DownSyn Forum

CharliesMum · Posted: March 31 2011, 4:26 AM Post subject: Hello from Bedford England

Hi everyone, it is lovely to find a forum like this at last! My son Charlie is 20 months old and has DS. He is an absolute joy and we love him to bits, but things have not always been easy. Charlie developed West Syndrome (infantile seizures) at 5 months old and was very ill. Fortunately, a treatment was found that worked for him (ACTH) and he has progressed very well since then. It is wonderful to read everyones experiences and to be able to access so much information that unfortunately is not really forthcoming from the professionals, it is sometimes better to speak to people who have gone through and are going through the same things. I have posted a questions on the health issues side of the site under West Syndrome as I would like to know from other parents whose children had West Syndrome how they dealt with the issue of vaccinations. I am concerned about giving Charlie vaccinations due to his history of seizures. Speaking to the professionals they always give the advice that is required of them, namely that vaccinations should be given, but I would like to hear from other parents. I will post of photo of Charlie when I have worked out how to! Very Happy

Momof6 · Posted: March 31 2011, 7:25 AM Post subject:

Hi and welcome. So glad you will be joining us. I have no advice for you, but there are lots of parents here who do. Can't wait to see pictures and hear more about your family.

_________________
~Christine~
Mom of 6
Brandon ADD/ADHD 19, Chelsea 16, Connor 14, Logan 9, Cody 6 & Austin 4 ( DS & Hirschsprungs pull through 12/8/08 ) diagnosis 10/28/10 Colonic Neuropathy, 12/16/11 dx with seizure disorder, neurogentic bladder...Monti Cath 11/9/12
http://www.caringbridge.org/visit/austinpaquin

I think I can, I think I can.
Climb the highest hills in all the land.
(If you think you can, you can.)
He could and he did !

I say CHEESE !

earlyam · Posted: March 31 2011, 7:28 AM Post subject:

Hi and welcome!

_________________
Jo, Mum to Georgia 11/11/03 ( BIG High School Musical fan) and Ethan 16/12/07 (DS)

JanetG · Posted: March 31 2011, 8:04 AM Post subject:

Hello and welcome!! Looking forward to getting to know you and your family... Smile

_________________
Janet (47)
Joshua (angel) '85 (1 day old)
Sarah-age 25
Jaret-age 8
Jacey-born 2/22/08 (dx w/ Ds 9/10/07)

LinMac · Posted: March 31 2011, 8:10 AM Post subject:

A big welcome to downsyn! Can't wait to see some pictures of Charlie!

I hope one of our members Amy sees your post. She has tons of experience of IS and would be able to answer your questions.

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 9 - DS)

First Communion Day

dect · Posted: March 31 2011, 10:53 AM Post subject:

Hello and welcome to Downsyn!

http://www.downsyn.com/phpbb2/viewtopic.php?t=16676 should tell you how to post a photo Very Happy

_________________
Deryck
Dad to Xena 2 Aug 97, Lucas 28 Jun 99, Persephone 12 Jan 2004 (DS & AVSD repaired, artificial mitral valve)

Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind - Theodore Geisel (Dr Seuss)

http://www.picklesnet.co.uk

TheBradyBunch · Posted: March 31 2011, 12:04 PM Post subject:

Hello and welcome. You can ask to have the vaccine schedule spread out so that they only receive one vaccine at a time. It's what I do for ALL of my children.

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

AliMama · Posted: March 31 2011, 9:10 PM Post subject:

Welcome! It's great to have you here. Can't wait to "meet" your little guy! Smile

_________________
Maresa,
Mom to Alisa (10-29-2008) DS, complete AV canal repair on 3-6-2009

CharliesMum · Posted: April 01 2011, 1:16 PM Post subject:

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_________________
Mum to Charlie (DS) 25 months & Alice 12 years

CharliesMum · Posted: April 01 2011, 1:23 PM Post subject: Photo of Charlie

Hi there,

managed to upload a photo of Charlie with the help you sent through (thanks) couldn't manage to get it smaller though! Thanks to everyone who had replied to me, it is lovely to hear from you all Very Happy

_________________
Mum to Charlie (DS) 25 months & Alice 12 years

LinMac · Posted: April 01 2011, 1:28 PM Post subject:

Nice to meet you Charlie...you're a handsome young boy!

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 9 - DS)

First Communion Day