Hi Everybody! I have a 2 month old girl with Down sydrome and she has difficult in taking the bottles. Most of the milk she is getting is from the ng tube through her nose. When I try the bottle on her, she sometimes would choke up or cough and vomit. She does not do well on the breast either. She is getting some occupational therapy for a couple of weeks now, but it's not working. Also, she has ASD heart defect which will required surgery around Sept.
Please let me know if you have any suggestions or you have been in my situation before. Thank you so much!!
Post by momofrussell on Jul 21, 2005 18:40:02 GMT -5
I just wanted to say Welcome to Unomas Many!!! I have to experience or knowledge with feedings like that, nor NG tubes and bottle feedings together... so hopefully some other wise ones here can help you!
Enjoy your new baby girl and please feel free to share all about her!
Adrienne, wife of Kevin, mom of Regan 19, Russell (DS, Autism, Visually Impaired) 14 and Reece 11.
YES!!!!!!!!!! I have had your problem! Nicholas was a poor eater, too. I was never really sure if it was from weak muscles because of the DS, or lack of energy from the heart defect. He has AV canal defect that was repaired.
He required the most PATIENCE to feed! It would take an HOUR to get in ONE OUNCE! Very slow to gain weight...talk about frustrating!
We experimented with different nipples, my husband said we looked like a nipple factory. The ones that worked best for him were some premie nipples that we got from the hospital. I can also tell you that the feeding gets SOOOOO much better after the surgery! So, although I'm sure you're dreading the surgery (I remember how that was) that is an additional benefit afterwards! Good luck!
Oh, yeah...I can also tell you that when he had his first surgery at 3 mos old, he still didn't even weigh 8 lbs, now he is 2, weighs 27 lbs, and feeds himself!!!!!!!!!!!!!!!!!!!!!!! LOTS better!
Thanks for your info Valerie! I love this site!! My daughter, Petra, can drink about 5 cc in like 15 min than she would choke up sometimes or gets tired easily. I think she might have gastointestinal problems, but it might just be low muscle tone and her heart. My husband and I are trying a lot of nipples too! Yes, we got the premie nipples also. Seems like she likes it just about 30% in her mouth...not all the way. Have you heard of the Haberman feeder nipple? The therapist recommends it, but I haven't ordered it from the net yet...
Nope, havn't heard of that one. But if you're getting 5 oz in 15 min, kudos to you!!! And it might be more GI, a lot of our kids have reflux problems. See what happens after surgery, she might do great! Or...maybe you need to see your ped or GI doc, she might need some med?? Nicholas was on Zantac for a short time.
Post by meghans_mom on Jul 22, 2005 5:35:14 GMT -5
I think several people have used Haberman feeders here. If you can look for Evan's Dads posts...but Evan is a bit older now. Maybe he'll post up, or you can put up a message directed to him. Have you gotten a speech therapy eval yet? if not, request one...even at your daughter's young age she can benefit from SLT, it's just sometimes hard to get. good luck! laurie
My son Collin who had ASD repair at 2.5 years (which was a piece of cake if I do say so my self -- there's a picture of Collin taken within 24 hours after having his surgery in the photo album -- You would never tell he just had major surgery), was a very messy eater at your daughters age up until he was probably 6 -8 months old. Collin weighed 9lbs at birth and it took me 8 weeks to get him back up to his birth weight because it took him so long to learn how to nurse but he made it!!!
Post by laurasnowbird on Jul 22, 2005 9:46:00 GMT -5
Hi Many! Welcome to Uno Mas! You've already gotten some great advice. I would definitely check out the reflux possibility. Ethan had some similar issues, and it was due to an intestinal blockage that went undetected for 8 months!
