natural vs medication for ADHD ?update in post ?

ahk00

Hi all,
I have an 11 year old adopted son who has been diagnosed w/ ADHD for 5 years. A little bit of a back story: he was born @ 26 weeks, was not fed properly by his parents, had a feeding tube, multiple other health issues & was 11 pounds @ the age of 1. Needless to say he has developmental delays but received ST, OT & PT & is catching up. He was held back in K.

Prior to me taking him to have him diagnosed we did behavior charts, counseling & various other things. I wanted to make sure this was truly what was wrong and just not an issue because of the developmental delays. He has been taking stimulant medications for the duration of his dx. When these meds stopped working he would exhibit obsessive compulsive symptoms as well as when the medications were increased. So each time I switched to a new med. He has been on the current med for quite some time but during an IEP meeting was told that he is having to be redirected 22 times in a 25 min time period. Off to the dr we go & the dosage is increased. 1 week in no change. Week 2 he was doing great. Week 3 he was getting in trouble @ school because of the obsessive compulsive behaviors. Isaiah does not get in trouble @ school. I was getting worried as they were becoming worse @ home. I honestly thought maybe he was misdiagnosed & didn't have ADHD @ all but had OCD. Spring break here we come! So off the medications he goes & ALL obsessive compulsive behaviors are gone. He is eating more, having daily BMs (previously he would go days w/o having one), drinking a ton more (typically its like pulling teeth to get him to drink 3x a day) & hyperactivity I would say is mild but not off the chart like the last time I tried this but he is exhausted.

He has been going to acupuncture with me weekly since Thanksgiving & about 15 days ago I started him on an herbal supplement. For a long time now he has been taking the following supplements: fish oil, D3, probiotic & a multi-vitamin. He also takes daily allergy & asthma medications. I have tried diet elimination & the only thing that has helped somewhat is eliminating red food dyes.

We had a med check appointment today & the Dr says "I am amazed that the obsessive compulsive behaviors are gone". She is no longer recommending stimulants for him but is not sure what to do now. She did recommend continuing with the herbs & acupuncture. She did give me a different med @ the lowest does in the event that I need something for school. She has also recommended a psychiatrist. Which I don't like. As a Social worker I have seen a million times: kids go in for one thing & end up on multiple meds to lessen the side effects of the other meds. I do not want to do that. She suggested sending him to school on Monday w/o the meds & w/o telling the school to see if they notice a difference w/o being told. My fear & the dr's is that if they know they will be looking for things to be wrong. I worry because on April 5th he has a 2 hr test at school. He does get pulled out & is with 3 other students during test taking & has the option for a scribe as well as someone to read him the questions. We also discussed non-stimulants but the lowering of the BP & suicidal ideations worry me. And I'm not 100% sure Isaiah would be able to communicate those thoughts with me.

So I guess my question is if anyone has any additional recommendations or herbal supplements that work for them or their little one I would greatly appreciate the advice. Should I go back to trying to eliminate things from his diet since he is off the meds? I am a little (ok a lot) lost.

Amanda

RedHeather

My sister gives my nephew coffee every morning, and she says it helps him focus on schoolwork (she homeschools). But if prescription stimulants were triggering OCD symptoms in your son, chances are caffeine would too.

Personally, based on what you've described, I'd let him do a week of school on the current regimen and see how it goes before changing anything. Chances are he is never going to be 100% symptom-free, and he's old enough that he may be able to start learning coping skills for the residual symptoms (though I realize his maturity level may be a bit behind his chronological age).

I have ADHD (primarily inattentive type), and I can't do stimulants because of cardiac side-effects (had to give up caffeine because of episodes of arrhythmia). I tried Strattera at one point, but it caused my blood pressure and pulse rate to go up (apparently the body processes it as a salt). We tried reducing the dose, but then that reduced the effectiveness, so I just gave up on it (doc offered to give me a beta blocker, but I didn't want to go down that road). I still REALLY struggled with grad school, and there's no way I could ever do a Ph.D. program, but thanks to the coping skills I developed while I was in college, my coworkers and supervisors now are impressed by how organized I am.

Some things that help me are checklists, having a set order that I do things in every day, keeping all my appointments (work and personal) on one calendar, and being sure to get enough sleep (fortunately my baby is usually a good sleeper).

