new here, 9 yr old, complicated | ADHD Information

Hello everyone,

I am feverntly searching the internet for any and all help right now. I have a 9 yr old, he has been diagnosed since age 2 so nothing is new, but i am again, at a loss. He is formally Dx with ADHD, OCD, Tourette's and PDD NOS. long sotry short, he is extremely smart, on grade level, high functioning, normal IQ, sweet, warm, nice, friendly, social. major impairments are emotional, emotionally immature, no frustration tolerance, easy to anger, aggressive at time (was extremely aggressive as a small child), and some social impairments understanding friendship and acting quirky or different. we live in FL and have had a HORRIBLE time with the schools. my poor son has been to so many different public schools we are so ready to give up, none have the right program, either its too strict, too lenient, too severe disabilities, too typical - in a reg ed class he needs too much help dealing with the other kids, in a class of disabilities he is unhappy because he cant make any friends, and on and on. he s TRULY a square peg. the worst of it is that he is constantly, despite having an IEP for 6 yrs nw in the same school district, he is getting kicked out and having to switch schools all the time for aggression! he has some good months where he wont have any incidents of aggression (hitting, slapping, kicking, even biting on the rare), or we will have months on end with an incident every other week like this school year! he is non adaptable - if the teacher isnt just right for him, he will behave poorly, if the kids are too mean he will go nutty, if he makes no friends he gets very angry, if he makes friends and that friend doesnt pay attention to him 100% of the time he will freak out. i wish he woudl just cry or scream or ask for help, but instead he hits and kicks! now mind you this child is very innocent, he is delayed in speech and not a bully, not a mean bone in his body, no lying or anything like that, but he is very emotional and very emotionally confused,he is pretty OCD, obssessive, over talkative, but more to this point, he refuses to talk about feelings, refuses to say he is angyr or sad, is unreceptive to this type of talk or help, and just says "i had no choice but to hit" "there was nothing else i could do", and i think thats true, his brain doesnt know what to do when he is upset! he goes from upset to explosive. now mind you we and the schools have tried to teach him about feelings, about alternate choices when youre upset, about being sad, about self control (which he clearly has little of poor thing) etc etc, we have tried. isee progress with his behavior at home, but at school he is a wreck when anything goes wrong!

the things is, a lot of problems are able to be helped, he is bright, etc, but its like aggression at this age is the killer! i am about to take him out of school! i have to pick him up every time this happens, im going to lose my job, what is a parent to do?! i have him on an all natural foods diet with minimal dairy and gluten, lots of vitamins, fish oil, etc. I myself am not a fan of meds so he is not on any and functions pretty well with no meds except for times like this with the aggression and explosions. where does a parent turn? if i homeschool then he looses all hope for any friends and social normality. i cant find a decent psychologist who can help, i dont know any other parents who have high functioning, smart child who can be aggressive! its so isolating, so i am checking here to see if any of you have any ideas? similar experience? anything??? thank you!

Having an autistic child with some ADHD tendencies myself, if you are truly wanting to eliminate some of the behaviors, you REALLY need to go COMPLETELY gluten and dairy-free. My son BLOSSOMED socially when we did and while he's certainly not age-appropriate, he's come a LONG way in the last almost 6months since we've been on the diet.

My son IS on Risperdal and it works REMARKABLY well on his aggression/mood swings (he could go from screaming, crying tantrumming mess to laughing manically within a few SECONDS!), especially now when in conjunction with the diet and supplements/vitamins.

I don't have any real suggestions... just commiseration. We had to medicate my son. He was getting to the point where because of his size, he posed a very real threat to myself and my younger son because of his aggression (the aggression was usually directed towards me).

Good luck!

Hi there cfa3!

I just wanted to post to you and send you a big hello. I read your post, not sure I have any advice but wanted to let you know how much we care.

The most upsetting thing to me is how our little ones struggle with friends. I truly think the schools can and should be doing more.

