Home › Forums › Infant Reflux Support › Hip, Hip, Hooray! We're having a good day! › We are back in NY…
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April 24, 2006 at 2:46 pm #6707AnonymousInactive
Thais – Wow! Congrats on being back! I’m so sorry, I just noticed this posting, we’ve been so in our little reflux world over here. I’m sure David is thrilled to have you two around again. Would love to get together with you, Karen and hubbies. This weekend (except Sat) is good for us…
On to the update world-We go to Cornell as well! We see Dr. Moon and couldn’t get in with Sokolow (they told us she wasnt accepting patients-you’ll have to tell me how you managed it). Dr. M is so very nice but drives me nuts over the prevacid-she said all the journals, med companies, etc say you can’t raise prevacid dose over 15mg a day-so if her boss is doing it, it makes no sense). Ian is in so much pain and hasn’t been eating for 4 days now-with lots of grunting and bearing down again. I’m so scared for an ulcer and finding him with blood again. She won’t budge-arghh. We also went to the feeding clinic so if you’d like any info at all on what to expect, I’m wide open. My email is [email protected] now.
Also, are you guys still on Neocate or another formula? I think Elecare is alot responsible for these problems. So frustrating-can’t wait to switch. Congrats on the varied food though-so wonderful he’s on solids!!
Tracy (Ian’s Mom 9-26-06) Elecare and Prevacid and no solids (still watery explosive bm’s)
April 24, 2006 at 3:24 pm #6712AnonymousInactiveOh no Tracy – I’m so sorry to hear that Ian is having bad reflux times
again. Thais – do you think there’s any way that you can convince Dr.
Sokolow to take on Ian as a patient?I think this weekend is good for us too! M tends to nap around 9 or
9:30 and again around 2 or 2:30 but maybe something early evening (like
4:30 or 5) would even work for everyone? You let us know, Thais, as I
know your schedule with Matthew must be tough – we can always juggle
things around on our end with M here.April 24, 2006 at 5:04 pm #6718AnonymousInactiveHey Ann Marie! How is Carter doing… i know you posted right after birth. Is he at home already or close to be?? must be so exciting to have him close to you.
Tracy – it took us a while to get into Sockolow. However, we had already managed to get an appointment with her back in November when she was accepting patients and then Dave’s dad is Yale faculty (allergist) and had to pull some strings at Cornell. weird about Moon. Please feel free to tell her next time that you know a patient of Sockolow and that you know that we are on a higher dose of prevacid. Matthew is almost 18pounds and Sockolow said that 15mg was too little for that weight…. i would mention it. Yes, would love to hear about the clinic. Which one did oyu go to?? Maybe we can discuss if we see each other this week or weekend (i think it may rain on sunday so maybe we (wives) and babies can do something during the week. Matthew’s schedule is strange… but hopefully we will get there in a couple of days.
Let’s look at weather forecast – Karen, i know that you are in Gramercy. Tracy, i think you are uptown? We can either meet here at my place or we can maybe go to MAdison Square park and hang out… burgers at shake shack are amazing (i am guessing it is open) and matthew will sleep in his stroller.
April 24, 2006 at 5:08 pm #6720AnonymousInactiveOOOOOOOOOOOh, the Shake Shack ROCKS. So yummy! Yea, M can take a catnap
in her stroller too if need be. She won’t sleep for long in there but
will generally doze if tired enough. During the week is actually
generally better for me but weekend may be doable too.April 24, 2006 at 5:16 pm #6722AnonymousInactiveHi Thais,
I should post an update, but the quick run down is that it will be a few more weeks. He was septic last week and put on SNIP. It is sort of being intubated without the tube, but it does some of the breathing for him. All of that for a UTI. They are treating it, but doing kidney ultrasounds and checking for urinary reflux. Other than that bump, things are going well. Needs some OT, as they put the bottle in his mouth and he just looks confused. No sucking at all, so they are feeding him through the NG tube for now.
