Comments on: Feeding an infant http://einstein-syndrome.com Down Syndrome with a Positive Attitude Sun, 29 Aug 2010 12:29:57 +0000 hourly 1 http://wordpress.com/ By: Liora http://einstein-syndrome.com/health_medical/feeding_an_infant/#comment-1994 Liora Wed, 23 Jun 2010 10:45:43 +0000 http://einsteinsyndrome.wordpress.com/?page_id=74#comment-1994 Medela makes a Special Needs infant bottle. I bought one but never even used it, because our baby nursed pretty normally. A slightly low suck at first because she was getting oxygen and feeling kind of ill I guess, in the hospital. But perseverance and a day or two, and she came through just fine. She had only one bottle that whole time in the hospital (day 1 of life...stupid me consented) but then I started asserting myself. No more formula. I'll nurse her. No I won't pump it out so you see "how much", I'm not that great a pumper. But I knew her suck was good enough to get colostrum, and stimulate milk coming in and it was, for us, working fine. In other cases even if the baby is not strong but the mother wants to nurse, it can really be beneficial to pump pump pump and feed baby by adjustable special needs bottle for a couple of weeks or until the baby gets strong enough to nurse normally. The bottle is adjustable and you just go from easy to hard, then to nipple. You'll be glad you did!! Liora in Beijing Medela makes a Special Needs infant bottle. I bought one but never even used it, because our baby nursed pretty normally. A slightly low suck at first because she was getting oxygen and feeling kind of ill I guess, in the hospital. But perseverance and a day or two, and she came through just fine. She had only one bottle that whole time in the hospital (day 1 of life…stupid me consented) but then I started asserting myself. No more formula. I’ll nurse her. No I won’t pump it out so you see “how much”, I’m not that great a pumper. But I knew her suck was good enough to get colostrum, and stimulate milk coming in and it was, for us, working fine.

In other cases even if the baby is not strong but the mother wants to nurse, it can really be beneficial to pump pump pump and feed baby by adjustable special needs bottle for a couple of weeks or until the baby gets strong enough to nurse normally. The bottle is adjustable and you just go from easy to hard, then to nipple. You’ll be glad you did!! Liora in Beijing

]]> By: Paul Doney http://einstein-syndrome.com/health_medical/feeding_an_infant/#comment-1402 Paul Doney Mon, 08 Feb 2010 02:50:48 +0000 http://einsteinsyndrome.wordpress.com/?page_id=74#comment-1402 Our son did not have any cardiac issues but he was very difficult to feed from birth. We had to be very careful with volumes, speed, positioning and burping otherwise he would projectile vomit during the first days. After that we became experts at careful feeding. However, when he was 5 months old he stopped gaining weight and a barium meal revealed a duodenal stenosis (marked narrowing of the upper portion of the small intestine). This required immediate surgical correction. When the surgeon was in there he found 4 other things that required surgical correction so we were very happy that it was investigated. Has this possibility been ruled out? Paul Doney Our son did not have any cardiac issues but he was very difficult to feed from birth. We had to be very careful with volumes, speed, positioning and burping otherwise he would projectile vomit during the first days. After that we became experts at careful feeding. However, when he was 5 months old he stopped gaining weight and a barium meal revealed a duodenal stenosis (marked narrowing of the upper portion of the small intestine). This required immediate surgical correction. When the surgeon was in there he found 4 other things that required surgical correction so we were very happy that it was investigated.
Has this possibility been ruled out?
Paul Doney

]]> By: Ali Haefke http://einstein-syndrome.com/health_medical/feeding_an_infant/#comment-1396 Ali Haefke Sun, 07 Feb 2010 08:27:40 +0000 http://einsteinsyndrome.wordpress.com/?page_id=74#comment-1396 Hi. I know others will reply soon who have children with DS who have had heart surgery. I just wanted to post that when we were going through a particularly difficult time with our son with DS (he was still breastfeeding at the time) and he went through a period of refusing to breastfeed and also refused bottles and cups one thing that got us through until we could get it straightened out was an eyedropper. I know it doesn't sound like much... but it was better than no nourishment and somehow we were able to get some drops in here and there. I hope you have a good breast pump. If not, ask at the doctor's office or hospital for help or on the Einstein list. There's an herb called Fenugreek that may increase milk supply. Here's a link with info. on that and other galactagogues (things that can increase milk supply). http://www.drjaygordon.com/development/bf/galact.asp Here's a link that has info. on fortifying formula if breastfeeding isn't possible - http://articles.mercola.com/sites/articles/archive/2000/10/22/infant-formula-part-one.aspx I am going to be praying for you and your son. For his health and eating and that he'd be able to have breastmilk and for God's protection and mercy upon you Grace and upon your son. Blessings, Ali xo Hi. I know others will reply soon who have children with DS who have had heart surgery. I just wanted to post that when we were going through a particularly difficult time with our son with DS (he was still breastfeeding at the time) and he went through a period of refusing to breastfeed and also refused bottles and cups one thing that got us through until we could get it straightened out was an eyedropper. I know it doesn’t sound like much… but it was better than no nourishment and somehow we were able to get some drops in here and there. I hope you have a good breast pump. If not, ask at the doctor’s office or hospital for help or on the Einstein list. There’s an herb called Fenugreek that may increase milk supply. Here’s a link with info. on that and other galactagogues (things that can increase milk supply). http://www.drjaygordon.com/development/bf/galact.asp Here’s a link that has info. on fortifying formula if breastfeeding isn’t possible – http://articles.mercola.com/sites/articles/archive/2000/10/22/infant-formula-part-one.aspx
I am going to be praying for you and your son. For his health and eating and that he’d be able to have breastmilk and for God’s protection and mercy upon you Grace and upon your son. Blessings, Ali xo