If your son has an IEP and they are not following it, then they are in violation. Do you have an advocate? You need to call a TEAM meeting and get the school on track.

I also believe, but strongly, that he CANNOT be kicked out! Again because he is on an IEP.

What is going on in your school system? They are NOT helping your child, nor anyone elses I suspect!!

Please let us know how we can help. I wish we lived close so that our children could play. Maybe others here on the board live nearby??? What state do you live in? I live in Massachusetts. People Private Message each other and it is only between the two of them.

Please let us know how he is doing and if you have found any help.

do you go to wrightslaw.com? they have a list of yellowpages for children where you can find help!! check it out!!

welcome!!

Also, have you tried any stimulants?

My son is now 11, but we started when he was shy of 7. They saved his life, truly. He is very ADHHHHHHHHHHHHHHHHHD and impulsive. He couldn't control it without help.

concerta has really helped him. He is a great student and plays sports.

He is shy/laid back, but is a great kid. Social isn't the greatest, but he is still fine. Has made more friends this year since entering middle school than when he was in elementary school. Just a good kid.

BUT, without his meds, he would be difficult and very immature.

Just wondering if there were any meds in use.

thanks!

Have you look into zinc and magnesium? I don't remember all the facts...I think sopper/zinc imbalance leads to aggression. And copper steals zinc??? I'll see if I can find a link. Magnesium has a great calming effect.

I'm assuming you've tried probiotics? We use s.boularddi and it really seems to help keep my son from having major ups/downs. I don't really understand why it works. His GI prescribed it to him for behavioral reactions to foods (mostly fruits/veggies) but we noticed that it also helped his mood swings. I guess it makes some sense that if things aren't processing well that it would effect your disposition...but beyond that I don't get it!

edited to add: http://www.ncbi.nlm.nih.gov/pubmed/9251975

now, please don't take offense to some of what it says...I don't mean to imply your son is a sociopath...but there is clear evidence that zinc deficiencies lead to more violent type behaviors...

My son takes a combo pill that includes zinc, D & magnesium. But I'm not 100% sure on the form of D, I need to look into that more...apparently low D is being targeted as a suspect in a whole host of learning disabilities. If I understand right, D3 is the one I want???

I haven't really introduced myself yet. My son is 6, in kindergarten, he was recently rediagnosed w/ ADHD with lingering PDD-NOS symptoms (rigid, trouble transitioning, difficulty with facial recognition and pragmatic communication). At about 2yo he met the criteria of autism, by 3 it was PDD-NOS...now at just about 6 he's ADHD with lingering PDD criterias. We are doing better & better with lots of diet modifications (fructose intolerant), supplements and therapes. He is EXTREMELY hyper and very easily distracted and FLIES off the handle when things don't go exactly the way he 'expects.' Whether that is a past experience or something he invisioned on his own. Also, he doesn't quite seem to understand that other people's feelings or wants should factor into things...this concerns me quite a bit!

He also takes Omega's 3, 6 & 9.

We stopped supplementing for a bit while he was being evaluated...I wanted to make sure we got the full picture, ya know. We have started back up again last week...so hopefully I'll get a clear picture of how much the supplements help too.

Hope this helps.

*KJ*39854.3082638889

no, youve actually been ALOT of help, making me realize that i cant dismiss the GFCF yet as ii never tried dairy free and probably didnt give the GF enough time, just assuming that because he is not typical autism with the issues of not bonding with others being present that the GF wouldnt help. Now i do want to try it again, cant be harder than what we;re going through now. AND i want to try the dairy free now too thanks to your messages. i know of gfcf.com i think but if youd like id love ot hear your other resources.

i need to think about the meds.... i have read alot and been told by people i TRUST that if you find the right supplements and vitamins and diet, that meds should be UNECCESARY, i,.e., the right natural treatments should minimize the aggression as well as meds would. thats what the whole DAN thing is about i thought. i am trying to get to a DAN doctor.i dont knwo about meds but i have to agree that this aggression and days of being non functional is killing us all and destroying his ability to stay in school. thank you SO much for your replies! the best to you.

