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Sep 10, 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
Cooper update and some ?s
Sorry guys we have not been around. Man was it a rough week last week. My breast is finally healed. Hooray! But, Cooper had an upper respiratory infection and past it to me and dh. He is still very snotty, but seems to be better. I have a left over cough and congestion as does dh. Cooper is also teething, which has been rough. He cut his top left tooth on Sun and is now working on the other one. His sleep has been really off, just when we had gotten used to better nights. He is nursing frequently and is biting me too. Not good considering my recent booby drama. He has his check up with the Pulmo fri and I'm wondering what we should ask. Here is what I was thinking about: At the last appt in May, we discussed weaning off meds at this time. Since then, we had to raise the dose and I am now trying to drop it down, so i don't think I'm ready for him to go off completely yet. We recently forgot it and it was a nightmare. Also, I wanted to ask about a scope. The pulmo is the only specialist Cooper sees, he treats the reflux and has never seen a GI. I think considering the severity of his reflux, the food sensitivities, diarrhea for so many months, that it is probably a good idea for him to be checked out. What do you think. He had a bronch at 5w, but no biopsies, plus he was so young, it was too early for damage to be shown. He still coughs chokes when he drinks out of a bottle or cup, and sometimes when he nurses. I just think he should be checked. What do yall think.
Sep 10, 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
I'd take him to a GI. GI;s are better at dosign out the meds as well.

Has the pulmo asked to have a swallow study done???

Sep 10, 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
He had the swallow study done at around 2mo. It was kind of a nightmare. Everything looked normal other than a little coming up the nose from time to time. He did have milk protein in his lungs at his bronch which is why they did the swallow study, but the pulmo believed that was from the reflux and I agree. The speech therapist who did the study literally pulled Cooper off my breast and said he was aspirating on breastmilk, even though he did not aspirate on the thin barium. She told me not to nurse. The pulmo monitor Coopers o2 a h/r while nursing and felt it was fine to continue, although this was the same appt he suggested a fundo and g tube for high cal night feedings. Anyway, that isn't a huge concern of mine anymore, except w/ cups. Really the only one he takes w/o really choking is the Nuk trainer. He also still uses the slow flow nuk nipple when using a bottle.
It just seems strange to take him to a gi now. I'm mean he is doing so much better, it seems like an after thought, kwim. As far as med dosing, that has been hard. His pedi always dosed high, 30mg prevacid, while the pulmo thought that was much too high and wanted him on 15mg max. That was tough.
Sep 10, 2008
katiesmommy
Tracey, mom to Katie. Diagnosed with reflux at 3 weeks and put on Zantac. At 8 months old she was removed from Zantac as it was giving her migraines, currently on Prevacid. Switched to Elecare since she is not gaining weight; trialing solids after being off for a month. Geneticist said reason she isn't gaining weight is she is stubborn. Upcoming appts.: Neurologist for developmental delay and EGD scheduled for September. She is one funny baby!

Glad your breast is feeling better and hope you all get over the cold soon!

I know Marci-Kids doesn't believe that you can have too high of a Prevacid dose but we increased Katie to 15 mgs split up and it was just too much for her to handle. She is on 11.5 mgs. split now and some days I have to give her mylanta but since she hasn't put on a lot of weight she can't move to the whole tablet.

She was scoped yesterday and we are waiting on the biopsies to be returned but she "looked good" as far as damage goes. She chokes on bottles (medium flow Nuk), sippies, straws and her own saliva at times which is so hard to watch. I would at least meet with a GI to see what they think. I didn't mean to be a post hog just wanted to share some of the ways our lo's are the same.

Sep 10, 2008
nicholas'smom
My thought would be that it wouldn't hurt to go see the GI and see if there's anything he/she can do for you. We did the pulmo 1st too. Had scope and swallow study. DH and I faced similar question as to whether or not to go to the GI. He )the GI) didn't see need for further tests (nor did I), but I am glad we went (and continue to go) as I feel more comfortable having the GI adjust his prevacid as I just feel the GI has more experience with the reflux and reflux meds, so it made me more comfortable. I also feel the GI gave us better info re:starting foods and what to watch for with regards to potential allergies etc. We go to both for now. Good luck. ps Cooper really looks like you in the new pic :) What a cutie!
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.
hey there. coy chokes on formula too, but after 12 months he's never had any aspiration episdoes. my mom said some kids just do that for awhile.. maybe I did so that is why she said that? i wouldnt wean off meds until he starts refluxing less, kwim. mine is not going to be weaned for quite sometime although i have been able to skip a few doses without adverse affects. as far as the scope... i dont know my dear. his weight is really good lately and he could definitely turn a corner soon. i'd say if he's still really bad @ 12-15 mo. then maybe considered. but, jmho, good luck on what you decide
Sep 10, 2008
seamus mama
Seamus was diagnosed with Silent Reflux at 3 weeks. Now he is 14 months, on Prilosec and avoiding dairy,soy,egg. Still nursing. A lot !!!
Im glad your breast is better...Did you do the needle thing? I have been cringing since I read that post! OUCH! The whole thing sounded awful.And then you all were sick! In response to this post, I agree with the otheer ladies..Consult a GI if you can. It couldnt hurt to get a second opinion, especially if you are considering a scope. We are also dropping the meds dose right now and it is a bit nerve wracking. Maybe his gag reflex is really sensitive and the choking isn't reflux?
Sep 10, 2008
seamus mama
Seamus was diagnosed with Silent Reflux at 3 weeks. Now he is 14 months, on Prilosec and avoiding dairy,soy,egg. Still nursing. A lot !!!
Im wondering how your elimination diet is going? Did you ever start eating dairy and if so, what happened?After introducing dairy, Seamus had a reflux surge but he was also teething..so I am thinking about introducing it again. I hope you are able to eat more foods again!
Sep 11, 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
Seamus mama, I never added dairy as I know it and and soy are his biggest triggers. I am still on a very limited diet, but I'm completely used to it now.

I am thinking i will ask about a GI consult. I have before and the pulmo said, i could see a GI, but it wasn't necessary b/c he treats gerd all the time, so it will be interesting. Plus my mil is going w/ me, and I'm sure she thinks I'm crazy and that this is unnecessary now. They think he's fine now, but they live w/ him. Don't get me wrong, he's doing so good, but there are still things I worry about. It will just be a little awkward w/ her going w/ me. we get along fine, but she's not my mom kwim?
Sep 11, 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.... :(
I think the GI would be a good idea (as long as yours is better than ours!!!!). I can't remember if you have seen an allergist. Probably wouldn't hurt, as reflux and food allergies/sensitivities are so closely linked. In our case, his reflux probably never would have gotten to the point it did if I hadn't damaged him right from the getgo by feeding him pretty much all his allergens when I nursed him (Dr. Wood thinks our reflux is food related.) Please let us know what you decide to do...and yay for the happy, healthy boob!!
Check with your
doctor first!