Please help. I think DS has ADHD but he's so young and long wait to see Dr.

[Anonymous]

I'm hoping some of you can help me (or at least get me to stop crying). My son is only 4 1/2 years old, but his preschool teachers keep telling me how concerned they are and that he needs to see someone ASAP. we made an appointment at Johns Hopkins but it's a 4-5 month wait. I've been trying to research ADHD, but everyone seems to have older kids. the problem is that my DS is so unfocused that he is VERY behind in academics. While his classmates are now starting to learn to write their names and letters, my DS can't even identify letters. we try flashcards, leapfrog, letter puzzles, but he can't even focus on one letter. I'm not even done saying "DS, What's this letter?" before his attention has turned to the truck or car or window or spot on the floor. the more I try the less he focuses. Even when I try to talk to him in a sentance "how was your day" his mind has already jumped to something else. My worry is that if I wait until 6 or whenever it is to "accurately diagnose" adhd, he'll be so far behind in school that it'll be too late.

He also can't sit still. He can not sit through dinner - he's up in about 5 or 6 minutes. he has extraordinary energy. he basically does not sit down until bed time. He shows some impulse behavior, but not much. He'll kick or push when he's upset, but more often, I see him about to kick/push, then stop and say something like "mommy, you're mean."

I'm just beside myself with worry - primarily about school. He'll be starting kindergarten this fall and I know it'll be so hard since he doesn't know his letters while everyone else is writing. i think this Valentines day just hit me because all his classmates signed their own valentines - except my DS, who, of course, isn't even close to doing that.

Does anyone have any thoughts, advice, words of encouragement or 'been there" stories?

Thanks in advance

[Anonymous]

In retrospect, I think it was clear that my DS had ADHD since the time he was 3 years old. Georgetown University Hospital has a developmental clinic. I think you'd be able to get in there for an evaluation sooner. Once you get the right help and treatment, it gets better. Keep your chin up. It will all be ok. I always remind myself that DS is the same wonderful little baby that I brought home from the hospital. Now we just know more about him and how to help him reach his full potential.

[Anonymous]

Sounds like there might be more than ADHD going on (or something else entirely). I would start with your regular pediatrician or a developmental pediatrician. We see Dr. Robin Chernoff at Children First Pediatrics in Rockville. Others highly recommend Dr. Chuck Conlon in Chevy Chase. You also could look into the NIH ADHD study http://intramural.nimh.nih.gov/chp/adhd/index.html
Your do not need to have a prior diagnosis, and they do a full evaluation of your child and provide recommendations for next steps, etc. Best of all, it's free.

[Anonymous]

BTDT mom here. Here's what I can say. First, it's great if kids know all of the stuff you are working on before they hit kindergarten, but not necessary. Some kids start kindergarten not even knowing any letters and they learn it all in kindergarten.

Second, just because he isn't spitting it back to you doesn't mean it isn't going in. What amazed me about my ADHD son after he started on medication just how much knowledge and how many skills he actually had because he certainly couldn't retrieve information on command. I felt like someone had replaced him with a new and improved model (but still as cute).

Third, call the school and find out how to get him evaluated for an IEP. Before he hits school age, it is far easier to get one because the qualifications are lower. Every parent I know who did not take this step regrets it. If you read this today, this should be the highest priority on your agenda because your son is so close to the cut off for the lower eligibility.

Fourth, you don't need a specialist to evaluate your son. You'll hear otherwise and for my first ADHD son, I did all of the specialty evaluations. I paid out of pocket because they were not covered by insurance and honestly, while they are interesting, it didn't make a hill of beans of difference in terms of his IEP, education or medication. You can call your pediatrician, who will give you a Conners or Vanderbilt assessment for you, your son's other parent and your son's teacher to complete. Once they are done, you get an appointment and review medication and treatment plan. Again, others will tell you that you need a psychiatrist and maybe if medication management proves difficult for you son (it isn't for my kids - I have two ADHD boys) you will need a psychiatrist. But, most peds have a vast amount of experience with medication management of ADHD.

