All I know... - Parent-2-Parent & Reflux in Children

**iamblessed** · May 4th, 2006, 05:26 PM

I don't have results of the CT scan. But, after we finished, we drove across the street to eat at Noah's fave restaurant. As we were finishing, the radiology nurse called me to say the Radiologist needed us to come back. He wanted Noah to do another CT with oral contrast. (The first was with IV contrast.)

So, we went back and did the oral contrast. What the nurse told me was when the Radiologist came to read the first scan, there is part of his esophagus that was not visible at all. She said they could follow the esophagus to a point, then it disappears, then reappears. So, he wanted the oral contrast to see "where" the esophagus goes.

Obviously, *something* is wrong here and I am driving myself mad with possibilities. I am hoping they will call me before the weekend with news.

**sknmom** · May 4th, 2006, 05:38 PM

Waiting is definitely hard. I hope you get some answers soon.

mgt66 · May 4th, 2006, 05:39 PM

OH sweetie, {{{HUGS}}} I hope you get answers really soon. You are doing a wonderful job right now. You have been facing the unknown, and your facing it all on your own(but we are all here backing you!!, just wish we could be there physically) and you are showing just how strong you are, even though there are moments you don't feel it, it really shows. My thoughts and prayers will continue!

**JacksonsMom** · May 4th, 2006, 05:44 PM

Ugh, WAITING SUCKS! I hope you get results really soon. I hope you are able to find something to distract you to take your mind off it.

**nicholasmom** · May 4th, 2006, 06:05 PM

I hope you hear something soon. Waiting is so hard.

maggiesmom · May 4th, 2006, 06:18 PM

oh merilla i am so sorry.. i did not call you today because o/t and p/t lasted forever and we had to set up speech also so by the time we were finished it was 12:30 and I did not want to call you if you were on your way home and driving...... we will meet soon I promise Just not enough days in the week for all of these appts.. I hope things look bettter for Noah soon..

michaelsmum · May 4th, 2006, 06:52 PM

Sending hugs and hoping you get some answers and soon, waiting is a nightmare game, will be thinking of you both.

Hugs

Debby

fourgirls1boy4me · May 4th, 2006, 08:20 PM

I hope you hear something soon. Waiting is so hard and Sorry Noah had to back and do it again.

baileysmommy · May 4th, 2006, 08:32 PM

OHH sweetie!! How awful!! I HATE the waiting game, nothing is worse, doctors need to consider that!! I hope you hear somthing soon sweetie!

**srmina** · May 4th, 2006, 08:35 PM

I'm sorry you have to wait. I hope they get back to you ASAP.

**merrifay** · May 4th, 2006, 08:36 PM

I hope that you find something out before the weekend, waiting for test results is just awful. I'm keeping you and Noah in prayers, how is he doing with all of this? Lots of hugs for both of you.

**connorsmom** · May 4th, 2006, 11:10 PM

I hope you hear something soon. Waiting is the worst.

**Jareds Mom** · May 5th, 2006, 08:56 AM

I hope you get some answers quickly.

**~ Jennifer ~** · May 5th, 2006, 10:14 AM

I am so sorry that you are having to wait for answers....waiting is definitely the HARDEST part, sometimes. I hope they are able to offer you some answers soon sweetie. Please keep us posted.

mommytothree · May 5th, 2006, 11:43 AM

Merilla,Sorry I missed your call yesterday I did not get home until after 9pm.I will give you a call when I get everybody down for a nap.I agree I hope they can give you some answers before the weekend because it's so easy to drive ourselves insane with all the "what if's".Let me know as soon as you hear something!!! Thinking of you guys!!!

Dawn218 · May 5th, 2006, 12:23 PM

I hope you hear something soon.

kylconkie · May 5th, 2006, 02:45 PM

Poor Noah to have to go through it twice. I hope you have a plan soon.

Megan · May 6th, 2006, 06:29 PM

I hope you hear soon. Waiting is so hard!

**egh02** · May 7th, 2006, 09:18 AM

Sigh....what a rough road. I pray you get answers and the help he needs fast.

