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ADHD - Just diagnosed - any tips

79 replies

Jillxx · 14/08/2001 20:59

My 6 yr old girl has now been officially diagnosed with ADHD, she is on 1 Methlphenidate 5mg tablets 3 times a day. She has been on the tablets now since April, her attention span and willingness to learn has improved lots, also she is alot calmer but she does still have angry outbursts etc...is this usual? How do you know what to punish and what to let go? Have been checking out the internet for advice etc but there are so many differing views. If I ignore a lot of the bad behaviour then surely she will never learn right from wrong and that what I say must carry some weight as I am the Adult - although I sometimes wonder!?! Also how do I encourage my husband to believe the diagnosis?He works full time and when home does not give as much attention as I feel suits, he has not been behind me in the 4 years I have been going to different health professionals trying to find answers and now he is sceptical and believes she is spoilt and naughty and just needs stricter discipline but throughout her childhood so far I like to think of myself as having been firm but fair and consistant, I do believe the diagnosis how do I make him?Any ideas, tips, etc please forward them on as I feel very alone on this at the mo. and nervous that I inadvertantly could make things worse by not doing something I should or by doing something I shouldn't. Please help!

OP posts:
charliesmum · 21/04/2003 10:28

Its been ages since ive had the time to write a note or two on this , I wrote ages back that our daughter Ellie had just been diagnosed with adhd , we find a few weeks later that it isnt all adhd that is only the half of it she has P.D.A Pathological demand avoidence syndrome as well as the adhd and is autistic to boot as we know right at the other end of the spectrum to our eldest who has Kanner type autisim and dyspraxia ....i find that 3 of my nieghbours also have kids withh dyspraxia and autisim ....is there some sort of out brake of it ??? It seems to be every where i look these days but there is no help for parents as yet who have kids with it in our area .....how do you start up a group ???

Jimjams · 21/04/2003 16:46

PDA and ASD??? There was a discussion about this on an autism list i'm on recently and the experts said that true PDA was really really rare and you can't be both, but that lots of ASD kids are now being diagnosed as PDA and then kind of "blamed" (by the professionals) for their behaviour ie- "you're avoiding doing that" rather than "you have totoal sensory overload and need to escape"
I'd recommend the aut-UK email list- lots of emails but a found of knowledge.

I started up coffee morning for parents of ASD kids here. I was interviewed on local radio, and had a couple of interviews with the local press and had quite a big response. I was very clear to people who rang that it was not a support group as such- otherwise you get rung up at 8pm on a Friday night by people desperate for help- and I've got too much on my plate anyway.

Alternatively you could see if the NAS has an acive branch near you- nothing round here. OR you could ask the local child development centre if they know of anything. If you're in the SW- let me know! And good luck!

ACH · 22/04/2003 20:22

Ritalin can bring huge benefits to children with ADHD while it works. The first time it was suggested my son went on ritalin I refused but as time went on and he began to get a lot worse I agreed to give it a go. He was like a different child but after about 8 months it stopped working. he is now on antidepessants instead. its also well worth reading Understanding ADHD by Dr christopher Green it was recommended to me by my health visitor and it is quite helpful, although I wish schoolteachers would read it might help them be a bit more understanding. good luck.

hairmum · 26/04/2003 13:58

If your child has dyslexia, dyspraxia, aDD or aDhD lok at web page DDAT.co.uk
My husband works for them and the improvement of the children who go on their program is amazing.
It is well worth looking into
Hope this is of help to anyone

Copper · 26/04/2003 16:24

hairmum
interested to see that your dh works for DDAT - we have just started with this with my ds!.(Unfortunately we just missed the drop of £200 in initial charges - hence eating up all the nasty things in the freezer we haven't fancied before, to try to get through to payday - not appreciated by anyone.)

Can you tell us a bit more about DDAT successes? It certainly seems to make sense, but it would be great to hear some real life cases ...

