Saturday, 8 February 2014

Setting the record straight, and talking about pee!

So, as well as our holiday there have been a couple of developments for the boys.

Firstly, that letter . . .

Just before Christmas we had an appointment for J with the Neurodevelopment clinic, discussing our concerns (again) and working out the next step.  I wrote about it here.

A few weeks later we got the write-up of the meeting.  Now, whilst the meeting was infuriating - a mixture of them minimising what I was saying and obsessing over small things - the report of it was so much worse.

The report had factual errors - it listed J as having had "a few surgeries to fit grommets", he has never had poor hearing, we didn't discuss surgery or grommets . . . It went on to state that J was cord wrapped at birth - again factually incorrect, he had a true knot in the cord, which as it tightened cut off his blood supply and stopped his heart. Cord wrapping is not even close.  There were others too, but you don't need me to go on and on.

Along side this there were points that were minimised - J gets stressed in the car if we go more than about 40 mph, go around sharp bends, over bridges or flyovers, overtake, drive in the outside lane or go down a steep hill.  I listed all of those points in the meeting, but it was recorded as "J gets upset when driving at excessive speed."  I told them that J will not eat meat with any texture, will not try new foods or eat cooked vegetables.  This was recorded as "J loves raw vegetables".

Finally there were a couple of points that got whole paragraphs that they just didn't rate.  J struggles to play hide and seek - this comes up maybe twice a year! - he finds it hard to stay hidden if the seeker is close, and will often leap out and say something like "here I am" or "You missed me!".  Really, it's not that huge a thing. 

So, after fuming, reading and rereading the letter we decided it just couldn't be allowed to stand unchallenged.  There was very little in it that felt like our J, and if it stayed on his file as it was then anyone reading it would get a totally incorrect picture of him.

It was time to sit, be calm, and dissect the report.  I went through, sentence by sentence, and underlined all the parts that needed work.  Then I wrote a firm but polite letter, thanking the team but telling them I was disappointed to see so many errors.  I told them where to look (ie paragraph one, line one) quoted what was incorrect, and then told them the correct version.  My letter ran to three pages . . .

At no point was I rude, insulting, or aggressive, I simply took the approach that there had been a series of mistakes that needed to be rectified in order to keep the file accurate.  I really did feel like being rude though!

We haven't had a proper reply yet - the doctor is on annual leave - so I don't know how much of it they will accept, or this is the beginning of a long running dispute, but I'll keep you informed.

We also had an appointment for J at the urology clinic.  J wets the bed, and has tiny accidents in the day.  We spent a long time talking about things with a lovely doctor, and J has been given some "homework". He needs to drink a lot more - about 2 litres a day - to pee standing up, and to make sure he shakes . . .

It was a pretty embarrassing time for both J and I, spending an hour talking about pee isn't my idea of fun, but the doc was very straight forward, very helpful, and gave us a lot to work with. 

It looks like J's bladder is a bit irritated, due to him not drinking much, so he has cranberry juice to help soothe it.  It is also possible that because he has never drunk enough his bladder hasn't "learnt" to hold much, and gets stressed easily.

So for the last two days we've been watching J, and encouraging him to drink more.  Yesterday he drank more than ever, and just about managed to get to 1 litre.  We have quite a lot of work to do there it seems.

And, finally, we got the date for M's ADOS assessment - 4th March - not too far away.  I expect that we will get the appointment for J soon as well.

So, there we have it.  Bullets bitten, letters sent, pee discussed and appointments made.  A busy few weeks really!

1 comment:

  1. ((((hugs))))
    I know how infuriating it can be when medical professionals get things wrong-you start to wonder did they even listen to you in the first place!
    We are just starting our road with CAHMS im hoping it will not be a bumpy one