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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Partial dx received today

51 replies

Triggles · 07/11/2011 16:04

Paediatrician told us DS2 has a partial diagnosis today. ADHD & DCD - (which for some weird reason they use an acronym of DAMP - which I find horrible!!) He also has sensory problems and extreme social communication problems. Still grey on the ASD aspect of it. He was a tornado in the paed's office. She has suggested ritalin again... we're just not happy with it, due partly to his age (5yrs), and partly due to the fact that he's already on other meds for eczema and asthma. We've told her at present we are not comfortable going to medication, but will be open-minded about it and revisit it as he gets a bit older (and more difficult to control physically). She also felt that the school may suggest he go into a special school as of year 3 (when he would normally go to the next school after his present infant school).

She's also looking into finding some sort of support for DH in the form of counselling, as he is having serious coping problems and cannot deal with DS2. She mentioned "respite" a couple times today, but honestly if we can get counselling for DH, that's our biggest stress right now. We have "respite" in the form of full time school. Now if we were homeschooling, that would be another issue entirely!

Not sure how I feel about getting a diagnosis, to be honest. I'm actually not horribly upset over it, as it's pretty obvious about the ADHD & DCD for him, so I was fully expecting it. It doesn't really CHANGE anything. And they still have other problems they need to address as well, so while DH is in a bit of a tailspin over it, I'm actually not feeling much different. (although tired from the long day)

OP posts:

intothewest · 09/11/2011 16:47

Glad you're staying strong, TRIGGLES- It sounds as though you have had a lot to put up with for a while.Look after yourself as well though.

Becaroooo · 09/11/2011 19:43

triggles How can they think you paranoid????

Its a very strong medication with proven side effects....any parent would think twice!!!! I only know 1 child on it and it has really helped him, but he was a bit older than your son when dx and when he started the treatment.

Original poster

Triggles · 09/11/2011 21:00

I suspect they're going to be pushing the "it's so much stress on you, it would be far easier on you if he was taking the medication" angle... which, if they knew me AT ALL, is not the approach to take. I would rather things be 100 times worse and more stressful than they are now than risk his health further.

OP posts:

Becaroooo · 09/11/2011 21:39

Sigh. Taking the meds isnt the "easy" option though, is it? Why do HCPs persist in this attitude?

Original poster

Triggles · 09/11/2011 21:56

I'm not sure. The senco at the school brought it up twice.. the first time I ignored it. The second time I was very clear - it's between us as DS2's parents and his paediatrician. The school has absolutely no say in it whatsoever and I would not be discussing it with her. You could tell she was taken aback by that, but that's just too bad.

OP posts:

dolfrog · 09/11/2011 21:57

Triggles

just caught up with this thread, DAMP is one of those combinations of disabilities first recognised in another European country, so the name may not be so UK friendly.
Have a look at Deficits in Attention, Motor control, and Perception (DAMP)
and you may also be interested in Attention Deficit Hyperactivity Disorder (ADHD) and Dyspraxia - Developmental Coordination Disorder (DCD)

Original poster

Triggles · 09/11/2011 21:59

Yep. I've done a lot of digging around on it, but appreciate the links, will browse a bit. I just think there surely was a better acronym. It's just distasteful as a word to describe a child. That's fine though, as I'll simply refuse to use it. ADHD/DCD works fine.

OP posts:

dolfrog · 09/11/2011 22:06

Just looking at the full title you could call it DAMCP, a Triggles variation on a theme

Original poster

Triggles · 09/11/2011 22:22

LOL Sorry, I know I was banging on about it, but it just seems rather insensitive or perhaps a bit like ridicule. Perhaps its just me.

OP posts:

dolfrog · 09/11/2011 22:32

I have always felt the same as you and hoped that the UK professionals would choose a slight variation, or even if it was used more in the USA, but the current resulting translation does have a poor UK alternative interpretation.

I would go for the Triggles variation as it includes the important "Perception" which is missing from what you and I may prefer ADHD/DCD

DebbieSolloway · 10/11/2011 06:23

DCD is Developmental Co-Ordination Disorder I take it.

Son's SEN teacher said the same of him.

By chance we ended up with a INPP trained therapist and after tests said she said he has neuro-logical developmental delay brought on by retained reflexes.

These reflexes inhibit development which make coping with everyday activities difficult. Oftentimes they exhibit behavior similar to ADD.

If you search here you will find a lot of threads on Retained Reflexes. Lots of parents with positive experiances as well. INPP.org.uk is a site you can begin with. Google will yield more info as well.

Worth checking this out before going the medication route.

Original poster

Triggles · 10/11/2011 08:39

I actually have looked into the retained reflexes to some degree, as well as spoken to various medical professionals involved in his care about it. The general consensus has been that there's nothing proven about it and they can't recommend it at this point in time.

We would need to go private for this, and it would involve a fair bit of travel and expense on our part, which is something we unfortunately cannot afford at the moment. So while we've familiarised ourselves with it somewhat, we're still not certain, after the research added to discussions with others, that it's a route we are prepared to go at this point.

