Introduction thread to help out new people! [Archive] - Bub Hub Pregnancy & Parenting Forum

shelley05

09-01-2009, 18:05

What a fantastic idea!

I am a relative newbie and do find it really difficult to keep up with the SN chat thread at times. Despite the fact that you girls have been so welcoming with my infrequent posts.

Anyways I am a mother to 5 beautiful children. We were only 16 and 18 when our eldest was born she is now 19 and our youngest, Noah, is 19months. Noah has Alagille Syndrome which was diagnosed at 1 week, we have travelled to the US last year to consult with Alagille Syndrome specialists and were told Australian doctors were fantastic in diagnosing him at such an early age. This rare syndrome has so far affected his liver, heart, eyes, bones, growth, vascular system and facial features.

Obviously it is stressful with him having a multi-systematic discorder but what can we do these are the cards we have been dealt with. So lets play the game the best we possibly can, which I believe is one day at a time. Enjoy what we can and try not to dwell on what we can't.

I love reading everyone's stories so please write in and let us hear them!

Take care and much love,

Loopy Linda

09-01-2009, 20:35

good idea julie...so where is your introduction?

well i am linda, i have 3 sons. my baby is growing too much and is now 15 months old! anyway he was born with a cyst in his brain. if was growing very fast and at 4 days old he was operated on to puncture it. op went very well and he is doing really well these days. as a result of the cyst growing in his brain he does have a misformed part in hsi brain, Agenesis Corpus Callosum is the name and it is basically the connection between right and left hemisphere that is misformed.

he also has another cyst growing at the moment and in June we go back for another MRI to look at it

and sorry our thread can be overwhelming... but we are a boring lot really and we love to chat! please join

naiwen

09-01-2009, 21:04

Edited

Imogensmum

10-01-2009, 00:17

Hi all, I don't know if Imy fits the 'SN' label as her issues are very minor in comparison to everyone else I have read here.

Imy is 3 1/2, She has started having seizure which are either Absence or Atonic Epilesy (although followup paed appoint on next week to get a proper diagnosis:fingerscrossed:). She also now has severe/profound hearing loss in her right ear.. may or may not be linked to her seizure activity.

She seems to not maintain blood sugar levels correctly.. which again may or may not be linked to her seizures.. Hoping Drs have some answers on tues :)

I hope I can join in here to - because all you ladies are so helpful and full of advice :)

So hi, I'm Shannan:wave:

Loopy Linda

10-01-2009, 00:49

common mistake, sn has no pre requisites. there is no level to reach before you are accepted, we like everyone and welcome along shannan

Bountiful

10-01-2009, 07:43

This is a good idea for a thread - thanks for suggesting it!

I'm Stacie and my DS Kaleb is 3yrs old in a month. We are currently in the process of fighting tooth and nail for a diagnosis so we know what we're dealing with. He has severe problems with self-regulating and attention/impulsiveness control which leads us to believe that ADHD is likely.

Looking forward to hearing from others who are joining the threads! I don't often get into the SN or ASD thread.

Seekrit

10-01-2009, 08:05

Hi Ladies, I've stuck this thread because I think it's a good idea and needs to be kept 'on top'

Let me know if you want it unstuck! :)

ReecesMum

19-01-2009, 12:49

To all the new SN mums/dads welcome!!!

My name is Lea and i have a little boy who is 3 in march he was born via emergency caesarian and was born with severe brain damage which occured during the birthing process as he suffered from perinatal asphyxia and is classed as hypoxic ischemic encephalopathy.

He also has an absent septum pellucidum(part of brain) which affects his eyes causing septo optic dysplasia(under developed optic nerves) which in turn has caused him to only have his periphial vision.He also suffers from cerebral palsy and has severe development delays and is still unable to walkm,talk,crawl,etc.

He is also on a nasal gatric tube for feeding as he feeds very poorly and will be looking at a gastrostomy(belly peg tube).He also has a self dislocating jaw which is being looked st next month.He is currently at between 2-6 months developmentally in most areas.He also suffers from severe sleep issues due to his inability to regulate between night and day because of his sight issues.I think that pretty much sums up everything.For his whole story click below where is says Reece's Story.

ReecesMum. (Lea)

Nowhere

20-01-2009, 21:49

Im Amy, I have a little girl Mikenzee she will be three in march she has a few hurdles in life but most importantly she has some great quailities and is a gorgous little thing, Yes im very one sided lol but im not the only one that things she is great lol

Mikenzee has a disfunctional gut so feeds into her small bowel through a broviak line and has a gastric drain in her tummyshe has major gut intolerance to everything and servere malabsroption, She has chiari malformation ( brain malformation) and has cysts on her pineal gland and has to have regular MRIs to see when they need fixing, she has epilepsy, sensory intergration disorder, hypotonia and hypomobile joints, she wears AFOs and has a walking frame and a wheelchair, she is short sighted and has glassed ( got them today ) she had sleep apnea and graduated of a hospital moniter for her 2nd birthday, she is still FTT and likely always will be she also has short stature, she also has laryngotraceomalacia and had to operations to fix it, as well as asthma that is prety much controled, and a heart murmer that we will be finding out tomorow if she needs surgery

They are still not 100 percent sure what exactly causes DDs issues but they know she has some sort of Mitochondrial disorder, we will find otu more this thursday we should also find out then is she has CP or not

Mikenzee is great speech and is a very very clever wheelchair diva, Just ask her she will tel you lol

So yer thats all mikis hurdles wel what i can think of im sure I have mised some, But no matter what gets thrown at miki she just brushes is of and get on with life she is a great great little girl and what she lacks in physical size she makes up for in heart and determination, She is a milion times stronger then any one I have ever ever met

I love my little Diva

srguitargirl

21-01-2009, 11:38

I'm Shauna I have a almost 4 yr old ds and my SN little girl Scarlett who is 14mths old.

Scarlett has dysplatic and dysmorphic kidney so in other words they don't really look like kidneys are too small and don't work properly. although her kidney function is good at the moment she is having some issues with blood pressure which is related to her kidneys, she also has poyuria which means she pees lots but this is fluctuating at the moment as well so we're on a good streak and not using a million nappies a day LOL.
Scarlett also has hypotonia and hypextendable joints which means she finds it hard to master gross motor skills however with her new shoes she got yesterday she is starting to walk much better :smiliedance::smiliedance:.

We are in the waiting phase, waiting for her to grow as she is small, waiting to see if her kidneys fail as we pray that they don't and waiting to find out what is in store for us next.
but saying that we live each day to the full knowing that we don't know what lies ahead for us but we just love our little girl and our ds they are my life !

oh and I can say that Amy's little girl Miki is the cutest brightest little button I have ever met if only my almost 4 yr old had her speech and I only hope my little girl has her determination in life I will be a happy lady :flowerz::flowerz:

naomis mum

21-01-2009, 15:26

:wave: my name is Nicole. and i have three children, jonah who is 7, hannah 5, and naomi will be three in early march. she is the reason i am part of the sn chat thread and ASD chat thread. she has Autism spectrum disorder, dyspraxia and hypotonia, sensory integration disorder, as well as a deletion on chromosome one. she also has a redundant colon leading to constipation issues and she has reflux. i love her to bits and she is so much stronger than i ever will be....:thumbsup:

fiona76

21-01-2009, 19:08

Hi, my name is Fiona and i am mummy to 3 1/2 year old Bella. She has Mitochondrial Disease (complex 1 and 4), and as a result has a Chronic Intestinal Pseudo Obstruction, severe GORD and has been TPN dependent for 3 years. She is also globally developmentally delayed, has verbal and oral dyspraxia, Autism and Left Ventricular Hypertrophy. Has spent most of her life in hospital battling sepsis as a result of gut translocation of polymicrobial bacteremia. She is extremely challenging but we love her to bits. She is the strongest person i know and the most adorable little munchkin! She is teaching her medical team something new each week!

