Life with WDS (Worster Drought Syndrome)

Member Name: sandemp

Product:	Worster Drought Syndrome
Date:	21/02/05 (1534 review reads)
Rating:

Advantages: One of a very select few

Disadvantages: Speech difficulty, Behavioural problems, epilepsy, and more

I thought I'd write this review in the hope that it will help stop a parent going through the years of struggle to get a diagnosis as we did.

So I hear you saying "What is Worster-Drought Syndrome??"

Well we'll get the medical jargon bit over before I explain how it affects my son and the long road we had to get the diagnosis.

Worster-Drought (WDS) is a little known and underdiagnosed form of cerebral palsy.
It presents as mild tetraplegia (all four limbs are mildly affected), with marked oro-motor difficulites (that is the mouth, tongue and swallowing muscles don't work properly).

WDS is a complex condition, the children often have epilepsy (uncontrolled in my sons case), learning difficulties, behavioural difficulties (ADHD, autistic spectrum) and speech and feeding difficulties. As well as this the children often drool (in my sons case he only does this when he's ill.

My son was approximately the 106th child to be diagnosed, so as you can guess, not much is known about these children by those that are there to help them.

So how did we come to this diagnosis you may ask.

Well to answer that I need to tell you a little bit about my son.

He was born 7weeks early in 1998, and spent a couple of weeks in the special baby unit before coming home at 2.5 weeks old. Seemed like bliss, but at 5 weeks old he died in my arms, and I mean that he stopped breathing and his heart stopped. luckily I was somewhere where their were first aiders and he was resucitated.

So he spent a week in high dependency on O2 and we were told he had no lasting effects. However he came home on an apnea monitor, and this would often go off as he forgot to breathe, he also developed a very dramatic reflux (this means he projectile vomited after every bottle), but he was a quiet, contented baby.
Too quiet, he did'nt move his legs much and spent most of the day sitting in a bouncy chair.

By now I was getting worried, and I remember I'd worked out he had brain damage of some sort by the time he was 8 weeks old, but was constantly told that he would catch up.

Now we'll fastforward a few months...................

At 11 months my son could not sit by himself, and was referred to a physio, who gave us exercises which worked remarkably quickly, he was actually sitting and standing a month later, although he did not walk until he was 2. In the meantime he had developed seizures and was diagnosed with epilepsy at 4 months. It was also at this time he was first refered to speech therapy and he was still eating pureed baby food at 2.5 years old.

In all this he was a lovable child, who although he could not say anything other than dad, was quite capable of making his needs known.

So now we fast forward to when he was 3.5, this was a bad time. We lost our son, and he was replaced by a zombie who was constantly having one sort of a fit or another. After a year of this he was finally referred to Great Ormand Street, and had a 3 day assessment in November of 2003.

Then in March 2004 we were finally given the diagnosis, and a change of medication meant that his epilepsy was better controlled.

So what is life like now.

My son is now nearly seven, he has very little understandable speech, and has recently been pulled out of mainstream school, as his behaviour is now very violent. He's given his LSA a black eye, left bruises round her neck, thrown chairs around the room, and every thing he does at school we get 10 times worse at home. He will be starting at a MLD school in one weeks time, where they will concentrate solely on his communication, at least for a while.

He has a very selective diet, can't eat mushy food like mash, drinks through a straw and uses a Maclaren Major when out and about (although he'll soon be getting his first wheelchair). And of course he still has violent tantrums, for all manner of reasons much like a toddler, but he hurts much more.

But in between the tantrums, he is an adorable child and though he is high maintenance, he also gives great rewards.

An example of which was the first time he called me Mum, I cried then phoned everyone I knew.

If you feel this sounds like your child please go to the the Worster-Dought support group site at
http://www.wdssg.org.uk/ and read up a bit more.

For further information on how we've dealt with the behavioural difficulties associated with WDS, please look at this review http://www.dooyoo.co.uk/parenting-issues/parenting -in-general/1004159/

Thank you

BTW the rating is for the condition not my son

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