K&H

If not a psychiatrist, who was prescribing? What you need is a good psychiatrist who helps you feel comfortable and that you guys are a team for him.
I can't tell you what to do in the meantime, but maybe ask around and see if there are good people near you. Don't let fear of bad doctors make you fear all doctors. You are the mom, you are the expert. A good doctor will recognize that.

ahk00

RedHeather thank you for sharing. I have had people tell me to try caffeine as well. It's not a good mix for him. The one thing I am having a hard time with is how tired he looks (mom said he looks drunk). He keeps telling me he feels fine. We have a routine and activities get timed. He typically get a minimum of 10 hrs of sleep. I wonder if that is too much?

RedHeather wrote:

My sister gives my nephew coffee every morning, and she says it helps him focus on schoolwork (she homeschools). But if prescription stimulants were triggering OCD symptoms in your son, chances are caffeine would too.

Personally, based on what you've described, I'd let him do a week of school on the current regimen and see how it goes before changing anything. Chances are he is never going to be 100% symptom-free, and he's old enough that he may be able to start learning coping skills for the residual symptoms (though I realize his maturity level may be a bit behind his chronological age).

I have ADHD (primarily inattentive type), and I can't do stimulants because of cardiac side-effects (had to give up caffeine because of episodes of arrhythmia). I tried Strattera at one point, but it caused my blood pressure and pulse rate to go up (apparently the body processes it as a salt). We tried reducing the dose, but then that reduced the effectiveness, so I just gave up on it (doc offered to give me a beta blocker, but I didn't want to go down that road). I still REALLY struggled with grad school, and there's no way I could ever do a Ph.D. program, but thanks to the coping skills I developed while I was in college, my coworkers and supervisors now are impressed by how organized I am.

Some things that help me are checklists, having a set order that I do things in every day, keeping all my appointments (work and personal) on one calendar, and being sure to get enough sleep (fortunately my baby is usually a good sleeper).

ahk00

K&H his pediatrician has been monitoring him. I agree that I need to find that one I'm comfortablewith. It's going to take some work on my part as my 15 years of SW has shown me nothing more than pill pushers.

K&H wrote:

If not a psychiatrist, who was prescribing? What you need is a good psychiatrist who helps you feel comfortable and that you guys are a team for him.
I can't tell you what to do in the meantime, but maybe ask around and see if there are good people near you. Don't let fear of bad doctors make you fear all doctors. You are the mom, you are the expert. A good doctor will recognize that.

RedHeather

I wonder if the tiredness could be withdrawal. If so, it should go away soon.

ahk00

I am thinking it is from withdrawl. I just wonder how long it will last and if there is anything I can do to help? He's been off 4 days now.

momsquared

We follow the Feingold Diet, use probiotics and omega 3. Results have been nothing less than amazing. We are also dealing with dyslexia on top of it all so that adds an extra twist but she is a completely different child than she was before these changes.

michgirl

We just got J2's test results back today. He has been diagnosed with OCD, ADHD, and dyslexia. Definitely looking into all of these options. Mom squared are you using any program for H's dyslexia??

momsquared

michgirl wrote:

We just got J2's test results back today. He has been diagnosed with OCD, ADHD, and dyslexia. Definitely looking into all of these options. Mom squared are you using any program for H's dyslexia??

We just had an IEP meeting before spring break. She is supposed to start Wilson 3 x a week at school when we go back Monday. I am looking for a tutor out of school as well but haven't had much luck yet.

old mama

I have been dealing with this for over 20 years with four children. It will be a matter of finding what works for him and believe me just because it works for a while doesn't mean it's the final cure. It seems to be a process. I too think children react to diet and environment (like school, daycare ect) My boys were on meds but it seemed we slowly kept increasing until they were maxed out. I am sure you are already doing this but strict routine, early bedtime, preparing them for changes in the routine, talking about expected behaviors, not being afraid to pick up and leave if they are misbehaving...they all help a bit. Whatever you do help them understand each and everyday how important the meds ect. is to them. I have three of my children who are now adults...all three went off meds...they can't hold a job, two dropped out of college, they have huge problems with relationships...the problems don't end when they turn adults. If you haven't already apply for SSI...I never thought with their intellectual abilities they would need it in fact one of the children is extremely gifted but they can't pay the rent or buy food if they can't focus and hold down a job. If you aren't getting it now he would easily qualify for some respite care. It is important that you have a break once in a while and take care of you. It's a tough job we have.

blkbrd3

it sounds like you're doing the best you can. I have one suggestion for you to consider. Do you have any concerns about his ability to sleep soundly and throughout the night? Some of the reading I've done on sleep apnea in children suggest that children with disturbances may often display symptoms during the day which are similar to ADHD, OCD, and/ anxiety. The daytime symptoms decreased significantly when sleep quality improved.