Forest

23-01-2009, 08:24

Great idea! I get so overwhelmed reading the SN's chat. Poor little ones... They are so brave.

I have a son 6 and a daught 19MO. Jasmin suffered Stage 2 HIE and a pnuemo thorax at birth.

She has CP, hypotonia. Can't talk or walk but can do everything else she wants to.

Prickle

14-02-2009, 18:58

Hi there, great introduction idea to the forum. I'm Lea a mum of 5, Aneeta 26 (with two of her own Kairo 4 and Jordan 3), Joshua 19, Bindi 13, John 4 and Aleacia 2.

Leacie is my wonderful SN princess, who has been diagnosed with quadraplegic CP level 4 although she is yet to have a cause pinpointed. Her brain scan and MRI were both normal and we're still awaiting metabolic disorder test results. She was 2wks overdue, normal delivery, no problems what so ever until she wasn't reaching her expected milestones at 8mths.

Scope say she doesn't present as a 'typical' CP child as her speech is unaffected, she doesn't drool or have swallowing problems. So I suppose we just keep playing the waiting game (have been waiting for her metabolic test results since Aug 08)

We had THE most wonderful Christmas present from her, she learnt to crawl (well in her own fashion, but hey, she's mobile :D ) I look forward to getting to know you all a bit better.

PS. Sorry but I tend to write essays, lol :ecomcity:

naomis mum

14-02-2009, 19:06

hi. my name is Nicole and i have three children, jonah 7, hannah 5 and naomi almost 3.

naomi is my sn kid. she has del 1p34.2 chromosome abnormality and autism. she also has dyspraxia and sensory integration disorder.

life just wouldnt be the same without her. i love her to pieces.

Nowhere

14-02-2009, 20:43

supa_star323

17-02-2009, 11:17

I'm a bit infrequent qith my visits these days cause life has become much to hectic and I just don't have time, but hopefully I'll be back soon so I guess I'll introduce myself too.

I am Tegan. Single mummy (though I have a new bf!!!) to Jacob. He is 2 1/2 and has been diagnosed with global dev delays and epilepsy. His development is coming along well, all except the speech side of things. And we went through a lot of trial and error to get his seizures under control.

Not much else to say bout us really!!!

kylierenee

27-02-2009, 22:36

Hi, my name is Kylie. I am a young mum to 3 beautiful children. Jasmin is 4, Brandon is almost 3 and Emily is 4 months. Jasmin was diagnosed with a VSD (hole in her heart) at 6 weeks, she also got hospitalized numerous times over her first two years due to Bronchiolitus (later diagnosed as Asthma) which she ended up really sick in
PICU because it was putting so much stress on her heart. Jasmin has also recently been diagnosed Autism which we are still coming to terms with. I look forward to chatting to all you other SN mummies.
Kylie

naomis mum

27-02-2009, 23:06

hi kylierenee

my daughter naomi has also been diagnosed recently with autism. we are still trying to get our heads around it as she has a chromosome deletion causing a sydnrome so we dont know what is causeing what lol!. where do you live? i am in sydney.

MamaRabbit

11-03-2009, 20:54

Hi, I used to be on this site all the time 2-3 years ago but just got busy with the kids growing up etc. I am Elle, mum to Charlie and Sophie. Charlie has severe global development delay - he cannot walk or talk but is very alert and social (and flirts with all the female doctors, nurses, carers etc :bee:). 4 years down the track we still have no rhyme or reason as to why. I won't write too much as I just posted a massive essay on another SN thread on here last night :ecomcity:

We are in Sydney.

Loopy Linda

11-03-2009, 22:46

hi mama rabbit, i remember you from before. your kids look so big now, i think your avatar from before had two little kids on the floor together? look at them now, welcome back!

MamaRabbit

17-03-2009, 23:52

Hi Loopy Linda - you have a gr8 memory! You are right my pic was of my two lying on their tummies on the floor. I think I remember you too, although have you had a name change? Looks like lots has been happening on the SN pages, quite the community now :)

Loopy Linda

18-03-2009, 13:57

nah not so much a great memory, but for ages i had you confused with another member lol then i work out who new member is and then much later i remember it was a rabbit lady i was thinking of and what happened to her??? lol yeah i changed name too.

Sn section very busy these days, they all yak too much!

but it is good new members keeps finding it and being able to talk and ask questions is great. it provides heaps of support i think.

How are the kids going? is your boy in school now?

Cassalina

28-03-2009, 22:38

My little Lucy was recently diagnosed with Angelman Syndrome. I think this is a good description of our angels:

Angelman Syndrome (AS) is a neurological-genetic disorder characterised by global development delays & severe speech impairment. A few individuals with AS develop functional speech, but most communicate through a mixture of gestures, eye contact, adaptive sign language & augmentative communication. Individuals with AS have developmental delays & intellectual impairment. AS also causes movement and balance disorders. Whilst some AS children achieve independent walking by the age of three, there are others who will never achieve this goal. The movement disorder can be mild (only affecting walking and some fine motor skills) or severe (preventing self help skills like feeding, walking & dressing).
Most individuals with AS have a seizure disorder, which can be difficult to treat.
Other challenges can also include feeding disorders in infancy, failure to thrive & sleeping difficulties.

I think Lucy is the brightest and shiniest human being I have ever met. The best thing about angels is that even though they are faced with heaps of challenges, they are mostly always happy and shiny...

Hope this helps.
Jen

Happy2be3

24-04-2009, 21:14

Hi guys, I have a son 17 months who compared with some of your children has only VERY minor issues (so far) however, I do not feel at home in any of the other threads so thought I'd pop in and say hi! :)

DS is 17 months old, doesnt use any clear words so to speak but says "ooh" for "moo" (cow) and dadadadad and mumumumum but not in relation to mum or dad if you know what i mean.. he just blabs them out loud whenever the mood strikes.
ANyway,.. he HATES food, but will eat it if watching tv, he cant chew his food and just swollows chunks whole (sensory issues the therapist is thinking) so he lives on mushed fruit, meat and veg to the same texture your typical 9 month old baby would eat.
He has only just started walking at age 17 1/2 months (thank god) but has very weak ankles and susupected low tone and will probably need orthotics soon enough.
Personally, I've always felt since very early on that my boy is somehow "different" to typical kids.. how i just dont know why.. I think he shows ASD tendencies, but yet he will look me and everyone else in the eye, follow commands, understands nearly everything i say or ask of him etc etc.. hes very interactive is what im trying to say.. so therefore ASD wouldnt really fit would it??? Here is a list of strange things ive noticed:

*Flapping when excited or concentrating from about 6 months old
*used to tiptoe.. not so much anymore
*since he's started walking he is walking in circles and flapping etc
*fixated on crayons, pens etc
*recently started lying down on the cold floor but only for 5 mins at a time max
*the low tone I've heard can be mixed in with Autism etc
*delayed speech & hmmmmms alot
*feeding issues/delays
*covers ears at the shops or if over stimulated
*tunes out when over stimulate.. goes and lies on the lounge for 5 minutes and fiddles with his fingers
*hates loud noise (since he was born, he hated hair dryers, vacuum, other babies crying) is now geting better with sudden noises though and the hair dryer and vacuum
*hates grass
*wont touch any slimy or wet food, hates getting icky things on him at all
*brushing teeth aint pretty
*has started really resisting putting clothes on

anyway, im jsut rambling trying to get it all down. hope to chat soon! :)

naomis mum

24-04-2009, 21:56

hi there happytob3. from what you have described i would say that your son indeed is a candidate for an autism spectrum disorder. my daughter has autism and a chromosome disorder and when i read your post i thought you were discribing her! she can follow directions and understands most of what i say, but her communication is definately different and her sensory issues a nightmare...i would be getting him assessed asap.