Fifth, relax. Once your son is treated, if it is ADHD and is surely sounds as if it is, the improvement is so immediate. He hasn't even hit kindergarten so he hasn't lost time in terms of his education. ADHD is extremely manageable.

Good luck and call for an IEP assessment.

[Anonymous]

In retrospect, we've been there! DS was DX'd with ADHD (combined type, but mostly inattentive) in first grade. But yes, he was highly distracted in preschool/unable to focus and yes, he went to kindergarten knowing only a few letters of the alphabet and a few numbers. He got an IEP on the basis of testing that the school did and on the basis of the ADHD diagnosis. He probably has dyslexia, which explains why he had no interest in letters/numbers. He has made a lot of progress but is only passing because he has an IEP in place - he is below grade level in reading and writing, but doing grade level work in math.

The diagnosis is only the first step - treating it has been harder than we expected, although again, he's made a lot of progress. Medication has helped but we haven't found the ideal one yet. Behavior plans at home and school, with rewards and consequences, have also been very helpful, as has greater consistency.

Hang in there!

[Anonymous]

Anonymous wrote:BTDT mom here. Here's what I can say. First, it's great if kids know all of the stuff you are working on before they hit kindergarten, but not necessary. Some kids start kindergarten not even knowing any letters and they learn it all in kindergarten.

Second, just because he isn't spitting it back to you doesn't mean it isn't going in. What amazed me about my ADHD son after he started on medication just how much knowledge and how many skills he actually had because he certainly couldn't retrieve information on command. I felt like someone had replaced him with a new and improved model (but still as cute).

Third, call the school and find out how to get him evaluated for an IEP. Before he hits school age, it is far easier to get one because the qualifications are lower. Every parent I know who did not take this step regrets it. If you read this today, this should be the highest priority on your agenda because your son is so close to the cut off for the lower eligibility.

Fourth, you don't need a specialist to evaluate your son. You'll hear otherwise and for my first ADHD son, I did all of the specialty evaluations. I paid out of pocket because they were not covered by insurance and honestly, while they are interesting, it didn't make a hill of beans of difference in terms of his IEP, education or medication. You can call your pediatrician, who will give you a Conners or Vanderbilt assessment for you, your son's other parent and your son's teacher to complete. Once they are done, you get an appointment and review medication and treatment plan. Again, others will tell you that you need a psychiatrist and maybe if medication management proves difficult for you son (it isn't for my kids - I have two ADHD boys) you will need a psychiatrist. But, most peds have a vast amount of experience with medication management of ADHD.

Fifth, relax. Once your son is treated, if it is ADHD and is surely sounds as if it is, the improvement is so immediate. He hasn't even hit kindergarten so he hasn't lost time in terms of his education. ADHD is extremely manageable.

Good luck and call for an IEP assessment.

What's the cut off for lower eligibility for an IEP?

[Anonymous]

I would keep the Kennedy Krieger appointment. We didn't like the Stixrud group, and it takes just as long to see them.. But given the fact that you don't know if this is a learning disability or ADHD, maybe you should also follow through with the developmental pediatrician.
It only took us a few weeks (even that seemed like forever) to get in to see a pediatric psychologist. Perhaps you can start there?

[Anonymous]

Anonymous wrote:BTDT mom here. Here's what I can say. First, it's great if kids know all of the stuff you are working on before they hit kindergarten, but not necessary. Some kids start kindergarten not even knowing any letters and they learn it all in kindergarten.

Second, just because he isn't spitting it back to you doesn't mean it isn't going in. What amazed me about my ADHD son after he started on medication just how much knowledge and how many skills he actually had because he certainly couldn't retrieve information on command. I felt like someone had replaced him with a new and improved model (but still as cute).

