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Jul 05, 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
HELP!!! Please advise
Guys I'm in serious need for your help. I am having major kidney/bladder problems. I have a really bad history of this w/ chronic infections and stones. I am literally peeing blood right now(sorry very tmi). I called my urologist and he called me in an antibiotic, but chances are I'm going to end up in the hospital. If I have to be put to sleep or on major pain meds, I won't be able to nurse. I am trying to get as much pumped as possible, but it is very hard. Right now I have only about 2.5oz and I plan on going to the ER before days end, unless there is a miracle. I was wondering what formula I should get in case he has to have that. Right now, my diet is completely free of wheat, nuts, dairy, soy, corn, and alot of other things. I don't know what to try. When we discussed trying formula before, the pedi suggested Alimentum. Would you say this would be the best given his current diet. We have definite soy and milk issues as well as some others. I'm really not sure what all. What should I do? Chances are, he's not going to take the formula any way, but I have to have an option for him.
Jul 05, 2008
mainemom
Mom of 2 great boys. Payson is three and healthy. Willis is 1.5 and has possible silent reflux. We are still working with his GI to get a diagnosis. He is on Prevecid 15mg.
Oh my! I feel so bad for you! I'm not sure about formula. I used alimentum with Willis but if I remember correctly it may have had traces of soy in it. Rice milk wouldn't have enough calories for him would it? Maybe you could try that for short term if absolutely necessary if he won't take the formula. I'm really no help to you but I'll be thinking of you! Good luck and I'll be praying that you have a quick recovery!
Jul 05, 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.... :(
Oh no! That is terrible! You need to get the the ER right NOW! Please keep us posted. That sounds terrible, and I'm thinking of you. Take care of yourself so you can take care of your little man. Sebastian gets diarrhea from Alimentum, but my new baby nieceis allergic to dairy and does fine on it. If I were you, I'd get Neocate or Elecare. Only .03% of kids have a problem with either one, so Cooper will probably be fine on them. Sebastian allergic to everything under the sun, and he tolerates Neocate just fine! You can't get it over the counter, so ask you doc for a prescription for it and go get it from yourTarget or CVS or whatever pharmacy. It is around $45 a can, so be prepared to shell out some cash.

When we switched to formula, I thought Bassy would NEVER take it - and at first he wouldn't. But just like everyone told me, when he got hungry enough, he DID. I bet Cooper will, too.

Go to the ER now!
Jul 05, 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
Ok, I got a hold of some elecare and it is only $35 at our local pharmacy. I'm headed to the hospital soon. I don't know what is in store, but I will update as soon as I can.
Jul 05, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
Photobucket
if you can't get the neocate or elecare, go with nutramigen formula. Q did well on that. I hope that you get better. I'm so sorry about what is going on with you! -Sarah
Jul 05, 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
Glad you got the elecare. That would be your best bet for kiddos with multiple food allergies.

I pray everything goes well and you are back home soon. HUGE HUGS!!!!!
Jul 05, 2008
daniejo
Mom (Danie) to Adam (9-4-03) & Nate (3-7-07) Nate was diagnosed with silent AR at 2 months old. He was on neocate, prevacid 30mg per day and couldn't start solids till he was almost 8 months old. He started cow's milk at 14 months and is currently off all meds!! So far so good :) PIC: Disney trip 2008. Nate didn't know Piglet was there, he didn't like the characters too much.
Glad you got the elecare...I was going to suggest that or neocate. I hope you are feeling better soon. I am thinking of you...please let us know how you are!!
Jul 05, 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.
we use alimentum and mine is definitely allergic to milk and soy...if you bottle feed BM you can always mix the two if you need to. i'm sorry that you are ill!
Jul 05, 2008
lauren'smom
Jennifer - 1st time mom. Lauren (6/1/07) diagnosed 9/07 with GER at 3 1/2 months. Prevacid 7.5 mg in the am. Currently drinking whole milk and eating great!!
No longer aspirating! Yippee!
Picture: Why would Lauren play with the hundreds of dollars worth of toys scattered in my living room?!?! When she could play in a box! Estimated move date: Oct. 3rd!
I am so sorry to hear that you are sick! Hopefully your hospital stay will not be too long...Elecare or Neocate are the two I would recommend as well. Keep us posted when you can!
Jul 05, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
MOLLYBETH!!! Please update as soon as possible. We are praying for you!
Jul 05, 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
Thanks guys, I just got home. I got a bag of fluids and the did a bunch of labs and a ct scan. thankfully there was no blockage and my kidney wasn't swollen. That was my fear. Basically they think I have a raging infection but aren't to sure why I have so many red blood cells in my urine. There wasn't really anything they could do for me , so they went ahead and sent me home. Fine by me. I'm on cipro and pain meds. I'm pretty miserable right now, so as soon as I get something down to eat, I'm off to bed. I'm going to see my urologist sometime next week so hopefully we can get it all figured out. I never had to give Cooper any formula b/c they didn't give me anything that wasn't bf safe. I will defiantly be keeping the elecare in the cabinet for any future emergencies. Thanks again for all the well wishes.
Jul 05, 2008
daniejo
Mom (Danie) to Adam (9-4-03) & Nate (3-7-07) Nate was diagnosed with silent AR at 2 months old. He was on neocate, prevacid 30mg per day and couldn't start solids till he was almost 8 months old. He started cow's milk at 14 months and is currently off all meds!! So far so good :) PIC: Disney trip 2008. Nate didn't know Piglet was there, he didn't like the characters too much.
Thanks for the update. I have been thinking of you. I hope you can get some good rest...take care.
Jul 05, 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+.
I'm glad you are home and that you didn't have to use the Elecare or worry about him not drinking it. I hope the meds kick in soon and you feel better fast. I hope the urologist provides you with some answers next week. Keep us posted and take it easy and get some rest.
Jul 06, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
We are thinking of you. I hope the meds let you get some rest at least. Pain and taking care of kids is no fun. :( Let us know how you are doing when you have time. ((HUGS))
Jul 06, 2008
lauren'smom
Jennifer - 1st time mom. Lauren (6/1/07) diagnosed 9/07 with GER at 3 1/2 months. Prevacid 7.5 mg in the am. Currently drinking whole milk and eating great!!
No longer aspirating! Yippee!
Picture: Why would Lauren play with the hundreds of dollars worth of toys scattered in my living room?!?! When she could play in a box! Estimated move date: Oct. 3rd!
Glad to hear you're back home, hopefully you'll feel better soon too!
Jul 06, 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.
glad to hear you are back home. hope you are feeling better soon. on a side note, did you look at that other post about Cooper's weight
Check with your
doctor first!