Happy2be3

26-04-2009, 20:44

Thanks for your reply Naomismum.. can I just ask where would one go to have their child "assessed" for the spectrum?? And do they assess kids as young as 18 months.. cuz as lots of ppl keep pointing out to me ;) "lots of kids walk late" "lots of kids talk late" "lots of kids hate getting their hands dirty" etc etc etc.. I guess teamed with the feeding issues..

naomis mum

26-04-2009, 21:17

you need to go to a peadiatrician who will either diagnose him himself or send you to a developmental pead for diagnosis. you can also see a clinical child psych, but this needs to be in conjunction with a pead for ASPECT to recognise the diagnosis for funding purposes. 18months is early to diagnose as alot of development is still early but i dont think it is unheard of to diagnose that early...they may just keep an eye on him or diagnose with PDDNOS in the meantime until a full diagnosis of autism can take place. I knew naomi was asd from 12months of age....but it wasnt until 3 that we got a formal diagnosis and you willl come across some drs that wont diagnose that young. so i dont think it is too early. PM me if you have any questions. where are you located?

mummycloud

26-04-2009, 21:45

Hi everyone :)
I have 4 children aged between 18 down to 3 years old. My special needs child hasn't got severe problems like some of your wee ones, but nevertheless she is special (arent' they all though? ;) )
She is 8 years old and very tiny, she had suspected mild hyperreflexia when she was very young, with low muscle tone which meant she didn't walk till she was 3 and needed help with physiotherapy. She also has a problem with her joints being very loose which means her elbows have dislocated many times with little effort. It's easy to pop it back in though thank goodness.
My 3 year old son also didn't walk till he was almost 2 so we thought he had the same problems.. he shares other symptoms with her also, but doesn't have her main diagnosis which is Epilepsy.
Her seizures are uncontrolled. She has a few a day which is an improvement from a year ago when she was having up 40 a day. She has 2 types of seizures which are complex partial and generalized absence.
Since her seizures have become less frequent her delays have improved but she still has terrible problems with her post-ictal (the phase coming out of seizures) phase which makes her violent and unconsolable. Fortunatley this is only a problem a few times a day now, so she can function pretty well with normal social activities. She goes to a Steiner school and is finding a less mainstream environment easier to cope with especially with the smaller class sizes and the one teacher right through primary school.

Cheers

lisa mum to 2 busy boys

31-05-2009, 10:47

When I first joined I came on with the intention of making new friends but wanting to speak to other people with SN children and know I'm not alone as thats the way I kinda feel right now not knowing anyone else with SN children, but the large forum was a bit over whelming so this is great!!!! gonna post this b 4 i tel my story as i dont want to write heaps then find it didnt work as im new to this. so hi everyone:wave: cant wait to chat to you all

lisa mum to 2 busy boys

31-05-2009, 11:04

Hi my name is Lisa I live in Lismore NSW, I'm 24 and have a wonderful Husband Anthony weve been together since highschool and have 2 beautiful very busy boys.Logan is almost 3 and Blake is 14mnths old, both were hard pregnancies and labours (ceasars with complications). But with having endometriosis we are soo lucky to have two babies soo early in life without help:):yelclap:. Logan...I had a retained placenta so never got to breastfeed, he had jaundice and just missed out on the special care nursery thankgod he was also 3 weeks early after preclampsia.he has acid/silent reflux and was lactose intolerant but undiagnosed for the first 5 mnths (that was a nightmare) he had random undiagnosed food allergies which we thought he had grown out of everything till he was alomst 2. he was a lways a difficult child we thought he was just high maintanence. it all started with a speechdelay then it turned into autistic tendanices, sensory procesing disorder, mainly auditiry,tactile,oral input, sensory seeking and avoiding,.he only has an on or off swithch.:)
Blake...after 2 premi labours was born by ceasar then the milk allergies and reflux started again i thought we can do this itl b the same but we were wrong it turned out to be milk protein allergies then corn which is maize, malt, dextrose etc etc etc, grass, suncream, soaps body washes ....waiting for more. he has a hearing loss, speech delay, globa dvelopmental delay and behaviours like logan but we have to wait and see if hell grow out of them.
just had my third operation for the endo so while im recovering thought id love toc hat to other ppl who understand what its like to live with beautiful SN children as when i speak to ny friends and other mothers they say yes i understands but i know they dont really as they can take their children out in public alone,their child sleeps instead of screaming all night,breaking things hurting ppl,they dont have to worry too much bout if what theye at will make thm sick for days.:ecomcity: im ranting sorry but finally want someone to tlk to that understanfs as they have been through it:shakehands:
ps: i have lovely supportive friends but they just dont quite get it.

naomis mum

31-05-2009, 13:08

Lisa...pop into sn chat thread and type away!! we are there to listen..xx

ReecesMum

31-05-2009, 14:01

Hey most of my story you can get throught the link at the bottom of this page..............but heres the short of the long lol.

I'm a single Mum just of recent and my son Reece is 3 years old and suffered from lack of blood and oxygen to the brain during labour resulting in Hypoxic Ischemic Encephalopathy(damage to the brain and central nervous systems).He also has an absent Septum Pellucidum (missing part of the brain) caused from a rare mutation in the HESx1 gene and in turn causes Septo Optic Dysplasia(under developed optic nerves).He is legally blind has no central vision only periphial sight.He has been given the overall diagnosis of Cerebral Palsy.He also has Global Developemtn delay he cannot walk,talk,crawl,sit,hold,eat etc he basically functions at anywhere between a 1-6 mnth old level.He is currently on NG feeds and in the process of a Gastrostomy.He is also due to have surgery in November for hip dislocation to prevent curvature in the spine and a chronic pain condition.He also has severe sleeping issues and i have spent the last 3 years in sleep deprivation along with him.

He is a happy little boy at most times but as all of our kids probably do he has his days.I live in fear of him dying but i also live in hope that he will be strong enough to get through it all.He is my everything,my world and without him i wouldn't know what to do.

My heart goes out to each and every SN parent as it is such a trying time raising our children but its our love for them that makes them who they are cause without us who would love them like we do.

xoxoxoxoxo

lisa mum to 2 busy boys

02-06-2009, 19:36

hi i took blake to our new pead today and he feels that blake may follow in logan's footsteps with having similar issues, sensory procesing disorder and autistic tendancies,(blakes only 14mnths so its hard to tell) he feels its hereditary in males. we want more children. wondering what other ppl think and their experiences if one child has those issues is it more likely to have mutiple children with them? blake already shows some auditroy and high pain threshold shut down issues.very late in speech and interaction. any info about it being passed on in familys or experiences would be appreciated

ReecesMum

02-06-2009, 20:12

Sorry Lisa mum to 2 busy boys but i am unable to tell you if it can be passed on to further children.It might be hereditary as i do have an ex in law who has been blessed with 4 girls and thank god for that as the issues are only passed down to the boys.So i guess what the paed is saying can be possible but im no doctor best thing i would is google it and see what you can find.I would like more children in the furture but as much as i believe most of Reece's issues are due to the hospitals neglegence i do believe it isnt gonna happen again but will take precautions like genetics testing to be safe.Sorry that i couldnt help but i do hope you can find the answers you seek.

xoxo
Lea.