p.s. he is already, if i didnt mention, on an all natural, no artificial anything diet

[QUOTE=asdkidsarecool]Hello again! :)

Honestly ... I think removing DAIRY was by far the best thing for my son, behaviorally. Gluten/Wheat stuffs were causing STOMACH problems (I'm thinking my son might be Celiac, but since he's been gluten/wheat free there's no way to test him LOL) but the dairy was causing a LOT of behavioral problems; and even now, I can tell when my son has had a dietary infraction as it comes out in behavioral issues. Luckily, he's been having a REALLY AWESOME streak at school and I couldn't be MORE proud of the results of the GFCF (and he's also free of other things as well like citrus, peanuts, very low amounts of soy, eggs and yeast). Gluten can actually stay in their systems for upwards to 6months (I think really, that 3months is the shortest amount of time that I'd try it before I gave up on it). I would say, see if you can get into a DAN! doctor (we have an appt with ours on Thurs... can't wait to see what the doctor says about the difference in behavior/demeanor since the last time we were there in Dec!) and see about getting some testing done. I've heard of lots of positive stories where ADHD kids have been helped with the diet as well, and especially when removing artificials, sugar, dyes, etc.

As far as the meds; that IS scary but you also can't have your son being aggressive. My son's developmental pediatrician has seen WONDEROUS things with Risperdal and other children..... it literally saved our family when my son started on it a few years ago. I'm by far, NO DOCTOR (and I don't play one on TV... ;)) but I would strongly suggest getting into a doctor/psychiatrist that YOU feel comfortable with and that will actually help your child. Your pediatrician sounds like he's at a loss for as how to help you.

As far as school; is there any way that the aggression is because he just doesn't feel like he fits in anywhere? They really need to stop dropping the ball and help your son fit into a placement where he can have structure and routine and not have to keep jumping from school to school, poor guy!

again, probably not much help ..... but just some commiseration! and, if you really want to contemplate going GFCF, I have a few resources available (email lists, etc....) that you might wnat to check out to see if they'd be of any help.

[/QUOTE]

thank you for replying to me! the things is, i hear the strict gluten free and casen free is only really applicable to "truly" autistic kids - i and others are not even convinced that my son is really PDD NOS, he is quirky and has social impairments, but that whole peice of lacking comprehension of things and being not present or removed from others is NOT my son at all. so i dont know....i havent consulted enough experts to know if a non autstic child with some autistic tendencies can be helped as much from GFCF....its so confusing. i had him on strict GF for about 2 months and thought i saw some improvement but nothing major like parents describe, he still had meltdowns, maybe i didnt do it long enough i dont know.

as for the meds, i had tried my son on Abilitfy and it messed him up SO badly i think it would take a gun to my head to get me to try him on any other major med, he became suicidal on abilify i kid you not, it was the worst time of our lives and this was when he was 8. i think maybe i have not found all the right vits and supplements for him, i still have hopes of taking him to a DAN" doctor if i can afford it, but his pediatrician likes to remind me that his problems are in the BRAIN, chemical and no vitamin is going to fix what the best psychiatrists on the planet cant fix, its a non fiaxable issue. i dont want him "fixed" i jsut dont know what to do about the aggression, even though its not at home and not in any setting except school, its horrible and making life so hard for my son im about to keep him home.

thank you, i will re consider the GFCF again, thank you for writing your reply to me, i really appreciate it!

[QUOTE=asdkidsarecool]Having an autistic child with some ADHD tendencies myself, if you are truly wanting to eliminate some of the behaviors, you REALLY need to go COMPLETELY gluten and dairy-free. My son BLOSSOMED socially when we did and while he's certainly not age-appropriate, he's come a LONG way in the last almost 6months since we've been on the diet.

My son IS on Risperdal and it works REMARKABLY well on his aggression/mood swings (he could go from screaming, crying tantrumming mess to laughing manically within a few SECONDS!), especially now when in conjunction with the diet and supplements/vitamins.

