Two Steps Forward, One Step Back?

[HMBgal]

Forgive me, but my search hasn't really turned up what I'm looking for, so if this has been discussed in another thread, feel free to "refer me out."

I'm concerned with the last few days and what I've seen my grandson going through. He had a few good days since he started taking Concerta. "Good" meaning somewhat reasonable, no one got kicked, hit, spit at, or called really foul names. He has an aide at school now and things have been going well there, but I still feel like I need more detail about that. Is he still trying, but not able, to have these behaviors affect others at school because the aide is on top of him all the time? He absolutely adores her, and she leaves tomorrow, to be replaced by another. difficult child is aware of this and seems okay, although it could be troubling him and trying to talk with him is weird; just ignores or says "I don't know" much of the time.

His behavior has deteriorated so much over the last couple of days that it's just heartbreaking to watch. Anxiety, frustration to the point of getting physical over any little tiny thing, crying, and he looks so damn sad.

He's happy while on the iPad playing math Bingo, sight word learning games, etc., but getting him to do any art, write a couple of things for his "homework," sending a thank you note (that was his idea) is potential for a meltdown because he can't make it perfect. This is new and really causing him problems; almost OCDish, which he never was before. I'm trying to figure out what's "normal" and what are contraindications that the medications need to be stopped. By the time you get through to an HMO and wait a week for them to call you back, a lot can be happening. He's a great reader, but only manages to read a few pages before he wants to stop. I'm happy to keep reading to him, but when he's done, that's it.

So, for people who have kids taking Concerta, does this happen frequently? These fits and starts? Two steps forward, one step back? Or is this a sign of something more wrong than what we started with?

 

[soapbox]

Well, lets see.
A boy. 5 years old, just getting going in school.
At least one parent with ADD.
And some behaviour issues...

Am I right so far?

So, psychiatrist probably assumes that for a minimum, he will be ADD or ADHD.
Might be a reasonable assumption. Hard at age 5 - not always enough data to go on yet.
But it would explain the trial of Concerta - very common rx for ADHD.

Is there more going on? probably.
But not necessarily something big - like mental illness, or Autism Spectrum Disorders (ASD).

One big red flag, to me, is the fine motor skills stuff.
Doesn't like art.
Doesn't like writing because he can't get it perfect. (really? or is that an excuse, because he really can't quite get his hands to do what his brain is saying?)

Given that 50% of kids with ADHD also have Developmental Coordination Disorder (DCD)... there's a fair chance that he has motor skills issues.
Best way to handle this - at least initially - is with an Occupational Therapist (OT) evaluation for motor skills.
While you're at it, have the Occupational Therapist (OT) evaluate for sensory issues, too.
Occupational Therapist (OT) doesn't give any dxes... but does run evaluations, generates reports that others (including other medical, and schools) use. AND has therapies to help. Early intervention helps.

(Developmental Coordination Disorder (DCD) diagnosis seems to be hard to get - everywhere. Doesn't make it less real. But getting help is more important than getting the diagnosis.)

Next... trouble with transitions. Can be an executive functions issue - no medications for THAT, but there are things that help. Have you seen the book "the explosive child" (Green)?

FWIW... I don't see these as contra-indications for Concerta.
Instead... by peeling back part of ONE layer, you can see other issues that were not so obvious before.
This is NOT unusual.... and especially in the younger child.

 

[BusynMember]

Hi there and welcome to the board.

Can you tell us about your child's very early development? To me, and I'm not an expert, but it seems t hat more is going on than ADD. Who diagnosed him?

No medication is going to be helpful to every child. My son, when he took stimulants, got mean and aggressive on them, and he is not that way normally. In his younger years, stimulants were bad for him. I was told that some kids do not do well on stimulants until they are older. Also, if more is going on than ADHD, the stimulants may not be the right treatment for your particular grandchild...keep us posted

 

[buddy]

Yes, as psychiatrist says, concerta is a 30/60/10 I think she said medication and even though this is supposed to stay more even in the blood stream there are others that even do it differently. Each kid is different. My son has a rebound kind of thing when Ritalin wears off, it is more gentle on concerta for him but I feared that he was in general more aggressive on it and his psychiatrist says that does happen with long acting medications for some. His body may not be processing it well.

