Posted By Posting
Oct 13, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Re-G tube babies/thanks/long
Thank you everyone for sharing. G-tube and fundo have been mentioned to us numerous times. We are terrified and refused. Mostly because I have this gut wrenching feeling that the fundo especially won't help her.

That feeling may be right as it turns out because her stomach muscles are not coordinated with her muscles of the eosophagus. Her eosophagus pushes down while the stomach pushes up, among other contraindications for the surgery. That particular surgery could have been a night mare for her though it is a lifesaver for many.

Through all the thoughts and fear I have had, it is good to see that good things do come out of these surgeries. It is good to hear stories of success.

They told us at this point even if Megan did have a G-Tube, they have no idea what we could have fed her through it. She cannot even tolerate Elemental formulas because of the corn.

She eats regular table food and goes through cycles. Usually 1 in every 4 days she eats well. We have tried many elimination diets, but so far with not much success. We will keep trying because we know there is light at the end of this tunnel.

We r currently trying Ultracare for kids but seems the little bit of corn even in that is hurting her as she cut her eating again and is refusing the formula. Ultracare contains Xantham gum which has this warning " xanthan gum is produced by a bacterium that is fed corn to grow, some people allergic to corn will also react to it. Yellow Phrygian Husk is a common source of bacterium in which xanthan gum is created." The more Meggy eats, the more problems she has which makes me think that it is motility issues as much as anything else. Having so many food sensitivities and EGID to work with doesn't help, but I see light at the end of this tunnel and will work toward better days no matter what it takes.

We are heading back to John Hopkins unless something changes in about 4 weeks. They treat our Meggy like she is the little human baby she is. She is seen as an individual there not a number.

Oct 13, 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
If that is what you think, you should push for further testing of her motility.What motility tests has she had that make you think that it is motility, how did you know her esophagus pushes down, and stomach pushes up??Fundo should really only be considered in life threatening situations where the is severe damage to the esophagus despite meds,lung complications, it wont neccessarily fix FTT and feeding problems, or make the child eat more. Frequent Vomiters do not do well with the fundo, as they likely have underlying motility issues.A fundo is a nightmare for children with motility issues, look at my son, although he didnt seem to have motility issues before surgery, and had normal motility testing results. Now his esophagus has no motility at all and his GI tract has horrible motility. Although when he is NPO is respiratory system is much better.You have to outweigh the risk, you are trading some problems for possibly new problems when you get a fundo, it needs to be severe enough to be worth it,kwim? The question I am wondering, is how do you know if it is allergy/intolerance to corn that she is not tolerating elemental formula, or if it is mainly motility issues ?
Oct 13, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
Photobucket
Quinn has motility issues. I thought the fundo was going to do a lot of damage but I figured that it couldn't be any worse than what we were going through with her vomit and FTT. But we did the fundo anyway. It was a long recovery altogether, but it was definitely the best thing for her. She started to grow and get better. She does still require Reglan, which is her motility med, but I have noticed that her motility has gotten better as time goes on. A lot of moms told me that because Q has motility issues, the fundo would do no justice for her, but they were wrong. It helped her. It could be that she didn't have it that bad, but I have seen kids who do not have as bad motility as Quinn do worse than she did. Sometimes it gets bad again, like when she gets sick. i ca check it because I pull back on her residuals and sometimes, even when she is on continuous feeds and hours later, Iwill still pull out 500mLs. That's how you know she isn't moving it through. So I know she still has motility issues, but the fundo is holding nicely and has done wonders for her. -sarah
Oct 13, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Jasmine also has motility issues, my Dr was telling me very common with EGID babies. WE are on motilium which helps some. I am glad that you are getting good and supportive medical attention at JH.....hope you guys find something that helps.
Oct 13, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Long, longer,
Jessicalynn,

I am sorry that your little one has so many issues, and has to hurt. Thank you for sharing.

We have been pushed to have fundo for Megan since she was tiny. But when I did my research it never set well with me. I have had this feeling that there is more to this than reflux all along.

We were actually told we were bad parents when we said no to fundo/ g-tube.

We have requested motility testing and the only thing along those line that has been done is upper GI study when she was 3 months old. Otherwise we were told no, it wasn't necessary, that this is all reflux although she does 50% worse on reflux meds. (Until we sought out John Hopkins.) There are very few GI specialist here for new opinions. Just recently our pedi. had said he was admitting her to the hospital for an NG tube and then G-tube when the final decision was made. He never asked us or even said we would make the decision together. He just said that was the way it is and if we don't agree they would compel us and we wouldn't be allowed near our daughter. Meggy's GI has already said G-tube isn't the way to go at this point.

Of course I sought out 3 new opinions immediately and have a new pedi. who totally disagreed and will stand behind us if there is trouble.