**ChillyJJ** · May 7th, 2006, 09:31 AM

At least you hadn't gone too far and were able to go back for the other CT easily. I hope you hear something soon Merilla..

May 4th, 2006, 05:26 PM	#1
iamblessed Community Host of Children's Medical Matters P2P Supporter: Join Date: Jul 2004 Location: In a world all my own! Posts: 3,521	All I know... I don't have results of the CT scan. But, after we finished, we drove across the street to eat at Noah's fave restaurant. As we were finishing, the radiology nurse called me to say the Radiologist needed us to come back. He wanted Noah to do another CT with oral contrast. (The first was with IV contrast.) So, we went back and did the oral contrast. What the nurse told me was when the Radiologist came to read the first scan, there is part of his esophagus that was not visible at all. She said they could follow the esophagus to a point, then it disappears, then reappears. So, he wanted the oral contrast to see "where" the esophagus goes. Obviously, something is wrong here and I am driving myself mad with possibilities. I am hoping they will call me before the weekend with news. __________________ NOAH (10/25/99)- 35 week preemie due to HELLP syndrome; asthma, reflux, congenital bronchial stenosis; double aortic arch (surgically repaired 12/1/04), IgG deficiency (outgrown!), hiatal hernia, possible seizure disorder undiagnosed; extrinsic esophageal compression, causing dysphagia and oral aversions: all around great kid and destined to be a 1st round draft pick! PRINCESS ABIGAIL (10/17/01)- chronic sinusitis, chronic ear infections, enlarged adenoids & tonsils (revised & removed 12/16/05), ecsema, asthma, chronic abdominal pain and re-diagnosed refluxer: Noah's biggest fan and the best little sister around! Noah's Website

May 4th, 2006, 05:38 PM	#2
sknmom Community Host of Towne Centre, Fundoplicaiton Issues and Middle & High School Years forums. Join Date: Nov 2003 Location: Southeast PA Posts: 8,186	Re: All I know... Waiting is definitely hard. I hope you get some answers soon. __________________ Patti mom to Spencer - age 17 - really loveable kid despite being a teenager! Refractory GERD, severe esophageal dysmotility and aspiration due to redundant neoesophagus, gastroparesis, chronic aspiration pneumonia, restrictive lung disease, pulmonary abcesses due to aspiration, GJ button recently changed to MICKey G button!! 1/93 Nissen fundo 1/94 uncut Collis gastroplasty-Nissen fundo with pyloroplasty 11/94 cut Collis gastroplasty-Nissen fundo w/G-tube 8/97 partial esophagogastrectomy and modified Belsey fundo 12/00 esophageal resection with jejunal interposition (esophageal replacement) 7/01 gastric augmentation using transverse colon (stomach enlargement) 2/04 Open lung biopsy

May 4th, 2006, 05:39 PM	#3
mgt66 P2P Supporter: Join Date: May 2005 Location: Florida Posts: 391	Re: All I know... OH sweetie, {{{HUGS}}} I hope you get answers really soon. You are doing a wonderful job right now. You have been facing the unknown, and your facing it all on your own(but we are all here backing you!!, just wish we could be there physically) and you are showing just how strong you are, even though there are moments you don't feel it, it really shows. My thoughts and prayers will continue! __________________ ~MG~ Wife To Chris (12-20-86) Mom To Jessi (18), Kevin (17), Nathaniel (12), Logan (8), Zachary (7) http://www2.caringbridge.org/fl/zacharywilliam/ Favorite quote:Friendship is born at that moment when one person says to another, "What! You too? I thought I was the only one!" C. S. Lewis

May 4th, 2006, 05:44 PM	#4
JacksonsMom Community Host of Adaptive Equipment P2P Supporter: Join Date: Feb 2005 Location: Chicago, IL Posts: 7,151	Re: All I know... Ugh, WAITING SUCKS! I hope you get results really soon. I hope you are able to find something to distract you to take your mind off it. __________________ Chaney Mom to 5/31/03 Vaccine-induced encephalopathy since 12/9/04 severe GERD, GJ-tube fed due to dysphagia and sensory aversion, CP (spastic quadriplegia), seizures meds: keppra, robinul, miralax, zantac, neurontin, zelnorm www.jacksonpresleydiamond.com

