ADD
Ratched -- Tuesday, October 01, 2002 -- 01:21:30 AMAttention Deficit Disorder and all that comes with it. Adult or Child, yours or someone else's.
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Congratulation, ITR! I'm so glad you're finding the Concerta beneficial.
Thank you, Marsie! I'm very encouraged by the lack of side-effects. I've also not had any mood swings, usually a daily thing. It remains to be seen how effective it is for executive function, but have noticed a slight improvement in concentration. How is your daughter? Have you heard of increased hostility with stimulants?
Actually, C. is quite oppositional when her meds are not on board, so there has never been any increase relative to medications that we can perceive. No one has peace around here until the concerta kicks in. We have to catch ourselves asking (as she rants and screams), "Did Daddy (Mommy) give your your pills yet?"
I'm fairly certain I wouldn't have been diagnosed as OCD or CD, and no-one noticed the ADD, even though I had the classic symptoms seen in girls; the awareness wasn't there. Hopefully C. will fare better. I really believe it makes a difference to medicate during the learning & growing years. Today I might even be happy. Not sure - forgot what if feels like.
The learning issues we hope will be minimized by the early diagnosis. She just got her first graded report card-all As and Bs with one C+ in math. It was a great relief that reading is one of her A subjects. It was also fascinating to watch her sit down and write a page long character report one Sunday. I never believed she could accomplish this much a few years ago.
My brother, who is 27 and a college student, almost certainly has ADD. (He was hyperactive as a child, but isn't now.) He is having trouble in school, and I think that if he could get an official diagnosis and maybe some medication, it would do him a great deal of good.
The problem is, he has no insurance and very little money. Any ideas on the best way for him to get a a reasonably cheap diagnosis?
He may be able to at his college's health center, if they have mental health services. If not, they can very likely refer him to doctors and agencies in the area with sliding scale fees.
There is no health center, unfortunately. It's a community college.
Janey, check to see if the CC has any disability testing. The ones I have worked at are very desperate to increase retention, plus the ADA act should require some degree of accomodation. They should bend over backwards to keep his butt in school.
Maybe a local hospital or county health services can give a referral to someone with a sliding scale.
And if there is a center that does disability testing, they may have referrals available as well.
Any willing MD can legally prescribe the drugs, but I would want a psychiatrist, myself.
He checked with the disability people, and they don't do any testing. He says they weren't very helpful. Maybe I should try them and see if I get the same results.
So can any doctor give him a piece of paper that says "This guy has ADD"? Because the main thing he needs is something to show the school so he can get accomodation.
Janey, see if there are any studies being done on adults for ADD and ADD meds. They give meds for free, usually pay a small stipend and your brother would get many free medical visits.
He should really check with the office that makes that determination about that. Any MD can prescribe the meds, but school might have its own rules about who can make a proper diagnosis.
We've been struggling with my son and med side effects. He's almost 10 and was diagnosed with ADHD about 3 years ago.
When he was first diagnosed with ADHD, he was put on the lowest dose of Concerta. Worked great. About 1.5 years ago, we increased the dose because he was having problems at school. It helped as far as that goes, but after several months, we saw the sleep problems get MUCH worse. So we tried Adderall for a while. Didn't help with the sleep, and the appetite issues were worse. He lost a couple of pounds, and he said his stomach hurt sometimes, which didn't happen with Concerta.
By the time we'd done all this, almost a year had passed since he was last on the low Concerta dose, and we have noticed that he does a lot better on days he has no meds than he used to--weekends mostly. So we thought since he can focus and control himself a little better, maybe the low dose would work again. So we went back to that a couple of months ago. School going mostly OK, sleep still a problem but less of one than on the higher dose.
Which brings us to now. He's been on no meds all week, because it's spring break. I don't think he's gone med-free for this long, while maintaining a fairly "normal" routine, for several months. Since last summer probably. Christmas and Thanksgiving break tend to be sort of a-typical because my husband and I are off some too, so we sleep late, etc. But this week they've been going to day camp, getting up early, etc. I should add that his orginal diagnoses flowed out of problems he had at summer day camp--impulse control, fighting, etc. So we typically gave him meds during summers when he was in camp and such. Over the past several months we've found that he often does OK without in those types of situations.
