Please or to access all these features

SN children

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

Opinions and advise wanted.What would you do now if this was your child??

5 replies

luckimum · 21/06/2013 13:47

When my DS was 3 years old he had Meningococcal Septicaemia. He was very lucky as he was mis diagnosed (i did actually write a thread about it on here) but Thankfully he pulled through.

He was given an appointment ten days after he left hospital and the doctor basically checked his rash was clear, he was then discharged from his care with no further appointments!

I expected him to be tired and his recovery to take a while but I noticed his speech was different and his memory had been affected. I went back to my GP and expressed my fears, he referred my son to a paediatrician. To this day I have kept the letter telling me my son was fine, because I KNEW I was not "worrying about nothing" as the paediatrician told me. At 4 my DS didnt know any colours, couldn't speak properly and although I found out it was vital that patients were given a hearing test 4 weeks after having MS, my DS had nothing of the sort. It was only when I insisted on a hearing test and they realised his hearing was bad that he had gromits fitted. Speech thereapy was once every 6 months and a total waste of time.

My DS is now 8, he is a gorgeous funny little man but its clear he has problems. The school have been absolutely fantastic and his SEN teachers are brilliant with him.BUT because of his memory problems and lack of concentration they are bringing in other special needs teachers as its clear he needs more than the school can offer.

Last week one of his teachers asked if I would mind a speech therapist to come in and see my DS, im all for any help he can get and agreed but they also asked if I had any information on how MS affects children. I told her I had looked into it when he was younger but I would certainly go back to the Meningitis Trust site and gather what I could.....and what I have found has left me so angry.

A study done (MOSAIC) has conclusive evidence that MS survivors are significantly more likely to suffer from hearing loss, speech and communication problems (five times more likely). They are more likely to have a borderline IQ verbal and non verbal, deficits across all aspects of memory and one in five have anxiety and behavioural disorders!!

I feel so angry that he has struggled for the last 5 years and its only the school that has tried to help him.I took him to my GP this morning and showed him the research and he has ordered a hearing test for him and told us to come back in 3 weeks!!
He should of had follow up appointments and he never, he should have been given a hearing test and despite the fact I voiced concerns over and over they have dismissed me as an over protective mother.

I dont know where to go from here. Im obviously going to push with the hearing tests but what would you do if this was your child??

OP posts:
ouryve · 21/06/2013 14:25

When was the MOSAIC study done and published? That might have a bearing on how proactive (or not, in your case) the follow up treatment was. Whenever it was done, and whether it's old news or not, the least I'd be doing, now, is pushing for a thorough work up - not just hearing tests, but cognitive and neurological tests.

Anything over and above that depends on how much energy you have. If you only have the energy to fight for your DS's needs now, than that's where it should go. If you have enough anger and energy to pursue a case for medical negligence, if there's one to be had, then no one would blame you.

kitkat10000 · 21/06/2013 16:58

Meningitis society (meningitis.org) website had a link on what to do when treatment hadn't gone as it should

I would also ask your Gp to refer you to a community paediatrician - say you think this would be a good person to get an overview from with the SN issues and also meningitis issues too - it would help set your mind at rest

lougle · 21/06/2013 17:25

If it were my child, I'd be trying to separate my feelings of anger at the medical professionals from my child as they are now and pushing for the support he/she needed.

coff33pot · 21/06/2013 17:54

I would say the same as Lougle really. Yes its disgusting and terrible practice the way they have ignored your concerns and your sons issues.

But IF it were me I would spend all the energy I have on making sure my DS had all the support, assessments and tests in place and a good education follow so he can catch up with life.

Thats after slamming, banging, crying and fretting of course :)

I only say this due to it taking so long to get my son the support. Legal battles can be time consuming and good time lost towards more important issues.

Maybe once your son is suitably supported then cause hell on earth with as much paperwork you have x

luckimum · 27/06/2013 11:53

Thanks everyone.
Yeah I am concentrating on getting DS everything I can to help him,the school are pushing to get a statement for him but I know its hard work to get one so ill just keep pushing and shouting.
I just want to get him everything I can to make things easier for him, he is a lively outgoing boy and dosent seem to realise he is any different to anyone else but I dread the day he does! Hopefully between me and the school we can get him the help he needs and the gap between him and others his age will have closed a little Confused

OP posts:
New posts on this thread. Refresh page