AD(H)D, how do you know if it is right diagnosis, before trying ritalin?

[galwaygal]

My son has been diagnosed with Dyslexia with high intelligence, and now attention deficit disorder inattentive type.

The doctors want to try ritalin, but I am concerned that the ADD is more a symptom of the frustration of the high intelligence combined with some reading issues, rather than strictly attention deficit disorder.

I am worried that if I start down the trial of medication, that if the ritalin does not work, we will be down the route of trying more different medications. On the other hand if it is attention deficit disorder, am I being cruel holding off on the offer of ritalin, in case it really does make a difference.

I am reluctant to give the medication but am not convinced by the doctors yet that they really understand my son's issues, especially when they said yesterday "well if you don't take the ritalin, then there is really nothing else we can do for him, so not sure why you are here"

Any experiences on how others have dealt with the ritalin/no ritalin dilemma, gratefully recieved.

If you are not convinced yet that the docs really understand your ds then it seems quite sensible to hold off with any solutions until a more accurate picture becomes clear. Is it Developmental Paeds who are telling you this? Surely they can keep your ds on the books and review in three months' time?

Dyslexic kids commonly struggle with working memory and when they are not receiving well targeted teaching using appropriate methods, can really struggle to focus. If work is too hard kids can sometimes act out and distract themselves and others from the issues they are having with learning, especially when difficulties have been going on a while and self-esteem is being affected. When was Dyslexia diagnosed? Was working memory thought to be low as part of his profile? What has been put in place since? Is it helping?

DS has adhd on the hyperkinetic side of things. He is on equasym XL just small dose and I am really glad I gave it to him even though it was with mixed feelings at the time.

It has helped his concentration immensely.

It is a mixed bag of feelings I know about giving our children meds. But a trial is just that and you cans stop if you feel it is not working :) I give DS the meds during school days and not at weekends unless there is something we have to go to that would increase anxiety. His lasts 8 hours and then wears off completely so you can stop giving the meds quite easily if you are not happy with them.

DS health is monitored closely and his weight and height checked to make sure he is still developing normally. After a year they usually like to give it a break and see if the meds are still needed.

It is personal choice and tbh you wont know if they will work until you do try them x they are not for every child and some have different experiences to others.

I can't really comment on how to be sure, since there was little doubt with DS1, plus we didn't go the ritalin route because of existing anxiety and eating problems.

One thing is certain, though. Firstly, methylphenidate (the active component of ritalin) is very fast acting and is also out of the system very quickly. Unmedicated adults with ADHD often self medicate with copious amounts of caffeine for the same instant stimulant effect. If you agreed to trial it (and it should be a trial very a very short term follow up) and it had no effect, then you would have the grounds for a very big told you so and to be able to request further investigations into working memory, visual processing etc if CAMHS aren't even considering those things right now.

Thank you for the replies so far, in answer to the questions, my ds was only assessed in December by the ed psych, and just before Christmas we got the confirmation of the assessment of high intelligence and dyslexia.

Handywoman - I am confused about the working memory results. The Speech and language assessment put his working memory at low average. Whilst the Ed Psych report states scaled scores of digit span 10 and letter number sequencing, as 11, with the scaled scores average said to be 8-12, (WISC working memory score of 102) so in my mind that means an average working memory. However in the written report the Ed Psych says ".. general ability in the superior range. However, significant personal difficulties are evident in working memory...." The CAMHS team that are offering the ritalin, are not willing to keep him on their books if we are not willing to take the medication, as they are the ADHD team, and that is all they deal with. So it is take the medication or go away and come back when you are willing to take the medicaiton.

Since this diagnosis was only made in December we are still awaiting to find out what the level of extra help at school will be. The school are surprised by the specific learning difficulty/dylexia diagnosis, as they were not expecting it.

Self esteem is definitely an issue, and that is a major area I want help with, so know how to help ds.

ouryve - CAMHS are not offering anything but the medication, for them it is a case of your son has ADD and medication is the only solution. I requested
referrals to Occupational therapy and for cognitive behavioural therapy (for self-esteem and other issues), but they said these were not necessary. They finally gave me the forms for OT yesterday, but said there is a 9 month waiting list to be seen and that I should try the meds in the meantime. I just felt dismissed by them, they are not listening to my concerns in the slightest. One problem is that my ds has/had eating issues and I am concerned that the ritalin will make this a big issue again. But I guess I could try to work around it. Can I ask what alternatives to ritalin you have tried?

coff33pot - your story is very positive, my son has hand flapping when excited and a need to jump around after sitting still for a long time, but not generally hyperactive. All my experiences of people who have taken ritalin have been those who have the hyperactivity, and I suppose I am finding it difficult to get my head around the fact that the ritalin is not for hyperactivity but for attention deficit.

I clearly have to really consider taking a trial with the ritalin for my ds.

Hope you don't mind me bookmarking thread, there is talk of my DS1 going on Ritalin when they formally dx ADD. I am really not sure about it but DS, 14, really wants to see if it will help him, struggling with concentration especially with school work.

I am having trouble too getting in my head too that its for ADD not hyperactivity which DS definitely does not have. Fidgety but barely moves off the sofa at home!