He also may be worried about hte changes. I have to re-read your post, does he know the cool one is leaving?

Sometimes I get more time reading out of Q if I take turns, I read a little, he reads a little.....I often have to take the biggest chunks. But he will continue then. Same thing for him though, when done, he IS DONE.

Remember, when a behavior plan changes, kids typically get worse before they get better. Sometimes there is a honeymoon, but it is a well known behavior principle so if that is possibly the cause, his world is shaken and he may be trying to desperately get things back to "normal" even if it was worse for him just because it is familiar and there is security in what is predictable.

Hope it is just a quick phase, there will always be ups and downs.... and I know I for one, often think, is this the time things wont go back to "normal" for us anyway. by the way, each and every single time Q has a growth spurt, a developmental improvement, (like reading goes up or vocabulary increases) in hindsight he has had a rougher patch. Just one more thing to monitor over the years..... Plus, there are many times when an illness is brewing and not until it hits do I look back and realize that behavior was the first symptom. Always check for tooth pain, snotty nose, etc.... many little things feel BIG to a difficult child. even shoes or undies that are getting a little too small. It is exhausting.

 

[HMBgal]

Thanks for your helpful responses. Yes, Explosive Child follower, as much as possible. I've read the Explosive Child for younger children (a sticky on this board, I think).

Today was marginally better, although I got punched in the chest pretty hard and bit hard, too. It just hurts my feelings, although I try and separate the behavior from the child: I pretend that I'm at work and just got socked by a kid. Everything was fine; everyone was bending over backwards to be calm, work the behavior plan, etc. But, when it was time to leave the coffee shop where we were having quite a nice time, BAM. Anger, aggression, my daughter now has two big bruises where he's bit her. Then like a lightning strike, he's fine, but I'm done for the day, daughter is shaking, and poor little sister (easy child 3 year old) is flummoxed by the sudden changes. Up til then, difficult child was playing so sweetly with her. Just another day in the life, I guess.

But in the end, good things happened and I'm going to focus on that. He is verbalizing some good things, too. The new aide, who is also temporary because she's graduating from her school as a fully fledged teacher, is a delightful young woman, also, and when I picked him up from school today, he was calm, happy, chatty, and played nicely with his sister while the classroom teacher and I talked.

The teacher keeps telling us to push for the Occupational Therapist (OT) evaluation, which Kaiser is refusing to do. He really had bad time in music yesterday, but it was his first time, because that always takes place after recess, which is when he has to leave. He had a hard time crossing midline (which he can do because I've tested him with the simple tests that I do when I'm assessing kids for adapted PE qualification) with a patty-cake rhythm game. With the aide, he did make it all week until noon, so that is huge. Next week, he goes from 8:30-2:40 two days, and til 1:10 three days. I'm a little nervous about that; that's a pretty long day for a five year old.

Funny that Developmental Coordination Disorder (DCD) was mentioned. I did a graduate paper on it and it is a somewhat controversial subject in that some people don't believe it exists, and they will quote studies that show that these kids don't usually get any more coordinated with therapy anyway. This was in 2001 and I had to use mostly European sources, so I'm guessing that I need to do some more research to see what's been done more recently. His gross motor is really good: rides a bike without training wheels, uses regular inline skates, scooters, climbs like a monkey, etc. It's the fine motor: forming his letters and cutting. No tactile sensitivities that I can see when using squishy, wet stuff, although most of his art projects involve coloring, cutting, and drawing, which are definite areas of need for him. We have fat pencils, grips, etc. but that doesn't address the sensory piece. Right now, he's allowed to move when he needs to, will go outside with aide for a couple of minutes to calm down (something about cleaning up just drives him up a wall), and is allowed fidgets.

