the occasional day when my mood seemed very dark and I associate those with the ritalin but I'm not sure that's accurate. My parents tended to remark that I usually seemed much more even and clear headed and content when I took the meds.

 

Nowadays the big side effect I notice is a lack of appetite. Some people don't think that sounds so bad but it really can be a pain. If I'm not careful I can end up shaky, tired and sick at the end of a day because I took a pill and then didn't eat. I am careful now though. I eat a good breakfast and make sure to eat throughout the day.

 

I think the important thing is though that meds aren't magic. If I don't get a good sleep, eat well, get some exercise and build some routines into my day then the meds aren't going to make much difference. That's important to remember for kids. Meds are just one tool and by themselves won't accomplish anything of lasting value. It's like a child who can't read because they've got bad vision. Getting them proper glasses won't allow them to read, just let them see clearly so you can help them learn to read. I

[mom4him]

I just saw Jenny Mccarthy on Larry King who touts the Gluten Free diet. Might be something to try, remember with anything natural sometimes it takes months to show results.

 

We did not find this to be true for our son. We went on the Specific Carb died and within 3 days we saw night and day difference.

http://www.breakingtheviciouscycle.info/

http://www.pecanbread.com/

These two web sites will give you a wealth of information.

 

The other thing that we have done is go Chemically Free. ALL products used in our home for cleaning, personal products, laundry are fragrance free and natural. We don't have any air freshners, candles etc in our home and we work hard at not going to places that are toxic with these items. Our extended family don't wear fragranced products to our home.

This made the second step for his attitude to adjust and his learning to totally take off. It was amazing to 'see' his brain clear up.

 

Neither of these have been easy moves as the diet has to be total commitment. I have had a conviction to keep my ds off meds if at all possible so when we saw the differences in him it wasn't hard to follow through.

 

If you want more info from me send me a pm.

[hsmom27]

Just the chime in on the diet issue... We tried the diet for over 2 years, with amazing results. Then, one day DS got and quickly scarfed down a sandwich. We waited for the side effects and none ever came. Slowly we started adding stuff back into our diet and his behavior remained the same. When we added milk back in, DS went crazy. As it turns out he has severe lactose intolerance. Because he was non-verbal, he couldn't tell us about his gastro-intestinal distress and just acted out.

 

The diet clearly works for some childrenm and that's wonderful. But usually I think it's about an underlying allergy or intolerance. When that's not present, dietary changes aren't going to make a big difference. Just my 2cents.

[Ibbygirl]

Here's the thing about stimulant medication for ADHD: You can try it one time and you'll know if it helps. Or you can try it every morning for a week. There is no need to put her on it for 6 weeks to see if it will work because it either works or it doesn't. And you'll see certain negative side effects, particularly worsening anxiety, right away as well.

 

I didn't medicate my son for 12 years and everyone struggled with his symptoms. Now he is on a very low short acting dose of Adderall once in the morning on school days and it has made a *huge* difference in his ability to do his work.

 

I was at the same point with him that you seem to be with your daughter. I had tried everything and he was still taking 5 hours to do his math. I finally decided that maybe medication was the missing piece and so it was. I still don't like that he is on the stuff but I do like how it helps him.

 

You could do a short trial, see if it works and if it makes her other symptoms worse, and then you'll know.

 

It does seem that we are at the same point that you were out. It takes on average about 4 hours for us to do math each day. The other stuff we breeze through, thank God, and she loves to read and story time is pleasant for both of us and we do alot of hands on activities in school to keep it fun and to give her a physical activity instead of just sitting, but there's just no getting around the math. hehe I talked to my husband at dinner about the possibility of trying meds for her. I thought he would give me an adamant, "no", but he listened and he is willing to go to the neurologist with me and talk to him about it. I want to do some research first on what meds are being prescribed for this condition and the side effects/dangers. If someone can give me some information on that as well I would be very grateful. Thank you everybody for contributing to this thread and being so open and willing to share your own personal stories. It really helps me to know that I am not alone and that there are other people out there dealing with the same problems that I am. It really is quite comforting. :) Thank you all so much. :)

[Ibbygirl]

My son is almost 9 and I've fought the meds for years. Last month I agreed to a 2 week trial of Strattera. I saw no improvement in his attention, only worsening anxiety, sadness, irratibility, and pychotic episodes. It was crazy.

 

I went back to the doctor today. He thinks I should have stuck with the Strattera, but I said I couldn't go through that again. So I'm starting a trial of Vyvanse(spelling?) tomorrow. I think my son may have depression and/or bipolar. So I'm sure the strattera excacerbated that, even though the doctor didn't seem to think that was the case.

 

I'm at my wits end with him and have to do something. I'm worried this new one will also have unpleasant side effects, but I would just like to see if anything helps improve his attention. Then I could narrow down whether it is ADD or something else. I'll let you know how the trial goes.