ScummyMummy · 26/04/2003 19:05

Sorry hairmum, and very much hope I'm just being a cynical old cow, Copper, but I'm quite suspicious of these sorts of commercial organisations which take lots of money from worried parents who want the best for their kids. I've just looked at their website in the hope of being pleasantly surprised and felt that their claims were unsubstantiated and rather dubious, frankly. I am definitely biased though as I have a friend who put her dyspraxic son through these sorts of supposedly cerebellum-enhancing exercises for months on end with no discernable results. He remains a delightful young man with mild dyspraxia, yet her wallet is considerably lighter. I also work with families who have kids with special needs or disabilities- and I know just how emotionally and financially dedicated many parents are prepared to be when it comes to finding therapy that promises to help their children. Some organisations do take advantage of that, I think. Not saying DDAT is necessarily one of them but it wouldn't surprise me- how else are they going to make a profit? Obviously wanting to make a profit doesn't necessarily make their "product" bogus but please, please don't give them too much of your money, Copper, unless you're really sure it's working for your son. Good luck though- I really do hope I'm wrong and that your son will benefit.

robinw · 26/04/2003 21:37

message withdrawn

Jimjams · 26/04/2003 22:41

I've heard mixed reports of DDAT. Brian gym is similar and you can just buy a book of exercises and do it yourself.

Copper · 29/04/2003 17:45

robinw
I read quite a lot of reports from the internet before deciding to try DDAT. I don't think DDAT claims to do anything which hasn't been investigated before, but it does bring together a lot of disparate research to try to form a program to ameliorate the situation for dyspraxic and dyslexic children.

jimjams
mixed reports implies that some must be reasonable! And although the book may tell you what exercises are available, going to DDAT provided a plan modelled on his specific weaknesses and the motivation for actually doing 10 minutes morning and evening - bit like Weightwatchers, really, instead of DIY slimming.

scummymummy
Whether it's a rip-off is of course something that one does wonder about. I agree that the website does seem rather too simplistic. However, I don't believe that the motivation of the man behind DDAT is to make a profit but to spread the use of a technique that helped his own daughter out of a hugely traumatic period of her life. (I was moaning becaues I'd just missed a reduction of £200 in the cost - not many people operating in a seller's market and with waiting lists would reduce their fees if they were only interested in parting fools from their money).

As for money, it was going to cost us as much or more over a year to take up private 'traditional' dyslexia tuition, based on yet more literacy work of the kind he has been getting in school (and hates). This approach hasn't worked yet - why should it work now?

We felt that, having finally discovered that ds was dyslexic, we should do something - maybe we are being foolish, but ds sees that we really value him and after years of low self esteem that is a very important message - more important than a holiday this year, or a fuller purse at the end of the month to spend on something else.

Jimjams · 29/04/2003 21:04

oh don't misunderstand me - I'm a bit of a believer in DDAT etc- and we're off to BIBIC in June (costing a fortune)- I know they'll give us a home program incorporating that type of thing.

Copper · 30/04/2003 09:33

jimjams
what's BIBIC? And what is SALT (been lurking on your other boards)?

Jimjams · 30/04/2003 15:04

SALT is speech and language therapy.

BIBIC stands for the British Institute of Brain Injured Children. They assess children right acorss the board- from very severe brain damage to dyslexia. They send you home with a home programme. We're off for a full 3 day assessment in June. I know that they will send us back with Brian gym type exercises to do at home. We then gp back for two day long follow-up appointments.

BIBIC is a charity. They provide bursaries for people unable to afford the assessment. They part -fund the assessment for those who can afford it. For the total of 5 days assessment we will pay approx 1000 pounds.

Copper · 30/04/2003 16:04

Jimjams
thank you. I had never heard of BIBIC. It sounds like a very good thing and something that I - and I'm sure lots of other people here - would like to support. Reading about the difficulties you are facing has really opened my eyes. I wonder if Mumsnet or Mumsnetters have any views on how to tap into all our goodwill?

hairmum · 11/05/2003 21:55

Robinw If you look in the journal Dyslexia Feb or Mar issue 2003 there is a study by David Reynolds et al giving research evidence. This study can also be found on the ddat website.