May 4th, 2006, 06:05 PM	#5
nicholasmom Community Host of Immune Disorders & Deficiencies, Medical Matters, Preschool Years, and the Elementary Years forums. P2P Supporter: Join Date: Nov 2003 Location: Nebraska Posts: 9,227	Re: All I know... I hope you hear something soon. Waiting is so hard. __________________ Amy, Mom to Kayla 1/17/96, Epilepsy takes Keppra and Relpax Noah 2/1/99, Mild Reflux takes Prevacid and Nasonex Nicholas 12/21/02 , Common Variable Immune Deficiency (CVID), Asthma, Reflux, takes D'Allergy Jr, Nasacort AQ, Bactroban Nasal spray and Miralax daily and other meds prn and gets IVIG every two weeks SubQ at home Visit Nick's website




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May 4th, 2006, 06:18 PM	#6
maggiesmom P2P Supporter: Join Date: Jan 2006 Location: louisiana Posts: 572	Re: All I know... oh merilla i am so sorry.. i did not call you today because o/t and p/t lasted forever and we had to set up speech also so by the time we were finished it was 12:30 and I did not want to call you if you were on your way home and driving...... we will meet soon I promise Just not enough days in the week for all of these appts.. I hope things look bettter for Noah soon.. __________________ Dana Proud mommy to Margaret (Maggie) Grace, Wife to Andrew,Pre eclampsia hellp, 25 weeker, 15.8 oz and 10 1/2 in long, gastrostomy and fundo at 3 months,iugr is on iron and synthroid Trying bottle feeds and spoon feeding Please visit my website:www.babiesonline.com/babies/m/margaretgrace Or babababies.com..click baby finder and put vieira

May 4th, 2006, 06:52 PM	#7
michaelsmum Join Date: Feb 2006 Location: Herts, UK Posts: 65	Re: All I know... Sending hugs and hoping you get some answers and soon, waiting is a nightmare game, will be thinking of you both. Hugs Debby __________________ Debby Mum to Michael!! 24+5 Nov 99, Dysphagia, Pharengyl stage swallow impairment, Bulbar Palsy, Dysfluency, G-Peg fed, Hypotonia, Ligmentus Laxity. CLD/BPD, Autism and Learning Difficulties. Michael's website

May 4th, 2006, 08:20 PM	#8
fourgirls1boy4me P2P Supporter: Join Date: May 2004 Location: S. California Posts: 1,874	Re: All I know... I hope you hear something soon. Waiting is so hard and Sorry Noah had to back and do it again. __________________

May 4th, 2006, 08:32 PM	#9
baileysmommy P2P Supporter: Join Date: Feb 2004 Location: NC Posts: 976	Re: All I know... OHH sweetie!! How awful!! I HATE the waiting game, nothing is worse, doctors need to consider that!! I hope you hear somthing soon sweetie! __________________ Melissa- Tristan(7) asthma, wild man: John Bailey(3) severe asthma, Gerd, fundo x's 2, pylorplasty, g tube,Bronchiolitis Obliterans, IV steroids, IVIG monthy, my lil hero. http://www2.caringbridge.org/ca/bay/

May 4th, 2006, 08:35 PM	#10
srmina Community Host of Tube Feeding Issues and Adaptive Equipment P2P Supporter: Join Date: Apr 2004 Location: Chicago Posts: 11,054	Re: All I know... I'm sorry you have to wait. I hope they get back to you ASAP. __________________ Susan, mom of Sameer , 3/4/05, happy former spitter Karuna , 7/6/03, G-button Main Diagnoses: Hypoxic Ischemic Encephalopathy, Cerebral Palsy, Severe GERD and associated neurogastro issues, Seizure Disorder (type undiagnosed), Laryngomalacia, Vision Impairment Current Meds: Prevacid in Caracream, Levsin, Zantac, Lactulose, Keppra, Neurontin, Zanaflex, Botox Injections, Off Klonopin for now! Visit Karuna at http://www.karuna.agrawalkids.com

