Reply Hey Mom! Learn more about the Gerber Life Insurance Grow-Up Plan!
 
Thread Tools Display Modes
Old 02-27-2013, 09:45 PM   #11
Leanbh
Registered Users
seller
seller
 
Join Date: Sep 2009
Location: Chi-town burbs
Posts: 6,201
My Mood:
Re: HELP dd may be headed for a feeding tube:(

I wonder what age they start doing therapy for food/eating etc with textures? Is it over 1? as the first year is not as "solid" dependent.

Advertisement

__________________
Mama of 4!
and precious little one 11/10/11
Leanbh is offline   Reply With Quote
Old 02-27-2013, 09:49 PM   #12
luvsviola's Avatar
luvsviola
Registered Users
seller
seller
 
Join Date: Dec 2006
Location: Central Indiana
Posts: 17,103
My Mood:
Re: HELP dd may be headed for a feeding tube:(

DS started feeding therapy at 3 months.

Mama...you CAN do it. I was TERRIFIED. BEYOND TERRIFIED. The first couple of times we had to change the NG out at home, I made DH do it. With the NG, they make you insert it 3 times, and DH insert it 3 times before you can be discharged, to prove that you can do it yourself.

But really, feeding tubes are VERY easy. The nurses will teach you. DS's drug addicted parents figured it out. I promise you will be a pro in no time. It's common sense--prime the tube, attach the tube to the port, dump in the formula. Watch it go down. Pour a little water in after it to rinse. Disconnect the tube. Done. By mid elementary school, most kids do their own tube feedings. DS is 3.5 and can hook himself up. He can't run his pump, but he can attach it himself.
__________________
Kristen
Middle school teacher by day, super mom by night
Mommy to The Boss~2007, The Energizer Bunny~2009, and The Princess~2011
My kids are no longer in diapers, but somehow, my computer keeps finding its way back here...

Last edited by luvsviola; 02-27-2013 at 09:52 PM.
luvsviola is offline   Reply With Quote
Old 02-27-2013, 09:53 PM   #13
shortcake2386's Avatar
shortcake2386
Registered Users
seller
 
Join Date: Jul 2006
Location: Georgia
Posts: 26,069
My Mood:
Re: HELP dd may be headed for a feeding tube:(

Quote:
Originally Posted by Leanbh View Post
What's her overall percentile for weight?
she is "under 3%" they dont number it under that.
Quote:
Originally Posted by Leanbh View Post
I wonder what age they start doing therapy for food/eating etc with textures? Is it over 1? as the first year is not as "solid" dependent.
im not sure.....we were told at 3 months to "just start her on solids bc she cant suck" but we waited until 7 months when she was grabbing our food and thats when we discovered the gluten/milk issues. i need to put my foot down and demand feeding therapy. i just do
__________________
JoAnna,wife to my first love Michael and SAHM to Mackenzie Grace(7 years), Makaela Lynn(5years),^^Meaghan Elise^^ born sleeping July 18, 2009. and Malakai Vincent(3 years) and Mackenna Kate(1year)and one DOG
NEW trainer testers MotherGoose Designs ETSY store "Green co-ops" shoeszoos, diapers,squeeze pops
shortcake2386 is offline   Reply With Quote
Old 02-27-2013, 10:06 PM   #14
shortcake2386's Avatar
shortcake2386
Registered Users
seller
 
Join Date: Jul 2006
Location: Georgia
Posts: 26,069
My Mood:
Re: HELP dd may be headed for a feeding tube:(

Quote:
Originally Posted by luvsviola View Post
DS started feeding therapy at 3 months.

Mama...you CAN do it. I was TERRIFIED. BEYOND TERRIFIED. The first couple of times we had to change the NG out at home, I made DH do it. With the NG, they make you insert it 3 times, and DH insert it 3 times before you can be discharged, to prove that you can do it yourself.

But really, feeding tubes are VERY easy. The nurses will teach you. DS's drug addicted parents figured it out. I promise you will be a pro in no time. It's common sense--prime the tube, attach the tube to the port, dump in the formula. Watch it go down. Pour a little water in after it to rinse. Disconnect the tube. Done. By mid elementary school, most kids do their own tube feedings. DS is 3.5 and can hook himself up. He can't run his pump, but he can attach it himself.
sooo scared. ok since you've btdt..... is there a point when i worry about dehydration? every time i say "ill take her tomorrow if she wont eat." she eats fine the next day
__________________
JoAnna,wife to my first love Michael and SAHM to Mackenzie Grace(7 years), Makaela Lynn(5years),^^Meaghan Elise^^ born sleeping July 18, 2009. and Malakai Vincent(3 years) and Mackenna Kate(1year)and one DOG
NEW trainer testers MotherGoose Designs ETSY store "Green co-ops" shoeszoos, diapers,squeeze pops
shortcake2386 is offline   Reply With Quote
Old 02-27-2013, 10:19 PM   #15
luvsviola's Avatar
luvsviola
Registered Users
seller
seller
 