Early development: always more intense, but hit developmental milestones on or ahead. Good sleeper, good eater, aggressive and problems controlling himself in playgroups and at parties and gatherings since he was old enough to walk. We never felt that we could let him out of our sight for a second, and still don't. Absolutely hell-bent in doing what he wants and will relentlessly go after anything of interest. Babyproofing was ridiculous and largely ineffective because he was so damn clever in outsmarting the locks, doorknobs, outlet covers, etc.

He has bombed out of two pre-schools, has had observations done, gone through a 6 week intensive therapeutic playgroup, 8 hours one-on-one with a child psychologist, and 90 minutes with a child psychiatrist (hence the drugs). Possible ADHD is all he mentioned, and because of his age, that's about all we've got.

I do think he's having a growth spurt because he's really eating a lot, and he's had a cold and/or asthma since school started, with only a week here and there where he is completely free of symptoms.

Sometimes, I just feel like I'm too old for this S---, ya know? This is round 2 for me and it's almost harder than round 1 (my own kids) was. I'm tired; going to bed.

 

[soapbox]

Developmental Coordination Disorder (DCD) resources... good current site: CanChild Centre for Childhood Disability Research

Doesn't exist is one theory. "They grow out of it" is another.
Don't try to tell that to my difficult child. Or to me. WE know what its like to LIVE with it. With or without diagnosis.

Whether Occupational Therapist (OT) therapy helps or not... is more up for research.
Interventions and accommodations... are absolutely vital for fine-motor issues... whatever works, from technology to voice-recognition to a note-taker/scribe to alternate-format exams (oral, multiple-choice, etc.)

 

[HMBgal]

Developmental Coordination Disorder (DCD) resources... good current site: CanChild Centre for Childhood Disability Research

Doesn't exist is one theory. "They grow out of it" is another.
Don't try to tell that to my difficult child. Or to me. WE know what its like to LIVE with it. With or without diagnosis.

Whether Occupational Therapist (OT) therapy helps or not... is more up for research.
Interventions and accommodations... are absolutely vital for fine-motor issues... whatever works, from technology to voice-recognition to a note-taker/scribe to alternate-format exams (oral, multiple-choice, etc.)

I believe it exists, and I remember so many stories of adults that have lived it with all their lives.

 

[HMBgal]

Big days for the grand-difficult child. He had a great weekend and got to go on a boat ride. Back story: in July, we went hiking. The deal is you hike to the end of the lake, then a boat takes you back. Sounds fun, right? difficult child obsessed and was so upset that we got halfway there and had to turn around; there was no way he was going to get on that boat, so we had to hike back.

We didn't make a big deal about it because we didn't want him to feel bad. Fast forward 5 months. We live near the coast and live across the Coast Highway from a small, working harbor. A boat was recently restored, a beautiful wood boat from the the 30s that holds about 18 people, and they give harbor tours (and go out into the open ocean) on weekends when the weather is nice. The harbor merchants were hosting a small ice rink (not really ice, but rather white slippery plastic stuff that looks like ice) for just this past Saturday. My daughter and the kids and my husband decided to meet up at the "rink" and have a fun outing. Well, we got there first and the "rink" was small, crowded, and I wasn't sure the kids would dig it too much. Since it was such a beautiful day, my husband and I went over to the pier to see if the Irene was giving tours, and they were. I called my daughter to see if she wanted to do the boat tour with the kids, and she jumped at the opportunity.

When difficult child came walking down the pier, he looked pensive, drawn in, a little upset, and I thought "Uh oh. We not only suddenly changed plans on him, but we are asking him to do something he's really afraid of." Well, he met with Captain Pat and his wife, looked the little boat over and climbed aboard. He looked awfully worried when they started the motor, but in a quiet little voice, he said "I think I like this." Captain Pat and wife were so very kind. It was just our family on board, so both kids (difficult child's sister is 3) got to ring the boat's bell, and difficult child even got to steer the boat! And when we got out into open water, there was a pretty big swell and water splashed in. I thought he would be afraid, but not at all. We saw an otter, seals, pelicans, and this little boy had a remarkable day that wouldn't have been possible even a few weeks ago. Pure magic is what it was.

