DownSyn Forum

MamaBugs · Posted: July 08 2012, 8:01 PM Post subject: New Here, Hello!

Hello everyone! My name is Denise & my son Steven has DS. He will be 4yrs old in August. He was recently dx'd with AAI, a Dynamic MRI has been scheduled for July 20th. I'm hoping to connect with some btdt parents that can help guide me in this journey. I'm also hoping to meet alot of great people along the way! Thanks for adding me to the group.

Tigger · Posted: July 08 2012, 8:42 PM Post subject:

Hi and welcome to Downsyn. My little one with DS is nearly 7....I don't know where the years have gone. There are a few families here who have dealt with AAI and I am sure they will chime in. Very Happy

_________________
Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

AliMama · Posted: July 08 2012, 9:54 PM Post subject:

Welcome! It's great to have you here! My daughter Ali will be four at the end of October.

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

LinMac · Posted: July 09 2012, 5:04 AM Post subject:

Welcome Denise and Steven to downsyn! Its nice to meet you!
I'm Linda, mom to Robert who was 8 in April and had DS. We live in Ireland.

As Karyn said a few parent here have experniece of AAI.....I'm afraid I'm not one of them.

Please keep us posted on how the MRI goes on 20th July....and Good Luck!

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

First Communion Day

Annieo · Posted: July 09 2012, 7:35 AM Post subject:

Hi Denise! My name is Ann and I'm the mother of John who had spinal fusion surgery in December. His was not a classic case of AAI. His C1 and C2 are not properly formed. He was on precautions for years until last fall when his neck started to hurt and just got worse and worse. We did surgery not knowing if that would resolve the neck pain, but I'm happy to say he's doing great!

I think I recognize you from the fb medical group. What were your son's measurements again? I'll bug Leah (lespring) to come and comment, too. Her son had AAI with spinal cord involvement. He had surgery a little over a year ago.

_________________

Ann, married to Tim, mom to Sally, Mark, Jane, John (12/02, DS), Paul, and Alice
www.caringbridge.org/visit/johnbremer

lespring · Posted: July 09 2012, 7:38 AM Post subject:

Hi there, and welcome!

My son Axel had AAI and spinal fusion done in May 2011 when he was 10 years old. At the time of surgery he had active impingement on his final cord. He didn't have a single symptom, but you should see his MRI! http://gardenofeagan.blogspot.com/2011/02/mri-pictures.html

Then, just a couple days before surgery he started stumbling. Scared the crap out of us, that's for sure!

Where are you located and what hospital are you using? Although we live in Minnesota, Axel (and several other kids I know) had his surgery done at Shriner's in Philadelphia. They have an AAI clinic and have done a couple different studies in the last year. (Axel was involved in them, but I don't remember what the nature of the studies were. LOL)

Axel had his halo on for 3 1/2 months, but most kids age don't need a halo. Part of the reason he had one is he came out of an institution and still had a lot of institutional behavior - like head banging in his sleep - that warranted the halo. While it wasn't fun to deal with, it gave us peace of mind that he wasn't going to damage the work that was just done. Like I said, most kids having fusion done at that age can get by with just a neck brace.

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 27, Noah 26, Tyler 24, Bryon 24, Angela 17 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 8 (DS adopted from Serbia 12/2011, AAI non-fusion), Abel (DS adopted from Serbia 4/2013)

Kimmy · Posted: July 09 2012, 8:13 AM Post subject:

Hi Denise,

Really pleased you found us at last - these guys will soon sort you out. Laughing

Kimmy

_________________
Kimmy
Mum of Nicole 08/98, Teah 08/00(DS, ASD), Etienne 03/02 and Pierre 09/04.

MamaBugs · Posted: July 09 2012, 1:02 PM Post subject:

Thanks Ladies! Steven's measurements are 6mm when his head is straight & 12mm when he hyperextends his neck. I am on the fb medical group too. Thanks to Axel's mom for the bloglink, I started skimming through it yesterday. Steven receives all of his care through the Cincinnati Childrens Hospital in Ohio. He is being seen by the head of Ortho, Dr. Crawford & the head of Nuerology will be involved when the mri results are in & he will be followed by both departments. He is not showing any symptoms that I am aware of. He's working on potty training & he has obstructive sleep apnea. I was told by our ENT that the symptomatic apnea is central apnea. I haven't googled anything yet. I find that its always best to reach out to the btdt parents. This journey started for us at my own doing! He had to have surgery on his airway for laryngeal malasia & I had learned that he would need to have his neck checked prior to sports so I figured no time like the present, ugh! I never imagined that this would be a medical issue for him. So I'm glad to have caught it but at the same time nervous about the future. Thanks again ladies!

lespring · Posted: July 09 2012, 1:30 PM Post subject:

Yes, I know that feeling well. When I gained custody of Axel in Serbia, we were sitting in a silent hotel room while he did his Stevie Wonder-head stimming thing. I was *almost* certain the almost imperceptible "click...click..click" sound his neck made on each rotation was my imagination. I knew he would need major dental work when we got home, requiring him to be put under general anesthesia, so I asked the international adoption clinic to schedule the X-rays for me. That day the nurse called. Axel was the first kid with DS who'd ever come through that clinic. She said, "You probably know what this means better than I do. The report says 'positive for AAI with active impingement."

I wanted to vomit.

I caught my breath, "Does it have a measurement?"

She told me it was at 6mm on extension. On an X-ray, the measurement given is the MINIMUM, the MRI often shows a different - larger - measurement.

All I could think of was the week we brought him home and took him sliding down an icy hill, and all the times he went head first into snowbanks, laughing hysterically. My God we could have killed him!

Again, even with active impingement on his spinal cord Axel didn't have a single symptom. The problem with AAI, once there is a symptom it's too late...that is damage already done to the spinal cord.

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 27, Noah 26, Tyler 24, Bryon 24, Angela 17 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 8 (DS adopted from Serbia 12/2011, AAI non-fusion), Abel (DS adopted from Serbia 4/2013)

beckysmum · Posted: July 09 2012, 1:57 PM Post subject:

hello and welcome Very Happy

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Claire & Chris , Mum and Dad to Bethany 05/03/1998 Calum 03/09/2004 Rebekah DS 13/01/2011

Catty · Posted: July 11 2012, 7:07 AM Post subject:

Welcome:)

Katrina · Posted: July 21 2012, 9:56 AM Post subject:

Welcome

Katrina and Peyton

_________________

Peyton and Paige

maziebaby · Posted: July 22 2012, 8:10 PM Post subject:

Hello and welcome I'm Lisa mom to Mazie who was 9 in May, I haven't had to deal with AAI, but your in the right place this forum offers a wealth of information and support ! good luck on the 20th and keep us posted Laughing

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Lisa Wife to Glenn Mom to Johnathan 24 Allison 21 Chad 15 Greta 14 Sarah 12 Jennifer 9 and Mazie 6 (DS/ vsd repair 8/03)