I don't have any real suggestions... just commiseration. We had to medicate my son. He was getting to the point where because of his size, he posed a very real threat to myself and my younger son because of his aggression (the aggression was usually directed towards me).

Good luck!
[/QUOTE]

Hello again! :)

Honestly ... I think removing DAIRY was by far the best thing for my son, behaviorally. Gluten/Wheat stuffs were causing STOMACH problems (I'm thinking my son might be Celiac, but since he's been gluten/wheat free there's no way to test him LOL) but the dairy was causing a LOT of behavioral problems; and even now, I can tell when my son has had a dietary infraction as it comes out in behavioral issues. Luckily, he's been having a REALLY AWESOME streak at school and I couldn't be MORE proud of the results of the GFCF (and he's also free of other things as well like citrus, peanuts, very low amounts of soy, eggs and yeast). Gluten can actually stay in their systems for upwards to 6months (I think really, that 3months is the shortest amount of time that I'd try it before I gave up on it). I would say, see if you can get into a DAN! doctor (we have an appt with ours on Thurs... can't wait to see what the doctor says about the difference in behavior/demeanor since the last time we were there in Dec!) and see about getting some testing done. I've heard of lots of positive stories where ADHD kids have been helped with the diet as well, and especially when removing artificials, sugar, dyes, etc.

As far as the meds; that IS scary but you also can't have your son being aggressive. My son's developmental pediatrician has seen WONDEROUS things with Risperdal and other children..... it literally saved our family when my son started on it a few years ago. I'm by far, NO DOCTOR (and I don't play one on TV... ;)) but I would strongly suggest getting into a doctor/psychiatrist that YOU feel comfortable with and that will actually help your child. Your pediatrician sounds like he's at a loss for as how to help you.

As far as school; is there any way that the aggression is because he just doesn't feel like he fits in anywhere? They really need to stop dropping the ball and help your son fit into a placement where he can have structure and routine and not have to keep jumping from school to school, poor guy!

again, probably not much help ..... but just some commiseration! and, if you really want to contemplate going GFCF, I have a few resources available (email lists, etc....) that you might wnat to check out to see if they'd be of any help.

KJ:

thank you for your reply! i am sorry i have not gotten back to this forum until now.

you are talking to the right person, i have been studying and reading about nutrition and supplementation for kids like ours for years now. I have tried several times to see a "DAN" doctor with my son but could onyl afford so much and gave up, though recently i feel a huge part of this puzzle beng solved involves going to a good DAN so i am going to try once again.

have not heard of the zinc issue! have heard lots on the magnesium, i started my son on a magnesium regimen of 250-500 mg a day, always on an empty stomach and a very specific formula of magensium. i THINK it calmed him down, either that or something did, and it MAY have also taken his tics away! he ticced horribly for about 2 years before the mag. ritual. we have not seen but 2-3 in a whole YEAR since we started the mag., so im not stopping it.

i must look into the zinc as his aggresion can be so perplexing and out of character. what makes me discouraged though is that he started displaying this aggressive bent at a young age, like 1 year old! could a child have a deficiency at that age? these are the kinds of things i want a DAN for.

yes my son is on probiotics, though i really dont know if the dosage is right or not. i do think it has helped with his ulcer and a million other of his stomach problems because he complains less of stomach pains, otherwise im not sure.

by the way, i will never take offese at any help anyone is trying to offer me! i know you are not intending to offend me or anyone, so pls dont think that. that article is extremely interesting to me. your sons diagnositic prognosis sounds exactly like my sons! my son though is not really hyper any more, but has ADHD/ADD symtpoms and like you say some mild on and off PDD NOS symtpoms. his anger though is problematic, as it makes him a "behavior case" at school when really he is just a sweet boy who, like you describe, just has no tolerance for things not happening as he envisions them. id love ot hear how he is doing and how your supplementation is coming, it would be nice if there was a section on these boards for all natural or supplementation treatments - i dont find that many forums that talk about that.

thank you for your reply! you gave me lots to think about.