BB78

03-06-2009, 09:33

Reading all the replys you mums are all amazing :hugs:

I'm new to this section, I am bev I'm a SAHM with 8yr old twin boys, 6week old daughter and my son Bren who has Autism.
He has only been diagnosed this week so it's still sinking in even though I kind of knew since from about 14mths of age (He will be 2 next week)

Some days are better then others (as you all can relate too) most are full of bren screaming & head butting the floor & keeping his routine perfect to try & keep him calm.. most days I am exhausted from Bren & my DD.

I am looking forward to getting to know you wonderful mums & talking which I finds help.

I also have a group on Facebook for mums with children that have Autism to chat & meet other mums. Here is the link.

http://www.facebook.com/group.php?gid=89351843307

BabySummer

04-06-2009, 09:06

Hi all, my name is Nicole and my 11 week old daughter Summer was born with Pierre Robin Sequence (small jaw and cleft palate). This caused her to have respiratory and feeding problems. It was a real shock to have a baby with special needs, not being diagnosed during labor. The hardest part was wondering when she would ever be able to come home and I had a hard time being told I could never breast feed.

However she did come home from hospital after 2 months not needing jaw distraction surgery. Her only issue now is feeding which is done mostly via NG tube and small amount via bottle.

After reading this thread I feel very lucky that Summer's needs seem small to what all you ladies have been through. So thank you for your posts.

hansmummy

15-06-2009, 16:54

Hi my name is Cheryal :wave:, I am a stay at home mum in brisbane, My 2 older boys have grown up and flown the coup 26 and 25 and I have 2 special needs children, TJ is my biological 10 year old (surprise at 35) and Han is my 8 year old special needs Foster daughter.
Han's Dx is Retts Syndrome - Epilepsy, reflux, in a wheelchair, needs full assistance with everything, non verbal, Gastronomy button feeds and incontinent, attends a special school.
TJ's Dx is Neuromigrational disorder - Epilepsy, Non verbal, cerebal palsy, microcephaly, Cyst on the brain, Oxygen deprivation at some stage, Incontinent, GORD, Motility issues top and bottom, prolaspsing bowel, Jejunosotmy feeds, Mace procedure with a chait trapdoor button for bowel flushing, Cortical vision impairment, Anxiety disorder, OCD, sleep issues (he doesn't need it but I do), Pain issues, full assistance with day to day cares, but can walk,:ecomcity::ecomcity:, that's all I can think of right now.
I find life with Disabilities is a very lonley existance, my friends all dissapeared and I would love to make new friends and just to be able to chat with other mums that understand would be awesome.
Thanks for reading my post and I look forward to chatting with you all soon.

naiwen

15-06-2009, 18:35

Hello everyone that has introduced themselves since I last posted.

To update DS now also has sensory processing disorder, delays in all areas apart from gross motor (yay!), but his reflux is now well and truely under control so that's a bonus.

Having a child with SN can be so isolating and that's why these online communities are so valuable I think.

Welcome!

kiwibird27

16-06-2009, 07:42

Hi guys

I'm Stacey my 3 year old has a rare metabolic condition known as Congenital disorder of glycosylation 1a. She has lots of medical issues, cirroshsis of the liver, hypoglycemia.....:ecomcity::ecomcity: and is tube fed, cont overnight and very small bolus feeds during the day. she wears hearing aids and glasses, she is nearly sitting up (been saying that for 2 years now:laughing:), and rolls around the house, she is very clever and very happy. Think thats it!!!

TinyTiger

16-06-2009, 10:01

Hi There,

I have just joined Bub Hub :wave:

I have a 21 month old who was born 8 weeks early. He has Hydrocephalus and Cerebral Palsy, but at this stage an official CP dx hasn't been given as his paed wanted him to have at least 6 months without brain surgery (he has had about 18 surgeries on his brain plus others) so that he could be sure he made the correct dx in relation to the type of CP. It has been 7 months now :thumbsup: so I guess an official dx isn't far off!

I am looking forward to getting to know you all :)

mytwoangelsC&A

28-06-2009, 20:53

Hi all i've been around for quiet a while but never type much on SN chats as i know my daughter is not as hight needs as a lot of your kids. She will be two in August and was diagnosed with turners syndrome at 7 days old under went open heart sergury at 9 days old. We have numerous medical appoinmnet to monitor and checkup and seem to be getting on top of things when they find something else wrong. She has just got glasses 2 weeks ago to try help correct her eyes and we are about to head down the path of growth hormone.

boysrgr8

01-07-2009, 08:43

Hello, :wave:

I am Emma, I have 2 boys, Bryce is 5 in Feb and Heath is 1 in Oct

My gorgeous boy Bryce has Down Syndrome :rolleyes: yep know that isn't a surprise given how common it is, and my other gorgeous boy Heath started to have seizures at the age of 5 months and is still not diagnosed with anything yet.

I suppose I should give a break down as every child is unique, even ones with DS!
I was a single mum with him from 3 mnths till he was almost 3. I was 'missed' when I had him and didn't have any professional help with him until he was 6 weeks. We then started Allied Health and SEDU from then on. Bryce has an ASD (the heart type) which should be getting repaired in Oct (3 days before DS2 1st birthday). He did most of his gross motor things (smile, clap, crawl, sit) only a couple of months after 'normal' kids :smiliedance: and started to walk when he was 22 mnths with the aid of orthotics. He has lovely speech (most of which only I can understand :D) I started to sign with him at the age of 12 months and feel this was our saving grace of many tantys.
So now that he is getting older it is just a waiting game of what he will be capable of doing.

So now Heath has been having seizures!
He was meant to be the no issue baby but it looks like life isn't that kind!
The day he was 5 months I was bf him and put him on my lap to change sides and he went vague, blue around his lips and irregular breathing. When the ambulance came he was fine again so they said it could have been an air bubble. The next day I was out to coffee with my SEDU mums and he had another episode, one of the mums said that looks like a seizure. I just lost it and started to ball. My poor friend, it was her birthday and we ruined the celebrations.
As the ambulance took us to the hospital he had a couple more turns but the officer felt they were nothing. Of course he was fine when the drs were looking at him and it wasn't till 5hrs later that he had one in front of the dr. I was so relieved. So that was a tuesday, by thurs night we were home, after a night in PICU and a night in the ward. I went home with a large bottle of Dilantin and a syringe, it was a bit of a slap in the face really.
The good thing was that it controlled his seizures until he had grown a bit more and had another 2 seizures where he actually had his feet and hands twitch and his eyes and head go to the right. My hope of it being a one off was dashed. Next step is unknown and although it is fantastic that he is controlled I wish I had a what next list as I do with Bryce.

Well that is it I think, until my next rant on the injustice of life and the lack of foresight in medical care. :laughing:
Will be good to have others to just chat to and not feel so very alone.

Glad I get to introduce myself as now I don't always have to say my catch cry 'my son has Down Syndrome....' :laughing:

mollyk99

01-07-2009, 20:56

I am new here today, and just posting to say hello.

My partner and I had happily waved the grown up children out the door with great glee when a family tragedy delivered us 3 more little ones, aged 5,4 and 2. The youngest has an Acquired (or Traumatic) Brain Injury and some significant challenges including right side hemiplegia (paralysis), visual impairment, speech impairment and has a titanium plate in his head and a VP shunt.

We've now been parents of five for two and a half years and having settled into the role, after the shock! - I thought I might start joining in on forums though I'm a bit nervous about it all. One thing I do know though - I've been parenting for 25 years and have a trick or two up my sleeve.

Looking forward to meeting new people and sharing experiences. I'd put one of those little smiley pictures in except I have no idea what they all mean!

boysrgr8

02-07-2009, 08:27

I am new here today, and just posting to say hello.