 

I'm so sorry to hear your struggle. I wish I could give you a hug. It is so hard. These kids are so special and wonderful but so challenging as well. Have you taken your son to a pediatric neurologist? They can tell you if he is bi-polar or ADD. They may also want to do tests to determine any physical causes to his symptoms. I wish you all the best. :)

 

Jennifer

[Ibbygirl]

Just the chime in on the diet issue... We tried the diet for over 2 years, with amazing results. Then, one day DS got and quickly scarfed down a sandwich. We waited for the side effects and none ever came. Slowly we started adding stuff back into our diet and his behavior remained the same. When we added milk back in, DS went crazy. As it turns out he has severe lactose intolerance. Because he was non-verbal, he couldn't tell us about his gastro-intestinal distress and just acted out.

 

The diet clearly works for some childrenm and that's wonderful. But usually I think it's about an underlying allergy or intolerance. When that's not present, dietary changes aren't going to make a big difference. Just my 2cents.

 

 

That is what I have noticed too. For kids who have allergies or intolerances, it really can do wonders, but for kids who aren't allergic, it really doesn't do anything.

[WishboneDawn]

 

The diet clearly works for some childrenm and that's wonderful. But usually I think it's about an underlying allergy or intolerance. When that's not present, dietary changes aren't going to make a big difference. Just my 2cents.

 

Thank you for pointing that out. It should be common sense that if a diet changes "cures" ADD then it's a safe bet it wasn't ADD a person was dealing with in the first place but I often see claims about diet. So many things, from stress to mental illness to a lack of sleep can cause ADD-like symptoms. It's good to keep that in mind when looking for help in dealing with ADD symptoms.

 

Not that diet isn't important but I've found for myself it's in the way that it's important for everyone - it's need to be balanced and nutritious and part of a regular routine.

[WishboneDawn]

I want to do some research first on what meds are being prescribed for this condition and the side effects/dangers. If someone can give me some information on that as well I would be very grateful

 

I think your doctor might be the best source for that. All I or anyone can offer are anecdotes. I have a friend for instance who's daughter tried (I think) Concerta when she was younger and it brought out some pretty alarming tics. But even that isn't very useful because it may have been very specific to her as she has a family history of Tourettes Syndrome. There definitely are some serious side effects with some of the meds but they're often rare, temporary and the only real way to know is to try them. The good thing about many of these meds is that theire effects diminish fairly quickly and they don't stay in the body for very long, let alone accumulate in any way.

[elise1mds]

No specific advice other than that medication does work for my son - he learned to read only after he started the medication - but BIG HUGS!

[Ibbygirl]

I think your doctor might be the best source for that. All I or anyone can offer are anecdotes. I have a friend for instance who's daughter tried (I think) Concerta when she was younger and it brought out some pretty alarming tics. But even that isn't very useful because it may have been very specific to her as she has a family history of Tourettes Syndrome. There definitely are some serious side effects with some of the meds but they're often rare, temporary and the only real way to know is to try them. The good thing about many of these meds is that theire effects diminish fairly quickly and they don't stay in the body for very long, let alone accumulate in any way.

 

Thank you for your reply. I appreciate it. I'll call her doctor tomorrow. I think for my daughter the side effects are going to be the tricky part because she has so many other issues. Her neurologist already alluded to that. She has ticks that go along with her OCD and she has the Asperger's too to contend with. Hopefully there will be some medication that she can take to be able to help her with the ADHD without exacerbating the symptoms of the other disorders. Thank you again kindly for all of the replies. I cannot tell you how much better I feel just knowing that I'm not the only one dealing with these issues. It really is a comfort. :)

[Ibbygirl]

No specific advice other than that medication does work for my son - he learned to read only after he started the medication - but BIG HUGS!

 

Oh thank you!! I'll take hugs any time! :) I'm so glad that your son was so greatly helped. That's wonderful. I hope that there will be something to help my daughter too. She is so wonderfully bright and creative. She just finished writing a book!! No kidding! A 106 page book about kids who are spies! We're going to see if we can get it published. She's such a great kid, but she just really struggles in Math. I'm going to call her doctor tomorrow and see about setting up a consultation appointment. I pray that God will just lead us where we need to go to get this kid the help she needs. I have tried everything that I could do thus far and nothing has really helped her. I hope that this route will. Thank you again. :grouphug:

[Ottakee]

Can you see a GOOD pediatric psychiatrist? I have a daughter iwth bipolar and the meds can be very tricky.

 

First of all, Strattera is NOT indicated for kids with mood disorders. It is KNOWN to cause those exact problems you mention.