]]> By: Darla Haskell http://einstein-syndrome.com/health_medical/feeding_an_infant/#comment-1395 Darla Haskell Sun, 07 Feb 2010 05:25:32 +0000 http://einsteinsyndrome.wordpress.com/?page_id=74#comment-1395 Cardiac surgery can cause the thyroid to react due to stress. This could be the reason for no weight gain. Don't panic...he hasn't gained but you didn't say that he lost weight so that is good. Keep breast feeding and keep trying babyfoods. My son started with sweet potatoes, then pears, then meat...and he loved the meat. I added a bit of butter to it to add calories and just a tiny bit of salt because his electrolytes were so out of wack from the stress. He ate babyfood meat until he was 3 yrs old...and when he would get sick that would be all I could get him to try. I met other parents that heart babies were crazy for the meats...mostly its the textures and just need time to get used to it. They often vomit which I believe is al the meds they take so i am always careful to never give meds on an empty stomach and at a time when they will be sitting up for a good while. Pump like a crazy women...he needs that good nutrition...freeze it...he will recover given time. Heart surgery is a major deal...often recovery takes years...my son has had four and the last one took us a good two years to come to almost normal...and his thyroid never went back to normal after the long recovery and having to be medicated. Thyroid medicine taken over two months means that your thyroid reprograms itself...thyroid conditions are not uncommon in children with DS even without heart defects. Cardiac surgery can cause the thyroid to react due to stress. This could be the reason for no weight gain. Don’t panic…he hasn’t gained but you didn’t say that he lost weight so that is good. Keep breast feeding and keep trying babyfoods. My son started with sweet potatoes, then pears, then meat…and he loved the meat. I added a bit of butter to it to add calories and just a tiny bit of salt because his electrolytes were so out of wack from the stress. He ate babyfood meat until he was 3 yrs old…and when he would get sick that would be all I could get him to try. I met other parents that heart babies were crazy for the meats…mostly its the textures and just need time to get used to it. They often vomit which I believe is al the meds they take so i am always careful to never give meds on an empty stomach and at a time when they will be sitting up for a good while. Pump like a crazy women…he needs that good nutrition…freeze it…he will recover given time. Heart surgery is a major deal…often recovery takes years…my son has had four and the last one took us a good two years to come to almost normal…and his thyroid never went back to normal after the long recovery and having to be medicated. Thyroid medicine taken over two months means that your thyroid reprograms itself…thyroid conditions are not uncommon in children with DS even without heart defects.

]]> By: Grace Higgins http://einstein-syndrome.com/health_medical/feeding_an_infant/#comment-1393 Grace Higgins Sun, 07 Feb 2010 03:56:32 +0000 http://einsteinsyndrome.wordpress.com/?page_id=74#comment-1393 I have a 10 month old son with DS and he has been breast feeding since birth. Had cardiac repair of TOF at 5 months. Currently has not gained weight since that time, and just found out his TSH is high, plus he has all the sypmtoms. He refuses to take a bottle, sippy or other forms of cups and my milk supply is diminishing. We just got his reflux esophagistis under control but we are still having trouble getting him to eat solids and or wean to a bottle or cup. Any suggestions???? we are desparate and I feel so helpless not being able to provide for him... Help? I have a 10 month old son with DS and he has been breast feeding since birth. Had cardiac repair of TOF at 5 months. Currently has not gained weight since that time, and just found out his TSH is high, plus he has all the sypmtoms. He refuses to take a bottle, sippy or other forms of cups and my milk supply is diminishing. We just got his reflux esophagistis under control but we are still having trouble getting him to eat solids and or wean to a bottle or cup. Any suggestions???? we are desparate and I feel so helpless not being able to provide for him… Help?

