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#601 of 625 Old 10-25-2010, 09:46 PM
 
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Oh, I'm so glad to hear it went better! Looking forward to the details and the timeline for any tests....

Jen, former sys admin and current geek , wife to DH , SAHM and Montessori homeschool teacher to DD "Nugget" (05/07) and new arrival DS "Sprout" (03/31/10)
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#602 of 625 Old 10-25-2010, 10:13 PM
 
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SO glad your appt went so much better this time. That's a lesson for me... not to give up w/ the first appt. but at the same time you don't want to waste time and there's no way to tell a doc will listen/care so much more the next time.

I'm just so glad he's more clued in to little Ellie's issues - at least to the point of wanting to do a scope. How do you feel about that? I never felt comfortable with it but it was never seriously on the table for us. And Neocate "fixed" the issue for the most part. How are you feeling that he was open to talking nursing?

And way to time it, Ellie. Not that the odds are high she'd have a "great" moment at the appt, but the actual in-his-face evidence of her problems must have been helpful for everyone. Poor baby.

blessed Catholic mommy to DD 10/07 and DS 2/09, little one due 8/12!

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#603 of 625 Old 10-25-2010, 11:14 PM - Thread Starter
 
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He almost seemed to be trying to explain his decisions from last appt, this time. I think his bedside manner stinks. But seeing how bad she was hit home w/ him. He was saying things like "don't want to keep medicating just to medicate...." And stuff. He also talked about all the meds she was on having potential negative sides (Eryth on gut health, etc). We brought up things we'd researched. He took the time to discuss them and tell us why he agreed or disagreed and talked through them. DH said...we've heard some kids tolerate certain elemental formulas over others. He said that is true and sent us off w/ Nutramigen AA. He did ask we wait a few days of being off erythromycin to make sure we get cause/effect of each change correct.
As far as nursing...I can tell he'd prefer I let it go. He is not a full on advocate. What he did say is that nursing w/ allergies, esp given my past failures w/ TEDs, introduces many variables. And right now Ellie is miserable and we have to get her to a baseline, first and foremost.so he just said that if I want to keep pumping, and we can get her to a baseline, we can discuss the reintroduction then. (Yeah, he used those words, lol). But he does raise a valid point. He mainly was stuck on that after watching her reflux and seeing how bad it is. His medical concern is that she has esophagitis and messing w/ eliminatin diets and variables that may continue that slide, is not good. So he just wants her stable first. Which I think is fair.

He would like to scope her in the next couple weeks. I'm really nervous about that procedure. DH and I agreed that we'll do a couple days off eryth, take inventory, start the Nutramigen AA, give is a week, take inventory again. If she isn't Substantially better, we'll proceed w/ the endoscopy. If she seems much improved, we'll ask for a couple week delay to revisit.

I don't Love the Dr. I do feel like I now understand his position, he listened to me and explained and discussed. I feel like we're able to get on the same team. He could tell I was so desperately exhausted.

And on a personal note..I put DD2 (be 3yo in 2 wks) on a waitinglist for a preschool program at our local Arts Center. Hoping she could @ age 4. They called today and have an opening for T/TH from just 9:30 till 12pm. I love the program...play based, super crunchy, my oldest went there. I decided, given the chaos @ home w/ Ellie and the lack of attention I feel like I can give everyone, that I'm going to go ahead and try her out 2 mornings a week. She is totally excited and independant and will do great. I feel some relief that she'll get to go have a blast there a few hrs a week. Will be a nice break for her.
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#604 of 625 Old 10-25-2010, 11:29 PM - Thread Starter
 
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Another observation...it was kinda like he had some weird human switch that flipped when he saw he sooo upset. He was examining her and rubbing her head and cooing and singing some song in a language I didn't understand. Was almost endearing.
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#605 of 625 Old 10-26-2010, 12:03 AM
 
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WOW, I'm really glad this appointment went so much better!

I'm glad to hear that he brought up concerns about side effects from the drugs, and not wanting to medicate just to medicate. . It sounds like he wants to get to the bottom of this now. Way, way better!

Dd1 never had a scope - the esophagitis concern sounds legit to me - Most of the people who'd talked about the scopes said they weren't as bad as they thought they'd be, FWIW.

What did he say about the DGE suspicions?

Maybe he just has a standard brush-off approach with the first appointment and then if things persist takes you seriously? I know some Peds refer for any reflux med (weird as that may seem), so if he spends a lot of time just writing scripts for PPIs or Zantac because the Ped wasn't comfortable diagnosing it -- that might explain his dismissive attitude (not that it matters anyway since he's listening now).

ETA: Hurray on the Preschool, I'm sure that will be helpful for your 3 year old! And for you and Ellie, too.

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#606 of 625 Old 10-26-2010, 12:12 AM - Thread Starter
 
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He said he thinks she has some degree of DGE. But that what he would prescribe for that is Erythromycin and smaller more frequent feedings. He also siad that we should quit the shoveling down of large food quantities (as he said last time) since it made her feel bad, and go w/ 2oz every couple hrs.

