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Jul 13, 2008
mely
Amalia 11/1/06, Silent reflux- Weaned off prevacid in the summer- back on again 15mg. Back on lactaid. Atalia- 6/17/08 DX with GERD and colic at 9 days of age. Appears to have mild MSPI. Upper GI. On Prevacid 22.5mg. Successful transition to whole milk! Eats everything!
Pic. Amalia and Atalia having fun at home.
To MSPI moms out there
Atalia has started something new, and took a turn downwards turn from last Wednesday. Her stools when I was mostly breastfeeding her were firmer than when my breasts dried out...then they got quite runny and every 3 days, the every two days until on Friday her one stool was diarrhea..then yesterday she had 3 diarrhea stools in a 24 hr period, and she is visibly extremely comfortable right before these stools and during the feedng before these stools and with the last one, you could hear her tummy rumbling like an adult when suddenly she passed the loudest gas- and not just one time, multiple times- and then diarrhea- then she was able to fall asleep. The weird thing is that she will have a couple of good feedings, then the third one she gets VERY UNCOMFORTABLE , arching, lifting legs up, her tummy (more like intestines) start rumbling and then BAM- diarrhea. So After the thrid diarrhea I started her on Alimentum...I know it can take 10-14 days to see a difference. My questions is- her diarrhea should stay the same or improve by 10-14 days- if it starts to get worse- then it's time to try Neocate or Elecare? The first two feedings with Alimentum went OK and the third one- she got real fussy again, arching,e tc...tummy (intestines) rumbling but no diarrhea (fell asleep). I know, too soon tot tell.. I'm calling the Dr. tomorrow, telling him what's happening, and if she has diarrhea again asking for a stool test for occult blood...Also I was thinking even if the diarrhea stops but she keeps being quite uncomfortable sometimes during feedings and I can tell it's not the reflux- to go ahead and try the Neocate - what do you guys think?. Thank you sooo much for your answers- I REALLY APPRECEIATE ANY ADVICE. God Bless and do not forget us!
Jul 13, 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
I am so sorry she is having such a hard time. Cooper has always been bf and only had a little formula for supplement, but we have had allot of stool issues so I thought I'd tell you what we went through. At first w/ the reflux I decided to avoid dairy and soy as those were reflux triggers, but there is trace in everything, so he was still getting it. He would have so many runny diapers a day. I mean we never changed a just wet diaper. He usually had between 6 and 10 stools a day. Everybody, including the pedi said it was normal bf poop, so it was fine. I knew it wasn't right. It was often very mucosy and frothy. The pedi tested it for blood in the office 2 or 3 times and it was always fine, but i still new something was up. At 4 mo, 10 stools a day is not normal, I don't care if there is blood in them or not. I had asked about mspi multiple times and the dr said we could try Alimentum, but didn't know if it would help and my milk might dry up and I wasn't ready to quit bfing. So finally at around 4mo, i went on the elimination diet. Within a few days, his poop became normal, his stools now firm and never mucosy or frothy. I know he is mspi as well as has other food sensitivities even though the dr never dx him. He does not get any trace of milk or soy at all now, and things are dramatically different. I believe that Alimentum has trace soy and that nutramigen(sp) has casin(sp) in it. Maybe she is super sensitive and she needs a amino based formula. At first, I was using spray oil which had soy lectin in it and it caused issues. I can absolutely tell when I get a hold of something w/ even a little soy in it. Also it can take 10 days to clear their system, but we saw a dramatic difference w/in days. I hope you can get it figured out soon. I know how frustrating it is.
Jul 13, 2008
popz4120
Bryson (3/06), former Neocate, Nexium, and Reglan baby. Diagnosed with peanut allergy and asthma. Weaned from meds in Spring 0f 08. Brother, Parker (6/04), was also on Prevacid and Pregestimil (formula) as an infant.
I can tell you from double experiences with our boys that it can actually take 6 weeks for diahrea to clear up due to MSPI upon changing formulas. Our previous GI doc told us to wait it out, but after 6 weeks of diarrhea with Bryson on Pregestimil we called our pedi to request a GI change. Our new doctor put him on Neocate immediately. Bryson was having explosive diarrhea for 6 weeks to put the point of it shooting across the time at diaper changes. Sorry to gross you out! I would definitely call your GI to make sure that it can take awhile for stools to clear up. We had to take stool sample cards for 6 weeks with our son and by the third week of him being on Pregestimil the blood cleared up. I hope you get things cleared up soon!
