ADHD MED’S ONLY WORK FOR A FEW MONTHS!!!HELP WHAT NEXT...

[Cosmo74]

DS (7 1/2) has been on ADHD medication now coming up to 2 years but every time he gets the medication it works for a few months and then he seems to go back to hyper etc...again and getting himself in trouble...he started on strattera which only worked for a few weeks, they uped the does and it work for a few months, he was then put on Equasum (sp?) which worked but each does would wear off within 2 hours he was put up to 3 doses of this a day but it wasn?t working ? he was then put on concerta again worked for a few months so now he is on Concerta XL 18mg ? he has been on this since May this year and it was working great ? we really thought that he was sorted and had a great summer and a great start to the school year ? I was thinking that finally I won?t feel at the end of school year that I was the teachers best friend!! But we have noticed the last few weeks at home that things were started to get tough again ? we thought that maybe we need to get tougher with him and maybe we were letting him away with things ? but now we have to go and see the teacher today to discuss his behaviour at school ? so obviously he is the same at school. What is our next step back to doctors to change again?? How long does it take to get the right medication or is the medication not going to work for him and what do we do now. I am just worried that as he gets older he will be more difficult in mainstream school and they will try and move him out of mainstream education.
BTW we tried the diet changed and parental changed for his behaviour before we tried meds but nothing seemed to work and both DS and both parents just ended up very stressed and unhappy.
Any advice ? Thanks in advance from a very worried Mum.

Cosmo, I didnt want to leave your post unanswered. I have no special expertise but can sympathise!.
My Ds has just turned 8 and has ADHD/LD/ASD. It is very difficult isn't it as parents? A constant battle and worry.
On the medication front - yes speak to the paed, just in case he needs a dose change (27mg is newly available).
I always found Ds got worse as each term progressed and it takes a few weeks of holiday with very vigilent parenting to turn things around. He seems to need very clearly defined rules and boundaries and immediate consequenses if he breaks them (after a reminder). At school he cannot have the vigilent external reminders of rules especially in the playground so the internalised rules slipback a bit! The more trouble he gets in the harder he tries to get attention and approval often choosing inappropriate methods . It starts a downward spiral. Sorry to waffle!
What is happening at school and what are they doing to support your son? Do they understand his needs (ie in my sons case , reminders of rules and immediate consequenses). Does he have a contact book?
Oh dear sorry so long and waffly!

Hi my ds1 is on concerta xl on a 36mg dose, which certainly helps.Ds1 has been on this now for two months. I dont feel any medication should be long term. I also have ds2 ASD/ADHD/LD with he is on respendal which i think is just kicking in.I didnt make the decision lightly to put him on this and had tried strattera which didnt work at all for him.He is aggressive and very anxiuos all the time. To the point i cant take him out its that bad. Again i dont think should be a long term solution and worry about what else we can do but have tried everything. He has a behaviour teacher and also a socail communcation teacher go into to school to help.Ds1 has no behaviour issues so will look in a year or so time to take him off,at the moment its to help him focus as hopefu;;y he be doing his eleven plus next year as he is extremly bright.

The school have not done anything this year - he started on concerta in the last term of last year and since then he has been fine. He has a behavioural officer who came in the last 2 years and one of the year he got a classroom assistant to help his - but she was only there for 2 days a week and it only lasted for 3 months - then she had to move on - not enough sn assistants!!! the behavioural officer did advice the teachers on different techniques to use with him some worked and some didn't - so far this school year we didn't have to worry about it - I am afraid that they are going to go down the road of saying that he cannot stay in mainstream education - he is very bright and when he works his work is up to standard for his age - he is not the brightest in his class but has always got higher that above the average which we are happy about cause if he is getting that now and he is not 100% concentrating when he settles down he should do a bit better - sorry waffling now.

My heart just goes out to him - i do not want to go back to what it was like a few years ago when all he seemed to do was get into trouble and he seemed very unhappy then which left us very unhappy for him and very stressed.

magic5 - i would love to think that his medication would not be a long term thing but also know that without it he could not cope socially and would not get the education he needs - he already had problems making friends and as they get older - people who were his friends are starting to not want him around so much - we didn;t make the decision lightly either I don't think any caring parent would - we research everything about it - don't know if that was good or bad!!! - but for DS sake we knew we had to give it a try - when it is working he seems alot happier because he is not getting into trouble and we as a family are alot happier and can do alot more family things together without the stress and worry of what others are going to think about us.

his next review with paed is in jan/feb willmaybe see if we can get it brought forward a bit and have a chat - don't know if they will be able to up the dose - that will depend on his weight and height!!

