ADHD & Dyspraxia

[littledotty27]

Hi All

 

My 13 yr old son has just been diagnosed with ADHD although he was diagnosed with ADD 3yrs ago but was only verbally informed & then signed off from the clinic.

 

I had enough & demanded he be referred to CAMHS (not CAMHS who saw him last time).

Since being referred, CAMHS have been brilliant I really feel I have got somewhere in the last 5 months, however after receiving the notes from the OTHER clinic,they actually diagnosed Dyspraxia & not ADD,but I can't get my head round that they signed him off a month later.

 

Is there any process route I can go down to officially complain? My son could have received 3yrs of help by now!

 

I am also a bit dubious to the medication he will be put on, he's not on any yet & havn't been told what he will be put on. Can anyone shed any light with re to side effects etc?

 

Also what sort of benefits will I be able to claim for him?

 

Sorry in advance for all the questions.

 

Debbie

[Bookworm]

Wow, that's a lot to answer...

 

Ok, first, the mis-diagnosis: I know it's not going to be a consolation, but it is easily done. All these conditions are on the autistic spectrum and it isn't called "spectrum" for nothing. Even specialists argue amongst one another over te same person to establish a precise diagnosis. Those conditions often cohabit and one might be more apparent on any given day, depending on so many different factors.

 

With this is mind, I am not sure that a complaint would go very far, but if you are adamant on that, then your NHS trust will be able to tell you what their complaint procedure will be.

 

Medication... There are 2 main medications prescribed for ADHD, Straterra and Ritalin. They have very different side-effects and results with each child, from virtually no response to zombifying to them climbing up the walls, so that's something that can only be gauged by trial and error on your child, sadly. Hopefully, the right medication/dosage will be found early on, but remember those dosages may well vary with the years.

 

Some of my friends' kids respond well to environmental changes, some to medication, some swear by one, some by the other, some have to time it so that the child will be ok for school, or will sleep at night, there are no 2 similar reactions, so whatever anyone will say won't be much help to you.

 

Benefits: again, it varies on the difficulties he has in both his awake and sleeping hours, how much care he requires etc... Apply for DLA ASAP, and if you don't work, you can also apply for Carer's Allowance (but it does affect other benefits). Once you get DLA, you can get additional premiums on Housing Benefit and Council Tax Benefit to reduce your liability, but we can coe back to that once you have the rest out of the way.

 

The fact he's 13 is going to make it harder for you to succeed on the DLA front, as they will probably say that if you have managed until now, he can't have been that bad, but again, we can assist you on ce you have the forms.

 

HTH, any other questions, shoot.

[BiteMe]

Hi,

 

I was diagnosed with ADHD when I was 4 and put steaight on tablets, then I was diagnosed with Aspergers when I was 8, I got re assessed recently, and now I don't have it.

 

I would say this to you, don't be too hasty about putting him on medication, medically, ritalin, stratera & concerta (slow release extra strong ritalin) are the closest things to cocaine. Cocaine users snorted concerta and the could not tell a difference. Aside from that, I must say now I am 18 and have been on these tablets for 14 years, I can honestly say I would not recommend it.. When I am not on them I go nuts, and I crave them in an addictive sort of way. It also seems if I am staying at a friends house and then I wake up and don't take my tablets I am perfectly normal. I would seriously consider the implications it could have to your son once he is on them for a few years, sure they make you act normally but it is not worth being on something, trying to come off it, and then finding you are addicted. They are also HUGE appetite supressors. I am 5'10 and 8 1/2 stone. You will find he will eat loads of food at night when they wear off, but will eat virtually nothing during the day, not even breakfast.

 

I didn't have a choice to go on these, but I think it would be a good idea if your son did. He is rather late to be diagnosed.. 13 years and it went undiagnosed? Something sounds wrong here.

[Guest Cartaphilus]

with Aspergers when I was 8, I got re assessed recently, and now I don't have it.

 

So do you mean you were undiagnosed of Aspergers (which is life long) or ADHD?

[BiteMe]

So do you mean you were undiagnosed of Aspergers (which is life long) or ADHD?

 

 

Aspergers... Not so life long after all. Personally I think it is made up. I think that scientests and doctors are not happy until there is a label for everything.

[littledotty27]

Hi Thanks for your advice.

It is long time to be left undiagnosed & do feel let down to be honest.

The tablets you mention are a concern,as my son is seriously underweight as it is & camhs have referred him to a paeditrician before they put him on meds.

[BiteMe]

Hi Thanks for your advice.

It is long time to be left undiagnosed & do feel let down to be honest.

The tablets you mention are a concern,as my son is seriously underweight as it is & camhs have referred him to a paeditrician before they put him on meds.

 

Whilst I personally find them addictive etc. It is a fact that they supress your appetite. When I was in school most of the girls were taller than I was. Also the pediatrician will meet up with you every 6 months or so, and plot how his height weight and blood pressure are. When he hits 18 and he is too old, he will be passed on to a behavioural psychologist (not as bad as it sounds apparantly, I am due to meet one soon I think)

 

I really am puzzled at this late diagnosis.... Don't hate me for saying this but could it just be hormones?

[littledotty27]

no its definately not hormones!! Re-read the 1st post I have been taking him since he was 6 yrs old,they diagnosed a.d.d verbally then signed him off.

It's only until recently I demanded he see someone as his behaviour had got worse & his school found him difficult to deal with.

[Snappie37]

Hi Littledotty,

 

Our nephew lives with us as his mother died and father unable to cope. He is nine and was diagnosed with ADHD last year. Up until then his behaviour had been out of control and the school were on the point of excluding him. He is now on 20mg of Ritalin a day and the effect has been really good. He is much calmer, but not zombified, his concentration levels at school have improved 100% and he is generally a pleasure to have around.

We were also worried about Ritalin but tbh its really worked well for him. His height and weight are assessed every three months and, although his appetite is slightly reduced (he did have "food issues" when he came to live with us) he is still growing normally and putting on weight.

 

So Ritalin, in my experience is worth a go. It doesn't work for everyone, but just monitor it closely and hope for the best.

 

Hope it goes well!