Advice and opinions wanted!! If it was your child what would you do??(5 Posts)
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??
You have had such a bad experience, Luckimum. I can't help you but read all of you post with disbelief. I can see you are angry and want some redress for the support your ds should have had all these years. I hope someone can help you with this. Best wishes.
I'm so sorry to read of your experience and can really understand why you're angry. A doctor said i had flu when i had men B and as a result i very nearly died. I had a look at the MOSIAC research on the meningitis trust website, and it looks like the research was just published last year - is it possible then that your GP and the paediatrician couldn't have known what the potential consequences were 5 years ago?
In response to WWYD if it was your child, I would get in touch with the meningitis trust ASAP to get their support and advice - they're probably best placed to help you help your DS from here on.
DTis: the doctor told me that DS had chickenpox so I can well believe they told you it was flu!! Its scary to think what would of happened had I not yelled back then. Yes there is a good chance that GPs didnt know outcome of study 5 years ago but its the fact that I was dismissed as an over protective mum over and over that has left me angry and now there is evidence that all the things I have been shouting about is in fact after effects of Meningitis Im going to get them to sit up and listen!!
Luvmyboyz: thank you Im going to get some answers from somewhere and they wont be so quick to dismiss
Stargirl: solicitors are expensive and time consuming and I really need to concentrate on pushing with the school to get him the help he needs at the moment but its an option for a later date believe me!!
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