Posted By Posting
Oct 20, 2008
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including,,, 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.
Scary Moments
Please keep Meggy in your prayers and thoughts. We have had a horrific week and tonight just got worse with 2 episodes of what looked like sandifer's and then a blue spell.

I cannot figure out what set her off or how to help. It is breaking my heart. We have given all allowed meds at highest allowed dosage and allowed amount of times every day with no relief.

The GI on call said it is probably sandifer's not to worry and to call her regular GI in morning. She told me just to up her dosage of tylenol and give motrin regardless of previous warnings against it.

It really worries me when she has these sandifer spells along with turning blue.

Oct 20, 2008
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
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,
NPO tubefed continuous elecare 24 hours/day
I'll definately be praying for her.Many hugs Engin Does she have a pulmonologist? I would be concerned about her turning blue as well.
Oct 20, 2008
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
BIG HUGS! After a year and a half of watching my child turning blue and having him do it twice in a matter of days I finally consented to the Nissen. I just couldn't sleep at night. It of course wasn't the only reason we did it and I am by no means saying that is what Meggy needs. I just wanted to say that I know what it is like to feel scared for your child and having your heart break not knowing how to help. I hope it gets better soon. I would definitely call GI in the morning. They always admitted Aidan when it happened and monitored his breathing for 24 hours to make sure it was just the GERD and nothing else going on. Hang in there.
Oct 20, 2008
ethan's mom
Meridith, mom to Ethan born 4/23/08. Ethan was diagnosed with reflux at about 1 month. He has been on Zantac (unsuccessful) and Prevacid. He is currently taking 7.5 mg of Prevacid 2x per day, with good results. We also suspect MPI, though this hasn't been confirmed by a doctor yet.
Ethan is mostly breastfed, though we are doing one bottle of soy formula each day. We also do some homeade "solids' including, so far pears, avocado, sweet potato, and peaches.
Oh poor Meggy, and mommy. I'll say a prayer for you guys tonight.
Oct 21, 2008
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
I have never heard of Sandifer's itself causing blue spells. All I can say is that our first pedi ignored her blue episodes and said "reflux reflux reflux", but when she was admitted to intensive care for it we finally got the drs concerned enough about it that they kept looking for a dx...and it was the malrotation along with severe reflux. she was protecting her airway from the refluxed breastmilk so they said in a way it was a good thing, but having to have an alarm on your child's bed and trying to manage the blue episodes daily is extremely scary! i hope you can find out what is causing Meggy's. Did you ever find out about that intestinal disorder they were looking at? Intususseption or something like that?
Oct 21, 2008
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Arching and turning blue says obstructed airway to me. My son has Obstructive Sleep Apnea, and he sometimes gets into practically a "c" shape he arches so much at times while sleeping. I suppose this could also occur while a child is awake, as the belief is that the posture (in this instance) is an effort to maximize space for airflow... I'd definitely push the envelope to make sure they take it seriously!
Oct 21, 2008
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.
hugs and prayers
Oct 21, 2008
amber f
That has to be so scary. I hope they can figure it all out. (((HUGS)))
Oct 21, 2008
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 no!!!! she is in our prayers for sure!!
Oct 21, 2008
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Adriane and Meggy share more than just reflux and May birthdays. We had two apnea alarms last night. She was blue for 30 minuntes this morning. You know that A turns blue sometimes when she has a seizure. It isn't that she isn't breathing the whole time but it has happened and then gotten better afterwards or even in the middle of it.

I'm not saying that Meggy is having seizures but I am just wondering if they have done a long term EEG on her. We have done two one in the hospital and one at home. The at home was much easier. She had a little back pack to carry around with the all the stuff that was monitoring her. Neither are fun but it gave us some information. We know that she does have seizure activity. It isn't severe. I think that a neuro would be worth checking with.

Oct 21, 2008
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
That is so scary! I don't have any advice - just sending big hugs your way.
Oct 21, 2008
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including,,, 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.
Thank you everyone. The GI has yet to return my phone call. I took her in to the pediatrician. She said she definitely thinks it is pain related. Meggy was arching her back and screaming so loud and hard right in front of the doctor today which is a good thing if it has to happen.

The pedi. was so disappointed in Meggy's GI office and tried to call them herself but still no return call. She suggested getting in touch with John Hopkins again. She said if no one here will listen it is time to go back.

Usually she just cries if they touch her at the doctors office. She showed that she lost 2 ounces in a week. Who knows though. It is such a small amount that it could have been her diaper or socks or what she ate or drank.

Thanks for all the support. I cannot describe how great it feels to know that you are all here for me and caring so much.

Check with your
doctor first!