Barium Enema Study Scheduled

[Anonymous]

Ok, I scolded my husband for telling me Barium is radioactive but he explained it that it’s actually because the testing is radiation not the barium-so I misunderstood. Many apologies-the last thing I want to do is post misinformation on this board.

Also, Karen, I hope you don’t in any way think I’m not behind you. Like I said, I may be doing some testing myself v. soon and am only sending you supportive and warm thoughts. Big squeeze to Marisa-brave little girl!

Tracy

[Anonymous]

Thanks Tracy – I know that! How is Ian feeling?

Thanks also, Laurie – I agree and hope it goes well too.

It’s just so odd – it all seems to be related to her eating and pooping
– she has always hated to sit/bend and hated to sit in swing or bouncer
or anything. She’ll sit in her booster seat but only if REALLY
distracted with toys or TV or something. Yet she’ll happily go in
jumperoo or lay on floor (back or tummy) to play. She did have an
umbilical hernia when born and has always had an issue wearing pants or
anything around her belly too. Yet her reflux seems OK – not crying at
all when spitting up, not arching when eating, etc. Yet she’s been
really whiny lately and had more screaming attacks than in some time.
And constantly sucking thumb for comfort… Argh

[Anonymous]

Poor Marisa! I hope that she can get some relief soon.

[Anonymous]

Well Ian’s pretty much the same. Happy as usual (and the vomiting went away since Sunday when he had two big poops). But although he was eating well on Sunday night, Monday, Tuesday…it then started to go downhill again because of no bm’s. Still hasn’t had one and we’re back down to 2oz a feeding. He’s doing the not bending and gas pain movements while eating and sleeping and woke up in middle of night. Only difference from Marisa is that he will eat in bouncy chair and his poops are always soft. However, concerns us that what used to be 2 days between, became 3 days, and now were going into a 4 day period. I’m beyond happy to see new GI tomorrow and am just praying someone will take me seriously. Ian reacts to prune juice and although not so much with pear, he hates the taste.

So, hopefully, both of us can get some answers tomorrow! Let’s cross our fingers.

Tracy

[Anonymous]

Well I’m glad that Ian is happy. Marisa actually went twice today (well
the second was only half hour later so likely just continuation of
first) and it wasn’t as soft as when on Miralax and still a lot of
straining but not hard either. And she definitely seems much relieved
after she goes – it just doesn’t last long. So as much as we’re
dreading tomorrow in terms of how upset we know it will make her, we’re
very glad to get some answers and hopefully it won’t be anything
serious.

I’m glad as well that you’re seeing new GI tomorrow – definitely let us
know what he says – and email me whenever! We still have to try to find
a day/time to meet up and the little ones can play..

And thanks Lori – I hope so too! How are you and Hailey doing?

knb182006-2-9 13:4:27

[Anonymous]

In a strange update, Marisa has now pooped three (!) times today. All
pretty normal. And she hasn’t had the Miralax since Monday morning. So
now I’m waiting to hear back from the doctor as to whether they still
want to do this test tomorrow or instead to wait until next week and
see if her normal bowel movements continue. Very odd…

[Anonymous]

Hi Karen-

Did you go? Everything ok?

Just checking in. Our GI appt. was a HUGE waste of time-do not go to Cornell.

Tracy

[Anonymous]

Hi Tracy – was just thinking about you.

What happened at the appt? Why was it a waste of time? Give me details…

We did not go – they think it’s possible that her bowels were just so
clogged from the months of rice (even though we stopped that like 6
weeks ago) that it took the Miralax treatment to clean her out. And she
does seem much better yesterday and today. We have our 6-month visit
with Ped one week from today and she may put her on
acidophilus/probiotics then to help her digestive system out – but she
wants one week of Alimentum only now to see how she is after all the
“cleaning out”.

[Anonymous]

Great news! Hopefully that will do the trick. Did she go again today? How are her eating habits doing? How about the Alimentum-rash is gone, I hope?

Doctor was (in my humble opinion)-condescending without merit! Dr. S may be arrogant, but at least he could back it up. This doctor just kept saying-it must be fine for him/try prune juice/he looks so happy so he must be fine/you’re just going to have to live with giving him 1-2 oz every hour or two/etc. Then (and here’s the real kicker), I say to him-“What is your opinion about the prevacid? Since Ian’s never really cries during spit up when we took him off, etc and it hasn’t helped his eating…?” And he says “I really think you should be on a compounded version-it’ll stay good in your fridge for a month and it’ll be easier to give to him.” WHAT??!! I then of course went to town on him because I a-live on the UPWS and it was a hassle to get there b-what the heck did that have to do with anything anyways! Sigh. I felt like I was teaching him. My biggest concern is Hirschburg’s and to his credit, he went over why it wouldn’t be that (although I’m not sure I trust anything he says). After all my frustration with him, I went into their waiting room and started to feed Ian. I proceeded to see my son (yet again) starving and trying to eat, but after 1 oz, grunt, pull legs up, pass hard gas, and give up. He only ate 1.5oz and was clearly upset and whining. That only aggravated me more. Ian did have a bm last night but that was after 5 days and challenging feedings. He did gain 5oz in 10days, but frankly that’s way down for Ian. The doctor also showed me his computer and said ‘look, he’s gaining fine. It can’t be that serious.’ So I then said “I appreciate your charts and graphs, however, you don’t see what we have to do at home to get that down him. Also, let’s not forget he was on rice for 2 months.’ ARGHHH! I’ll calm down now.