Third, call the school and find out how to get him evaluated for an IEP. Before he hits school age, it is far easier to get one because the qualifications are lower. Every parent I know who did not take this step regrets it. If you read this today, this should be the highest priority on your agenda because your son is so close to the cut off for the lower eligibility.

Fourth, you don't need a specialist to evaluate your son. You'll hear otherwise and for my first ADHD son, I did all of the specialty evaluations. I paid out of pocket because they were not covered by insurance and honestly, while they are interesting, it didn't make a hill of beans of difference in terms of his IEP, education or medication. You can call your pediatrician, who will give you a Conners or Vanderbilt assessment for you, your son's other parent and your son's teacher to complete. Once they are done, you get an appointment and review medication and treatment plan. Again, others will tell you that you need a psychiatrist and maybe if medication management proves difficult for you son (it isn't for my kids - I have two ADHD boys) you will need a psychiatrist. But, most peds have a vast amount of experience with medication management of ADHD.

Fifth, relax. Once your son is treated, if it is ADHD and is surely sounds as if it is, the improvement is so immediate. He hasn't even hit kindergarten so he hasn't lost time in terms of his education. ADHD is extremely manageable.

Good luck and call for an IEP assessment.

I certainly agree with the recommendation this parent makes for an IEP assessment but, while ADHD is hardly the worst thing in the world for a child to have, treating it is not as easy in my opinion as the poster makes it out to be. First, studies have shown that up to 2/3s of kids with ADHD have at least one other co-condition, such as anxiety, learning disabilities, ODD etc. Second, in our experience, ADHD medication is not so easy to manage. For some kids, the benefit is immediate, but both dosage and finding the proper medication can take quite a bit of time -- and can suddenly change as kids get older. Our son currently takes 2 kinds of medication for ADHD that work reasonably well but are by no means perfect. Third, most kids experience side-effects from the medication, which can vary in severity (loss of appetite, insomnia, rebound effect when the medication wears off).

Good luck!

[Anonymous]

I agree with PP that you should have a global evaluation and go in with an open mind in case there is something else going on. Keep your KK appointment, but if you can get in to see a developmental pediatrician here that might be better.

[Anonymous]

Are you in Fairfax County? Because if you are they have an excellent evaluation program for kids before they get to kindergarten called Child Find. (And it's free.) They identify problems and provide services if needed. the phone number is 703-204-6760.

[Anonymous]

Anonymous wrote:Are you in Fairfax County? Because if you are they have an excellent evaluation program for kids before they get to kindergarten called Child Find. (And it's free.) They identify problems and provide services if needed. the phone number is 703-204-6760.

Montgomery County has this as well.

[Anonymous]

thank you everyone! You have definitely given some great advice. I already put a call in to our school for an IEP as well as "Child Find" (we're in Fairfax County). Hopefully we can get that eval. sooner rather than later. I'm also definitely getting a developmental pediatrician appt. (as well as that NIH ADHD study - it sounds interesting).

12:46 - thank you so much for taking the time to respond. You definitely eased my mind.

Also, to the poster that recommended NIH - you mentioned that it sounds like more than ADHD - what did you mean? does it sound like another dx altogether (ASD? something else?) or are you thinking it sounds like another secondary or co-condition that usually accompanies ADHD?

Everyone else - your feedback really helped and if you think of anything else, please let me know.
Thanks again.

[Anonymous]

hey OP - chin up! It is all going to be okay, trust us when we tell you that.

The first time someone tells you that they "think there is something WRONG with your child" you feel like someone has just kicked you in the stomach, you feel like a moron for not catching it sooner, you feel badly for your child and you are totally confused because you don't even know where to start.

1) I was able to get in to Kennedy Krieger 3 days after I called them - they had a last minute cancellation. It happens a lot so don't be surprised if you get in before 4 months. I like them better than Children's as they are less apt to "label" your child unless they are sure of it.