Started spitting up (oh joy!) and some fussy periods, so we shall see the ugly reflux monster when we get home. I am calling the GI this week and making an appt for about 3 weeks from now so we can get in as soon as he is home. She will squeeze us in as she got to know us pretty well .
Welcome back again!!!!!!
Oh, and just saw that Dave’s Dad is at Yale. That’s where Carter is in the Nicu. We LOVE Yale…… They have done so well by us through all of our issues with Dylan and now Carter!
Ann Marie
monty1232006-4-24 17:18:10
April 24, 2006 at 5:39 pm #6728AnonymousInactiveKaren – yes, LOVE the burgers. Will have to try this week at some point.
Ann Marie – well, we will know more about tests and let’s share the info. I am glad to know that it seems to be the protocol here and not something that the ped made up…
Don’t know much about Yale. But Dave’s dad is there (allergist) and Dave’s brother is doctor too and eh went to Yale as well so that has helped us a lot in getting some good doctors here. Glad to know that you like them — i am sure Carter is in good hands!
April 24, 2006 at 7:02 pm #6738AnonymousInactiveAnn Marie, sorry to hear about Carter. I just read your update in the other post. I hope that the infection clears up soon.
April 25, 2006 at 7:15 am #6758AnonymousInactiveThat is so funny-we love their burgers too! Yes, we are uptown but we have made trips occasionally just to have them. Sounds like a plan-let me know which day next week-Mondays and Wednesdays, I bring Ian to my office but rest of week is fine.
Thanks Thais-I will mention it to Dr. Moon. Ian’s almost 20 pounds! So fifteen is not enough. He had lost so much weight but last 6 weeks ate 40oz a day so punched up 3 1/2 pounds and 3 inches (no kidding). But he was born big and always was tall (my husband I are both as well). He’s almost 30 inches and looks like a toddler! I’m very jealous you were able to see Sokolow-I’ve heard amazing things but am sooooo glad that you broke through and Matthew’s in good hands.
Oh, and we went to the Patterson feeding clinic-they were super nice and no fluff or judgements. It was all about trying to figure out what your child is trying to say by not eating and they do that through history, behavior, general tests, etc. We were impressed although they also were completely stumped by Ian. I’ll fill you in at our visit since so many details.
Definitely worth a trip since Matthew’s refusals may be something other than reflux? Also, are you still on Neocate btw? Would love to hear a successful transistion story!
Tracy (Ian’s mom) 9-26-05 Elecare and Prevacid
April 25, 2006 at 10:00 am #6777AnonymousInactiveTracy – we are going to go to clinic on the 16th i think. My husband wants to go so trying to fit it into schedule. yes, they told me good things about it. WOW – 30inches, that is so tall! And he is good weight too for that height. Congrats. Matthew is tiny (ie tall and skinny) but the ped said that he looks fine for now but we are increasing his calories slowly.
Yes, we are no longer on Neocate. It never really caused us any problems but given that Matthew was doing really well with his yogurt (he was taking 3 a day until he decided to refuse them totally, we switched to alimentum and a couple of weeks later to regular formula. Funny thing is — we are using spanish formula, one of the nestle ones (they are the best known in europe and have about 10 diffeent ones). We tried to switch to Enfamil (both there and here) and it was a disaster. He would wake up in the middle of the night to pass gas, and was passing painful gas and grunting all day. Weird but that does not happen wiht the spanish formula at all. And it is regular formula, ie not something like goodstart or anything partially digested, but it does have probiotics in it and other stuff, so maybe that is making the difference?
April 27, 2006 at 10:34 am #6980AnonymousInactiveInteresting about the Spanish formula. Did you bring enough back to keep him on it?
BTW – all the Shake Shack talk made me totally crave one. Plus I walked
by there (cut through Mad park on way home from Buy Buy Baby)
yesterday. So DH and I took M in stroller last night and got a double
shack burger and fries each. YUMMY! Felt bad for M though – she was
licking her lips and staring at us… -
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