Feel lost. Have another GI appt. March 3rd at Mt. Sinai-hopefully they’ll take me more seriously. I do need to say this though-I am very encouraged that my son IS so happy most of the time (except for eating). And we’re enjoying him so much and the love is unbelievable.

Tracy

[Anonymous]

Karen, I am glad that Marisa didn’t have to go through the enema thing. I hope she is feeling all better now!

Tracy, I am sorry that you got a not so good dr. Hopefully your next dr will be better!

[Anonymous]

She did not go again yet today but has passed a TON of gas and that
seems to be enough for now. Eating habits mixed – first bottle today OK
(normal big break but not bad). Second bottle tough but then downed
third bottle – so who knows? Rash comes and goes but is actually worse
when she gets up in morning and after naps so thinking may be related
to detergent or something? Nowhere else on body – just on forehead and
sometimes a bit on nose – but she’s also always rubbing those areas…

I’m sorry to hear the doctor was so arrogant. It seems to be a thing with these NYC gastro specialists, huh?

As for Hirschsprung’s, did Ian pass the meconium within his first 24-28
hours? That is generally the biggest sign – however, my Ped said it is
still POSSIBLE even if the child did. What did this guy say?

Speaking of BMs, is there a night/day difference in Ian and his eating
once he does go? Did he go more often on Nutramigen? I’ve found that
Neocate/Elecare can be very binding and even keep from passing as much
gas. So Marisa was getting just as gassy on Neocate but unable to pass
it – which was a big problem. Does Ian take water? Maybe you can give
him a few ounces of water a day to help him get more regular?

Who are you seeing at Mt. Sinai?

Glad to hear he is so happy though and that you all are having fun. We feel the same way here!

[Anonymous]

Thanks also Sarah! Hope you and Isaac are well.

[Anonymous]

He did say that about Hirschsprungs and Ian did pass it in hospital, however, he was jaundice a few days after birth (we have different blood types) and didn’t have a bm for first 4 days home. Then when he finally went-it was a little more meconium. However, this gi and our reg ped says this is normal because the bulk was passed in hospital.

We were noticing a difference with Ian’s eating and having bm but now that the bm over last few weeks have been even more infrequent it doesn’t seem to help anymore. 5 days without one this week and that’s a long time. And, it was watery yesterday. But not eating today. And, yes, he’s been this way since birth with a bm every 2-(now)5 days. Never regular no matter breast milk, reg formula, nutramagin… I don’t know that I think Elecare is as binding as Neocate because you don’t make it to volume. You actually have to drink 6oz of liquid to get 5oz of nutrition-it’s another frustrating point for us as he’s not eating. And he’s always been gassy-especially now. Just fed him now and after two oz he kept attacking the bottle and then pulling away again frustrated, uncomfortable and wriggly/gassy. Put him in bouncey chair and he sucked it down relieved. Now I’m thinking-is it reflux? But he’s on a high dose of prevacid and he’s not arching and spit up doesn’t bother him. Perhaps acid in stomach? I’m clueless. He ate so well for the first 2 weeks on ST-then 2 weeks down. Now, I’m glad he’s off ST but worried.

Yes, have to enjoy the smiles. It’s the best encouragement we have that all’s going to be fine.

Tracy

[Anonymous]

Maybe he needs a good cleaning out too – especially after all the rice?
Would your Ped prescribe Miralax for a short term? Strange re bouncy
chair – but wouldn’t think that would matter if it were reflux. I mean
– you can hold him at same angle…

Interestingly enough, Marisa was also a bit jaundiced a few days later – but didn’t need treatment and cleared on own.

Yes – DH and I always say that – we can have such a rough day and a few smiles and laughs make it disappear…

[Anonymous]

Karen, glad to hear that she went on her own and didn’t need the enema. BTW, Hailey was also jaundiced and needed her bilirubin done outside of the hospital to make sure, but actually it is very common for them to have some jaundice after birth, especially if BF until colostrum starts.

Tracy, so sorry that you had to waste your time with yet another arrogant doc. It’s so frustrating. I hope that you get answers soon.

[Author]

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