Posted By Posting
Oct 04, 2008
jessicalynn
Brent 2 years old,
Birthweight 12 lbs 3.3 oz!
Very severe GERD,LPR,FTT
Severe esophagitis/scarring
Paraesophageal Hiatal Hernia,
Esophageal Dysmotility,
Food impaction,Aspiration
ALTE,Dysphagia,Odynophagia
Eosinophilic Esophagitis,Severe retching
Severe allergic colitis/malabsorption
Susp eosinophilic colitis,chronic diarrhea,
Laryngomalacia,Gas/Bloat Syndrome,
Visceral Hyperalgesia,GI Dysmotility,
Chronic infection(ear/sinus/lung)
Adenoid/tonsillar hypertrophy
Gait abnormality/bowlegs,widened growth plates
Susp Vagus Nerve Damage
Surgeries, Nissen fundo,hernia repair/
reconstruction,esophageal dilation,gtube,
ear tubes,adenoidectomy
Bronchs w/ BAL's,lung biopsy
Upcoming scope/colonoscopy
Manometry testing in Oct.
Meds: Nexium,Zantac,Baclofen, Neurontin,
Zofran,Pulmicort/Splenda,PrednisonePRN,
NPO tubefed continuous elecare 24 hours/day
BlueLeopard
I am so sorry to hear about the loss of your daughter years ago. ((hugs)) One thing that I want to say, is that although it's true that nasogastric tubes can definately cause aversion, it is not the same when the child has a gastrostomy, it usually doesnt cause aversion. Food Aversion also most frequently happens when a child learns that eating causes pain, kids are so smart, if every time the child eats, he ends up in pain or choking, the child is eventually going to refuse to eat, simple really. You are running the same risk just to due the disease itself. Tubefeeding doesnt cause nutritional deficiencies, the types of formulas used have all the calories and nutrients needed to grow wonderfully. I was terrified too, I totally know how you feel, but we had no other choice.The reason my son has lost weight, has deficiencies is due to his gastrointestinal dysmotility, we cannot give him enough formula he needs to flourish, it causes him severe pain, distension and retching,etc it is not because of his EE, he has other things wrong. He has to get little drips of formula through his tube 24 hours a day.If Eric is able to take in enough elemental formula to grow, he wont need a tube.The only time that tubefeeding is neccessary is when the child wont take enough formula to grow, and there is FTT.If a child has to go formula only, drinking it is what is done.If that doesnt work, then the tube.And keep in mind, 95% of the time elemental diet only does indeed put EE into remission, that is an extremely high success rate. I hope Eric never needs to be tubefed, but if he does, I just want you to know that I have met hundreds of parents of tubefeeding children. Not one of them has ever regretted getting a feeding tube EVER. So try to keep that in mind, even though I know the thought is very scary. I hope that things go well, God Bless:)
Oct 04, 2008
jedd'smommy
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'll just second what Jessica said. Jedd's fomrulas were all fully nutritional and he coudlhave lived off of them well into adulthood without any issues in regards to his health. Many adults who have had strokes do the same thing. Live off an enternal formula if they loose their abilibty to swallow due to their stroke.

Baby formulas can be used up until age 2 and after that they go to an toddler plus one formula. Jedd has even had a "juice" that he could drink or have tubed into him tha twas a "juice" but was also fully nutritinal in is vitamins and minerals. It looks and tastes like a juice but in all actuallity it is a formula.

Like Jesica said the issue is not being on a formula it is not taking ENOUGH of that formula to gain and sustain weight. Hence, the reason why lots of kiddos who have to take an elemental formula use tubes, it's not the best tasting stuff in the world.

Not for a single day have DH and I ever regretted getting Jedd's feeding tube. It has allowed him to grow and thrive and well, LIVE!!! LOL

Yes, tubes are and can be scary things at first. but after some adjustment time, thye become your "friend" Believe me, after almost 2 years of tube feeding, I don't want to pull Jedd's tube even though we haven't used it since June 26th. We will wait at least this Winter and then see if I am willing to pull it....LOL Even then I am not soo sure I will want it gone, it's a safety net that makes everyday easier just knowing I have it there.....

Oct 06, 2008
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Thanks guys. I completely understand what you are saying about the tube feeds. I just hope we don't have to go there for a couple reasons. One, is that my 35 yr.-old brother died 4 yrs. back because of a pic line infection. I know that is completely different, but I don't like artificial "openings" through the skin, if you KWIM. The other is that Eric is a very particular kid. His socks have to be on perfect, etc. I think it is a sensory condition or something I have seen mentioned here before. He would rip that sucker out in no time, trust me. The other thing, besides the feeding adversions, is where does this end? Does it cure e.e.? I know it can't. Does he keep a feeding tube for life? I'm praying he will continue drinking the enough of the crap (Neocate) & maybe work up to 50 foods or so, for now. I'm way ahead of myself, I know. I guess I'll have to adjust as we go along this very unexpected journey. But, I really do appreciate your perpspectives on the matter. El
Oct 06, 2008
jessicalynn
Brent 2 years old,
Birthweight 12 lbs 3.3 oz!
Very severe GERD,LPR,FTT
Severe esophagitis/scarring
Paraesophageal Hiatal Hernia,
Esophageal Dysmotility,
Food impaction,Aspiration
ALTE,Dysphagia,Odynophagia
Eosinophilic Esophagitis,Severe retching
Severe allergic colitis/malabsorption
Susp eosinophilic colitis,chronic diarrhea,
Laryngomalacia,Gas/Bloat Syndrome,
Visceral Hyperalgesia,GI Dysmotility,
Chronic infection(ear/sinus/lung)
Adenoid/tonsillar hypertrophy
Gait abnormality/bowlegs,widened growth plates
Susp Vagus Nerve Damage
Surgeries, Nissen fundo,hernia repair/
reconstruction,esophageal dilation,gtube,
ear tubes,adenoidectomy
Bronchs w/ BAL's,lung biopsy
Upcoming scope/colonoscopy
Manometry testing in Oct.
Meds: Nexium,Zantac,Baclofen, Neurontin,
Zofran,Pulmicort/Splenda,PrednisonePRN,
NPO tubefed continuous elecare 24 hours/day
I cant answer your questions on where it will end,I wish I knew myself, it is a tough and scary thing to think about, I know. Brent has been dx with Sensory Processing Disorder when he was around 1, and if it makes you feel any better, he has never tried to rip out his feeding tube. I hope things go well, and he will pass those 50 foods:) Hugs!
Oct 07, 2008
kmom
Worry Wart mom to
27 mo. reformed "happy spitter"
34.8lbs , 37in tall(oct)
Diagnosed A/R at 6 wks
Zantac until 1yr then Prevacid
Med free since February 08
peanut & egg allergies...still
Zoo Boo Trick-or-Treating (pic).
Hi Ellen, I must have missed something here. I haven't been on in a while. Is Eric OK? Are they going to put him on a liquid diet? I'll have to e-mail you tonight. I am sorry that there seems to be some more on your plate. I hope Eric gets some relief soon.
Oct 07, 2008
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
kmom - I'll look for your e-mail : ) Ellen
Check with your
doctor first!