I just wondered if any of you have a child with Down's Syndrome? I know GERD is a common problem in Down's babies.

No, but I just wanted to say that your baby is beautiful! I have done alot of work with Down's kids. They hold a special place in my heart!

No, but we are waiting for a final diagnosis for Sam. He really fits the profile for cornelia de lang syndrome. We meet with the "expert" soon I hope--need to get all records transfered first.

Thank you so much! He is the love of my life. My husband and I have worked with people with developmental disabilities for years and that is how we met. Neither of us knew why we were so drawn to working with these special people, aside from the obvious rewarding nature of that type of work. We now know that, although we didn't know it then, we were just getting prepared for for our precious son. He is such a blessing, and we feel so fortunate that we were chosen to have this beautiful sweet boy. We think his extra chromasome makes him extra wonderful. Thank you for letting me brag about him. I'm just so proud of him :-)

I used to work with a teenaged girl with Cornelia De Lange Syndrome when I lived in Conn. She was very sweet and quite a character! I wish you and your family the best it will be good to have some answers so that you can get your son everything he needs and is entitled to. If you ever want to talk e-mail me.

Asher is a doll! He's one lucky little boy to have two dedicated parents!

Oooo, he is so sweet! Looking forward to getting to know you. ;)

Asher is adorable! In answer to your original question, there is a new member who joined either yesterday or today who has a Down's baby and I mentioned you to her. If you click on the newest members at the bottom of the main screen, you'll pull up their profiles, along with their sig. lines. It was in her sig. line that I noticed she has a Down's baby too.

He is a cutiepie. One lucky boy to have such great parents. Looking forward to getting to know you and little Asher better

Okay, I had a quick moment to search for you, and it's Jax's Mom who has a Down's baby.

Thanks Janette..I noticed Jaxs Mom and said hello. I'm sure we'll have a chance to talk.

No problem, Amy! I hope you're able to connect! I know how important it is to be able to talk with someone who has similar issues with their special needs child.

Just want to give you a heads up... IRD will likely be creating a new forum for special needs children who have reflux regardless of whether they have a diagnosis or not. We feel this will provide an outlet for parents of special needs children and hope that it will bring more people with similar situations.

Watch for it in the next few days.:-D

What a great idea---Thank you!!!!!!

Thanks Leigh! That will be great!

Experiencing some technical difficulty, but it IS coming.:-D Your response shows me that it is a good idea. Thanks!

Hopefully once we connect later today, Leigh.

Hi Amy

Sorry I didn't see this post earlier... My son Jaxon has Down Syndrome... He was our first child also.. Jaxon was born prematurly and spent 3 weeks in the NICU, for feeding a growing only.. Feeding was our biggest challenge right from day 1.. He was diagnosed with reflux at 7 weeks. We battled reflux with him until 1.5 years old when they finally did his fundo and thats when we thought everything would be smooth sailing... We didn't know he was aspirating into his lungs from a swallowing problem he also has... So we then had another feeding study done on he and we were told he was aspirating on both thin and thick liquids and wasn't safe to eat/drink anything that wasn't pudding consistancy... Thats went we got the G - tube.. He has had the G tube since Dec 23, 2005 before that he was NG tube feed which we found really hard due to his age and amount of movement...

I would love to chat more about our little guys..

PS - Asher is such a cutie...

This thread has just been moved to our new "Other Conditions and Syndromes" forum. Welcome and I hope that this will be a nice place for you to hang out in.

Thanks, Roni for setting it up.:-D


**sets out a pot of tea and some biscuits**

Hi Dana and Kyle
I wrote a pretty detailed story about Asher in the introduction section I think it's entitled "Hi Everyone". How is Jaxon doing with the G Tube? We had Asher on NG tube feeds for a couple months prior to and a week or so after his heart surgery. We are now having major feeding issues as he has developed a bottle aversion. It takes sometimes two hours to feed him and it's like a wrestling match. The only time he eats without fighting is when he sleeps.We are trying to gt his reflux controlled before he completely stops eating and we have to go back to tube feeds. If we do, I know the G tube will be inevitable.
How is Jaxon doing developmentally? Do you have early intervention services available for him in Canada? I'm not sure how the system works where you are. Asher gets Speech/Feeding therapy weekly, a special educator monthly to track his development, and he will be starting physical therapy this week. He is right on track with his development as of right now...he has caught up quite a bit since his heart surgery. How is your son's heart? Any congenital defects?

Hi Amy

Jaxon is doing very well now... He was delayed alot in the sitting, crawling etc. but once we got his reflux under control he caught up quick... He had the fundo and that helped out alot...

Jaxon has had early intervention since birth, we also have a physiotherapist, Feeding therapist, and speech.. It is going very well.. He is right on track for his age...

Jaxon didn't have any heart issues at all, we were very lucky... He just had major GI issues. He has feeding issues now due to the continual aspiration, so he will not take anything by mouth at all..

Is Asher going back onto the NG tube? Well you guys be having the fundo do with the G tube if he has to get it?

The G tube is working out so well with Jaxon except last week it came out of the stomach interally a bit and was causing him alot of pain so he had to go back to the OR to have it fixed... It leaks alot now but hopefully that will resolve soon... Other than that the tube is great...

Hope to chat more with you later...

Hello ladies..
So nice to see you (sorry I've been having a "vacation" from the board and missed welcoming you both). Great that you found this site!! Asher is such a CUTIPIE!!! Absolutely adorable!! Pleased that you guys both have early intervention.
Dana, my boys were born at 34 weks too and spent 3 weeks in NICU (growing & feeding only). Not so you would notice now.. thye are doing really well.
ANyway, just wanted to say HI! and welcome!!

