Re: New - & Questions (of course!)

June 5, 2006

Hi

I know of a sensory integration / ot lady very near me in Surrey ( near Guildford) if that is any help. She is really nice and helped me with my ASD son and offered some sound advice to eldest son who I had long suspected had sensory issues.

let me know if Guildford/Surrey is any good to you

regards

Deborah

June 5, 2006

Hello Darla

Where does one begin...We live in London.. is two, he was diagnosed last Tuesday as ASD informally by a SLT who works with ASD kids and diagnoses alongside a neurodevelopmental specialist.

>>WOW you are fast worker getting here so quick - well done!

I have pretty well known that things were different from him since about 4 months old. He's always had serious auditory sensitivity and a serious feeding aversion. I pressed his Ped (he's under ped care for GERD and aversive feeding pattern) for a neurodevelopmental assessment which he received in Dec ( was 18 mos old). We still haven't got an appointment!

>>Same story all over the country

We have contacted Daphne Keen ( a neurodevelopmental specialist) for a private assessment. Thankfully, however, the SLT "fast-tracked" us to see a neuro specialist via the NHS so we now have an appt on 27th of June for a formal diagnosis. Does anyone think it is worth getting two separate opinions? I'm under the impression that the private assessment could run about £500.

>>Given that you are aware of issues and looks like Dx is a done deal, stick with NHS and save you £'s for interventions.

has serious gut problems. He's had gastroenteritis about 5 or 6 times and it generally takes him over a month to get over it. He's had to be hospitalised to go on a drip for dehydration from diarrhoea. (We spent Christmas & new Year's in the Chelsea & Westminster Hosp). I am familiar with dysbiosis etc...but stupidly have thought that my kid just had GERD issues....and that his sensory issues resulted from him being so sick for such extended periods of time. <kicking myself for not recognising spectrum stuff sooner>

>>>Poor little man

After an intensive week of reading and assimilating information I can see that he has quite serious vestibular/visual/auditory problems. His depth perception is really poor, I have always known this and tried to get anyone to listen to me!!!! I've seen him lay down on a flat surface and try to reach down into what he thought was a drop off. He tries to pick things up out of books and cannot judge steps/stairs according to his ability.

Thankfully he has good eye contact, likes being held and touched. His discriminatory touch is very poor though. Sometimes he thinks that he still has something in his hand when he doesn't and he contines gesturing and moving his hand like an object is in it when it is no longer there (such as a cracker)...

>>You are one smart and very observant mum

Anyway...I'll stop now with the dissertation on my son....I'm aware of the OT available here in SW London, I don't think I'll get the Sensory Integration Therapy that needs on the NHS. Anyone know of a Sensory Integration therapist in/around London? I can't seem to find anyone. Or recommend a book that might be useful? loves swinging so we are doing that. Spinning in a chair, lots of rough and tumble on the floor, (which we've always done), lots of walks/running, trying to get him to use his trampoline (he simply cannot jump on it). Any other recommendations?

Also- I ordered Houston Neutraceuticals Peptizyde but received the AFP Peptizyde today. 's ONLY nutrition is powdered infant formula with Gaviscon of which he drinks about 9 bottles a day. His weight is great, he's the size of a 3 year old, tall and handsome (of course, I'm not biased)...I'm trying to arrange an appt with a local biomed lady who is up on dysbiosis/heavy metal toxicity/chelation etc but I'd like to go ahead and start the enzymes now. Should I go ahead with the AFP or wait to get the regular Peptizyde?

>>>The Peptizyde is on its way Why did you chose one over the other? AFP has less/no taste compared with the Pep, both great products but the AFP is probably easier to hide

is on a high dose of Losec (a proton pump inhibitor) so this is probably seriously compounding the gut stuff. Also, of course, the only things that he will eat are gluten and a few bites of broccoli every once in a while.

I've also ordered Bio-Kult probiotics but not received them yet. I've also run a baseline assessment on him (on the ARI site) and started a sleep/diet/poo/behaviour diary.

>>>>You need a medal for sorting all this so quick!!

Any comments welcome. I'm so glad to read the emails flying into my in box and to hear informed parents making educated decisions.

>>>I'm gonna call you now about the enzymes

Mandi in Dorset

June 5, 2006

Dear Darla,

Welcome to the group.

It sounds as though you have a lot coming your way. I'm not good at posting about the emotional issues,but I'm sure others will. Helping our children with autism is a very long marathon and it's important to conserve your own energy and not wear yourself out.

if the NHS diagnosis is coming so soon, personally I wouldn't pay for a private one too, as there will be many other ways the money could go to help your child.

The diet and gut issues sound extremely pressing and I hesitate to suggest anything because you must have tried so many things already, but I suppose you must have heard that the insistance on a very narrow range of foods can be a sign of intolerance.

Have you been to the Treating Autism website? www.treatingautism.com . Another good site is the University of Sunderland Autism Research Unit http://osiris.sunderland.ac.uk/autism/ - they can also do a private test which may point to gluten and casein as a problem.

We went to an OT near Guildford recently for an assessment

Therapy for Children Ltd

Clare Lodge

Petworth Road

Witley

Surrey

GU8 5LU

enquiries@... is the e-mail address. They may be able to help. We saw Caroline Winfield - I think all three therapists there probably have specialist experience in SID. Most OTs don't.

Once you do have a diagnosis (whatever it is) it might be a good idea to find out what health, education and social services can offer in your area. Some boroughs have much better services than others.

Good luck - I'm sure you'll hear from some other members.

Margaret

New - & Questions (of course!)

Hello,

Where does one begin...We live in London.. is two, he was diagnosed last Tuesday as ASD informally by a SLT who works with ASD kids and diagnoses alongside a neurodevelopmental specialist. I have pretty well known that things were different from him since about 4 months old. He's always had serious auditory sensitivity and a serious feeding aversion. I pressed his Ped (he's under ped care for GERD and aversive feeding pattern) for a neurodevelopmental assessment which he received in Dec ( was 18 mos old). We still haven't got an appointment!