+ Reply to Thread
Page 5 of 12 FirstFirst ... 34567 ... LastLast
Results 41 to 50 of 111
  1. #41
    Join Date
    Nov 2005
    Location
    Sydney
    Posts
    3,181
    Thanks
    0
    Thanked
    0
    Reviews
    0
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 posts
    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..... 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), and rolls around the house, she is very clever and very happy. Think thats it!!!

  2. #42
    Join Date
    Jun 2009
    Posts
    10
    Thanks
    0
    Thanked
    0
    Reviews
    0
    Hi There,

    I have just joined Bub Hub

    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 so I guess an official dx isn't far off!

    I am looking forward to getting to know you all

  3. #43
    Join Date
    Jul 2007
    Location
    lilydale
    Posts
    670
    Thanks
    0
    Thanked
    0
    Reviews
    0
    Achievements:Topaz Star - 500 posts
    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.

  4. #44
    boysrgr8's Avatar
    boysrgr8 is offline living with a constant look of OMG!
    Join Date
    Feb 2009
    Location
    Brisbane
    Posts
    746
    Thanks
    28
    Thanked
    41
    Reviews
    0
    Achievements:Topaz Star - 500 posts
    Hello,

    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 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 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 ) 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.
    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....'
    Last edited by boysrgr8; 01-07-2009 at 08:25.

  5. #45
    Join Date
    Jul 2009
    Location
    Northern suburbs, Melbourne.
    Posts
    142
    Thanks
    0
    Thanked
    0
    Reviews
    0

    Default This is all new and strange...

    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!

  6. #46
    boysrgr8's Avatar
    boysrgr8 is offline living with a constant look of OMG!
    Join Date
    Feb 2009
    Location
    Brisbane
    Posts
    746
    Thanks
    28
    Thanked
    41
    Reviews
    0
    Achievements:Topaz Star - 500 posts
    Quote Originally Posted by mollyk99 View Post
    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!
    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!

  7. #47
    Join Date
    Feb 2007
    Posts
    1,821
    Thanks
    0
    Thanked
    0
    Reviews
    0
    Achievements:Topaz Star - 500 posts
    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.

  8. #48
    Join Date
    Aug 2009
    Posts
    1
    Thanks
    0
    Thanked
    0
    Reviews
    0

    Default first post - ever!

    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!

  9. #49
    Join Date
    Aug 2009
    Posts
    9
    Thanks
    0
    Thanked
    0
    Reviews
    0
    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

  10. #50
    Join Date
    Dec 2007
    Location
    South Sydney
    Posts
    812
    Thanks
    0
    Thanked
    2
    Reviews
    0
    Achievements:Topaz Star - 500 posts
    HI penny 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


 

Similar Threads

  1. Replies: 13
    Last Post: 04-04-2012, 09:49

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
FEATURED SUPPORTER
Shapland Swim SchoolsSemi private learn to swim classes for a maximum of 3 children in specialized heated teaching pools. Our swim schools ...
REVIEWS
"Made bed time less anxious"
by Meld85
My Little Heart Whisbear - the Humming Bear reviews ›
"Wonderful natural Aussie made product!"
by Mrstwr
Baby U Goat Milk Moisturiser reviews ›
"Replaced good quality with cheap tight nappies"
by Kris
Coles Comfy Bots Nappies reviews ›