Jul 13, 2008
popz4120
Bryson (3/06), former Neocate, Nexium, and Reglan baby. Diagnosed with peanut allergy and asthma. Weaned from meds in Spring 0f 08. Brother, Parker (6/04), was also on Prevacid and Pregestimil (formula) as an infant.
Will your insurance cover Neocate? If so, they may make you try the Nutramigen for a period of time to see if it helps prior to covering the Neocate. I know that our insurance had to be told what all we tried and the results of each prior to covering Neocate.
Jul 13, 2008
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.
Hi Mely. I have no advice but I can tell you that both Nutrimagen and Alimentum have dairy (casein) and Alimentum has trace soy (1.1%) but I am not sure about soy in Nurtimagen. We have to use the liquid form of Alimentum as corn sensitivites run in dh side of family. Have no advice as Katie isn't MSPI but have done a lot of research on formula. I hope you get this figured out soon and you will be in our prayers!
Jul 13, 2008
mely
Amalia 11/1/06, Silent reflux- Weaned off prevacid in the summer- back on again 15mg. Back on lactaid. Atalia- 6/17/08 DX with GERD and colic at 9 days of age. Appears to have mild MSPI. Upper GI. On Prevacid 22.5mg. Successful transition to whole milk! Eats everything!
Pic. Amalia and Atalia having fun at home.
Thank you ladies! Atalia just got approved for Medicaid plus we got WIC here in Florida, so I am very blessed- should be able to egt everything for free. I figure I start out with Alimentum- although ti is so hard to be patient, but if that does not work in two weeks (diarrhea and discomfort)- straight to Neocate. HEr diarrhea is not severe at this time so I would not think it would take that long to clear up, but I will def. ask GI. God Bless and thanks so much again!
Jul 13, 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.
coyle still has loose stools on alimentum unless he eats a lot of solids. it isn't really true "diarrhea" unless it is more than 8 or so in a day. i'd leave her on the alimentum for 2 weeks and see if the arching stops...
Jul 13, 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.
Hi mely. I too would give the alimentum about 2 weeks. That is about how long I did with Nate before going to neocate. I had to pay out of pocket for all our formula but looking back, I would do it all over again. We are done having babies but to be very honest, IF I did have anymore, I would probably just start out on neocate. I am sure the dr's would not promote that tho. I really hope she can gets comfort soon. Please keep us informed as to how you are all doing...thinking of you :)
Jul 14, 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
I'm glad you guys are able to get wic. Here in Texas, you have to trial alot of dif. formulas before getting amino based approved, even with a drs rx. I would call your local wic office and request a form. You might have to get it approved by the state, but then they will cover it. We get wic, but don't get to use it b/c the bf I can't have milk, cheese, eggs ect. But I keep it just in case.
Jul 14, 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. God, I am so sorry you are having these issues with your little Atalia. How horrible. I wish I could offer you advice. Sebastian did OK on Alimentum for a while,b ut then he had diarrhea for 10 straight weeks. It went away almost as soon as we tried Neocate. He never had blood in his poop (of course, he was only tested after he started Neocate), so I'm not sure about that one...

I guess I would suggest just going straight to Neocate and then seeing if the symptoms improve. It certainly won't hurt her (only your wallet) You can always try weaning back to Alimentum (although that brought Bassy's diarrhea back pronto)

Good luck. Please keep us posted!
Jul 14, 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.
Hey Mely, I can't believe you have two girls now!!! How wonderful. I am curious about the reflux thing with both - do you have any allergies on either side? I know now that Eric's reflux is very much related to his food allergies, but I didn't have a clue in the beginning. He is back on Prevacid after almost a year without it. Anyway, he also had problem diarrehea in the beginning - that NO ONE told me was due to a milk allergy. Children's Hospital did tell me to switch him to Nutramagen, which we did for a very long time & THAT problem got a lot better. His crying, however, did not slow up until we put him on Neocate. I only wish I could have spared him all his pain by putting him on that when he started having problems (week two) instead of 17 mths. of age. I hope the formula switch works for your new little one & all the best with her. Ellen
Jul 14, 2008
mely
Amalia 11/1/06, Silent reflux- Weaned off prevacid in the summer- back on again 15mg. Back on lactaid. Atalia- 6/17/08 DX with GERD and colic at 9 days of age. Appears to have mild MSPI. Upper GI. On Prevacid 22.5mg. Successful transition to whole milk! Eats everything!
Pic. Amalia and Atalia having fun at home.
Thanks sooo much ladies for all your input- God Bless.
Check with your
doctor first!