Posted By Posting
Feb 21, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
lchang4
I saw you response on the other thread and didn't want it to get lost.

In order to tell if a child is aspirating is to do a swallow study. you can also do an XRay of the lungs and they can see if any aspirations have been happening.

HUGE HUGS about the NICU wanting to do a G and Fundo!!!! OMGosh you ahve NO idea how many stories like that I've heard. I can't believe how many hospitals still think a Fundo will FIX all GERD issues. For a child that NEEDS it the Fundo is a godsend but for a child that doesn't it can be awful.

Feb 22, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
Heck, even for the child like my son that NEEDED the fundo, it can end up awful unfortunately(he has damage from the procedure). Sorry you had to go through that(((hugs))There is no way to know if a child is aspirating without testing, you cant just guess, KWIM. First line testing, like Jessica said above, is the modified barium swallow study, although keep in mind it is only a moment in time, and just because a child has a normal swallow during the test, doesnt mean the child doesnt ever aspirate. I really think if she hasnt already, your child should have a swallow study to check her swallow, because what you describe does possibly sound like a swallow dysfunction .A bronchoscopy,probably the best test to tell if aspiration is happening, can also show aspiration damage in the lungs, although it is more invasive and cant always differentiate between swallow aspiration or reflux aspiration, sometimes the bronchioalveolar lavage will reveal pepsin in the lungs which shows gastric contents have been aspirated, implying reflux aspiration,lipid laden macrophages etc..

Feb 22, 2009
lchang4
Thanks
Thanks for your support. I'll discuss with the GI on the next appointment and see if he'll order more tests. If it turns out that she is aspirating, what do you think would happen next? Are they going to tell me not to feed her by mouth anymore?
Feb 22, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds

Well if she is aspirating on swallow, then they do thickened feeds, you will work with a speech therapist/feeding therapist to find the safest consistency for your child. If these precautions dont work, then tubefeeding and no oral feedsmay be required until the aspiration is resolved. If she is aspirating reflux, then it is a different treatment, medications etc..

Most of the time there are complications of aspiration, like most commonly aspiration pneumonia,breathing trouble,wheezing,repetative respiratory infections,etc

Does your daughter have breathing problems?

Feb 22, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Glad Jessica popped on to help.

Yep, if the thickening doesn't work a child may have to go NPO (nothing by mouth) for a bit to avoid the damage.

I hope the Dr will listen to you Good luck.

Feb 23, 2009
lchang4
She doesn't have any problems except diagnosis of high blood pressure and reflux. She's breathing fine except when she chokes on the 100% thickened milk. I've thinned it out to 70% using regular flow nipple, not Y-cut as before. So far so good. I don't really see any signs of reflux. To me, it's more of a swallowing problem. What confuses me is that other babies with swallowing problem get treated with milk thickener too. But I haven't heard of any baby choking with such thickened milk. Do they use Y-cut too?
Feb 23, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I can't answer as to thickening and the bottle as Jedd never really took a bottle, he was tube fed just about all of his cals. I can tell you that Jedd would gag and choke on his solids once he was taking them. For hi, he just had to "learn" how to do it since he had really never swallow liquid or foods really ever. He had to learn the pattern of taking it off of the spoon and getting it in his mouth and then swallowing the puree.

So to me it would make sense that a child if they were on thickened feeds would still possibly have problems. but then again, like I said, Jedd never used thickeners. We were on 27cal formula as an infant for weight issues and FTT and we went to a 30 cal formula at 11 months old for FTT.

Feb 23, 2009
lchang4
Wow! I've only heard of 27 calories never 30 calories.
Feb 23, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
We actually went to 45 cal per oz for FTT, but Brent couldnt tolerate it and are back to 30 cal per oz.
Check with your
doctor first!