 

If you suspect bipolar and/or dperession, I would see about treating that FIRST and then any remaining ADD/ADHD. Most likely you need to look at mood stabilizers first. Stimulants for kids with mood disorders that are not already stable on mood stabilizers are not a good idea.

 

http://www.bpkids.org/site/DocServer/treatment_guidelines.pdf Check out this article. It is a few years old and they now use Lamictal very successfully for kids with bipolar but the article is very helpful.

[nevergiveup]

There is one website that I frequently recommend that discusses all issues associated with using medication: http://millermom.proboards.com.

There is a large section devoted to herbal remedies, also. The ladies there do not judge--they just report studies, research, and personal experiences. They have numerous articles dealing with the subject and are also very, very helpful.

[elizam]

Can you see a GOOD pediatric psychiatrist? I have a daughter iwth bipolar and the meds can be very tricky.

 

First of all, Strattera is NOT indicated for kids with mood disorders. It is KNOWN to cause those exact problems you mention.

 

If you suspect bipolar and/or dperession, I would see about treating that FIRST and then any remaining ADD/ADHD. Most likely you need to look at mood stabilizers first. Stimulants for kids with mood disorders that are not already stable on mood stabilizers are not a good idea.

 

http://www.bpkids.org/site/DocServer/treatment_guidelines.pdf Check out this article. It is a few years old and they now use Lamictal very successfully for kids with bipolar but the article is very helpful.

 

 

I wish I had known this before letting a ped prescribe my ds stimulants. It went very badly, and then we still had the ped and school chastizing him for not taking meds for ADHD. As soon as we got a psychiatrist, bipolar dx, and mood stabilizer, he also explained to us that stimulants are NOT a good idea for kids with a predisposition for BP. WHich my ds has. It is in our family history.

[Ibbygirl]

I wish I had known this before letting a ped prescribe my ds stimulants. It went very badly, and then we still had the ped and school chastizing him for not taking meds for ADHD. As soon as we got a psychiatrist, bipolar dx, and mood stabilizer, he also explained to us that stimulants are NOT a good idea for kids with a predisposition for BP. WHich my ds has. It is in our family history.

 

 

Wow!! That's scary. So is it the psychiatrist then that shouuld prescribe the meds?? My daughter doesn't have a psychiatrist, just a neurologist and a pediatrician.

[Guest dherring]

I personally am not a medication type person. We actually do Non-medicated therapy. Perhaps there is a place like that? We have a 10yo ADHD kid and he goes to non-medicated therapy for neurofeedback therapy twice weekly. It has helped so much. I'm in GA, but maybe there is a place like that where you live? I know here in GA, there are people that drive for hours to get to this place, to not only get tested, but to continue with therapy.

 

They do not promote medication and actually help kids get off the drugs. While going to therapy, they can tell what works and what doesn't. If you are on drugs, they don't know what truly works and what doesn't in order to help the child and get them back to 'normal', so to speak.

 

My son will be going through some other therapy as well (metronome therapy, cognitive, behavior), but I chose this one first because I really wanted his brain to get back to focusing more quickly. It was to the point that he could only do one subject a day (while not on herbs) or should I say in about 6 hours and that was 10 spelling words and that was with me sitting right next to him trying to keep him focused. Yes, it was that bad.

 

With the neurofeedback therapy, they teach him to help himself (after all, kids aren't going to be on the drugs forever, or at least you hope not). With this therapy, they did a brain mapping for starters (and every so many sessions)...the therapy...let's see if I can explain it a bit. Let's say, he goes and plays a game..a bug race...he is hooked up to a wire and the computer, machine, or TV is controlled by his brain. With the bug race, if he starts to lose focus, his bug will slow down....or with the TV, it shuts down. They learn how to regain focus and the bug race resumes. With more practice, they get better and their brain eventually returns to 'normal'. With the brain mapping results, it's very interesting to see an ADHD brain and how it functions to a normal brain. The ending result will be a normal brain. With my son, they saw results better with him watching TV...a movie, etc. We could bring a DVD, etc., or they have one. Anyway, I still remember the first time they did this with him, he told me about how it went black and stopped working because his mind was starting to wander. Too funny, but he has learned to control it so much better now.

 

Anyway, I know I've talked too much about this already, but just thought you'd be interested. If I didn't do the therapy, I would go the herbal route (which is what I did before I took him off to be tested). He did great on the herbs, but had to go through the torture of him not being on the herbs to wait for him to be tested while my insurance got straightened out.

 

If you'd like to look over their website, here it is...http://www.psycscienceinst.com/

I hope this helps out!

[Ibbygirl]

I personally am not a medication type person. We actually do Non-medicated therapy. Perhaps there is a place like that? We have a 10yo ADHD kid and he goes to non-medicated therapy for neurofeedback therapy twice weekly. It has helped so much. I'm in GA, but maybe there is a place like that where you live? I know here in GA, there are people that drive for hours to get to this place, to not only get tested, but to continue with therapy.