May 4th, 2006, 08:36 PM	#11
merrifay Community Host Community Host of Children's Respiratory Disorders P2P Supporter: Join Date: Oct 2004 Location: Corpus Christi,Texas Posts: 1,907	Re: All I know... I hope that you find something out before the weekend, waiting for test results is just awful. I'm keeping you and Noah in prayers, how is he doing with all of this? Lots of hugs for both of you. __________________ Mary, wife of Corbin mommy to: Caedon, "Buddy," healthy, my little man, 10-17-00 Caeley, "Precious," my princess, 12-01-03 rt. CDH, tracheobronchomalacia, trach, vent, reflux, g-j tube...meds: reglan, prilosec, aldactone, Diuril, lasix, albuterol puffs, flovent twice daily, feeds: 30 cal Elicare: am 55ml/hr, pm 25ml/hr, visit Caeley at: www.caringbridge.org/tx/caeley "Now unto Him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us," Eph. 3:20

May 4th, 2006, 11:10 PM	#12
connorsmom Community Host of Children's Behavioral Issues and the Elementary School Years P2P Supporter: Join Date: Feb 2005 Location: Texas Posts: 2,928	Re: All I know... I hope you hear something soon. Waiting is the worst. __________________ Melinda- Wife to Dale (Married 10-3-92) Proud Mom to: Sarah Corine (7-24-96) Viral meningitis at 3 mos., ADHD, CAPD (Central Auditory Processing Disorder), seasonal allergies Takes Paxil, Concerta, Zyrtec(as needed) Charles "Connor" (6-4-01) Reflux, Asthma, Allergy to mold and Oak trees, hypogammaglobulinemia Takes: Septra, Nexium, Pulmicort, Rhinocort, Hydroxizine, allergy shots, saline sinus rinse (Albuterol or Xopenex as needed),

May 5th, 2006, 08:56 AM	#13
Jareds Mom Community Host of Undiagnosed Disorders Support P2P Supporter: Join Date: Aug 2004 Posts: 2,497	Re: All I know... I hope you get some answers quickly. __________________ Sherrie Jakob (5) - Preclampsia - induced at 36 weeks now 55 lbs 48.5 inches tall and a great big brother. Jared (2) - 36 weeker, IUGR, PPHN, fundo, GJ-tube, pyloromyotomy, hypotonic, Horner's Syndrome, mitochondrial disorder. Takes Prevacid, Pulmicort, Atrovent, Iron, Carnitine, Procrit, Zelnorm, Lovenox, Diuril, Enalapril, Carafate, Zantac, mito cocktail on O2

May 5th, 2006, 10:14 AM	#14
~ Jennifer ~ Host Coordinator & Community Manager Community Host of the Towne Centre Join Date: Nov 2003 Posts: 12,547	Re: All I know... I am so sorry that you are having to wait for answers....waiting is definitely the HARDEST part, sometimes. I hope they are able to offer you some answers soon sweetie. Please keep us posted. __________________ Jennifer... Mom to Tyler (10yo Refluxer & DGE) Prevacid, Zelnorm, Miralax, Singulair, Allegra, Nasonex, and weekly Allergy shots Community Manager Host Coordinator & Community Host Towne Centre If you need assistance,help with the forums,or have questions please contact the community care team. communitycare@parent-2-parent.com