]]> By: yousuf http://einstein-syndrome.com/health_medical/feeding_an_infant/#comment-1103 yousuf Wed, 26 Aug 2009 22:01:46 +0000 http://einsteinsyndrome.wordpress.com/?page_id=74#comment-1103 i have a kid with down syndrome he is 30day s old advice me if you have information about peptide (ABNF9 and ADNP), i will be very hapy if reply where i can find these peptide as a drug? and How i can use it to help my son? regards yousuf i have a kid with down syndrome he is 30day s old
advice me if you have information about peptide (ABNF9 and ADNP), i will be very hapy if reply
where i can find these peptide as a drug? and How i can use it to help my son?

regards
yousuf

]]> By: Charlene http://einstein-syndrome.com/health_medical/feeding_an_infant/#comment-466 Charlene Fri, 23 Jan 2009 01:55:44 +0000 http://einsteinsyndrome.wordpress.com/?page_id=74#comment-466 Hi, When our 6 month old son was first born the Speech Therapist at the hospital recommened using the orthodonic nipple which has a flat side to it. It works perfect for him due to the enlarged flat tongue he has associated with Downs Syndrome. He is doing great and deinking 4 to 5 ounces every 3 hours. Also there are facial exercises you can do that help with his facial muscles, your OT could show you. Hi,
When our 6 month old son was first born the Speech Therapist at the hospital recommened using the orthodonic nipple which has a flat side to it. It works perfect for him due to the enlarged flat tongue he has associated with Downs Syndrome. He is doing great and deinking 4 to 5 ounces every 3 hours. Also there are facial exercises you can do that help with his facial muscles, your OT could show you.

]]> By: Mary http://einstein-syndrome.com/health_medical/feeding_an_infant/#comment-281 Mary Sun, 28 Sep 2008 04:39:41 +0000 http://einsteinsyndrome.wordpress.com/?page_id=74#comment-281 Hi. My son faced both these issues: taking forever to eat as a very young baby; and later, using an NG tube before and after his heart surgery. Two tools proved invaluable: 1. the Haberman feeder, which is a bottle designed with a special nipple for children that, for whatever reason, don't have a strong suck. The Haberman makes feeding much easier and less frustrating for all involved, or at least it did in our case; and 2. a finger feeder. This was basically a very narrow tube, taped to my finger with about 1/4" extending beyond my finger. At the other end, the tube was attached to a vessel that held milk. This vessel had to be higher than the finger tip with the tube taped to it. I put my finger in my baby's mouth and he sucked. I praised him the whole time he sucked. This was done many times per day and night in order to get him to take by mouth the amount he needed to get off the NG tube. I can't remember who makes these products, but I'm sure a google search will turn up specific information. Hi.

My son faced both these issues: taking forever to eat as a very young baby; and later, using an NG tube before and after his heart surgery.

Two tools proved invaluable: 1. the Haberman feeder, which is a bottle designed with a special nipple for children that, for whatever reason, don’t have a strong suck. The Haberman makes feeding much easier and less frustrating for all involved, or at least it did in our case; and 2. a finger feeder. This was basically a very narrow tube, taped to my finger with about 1/4″ extending beyond my finger. At the other end, the tube was attached to a vessel that held milk. This vessel had to be higher than the finger tip with the tube taped to it. I put my finger in my baby’s mouth and he sucked. I praised him the whole time he sucked. This was done many times per day and night in order to get him to take by mouth the amount he needed to get off the NG tube.
I can’t remember who makes these products, but I’m sure a google search will turn up specific information.

]]> By: lynne http://einstein-syndrome.com/health_medical/feeding_an_infant/#comment-280 lynne Fri, 26 Sep 2008 23:07:25 +0000 http://einsteinsyndrome.wordpress.com/?page_id=74#comment-280 ANyone have any ideas as the best bottle (nipples ) for bottle feeding for a baby with downs She is 8 weeks old and just had a vsd and asd repaired last week. Still on NG tube feeding but want to change that as we hove been doing this since she was born Thanks ANyone have any ideas as the best bottle (nipples ) for bottle feeding for a baby with downs She is 8 weeks old and just had a vsd and asd repaired last week. Still on NG tube feeding but want to change that as we hove been doing this since she was born

Thanks

]]> By: Danielle http://einstein-syndrome.com/health_medical/feeding_an_infant/#comment-269 Danielle Fri, 19 Sep 2008 15:09:39 +0000 http://einsteinsyndrome.wordpress.com/?page_id=74#comment-269 It take me over 2 hours for my 2 month old daughter to drink 4 ounces, which I think is due to her not sucking properly. I mean she can suck, but so much air is getting in her mouth and she has so much gas. Is there a special bottle that is good for children with DS? I feel as if all day I am feeding her. Thanks! It take me over 2 hours for my 2 month old daughter to drink 4 ounces, which I think is due to her not sucking properly. I mean she can suck, but so much air is getting in her mouth and she has so much gas. Is there a special bottle that is good for children with DS? I feel as if all day I am feeding her.
Thanks!

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