ADHD medication Trial - Need Help

[TiredSoul]

Hi Everyone!
It's been a couple months since I posted. I'll post a quick summary and then my questions.

5 yr old son in 1/2 day Kindergarten
diagnosis'd with ADHD (combined) and severe ODD in Oct. 07
Finally got evaluated by school and an IEP in place in Mar. 08
IEP is for social/emotional/behavioral issues only
130 IQ - very bright
Extremely hyper
Extremely defiant
ALWAYS wants to be in charge/the boss/do things his way

We started ADHD trial (Focalin XR 5 mg) in Dec. He took this for 3 mos. During that time we noticed:
1. stomach aches every day
2. loss of appetite (I think he lost close to 10 lbs)
3. became anti-social (no longer wanting to play with friend or visit neighbor)
4. sad/depressed/angry - more so than usual
5. stopped leaning on me all the time and no longer sat ON kids during circle time - in fact sat as far away from everyone as possible
6. stopped licking/mouthing objects (for the most part)
7. evenings remained totally out of control and chaotic
8. mostly good days at school

We decided to try a new medication and a new doctor. He took him off the medications for 7 days and it was TERRIBLE. Every day in school was bad. It made us really see that the medications were working, even tho we wondered if they were or not. The teacher noticed immediately.

Started Adderall XR 5 mg on 3/18/08. Here is what we see:
1. rarely ever a stomach ache
2. some headaches
3. he isn't as willing to take the pill as he was with the last one
4. remains social
5. appetite is better than when on Focalin
6. chaotic evenings - bouncing off the walls
7. mix of good/bad school days
8. still sad/depressed/angry at times - more angry than sad
9. says horrible things (like when he grows up he is going to buy a gun and shoot himself, or he is going to kill me or others, calls himself stupid - this was happening a little with the other medication too)

So now what? I really do not know what to do. I don't know if we should increase his dose and see - or if we should try something else - or what. I believe there is more there than ADHD/ODD. When I look at the situation, to me the most worrisome problems are the anger/sadness/depression/poor self worth. Do we focus on fixing those problems first? Or are those problems because of the ADHD and because he senses he is different from others? I just want a happy well adjusted child who can live to his full potential. I guess that's what we all want.

Any thoughts/advice/suggestions? Thanks everyone. I appreciate each and every one of you.

 

[Big Bad Kitty]

Hi sweetie,

I remember you! Who diagnosis'd your son?
If he is having these types of reactions to ADHD medications, there is a chance that he is not ADHD at all. I would seek out a neuropsychologist and have him evaluated. If there is a mood disorder or something else, the stims could be making him worse.

Hang in there, kiddo, and keep us posted.

 

[smallworld]

Jules, you yourself say the biggest problem is "anger/sadness/depression/poor self-worth." That sounds much more like a mood issue than ADHD. Any ADHD stimulant can make mood issues worse. Furthermore, you're really not treating the root cause of the problem.

What kind of doctor is prescribing the medications? How did the clinical psychologist diagnosis ADHD (tests, questionnnaires, etc)? You may very well need new evaluations with both a child psychiatrist and a neuropsychologist to really figure out what's going on.

 

[happymomof2]

My son did best on concerta, but he still wouldn't eat and made no eye contact with anyone.

We did ritalin - can't remember why he came off that.

Adderall was horrible - he had to take something at night to help him sleep.

He wasn't on medications for 3 years but since high school started this year he needed something. I got a natural medication called Attend. It's working with no side effects. Well the only side effect is my wallet, the pills are 38.95 for 60 and he has to take 2 a day. But, hey if there working I will buy a truck load!!

 

[dcwsaranac]

I'm no expert, but I can share my observances of my son as the medications started taking effect (Metadate-day/Buspar-evening). He's near the same age, and had many of the same behaviors.

We saw an almost immediate reduction of ADHD behaviors in school and an increase in ODD behaviors at home when we started the Metadate. The ADHD behaviors were off the chart on some evenings as the Metadate would wear off before dinner. The addition of the Buspar in the evening did the trick.

I personally think that his increase in ODD behaviors came with the new found thought processes. He was never told what the Metadate was expected to do for him and told us after two weeks that "I have time to think now." This was new to him - I don't think he knew how to process his thoughts.

Time, patience, and a behavior modification plan seems to be doing the trick for the ODD.

Do you have a behavior modification plan? We have been using immediate consequences (good and bad) and mega-rewards. With the exception of points/tokens earned for good behaviors that he can trade for the mega reward (computer time / scholastic books) we don't dwell - once something is dealt with it's over and forgotten.

I was lucky: we went to a psychiatrist who did a great job of diagnosing before sending us to the Mdoc for medications. We've been 2/0 on the medications and couldn't be happier with the results.

Whatever you do - don't give up.

 

[TiredSoul]

Hi again and thanks for the responses.

Clinical psychiatric diagnosis'd him using questionnaires - don't remember the names but could find them.

dcwsaranac, I think you helped me figure out how to explain it. I believe the ADHD symptoms have decreased at school since the medications and the ODD ones have increased at home. Or - he does't really have ADHD and the behavior modifications in place at school are helping during the day - and we continue to not have a grasp on anything at home.

His pediatrician is the one prescribing the medications. We are now longer going to the psychologist who diagnosis'd him. He was no help to us in giving us tools on how to deal with difficult child. It's like he diagnosis'd him, told us to watch 123 Magic, and that was it. I am having a hard time finding someone else to work with our family. I would absolutely love it if someone could come into our home and see us interact and COACH us. I am back to thinking I am the cause of all his behavior problems.