Hi I am a mom to the sweetest baby in the world. Chris is 7 weeks and he is beautiful. We are fighting hard to get him going and he is a champ.
I am new to all of this and learning fast and hard. Any help or suggestions would be appreciated!
Thanks!

There are a few with down's on here...I believe, One I know of for sure *Asher's Mom*

Hopefully they will see this and chime in with some helpful advice and suggestions!

Thanks Stacey! I appreciate your response. It helps to hear a voice in the wilderness! LOL!

I am sitting here at almost 2am. I have been operating on very little sleep and my tiny one is having breathing problems. He was born 6 weeks early and was so tiny. He has only been home for two weeks.

He has scoliosis and reflux in addition to Downs and heart problems. His spine is curved almost into a half circle. His tummy is to one side. I try to keep him sraight by bracing him becauce in the natural curve position he does not get enough oxygen. His saturation runs around 80 to 85. When straighted and braced it is 95 and up.

We have our second appointment for early intervention tomorrow which I have to reschedule becasue all of his test results are not in.

I give him his meds 30 minutes before eating and feed him slowly....as slowly as he will allow becasue he eats like he is starved. Once he relaxes he falls asleep and then the struggle starts. He struggles for up to an hour and a half for air and the reflux kicks in. He arches and kicks and cries. All that will help is to hold him upright and talk to him, allowing him to almost stand in my hands and then draw back up to a fetal position.

I use bottles to reduce air, I burp him (but he often does not get any air up). I use a humidifier for warm mist, a nebulizer with saline solution for warm mist and apply vicks to my chest for him. I hold him in an upright position and never let him lay below 30 degrees in bed and chair. I swear he has asthma.

Whew...as I read that I see he has so much going on. Any suggestions?

Hi Leanna.. and welcome to the boards!! I'm glad you found us. It sounds like you're doing a wonderful job! It must be hard to keep Chris upright with his scoliosis. DO you have a baby montior? I would definitely recommend the angelcare sounds & movement monitor.. it does the sound but also has sensor pads so that it can monitor breathing as well....... it gave me total peace of mind in regards to the boys' breathing (they were born at 34 weeks). Having rambled on about that, you probably have an apnea montior anyway! :oops:
Is he on any meds for his reflux??
ANwyay, wanted to again welcome you to the boards! :hug:

Hi Sarah and thanks for the welcome and the gift! I have asked for a baby monitor and the doctors have not complied yet. I will have to find one on my own instead of waiting for a perscrption. No not an apnea montior either. I have a lot to say to my doctor. We spent the weekend in the emergency room and hospital becasue he couldnt breathe well.

His meds are zantax .04 three times a day and reglan .04 four times a day. He hates the taste.

I wish I could ease his pain and he could sleep better, poor baby.

I edited to say that it takes a lot of tricks to keep him upright! LOL! He learns fast tho and can out do me often~LOL

Hi Leanna,
My name is Amy and my son Asher is 8 months old has Down Syndrome, GERD, and a heart defect called AV Canal that was repaired via open heart surgery in November. It was a very scary and difficult time before,during and following his surgery but he is doing very well now cardiac-wise as well as developmentally. I wondered if your son Chris is recieving any early intervention services? He automatically qualifies for services such as Physical, Occupational, Speech/Feeding Therapy and Special Education just by diagnosis alone. In most states the therapists will come to your home. Also, if he has alot of medical issues he may qualify for a Medicaid Waiver which will pay for home nursing, medical supplies, and medical expenses that are not covered by insurance. In Asher's case, his reflux has been one of the most difficult things to deal with because there is no easy solution to treat it and it has been months of trial and error, feeding aversions and stress.
Will your son need surgery for his spine or will you be trying PT first? Do they feel it will improve as he gets older? I have to go to bed now...I'm getting a bit bleary eyed. If there is anything I can do to help or support you please let me know. My e-mail address is aimbee71@yahoo.com. I'll be thinking about your precious little boy and he will be in my prayers.

Hi Amy,
Thanks for your response. I am glad Asher is doing well after his surgery. I know its scary but I know you are a good mama because he looks so good! He is so handsome!

We have a nurse and everything possible covered. We are still working on much.

Chris just got approved for Early Intervention. We did not get started quickly becasue he was in the hospital the first four weeks of his life. Afterwards testing was delayed for some reason. The good news is that he was approved for the program last Tuesday.

As for the reflux I have found an unsteady balance. I have finally found the right consistancy of formula to help him. We are still having bouts but the pain is less frequent. As for his curved spine preventing adaquate oxygen saturation, the doctor perscribed a wedge for positioning but I cannot figure out where to buy them. He has pending appointments with various specialists. I hope the orthopedic doc helps and sheds some light on the situation. His back is so curved it causes other health problems.

Thank you for your prayers. I too will be praying for Asher and you.

Leanna,
I was thinking about you and sweet little Chris...how is he doing? Do you have any pictures of him? If so, I'd love to see him. My e-mail address is aimbee71@yahoo.com
Hugs,
Amy

Amy,
Sorry it has been so long since I posted. I have been working on all aspects of Chris' issues. He is much improved! We have began therapy and he can now raise his hands above his chest!!
We had a sleep study done and are waiting for results. We are battleing constiapation and we are now at daycare two hours a day for play therapy. Chris smiles and looks towards sound now. He is three months and two weeks.
I appreciate your kindness and I will be emailing you a picture soon!

Hi Leanna
I'm so happy to hear from you...I got your e-mail before I saw your post here.Thank you for the adorable pictures! I'm so glad Chris is doing well...I will keep you both in my prayers. Keep me updated on his progress whenever you get a chance.
Best Wishes,
Amy