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Treysmommy2010 profile image
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Hey new to the group with lots of questions! Ok so my almost 8 year old was diagnosed with ADHD and odd when he was 4 . Although we knew way before. Anyways since the age of 4 he has been on Adderall xr. He is now up to 30 mgs a day and the doctor has decided to add guaficine which is a blood pressure meds that has been known to help children with ADHD. He hasn't taken his first dose cause I'm afraid it may be to much meds for his tiny self. He used to be 99 percentile for height and chunky.. now he is in the 45 percentile and very skinny! He never eats. And has no want to participate in any activities. He's withdrawn..and has a very hard time interacting with others..smart as heck. But this year has started doing awful in school. Knows the material but just leaves it blank. What meds worked best for your children? I don't know what to do anymore.i feel like a horrible parent for making him take this medication that makes him fill so withdrawn

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Treysmommy2010
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12 Replies
DecaturDAD profile image
DecaturDAD

My son is 14 now, but was diagnosed at 6. Adderall did not work for him; in fact, I believe that's the one he had the most trouble with. After much experimenting, we wound up with Methylphenidate Extended Release, which has been much better. If one med isn't working, don't hesitate to talk with your Dr about changing. The trials can be taxing, but finding the right one, or the right cocktail, is worth it.

Mommabear08 profile image
Mommabear08 in reply to DecaturDAD

My son was diagnosed with ODD at 4 and ADHD at 6 he takes 15 mg Adderall xr a day and a medication called kapvay Wich lowers his BP And helps him be less agitated and other stuff to do with the ODD he's 9 now he's pretty good sized 4'7" & 104 lbs but he was smaller when I first started and as he grew we upped the meds they work great for him both are xr though

MomOf2WithA profile image
MomOf2WithA

My 2 take Vyvanse 30mg. It works a lot better than the medadate they were on.

123K profile image
123K

I totally know how you feel.i did not want to put my son on medication, but this methylphenidate er has helped my son focus, and calm down. The school has noticed when he has not had his meds. So far it had been good. Some children need medicine to function and be successful.

Lostmama profile image
Lostmama

You may need to experiment different meds or try to stop the meds all together. Some kids are able to handle their symptoms when they get older, just try it for atleast a day or two. My son is 6 and is on Ritalin 10mg 2x/day. It only stays in his system for a couple hours, which I notice that's when his appetite is suppressed. On the weekends he doesn't take it all which allows him to have his normal appetite. You have to give him some kind of balance.

555jms profile image
555jms

I feel for you. My son is almost 7 and in my experience medication did not work. And the trade off of losing our son’ s shining qualities, appetite etc... was not worth.

We have had the most success with a private OT, to learn about feeding his sensory diet, a chiropractor who works with the nervous system for kids with ADHD. A naturopath to work with him internally. We even take him for deep shiatsu massage. He sometime falls asleep drooling on the table. It’s WAY more work for me and the pay off is I still have my lively child.

It took me a long time to fully understand/educate and come to terms with the type of kid I created. I am his mother but most importantly I am his fierce advocate. I find out what works best for him and then I ask his school to implement it. I am his IEP. I work very closely with them, mama bear with no apologies. I ask them to pick their battles with him and honour his being as a whole. I send them information to assist them. I ask them to work together with me.

If he doesn’t want to sit at carpet time but instead wants to stand at the back then let him. If he wants to do his work standing instead of sitting, let him. if he needs to chew gum for his oral sensory that soothes him, let him. If he is frustrated or having a melt down, validate his feelings with a loving smile and offer him a hug. If he wants to negotiate, let him but do it with intelligence and love. My son’s brain needs to negotiate.

Like your son mine is also a smarty pants and like most children with ADHD. I have learnt that the things he does and are deemed as a “problem” are actually him attempting to self medicate. Our children don’t want to be “bad or distributive” they simply can’t help it. They do these things to find balance to help their brains. They do this for dopamine hits and we can help them get those hits by working with them and teaching them how to self regulate with safety and while respecting others. I have learned that I can not parent my son like other kids or expect him to be like other kids because he is not. And that is 100 percent ok.