Hope this is helpful

DEBDEB · 15/07/2003 00:24

Please can anyone help me and my family.I have a 7 1/2 yrs old son who can be extremely naughty at times. I have read a few books about ADHD and i think he has most of the symptoms on it.
He also seems to be struggling in spelling and writing at school. His teacher can be quite hard to understand as one minute she is saying that he isnt really a problem and the next he is really naughty, disturbs easily and the other children messy writing and not concentrating.
He is corrently seeing a psychologist who is doing assessments and trying to help with the behaviour which isnt getting any better.She has referred us for help with him but on the other hand keeps asking us why we want a diagnosis for him? But surely if we know what we are deeling with it would be alot easier!
He is seeing a specialist for abscenses(Epilepsy) and he has now referred him to a psychiatrist and a clinic for a diagnosis on ?ADHD As he has now been seeing my son for awile now.And now he is getting worse!
The sooner we get him sorted the better.He says some nasty things that hurt,doesnt have a clue why your telling him off and gets angry for doing so,he attention seeks alot and if you do'nt give him the attention he will do something naughty to get the attention he wants.He interupts you, we have a problem getting him to sleep as sometimes awake til gone 11:30pm which can be very hard and stressful on both my husband and i.
We have tried sleep charts & reward systems,Cutting foods out that we now know he has a sesitivity to,lots of praise,asking his GP about fish oils and other medication but have to be very careful as he is Asthmatic and epileptic. Its not want for trying things as we do but at the moment we are waiting for appointments(psychiatrist & clinic). Which seems so long!
Im so sorry this is so long but iam in need of some help/advice. How do we go about getting a IEP (Individual education plan)in progress? Does he have to be diagnosed ADHD for this? What does statemented mean? and does he need to be diagnosed?
I dont even know if the school will help us?
please help!!

tallulah · 15/07/2003 17:08

Sorry to hear about your problems Deb. I'll admit to being confused- if your DS is seeing a psychologist he/she must know whether or not he has ADHD? My DS got his diagnosis the first visit & was then tested for other things.

The first clinic we went to told us DS was just a naughty boy & caused by bad parenting & a father who worked nights! Needless to say we didn't go back there. If this is the case where you are, perhaps you need to take him elsewhere?

Sorry, haven't been much help but do feel for you.

Lara2 · 15/07/2003 17:38

To get an IEP you need to ralk to his teacher, or the school's SENCO (Special Needs Co-ordinator). If he is such a problem at school, then they blimming well should have had him on one already. A Statement is a Statement of Special Educational Needs. Whether that need is academic, or physical or EBD ( emotionl, behavioural difficulties). They can be for a combination of all. You need a diagnosis and outside school reports for a statement from Educational Psychologists and paediatricians for example. The ease that you get your staement depends on your LEA. You don't need this level of diagnosis for an IEP.
If you're not sure the school will be supportive, go and chat to the teacher, the senco or the Head. Anything that will help your son they should be in favour of, because it will ultimately help them to do their job. Good luck!
Bt the way, if you're in Hampshire, don't hold your breath, our senco recently went to a Senco's conference and a finance guy from Hampshire County Council berated them all, saying he didn't know why they bothered to put forward staements because we had to find the money out of our own school budgets!!!!!!! And the needs and rights of the children..........................? Our Senco was SO depressed!

Jimjams · 15/07/2003 18:17

Fancy thinking children's needs should come into a statement Lara. You know it's all about the resources available (ie none).

Sorry to hear you are having a hard time Debdeb. LAra has said everything I was going to. If you want to know more about statementing see here

Stacie · 16/07/2003 19:55

Why not try diet modification first? AD/HD is now considered part of the Autism Spectrum, which basically means that it is under the same umbrella. There is all kinds of help available biomedically by treating the whole child and not just "eliminating the symptoms" by doping them up. I really feel drugs should be used as a last resort because of the dangers involved.

you may wish to begin by reading the book... Children with Starving Brains by Dr. Jacquelyn McCandless... marvelous book on biomedical treatments for ASD.

here are a few sites:

www.latitudes.org/

www.extremehealthusa.com/autism.html

Lara2 · 18/07/2003 20:35

Can I just say that you really should consult a dietician before you radically change your child's diet from a book? We have a child at my school whose mother has done this and it has made NO difference to his ADHD in any way whatsoever and the poor child is always hungry. He steals food from other children's lunch boxes. I am very sceptical of diet modification for ADHD, simply because from my wide reading, the concensus seems to be that it doesn't change the basic symptoms of the ADHD - because it is a chemical inbalence in the brain. It needs behaviour intervention, and possibly medication. Some foods/additives do have an affect on behaviour and most parents can isolate them and cut them out, which is completely different from a radical diet.