 

They do not promote medication and actually help kids get off the drugs. While going to therapy, they can tell what works and what doesn't. If you are on drugs, they don't know what truly works and what doesn't in order to help the child and get them back to 'normal', so to speak.

 

My son will be going through some other therapy as well (metronome therapy, cognitive, behavior), but I chose this one first because I really wanted his brain to get back to focusing more quickly. It was to the point that he could only do one subject a day (while not on herbs) or should I say in about 6 hours and that was 10 spelling words and that was with me sitting right next to him trying to keep him focused. Yes, it was that bad.

 

With the neurofeedback therapy, they teach him to help himself (after all, kids aren't going to be on the drugs forever, or at least you hope not). With this therapy, they did a brain mapping for starters (and every so many sessions)...the therapy...let's see if I can explain it a bit. Let's say, he goes and plays a game..a bug race...he is hooked up to a wire and the computer, machine, or TV is controlled by his brain. With the bug race, if he starts to lose focus, his bug will slow down....or with the TV, it shuts down. They learn how to regain focus and the bug race resumes. With more practice, they get better and their brain eventually returns to 'normal'. With the brain mapping results, it's very interesting to see an ADHD brain and how it functions to a normal brain. The ending result will be a normal brain. With my son, they saw results better with him watching TV...a movie, etc. We could bring a DVD, etc., or they have one. Anyway, I still remember the first time they did this with him, he told me about how it went black and stopped working because his mind was starting to wander. Too funny, but he has learned to control it so much better now.

 

Anyway, I know I've talked too much about this already, but just thought you'd be interested. If I didn't do the therapy, I would go the herbal route (which is what I did before I took him off to be tested). He did great on the herbs, but had to go through the torture of him not being on the herbs to wait for him to be tested while my insurance got straightened out.

 

If you'd like to look over their website, here it is...http://www.psycscienceinst.com/

I hope this helps out!

 

Thank you kindly for your reply and suggestion. Is this like biofeedback therapy? I used to do that when I was a teenager for chronic migraines that I had.

[mom4him]

Just the chime in on the diet issue... We tried the diet for over 2 years, with amazing results. Then, one day DS got and quickly scarfed down a sandwich. We waited for the side effects and none ever came. Slowly we started adding stuff back into our diet and his behavior remained the same. When we added milk back in, DS went crazy. As it turns out he has severe lactose intolerance. Because he was non-verbal, he couldn't tell us about his gastro-intestinal distress and just acted out.

 

The diet clearly works for some childrenm and that's wonderful. But usually I think it's about an underlying allergy or intolerance. When that's not present, dietary changes aren't going to make a big difference. Just my 2cents.

I always know when he has botten something he shouldn't. Last spring I even tried going the Nurishing Trad. way of fixing grains. It took longer for him to react but within 2 wks we had an out of control child.

I am sure that for some people it is an allergy. For him I believe it is Leaky Gut.

[Ginger]

The ped recommended he see a pychiatrist and/or neurologist...then decided a psychiatrist would probably be the one to see. I made an apt. today for next month. Not sure really what a neurologist does when it boils down to it. But I'd love to hear opinions.

 

OTOH, my son started the Vyvanse today. Wow! He got his school work done by 1:00--normally works ALL day! Side effects are wierd, though. He is extremely talkative and says he can't stop. He says he feels really smart, as he was able to do his schoolwork with ease. But his mind won't stop working. He went to lay down, and he said all he could do was lay there and count by 3's, 4's and 5's. It's like he is on speed, which he IS. Just really wierd to see a kid act like that. But I have to say, I'm enjoying it..school was a breeze. He's been much more polite and helpful. No irritability yet, which is what I was worried about (that could come, though..it's only been a few hours). He also was totally soaking up devotions this am. Usually I have to force him to sit and listen, and he gets mad, and makes noises etc. Today he kept BEGGING me to read one more devotion. After the third one I told him we had to move on to something else. He said he could sit there all day and listen to me read them. Who is this child?? I wonder if it will be like this everyday.

[HeidiD]

My daughter (11) has ADHD, OCD and Aspergers.

 

Hi! Chiming in here, because I have a 12 yo daughter with the same profile. She sees a pediatric psychiatrist who specializes in autism spectrum disorders. He has prescribed Luvox and Clonidine. This has been the most successive treatment thus far. I agree with the other posters about avoiding the typical ADD treatment of stimulants such as Ritalin. Previous doctors prescribed stimulants for her - the OCD symptoms were exacerbated and she developed a facial tick. Under the present regimen, her focus and behavior have improved remarkably and with no noticeable side effects.