May 5th, 2006, 11:43 AM	#15
mommytothree P2P Supporter: Join Date: Jul 2005 Location: SouthEast Posts: 1,111	Re: All I know... Merilla,Sorry I missed your call yesterday I did not get home until after 9pm.I will give you a call when I get everybody down for a nap.I agree I hope they can give you some answers before the weekend because it's so easy to drive ourselves insane with all the "what if's".Let me know as soon as you hear something!!! Thinking of you guys!!! __________________ Ashley Married to Wonderful Husband Grady Parents to- Josie- Born 6-15-99 Dx-Relfux,Apnea,FTT,ADD Fundo-10 Weeks of Age G-Tube Placed 6 weeks later Tubes in ears at 12 Months Currently-Prevacid,Adderall XR Isabella Born 7-26-2001 Dx-Relfux,Apnea Fundo at 5 Days of age Tubes in ears at 15 months My Happy Healthy Little Girl!!! Emily Grace "Gracie" Born 7-10-2003 Premature DX-Undeveloped Suck/swallow reflex,Reflux,Apnea,Episodes of Wheezing Fundo August 2003 Repeat Fundo/Hernia/Stomach Repair June 2004 J-Tube Placement July 2004 Antro-Duodenal Manometry Dec 2005 Endoscopy Dec 2005 Resulted in the Dx of Sensory Nerve Damage,Vagal nerve Damage, Pseudo Obstruction,Gas Bloat Syndrome All these issues contribute to motility issues involving the stomach & intestines.Awaiting more testing to be done on the intestines and will discuss possibility of trying propulsid at that time. Current Meds-Erythromycin,IC Cyproheptadine

May 5th, 2006, 12:23 PM	#16
Dawn218 P2P Supporter: Join Date: Aug 2005 Location: Pennsylvania Posts: 3,658	Re: All I know... I hope you hear something soon. __________________ Dawn Mom to: Eoin, 7: Gastroparesis, GERD, Constipation, Autumn, 3: Energy girl with possible reflux, tubes in ears. Isabel, 1: Dysphagia, Acid Reflux, FTT, G tube, Left eye - iris/lens adhesions. Deidre, 20: Married and going to make me a Grandma, EDD-Dec.

May 5th, 2006, 02:45 PM	#17
kylconkie P2P Supporter: Join Date: Nov 2004 Posts: 1,071	Re: All I know... Poor Noah to have to go through it twice. I hope you have a plan soon.

May 6th, 2006, 06:29 PM	#18
Megan P2P Supporter: Join Date: Feb 2004 Location: Pennsylvania Posts: 1,389	Re: All I know... I hope you hear soon. Waiting is so hard! __________________ Megan Wife to Chris since 8/8/98 Mom to Maeve: 3/13/03 Complete AV Canal Heart Defect , Ptosis, Duane's Syndrome, Bilateral Postaxial Polydactyly (all surgically corrected) GERD and DGE Former NG then G-J tuber, now with MICKey G button Meds: Digoxin, Enalapril and Periactin. No more reflux meds! Jack: 5/20/00, Loving kindergarten http://mysite.verizon.net/maevecatherine (new site, still under construction) or http://www.carepages.com Carepage Name: BraveMaeve

May 7th, 2006, 09:18 AM	#19
egh02 Community Host of the Towne Centre and the Welcoming Corner. P2P Supporter: Join Date: Jan 2005 Location: Kansas Posts: 4,111	Re: All I know... Sigh....what a rough road. I pray you get answers and the help he needs fast. __________________ Liz- Wife to Big Joe ( served us all in Iraq April 2003- April 2004 and Jan 2005 to Feb 2006 ) Little Joe (7/7/03). Severe reflux, gastroparesis with other motility issues, possible protein allergy. GJ tube placement (11/03) first fundo (1/04) pyloroplasty (1/04) second fundo (3/05). 100% tube fed takes prevacid, EES, adarax, periactin, bentyl, zelnorm, zyrtec, and miralax as needed. Visit Little Joe at: http://www2.caringbridge.org/ks/joe

May 7th, 2006, 09:31 AM	#20
ChillyJJ Community Host of Crafty Creations and Behind Closed Doors Join Date: Nov 2003 Location: Ontario, Canada Posts: 7,396	Re: All I know... At least you hadn't gone too far and were able to go back for the other CT easily. I hope you hear something soon Merilla.. __________________ Jennifer B - SAHM to Michael (7/18/97) and Connor (3/22/01) "You may house their bodies but not their souls, For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams." - 'The Prophet' by Kahlil Gibran Come see what's new in the Crafty Creations forum!! For more adult conversations come see what's *Behind Closed Doors* (email comments@parent-2-parent.com for password)

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