Please tell me your ADHD story

august06mom · September 2012

DS1 had his well check today, and after talking with the pedi, he pretty much confirmed what I've always somewhat suspected -- he thinks DS probably has ADHD. He referred us to a behavioral pedi, but warned it would take a while to get an appointment. I know this is going to be a long process, and I would love to hear stories of how other people have gone through it and what's going on for them now.

It was kind of a relief, but I'm also very worried for what will come next. We do a lot of behavior modification with him now, and while it does help a LOT, I have a feeling that medication may be required.

light52 · September 2012

DS1 was diagnosed ADHD just after his 5th birthday. About six months later we finally received a full evaluation and wound up with ADHD/ODD/speech delay/learning delay. This summer we added hearing loss to the list and his speech therapist is going to test him for apraxia at his next screening.

We aren't fans of medication but opted to give it to him as soon as we had the initial diagnosis. We had been searching high and low for answers for him for years and most medical professionals just brushed us off as first time parents who didn't know how to handle their boy. A few really good therapists helped us realize it wasn't us though, taught us some behavior modification techniques, and helped us search for the right doctor for us. I don't regret for a minute giving him medication as it has made life so much easier for all of us. We still have many, many issues to work through but at least things are a bit more calm at home.

That being said, we don't rely on medication alone. We also have him in speech/OT/PT/behavior therapy. It is a lot of work to keep up with the therapy but it is worth it. Since we began the intense therapy a year ago I've seen a ton of improvement. I also enjoy having the support system from his therapists. I know I'm not going this journey alone and they are there to give me ideas on how to help him and to remind me I'm doing the best I can.

Good luck on your journey and feel free to PM me to chat about it.

august06mom · September 2012

Thank you so much for sharing. Would you mind explaining the ODD a bit more? These concerns have also come up for DS. Did you find that medication helped with those symptoms?

Sawyerplus1 · September 2012

Ok, I need to qualify this by saying that my son hasn't been officially diagnosed with ADHD yet and that the science/research behind this 'treatment' has been unconfirmed (but there's lots of anecdotal evidence).

DS1s pedi recently told us he would bet a ton of money on DS having ADHD, but we're currently doing some other screenings and referrals. But we started DS1 on a gluten free diet almost right and saw a difference in his behavior within 3 days. It's been almost 3 weeks now and we're still noticing a difference. He still has his 'days' and is still full of energy, but he seems a lot more stable. Less fidgety and more able to cope with things. Even his teacher noticed a difference. Perhaps worth a try for you before turning to meds?

light52 · September 2012

august06mom:
Thank you so much for sharing. Would you mind explaining the ODD a bit more? These concerns have also come up for DS. Did you find that medication helped with those symptoms?

Medication helps some with ODD but behavior modification helps more. We found that the ADHD meds help him focus more so that we can work on teaching him proper behavior. Without the meds he can't focus on anything and we get nowhere with therapy.

sunandsand · September 2012

Can you all tell me more about behavior modification? Our 3 yo hasn't officially been diagnosed but I've had 4 professionals tell me he likely has it but is too young to do anything about it yet. This is incredibly frustrating, I feel like we are just sitting around struggling at this point...

sunandsand · September 2012

And I would love for you all to share what your 3-4 year old was like prior to diagnosis...symptoms, struggles, etc.

wino2006 · September 2012

DD1 was diagnosed shortly after she turned 5 after neuropsych testing by a neuropsychologist. Prior to that she had been diagnosed by an OT with sensory processing disorder (mostly sensory seeking). She is in Kindergarten and so far is doing well. She has the combined subtype (hyperactivity and inattentiveness with some impulsiveness). We are not using medication at this point and are rather using sensory input to help her calm her body down and focus. We use hand fidgets, gum, mini-trampoline and bouncy seats both at home and at school. At school they allow for multiple motor and sensory breaks for her. I am in close contact with her teacher and have asked her to let me know when DD1's ADHD interferes with her learning-at that point we will start medication.

When DD1 is bouncing off the walls (literally), we redirect her to the trampoline or swing outside. When she is constantly making noises and talking we have her chew on a chewie tube or gum.