I don't know if this is a piece of your son's puzzle, but it might be worth thinking about.

ahk00

I will look this up. Thank you for sharing.

momsquared wrote:

We follow the Feingold Diet, use probiotics and omega 3. Results have been nothing less than amazing. We are also dealing with dyslexia on top of it all so that adds an extra twist but she is a completely different child than she was before these changes.

ahk00

8:30 bedtime with a 6:45 wake up on school days. On Tthe weekends he stays up until 10 at the latest & doesn't wake up until 9:30/10. He definitely reacts to environment. My sister has 4 children so when the 10 of us are together he usually has a hard time even on the meds. We take timeouts from situations that over stimulate but just the 2 of us removing ourselves from the situation. He was receiving SSI but I decided not to collect anymore because it was only 200 and felt someone else could use it because I get adoption assistance for him until 21. I get my respite when I work my one weekend a month at the hospital ☺

old mama wrote:

I have been dealing with this for over 20 years with four children. It will be a matter of finding what works for him and believe me just because it works for a while doesn't mean it's the final cure. It seems to be a process. I too think children react to diet and environment (like school, daycare ect) My boys were on meds but it seemed we slowly kept increasing until they were maxed out. I am sure you are already doing this but strict routine, early bedtime, preparing them for changes in the routine, talking about expected behaviors, not being afraid to pick up and leave if they are misbehaving...they all help a bit. Whatever you do help them understand each and everyday how important the meds ect. is to them. I have three of my children who are now adults...all three went off meds...they can't hold a job, two dropped out of college, they have huge problems with relationships...the problems don't end when they turn adults. If you haven't already apply for SSI...I never thought with their intellectual abilities they would need it in fact one of the children is extremely gifted but they can't pay the rent or buy food if they can't focus and hold down a job. If you aren't getting it now he would easily qualify for some respite care. It is important that you have a break once in a while and take care of you. It's a tough job we have.

ahk00

Thank you. No sleep concerns. He is a very sound sleeper. I tracked his sleep with my fit bit and he has minimal restlessness and no periods of being awake. Ocassionally he will wet the bed because he doesn't wake up to go to the bathroom. Through this journey I have found that is partly due to his irregular bowel movements as when you lay down the stool pushes on the bladder.

blkbrd3 wrote:

it sounds like you're doing the best you can. I have one suggestion for you to consider. Do you have any concerns about his ability to sleep soundly and throughout the night? Some of the reading I've done on sleep apnea in children suggest that children with disturbances may often display symptoms during the day which are similar to ADHD, OCD, and/ anxiety. The daytime symptoms decreased significantly when sleep quality improved.

I don't know if this is a piece of your son's puzzle, but it might be worth thinking about.

ahk00

Just an update: today he had to stay with my parents because I had an all day meeting. He didn't do so well mid afternoon. He was with 2 of his cousins, one of which has ADD. But once he got back home he settled down. Some positives that mom pointed out: his personality is back, he cried when he got separated at lunch for misbehaving (on the meds he would either continue to act up or smirk at you while in trouble), he was actually laughing and having fun with my mom instead of being his serious stiff shirted person he has become on the meds. He apologized for misbehaving and truly felt bad and didn't just say sorry because it was the right thing to do. Yesterday he was outside playing with his friends. He actually played with and spoke to 2 older boys that are new to the neighborhood. Normally he would ignore them and play by himself. He was so excited when he came in for dinner that he told me all about the things they did. Normally i have to pull stuff out of him and then all i usually get is the standard "I don't know" or yes or no ma'am. All of the above things are how I remember Isaiah being before placed on meds.