How do you go from a completely disorganized chaotic home environment with no real rules or expecatations - to where we need to be?

It's not normal for a 5 y.o. to say/think the things he does. To me, that indicates a mood disorder. The medications scare me. I was hoping the get lucky with the first medication at lowest dose. Argggh.

 

[smallworld]

Jules, since you're already having difficulty with the medications, I'd recommend taking your difficult child to a child psychiatrist, both to help refine the diagnosis and treat with the appropriate medications. Psychiatrists are much more skilled in this area than pediatricians.

I'd also recommend a neuropsychological evaluation. Dxing ADHD is much more complicated than filling out questionnaires. My son hits the criteria for ADHD on those questionnaires, but his neuropsychologist strongly believes these symptoms are the result of his bipolar disorder rather than true ADHD. The symptoms of many childhood disorders overlap, and it takes a skilled professional to sort it all out. Because your son is young and has not undergone extensive testing by a neuropsychologist, I would be wary of accepting an ADHD diagnosis. It could very well be something else.

Hang in there. I hope you get some answers soon.

 

[susiestar]

I also recommend seeing a child psychiatrist. It seems you are dealing iwth much more than ADHD. I have seen lately that most parents start with ADHD and seems we end somewhere else. Makes me wonder if a lot of kids in the past haven't had other problems that got missed.

Has your son seen an Occupational Therapist for sensory integration disorder? I know that some symptoms seem to fit. With thank you, he would talk about hating himself, etc... But the brushing therapy, with joint compression, actually made a difference in how he felt about himself. It was a BIG difference. We are still doing it, and it really has helped.

I truly think your situation is more complex than ADHD. I'm sorry.

Susie

 

[dcwsaranac]

I think seeing a psychiatrist would do a world of good.

I had to jump through some hoops with the insurance company to make it happen, but I took my boy to a well respected mental health facility nearby. A psychologist evaluated him and made the diagnosis.

From there we were allowed to take the diagnosis to anyone we wished for treatment, but ended up back at the same facility since nobody wants to consider treating a 5yr old child. The psychiatrist there did a great job of reviewing the diagnosis and recommended Metadate first, then the addition of Buspar. Both were spot-on.

As to Bug's behavior changes, I believe that it was the combination of medicatin, plus behavior plan at his school that made the difference there. We don't have a formal plan at the school, but have maintained constant communication with his teacher, and she has done a great job.

At home, we only had the behavior plan since the Metadate wore off around 4pm. We initially saw a rise in the ODD behaviors. I personally believe (and phyciatrist supported the theory) that this was because he didn't know how to manage his thoughts, and he had a lot of pent up frustration from before we started treatment. It's gotta be rough going through life thinking you're a "bad child" because you are always getting in trouble. He said a lot of hateful things about himself, us, and others during this time.

We worked on establishing a simple, but solid behavior plan. 1-2-3 Magic may work for a lot of kids, but it didn't for mine (no matter how carefully we followed the plan). If you'd like to know exactly what our plan is, I'll be happy to send you a private message with the details. Lots of kids don't like change, and he struggled with it a little, but he appreciated the simple rules of the plan.

I can't stress enough how important it is to have a plan - a written plan - in place. I've been told more than once that you can't medicate ODD (short of dropping them into zombie-land). By the way, writing it down isn't to keep him in compliance (does he read yet?) but you.

We hated the idea of adding more drugs (we've seen over-medicated kids too often), but finally yielded when we grew tired of hearing how he was such a wonderful kid a school, and seeing the adHd child run loose at home. It made a huge difference.

My children aren't perfect angels (no child is), but I can finally trust that my boy can participate with his peers and not stand out as the "spoiled, rude, mean, poorly-parented, trouble-maker." Only the parents that saw him before treatment know there was a problem. They know that we've been working hard, and have been very forgiving of past trangressions.

You're not alone. Keep loving him - and when he pushes you away, love him anyway.

 

[TiredSoul]

Ok, thanks everyone. I am on a hunt now for a psychiatrist. There are only 8 listed in my city and 2 in the neighboring city. I will start making calls.

When I last went down the path of trying to have a neuropsychologist evaluation done, they would not do it until he was evaluated by the school and then only after that if we didn't agree with the sd evaluation.

He was evaluated by the Occupational Therapist (OT) person at school using the BOT-2. He fell within the avg range compared to typically developing kids his age. Teacher and I also completed a Sensory Profile questionnaire. They stated auditory processing, oral sensory processing, and visual distractibility were areas he had the most difficulty with. He would benefit from sensory breaks - like movement, heavy work, use of a quiet space. No delays in fine or gross motor skills. Occupational Therapist (OT) person thought he was a sensory seeker. We bought him a trampoline so he could get some of that movement and energy out.

dcwsaranac, I would love to see your behavior plan to help get some ideas. Thank you for offering. Metadate is similar to Focalin which we tried first. I am not familiar with Buspar but see it is an anti-anxiety medication. I think something like that may help him. Everyone has mentioned his issues at school seem to stem from anxiety (from not being in control, transitions, etc.)

Thanks again everyone. I won't give up... I just needed to get my thoughts out there and organized in my own head and as always your input and suggestions help tremendously. Have a great & peaceful weekend!