He said with DGE he would recommend that feeding pattern too.

She was up exactly 1 lb as well. (Note: 12 of the 16 oz came during my BFing)
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#607 of 625 Old 10-26-2010, 03:38 PM
 
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Quote:
Originally Posted by DeChRi View Post
This experience has me left with a massive admiration and respect for parents of children with long term special needs. The chances that Ellie grows out of most of this in the next couple years is high. I can't imagine having a little one that for whatever reason, requires this level of care, around the clock need, etc...with no real breaks.

Mama's and daddy's of special needs kiddos truly have to be some of the most incredibly strong people on the planet.
It's not an exclusive club over in the SN forum -- you don't have to have a confirmed and/or long-term diagnosis to post. I've seen a few threads regarding endoscopy and young children. You can find others' experience with alternative formulas as well. You'd fit right in with your struggles and questions, and they are very accepting and welcoming over there You may find just the support you are looking for.

And I'm thankful that your doctor is finally coming around. ...and that Ellie's gained some weight.

Kim sewmachine.gif mama to DS autismribbon.gifreading.gifblahblah.gif12/2005, Pepper kitty cat.gif, and angel1.gif 10/03, angel1.gif 1/05; homeschool.gif

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#608 of 625 Old 10-29-2010, 01:17 PM
 
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Thinking of you guys.... any improvement?

Jen, former sys admin and current geek , wife to DH , SAHM and Montessori homeschool teacher to DD "Nugget" (05/07) and new arrival DS "Sprout" (03/31/10)
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#609 of 625 Old 10-29-2010, 09:27 PM - Thread Starter
 
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We're good. since stopping the erythromycin her stomach/lower gut pain is gone. For 4 days she has been "normal" with some spells of crappy reflux last an hour or so. Praying this sticks. She is a lovely baby and I feel a stronger bond w/ her being happy/bottle fed vs upset/nursing. Her personality is shining.
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#610 of 625 Old 10-29-2010, 10:01 PM
 
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Good to hear, and I hope things continue to go well! Thanks for keeping us posted!

Not all who wander are lost.
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#611 of 625 Old 10-30-2010, 07:47 AM
 
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Yea!

Jen, former sys admin and current geek , wife to DH , SAHM and Montessori homeschool teacher to DD "Nugget" (05/07) and new arrival DS "Sprout" (03/31/10)
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#612 of 625 Old 10-31-2010, 12:23 AM
 
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Glad to hear the positive update. I've been wondering about you ladies.

Laurie Busy mama to Boo (10/02) DeeDa (10/04) and Belly (10/07) TS 45X
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#613 of 625 Old 11-12-2010, 06:25 PM - Thread Starter
 
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Just popping in to update the last couple weeks. We are currently on a Neocate, Prevacid, Zantac regimine, with Levbid as needed.  She is about 85% better.  She is happy much of the time, but fighting bad reflux, poor poor sleeping, and some gas.  I would just say she is a kinda high needs reflux baby now, but smiles, kicks around, etc.  She is also eating about 3-5oz at a time. She is pudgin up well. :)  This is a doable way to live and the best baseline, by far, we have had.  Her reflux is still pretty "severe" and on Monday we are going to go ahead with the endoscopy.  She is chronically hoarse and the reflux is still bad.  The GI dr says too much reflux meds can cause side effect in babies (headaches, etc) that many Drs dont always think about.   He doesnt want to up any meds, etc without assessing the damage first.  3 weeks ago we quit the erythromycin and sure enough, a few days later she got nailed with NASTY trush.  We tried days and days of probiotics and gentian violet and it didnt even touch it.  She ended up with her entire tongue, cheeks, lips, throat and esophagus covered.  Her "voice" was nearly gone.  We went on Nystatin and 8 days later it was even worse.  FINALLY we switch to Diflucan 3 days ago.  Gave her a dose at 4pm and the next day by 2pm it was nearly gone.  One more dose adn the next day there was not even a white spot.  We gave her two more doses and are done.  We are getting lots of probiotics down her now. 

 

All in all, this is the longest happy baby stretch we have had.  She is starting to play catch up, developmentally, and I think will be fine. I still sometimes find myself analyzing everything...she frequently does this head cocking to the left....she sometimes does this hand shaking thing...and stuff that I would never notice if there was not a history.  But right now, she is within normal in everything, she has a couple chins, she smiles, laughs, is starting to roll over, and our family life is so much better. Things are feeling like we have found a new normal.  Insurance denied our request for coverage for Neocate, despite 3 letters of medical necessity from Drs.  With her increased eating we are spending about $1000 in Neocate, medicine and dr visit copays.  Hoping some appeals with insurance will be accepted, but who knows.  So that is a hit.  She is SO interested in our food, and I feel bad that I can't let her taste some tidbits. 