We went straight to the second tier of the protocol and DS1 takes atomoxetine, which works in a different way to methylphenidate, doesn't give the peaks and troughs because it has a long half-life and doesn't affect appetite as badly. He has ASD and hyperkinetic and oppositional ADHD, so his overall profile is quite different to your DS's, though. We saw an increase in focus (and improved language and communication skills) long before we saw any reduction in his activity levels. (he is currently sitting as still as he ever sits - he has maintained a position on the corner of his chair with one foot up on it for a whole 30 seconds before shuffling around for another 30 and finishing with a foot on top of the TV cabinet - he's only stayed on the chair because the computer's in front of it! :o)

Ouryve that sounds a bit like DS, ok he doesn't move out of the chair/sofa much but there is always a laptop right in front of him. The nurse practitioner who we saw yesterday commented on the fact that while me and DH sat almost completely still, DS was hand fiddling, foot tapping etc all the time.

Now I am not against medication for ADD, but I disagree with the idea of accepting a trial of medication on the basis that you could then say 'I told you so' if it doesn't work. For one thing it might well be ADD, and the meds still might not work, so it would prove nothing at all.

The onus is on the health profs to make sure the child's strengths and difficulties are truly understood by everyone (parents and health profs alike). I get the impression that the OP does not have full faith in the clinic docs in this regard, and if they are putting pressure on (ie saying either accept the meds or take a hike) then she might well be right to feel like this because no docs should every put this kind of pressure on. If the OP has this gut feeling (I might be wrong) she should act on it, the question is how...

I would probably request referral to another doc or go back to Paeds for an overview of all issues (perhaps with further consultation from school staff and Ed Psych, since the working memory issue is unclear) before doing anything further. Whatever happens next, the OP as parent needs to be fully on board and confident (as confident as one can be about commencing stimulant medication) about next steps. That's the least she can expect from NHS staff.

Hi Galwaygal. I have a similar thread where I have just taken my DS off Concerta which he was taking for ADHD inattentive type. He had 10 months on his meds and now we are seeing how he is off it. I felt it was worth a try to see if it made a difference rather than waiting until he is 18 and wondering if the meds could have helped him academically.

Are you based in UK?? I would be interested as we have been with a CAMH's both here in England and in Ireland.

Methylphenidate will either help, or it won't.

If it helps, does it matter whether he has 'proper ADHD' or just traits?

If it doesn't help, has he lost anything by having tried it?

(it's helped a lot in this house, so I'm a bit biased)

inattentiveness is often mental hyperactivity, the child stays still but their thought processing goes off on an internal bouncing-wander-about.

Mareea that is what DS attentive issues are. He will sit still but talk non stop on a particular subject and wont budge once on it etc. Focus on work but then look up wandering off due to visual auditory (things catching his eye) that brings out the curious mind rather than focusing on the work infront of him. Impulsive decision making is another as his brain wont give him time to stop, breathe and think things out properly.

Like I said it works for some but not others. Once I was told it wears of out of the system quickly I was more willing to try it myself at the time.

Starfish - we have to ration the computer time. Much more than an hour in one block and he bounces all over the place, afterwards. (he exploded spectacularly after his home time hour, this evening - the joys of book day)

A medication trial can sometimes be used as part of the diagnostic process, in cases where there's uncertainty. Methylphenidate won't work if the patient doesn't have adhd, and will in fact make symptoms worse. So if you try methylphenidate and it's effective, he has adhd, and if not he doesn't. And as others have said, immediate release Ritalin is in and out of the system in a very short time so it's easy to stop straight away if there are problems.

Streakybacon - can I ask how quickly the result should show that there is a good effect and therefore confirming it is ADHD , and conversely how quickly can it be seen that it is not working? I read that getting the dosage right was difficult and assumed that this process was not clear and that it would not be immediately obvious whether it is working or not.

If it was as simple and clear cut as a short trial over a few days/weeks I might be more convinced to try it. But if it was going to be months of altering dosages etc I would not be as happy.

Can you give a bit more advice on what should be seen to confirm it is /is not right for my son? Thank you.

Tbh a lot depends on the consultant psych and how they prescribe. I've heard of a lot of NHS practitioners who rush in with a 10mg starting dose which can be too much for some children. Our (private) psych started ds at 5mg and we monitored carefully for any signs of adverse effects and only when we were confident that he was not experiencing difficulties did we increase to 10mg where we began to see benefits.

If it's working, you should see improvement very quickly, as you would if it wasn't. But it's hard to say specifically what you should look out for because it depends on your son's personal presentation. Eg my son is still very poorly focused but he's not bouncing off the walls and losing his temper as readily as he once did. Different children have different problems within their ADHD, and the medication will address them differently too.

Bear in mind though it's not a miracle drug and it won't take the condition away altogether. There are limits to how beneficial it can be. Realistically the only way to find out if it works for your son is to try it.

I'd try to persuade the consultant to start at a very low dose to begin with if you're cautious. A good doctor will give you lots of written information about the alternatives so you can read up and make the decision that's right for you and yours. Don't rush it, ask lots of questions, and be aware that you will have to tweak the dosage frequently as your child changes. Puberty, in particular, isn't pretty with ADHD and it's hard to tell which behaviours are due to hormonal changes or meds being ineffective. 'Tis a minefield.