[QUOTE=*KJ*]

edited to add: http://www.ncbi.nlm.nih.gov/pubmed/9251975

now, please don't take offense to some of what it says...I don't mean to imply your son is a sociopath...but there is clear evidence that zinc deficiencies lead to more violent type behaviors...

He also takes Omega's 3, 6 & 9.

Hope this helps.

[/QUOTE]

Bethann:

thank you! your posts were very kind! i too with that i was closer in region to other parents who understand and we could get our kids together and be a community. this forum has been great tho, even though my child is not strict ADHD and in fact is not very hyper at all. he gets "wild" at times, but he say sit still, he can sit without figdeting, he doesnt always jump all over the furniture any more, etc. When he comes to things he likes he can stay focused for HOURS on end. no, i have not tried stimulants. i feel very unsure about meds, although you and will find me to be the least judgmental person in that and about any respect. I believe that whatever works is whats right, period. maybe i will get my courage up and find good reasons to try some meds one of these days. the experience i (i should say my son) has had with them so far has been god awful to be honest. we tried 2 SSRI's and saw either no difference or my son just seemed wierd and far away, which if anything he is never "far away" or removed. then we tried an atypical antipsychotic Abilify and i will say that for a few maybe 2-3 months it APPEARED my son was doing better, seemed more together, not so all over the plce and dis-regulated inside, but after that it was a fast ride downhill all of a sudden, one day, he just lost it and became extremely violent, was talking about killing himself and dying (had NEVER heard anything like that from him) and became severaly depressed and unable to sleep for months, even months after we took im off it. finally, he got back to his "normal" or old self. As for stimulants therefore, i dont really know that he would need them for the kind of ADHD symtpoms they are prescribed for. he has an IEP and is covered under IDEA and although the schools are crappy he gets by in terms of focusing and completing his school work. so im not sure. but it, like many other things, is always something to keep in mind. My concerns are with the occassional aggression, inflexibility, and ups and downs he displays like with self regulation, mood and emotions. Like you said, mine is very immature and very just "difficult", like spending a day with hm is exhausting even though he is not that hyper and is a nice and kind boy.

i dont know, i need to really re think meds and what my game plan is as he is becoming such a "behavior case" in each school and that is just hard to watch anddeal with and solve. thank you for your kindness and trying to help me!

[QUOTE=BETHANN]

Also, have you tried any stimulants?

My son is now 11, but we started when he was shy of 7. They saved his life, truly. He is very ADHHHHHHHHHHHHHHHHHD and impulsive. He couldn't control it without help.

concerta has really helped him. He is a great student and plays sports.

BUT, without his meds, he would be difficult and very immature.

Just wondering if there were any meds in use.

thanks!

[/QUOTE] Just wanted to jump in - my son was not medicated for 2.5 years. Then
he tanked academically, and we started him on medication.

It is working to help him focus and with his schoolwork, but what I keep
hearing from the school is how much progress he's made socially. I had
heard it from other parents, but I never would have believed it until I saw
it myself.

I believe more and more (and I'm becoming a broken record about it -
sorry!) that negative behaviors of kids with ADHD are caused by their
frustrations. Get rid of their frustration, you will get rid of their negative
behaviors, including doing things that drive their friends away.

I am all for trying environmental changes first - like I said, my son was
non-medicated for 2.5 years. And I always said that when he needed
meds he would have his meds. It was still insanely difficult to do it - but
now I am so glad I did.

While you are researching alternative treatments, research medications.
Learn about them in case the alternatives don't work or stop working.
Take this time to familiarize yourself with them so it's not a horrible
shock if your son does need them.

Remember, if a doctor prescribes a medication it's because your child
needs it. Keep the best interest of your child in mind. It isn't a game of
"I'm the best parent because my kid isn't on meds." Do everything you
can to make his life the best it can possibly be.

Best of luck to you.