 

I just spent the morning working on math with another one of my children who also has ADD, so I understand how difficult it is. Have you checked out specific teaching methods for right brain learners? I've found a lot of these techniques are really helpful. Also, if you try to keep the lessons short and varied, (not necessarily varying the topic, but just the method of presentation), you might find that she learns just as much, if not more, with less stress involved for both of you.

[momof165]

We have tried the Gluten Free diet and it has worked wonders. It took a while to show any changes, but now - we are so happy with the results. Besides going Gluten free, we banished sweets, artificial colors, and soda. I learned to make my own joghurt, bread, and even cream cheese. I can tell immediatly when he was eating something he wasn't supposed to. Sorry, I can't give you any other advise. Just want to offer a big :grouphug:

 

Sonja

________________________________

Homeschooling JUST ONE - ds 9

[Ottakee]

Is the Vyvanse a pill? If so, the dose might be too high. It can make a kid like they are on speed or hypomanic if it too high. It might be a great med, just need a lower dose.

 

If you see this again tomorrow, call the doctor and discuss the options. He might adjust to it but often it is better to start with a lower dose and move up as needed. Some kids take very low doses and get great results while other kids the same age/size need a higher dose to even make a dent in the ADHD.

 

It sure would be nice if 1 size would fit all.

[Ginger]

Vyvanse is a capsule. I read online that you can open it and dissolve it in water, and drink only half to get half a dose. He was rx'd 30mg. I read it came in 20mg also(lowest) but I doubt I could get the insurance to pay for that after just getting the 30 mg two days ago.

 

At dinner time my son started vomiting a few times. He couldn't eat anything all day. He couldn't fall asleep till after 1 am, and then didn't sleep restful.

 

I decided not to give it to him today and call the doctor to ask about halfing it. I wonder if I could sprinkle half in pudding as I cannot see my son drinking it in water. I thought I'd let him come down off of it today, and wait until Monday to try again on a lower dose.

 

He was 'high' all day. I can't imagine giving that to a child and sending them to school I thought stimulants were supposed to calm children. He begged me to let him stay home from church last night because he was afraid he'd get in trouble for talking too much. Which I'm glad I let him stay home since he began vomiting. I really liked the positives of the med...his ability to focus and get his work done, a much more pleasant attitude. I hope a lower dose will still produce this.

[Ottakee]

I am not sure how that compares to Ritalin or Dexedrine but they both come in much smaller doseage sizes---like 5mg. Talk to the doctor about your other options.

[ClassicMom]

I didn't get a chance to read through all of the posts, but my son is on the autism spectrum (high-functioning) and also has ADHD and tourettes. We had him on Adderall for a time, but it made the tourettes impossible and he literally ate next to nothing. We have him on a medication that is used for psyciatric patients, but has also been found to be very helpful for children on the spectrum. It's Risperdal. He gets .5mg in the am and one in the pm. It has done wonders for him as far as behavior, learning and attention.

 

When he went on it, he was five and not potty trained, he sat on the potty the next day and that was that. He has come really far in his education this past year and his meltdowns are down to a couple a day compared to a few an hour.

 

You need a doctor or psychologist that is used to working with kids on the Autism spectrum. You don't want to just treat the ADHD. Your dealing with all sorts of issues with an Aspie. Generally Autism and ADHD go together and need to be treated together.

 

We found a great M.D. for our son, but went through a M.D. and child Psychologist to get there. Just make sure that the one you pick treats a lot of these children. JMO

[Ibbygirl]

Thank you everyone for all of your support, kind words and advice. I really appreciate it. :)

[Jennefer@SSA]

My ds8 (8 in a week anyway!) has an Asperger dx along with severe ADHD and SPD. We were just about to medicate with Vyvanse but decided to try neurodevelopmental therapy as a last resort. We did the gf/cf diet for 8 months with not one bit of change. That was disheartening but I am still glad we tried it. Our pedi thinks that Vyvanse tends to work better for ASD kiddos b/c so many have gut issues. Vyvanse is not metabolized in the gut so it tends to be more effective for those ASD kiddos. If we do not see dramatic improvement with ND therapy after 4 months we are going to medicate. No more waiting. The chaos in our home is just too much!

 

I hope you find peace about whatever road you choose.

[Mama Bear]

Welcome!

 

I feel a bit like a broken record these days, because I'm recommending this book to sooo many people. Healing ADD by Dr. Daniel Amen has been a phenomenal find for me and my kidlets. I cannot tell you how I wish that I'd come across it as the first ADD book I ever read, starting almost seven years ago. Dr. Amen advocates using whatever works for your child and even goes so far as to recognize vitamin and mineral deficiencies that may be sub-clinical. In the medical community, let alone the psych community, this is so rare as to be nearly shocking (to me, anyway).

 

The *very* best part of the book is the in-depth explanation of different meds, supplements, and alternative therapies. He explains the particular effect of each med, why they may have the opposite effect of that desired, what area of the brain they work on and why, and delineates the same for supplements.