Anyway, this week he's sleeping great! He hasn't slept this well, or gone to sleep this easily, in YEARS (if ever). He gets up without much of a fuss, and his general attitude has been great. Isn't it FUN to be well-rested?
I'm not sure he's quite ready to go med-free for school. He had a couple of totally unproductive days at school the week before break, one of which was a day we forgot the medication. (oops!) But I'm wondering if maybe using Ritalin, which is the same drug as Concerta, would work. The regular kind is listed as 4 hours, which wouldn't be a full school day, but it might be enough to kind of get him in a groove and get him focused. Based on how much Concerta keeps him up, it seems to say in his system for a good 14-16 hours as opposed to 12, so he the stuff seems to linger in his metabolism pretty long. And I think if we could get him enough sleep, that would help a LOT. His "oops" non-med days recently haven't had that going for them.
Of course, multiple doses are an option, of course, but I'm not sure I'd want to go that route (the whole taking a dose at school thing). I see there's an extended release form of Ritalin that's 8 hours. That might be an option too. But I'm really wondering if, given his lingering Concerta effects, a 4 hour Ritalin wouldn't last more like 5 or 6 with him, which would get him through the school day, pretty much.
We'll be going back to the doctor in a few weeks, so we'll discuss all this with him, of course. But if anyone here has any thoughts/wisdom on this, I'd be glad to hear it.
Has your doc suggested Focalin or Focalin XR?
It's a refined version of Ritalin, which is an isomer--a molecule with a mirror-image molecular structure. Focalin has had one of these structures (the left? can't remember) removed, which results in reduced side-effects while retaining the stimulant effect of methylphenidate (Ritalin). Comes in several extended release doses, and also in non-XR form.
Some additional info here:pediatrics.about.com
Cal, it kicks in pretty quickly. He normally takes it right before leaving the house. We live 20-30 minutes from school, so we could give it to him just as we pull up at school to give him a little more "on" time at school.
I'm not familiar with Focalin, Mayimadom. Thanks for the link--I'll ask about that as well.
Sadie, is your ped handling the medication, or do you have a child psychiatrist?
My experience is that peds aren't as well-versed in dosage and the variety of different AD/HD meds on the market, and less attuned to side effects like weight loss and sleep problems. I would recommend that you find a child psychiatrist who can change the meds to help the sleep problem.
Sadie, he's not taking generics, is he? The generic Ritalin had awful side effects for me and was nowhere near as effective at the same dosage.
Why not try the 8 hour Ritalin? (Is that the LA?) I've been taking the LA for a couple of years now and it lasts a little longer than 8 hours. Haven't tried Concerta, but have heard from my ADD doc that the two have different effects for some people even though they are based on a similar chemical formula.
I'd second Shira's recommendation to find a psychiatrist that specializes in treating ADD patients. They have more experience in dealing with the varied effects of the different ADD drugs.
He's not on generics. AFAIK, there is no generic Concerta yet.
We're seeing a pediatrician; as it happens he has a child with ADHD which I suspect makes him more on top of certain details than the average ped. I also suspect if I wanted to get in with a psychatrist, it would take a while. I'm skeptical that it would be worth it, frankly. It seems like the reactions vary so much from person to person that all you can really do is try something and see if it works.
It also makes him more inclined to imagine that your experience and your kid's experience is like his kid's (and his) experience. It's human. All the more reason to see a specialist.
It's true that there is trial and error, but my experience with psychiatrists versus pediatricians is that the former's trial and error is more educated.
Sadie,
Does he need the medications for homework time after school? If so, Ritalin plus a second dose at lunch or after school may be the best choice. My daughter did poorly on both Adderall and Focalin, mostly aggressive and really cranky as the meds wore off. We use Concerta and give her Melatonin at dinner to help with sleep.
I don't doubt that it is. But weighing that against the wait to get in as a new patient, the fact that the current doctor knows my kid's history... I'm just not sure it's that much of an advantage.
Marsie, at this point he doesn't have lots of homework, and he usually does it in right after school in the after-school program. I'm not sure how he'd do if he had to do it with worn-off meds. Before he was on meds at all, homework took longer, but he was also younger then. He has improved a lot on the self-control front, so he might do better now.
Sadie,
Your circumstances will be unique, of course, but you can maybe skip the psychiatrist and see a neurologist instead.
