What special need does your child have?

[onelasttime]

My DS is 2.6 yo and has an appt to see a speedch therapist and OT & get his hearing tested.

Im worried about his delay....he used to talk a few words but now has stopped. He has some behavioural issues that I was conerned about (ie, lining up shoes, cars etc, biting when he gets mad) my hubby said he might have autism.

So I thought I would ask the other mums here what you child has and the symtpoms so I can see what other orders are out there?

[kiwibird27]

Hello, my daughter has a metabolic condition known as Congenital disorder of Glycosylation 1a. She has severe developmental delay, (nearly 2 and just started rolling)severe hearing loss, short sighted, liver disease and lots of different medical issues. I don't really know much about Autism but just wanted to welcome u!!!

[Loopy Linda]

hi, my son doesn't really have special needs right now, i don't think. but he was born with a large arachnoid cyst in his brain. this kept growing and when he was 5 days old he had surgery to puncture the cyst. this went well and the cyst started to drain and shrink. after a month he had another mri and it showed the cyst shrinking but also that he has ACC which means the part of the brain that links the two halves is missing or incomplete.

he is 7 months old now and just had another MRI to show progress. the cyst has stopped shrinking, it is the same size it was 6 months ago at his last MRI. and as for the ACC well that is missing the rear part and the front part is really thin.

i have to watch his head circumference to keep note of his head growth. if it starts to get too big too fast then he needs to go back to dr as his cyst has probably started growing again and he will need another operation to puncture again.

[LivinOnAPrayer]

Hi! :wave: I hope all the appoints/tests give you some answers with your son.

Alex is almost two. She has delays in all areas, doesnt say anything yet, cant walk and is around 12 months developmentally in most areas.

She also has medical issues including heart, airways and just recently had surgery to correct sleep apnea, breathing, feeding and hearing issues.

She still has feeding issues, she only has thickened formula and pureed foods, minus a few that she is allergic too.

Alex sees speech, ot, physio, dietitian, cardio, ortho's, peads, resp, ent and audiology.

[Nowhere]

hey there

miki is 2 she has a undiagnosed syndrome and suspected metabolic disorders her speecial needs inclue

sensory intergration disorder, obsesesive compulsive disorder, epilipsy, ataxia, balanace and coordination problems, she can walk a bit but mainly with her walking frame, has 24 hour jej feeds and 24 hour g drainidge, 12 hour heart lung moniters

i think that about covers it


As for the autistc tendensies if you are concerned about autism as you sond to be best to get an assesment doine at the pead although there is no cure for autism there are certain therapies that can really help

[srguitargirl]

my dd is 5 mths old and has Bilateral Dysplastic Kidneys and Polyuria which just means her kidneys are too small and they don't work properly and the Polyuria means she pees a lot so needs extra fluids and electrolyte therepy to keep her hydrated and growing. It seems to be working at the moment so yahhhhh but as she gets older it will get worse they think.

I would head to your gp if you suspect Autism they can put you in touch with early intervention centers and places that can test your child to see what is going on. I hope you get some answers soon.

[onelasttime]

THanks for your replies, its amazing how many types of stuff out there!!

I have been searching on the net on autism and it seems like he only has half what the symptoms are..

He is getting his hearing check and seeing a speech pathologist and an OT. So a few more weeks to find out if he has anything serious

[Loopy Linda]

he doesn't need all the symptons. autism covers a big range of problems that show in a variety of ways. there is also different levels from mild/ high functioning to severe.

a friend of mine has just been told they think her son is on the spectrum for autism, they have to wait for further testing. but he can talk (mostly chooses not too) and he is scared of new places and things like that

[mummyof5]

My youngest son has autism, which we suspect is caused by Agenesis of the corpus collosum (as in JarKeirGor Mum's little boy), just waiting on confirmation MRI.
I first suspected the autism when Jock was arount 16 months as there was no eye contact (still has trouble with this), though was told he was "too with it", for autism. When his other issues became apparent, (lack of speech, head butting, developmental delays in most areas, violent outbursts for no apparent reason, stuff like that), we were assessed by the Child Development unit at Westmead Childrens, who told me he was too sociable for autism, but that they would review him before school. That happened this year in March, and they finally gave him his dx, plus an intelectual assessment showed he has a mild disability.
Two days later I read the link to ACC from JarKeirGor Mum, and there were all my sons symptoms laid out for me. He is tiny (chronic failure to thrive, still the size of your average 2/3 year old, but he's 5 years, 3 months), has a small head, long sighted, has a strabismus in his left eye, has long standing hearing problems, has echolalic speech, is interested in fans, lights and his current fav, air con (:yes:I kid you not), to name a few.
I have been investigating Jock for 5 years this month, and it took a link on Bubhub to finally get my answers.
Don't give up, it certainly sounds like you have enough reasons there to suspect autism, so keep asking until you get answers.