 

My eldest is about to have a formal eval and now that I have this book in my "arsenal" I have no, okay, almost zero, qualms about going in and perhaps coming out with a prescription. And I'm ordering supplements *today* for myself and two friends who've done the diagnostic quiz -- we've all had our own a-ha moments over this. Somehow, none of us feels so "crazy" just knowing that there's an explanation for our distractibility -- that we're not stupid or lost or just not "trying hard enough."

 

Anyway, I'll stop now, lest I sound completely off my rocker, or as if I'm doing PR for the Amen clinic or something. ;)

 

But really (one more thing) -- if *one* person in this thread gets the book and reads it and just thinks "Oh thank God" or something similar... I don't know. It's just been a thorough revelation here. A new way of seeing something combined with solid info makes my knees go weak -- which is what "got" me about TWTM, incidentally.

 

Rambling now. Best of luck, dear. I'd love to know what you decide and how it works.

 

:grouphug:

[Mama Bear]

I really liked the positives of the med...his ability to focus and get his work done, a much more pleasant attitude. I hope a lower dose will still produce this.

 

Okay. I am not a doctor, I do not play one on TV... :D Recalling from my recent reading -- often what's happening is that the brain is really "disregulated." (Duh, right?) So what's needed is a tiny dose of a stimulant -- to wake up the prefrontal cortex -- and a small dose of something else (anticonvulsant? antipsychotic?) which gives other parts of the brain (temporal lobes, anterior cingulate gyrus) permission to slow up and become then a balanced brain. I know nothing about the med that you're describing, but based on his experience it does sound as though his dose is too high. Dr. Amen talks about sometimes giving as little as 5mg of Adderall in concert with a small dose of something else and having very, very little in the way of side effects.

 

:grouphug:

[Mama Bear]

I want to do some research first on what meds are being prescribed for this condition and the side effects/dangers.

 

See below. :)

 

I wanted also to mention that when you look at the brain scans used in the book, you can actually see that an ADD brain will freeze up when asked to concentrate -- as in math, for example -- while still having the ability to hyperfocus on other subjects and have great success in those. This fact alone about knocked me over. My eldest is that kid. So was I. Now that I'm teaching maths to mine, it's less fraught for me and I'm retaining all kinds of stuff. I always thought I was just not a mathy person.

 

We've done the heavy exercise, more Omega-3's, melatonin to help sleep, and I'll continue to use supplements whether or not we end up with a script. But man, I am looking forward to seeing what this kid can do if things are tweaked for him just a little bit. (He learned his times tables while walking up and down the stairs, other memory work while walking in circles -- somehow that motion thing seemed to free up his head a bit. Oh the tactics we employ! :tongue_smilie:)

[Ibbygirl]

Thank you. I haven't read that book. I'll check it out. :) Thank you for the welcome also. Someone PM'd me a diet that is not the gluten/free cassein free diet and I haven't tried that one, so I will try that first for a couple months and if that doesn't help, I'll start talking to my daughter's doctor. I have to see her in June anyway for my daughter's birthday physical. She is a pediatrician, but she's a really good one. She's the one that flagged my son when he was at his physical after his second birthday and told me to have him evaluated. Turned out he has severe Autism. I like the neurologist that I have too. He works at the Dan Marino Center, I don't know if anyone outside of South Florida knows of this place or not, but they treat alot of kids with Autism and Autism Spectrum Disorders. Dan Marino's son has Autism. I will talk to the pediatrican either way when I go in June. I've been going to her since my daughter was born and she's great. I've even been to her house a couple of times so I know I can talk candidly with her and she will give me her best advice. The big thing with the meds, according to the neurologist, is the side effects. That will be the tricky part is finding something that can help her focus, but not exacerbate her ticks, OCD and other issues. Ay, God bless these kids. They're special aren't they? :) hehe Alot of work, and God knows they suffer, but they are so brave and strong and wonderful. I love my kids. Sorry, for that spontaneous burst of appreciation for my kids' struggles, but I cannot help but feel it for them for how much they have to struggle to do things that I can do without even thinking about it. God bless their little hearts!

 

Anyway back on track here, hehe, I will talk with the ped. in June, try the diet for a few months and if that doesn't work I'll make an appointment to see the neurologist and go from there.

 

Thanks everyone for all of your help, support and advice. I will post back here when there is something new to report. :)

 

Thank you.

 

Jennifer

[cillakat]

We have done everything. E.V.E.R.Y.T.H.I.N.G.

 

Meds are great. I finally tried adderall as well (I was dx'd before dd but tried meds much later).

 

Wow. Lifechanging.

 

K

[specialmama]

Jennifer, I have not read a single response, because I don't want to feel condemned or anything. I know exactly what it feels like to be where you are.