I love him so much and just would love him to be happy in himself and not get into trouble

Does he have a statement Cosmo?

Cosmo does your son have a statement? Forgive me if you know all this. Statements are very hard to get for bright kids with Adhd I gather (Ds got his for his LD but I had to fight for that even though he now falls within the severe LD definition). In our area the policy is to try and educate all in ms. What I'm trying to say is that there are a whole lot of steps (to which your Ds may be entitled) to try and support dcs in ms. Surely your son should get classroom support before anyone would be allowed to consider special school. Special schools are desparatly hard to get into!
Yes ofcourse the dose is up to the paed to decide, but there was a problem with having no in-between dose of Concerta (18 or 36mg only).
IMHO we parents of sn children end up doing our own research, gatecrashing courses, reading everything we can get hold of, to do the very best for our children because there is so little support and guidance out there.
I read yesturday that Dame Susan Greenfield (I think Ive spelt it wrong) the neuroscientist is to ask for an enquirary into causes of ADHD and its management so perhaps there is hope of help in the future!
Hope your meeting goes well with school!

We got the day wrong meeting is on Monday - DS does not have a statement - we had a big fight to get a behavioural officer to see him - and she only got an assistant for him for a while - cause he is not a priority!!! and they are lacking in staff and funds to cope with the amount of sn assistant - so they have to spilt them round all the children. She was a real help to DS and his teacher at the time but when DS settled on other medication they never spoke about the need for the assistant again - his teacher last year a few times said that he could do with the help but never really followed up for it. I think it all depends on the teacher as well - his Primary 2 teachers was great and really pushed for everything and for all the help - that was the year we finally got a paed. assessment as we had waited for over 18 months for an assessment. I am afraid that if the teacher he gets isn't willing to put in a little effort or willing to ask for help - he will be left to one side and then his work will start to deteriate (sp)

How do I go about getting a statement - the doctor never actually give us a dx letter - but she did give me a letter to give to my GP to say he could go on the meds - Is this a official DX or should I get a letter? i did ask one day about an offical DX and she told me they didn't really have one - if that is the case why is she prescribing him controlled drugs for ADHD - I think they just don't want us applying for DLA - I do not care about DLA I just want my DS to be happy and get a good education.

Thanks again for all your support.

You can ring up the LEA and ask them to do a statutory assessment. He doesn't need a dx but if he's been put on ritalin that would suggest that the Dr thinks its ADHD. Was it prescribed by a paed?

Oh and you don't need a dx to get DLA either. Ds gets middle rate and he has no dx.

Sorry i just re-read yourlast post. I would push the paed for a dx as this will help your case for more support.

You can ask for an assessment fron the lea if you are in England. See IPSEA web site. However you will need a lot of evidence (reports, paed, educational pyschologist your own parents statement and there will need to be evidence that school have done as much as they can from normal resourses and acted on the advice of professionals.
Normally there is a gradual increase in level of support (school action, school action plus). Perhaps Ds needs more support at school. Has he got an individual education plan?
Hope all goes well and you get the support of his teacher on Monday.

He started on an IEP in Primary 1 - they called me up to sign and discuss it regularly in Primary 1 and 2 but in Primary 3 and this year Primary 4 I haven't really been up - I know they did do one in Primary 3 and I was suppose to go up but couldn't make it that day - had a hospital appointment and they did not reschedule - I know I should have pushed more about it but was pg with DD then and going through a hard time with it - and because we were not hearing from the school regularly we thought things were settling. The only professionals he has seen are Behavioural officer and paediatrician - I think the school brought in an educational psychologist to look at him for about an hour but never got to see any report. I guess I will have to ask about these when I am up on Monday but he new teacher probably doesn't know anything about it so will have to go to principle who is not the easiest to work with - I know from previous experience - DH was going to complain about her before - that was just before DS got the assistant for himself - coincidence?? I don't think the school are giving him enough support and I know I should be pushing more for it - so both DH and I are going to insist that they understand now cause it seems that one teacher does not pass the information on about DS when he moves classes and therefore new teacher eventually finds it hard to cope with him.

Thanks again for all the help and support - it is much needed at present.

BTW we are in Northern Ireland so will try and find out who I contact over here.

Good on you Cosmo! I would write a list to ask about on Monday. Ask for a copy of his IEP if one is set up. Hope you get what you need for your son. Good luck! Magso

Forgot to mention you may have a local ADHD support group (ADDIS should be able to give you the nearest). Our local group has a telephone support line which is really helpful if you have little ones and can't get to meetings. It also runs events and will soon run courses and camps for the older kids. The newest initiative is training people as trainers to support other parents. I think support groups are thriving in pockets all over the country. I hope there is a helpful group near you.