New and saying hi!

[mumtoadozen]

Hi there, so good to be here!

 

I'm Cherry (Chell) 42 from Herts. My youngest son (4) was diagnosed as being on the High Functioning Autistic Spectrum on Tuesday. He's the youngest of 12, with 10 living siblings and ever since he was five months we noticed he was different to the other 10.

I have battled for the past three years to try and get someone to listen to me so it was a great relief when his keyworker made a referral, especially as the health visitor and GP weren't listening.

 

He has other issues too, he's being tested for coeliac and has hyper-mobility, the community paed has said he has traits for ADHD and Sensory processing disorder too, she's waiting for the ADOS before she looks into his OCD and possible dyspraxia.

 

Believe it or not, I'm seeing the GP myself to see if I can get an adult diagnosis as for years everyone has focussed on my anxiety and depression instead of looking at the whole picture so that should be interesting, I scored quite high on the online test but don't know whether to take much of that with seriousness :/

 

Hope to get to know you all better

 

C x

[Shnoing]

Welcome to the forum!

[trekster]

Hello and welcome

 

Does your son have hypermobility, or hypermobility syndrome? If the latter theres a genetic link to HMS and an additional thread on the subject. His ADHD might be hyperactivity in response to pain as that's how my HMS manifests itself.

[mumtoadozen]

Thanks for the welcome Shnoing and Trekster

 

Trekster, please excuse my ignorance but I'm not too sure (I thought they were the same). I know his paed scored him 5/9 on the Beighton Score and has said his ankles are very 'loose', that's why he falls so much.

 

Out of the 11 kids we have 7 that in the old days would have been called 'double jointed', three are suspected Ehler's Danlos but that's got to be confirmed. I myself have a degree of hypermobility which was perfect for gymnastics back in the day and my husband has awfully 'stretchy skin' with serious elbow and knee issues. I know we've had to give a lot of family background which the paed has said sounds as though it's hereditary iykwim.

 

Our little JJ has been a medical head scratcher since five months old when he started to get swollen submandibular glands and fever on a 28 day cycle with nothing but a 'viral' diagnosis. This resulted in him developing Gianotti Crosti syndrome at the age of two which then seemed to get the docs to listen and take it seriously, nothing more frustrating than feeling like they are looking at you like a Munchaussen mum.

 

With JJ he has no concept of pain recognition, he does however react hysterically when anyone around him reacts to something he has done that they deem painful i.e. he decided to 'make soup' and sliced his finger open with a cutlery knife (embarrassing to go armed with offending weapon to A&E) and only screamed because of my reaction to him playing in his own pool of blood, when the nurses were cleaning out the wound he just sat and watched with no reaction while my husband and I were wincing for him, the nurse even commented about it, so, in a long-winded answer, I'm not sure if pain is having an effect. The only time he will complain is if he's having a bad gluten reaction as he is terrified he's going to vomit.

 

Sorry for the ramble, I can talk for Britain through a keyboard

[trekster]

Thanks for your response mumtoadozen, it sounds like your beignton kid has been diagnosed as HMS/EDS. im really shocked they haven't bothered to tell you in writing or verbally. It really get my goat when you're treated as though your simple or thick. grrr

 

The syndrome you mention is that also called 'chronic insensitivity to pain'? Sounds like the nerve receptors aren't passing messages to his brain or he isn't recognising them properly. I can sit for 6 hours needing the loo and still not realise because all I can think of 'my stomach hurts' but I don't realise I need the toilet. This is a sensory problem known as introception ie recognisingty your bodies internel senses. I have severe introception but I think it is also due to the HMS/EDS. There is a thread on EDS/HMS in the 'related disorders' section of the boards.

 

He might recognise pain better with a weighted jacket. Could you carry around his official diagnosis to show any suspicious professionals that this behaviour is normal for him?

 

Could you ask for a referral to a genetic counsellor from your GP? Each child born genetically to a HMS/EDS parent has a 50% risk of developing at least the hypermobile type. Sounds to me like both parents of your children are carrying the genes that cause EDS/HMS. Hannah Ensor produces quite a bit of 'positively normal' merchandise including some really useful communication cards. I have personally found them invaluable to use and advertise Hannahs cards to anyone I see that's HMS/EDS or autistic. There has been a paper published (should be searchable via googlescholar) that links ASD and HMS/EDS (at last) recently. Considering '95% of challenging behaviour in autism is caused by hidden pain' I find that more than a coincidence.

 

There is also a HMSA forum which can give you more information about Hannah Ensors literature and EDS/HMS in general. googling "hypermobility + joints" can bring up their website. I went to a genetic counsellor as I suspected there was a mix of different types of EDS (my feet were clubbed as a child and I stumble frequently over them in fact I fell over them yesterday.

 

Hope you can get all your kids assessed and helped. 2 of my cousins grew up in a large family. There were 11 to begin with, 1 is now a writer and the other a journalist for a sports paper. :-)

 

Getting help for your kids (and yourself/hubby) asap can help prevent further problems later on.