 

My son has severe autism, and my dd has ADHD although I have not sought the label for her, meaning she has no diagnosis. At this point, we do not need one. My son, however, oy! Let me start by saying that I do not want to medicate my kids. I give them liquid motrin for a fever, but that's about it. The thought of side effects scare me, the idea that doses need to be upped freak me out. That said, here is our story:

 

About 2 years ago, my son's "autism dr" suggested we put him on meds for his obsessions. I figured his obsessions (writing movie production companies, their movies, and copyright years) were just a part of autism, and pretty much scoffed at the idea. Fast forward a year (which was a year ago) and his obsession became quite clearly OCD, meaning, his obsession was controlling him. He simply had to write these movie company names repeatedly, for HOURS on end. He cried, it was no longer an activity he enjoyed. He was unable to function. He wouldn't eat. He would. not. stop. I admitted it was indeed OCD, not just regular autism, and I called the dr. We researched what the dr suggested (for anyone who is interested, he's on a pediatric version of Prozac, called Fluvoxamine or Fluvox) and the dosage he is on is so miniscule, like 2% the adult dosage. Let me tell you, this drug has given him a new start! Night and day! He now plays more, he plays the piano, his communication has improved, his interaction has improved, he is HAPPY! Yesterday he drew a page full of rainbows, with our family in the middle and hearts all around our heads. :001_wub: This drug has improved the quality of his life, and I am so thankful for it!

 

Now, having shared our story, I would encourage you to research your options, pray about it, and have a trial of the meds, 2 weeks or 2 mts, whatever the dr suggests. If it doesn't work, then stop taking them. That simple. :001_smile: You just never know if the benefits outweight the cons until you try.

 

:grouphug: hugs to you, I know this is difficult. :grouphug:

[Ibbygirl]

Jennifer, I have not read a single response, because I don't want to feel condemned or anything. I know exactly what it feels like to be where you are.

 

My son has severe autism, and my dd has ADHD although I have not sought the label for her, meaning she has no diagnosis. At this point, we do not need one. My son, however, oy! Let me start by saying that I do not want to medicate my kids. I give them liquid motrin for a fever, but that's about it. The thought of side effects scare me, the idea that doses need to be upped freak me out. That said, here is our story:

 

About 2 years ago, my son's "autism dr" suggested we put him on meds for his obsessions. I figured his obsessions (writing movie production companies, their movies, and copyright years) were just a part of autism, and pretty much scoffed at the idea. Fast forward a year (which was a year ago) and his obsession became quite clearly OCD, meaning, his obsession was controlling him. He simply had to write these movie company names repeatedly, for HOURS on end. He cried, it was no longer an activity he enjoyed. He was unable to function. He wouldn't eat. He would. not. stop. I admitted it was indeed OCD, not just regular autism, and I called the dr. We researched what the dr suggested (for anyone who is interested, he's on a pediatric version of Prozac, called Fluvoxamine or Fluvox) and the dosage he is on is so miniscule, like 2% the adult dosage. Let me tell you, this drug has given him a new start! Night and day! He now plays more, he plays the piano, his communication has improved, his interaction has improved, he is HAPPY! Yesterday he drew a page full of rainbows, with our family in the middle and hearts all around our heads. :001_wub: This drug has improved the quality of his life, and I am so thankful for it!

 

Now, having shared our story, I would encourage you to research your options, pray about it, and have a trial of the meds, 2 weeks or 2 mts, whatever the dr suggests. If it doesn't work, then stop taking them. That simple. :001_smile: You just never know if the benefits outweight the cons until you try.

 

:grouphug: hugs to you, I know this is difficult. :grouphug:

 

Thank you, Karyn, so much for your caring reply. Thank you for your openess to share your story with me. My daughter sounds alot like your son. She is compelled to do things and she cannot help it. I remember when she wanted to learn violin and I bought her a "real violin" not a toy one. I gave her a list of 7 rules that she absolutely had to follow if she wanted me to teach her the violin. She asked me if we could make it 10 rules instead of 7. I asked her, "Why 10 rules? 7 is less rules to follow." She answered, "because 10 is better." I asked her, "why is it better?" She answered, "it just is." I asked, "but why?? It's more rules." to which she burst out, "just make it 10!" hehe

 