I know the stimulants are now doing him more harm than good. I just hope I can find something that works for him so he can focus at school and other places he may need as well. The other thing the meds have done is slowed his growth down. He has been at 54 pounds and 4 foot for over a year now. His bio parents are 6'6 and 5'8. He is being followed by an endocrinologist and GI. All medical possibilities have been ruled out. Per his growth chart he started slowing down after he started the meds. I'm going to look at the fingold diet as well. I'm sort of damned if I do and damned if I don't.

I truly appreciate the experiences and recommendations. If anyone can see anything that I'm doing that I should be doing differently I'm open to suggestions.

momsquared

ahk00 wrote:

Just an update: today he had to stay with my parents because I had an all day meeting. He didn't do so well mid afternoon. He was with 2 of his cousins, one of which has ADD. But once he got back home he settled down. Some positives that mom pointed out: his personality is back, he cried when he got separated at lunch for misbehaving (on the meds he would either continue to act up or smirk at you while in trouble), he was actually laughing and having fun with my mom instead of being his serious stiff shirted person he has become on the meds. He apologized for misbehaving and truly felt bad and didn't just say sorry because it was the right thing to do. Yesterday he was outside playing with his friends. He actually played with and spoke to 2 older boys that are new to the neighborhood. Normally he would ignore them and play by himself. He was so excited when he came in for dinner that he told me all about the things they did. Normally i have to pull stuff out of him and then all i usually get is the standard "I don't know" or yes or no ma'am. All of the above things are how I remember Isaiah being before placed on meds.

I know the stimulants are now doing him more harm than good. I just hope I can find something that works for him so he can focus at school and other places he may need as well. The other thing the meds have done is slowed his growth down. He has been at 54 pounds and 4 foot for over a year now. His bio parents are 6'6 and 5'8. He is being followed by an endocrinologist and GI. All medical possibilities have been ruled out. Per his growth chart he started slowing down after he started the meds. I'm going to look at the fingold diet as well. I'm sort of damned if I do and damned if I don't.

I truly appreciate the experiences and recommendations. If anyone can see anything that I'm doing that I should be doing differently I'm open to suggestions.

https://www.facebook.com/groups/19355996898/
Lots of info here and helpful people. There are a few NW folks who follow also follow Feingold. We are here to help with any questions you might have.

old mama

One thing to think about as he get older unless thing improve significantly is that it is difficult for an adult to get on SSI. Having him on it as a child even if it is a small amt. will help him transition later into the adult program. I never in a million years despite the fact I was dealing with FAS and ADHD with my adopted son would have thought he would so desperately need it as an adult. Also if he even qualifies for a little SSI he can qualify for Medicaid which he may have now as an special needs adopted child but once he turns 18 he is off. My son is normal intellectually so it isn't lack of ability there but not being able to focus and control his feelings and behaviors has cost him 5 jobs so far and Mama can't be there to fix all his problems even though he is still dependent on me. Respite while you work isn't much respite. I understand why as a single mom you need to do that but somehow find some time for you.

ahk00

Thank you. I requested to be added to the group. I also purchased the book on amazon.

momsquared wrote:

ahk00 wrote:

Just an update: today he had to stay with my parents because I had an all day meeting. He didn't do so well mid afternoon. He was with 2 of his cousins, one of which has ADD. But once he got back home he settled down. Some positives that mom pointed out: his personality is back, he cried when he got separated at lunch for misbehaving (on the meds he would either continue to act up or smirk at you while in trouble), he was actually laughing and having fun with my mom instead of being his serious stiff shirted person he has become on the meds. He apologized for misbehaving and truly felt bad and didn't just say sorry because it was the right thing to do. Yesterday he was outside playing with his friends. He actually played with and spoke to 2 older boys that are new to the neighborhood. Normally he would ignore them and play by himself. He was so excited when he came in for dinner that he told me all about the things they did. Normally i have to pull stuff out of him and then all i usually get is the standard "I don't know" or yes or no ma'am. All of the above things are how I remember Isaiah being before placed on meds.

I know the stimulants are now doing him more harm than good. I just hope I can find something that works for him so he can focus at school and other places he may need as well. The other thing the meds have done is slowed his growth down. He has been at 54 pounds and 4 foot for over a year now. His bio parents are 6'6 and 5'8. He is being followed by an endocrinologist and GI. All medical possibilities have been ruled out. Per his growth chart he started slowing down after he started the meds. I'm going to look at the fingold diet as well. I'm sort of damned if I do and damned if I don't.

