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Sep 09, 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.
What if they kill her/rant
We will definitely be finding a new pedi. We are also looking into John Hopkins, Vanderbuilt, Boston children's, or anyone who can help. Where ever we go, we will have to find housing for the time we are there. Looks that most all do things on outpatient. Megan lost weight again. The pedi. wants her back in the hospital that overdosed her. I said no, I am not comfortable with that. They are making it like I am going against Medical advice and not doing right by my daughter. I asked for a referral to John Hopkins and the pedi said we have not exhausted our options here. I could not help it. I said she was hospitalized for 10 days here (just for her last visit), overdosed, sent home worse than she started. So, what options are those-kill her. She was hospitalized I think she has been hospitalized 6 times here between our two children's hospitals, for the same thing. Each time she came home worse than when she was admitted. Each time they sent her home saying she isn't getting better here, she is better off in her own environment. The pedi also said they generally don't give out the ingredients to the vaccinations cause if people knew they had antifreeze, mercury, and formaldihyde that no one would take them. This is not acceptable. I feel very frustrated that it is so hard to get proper health care for my daughter. I think there is no question, we must go out of state.
Sep 09, 2008
nicholas'smom
That is just awful! What state are you in?? Definitely go where you must to get her the care she needs. Good luck & prayers to you!
Sep 09, 2008
molson1525
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+.
You can always stay at a Ronald McDonald House. At most of the major hospitals there are typically a Ronald McDonald house nearby where you can stay for free. Our insurance covers our hotel fees while my son is inpatient but I have pretty good insurance. As for your ped, definitely time to find a new one! You have the right to go wherever you feel comfortable since it is your child. I would never go back to a hosptial that overdosed my child. There are two hospitals nearby that I won't step foot in because they are so awful. I will drive hours to the better one just to be seen. So do whatever you have to to get her the care she needs. If you are looking for hospitals you should find one with a diagnostic center that maybe can put all the pieces of the puzzle together instead of just seeing a ped, GI etc. I hope you get some answers soon.
Sep 09, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
I am so sorry you are dealing with all this!! Since becoming a member of this board and dealing with reflux, I have lost a lot of faith in the medical system, both in Canada and the US. Yikes. I wish you luck trying to find your lo the best treatment available. HUGS.
Sep 09, 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
If you are close enough I would go to BCH (Boston's Children's Hosp). Iknow some pretty complex emdical children that get seen there and they LOVE it.

Sorry you're having all t hese issues. I don't blame you for going else where. May contact BCH and see if theycan hlep you on there end get an appt there.

Sep 09, 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.
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I am so sorry that you are having to deal with all of this. Keep fighting them, and do what you feel is best for her.
Sep 09, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Wow! I'm totally amazed. So I guess parents are just supposed to be kept out of that loop, huh. Geez...girl, I can't imagine the things i would have said to that man. I left my ped bc he wouldn't stop prescribing meds that gave Mags the hives.
Sep 09, 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.
We are in the GREAT Atlanta, and dealing with the world known Emory hospital and graduates. My brother-n-law lives in Egypt and he is in Med school. He says until Meggy had all her problems, Egypt thought Emory was the best hospital in the world. He has let many of the major hospitals there know otherwise. Boston is 20+ hours drive from us, but we have someone in the middle of the drive that we could stay with for a few days each way of the drive. So we would drive about 10 hours every night. It is so far away, but we are willing to go where we need, and do what it takes to get her well. She deserves to live with a good quality of life.
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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Yikes to the drive and the number of admits and everything else. How many diagnoses have been ruled out? I noticed in your siggy that the pedi says there are other things to rule out before looking at that syndrome and mitochondrial disorder.
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 sorry to hear that you are going thru all of this. have you contacted the Magic Foundation re: RSS. maybe they can become another advocate? i can't believe that they are being so insensitive. hugs.
Check with your
doctor first!