Since she was 2 or 3 we noticed that she wasn't like typical children. She couldn't sit still and was into everything. Our house looked like Fort Knox because she got into so much. When we went to peoples' houses, she would open their cupboards and drawers and pull stuff out. She would do this at the doctors office too. At stores, she would touch EVERYTHING. She would bolt out into parking lots and take off running from us. She had no fear of strangers or strange places. She has never been a good sleeper and gets by on less sleep than most kids. She is/was constantly moving. Brushing her hair or doing anything to her hair is nearly impossible because she doesn't stop moving long enough for me to do it. I end up following her around the house combing her hair. I have to repeat directions 50 times before she will follow through. She either doesn't hear me because she is focused on something else or she gets distracted in the process of doing what I asked her to do. She responds best to visual cues (clothes laid out, shoes set out etc). At first I thought this was typical toddler behavior but it continued as she got older and should have outgrown it so I knew something was off and suspected ADHD. Now that I have DD2 who appears to be a typical developing child, I see that the differences between the two are drastic. My 2 year old follows directions better than my 6 year old.

It's a rough, challenging road. While DD1 can be a challenge, she is also a delight. She is smart, caring and imaginative. Kids love her energy. She tends to play with boys because only they seem to be able to keep up with her ha! It helps to educate yourself. When you understand what is going on in their brains, it's easier to understand and empathize with them and know that they are not being naughty or intentionally behaving this way. I talk with DD1 about it too. We talk about how her brain works a little differently and she needs "tools" to help her. Good luck!

august06mom · October 2012

wino2006:

DD1 was diagnosed shortly after she turned 5 after neuropsych testing by a neuropsychologist. Prior to that she had been diagnosed by an OT with sensory processing disorder (mostly sensory seeking). She is in Kindergarten and so far is doing well. She has the combined subtype (hyperactivity and inattentiveness with some impulsiveness). We are not using medication at this point and are rather using sensory input to help her calm her body down and focus. We use hand fidgets, gum, mini-trampoline and bouncy seats both at home and at school. At school they allow for multiple motor and sensory breaks for her. I am in close contact with her teacher and have asked her to let me know when DD1's ADHD interferes with her learning-at that point we will start medication.

When DD1 is bouncing off the walls (literally), we redirect her to the trampoline or swing outside. When she is constantly making noises and talking we have her chew on a chewie tube or gum.

Since she was 2 or 3 we noticed that she wasn't like typical children. She couldn't sit still and was into everything. Our house looked like Fort Knox because she got into so much. When we went to peoples' houses, she would open their cupboards and drawers and pull stuff out. She would do this at the doctors office too. At stores, she would touch EVERYTHING. She would bolt out into parking lots and take off running from us. She had no fear of strangers or strange places. She has never been a good sleeper and gets by on less sleep than most kids. She is/was constantly moving. Brushing her hair or doing anything to her hair is nearly impossible because she doesn't stop moving long enough for me to do it. I end up following her around the house combing her hair. I have to repeat directions 50 times before she will follow through. She either doesn't hear me because she is focused on something else or she gets distracted in the process of doing what I asked her to do. She responds best to visual cues (clothes laid out, shoes set out etc). At first I thought this was typical toddler behavior but it continued as she got older and should have outgrown it so I knew something was off and suspected ADHD. Now that I have DD2 who appears to be a typical developing child, I see that the differences between the two are drastic. My 2 year old follows directions better than my 6 year old.

It's a rough, challenging road. While DD1 can be a challenge, she is also a delight. She is smart, caring and imaginative. Kids love her energy. She tends to play with boys because only they seem to be able to keep up with her ha! It helps to educate yourself. When you understand what is going on in their brains, it's easier to understand and empathize with them and know that they are not being naughty or intentionally behaving this way. I talk with DD1 about it too. We talk about how her brain works a little differently and she needs "tools" to help her. Good luck!

Thanks Wino -- this is all so helpful, and so much of it rings true for DS! I love the gum or straw idea. We do a lot of behavior modification at home, but I'm not sure if the next step will be medication. He's been in school for less than a month, but things seem to be going pretty well at this point with just a few bumps in the road. There were so many problems last year that it has been a nice surprise. We shall see how it continues.