I'd put one of those little smiley pictures in except I have no idea what they all mean!

:wave: hello! It is great just to have other people to bounce things off! Hope you enjoy your time on here!

As to all those smiley pics, just hover over it and it will tell you what they mean! I love them, they are so cool! :D

mumx3littlies

19-08-2009, 14:22

:wave:Hi everybody. I will join in here in introducing myself. We have 3 children, our youngest has recently been diagnosed with Autism. I think we are coming to terms with it quite well but other people seem to struggle with it more than we do! We are just trying to muddle our way thru all the paperwork etc that goes with getting assistance for him. Anyway hope to pop into SN chat when I get time.:)

pubclaud

29-08-2009, 18:04

Hi, I'm another new one, very little experience in forums so please bear with.
I'm mum of 3 - 2 girls (6 & 4) and 1 boy 8wks who has a few issues. I had a 36 week scan to check my placenta (which was low at 20wks), and they discovered a cyst in his brain. Like "LoopyLinda", this is due to agenesis of the Corpus Collusum. His cyst doesn't need to be removed but he may need a shunt to relieve pressure when the fluid begins to build up. Careful monitoring by Neurosurgeons for this. They did tests (MRI, ultrasounds, bloods, stimulation, blood sugar, etc...) when he was born and discovered that he also has a condition called MPHD (Multiple Pituitary Hormone Deficiency). Presently he has confirmed Adrenal Insufficiency which means he doesn't produce enough stress hormone to cope with illness or stress and has 3x daily meds and a needle that we're required to give in case of more serious illnesses. He is still undergoing more tests and monitoring and it's probable that he will need growth hormone and thyroid hormone as well. Such a rollercoaster, and I'd love to be able to communicate with other mums! :)

mitomum

02-09-2009, 11:45

Hi all,

I am soooo glad to have found all "the other mums".. so this is where you hang out!
Intro my name is Penny I have 4 beautiful kids and our youngest Gabby has a Mitochondrial Disorder that is still not diagnosed her symtoms are servere cardiomyopathy, nephrotic syndrome, LVAS, bilateral hearing loss, gastrostmy, hypotonia, development delay ect and I almost forgot ..red hair :). But all that doesn't stop her wicked sense of humour!
So glad to have found a friendly sounding board that understands.... looking forward to many fun days and nights

naomis mum

02-09-2009, 13:14

HI penny:wave: welcome to our group...some of us are on very intermittently lately so i am glad you popped on while i was watching!!

There is another mum on here (mikenziesmum) who has a 3 year old daughter with an undiagnosed mitochondrial disorder...yet to be confirmed by biopsy. She might pop in. I know alot about mito given i have a best friend with two mito boys (one since passed away) and have researched alot into it as we first thought our DD may have it too.

My DD is 3 and has a chromosome deletion on chromosome one and autism. She is a delight although a challenge! she also has strawberry blonde hair (verging on the red!)...is that a mito trait lol or did you throw that in for good measure? ;)

Some days we just vent away as lives like ours are really hard and stressful, but remember that we are extra blessed with our precious kids..we learn so much more about what matters that other people simply would never understand.

Pm me if you want to chat!

Nic

mollyk99

03-09-2009, 07:06

Hi Penny,

Yep, this is where we hang out, as Nic said, we're on intermittently but speaking for myself I usually manage to get my eye on this forum at least every day and say hello if I can.

We don't have a Mito disorder but as Nic said - PM or post any time if you need to talk.

Bel1978

07-10-2009, 07:37

Hi guys I'm bel married 30 with 2 kids sienna may 07 and Jarvis may 08. Sienna has recently been diagnosed with PDD-NOS she now goes to pre school 1 day a week and speech therapy 1 day a week in the last month of starting speech she has come along way, she said her very first sentence this week "pup sit down" to some at 2.5 years this is nothing to us we were very proud.

madtaybub

24-10-2009, 03:47

Hi I'm Beck, i'm a single mum of 3 girls Maddi 5 my eldest has no health issues, tho Tayla 2 has mild asthma, excema or dairy intolerance and has recently started having absence seizures the first was the most scariest day of my life as not only did she zone out but had no control on any muscles in her body :( and then there is Lucy 1 she has Raynauds disease and her blood work came back with signs of lupus, she also has an atrial septal defect...... Although it sounds like alot so far things have been not so scary asides from Tay's seizure wednesday

jembelina

11-11-2009, 19:44

Hi. I am a long time member, but am completely new to ths section. I have 3 little people in my life - Zack4, Leigh 3 and Evie who is 10 months old and was diagnosed wih Leukaemia(infant ALL) nearly a month ago.
Since then our world has been turned upside down as we all come to terms with it. I am in hospital with her atm, breastfeeding around the clock while we wait for her levels to come back up after her first round of chemo.

I am so glad this section exists! Looking forward to chatting!

TacoFest

10-12-2009, 19:21

Hi everyone :) my name is Leah and I have a 5 month old dd briella who is deaf. Look forward to getting to know you all.

Bel1978

11-12-2009, 07:25

Jenbelina that sounds horrible when is her 1 st round of chemotherapy

Hi lululeah what's the next step with bub being so young?? As in treatment

jenpeterock

22-12-2009, 09:40

hi everyone,
ive been on bh for a while now, but i didnt find this group till last week!

my daughter evelyn is nearly 5 months old and she had goldenhar sydrome.
at the age of 3 months she had open heart surgery for an avsd and one main av valve.
her left ear has microtia and artresia, which means she has no ability to hear out of it. and her right ear has a servere conductive hearing loss (she has the cutest pink hearing aid!). as a side effect of her surgery evie has developed epilepsy and is now medicated. her heart suffers from svt (heart rate continuously cycling thro from 110-230) and she is also now medicated for that. evie also has a portwine birth mark over her left eye, which can affect the blood vessels of her eye, but so far doc dont think it has affected her vision.

goldenhar mainly affect one side of a persons face, evelyn has been very lucky, as the left side of her face is smaller than her right but it hasnt affected her ability to move her month, how ever if the leftside does not grow in porportion as the right she will need to have a jaw extraction. Evelyn also has a moderate case of scholiosis, but the docs cant tell how bad it will get until she is older.

even tho she has been thro so much already, she is a fantastic little munchkin and my partner and i r wouldnt swap her for the world. we are just very thankful that she isnt mentally delayed. we dont think of her as disabled (i hate that word, it implies she is restricted in her ability) but we just think of her as more high maintance!

boysrgr8

22-12-2009, 19:29

Hey Jen, I am in the Special Needs thread too. Nice to have you here. Mwah!!:wave:

jenpeterock

23-12-2009, 00:10

Hey Jen, I am in the Special Needs thread too. Nice to have you here. Mwah!!:wave:

Hey yes, lol i never scrolled down past the state chats! theres a whole new bubhub i have discovered:devil6:

i never really posted anywhere except heart mums thread anyways, cause i didnt really feel comfortable cause i found most chats too controversial - home birth or hospital birth, drugs or no drugs etc etc etc, it drives me insane! people who are so certain their way is the best without even doubting their having a healthy chubba bubba, maybe its jealousy i dunno, but gosh some ppl are so naive and have the "oh it wont happen to me". anyways it nice to find a place where i think i might relate to everyone more, and theres even a gardening thread!!!!!! im such a nerd :rolleyes:

hope B-BOY is well, we should catch up after the new yr:thumbsup:

and to everyone else, HI and Merry Christmas :santa:

jen

boysrgr8

24-12-2009, 00:28

You are so funny Jen. B is doing awesome!! We would love to catch up with you in the New Year. I will FB you.

I agree with your feelings, it could be jealousy or it could be that we now live in a world where bigger things matter. It sure is a funny world!