Ours checks weight and development at every visit, which the shrink did not do. Also, the shrink had no more help to offer beyond medication and confirmation that anxiety played a role (which I had already figured out--nice to have confirmed, but inessential). We're better off, insurance-wise, seeing the neurologist, who is well versed in this area, and who was able to test for and rule out other neurological problems when we first saw her.
I think YMMV a great deal in this area. Our university psych department is OK with ADHD, but neurologists won't touch it (and the only pediatric neurologists here are associated with the university). The largest practice for ADD is headed by a child psychiatrist who has severe ADD himself, so he tends to drive people bonkers. His nurse practitioner is awesome and extremely well educated, plus he reviews all of her visits, so seeing her is our choice. My own employer sees alot of ADD, as do two other practitioners in our office, but frankly, none of them are objective about C. so we decided to take her care off site.
Really? So much for a psychatrist being more attuned to weight lose.... Our ped always checks weight, BTW, and he's actually the one that noticed he lost weight on Adderall. I had observed that he was eating less, but honestly I don't know his weight to the pound from one month to the next.
Do you see a pediatric neurologist or just a regular neurologist? My daughter had to see a pediatric neurologist when she was an infant, and I hated that woman--she was awful. We have a few other pediatric neurologists on our insurance, and I think one of them may have been the one who diagnosed the son of a friend of mine years ago. I could probably get in touch with her and double-check on that.
Okay, this made me laugh. I'm now picturing my son as a psychiatrist, bouncing around, sending toy cars rolling off tables, target-shooting with his Nerf darts.
By the way--
this is totally unrelated, but I'm suddenly thinking about my son's pulmonologist, a great guy by the name of Jacob Nutman.
We started seeing him maybe a year or two after moving to NJ. My son had always been extremely vulnerable to respiratory infections. He would get sick and stay sick, and we could never really get a pediatrician to acknowledge that he was too sick, too often. He often had to stay home from daycare or preschool. He would cough all night, or until he threw up. At the age of two he he had spent a week in the hospital with pneumonia.
Did he have asthma? Hmm, well, we think he has "reactive airway disease." See if this antihistamine helps.
When we finally got to Nutman, he took stock of my kid, who was by then suffering from too little blood-oxygen. With a great deal of seriousness and a slight air of disapproval, as if to wonder what had taken us so long, he pronounced the obvious: "This child is very sick"-- and yes he did have asthma: a 'cough variant' of the disease that affects about 20 percent of asthmatics. I felt vindicated, and he quickly understood what we'd been through. From then on, he made sure my son's health improved. We could call him at any time; he was always there for us (and, we would eventually learn, for everybody). This was the first time our situation had been taken seriously.
At one point, after nearly a year of treatment during which the asthma became controllable, my son's sleep apnea became almost constant, and so we took him to an ear-nose-throat specialist. He, like Nutman, had come highly recommended by our regular pediatrician's nurse, whose own child had had chronic problems requiring multiple surgeries. After a brief examination the ENT said he saw lots of kids who might or might not benefit from surgery, but that ours seriously needed his tonsils and adenoids out because they were chronically infected. I already suspected this was true--my kid had become a walking antibiotic resistance factory by then, and I caught 3/4 of everything he caught.
But of course, putting your four year old under the knife is not done lightly, even for routine surgery. So I consulted Nutman. What did he think?
Well, he knew the specialist in question. This guy, he said, "would take your tonsils out if the diagnosis was prostate cancer." BUT he was an excellent surgeon, Nutman assured me, and he was probably right. Our son should have the surgery. It might well minimize or even cure his asthma. "Do it," he told me, "and don't look back."
We followed that advice. As promised, the surgeon was first rate. So was the hospital. Our kid's appetite pretty much doubled, and I mean within hours of the surgery. He grew, his asthma declined dramatically, and his health improved overall.
I dislike doctors in general, but have always liked seeing Nutman. He was a former asthma researcher and remained very interested in the science. Spoke four languages. An Israeli war veteran. He didn't believe in parents scolding kids too much--he'd get on my case for demanding my son say "thank you" for the lollipop, or for insisting that he behave himself in the office after Nutman had riled him up by tickling him or faking him out. (He would make a sudden move, as if to launch a tickling attack, but then scratch his head instead. "Wha-a-at?," he would say, to my laughter-convulsed kid, all false innocence and guile.) "It's ok, mom," Nutman would say in his thick accent, giving me a certain look to drive home the point that children need not be expected to be idealized creatures in his presence. It was a gentle upbraid; kids shouldn't have to say 'thank you' for everything, he said; he thought we owed them whatever we could give them.