Join Date: Dec 2006
Location: Central Indiana
Posts: 17,103
My Mood:
Re: HELP dd may be headed for a feeding tube:(

My son was 4 months old, and 10 pounds, and we had to take him to the ER if he took less than 20 ounces in a day. The wait to see a doc is months in their offices, but if you go to the ER, you see a developmental ped resident in about 15 minutes. Our ped called ahead when he was 4 months, and we took him, and got an NG. We kept that til he was 7 months. Then he got a G. At 18 months, we got a G-J, which was awesome because it meant since we fed the intestines (J), he couldn't vomit his formula up. We are going back to a G soon because he is drinking enough formula we don't need the tube. But, Peptamin Jr, his hypoallergenic formula, is about $4000 a month through the medical supply company. We can't afford that, and as long as he has a tube, it is covered by insurance.

We have done every test there is to do at 2 different children's hospitals. They can't explain why DS has such bad reflux. They can't explain why he won't eat. Every biopsy, scope, swallow study, upper GI, endoscopy, bloodwork, allergy test, you name it...all comes back fine. But, he's going to be 4 in April, goes to developmental preschool for emotional issues (is now physically and speech on target) but won't eat more than a couple bites. A great meal is 20 bites. We aim for 100-200 calories a meal.

If you go through the ER, don't go to your local. Go to your nearest teaching children's hospital. They will know a ton more. We went to our local ER one time, and they had no idea what to do with DS. We always go straight to the children's hospital. You will leave there with followup appointments that would have taken you months to get otherwise.

Also, as soon as kiddo has a tube, formula is required by law to be covered by insurance. So if you end up fortifying breast milk, it will be covered.

Also....have you called your local Early Intervention and done a referral? I would call them ASAP if you haven't already and get an evaluation for speech and OT done.
__________________
Kristen
Middle school teacher by day, super mom by night
Mommy to The Boss~2007, The Energizer Bunny~2009, and The Princess~2011
My kids are no longer in diapers, but somehow, my computer keeps finding its way back here...

Last edited by luvsviola; 02-27-2013 at 10:29 PM.
luvsviola is offline   Reply With Quote
Old 02-27-2013, 10:20 PM   #16
Leanbh
Registered Users
seller
seller
 
Join Date: Sep 2009
Location: Chi-town burbs
Posts: 6,201
My Mood:
Re: HELP dd may be headed for a feeding tube:(

Quote:
Originally Posted by shortcake2386 View Post
she is "under 3%" they dont number it under that.

Yes...I think they get concerned under the 5% even though tons of kids(mine) are still perfectly healthy at that point...that is just their weight. If she has fallen off the curve it's when they worry......

im not sure.....we were told at 3 months to "just start her on solids bc she cant suck" but we waited until 7 months when she was grabbing our food and thats when we discovered the gluten/milk issues. i need to put my foot down and demand feeding therapy. i just do
I would def push for feeding therapy esp if pp said they start earlier. I thought so as I remember our speech therapist for DS3 giving me some cues with how to feed my LO(he didn't need therapy....she was just giving me a tip to feed them that young as he wasn't interested....I just took a break and and came back to it though). Sounds like she is going to need it one way or another due to the sucking issues you mentioned.....so I'm personally rather start sooner than later.
__________________
Mama of 4!
and precious little one 11/10/11
Leanbh is offline   Reply With Quote
Old 02-27-2013, 11:02 PM   #17
shortcake2386's Avatar
shortcake2386
Registered Users
seller
 
Join Date: Jul 2006
Location: Georgia
Posts: 26,069
My Mood:
Re: HELP dd may be headed for a feeding tube:(

Quote:
Originally Posted by luvsviola View Post
My son was 4 months old, and 10 pounds, and we had to take him to the ER if he took less than 20 ounces in a day. The wait to see a doc is months in their offices, but if you go to the ER, you see a developmental ped resident in about 15 minutes. Our ped called ahead when he was 4 months, and we took him, and got an NG. We kept that til he was 7 months. Then he got a G. At 18 months, we got a G-J, which was awesome because it meant since we fed the intestines (J), he couldn't vomit his formula up. We are going back to a G soon because he is drinking enough formula we don't need the tube. But, Peptamin Jr, his hypoallergenic formula, is about $4000 a month through the medical supply company. We can't afford that, and as long as he has a tube, it is covered by insurance.