When we did NG tube feeds (almost a year ago), continuous as well, our issue was same as Quinns. We could pull over 12 ounces residual at anytime. The more we fed her the more you would see her little tummy blow up like a balloon. The food wouldn't go anywhere for a long time. The more we fed her the sicker she became and would just vomit because it couldn't or wouldn't go down.

Now on the good days we have when she eats what is considered normal and what she needs to gain she vomits. Sometimes she eats something at 8 am and will vomit the same thing back up at 8PM or later undigested.

On days she eats heavy foods like lentils, chickpeas, or any other Legumes, even when not in excess, she vomits it back up in her sleep. It just kind of leaks out of her mouth onto the bed. She can have these things at 11:30 or 12 for lunch and still vomit it over night. Usually looks undigested and you can tell exactly what it is.

Also, we know that levsin helps quite a bit. Her tummy spasms are visible right below the tip of her sternum. Then you hear a loud gulping sound and then she screams and screams. We were told that this is not pyloric spasms though it seems similar.

When the tummy spasms are present and when she screams there are also visible spasms on the front of her neck (esophagus)The neck muscles seems to be rippling downward and the stomach looks like when Meggy was inside of me kicking. I don't know if any of this makes sense.

We found the corn sensitivity because Meggy never tolerated any infant formula, she was even worse on elemental formula. I am told this is very very rare. When I broke down the ingredients of everything she had tried, the corn, dairy, soy, and oils were the only similarities. Also, of all infant formulas she did best on Good Start which has the least corn.

Sometimes we feed her and miss something in the ingredients. Within hours she is screaming, flailing, arching, rolling around on the floor. When we go back and check the ingredients most of the time we have either missed something containing corn or gelatin.

Sarah,

Thank you for sharing. You are always so inspiring, along with the many other mommie's here . I am so happy Quinn did well with all her surgeries. I have read back through all of your post I think back to February before and I am amazed at everything u have been through. U r certainly inspiring and just reading back through it has given me so much hope seeing the improvement Quinn has made.

Jazz Mommie,

Thank you for sharing. I am always glad to hear from you as it seems our lo's have so many similarities. I am glad the Motilium is helping. I hope she continues to get better. It is good to have someone finally listen and actually see Meggy as a whole.

Oct 13, 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 completly agree with Jessica. I reall ycouldnt' agree more. I am haivn gPAGER issues today so I can't check the posts while I respond not sur eif that is happening for everyone else or not.

Did you say you are having esophageal motility issues??? If so that certainly woudl be a hard decision to amke. Wrapping the stomach coudlmake that worse. Then you would end oup completely tube fed.

I would get a referal to a hos-ptal that does motility testing prior to getting the surgery done. Jedd is a prime example. They wanted to do one on him when he was around 10 month old. I told them to give us a year. Here we are at 2 and I don't t hink ANY dr. woudl refer him to get one know. I would do anything anything to buy more time including going NPO and completely tube fed for a year prior to doing a Nissen. JMHO though.

Oct 13, 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
Basically then she has had no motility testing .First, she needs a repeat upper GI, then a gastric emptying scan, then manometry,the gold standard of motilty disorder diagnosis. You can't truly diagnose these things without the proper testing.It does sound like she has some motility issues though.MOST kids with bad motility disorders,either of the esophagus or the stomach do have complications after fundoplication,but not all, Quinn would be a lucky one, which is absolutely wonderful.That is why pediatric surgeons and GI drs need to rule out motility dosorders prior to fundoplication surgery, and it is not reccommended to be performed on children with motility disorders,swallowing issues,etc.Among these children is a very high rate of wrap failure and more complications. 2 out of 3 out of every 10 people who have the procedure have new issues that are almost as bad as GERD itself!! I am certainly not anti-fundo at all. When there is no other choice left and everything has been tried, it has to be done sometimes. In terms of Brent's pulmonary health, he aspirated reflux, he is much better. His esophagus has had the chance to heal from the very severe reflux damage, although now he is afflicted with EE along with some continuing reflux still. Would I do it if I knew what I know now and I was in the same situation? Probably because I had no other choices,from the aspiration, to the damage in his esophagus,and even the type of hernia he had were all potentially life threatening. Then again, there is a high probability that Brent has Vagus Nerve Damage from his surgery. It's all risk unfortunately, and dont let anyone sugarcoat it for you....Many doctors do not inform parents of all the risk involved. There is also a j/tube, which bypasses the stomach and feeds straight into the jejunum, it helps many children with motility problems that cant tolerate ng or g tube feedings. We may be going that route. Brent is the same way with his feedings, constantly backing up,formula just sitting there, he is on a feeding pump 24 hours a day, (he cant eat because his food doesnt leave his esophagus and he aspirates) Even though he has motility problems, he still has to be tubefed, and he did even before his esophagus stopped working. Malnutrition and hunger only add to the pain,illness,developmental delay,emotional problems that he and other children like him go through. Hugs, and I hope you are able to get the testing she needs to get her figured out and feeling better.
Check with your
doctor first!