Lara2 · 18/07/2003 20:41

Stacie, I'm afraid that your view of 'doping up' children with ADHD is so misguided. The medication given is actually a type of speed.Far from making them into zombies, it gives ADHD children thinking time before they act. This in turn gives the behaviour tactics a chance to work. The ultimate goal is that they will learn strategies to help them for the rest of their lives - not just in the short term. Some health authorities are reluctant to give children over the age of 16 the medication, but it really does work when it is properly prescribed and believe me, a child with ADHD has the potential to rip apart your family and lives if left untreated.

Davros · 18/07/2003 22:33

Did I imagine it or did I hear quite a long discussion on Radio 5 Live this morning about ADHD? I've looked at the BBC website and can't find anything. Assumed it was in response to some new theory or research (possibly link of ADHA to crime?). Did anyone else hear anything about this?

Stacie · 19/07/2003 03:11

Lara, I understand what you are saying. I am speaking from personal experience. I know what ritalin does to a kid. I spent many years on it!

Ritalin is dangerous. I strongly feel there are much safer alternatives. Biomedical treatments are doing wonders ADHD. I know many kids who are undergoing chelation therapy and loosing their DX's after a few months. Diet changes. Vitamins. Upping the b6 alone will decrease aggression!

Below is something I wrote about my experiences..

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By Stacie:
My experience on Ritalin.

I was put on Ritalin in 3rd grade in 1972 because my teacher said I "day dreamed" and wiggled in my chair. They called me "hyperactive" at that time. I spent 7 years on it untill in High School, I said I wasn't taking it anymore and quit. Here are some of my reflections...

I grew up a military brat. My father was stationed in VA. Beach at the time. I remember my "day dreaming" as they so called it. Had they done more research into my overall health they would have discovered I had/have tactile defensiveness since infancy. I could hold mashed potatos in my mouth for a very long time. Everytime I swallowed, they choked me. Fruit pulp gags me. I hated having hair cuts and it always took several people to hold me down in order to cut my hair or toe nails. Had they looked any further, they would discovered I could hear the lights. It sounded like little machine guns. Had they looked even deeper they would have discovered, that I could see the lights flicker. Had they asked about my gastro-intestinal system. They would have discovered that I never had a "normal" bowell movement. It was all diarhea. Had they asked about my play habits - they would have discovered that I only set up games to play but never really understood how to play them. I loved to play with plastic animals and always set them up in a nice little scene. Or the same thing with the Fischer Price people. I never played with these things only set them up. I absolutely loved to bounce on a pogo stick. I would do that for hours or swing in a swing...

Does any of this sound familiar?

Had they had tested me in any sort of way, they would have discovered that I am moderately dyslexic also along with Asperger's. couldn't do Asperger's because the U.S. did NOT recognize the disorder.

No, they didn't do any of the above. I remember talking to my mother a few times when I was older. I told her that probably to other people the Ritalin appeared to work. I didn't wiggle in my chair anymore. I still daydreamed. It was a shutdown process for me. I was overwhelmed in a classroom. I never did that at home. But at school, all the Ritalin did was kept me from wiggling in the chair. I wiggled to fight the shutdown! I knew I wasn't suposed to shutdown and I fought it. After the Ritalin, I just didn't care if I shut down or not.

Did it work? Was it effective? Not to me. I just didn't care.

[My thanks to Stacie for allowing me to use this experience on my site.]

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Stacie · 20/07/2003 01:48

Here is the link about Dr. McCandless's book Children with Starving Brains....

www.autism-rxguidebook.net/DesktopDefault.aspx

Jimjams · 20/07/2003 09:00

Fish oils are meant to be good for ADHD and you can give it without changing the diet iyswim. They've helped ds1's dyspraxia. Efalex is a recommended brand- can get it in Boots. I do know a family who have had great success with the gfcf diet for ADHD, but then other members on the family are on it because they are ASD so it's being done anyway iyswim. We have found it very helpful for ASD, but ds1 doesn't really have any ADHD tendencies.

Fish oils may be worth a try anyway?