His attitude, admittedly quite unlike my own, was a kind of relief.
He was in his mid-fifties, I think. He had a family back in Israel; he and his wife had divorced amicably when he decided he wanted to come to the US. He had remarried and had a son the same age as mine, with the same name as my son's. They lived a few towns over. I kept thinking I ought to invite him and his family to dinner some time.
My son will be ten in August and has been having pulmonary checkups only every threee or four months. His asthma had become an increasingly minor distraction and his pulmonary function was usually normal. A couple of months ago we received a letter out of the blue saying that Jacob Nutman had died.
He had been fighting cancer for most of the last year, but had been indefatiguably committed to his work. His nurse practitioner told me he had refused to stay away from the office, even after major surgery, even during chemotherapy. At the end, he went from the office, where he was treating kids like mine, to the ICU. And from there he went home to Israel to die. I had planned to attend his memorial, but had gotten sick myself and couldn't make it. Apparently, it was mobbed; there was no place to sit or stand.
I wept on and off for days. We never even knew he was ill.
I'm now picturing my son as a psychiatrist, bouncing around, sending toy cars rolling off tables, target-shooting with his Nerf darts
Well, the man is about 50, but you get the general idea.
Mayimadom, I'm sorry about your loss.
Thanks for the input, everyone.
My son is in 4th grade, and once they're done with their high-stakes tests, which they did in late March, the school pressure goes way down. So we decided it was worth trying week or so without meds (if it becomes a disaster, we won't do the full week), just to see how he does without meds and with sleep. If nothing else, that will give us a better idea of what we need medication to accomplish. Today went OK.
School gets out very early here--they only have 4 weeks left. And he really does fine med-free at day camps and such now, so we will probably wait until August to start trying anything else. Once they get to the last couple of weeks of school, things are so out-of-routine that it's hard do assess how things are going. We ran into this once when we started adjusting meds before Christmas--total waste of effort. We will be due to see the ped again in a few weeks, so I will discuss all this with him of course.
Just giving this thread a bump, and cross posting with something I originally put in the X-treme parenting thread.
Just checking back in.
We've had A on Ritalin for about 7 weeks now, and the difference has been amazing. He's still essentially himself, but just a tad slower. Will help rather than get frustrated, will complete tasks without arguing and seems so much more at ease in himself.
To be honest, I'm not sure we realised just how bad things were until they weren't problems anymore. It's like waking from a bad dream and realising that this isn't how things have to be.
I can't count the number of times over the last month where either my husband or I have said something like 'this is what having kids was meant to be like'.
The only down side is that he's grown 1cm, but lost 2kg. The suggestion to help counteract this has been to make him a smoothy after school that's fortified with toddler formula.
I'm tending to give him one with 1/2 banana, handful of strawberries (or other fruit), small tub of yogurt, 1/5 cup of milk, scoop of ice-cream and 2 scoops (like in the container) of toddler formula. Blend and serve.
Does this sound ok? He's drinking it without complaint, so hopefully it'll do the trick. Has anyone else had a similar problem?
C. takes Concerta at a relatively high dose and has grown normally, even through adolescent spurts.
The smoothie sounds great, but any calories would do it. I had to learn to be cool with late night requests for food. I have to put some controls on it, lest she just use eating as a reason to put off settling down, but C. can eat a meal's worth of calories at bedtime.
Offer protein at breakfast and snack time. C. likes black beans and rice, a quesadilla, a particular lean cuisine, etc.
Sounds like we're on the right track. I'll just keep making the smoothie with the protein boost, and if I can keep his younger brother (who's anaphylactic when it comes to eggs) away, I may even try and give him eggs for breakfast.
I'm loathe to change meds right now, as the success we've had with the Ritalin has been outstanding. He's doing so well on it.
As a side note- with all this going on, we've realized that DH is probably ADD as well. We've found a psychiatrist in Melbourne who specializes in adult ADD, so it will be interesting to see what comes of that.
It's been like a light at the end of the tunnel moment for us as all these things start to click, and we realize that as a family, we are starting to do more than simply cope.