Enjoy your Christmas. There is a sticky that mums post in to update, under the Parents of Children with Special Needs header.

Much love to you and E!! :santa:

Bel1978

28-12-2009, 16:55

Where are u all located??

jenpeterock

29-12-2009, 07:42

wynnum/manly area and all of evies care is through the mater childrens:thumbsup:

supa_star323

10-01-2010, 21:11

I'm in Miami, qld. And since my last intro ds has been diagnosed with Pdd-nos

myhusbandswife

02-02-2010, 18:26

Hi! Im a new Mummy to baby Emily. She is 11 weeks old and has Bilateral moderatley severe sensorineural haering loss. She wears cute little pink hearing aids. she is having so much fun pulling them out and laughing when mum gets annoyed! http://www.facebook.com/photo.php?pid=3325286&l=5e00623117&id=514711235

nomad1

17-02-2010, 12:38

Hiya, I am very new to all this. Have 3 month old bub who was born with bi-lateral congenital cataracts, had double lensectomy at 9 weeks, has contact lens in both eyes and intensive rehab. I am relocating back to Perth in April from Brisbane and wondering if there are any other mums out there with kids with same condition? Would love to establish contact
Estella's Mum :-)

ladybug270809

30-04-2010, 10:46

I am really new here, just signed up yesterday. I actually discovered bub hub when I was doing a search on birthday parties. I found it to be really helpful so I thought I would join up!

I have a daughter who is 8 months old, my first - and she is just an angel. We found out when she was 6 weeks old that she has a hearing impairment. She is profoundly deaf in her left ear and severly deaf in her right. She now has to wear hearing aids all the time, for the rest of her life.

Although we have adjusted to it now, it was absolutely devastating when we first found out. I was concerned with how it was going to effect her socially as she got older and whether or not she would be bullied when she went to school. It is funny how at times like that you think of the most bizarre things. But I had a hard time growing up and I was really socially awkward when I was at school so that was the last thing I wanted for my daughter.

She is still the same beautiful baby girl and there is nothing wrong with her except for impairment.

It has been a big thing though, first baby, newborn, trying to get a handle on things, then you find out that something is wrong. So then there were appointments with audiologists, ENT's, paedetricians, eye doctors, intervention programs. It has been hard, especially now that I am back at work and my partner and I are trying to juggle Audrey and all of her needs with having a normal sort of life.

myhusbandswife

30-04-2010, 15:08

ladybug270809

03-05-2010, 08:50

guildford nsw. what about you?

myhusbandswife

03-05-2010, 08:53

guildford nsw. what about you?

Near Penrith

ladybug270809

04-05-2010, 09:04

that isn't far at all! whats your "situation" with your bub?

myhusbandswife

04-05-2010, 09:06

Emily is almost 6 months old. She has a moderate bilateral hearing loss. She also wears hearing aids. So no where near as much of a loss as your daughter.

Do you know what caused yuor daughters hearing loss?

ladybug270809

05-05-2010, 09:05

apparently it was genetic. both my partner and i were carrying the gene and unfortunately passed it on to audrey. we now know that we have a 25% chance of the next one having a hearing loss. i don't think i would really be that phased if our next child has an impairment (unless it was worse). we now know what to expect and how to deal with it.

what caused emily's hearing loss?

myhusbandswife

05-05-2010, 09:28

We dont know. We were the unlucky ones that didnt find a reason. They gave us a 1/6-1/10 chance of the next baby having hearing loss. And like you it really wouldnt bother me because I already understand it all now. But now we are TTC number 2 and Im already scared for the SWISH test at the hospital

ladybug270809

10-05-2010, 09:03

TTC? sorry, not all up there with the lingo. Of course you are going to be apprehensive when the SWISH test pops up again, not for your own sakes but for the sake of the baby. You want them to be perfect. If they have a hearing loss, you will deal with it in your stride but you are going to be upset for bub because it isn't fair to them. It is a completely normal feeling.

myhusbandswife

10-05-2010, 09:09

TTC mean trying to conceive.

I know Ill deal with it if and when it happens.

Where do you go for your Early Learning Program? We go to RIDBC

ladybug270809

11-05-2010, 09:07

ttc - of course, that makes sense lol.

We go to the Catherine Sullivan Centre at Strathfield.

Fox in Sox

16-07-2010, 16:54

Hi,

I just introduced myself in the general section, but thoguht I'd do the same here. I'm Mandy, Mum to three, step-Mum to two and wife to one. I live in country SA.

My youngest daughter Ella, who we call the Supergirl, has Down syndrome. We found this out two days after she was born, so needless to say, the past year has been an incredible learning curve. Although having a baby with Ds is not something I would have chosen, our family has experienced some amazing moments, and we've met some fabulous people because of having her.

We are incredibly lucky that so far, she seems to have escaped the many health issues which can affect bubs with Ds.

Look forward to getting to know you all.

boysrgr8

18-07-2010, 21:24

Hi Fox in Sox! My son was born with Ds 5 years ago, I completely relate to so much of your post. Lovely to *meet* you.

aymee83

28-07-2010, 13:48

Hi to all, my name is Amy, i have 3 kids, kobe8, Zac 6 and Anaia 1, i am preggo with no 4, Zac was diagnosed with Asperger's, ocd, sensory processing disorder & adhd just before he turned 6, i went to several psycologists and they said it was "just ADD" i knew there was more to his unusual behaviours, he is so smart, can read well and is particularly good at maths, he keeps me on my toes and i woul not have him any other way!!!

boysrgr8

30-07-2010, 23:14

Hi Amy! :) Welcome.

mummymelissa

15-08-2010, 18:19

Hi All

Im Mel, mum of 3. Zakaree is nearly 5 and is my ASD angel. I also have Saxon who is 3 and Ava who is 17 months.

Zak was diagnosed at 2.5 years. It took a long time for any professionals to take my concerns seriously. Zak lost all the language he had at about 18 months of age.

At the end of last year Zak had a developmental test done to see where he was at before starting Kinder. The lady that did this test was not the one that diagnosed him and after spending very little time with Zak she decided she wasnt entirely sure that he was autistic. So now we have 2 go back down the long road of specialists, tests ect. However they want me to wait until i have used all of my FACHSIA funding.

So at the moment we are just cruising along not really knowing what 2 expect.

It took my husband and i awhile 2 get our heads around the autism diagnosis but after alot of help and research we have come to terms with it all and now we are back to square 1. Not to worry tho because no matter what label they put on him in the end his still going to be the same gorgeous Zak.

Im looking forward 2 chatting 2 u all.

Have read some of your intros and i must say u are all very strong women.

alpacamum

10-09-2010, 23:48

Hi ladies

My DS was born in Feb of this year (now 6 1/2 mths). He was diagnosed at about 6 days with Rubenstein Taybi syndrome. It is a rare gene disorder associated with the 16th chromosome, and W was diagnosed from his characteristic appearance, broad thumbs and toes, and undescended testes.

Individuals with RTS often have issues with sight, hearing, internal organ dysfunction, many are non verbal, have poor muscle tone, feeding issues, are small for age, have development delays and varying degrees of learning difficulties.

Apart from some kidney issues (he only has one and there was a blockage requiring surgery at 14 days) some initial breathing and an angulated thumb, my little trooper has done awesomely well, on solely breast feeds from 3 weeks of age, growing well, but we are starting to see the differences with other babies of the same age, mostly his size (he is a little bubby still) and i think soon with development. We are so so proud of everything he does but it's about now I would like to talk to parents of SN children as I am feeling ready to recluse ourselves but don't want to - if that makes sense?