I have to laugh about these things otherwise I would be crying. I feel so sorry for her. Her mind goes a mile a minute and she just cannot calm down. She fidgets constantly and she fixates on things and cannot let them go. I cannot imagine what it must be like to be her and to be driven by compulsions that way. I feel so sorry for her. I feel the same way about medications as you. I never like to give my kids anything if I can help it. Call me paranoid, but I don't exactly believe that the drug companies have my child's best interests in mind and after the Celebrex controversy, I have a pretty shaky confidence in the FDA as well. I know that these decisions are on my shoulders and it is hard to know what is best for my child. She and my son both are prisoners of their own minds and it's so painful to see them struggle and to not be able to help them out of it. It is so hard to know what to do. I am glad that the medication is working for your son. I will talk with the pediatrician about what's out there when I go in June for my daughter's annual check up. I may have to resort to meds at some point, but for now I have one more thing I will try first. I thank you so much for your encouragement and for your advice. These kids are so special and I feel the weight of the responsibility for their care very much so. It is so difficult to know if I am doing the right thing, the wrong thing, a good thing or a bad thing. I thank you and everyone else for their encouragement and kindness. It really is a comfort. I will keep you all updated in this thread as I work my way through this whole issue.

 

God bless you all and your wonderful, precious, special children. This is one heck of a journey to be sure, but it's an amazing one all the same.

 

Thank you all so much from the bottom of my heart. :grouphug:

 

Jennifer

[SkateLeft]

We researched what the dr suggested (for anyone who is interested, he's on a pediatric version of Prozac, called Fluvoxamine or Fluvox) and the dosage he is on is so miniscule, like 2% the adult dosage. Let me tell you, this drug has given him a new start!

 

I had a very similar experience! My son had also been diagnosed with severe autism, and was hospitalized because of insomnia that our neurologist suspected was caused by seizures. He was non-verbal, completely non-interactive and non-communicative. A 48 hour video monitored EEG revealed that he was actually having panic attacks all night long. (An MRI also revealed that he is missing a significant portion of the part of the brain responsible for language, emotion and memory. Instead, he has a large cyst in that spot that developed early on in gestation.)

 

As a last resort, our neurologist recommended we try Prozac (Fluvox). He said it would take about three weeks to begin to see results. At the end of those three weeks, over a three day period, my son suddenly seemed to come out of his shell. It was the most amazing thing! My husband came home from work, and my little guy ran up to him and said, "Daddy!" and my husband got all teary because prior to that, my son had never even looked at his dad before.

 

It was a really hard decision to make, mainly because it's just not socially acceptable and I struggled with that. But, I'm so glad now that we opted to try the medication. He's currently in a special education preschool program, and his teacher told me last week that he's one of the highest functioning kids in the class. :D

[Ibbygirl]

I had a very similar experience! My son had also been diagnosed with severe autism, and was hospitalized because of insomnia that our neurologist suspected was caused by seizures. He was non-verbal, completely non-interactive and non-communicative. A 48 hour video monitored EEG revealed that he was actually having panic attacks all night long. (An MRI also revealed that he is missing a significant portion of the part of the brain responsible for language, emotion and memory. Instead, he has a large cyst in that spot that developed early on in gestation.)

 

As a last resort, our neurologist recommended we try Prozac (Fluvox). He said it would take about three weeks to begin to see results. At the end of those three weeks, over a three day period, my son suddenly seemed to come out of his shell. It was the most amazing thing! My husband came home from work, and my little guy ran up to him and said, "Daddy!" and my husband got all teary because prior to that, my son had never even looked at his dad before.

 

It was a really hard decision to make, mainly because it's just not socially acceptable and I struggled with that. But, I'm so glad now that we opted to try the medication. He's currently in a special education preschool program, and his teacher told me last week that he's one of the highest functioning kids in the class. :D

 

 

Wow!! What an amazing story. My son still doesn't call me mommy. He just grabs me by the hand when he wants something and then takes me to the general area where the thing is and just waits for me to figure out what he wants. hehehe

 

I'm curious, what did the docs do about your son's cyst?? Did they operate or just leave it there.

 

Thanks so much for sharing your story.:) :grouphug:

[SkateLeft]

I'm curious, what did the docs do about your son's cyst?? Did they operate or just leave it there.

 

We just had a followup MRI two weeks ago to keep an eye on it. As long as it's stable, we're not going to operate. If it begins to put pressure on the surrounding brain tissue, we'll have to put a shunt in to drain the fluid. It's a backup of spinal fluid because of a narrowing of the ducts that normally drain it. So far, it looks like a balance has been achieved. Because it occurred so early in gestation, the brain that should be in that spot never developed. So even if we drain it now, there's nothing there to fill in the big hole. We'll just continue to watch it for the time being.

 

It's been interesting to watch his development, and realize that his little brain is wiring itself around the missing portion. We joke that when he gets older, he'll be able to say things like, "I can out think you with half my brain tied behind my back!" and he'll actually mean it. :)

[Ibbygirl]

It's been interesting to watch his development, and realize that his little brain is wiring itself around the missing portion. We joke that when he gets older, he'll be able to say things like, "I can out think you with half my brain tied behind my back!" and he'll actually mean it. :)

 

 

LOL :) That's great! :)