Of course, this means that things have been much harder at home because he bottles it all up until he gets home and then lets loose. I don't think medicating just for behavior at home will be in his best interest, but we have to talk to the new behavioral pedi. Social events are sometimes hard too because he sometimes seems to just take things too far. He's also always extremely drawn to the kids who are causing trouble -- this is not said to excuse his behavior but rather as a worry. I really fear for his teenage years if he's more interested in the idea of causing trouble and what goes along with it.

wino2006 · October 2012

august06mom:
wino2006:

DD1 was diagnosed shortly after she turned 5 after neuropsych testing by a neuropsychologist. Prior to that she had been diagnosed by an OT with sensory processing disorder (mostly sensory seeking). She is in Kindergarten and so far is doing well. She has the combined subtype (hyperactivity and inattentiveness with some impulsiveness). We are not using medication at this point and are rather using sensory input to help her calm her body down and focus. We use hand fidgets, gum, mini-trampoline and bouncy seats both at home and at school. At school they allow for multiple motor and sensory breaks for her. I am in close contact with her teacher and have asked her to let me know when DD1's ADHD interferes with her learning-at that point we will start medication.

When DD1 is bouncing off the walls (literally), we redirect her to the trampoline or swing outside. When she is constantly making noises and talking we have her chew on a chewie tube or gum.

Since she was 2 or 3 we noticed that she wasn't like typical children. She couldn't sit still and was into everything. Our house looked like Fort Knox because she got into so much. When we went to peoples' houses, she would open their cupboards and drawers and pull stuff out. She would do this at the doctors office too. At stores, she would touch EVERYTHING. She would bolt out into parking lots and take off running from us. She had no fear of strangers or strange places. She has never been a good sleeper and gets by on less sleep than most kids. She is/was constantly moving. Brushing her hair or doing anything to her hair is nearly impossible because she doesn't stop moving long enough for me to do it. I end up following her around the house combing her hair. I have to repeat directions 50 times before she will follow through. She either doesn't hear me because she is focused on something else or she gets distracted in the process of doing what I asked her to do. She responds best to visual cues (clothes laid out, shoes set out etc). At first I thought this was typical toddler behavior but it continued as she got older and should have outgrown it so I knew something was off and suspected ADHD. Now that I have DD2 who appears to be a typical developing child, I see that the differences between the two are drastic. My 2 year old follows directions better than my 6 year old.

It's a rough, challenging road. While DD1 can be a challenge, she is also a delight. She is smart, caring and imaginative. Kids love her energy. She tends to play with boys because only they seem to be able to keep up with her ha! It helps to educate yourself. When you understand what is going on in their brains, it's easier to understand and empathize with them and know that they are not being naughty or intentionally behaving this way. I talk with DD1 about it too. We talk about how her brain works a little differently and she needs "tools" to help her. Good luck!

Thanks Wino -- this is all so helpful, and so much of it rings true for DS! I love the gum or straw idea. We do a lot of behavior modification at home, but I'm not sure if the next step will be medication. He's been in school for less than a month, but things seem to be going pretty well at this point with just a few bumps in the road. There were so many problems last year that it has been a nice surprise. We shall see how it continues.

Of course, this means that things have been much harder at home because he bottles it all up until he gets home and then lets loose. I don't think medicating just for behavior at home will be in his best interest, but we have to talk to the new behavioral pedi. Social events are sometimes hard too because he sometimes seems to just take things too far. He's also always extremely drawn to the kids who are causing trouble -- this is not said to excuse his behavior but rather as a worry. I really fear for his teenage years if he's more interested in the idea of causing trouble and what goes along with it.

Your welcome! Glad I can help. Several of my co-workers have kiddos with ADHD that are a bit older and I have found it extremely helpful to get their input and hear their stories. It also helps to commiserate together on the challenges we face

We are having the same struggles with DD1 at home after school. Although I do feel being in school with the structure has seemed to help and she is a bit more eager to go to bed when it's bedtime (tonight she was asleep at 7:30pm). She is drawn to media (TV, computer) on her days off and it's a constant battle to get her off and I feel that makes her ADHD worse. I already learned that the teacher has separated DD from her best bud in the classroom. She told me that the teacher told her that she has a hard time focusing and listening when her pal is by her-she claims he talks too much LOL. Not looking forward to the challenges we face and the teen years. I am hoping that if I stay involved and on top of things, that will help. I signed up to volunteer in her class a couple times a month. I love working with the kids and it gives me a clearer picture of DD in the classroom. Good luck with everything and keep me posted!

Please tell me your ADHD story

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