My little man is a constant delight and I love him to pieces! But sometimes there is fear of the future and what it may bring and I hate that it is there.

You mums (and dads) in here sound amazing and I can't wait to join in with your chats. I might be a bit behind on some of the terminology but look forward to learning.:wave:

kathbubz05

04-10-2010, 21:50

Hey guys! So this is still a little hard for me to write as i am sure some of you would know, its a different thing dealing with it everyday, then actually writing it. I will probably tell you a simple version of what has gone on and write it somewhere else in more detail, because it is a really confronting but such a great story, and not many people are aware of the condition, and if you would like the name of the condition i can tell you. But mainly here i will tell you a little bit of what my little girl has been through, you should keep in mind she has an older brother and i think i might have to get him checked out but that's another story and sorry for my rambles. So anyway i noticed my little girl at around 6months that she was not 'normal', long story short, she was having seizures, not keeping food down etc, finally got her medicated. She was still having seizures, all her development had stopped and her emotions were gone. Kept trying her with different meds, she still continued to have seizures but they become less and she started rolling and crying and laughing which was such a good sign for us. We have regular hospital trips, doctors appointments etc. We have currently just undergone a major surgery to remove her seizures to try and help her develop, and although it has been good so far, but she is still so developmentally behind, doesn't speak words cant sit her self up although she can hold her self up(sometimes), she can't crawl or walk, we do no know what her future holds. She is really a great little girl and their may be other complications with her condition but i just take a day at a time and i try and hold on to the good things, I look forward to getting to know you all=)

naomis mum

05-10-2010, 23:49

she hasn't got GLUT1 DS does she?

Iggymummy

24-11-2010, 19:44

Hi Everyone,
After reading all your intros I feel so pathetic writing about my son. He has ADHD and some sensory issues. He is almost 4 and it has been a fairly challenging experience due to his impulsivity and I guess fairly isolating as it's hard to take him anywhere.
I live in the Illawarra and would like to start a Playgroup to meet other mums with SN's kids. I'm new to all this posting so sometimes don't get all the abbreviations! I'm a social worker as well and if any of you would like me to help you in whatever way I can ( resources, carer stuff ) I'm happy to try & help. Look forward to chatting to you all. Louisa

boysrgr8

28-11-2010, 19:27

Hi Louisa, everyone walks their own journey and yours is very valid. Hope to see you around. :)

tietanyan

29-11-2010, 22:07

hi all, im pretty sure i was in here at the beginning of the year, but i havent found anyone that looks familiar!! anyway, i have a little boy, Jethro, was diagnosed with CP in april, going really well, waiting on funding for a trampoline for him and waiting to hear from the childrens hospital in sydney, so we can get an AFO, would love to chat and catch up with everyone, as it has been a long time since i have been on here, im also on MSN, facebook and skpe, and email of course, take care all hope to chat to you all soon
Jess

Taylor & Lachlans Mummy

29-11-2010, 22:55

Hi All,
Compared to some my little man's needs seem quite mild, and after reading all your stories think each and everyone of you is doing a fantastic job.

My little man will be 7 next week and for the past 2 years have been trying to get some éxplination' and understanding for a few of his issues.
This year we have finally had some break throughs,we have been given some answers which has allowed us to understand and help him.
He was diagnosed with borderline IQ academicaly but high IQ mechanically (if that makes sense) high anxiety, delayed verbal communication and can be quite hyper.
Thankfully the teacher he has had this year has been fantastic with him and worked wonders in some areas of his reading, at the begining of the year he could only read and write his name, now he is able to read, write and spell roughly 10 different words including his sisters name which he is so proud of.
Having the high anxiety and borderline IQ means days where I am a bully and he hates me. I have gotten used to this as I understand that that is all he is able to communicate at that point in time and usually 5 seconds after saying it he is curled up next to me for a cuddle.
Any change can be too much for him, this generally leads to pooed nickers, or temper tantrums. We have learnt by following his lead, if he needs to dig in the dirt he digs and can be there for hours, if he needs to build he can play with lego for hours on end both give him the opportunity to create his own santuary where everyone understands him.
At first I blamed myself as it wasnt till his father left that I had the strength to chase the answers to the questions I had had since his was tiny, and to me Lachlan was and always will be Lachlan no matter what.

Bel1978

03-12-2010, 06:54

Hi guys just reading your stories......

I'm bel I have a 2.5 year old diagnosed with autism and my DD was diagnosed pdd-nos..

mrsc84

12-12-2010, 00:35

I'm Lou, I have two sons who are 3 and 1.

My 3 year old has Sensory Processing Disorder and language delay closely linked to his sensory needs.

He is a seeker so constantly on the go. Sometimes it's hard finding people who understand- especially when it's family members- but I try and remain positive.

southcoastmum

12-12-2010, 02:19

Hi there, my 5 yr old DD has sensory processing disorder. I also have a 20 month old DD. I live in the Illawarra and would love to chat/ meet other parents.

kiz

31-01-2011, 11:03

Hi There! Compared to many of the stories I've read on here my DD's problems seem insignificant, but I'm certain this is the best forum for support and advice.
Bree is 6 months old (4 1/2 corrected), born at 32 weeks. 2 weeks ago we were informed that she has Cerebral Palsy. As she is so young we do not know what delays she will have as she develops. She is currently on mixed feeds, bottle and tube to help her put on weight. She has silent reflux which has just been confirmed with a scan showing a small hiatial hernia. Her development is delayed, but she has just started smiling in her own way and gooing :) She exhibits signs of Sensory Processing Disorder, but is hard to diagnose at this age. Perhaps the most difficult hurdle we have is that she has Seperation Anxiety to the extreme. I cannot ever leave her with anyone else as she screams and turns blue until I hold her. Everyone says she's just a mummy's girl, but I think there is more to it.
We (hubby, me, 3yo DS and DD) live on a property near Townsville QLD and I would love to meet people online and in rl that can relate to our situation :fami01:
Kiz

onkybear

31-01-2011, 12:37

:wave: I didnt realise this thread was here. I have no idea where to start so I will tell dds story. Chels is 2 and 2 months. She has always been a different kind of kid. Always happy, even when refulx was playing up. She didnt cry with tears until 6 months, which the gp said whe obviosly had no need too. From 6 smoth she could watch a full movie from start to finish without moving. Being nieve I thought this was great, I could cook or clean without bubs screaming. At 7 months she had a febrile convulsion due to a uti. Very scary. Then at 11 months she had her first allergic reaction and ended up in recuss. Another very scary moment. She was then allergy tested and turns out she is anaphalaxys to egg and has other minor allergies. From april 2010 through to september we had numerous hospital visits with bronchollitis and allgeric reactions we were at the gp once a week me begging to find out what was wrong with my baby. I just *knew* something was wrong. Then in end of july 2010 a gp who doesnt know my girl she he didnt think she could hear me so off to the ENT. She was put through for urgent surgery to have grommets in both ears as they were so full of glue there was no room left. The also removed the adenoids as they were so large they were almost blocking her airways. Explains why she snored since birth (I asked about that so many times and was told perfectly normal). But the surgeon decided to leave the tonsils in. We now have to go back this year for further surgery because they are twice the size they should be and she dribbles like a teething 6 month old. Anyway after the surgery the ent said that he thought she should see a pead as her balance didnt restore. Long story short dd was then diagnosed with autism, dyspraxia and possible global develmental delay and also a possiblity of an interlectual disability too. but we wont know thos last two things until she has been in thereapy for a few months. Through all of it she is still my perfect princess who I wouldnt change for the world. Wow what a novel but gee it feels so good to just get it all out. If anyone wants to chat Im here,

Kristy

Mum2Sierra&Caelyn

05-03-2011, 23:36

Hi All :).
I have an almost 4 year old (Sierra) and a 2 1/2 year old Caelyn.
We have suspected for a while that everything was not quite right with Sierra. She was very late smiling, she would stare a lot, and it was hard to get her to giggle as a baby. Then she took so long to start talking and has always been one to wander off and not come back when called, and outings with her were just impossible, especially somewhere that was crowded, or very noisy. She also has a lot of obsessive compulsive tendencies and a number of other things...
However she has 'good' days (although these are still stressfull, just not as much uncontrolled screaming), and so I guess I had convinced myself that the problem was my parenting skills and that the weird or bad behaviour was a result of that. Doctors always just told be to 'wait and see' if she would catch up, as she has always been behind in things.
Anyway, I wont go into everything, but we finally got a doctor who took us seriously and got referred to a few places, and this last friday got the diagnosis of Autism.
Everything is all so new, and we are just really starting this waiting game of specialists in who knows what!. I feel very overwhelmed at the moment :(
Although now I hope we can start getting help for my little girl and some support...