There is a Yahoo groups listserve that is specific to Down Syndrome and heart issues, and many of those folks have experience feeding kids who have heart issues. I don't know if you have experience with listserves (I didn't before Ethan was born) but you send e-mails to the whole group and get answers from members of the group. You have to subscribe to the group, but it is an easy process. Here's a link to the spot to sign up for the listserve:
Laura, mother to Nicholas (27), Victoria (15), Ethan DS (11 years) and Aidan (7 years)
"The true realist is the person who sees things both as they are, and as they can be. In every situation there is the possibility of improvement; in every life the hidden capacity for something better." Lester B. Pearson
Yosh came home with an ng tube. To get him drinking a bottle we thikened the formula with rice and gave it to him at the same time we did the tube so he would understand that the bottle would fill him up. If she's spitting up, I would definitely check for reflux. Also, we learned too late that ng tube feeding can lead to trouble with solids later on. I would look into oral motor therapy as soon as possible. Yosh is still mostly on the bottle.
The best advice I can give is to use the Haberman feeder! It is the only thing that worked with Sarah. We did the Beckman oral motor exercises and used the Haberman while supporting her jaw. I always tried feeding her orally before using the ng tube.
Sarah just did not have the strength to feed until after her heart surgery on her three month birthday. It was a long process but she was finally taking a bottle at 5 1/2 months. I was so happy to get rid of that darn ng tube.
Your OT may be able to get a Haberman feeder for you or you can get them from Medela. I'm not sure of their web address.
Good luck! I know how frustrating it can be when you baby can't or won't eat.
Mommy to Alyssa 5-18-90 and Sarah (Ds) 9-10-01 ~Wife to Sam ~ GG to Lillianna 6-7-11
Hi and welcome to UnoMas! Alison used a Haberman until she was about 3 months old. It was a God-send for us!!! She would only take about an ounce at a feeding using any of the regular nipples and was not gaining wait - actually was losing weight until we started with the Haberman when she was about 2 weeks old. She was still in the NICU after surgery for an imperforate anus and still had the NG-tube as well. Once she started using the Haberman she slowly started to gain weight. The Haberman doesn't require the baby to suck as hard to get the milk and so they are able to nurse longer and expend less energy to get the milk into them. The NG was left in place for about a week after she started using the Haberman and showed a slow but steady weight gain and we were finally able to bring her home with us!!!
Like Chris said, you should be able to get one thru your OT. If not, send me a personal message and I would be happy to send you the one we still have! They are rather pricey but well worth the investment!!!
Barb, mom to Alison (DS - 3/22/03) and her sisters Caitlin and Sarah "Children are likely to live up to what you believe of them." - Lady Bird Johnson
Welcome to UnoMas.. Boy have we been there with Evan. Evan was on an NG tube for the first year of his life. We tried everything, to be honest not much worked. The haberman feeders worked for a little while, but we did get the best results from these bottles. Here is what we learned, because of his heart surgery and prematuraty he did not have the sucking skill. While he was NG feeding we always had a binky in his mouth so he would correlate sucking with getting full.
Well finally it came to his one year birthday and we noticed something, when we tried the bottle he would fuss, but as soon as the feeding machine came out he was happy..Hmmmmmmmmmmmm at that age it was a behavorial issue, we were lucky we had a great doctor and was willing to work with us on a cold turkey method. On his 1st birthday we pulled the tube, it was hard for a couple of days and he lost some weight, but when he realized we were not going to give in he started eating and drinking from a sippy cup, we skipped the bottle. I guess since we had tried everything we could, we came to a point where we accepted the tube knowing that when he was ready he wouldn't need it.
I know it is hard, and please try everything to get rid of the tube, we didn't have as much luck making the switch early and had to go cold turkey. Like I said above I would start with the haberman because if we could have gotten Evan off the tube with anything that would have been it. If weight becomes a problem we used a supplement called "Enfamil Human Milk Fortifier" and it worked great. I know this isn't the best advice because it took us a year, but try everything in your power and keep working on it.
Be patient with OT, it takes more than a couple of weeks to get results. We never had problems with throwing up, sounds like maybe a little Reflux, but I am not sure.
Last Edit: Jul 23, 2005 13:38:22 GMT -5 by Evans Dad