I truly appreciate the experiences and recommendations. If anyone can see anything that I'm doing that I should be doing differently I'm open to suggestions.

https://www.facebook.com/groups/19355996898/
Lots of info here and helpful people. There are a few NW folks who follow also follow Feingold. We are here to help with any questions you might have.

ahk00

Thank you. I will keep this in mind. My FT job I work from home & get my work done the first 3-4 business days of every month. So the remainder of the month is very laid back.

old mama wrote:

One thing to think about as he get older unless thing improve significantly is that it is difficult for an adult to get on SSI. Having him on it as a child even if it is a small amt. will help him transition later into the adult program. I never in a million years despite the fact I was dealing with FAS and ADHD with my adopted son would have thought he would so desperately need it as an adult. Also if he even qualifies for a little SSI he can qualify for Medicaid which he may have now as an special needs adopted child but once he turns 18 he is off. My son is normal intellectually so it isn't lack of ability there but not being able to focus and control his feelings and behaviors has cost him 5 jobs so far and Mama can't be there to fix all his problems even though he is still dependent on me. Respite while you work isn't much respite. I understand why as a single mom you need to do that but somehow find some time for you.

Mommy2016

My 18 year old was on ADHD medication from the time she was 4 (long before she came to live with me.) I felt like I was always encouraged to keep her on it and while she did well at school, she really struggled at home. I was told it was because the meds were wearing off and to give her more, but I made the decision that as long as she was doing well at school, that I would handle the outbursts at home.

When she was 15, she tried to commit suicide. In the mental hospital, they determined that her long-use of concerta had caused damage to her brain and that it was making her suicidal. We went off all meds at that point, and started therapy once a week. It was a very rough start, but after two months, she was a different kid.

The last 3 years have been so much better for her. She still has her moments, but she is graduating in 6 weeks, has a job, and has been accepted to nursing school. I'm so proud of her and honestly, I don't know that I could ever put any future children on those meds. I know every kid is different, and Ive seen amazing results with students, but it isn't for everyone. You have to make the decision that is best for you and your child. It is such a hard one when you know they are struggling and you just want something to work.

ahk00

I am very sorry to hear that. But I am glad she is doing well now. Did you have her on any all natural supplements or just counseling? He is still tired but doing pretty good. Although he had a difficult time at home depot and dairy queen with my parents while I was working.

But the best feeling of all: a family friend at a party we were at said "normally Isaiah just sits and is very quiet. Tonight he is interacting and playing with the other kids like he is supposed to". I hate to say this because the thought of him losing himself along the way is hard but I have my Isaiah back. It's so good to see him participating in shows that his cousins put on and acting like an 11 year old.

Mommy2016 wrote:

My 18 year old was on ADHD medication from the time she was 4 (long before she came to live with me.) I felt like I was always encouraged to keep her on it and while she did well at school, she really struggled at home. I was told it was because the meds were wearing off and to give her more, but I made the decision that as long as she was doing well at school, that I would handle the outbursts at home.

When she was 15, she tried to commit suicide. In the mental hospital, they determined that her long-use of concerta had caused damage to her brain and that it was making her suicidal. We went off all meds at that point, and started therapy once a week. It was a very rough start, but after two months, she was a different kid.

The last 3 years have been so much better for her. She still has her moments, but she is graduating in 6 weeks, has a job, and has been accepted to nursing school. I'm so proud of her and honestly, I don't know that I could ever put any future children on those meds. I know every kid is different, and Ive seen amazing results with students, but it isn't for everyone. You have to make the decision that is best for you and your child. It is such a hard one when you know they are struggling and you just want something to work.

Mommy2016

We didn't do any supplements or anything, because she really wanted to stop all pills. We did change our diet quite a bit (organic and fresh foods mostly.) It seemed to help, though she still gained weight going off the meds and that was hard for her.

The thing is, once she was off the meds, she made friends, became social, and really changed personality-wise for the better. She had been so quiet and shy, unable to speak up in a group, and now she is full of sparkle and life. She's opinionated (maybe a bit too much) and shares things with me that she never did before.

Good luck!