[naiwen]

Hi there,

My son has mainly lung issues relating to his prematurity and also GI problems, just wanted to welcome you and hope all goes well!

[Loopy Linda]

mummy of 5, i want to know more. ACC is a very rare thing. all the symptoms you listed my son has nothing of that, yet he has it. i do know of others who are a lot worse off though. i have spoken to two other mums in NSW who have a child with this condition. i don't know what to say but would like to talk to you more.

[mummyof5]

Well, we are not certain yet, though he does have(or has had) a majority of the issues described in the link (university of Maine) you posted, and espcially when I went into the research studies they have done, it was just like reading about my boy.
When I rang the peads from CDU to ask if we could get an MRI, at first she wasn't going to do it, because it wouldn't change the autism diagnosis, but when I pointed out to her, that autism wasn't the only thing he had wrong with him, and that he didn't have a big picture for specialists to follow up on, she agreed, so now it is just a waiting game for the MRI.
He did have what I now suspect were absense seizures as a baby, only lasting for 20 seconds or so, but could never get anyone to investigate further, even though it was my mum who is an RN that first pointed them out.
He was born normal size (though on the small size for my other's), and first got sick at 3 weeks old, and it was downhill from there!! Ended up in hospital at 4 months with pneumonia, where I met his first pead, and starting looking into stuff. This might be where we finally get to stop looking...:fingerscrossed:
He has ongoing developmental delays, had all sorts of feeding issues as a baby, didn't talk until he got grommets at age 2 years 8 months, got his first pair of glasses at age 3, though been having his eye investigated since about 9 months, he has trouble with anything that requires him to cross his midline, so therefore hasn't picked a hand to write with yet, will use whichever is closest to the pen and paper. He is hypersensitive to touch, he handbites and flaps when excited, which is often, has major problems with concentration, no impulse control at all, and swears like a trooper!!! He's also as cute as, a total darling when he is behaving himself, and a real smoocher when he is in the mood or crawling for something....everyone loves Jock!
Hope this helps, will let you know when I get the date for his MRI. Have never been so excited about one of his tests! Mind you if the MRI comes back normal, I may end up in a rubber room, cause it will be back to square one....:hair:

[MyFourCubs]

My boy is autistic. Was diagnosed in Feb at just over 2 years. When I first started investigating autism (when he was around 15 months, he really didn't seem to have many of the symptoms. However, as times went on and on he seemed to have more and more and things that we had thought were imaginative play were really repetitive play. (Eg, he will lay down and push trains one by one through his legs over and over and over. We thought he was pretending his legs were tunnels. Ahhhh...no. Sadly not. He was also dx with Sensory Processing Disorder- pretty standard with ASD.
There are loads of threads in this section on autism. Hope they help:)
Sara
By the way, I think you guys are all awesome and totally fabulous for coping the way you do with all your different situations. You give me strength and inspiration!!!!:hugs:

[Loopy Linda]

mummyof5 if the mri comes back clear you will have something to cross off the list and just move onto the next possibility. you won't need the rubber room.

hopefully you get the mri soon. we were recently on the waiting list for MRI with general anaesthetic, it took around 3/4 months. if you are coming down to westmead we should try to meet.

[mummyof5]

Would love to meet up, after all, if it wasn't for your link, I wouldn't be checking for this condition!!
I sent off the paperwork this week, so assume around the same time frame as you for waiting.
Is your little boy delayed at all? Maybe he will be one of the people not too badly affected by the ACC! One can only hope, can't they?

[Loopy Linda]

hi mummyof5, my son is gordy and he is doing really well. i think he will be one of the ones that is only mildly affected. he has just had an assessment by therapists, i think your son had similar maybe, except gordy's was a baby version of it. and he did pretty well. he scared a month behind in fine and gross motor, right on for an aspect of speech, and a month ahead for another aspect of speech and cognitive thinking. so really good.

his latest MRI showed that his corpus callosum is only partially missing. the rear is missing and the front is there but really thin, i don't think it makes much difference to anything though, now i will just have to say P-ACC for partial.