Would love to chat with other mums going through similar things with their kids.
I wasn't sure if this was the right place though cause I know there are so many of you going through much worse than me and my family.
Actually any info/tips would be great at this point!.

-Alison-

helicopter

25-04-2011, 18:54

kiz

25-04-2011, 21:17

Hi :) I am quite paranoid of public forums but would really love to connect with some other parents of SN kids so am stepping out of my comfort zone ;)

I have a five year old son with global delays, no diagnosis as yet. He attends special school (prep) in Brisbane. I also have a seven year old.

My five year old has had all the genetic bloods, MRI and other testings when he was 3 which have all been clear. So at this point we have no answers, but he is an adorable little dude and although he doesn't speak and is behind across the board he is loads of fun :)

:wave:

:bigwelcome:

Hi Helicopter,

I feel the same way. Public forums used to be quite intimidating for me too! Once you post something anyone can find it on Google :eek:
But when my bub was diagnosed Special Needs I decided her health and my sanity were more important then some stupid fear!! :yes:
Now you'll find me in here most days thanks to wireless internet and iPhone. I always have something I need reassurance with, just scroll thru the recent posts and you'll see :rolleyes:
Come join our chat in the sticky "Can we start a new Special Needs chat?"
Nice to meet you :hugs:

sweetums89

02-08-2011, 17:22

Hi everyone. My 3yo has ASD. As to where on the spectrum he is we are waiting on a full assessment. As well as some type of social disorder, well thats what the Child Mental Development person said. Me and DF had our suspicions, but for it to be confirmed makes it that much more real.He is an affectionate boy besides his violent behavior/tantrums, somewhat anti social behavior and not being able to speak. Its good to know there are other people out there and people to talk to and help support you through this difficult time.

mum2bubba

09-08-2011, 10:31

Hi I'm not sure if I am meant to post here or not. My 6 year old has a speech problem and it may be verbal dyspraxia (we're getting her assessed in Oct by a really good child's pyschologist) she may have motor dyspraxia as well. So I guess that means she's a sn child. :)

CrazySingleMama84

20-08-2011, 09:25

Hi all! Hope I can gate crash!

My 6yr old son is a SN boy... Right now no diagnosis but suspected Aspbergers and maybe some ADD/ADHD as well. His speech is behind and his learning at school is behind and he is a challenging little man! Every day is a fight with him.

sweetums89

04-12-2011, 01:48

Hey everyone. My 3yo DS was just diagnosed with Autistic Disorder. Still waiting for our journey to take off and for him to start therapies. He is a very bright little boy, who does not speak but loves video games like his dad. Glad I have people to talk to.

childadvocate

05-01-2012, 17:12

Hi everyone,

I am a student at UTS and was wondering if anyone will be interested in helping me with answering a few questions? :/ I need your opinions for a report I am currently writing on special needs education. Its aim is to prove that the Snoezelen Room (multi-sensory room) will be of great benefits for a special needs child with their learning progress. If it won't be much of a bother, will you please help me answer some questions? file://localhost/Users/sibanlimbu/Library/Caches/TemporaryItems/msoclip/0/clip_image002.png

Much appreciated..xx

Q1. Do you feel that education for special needs is an important or unimportant social issue? Please explain.

Q2. What does special needs education mean to you?

Q3. Can you describe when you first became aware of children with special needs? What were your initial thoughts and feelings?

Q4. Do you think children can benefit in regular classroom regimes (“inclusion”) or do you feel it will be more beneficial if they study in special needs schools that have professional guidance?

Q5. If there were an opportunity to aid these children with difficulties, would you volunteer to take part in it? Why? How would you help them?

Q6. “The government should focus more on mainstream education than special needs education”. How far do you agree with this statement? Please explain.

Q7. Are you satisfied with the amount of effort put in towards improving the learning environment for children with special needs? Why and why not?

Lil Lee Lee

01-02-2012, 21:00

hi all i am a single mother of two

8yr old girl with right hemiplegic cerebral palsy and
7 yr old boy with classic autism and dd.

My daughter was diagnosed with cp at the age of 13 months. due to an accident while i was pregnant.
affecting her right side only, she has regular therapy and botox every six months.

My son was diagnosed at the age of 4 though presented symptoms at around the age of 2-3 yrs.
he is non verbal also and attends a special needs school.

And one on the way due 11/7/12 :)

lovely to meet you all :wave:

Prickle

02-02-2012, 20:58

Hi Lil Lee Lee and welcome... sounds like you've got your work cut out for you. My daughter has CP too, hers is spastic & dystonic quad level 4 but when she's sitting down you'd never know. She can talk the leg off a chair, lol.

Is your daughter very affected? You must be exhausted by the end of the day coping with two lively young ones as well as being pregnant (congrats btw).

I hope to see you around the place and look forward to chatting with you some more. :)

Lil Lee Lee

04-02-2012, 10:55

Hiya Prickle :wave:

hehe yes my daughter is much the same these days, talks and talks LOL... she also has dystonia to her right side... very mild also compared to what she was a few years ago... she didnt walk until she was four, little trooper walked 2 days before christmas, it was amazing!!! :)
Most of people can't tell unless she's wearing her splint :rolleyes: and even then they think shes broke her leg LOL!

I do ok actually, exhausting tho yes hehe I'm not even sure how i do it all but i just do hehe, thanks for the congrats, yeesh, ive only got a little over four months to go now ,but it is very exciting...:)

Lovely to meet you too and hope to chat with you again soon :wave:

Leztanelly

07-02-2012, 11:11

Hi,

I'm 35, and consider myself lucky to be the mother of a wonderful 4 year old girl who at 7.5 months old got sick. At the time I called the health maternal nurse & doctor. They disregarded my concerns when she first got ill. Most likely thinking me to be a neurotic first time mum.

As it turns out, after a day spent running around trying to get someone to look at her, I ended up in Box Hill hospital (it was closer than RCH & I was running out of time) with a baby showing signs of Pneumonia. In fact by the time I got to the hospital I was administering 1st aid in the emergency triage ward. They saw her immediately. It turns out she didn't have Pneumonia, she had Meningitis (bacterial). So this neurotic Mum is very happy to be able to tell you about her beautiful girl. Because I came so very close to loosing her.

3.5 years later she is currently under going assessment to see if there are further issues going on other than the ones we already know about. I join this forum, in tears, exhausted, hurt & angry for my daughter that has in many cases been overlooked, despite my efforts. I have found this system to be vile & completely of unsupportive of the child & carers' of that child. (I have sneaking suspicion that I'm one of many to feel this way.)

I would love to hear your stories, adventures, laugh, cry, even yes scream and compare notes.