Posted By Posting
Oct 16, 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
Found a new EGID link/GI Appt yesterday
Our GI yesterday said after the scope if the eos level hasnt improved,and no one thinks it has, that because he is already on only elemental diet and on steroid treatment already as well, that she would be sending Brent to Dr. Rothenberg in Cincinnati to the Eosinophilic Treatment Center or to Dr. Furuta in Colorado at their Eosinophilic Treatment Program. Over 99% of kids with EGID clear on elemental formula and steroids, so Brent unlike anything anyone has seen.Basically, she said she couldnt do anything more to help his GI issues, it is too complex now,which is why she sent him to Dr F, the Motility spec from Hopkins, and why he will be heading to Cincy or Colorado. I guess she will just handle the Basics... She agreed about the nerve damage.Back after Brent had his procedure and was choking so bad initially, and so sick, we thought the fundo may have been to tight, it wasnt. Our GI had discussed it with our ped surgeon and he agreed there very well may be some problems, it was a VERY difficult procedure to accomplish, he had a very hard time because Brent's anatomy was in such bad shape(the bad hernia, the worst he had ever seen), the damage he had in his stomach and esophagus, plus Brent's stomach was shockingly TINY (it only had 30 cc capacity, very abnormally small) so he had a very hard time working with his stomach to even do the wrap...He was in bad shape...His Lap Fundo took over 5 hours to complete because of complications..So now I worry even more... Lauren has Small Bowel Bacterial Overgrowth Syndrome because of her poor motility. She is starting Flagyl treatment today. She is also (I was shocked) backed up with stool even on 2 caps of miralax a day:( She has been bloating terribly, it is horrible... Photobucket Isnt that pitiful?? :( I hope the Flagyl helps. Her reflux is acting up too, got the asthma going some. I am so stressed.....
Oct 16, 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
The EGID link:http://tiger-egid.cdhnf.org/................... Also here is Lauren in the morning not bloated.. Photobucket and bloated again... bloating
Oct 16, 2008
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
oh gosh! ouch! poor girl! ouch!
Oct 16, 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.
Jessica,

I am so sorry u r dealing with so much. I am glad u continue to look for the best of care for your children. I hope that someone somewhere can help Brent. He has been through so much already and it would be nice if he had a chance for a break.

That does sound like a very tiny amount for a tummy to hold. I guess he would have to have continuous feeds just to maintain weight.

Wishing Brent well soon. I hope Either Cincinnati or another treatment center somewhere can help.

Oct 16, 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.
I'm sending you lots of hugs...Hope your Lo receives excellent medical care.
Oct 16, 2008
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
I am so sorry that you are dealing with all this. I can imagine the stress you are under is unbelievable. I really pray that you will get the help you need at the EO programs.

Poor baby girl. I hope she can feel better soon. To have two kids dealing with GI issues is so tough

You are such a strong mommy and I know you will not quit until you find answers for your little guy and gal

you will be in my prayers.

Have you tried mineral oil for the pooping.

Oct 16, 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
We've tried everything... I am going to do a cleanout then start over, I hate to because the SIBO actually has her leaking stool already... I have 4 kids dealing with GI issues(I wont go on and on lol, it's in my story on my profile), but the other 2 are much less severe as of right now, Thank Goodness!!! Thank you all for the well wishes! Brent will probably be having more procedures(including his scope, he hasnt had it yet) on the 23rd or the 27th, I still havent gotten the exact date(Rant and Rave!!! It's been 3 weeks I have been waiting on dates because of different specialists involved)
Oct 17, 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.
As far as the nerve damage - any chance he is low on B12? Drugs like Prevacid reduce stomach acid which is needed for the absorption of B12. Chronic B12 deficiency can cause nerve damage. Just a thought. Ellen P.S. My 9 yr. old daughter used to have horrible constipation, which got better around age 8. Looking back I really think it may have been milk related. I hope it wasn't anything else since her brother has e.e.
Oct 17, 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
No, it isnt from deficiency. Vagus Nerve damage, it would be caused by his hernia or the fundoplication. Thanks for the thought though.
Check with your
doctor first!