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Sep 10, 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.
John Hopkins for Meggy
Of all the hospitals we called, John Hopkins can get her the quickest, not this coming Friday but the next. (Sept. 19) They have Failure to thrive specialist. It is just a basic appt. to get established. They will look her over, check her med. records, then give us a plan of action-tests, doc. visits, ect. After that we are to go back end of October for whatever testing they decide she needs. I hope we can get some answers and help. I just called, told them my story and that her ped is not willing to cooperate. They said fine, come on up. I am so happy I found all of you. It is so nice to have so many kind people to help out. Have a great day.
Sep 10, 2008
mommyto2
BRANDON-Zantac and Bethanacol; Neocate formula, 2 sets of ear tubes, Adnoids removed, Vasomotor Rhinits, Asthma. Currently on: Xyzal, Omnaris, Flovent and Xopenex,
AUBREY-Zegerid 2x a day, Soy Milk, Tubes put in and adnoids removed (11-7), Hypotonia, ECI therapy for low muscle tone throughout trunk and hips, oral motor issues and sensory integration issues, delayed speech, Teething, probiotics
PICTURE: Aubrey in her cute cat outfit. If you look you can see how her right foot turns in. She walks that way as well. It is not as exaggerated in the morning's but gets worse in the evenings. This was after her nap.
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We are glad you are here also! I am glad you are able to get in so quickly! Keep us posted. I hope you can find some answers.
Sep 10, 2008
mommy2max&lucy
Patti, mom to Max (3/04) with EE and chronic sinus issues; Lucy (6/07) with reflux
Glad to hear that you got an appointment that quickly! Hopkins has a great allergy department so you may get some help with the EG as well. Good luck! I am excited to hear how it turns out!
Sep 10, 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 hope everything goes well, that is just fantastic!!!! YAY YAY!!!!!
Sep 10, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Good for the quick appt! I want to warn you that we go to Hopkins. We are absolutely thrilled with the allergy department (Dr. Wood is incredible). We are NOT, NOT, NOT happy at ALL with the GI department. I can't name names on this board, but if you would like to email you the name of Sebastian's doc, I will. She was horrendous. She blew us off for months and then misdiagnosed him with Celiacs...which he does NOT have. After making her crackpot diagnosis (he tested negative on all three tests), she told us to cancel our pending appt with Dr. Wood because he didn't need an allergist. HELLO - see my signature!!!!! The allergist was appalled by both the diagnosis and the order that we cancel the appt. I am sure most docs there are fine, but I did want to share our experiences with you.
Sep 10, 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).
Good! SO glad you get quick action. Waiting is so terrible!
Sep 10, 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.
Thank you all so much.
mdbarbagallo, maybe I missed it in your profile, but I didn't see your email. I am so happy for any help I can get.
Can't wait as I want her better sooner than later. Her treatment may end up taking a while, who knows but at least we can get on the right track.
Sep 10, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
i'm so glad that they are going to see her. how does that work iwth insurance?
Sep 10, 2008
amber f
Good luck~ I hope you get some much needed answers.
Sep 10, 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.
I am sending hugs and wishes for luck! Glad you were able to get in!!!!! Let us know
Sep 10, 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.
Hurray for the quick appointment!
Sep 10, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
glad you got in quickly. Hopefully you will get some much needed answers
Sep 10, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Has she had genetic testing yet or are you going to do that at Hopkins. I remember your post about russell silver syndrome and thought it sounded like Turner's syndrome. My niece has Turner's and the symptoms are quite similar to RSS. Just a thought.
Sep 10, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Hi there - my email is mdbarbagallo@hotmail.com. ~Melissa
Sep 10, 2008
nicholas'smom
Glad to hear you're going to JH. Hope they are able to give her the help she needs. Good luck.
Sep 10, 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.
Thank God we have BCBS PPO, they said they would be glad to have a diagnosis and treatment so she is not in the hospital so much. We referred ourselves. They are proferred providers so we will just pay copay.

Developmentally Megan is on target or ahead. She is a very bright child, and extremely observant of her surroundings. She already speaks 3 word sentences, and over 50 single words. She can mimic most 6 letter or less words.

Megan has had so much testing, mainly for GI.
Ph probe,
Upper GI,
2 endoscopies,
barrium swallow,
Ng tube for feeding,

Genetic wise:
methylation study for RSS on the H19 gene,
Sweat test for CF,
chromosomal analysis,
chromosomal microarray,
basic metabolic testing,
Urine organic acids,
blood amino acids,

Several CBC's,
several metabolic panels,
several urinalysis,

Sep 10, 2008
elysabethsmom
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
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I am SO HAPPY you got in so quick! We had an uncooperative pedi before we took matters into our hands and found a hospital with great GI and pediatric surgery. Had we stayed with the old pedi our dd could have lost her life, due to his lack of advocacy, incompetent staff, and unwillingness to take our concerns to heart.
Sep 11, 2008
elysabethsmom
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
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Oh yeah, and I am a SLP....Meggy is ADVANCED in her language skills....WOW, 3-word sentences! Given her adjusted age of 15 mos, language -wise she is doing AWESOME! A lot of kids don't even have 50 words until around 18 mos, and that's when they typically start using combos.
Sep 11, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
I'm glad that you have a cooperative insurance company. will be waiting to hear from you.
Sep 11, 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.
I'm soooooooooo happy to hear she is going to one of the big name hospitals. It really is necessary in cases like this. All the best & keep us updated. Ellen
Check with your
doctor first!