2) Have a meeting with your DS' teachers and ask them for specific things that they believe he should already know how to do, but isn't grasping. kids at that age are all over the map with respect to what they know and don't you know how to do. So, until you have concrete evidence that he's really behind, relax.

3) It does sound like there is something going on - more than just ADHD. But don't panic, it's not a life sentence! There's a ton of help out there, just be careful not to buy into all the snake oil salesman out there looking for distressed parents just like you - that will be willing to pay any amount of money just to ensure that there child will be okay.

From my experience with my DS- it sounds like ADHD/SENORY PROCESSING/AUDITORY PROCESSING.

How are his motor skills ? both fine and gross?

How is his speech?

Does he have friends?

How is his comprehension? when you read to him, can he remember things in the story?

Is he bothered by certain sounds?

Does he crave touch?

Does he bump into things?

Is he clumsy?

Lastly, ADHD hardly ever stands alone. there is usually something else going on - and it's usually an LD of some sort.

[Anonymous]

I hope the PPs have helped you relax a little! Your DS certainly isn't behind yet even though some other kids may be able to write better or even read. There's a huge range of 'normal' at this age and even halfway through K, 'age appropriate' is basically being able to scribble on some paper with a tripod grasp, recognizing letters make up words and starting to write your first name (I know because we just had my 4 yo's annual IEP review and these are his goals for halfway through kindergarten!). If your DS does have challenges, you certainly have identified it very early on and have plenty of time to get the supports he may need. It's going to be okay!

I second the recommendations for getting a global evaluation. In addition to the NIH study, you might consider some of the KKI studies. I found the NIH teams to be more informative and helpful but certainly the KKI folks know what they're doing and can give you an idea of what you're dealing with while you're waiting to get in for global evaluation. Here are some links to their studies

ADHD
http://lnir.kennedykrieger.org/flyers/NA_00012868_Preschool_Flyer.pdf (ages 4 & 5 – and not just for girls.)

Developmental Delays
http://www.kennedykrieger.org/pdf/research/children-with-autism.pdf - the study is primarily looking for kids with ASD but they’re also interested in kids who are developmentally delayed but not ASD.

[Anonymous]

Anonymous wrote: ...Fourth, you don't need a specialist to evaluate your son. You'll hear otherwise and for my first ADHD son, I did all of the specialty evaluations. I paid out of pocket because they were not covered by insurance and honestly, while they are interesting, it didn't make a hill of beans of difference in terms of his IEP, education or medication. You can call your pediatrician, who will give you a Conners or Vanderbilt assessment for you, your son's other parent and your son's teacher to complete. Once they are done, you get an appointment and review medication and treatment plan. Again, others will tell you that you need a psychiatrist and maybe if medication management proves difficult for you son (it isn't for my kids - I have two ADHD boys) you will need a psychiatrist. But, most peds have a vast amount of experience with medication management of ADHD.

I certainly agree with the recommendation this parent makes for an IEP assessment but, while ADHD is hardly the worst thing in the world for a child to have, treating it is not as easy in my opinion as the poster makes it out to be. First, studies have shown that up to 2/3s of kids with ADHD have at least one other co-condition, such as anxiety, learning disabilities, ODD etc. Second, in our experience, ADHD medication is not so easy to manage. For some kids, the benefit is immediate, but both dosage and finding the proper medication can take quite a bit of time -- and can suddenly change as kids get older. Our son currently takes 2 kinds of medication for ADHD that work reasonably well but are by no means perfect. Third, most kids experience side-effects from the medication, which can vary in severity (loss of appetite, insomnia, rebound effect when the medication wears off).

My experience is that ADHD is not so easily treated by general pediatricians for the reasons the immediate PP indicated - and our very excellent general pediatrician agrees. Now that we're on maintenance, we see the gen ped for refills but any tinkering with meds is run by the developmental ped first. Conners/Vanderbilt forms can be used to rate the severity and number of symptoms but it's not appropriate to use them soley for diagnosing ADHD. It's more complicated than that.