We have done every test there is to do at 2 different children's hospitals. They can't explain why DS has such bad reflux. They can't explain why he won't eat. Every biopsy, scope, swallow study, upper GI, endoscopy, bloodwork, allergy test, you name it...all comes back fine. But, he's going to be 4 in April, goes to developmental preschool for emotional issues (is now physically and speech on target) but won't eat more than a couple bites. A great meal is 20 bites. We aim for 100-200 calories a meal.

If you go through the ER, don't go to your local. Go to your nearest teaching children's hospital. They will know a ton more. We went to our local ER one time, and they had no idea what to do with DS. We always go straight to the children's hospital. You will leave there with followup appointments that would have taken you months to get otherwise.

Also, as soon as kiddo has a tube, formula is required by law to be covered by insurance. So if you end up fortifying breast milk, it will be covered.

Also....have you called your local Early Intervention and done a referral? I would call them ASAP if you haven't already and get an evaluation for speech and OT done.
she get OT through EI . they said she didnt need speech for not sucking, just to start her on solids
__________________
JoAnna,wife to my first love Michael and SAHM to Mackenzie Grace(7 years), Makaela Lynn(5years),^^Meaghan Elise^^ born sleeping July 18, 2009. and Malakai Vincent(3 years) and Mackenna Kate(1year)and one DOG
NEW trainer testers MotherGoose Designs ETSY store "Green co-ops" shoeszoos, diapers,squeeze pops
shortcake2386 is offline   Reply With Quote
Old 02-28-2013, 06:35 PM   #18
luvsviola's Avatar
luvsviola
Registered Users
seller
seller
 
Join Date: Dec 2006
Location: Central Indiana
Posts: 17,103
My Mood:
Re: HELP dd may be headed for a feeding tube:(

Quote:
Originally Posted by shortcake2386 View Post
she get OT through EI . they said she didnt need speech for not sucking, just to start her on solids
That's total BS. DS's feeding therapist is an SLP. You most certainly need speech for not sucking! SLPs and OTs do feeding therapy. I would talk to your ped and ask for a referral for a private speech evaluation. We see our therapist at our local hospital rehab center. They have them to help stroke victims as well as kids. Once a month, DS sees the feeding therapist at the children's hospital too. For awhile, they had a feeding group therapy group with 2 other little boys his age, and it was awesome, but the girl who ran it moved to Idaho to start homesteading. We were bummed.
__________________
Kristen
Middle school teacher by day, super mom by night
Mommy to The Boss~2007, The Energizer Bunny~2009, and The Princess~2011
My kids are no longer in diapers, but somehow, my computer keeps finding its way back here...

Last edited by luvsviola; 02-28-2013 at 06:36 PM.
luvsviola is offline   Reply With Quote
Old 02-28-2013, 07:33 PM   #19
Kätzchen's Avatar
Kätzchen
Registered Users
seller
 
Join Date: Mar 2011
Posts: 1,554
Quote:
Originally Posted by luvsviola

That's total BS. DS's feeding therapist is an SLP. You most certainly need speech for not sucking! SLPs and OTs do feeding therapy. I would talk to your ped and ask for a referral for a private speech evaluation. We see our therapist at our local hospital rehab center. They have them to help stroke victims as well as kids. Once a month, DS sees the feeding therapist at the children's hospital too. For awhile, they had a feeding group therapy group with 2 other little boys his age, and it was awesome, but the girl who ran it moved to Idaho to start homesteading. We were bummed.
Yup. Totally agree with the first part.
My daughter couldn't suck, we did both for years and very narrowly escaped a g-tube.

What kind of bottle are you using? I was never able to use a bottle other than a haberman feeder. I would also recommend not splitting the breastmilk up for fat content. I fed my daughter only breastmilk due to severe feeding issues for 3.5years with no issues.

Edit to add: my very active and healthy 19mo is only 19lbs.
__________________

Last edited by Kätzchen; 02-28-2013 at 07:40 PM.
Kätzchen is offline   Reply With Quote
Old 02-28-2013, 07:53 PM   #20
ktmelody
No Longer Here
 
Join Date: Jan 2007
Posts: 20,304
My Mood:
Quote:
Originally Posted by Kätzchen

Yup. Totally agree with the first part.
My daughter couldn't suck, we did both for years and very narrowly escaped a g-tube.

What kind of bottle are you using? I was never able to use a bottle other than a haberman feeder. I would also recommend not splitting the breastmilk up for fat content. I fed my daughter only breastmilk due to severe feeding issues for 3.5years with no issues.

Edit to add: my very active and healthy 19mo is only 19lbs.
Yup, the Haberman nipple saved us for months while I was pumping for dd who couldn't nurse. She finally weaned to breast only at 8 months. She has swallowing difficulties and is starting feeding therapy with an slp this month.

Def. ask for an slp...to do an evaluation.
ktmelody is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

Copyright © 2005 - 2014 Escalate Media. All Rights Reserved.