Update on Libby - Parent-2-Parent & Reflux in Children

**momlwt** · May 3rd, 2006, 11:53 AM

With dealing with the new server and such I haven't posted an update for a little while. Oppps

Well we are down to only 2 doses of Levsin a day as well as the Elevil at night. We had a stretch of 10 days with no pain (thankfully while I was fighting with the server LOL) but when we tried to wean the 6 AM dose of Levsin the pain started back again. It took a few days to get her back on track but no pain last night so we get to start counting again.

Her home instruction has finaly started. She has 2 months of work basicly to catch up on. She has the tutor come in for 5 hours a week and then I have been working with her too. I hope this will be enough for her. I know yesterday her tutor commented on the fact that she was yawning through the time that she was her but as I told her this is the norm when she had a bad night the night before. The very reason why she can't be at school right now.

But all in all she is doing really well. We will try again in another couple of weeks to wean that 6 AM dose of Levsin but I am really following her body on this one for now.

Pilsbury · May 3rd, 2006, 12:04 PM

I am glad things are going ok for Libby at the moment .
Thanks for updating us .

mommytothree · May 3rd, 2006, 12:32 PM

Kim,I am so glad to know things are atleast looking up for Libby.You have had your hands way full with her and then all you have done for P2P!!! Thanks!!! BTW!!!!

Dawn218 · May 3rd, 2006, 12:53 PM

I'm glad things are getting better. I hope she keeps up with her school work. I hope the weaning goes well the next time you try.

kylconkie · May 3rd, 2006, 02:10 PM

I'm so glad that she is feeling better and getting a little bit of narmalcy back.

**~ Jennifer ~** · May 3rd, 2006, 02:33 PM

Kim, I'm so glad to hear that you've been able to decrease the doseage and Libby is having longer periods of being pain free. I hope they continue...

**sknmom** · May 3rd, 2006, 03:35 PM

I'm glad to hear that Libby has been doing better. I hope that she'll be able to catch up on the schoolwork she's missed and of course that you'll get rid of that 6 AM Levsin dose soon!

**JacksonsMom** · May 3rd, 2006, 04:36 PM

Glad things are going better for her.

Melh420 · May 3rd, 2006, 04:38 PM

Glad things are getting better for Libby!

**srmina** · May 3rd, 2006, 10:54 PM

I am glad she is improving.

May 3rd, 2006, 11:53 AM	#1
momlwt Technical Director, Community Manager & Co-Founder Community Host of Fundo Decisions forum Join Date: Nov 2003 Location: Columbus, Ohio Posts: 1,366	Update on Libby With dealing with the new server and such I haven't posted an update for a little while. Oppps Well we are down to only 2 doses of Levsin a day as well as the Elevil at night. We had a stretch of 10 days with no pain (thankfully while I was fighting with the server LOL) but when we tried to wean the 6 AM dose of Levsin the pain started back again. It took a few days to get her back on track but no pain last night so we get to start counting again. Her home instruction has finaly started. She has 2 months of work basicly to catch up on. She has the tutor come in for 5 hours a week and then I have been working with her too. I hope this will be enough for her. I know yesterday her tutor commented on the fact that she was yawning through the time that she was her but as I told her this is the norm when she had a bad night the night before. The very reason why she can't be at school right now. But all in all she is doing really well. We will try again in another couple of weeks to wean that 6 AM dose of Levsin but I am really following her body on this one for now. __________________

May 3rd, 2006, 12:04 PM	#2
Pilsbury P2P Supporter: Join Date: Nov 2003 Location: Hampshire,England Posts: 2,090	Re: Update on Libby I am glad things are going ok for Libby at the moment . Thanks for updating us . __________________ Penny mum to Catherine (5) Fiona (9)ADHD,Ehlers-danlos syndrome(hypermobility) Laura(7)Ehlers-danlos syndrome (hypermobility)GORD, Congenital Hiatal Hernia and short oesophagus (surgically repaired)Nissen fundoplication,oesophageal strictures,gut motility dysfunction,Irritable Bowel Syndrome,Urinary retention,Megacolon. Lucky wife to Dave for 11 years (Gone to the stars -30th June 2005) http://angbandbarlow.blogspot.com/

May 3rd, 2006, 12:32 PM	#3
mommytothree P2P Supporter: Join Date: Jul 2005 Location: SouthEast Posts: 1,111	Re: Update on Libby Kim,I am so glad to know things are atleast looking up for Libby.You have had your hands way full with her and then all you have done for P2P!!! Thanks!!! BTW!!!! __________________ 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 3rd, 2006, 12:53 PM	#4
Dawn218 P2P Supporter: Join Date: Aug 2005 Location: Pennsylvania Posts: 3,658	Re: Update on Libby I'm glad things are getting better. I hope she keeps up with her school work. I hope the weaning goes well the next time you try. __________________ 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 3rd, 2006, 02:10 PM	#5
kylconkie P2P Supporter: Join Date: Nov 2004 Posts: 1,071	Re: Update on Libby I'm so glad that she is feeling better and getting a little bit of narmalcy back.




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May 3rd, 2006, 02:33 PM	#6
~ Jennifer ~ Host Coordinator & Community Manager Community Host of the Towne Centre Join Date: Nov 2003 Posts: 12,545	Re: Update on Libby Kim, I'm so glad to hear that you've been able to decrease the doseage and Libby is having longer periods of being pain free. I hope they continue... __________________ 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 3rd, 2006, 03:35 PM	#7
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: Update on Libby I'm glad to hear that Libby has been doing better. I hope that she'll be able to catch up on the schoolwork she's missed and of course that you'll get rid of that 6 AM Levsin dose 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 3rd, 2006, 04:36 PM	#8
JacksonsMom Community Host of Adaptive Equipment P2P Supporter: Join Date: Feb 2005 Location: Chicago, IL Posts: 7,151	Re: Update on Libby Glad things are going better for her. __________________ 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 3rd, 2006, 04:38 PM	#9
Melh420 P2P Supporter: Join Date: Sep 2005 Location: Wichita, Kansas Posts: 2,117	Re: Update on Libby Glad things are getting better for Libby! __________________ Ethan (16lbs 5ozs.): 07-13-05 Reflux, DGE, umbillicul hernia, heart murmer Atrial Septal Defect, Pulmonary Artery Stenosis Medications: Tried Zantac, Reglan...now on Prilosec and Bethanechol Formulas: Tried Prosobee, Nutramagin, Alimentum, Neocate...Back on Alimentum Tyler (31lbs.): 07-24-02 Reflux...Possible asthma/allergies..Mild Speech Delay Medications: Prevacid and Singulair Weekly Speech Therapy Michaela (47lbs.): 11-26-98 Melony(Mother): 08-28-79

May 3rd, 2006, 10:54 PM	#10
srmina Community Host of Tube Feeding Issues and Adaptive Equipment P2P Supporter: Join Date: Apr 2004 Location: Chicago Posts: 11,054	Re: Update on Libby I am glad she is improving. __________________ 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

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