I recently signed him up in the international inter school program “Oddesyy of the Mind.” Our kids thirst for creative and critical thinking because their brains move like a ferrari with bicycle brakes. My son needs to think out of the box and express himself freely with the absence of jujdement. My job is to find those platforms for him.

We have also had great results with heavy weighted physical work/activities that are very important for their bodies. Ninja training gyms, wrestling and boxing with a bag.

Group sports and disciplined martial arts forget it, not for my son, not right now. A complete gong show that just made him feel bad about himself because he could not be like the others.

In the last year I saw that my highly intelligent son was losing his self esteem, not trying anymore at school and giving up on himself. This was a major red flag for me.

For me, I had to come to terms with what I wanted and what my son really needed. I ended up leaving my career and work from home.

It’s still a long painful road with shimmers of hope along the way. Every child with ADHD is unique. I had to inform myself and try other ways in a world that’ offers fast results and quick fixes.

In my experice meds are not the end all. They can be a complimentary tool or a disaster. I have two friend’s who have their boys on stims. One is doing so so and the other not so well.

My kid has kicked me in the heart but also woken me up to a greater purpose in life.

I wish you much patience, perseverance and success with your beautiful boy.

Akmomof2 profile image
Akmomof2 in reply to 555jms

Thank you so much for this post! I am right there with my 9 yr old son and to say i am struggleing would do no justice to how i feel. I have tried meds, and discarded them. I hate to have him take them and fear for his long term well being. Recently the social awkwardness and oddities are really shining. I love my guy so much and hate myself for getting annoyed. Ugggg! I feel so very alone, judged and like nobody understands. He struggles but i cant tell how much is adhd and how much is my boy just trying to get a pass on life with defience.

Adhs profile image
Adhs in reply to 555jms

Hi, thank you for your inspiring comment! You seem to work closely with the school- i feel my school is very intransparent about how my 8 year old is behaving and performing. Does anybody know if I as a parent can request to see mu child‘s in class work to see if she is participating a all?

Thank you

555jms profile image
555jms in reply to Adhs

Hi,

In my opinion and experience, a teacher should let you know immediately if there are any issues in the class room. And the type of issues, academic or behavioural etc. Waiting until a report card is counter effective.

I always walk my son to his class and pick him up outside his classroom door. Sometimes I hang out and watch outside of the room at the edge of the door.

Most schools do not want parents in the class because of how the child may behave knowing you are there. Also out of respect for the other children.

If you have a private OT/ phycologist they can go in and observe on your behalf.

I learned that when I do the work first, assess, research and apply the best tools for my boy. I immediately present them to the school. Weather it’s an email to his teacher, I cc the principal and student services.

I often call for meetings with everyone present.

They see how involved I am and my presence is know. At times I feel like I’m educating them. It really takes a team :) They are well aware that I won’t let them off the hook for anything.

You have to be the best advocate for your your child, never take no for an answer and always be proactive. I live in Canada and I looked into my rights with the public school system here. I’m not sure where you live but gather all the facts you can.

I learnt that there is no system that will help or “fix” my child if I am not there working along side them. When they see how hard you are working for your child, it encourages them to work equally as hard. And when we achieve positive outcomes it makes everyone feels good.

❤️

ndschoening profile image
ndschoening in reply to 555jms

Very well said!!! I have always been an advocate for the meds but this week has opened my eyes to the dangers of taking them. My child will not take them again as I believe they have caused her to have a heart murmur. To all out there - RESEARCH THE MEDS!! It is really necessary to know what you are putting in your child's body. Stay in contact with all teachers etc. Good luck to you all.

Treysmommy2010 profile image
Treysmommy2010 in reply to ndschoening

My son was born with his heart murmur..and my daughter. It had nothing to do with the meds .just to clarify. But stimulants are dangerous for children with them and can cause sudden death

1stepAtATime profile image
1stepAtATime

Well with the guanficine my son has been on for almost 2 years,he was below weight and that helped him tremendously it should be at night to start makes him sleepy,mines takes 5mg of aderral xr now started 4days ago and 1mg of guanfacine at night good luck and no side effects with the guafacine he outgrew the medication unfortunately his old dose was 1mg of guanfacine in the morning and 1st at night

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