Thank you for the info though. Obviously any and all info is helpful.

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Becaroooo · 10/11/2011 09:40

Hi triggles.

Ds1 does RRT and has done a course of AIT...both helped him tremendously.

PM if you want more info x

DebbieSolloway · 11/11/2011 04:11

I would suggest you keep Retained Reflexes on your radar.

There is a fair amount of research done on it. There is also plenty anecdotal advise, even right here on MN.

For us, it's our big hope since on its own DCD is not going to go away or get very much better even with OT intervention (which we tried).

My big regret is we did not start earlier.

Original poster

Triggles · 11/11/2011 18:29

While I understand what you are saying, we generally keep everything "on our radar." However, from a cost and travel standpoint, it's not a feasible option for us in the near future. I have to say that anecdotal advise is one thing, and medical evidence is quite another. I'm happy to keep an open mind, however, I am also fairly analytical in some respects and have to give some credence to the professionals advising me as well.

At any point, while I know it's there, it's simply not attainable for us right now.

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DebbieSolloway · 12/11/2011 06:57

Sure I understand Triggles. :)

Apologies if I belabored a point.

Original poster

Triggles · 12/11/2011 10:47

Debbie - no, sorry. I came across as a bit snarky. I've had the school and paed banging on at us recently about meds and such and I'm feeling a bit battered, to be honest. It's not your fault. I apologise if I sounded rather short about it all.

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coff33pot · 12/11/2011 15:12

If the school are banging on about meds tell them to go to hell and back. It is your decision whether you give him meds or not and only you will understand and know when it comes a point in his life when he might need them.

Some schools look on it as a quiet life for them. He may well need a little help when he is in puberty years when hormones kick in as well as the present problems as it will be harder for him to deal with his emotions then which is fair enough. But again its your decision not anyone elses.

Original poster

Triggles · 12/11/2011 16:06

coff33pot - Yep. I've pretty much said that too them. Doesn't stop it from being mentioned though. I am going to be contacting our OT, as I suspect the school is trying to push me into getting CAF started and I'm absolutely not having it. I discussed it at length with the OT already and we agreed it was not necessary at this point. Honestly, because I've not agreed with a few things the school has suggested recently, this CAF is being pushed. I suspect they think that it will be what they need to push us into agreeing on some of their suggestions. OT told me CAF couldn't be started without my or DH's permission though.

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Original poster

Triggles · 12/11/2011 16:07

argh... TO them.... I hate making typos

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coff33pot · 12/11/2011 16:34

I had it mentioned recently by someone when I said DS diagnostic assessment said probable ADHD combined with Autism. Was told "oh good that means he will have pills.........

I cant actually type what my whole response was. Over my dead body was one of them

IF he was violent then maybe, if he deliberately hit and hurt then maybe, if he was depressed then maybe, and if I couldnt control him at home then maybe. Now I can control him, school have the issue (and none of it is violence) so deal with it with 1 to 1. There are loads of therapies out there that I would try before giving him meds just so he keeps his bum on the school seat. Sensory issues are formost the one to get help with, calming atmosphere at home makes a hell of a difference.

I guess you just have to stick to your guns and maybe one day the proffs and teachers will realise that the ones that know their children are infact the parents?

Original poster

Triggles · 12/11/2011 18:29

Dear god, it takes two of us, a head lock and any number of arms and legs flailing just to get CALPOL into DS2 when he's ill. Giving him a pill once or twice a day??? Can we say NIGHTMARE?!?!?!?!

OP posts:

coff33pot · 12/11/2011 21:21

hide the calpol in a pudding

Original poster

Triggles · 12/11/2011 23:30

there's nothing he eats that we could feasibly hide it in... he's off his food right now as well. The only thing he will even consider eating is green apples and squash.

OP posts:

unpa1dcar3r · 12/11/2011 23:52

Hi Triggles
Some of what you've said sounds almost parallel to my life! The depressed partner (now gone and me happy bunny living without constant large rock on back), worrying and wondering about Ritalin, the pinning down etc with flailing arms, legs, spitting and screaming for calpol....

I avoided Ritalin etc for years, now way was i drugging my boys up. Now youngest is on it, has been for about 4 years now and personally I wouldn't manage without it haha. He's defo much better on it than not. But it is a very personal thing and not one to be taken lightly...I would love there to be a herbal alternative which had the same effects.
He could never stomach medicine not from age 3 when he nearly died and had so much of the bloody stuff, no amount of disguising would make him have it, even mixing it with jam! Had to have rectal paracetomol in the end due to his massively high temps when he was so ill.
He's always been fine with tablets though and the ritalin are tiny.

As for the fella, he's being nice now cos he knows he's on a wing and a prayer. I hope it lasts, but if it don't, you know you'll be fine alone. Probably happier!
It's good that you know this and even better that he does!!!!

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