He also stayed in school all day today for the first day with only one incident (he kicked the school bully at recess...I guess I should be upset, but I'm not really), the school hired a wonderful aide--a newly minted multi-subject elementary teacher that will stay his aide for this year, then will be hired as a teacher next year. He will now being going from 90 minutes a day at school to the full schedule. We are concerned that 8:30 to 2:40 two days a week are awfully long days, and the other days are until 1:10. It will the first time in the whole school year that he will be attending the entire time. Fingers firmly crossed.

We went to the child psychiatrist today for his "medication check up." We discussed stuff for about an hour and the doctor says he seemed better, and he was a charmer today, and while it seems to be 2 steps forward and 1 back, it is progress, I guess. We are concerned that he's lost 3 lbs. in 3 weeks, and his blood pressure and resting heart rate are kind of high (BiPolar (BP) 133/83, and heart rate 96). Hmmmm. The doctor wasn't concerned enough to take him off Concerta, but we have to go back in two weeks to recheck because there is a level of concern there.

That's all the news that's fit to print from around here. Hope you all are holding your own. This is always a hard time of year for our family. It's when I really miss my son, who died in a car accident at 17 years of age in 1991, and we lost a grandson, born with Down Syndrome in December of 2008, and his heart malformation was so severe that he only lived a week. Sigh. Lots to be thankful for, though, but my heart just kind of hurts in the quiet moments.

 

[InsaneCdn]

Stims often affect appetite.
We've had less of an issue that way - but in the beginning, I was "careful".
We made sure that both kids (both are medicated for ADD/ADHD) always got food that was "loaded both barrels"... that is, high in food value AND high in calories. So... things like GORP (good old raisins and peanuts) became regular snacks, dried fruit, real butter, homemade ice cream, fruit pie, full-fat cheese... They could have whatever they wanted, as long as it met the two rules... high in food value (which cuts out candy!) AND high in calories (no rice cakes!). OK, if it was super-high-food-value, we'd bend on the calories. (more veggies? sure. hungry for a banana? that's fine too - but popcorn was only if you'd already eaten very well that day... just not enough calories OR food value!).

For some kids, they find it also helps to reduce (not eliminate) the dose for the weekend... and allow them to catch up a bit on appetite and calories...

 

[HMBgal]

Stims often affect appetite.
We've had less of an issue that way - but in the beginning, I was "careful".
We made sure that both kids (both are medicated for ADD/ADHD) always got food that was "loaded both barrels"... that is, high in food value AND high in calories. So... things like GORP (good old raisins and peanuts) became regular snacks, dried fruit, real butter, homemade ice cream, fruit pie, full-fat cheese... They could have whatever they wanted, as long as it met the two rules... high in food value (which cuts out candy!) AND high in calories (no rice cakes!). OK, if it was super-high-food-value, we'd bend on the calories. (more veggies? sure. hungry for a banana? that's fine too - but popcorn was only if you'd already eaten very well that day... just not enough calories OR food value!).

For some kids, they find it also helps to reduce (not eliminate) the dose for the weekend... and allow them to catch up a bit on appetite and calories...

I loved it when the doctor told him that he has to eat even though he doesn't feel like it. difficult child looked at him like he was nuts (as did I). We did find power smoothies (Odwalla makes them, but unsure of availability elsewhere) and those are caloric, yummy, and loaded with good stuff. Awfully expensive because whatever I buy for him, must by for baby sister,too. As for lightening up on the dose, that would have been easy when he was taking two 18 mgs, but the doctor just prescribed the one larger dose and they can't be cut. We'll keep after it and make sure he piles in a good breakfast and allow him to eat dinner later. He's a sturdy fellow: mesomorph without an ounce of fat on him.