 

I am pumping just a couple times a day.  I am not sure if I will give that a go again.  I have pumped about 2-3 months worth of "clean" milk since this all started.  When she is a few months older, I may try to get that into her.

 

All in all, life is good, she is significantly more happy, family is functional, and Ellie likes balls, her sisters, and to sleep on my chest. :)  I will update again after the endoscopy.

Kyamo and Juvysen like this.
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#614 of 625 Old 11-12-2010, 06:34 PM
 
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Thanks for the update! Glad to hear things are looking up. :D

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#615 of 625 Old 11-29-2010, 08:04 AM - Thread Starter
 
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And down the road we continue.....

Endoscopy showed she is all healed up and everything looks good.  Now that we have narrowed down somethings, I am trying to make sense of this all.  If anyone here has any brain power left for this, I am happy to hear thoughts. :)

 

So Ellie is 6 months now. The Neocate, Prev and Zantac combo has healed things up and she now no long has excessively bothersome gas and the all day crying.  Now that we have knocked some of that out, there are still bits we are trying to figure out. (Note: Dr is just kind of back to 'sounds like it is under control because her endoscopy looked good and she is gaining weight' opinion).

 

-She still spits excessively, often out her nose, is chronically congested from it, wakes many times gasping from spitting in her sleep, still doesn't sleep laying down and not for any stretch of time.

-She still gets very uncomfortable when she eats more than 3oz.  She WANTS more and will eat more, but then the spit up gets out of control and makes her miserable.

-Dr gave us the all clear to try a rice cereal.  I got Happy Bellies kind so it is clear of any additional ingrediants that "may" bother her.  I gave her a tablespoon of it and she spend the next day or two Significantly more uncomfortable and spitting, crying....was a bad scene.  So do I stay away from solids?  Or try the Happy Bellies oatmeal?

 

She is still far far from normal.  I am just not sure what is normal for a reflux baby and should just be dealt with, and what needs flagged.  My DD2 who was a severe but happy spitter was Never like this. 

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#616 of 625 Old 11-29-2010, 10:03 AM
 
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Honestly, with her I would *not* do rice cereal or any grains for a while.  There is simply no need for them and grains are very hard on digestion.  What about trying a nice bone broth?  Lots of minerals.

 

The sleep stuff sounds an awful lot like sleep apnea which can be caused by enlarged adenoids.  It's possible due to her issues that her adenoids and/or tonsils are enlarged from all the spitting up.  If that is the case, her sleeping will not improve until that situation is cleared up.  the only way to know for sure would be to take her to an ENT who would stick a scope up her nose & look at the adenoids.

 

Not sure about the spitting up or eating things.  Has she ever had any structural work?  Maybe she has something mechanical going on that can be helped by that.


Mom to DMI & Silly Apple
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#617 of 625 Old 02-16-2011, 06:53 AM
 
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OP, how are you guys doing these days?

Co-sleeping is really wonderful when your child actually SLEEPS!! familybed1.gif
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#618 of 625 Old 02-16-2011, 11:39 AM - Thread Starter
 
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Still so very rough.  Still no answers.  She is almost 9 months. We tried and failed now 11 foods.  We have tried several BF-ing attempts, all failed and made her sick.  She has rotated through various meds. No magic bullets.  She is a little happier being mobile...moving and being distracted has been good for her.  Bu the minute she is not distracted, it's really rough.  We are meeting with an OT for a few developmental things, but nothing alarming and all deemed a result of just a rocky start....nothing they think is neuro based or anything.  She wakes every 20 min to 2 hours all night every night.  I'm so tired. Drs have discussed possible eosinophilic disorders so we are consulting with Cincinnati Children's.  Our GI here sucks...said to give her anti-spasmotics and move her to another room to CIO.  This is for sure the most difficult time I have had to cowboy up for.  I feel pretty beaten most of the time.  But we will get there.  She is nice a plump, loves her sisters, and is happiest when moving and shaking.

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#619 of 625 Old 02-16-2011, 11:41 AM - Thread Starter
 
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and thanks for asking.  I feel very alone in this...partly because no one IRL understands the angles like not nursing and the emotional stuff that is so important...or the difficulty in failed TEDs, etc, etc.   I really appreciate the people here that spent so much time and effort  working through this with me.

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#620 of 625 Old 02-16-2011, 11:49 AM
 
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hug2.gif I was hoping the lack of updates was a sign that things had gotten on track, I'm so sorry to hear it's still such a rough road. I was thinking of you last night because my DS had been having problems this weekend & was back to 'normal' again yesterday and I was so relieved. You must be so frustrated (and tired!!!) I don't know what an eosinophilic disorder is -- guess I will look that up!! -- but I hope that maybe that will give you some answers. hug2.gif

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#621 of 625 Old 04-13-2011, 01:21 PM - Thread Starter
 
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After everyone spent so much time helping, for 31 pages, I felt I should come back and let you know we finally have answers.  The short story, is we are dealing with an eosinophilic disorder.  And in the last couple weeks my 3 year old has been diagnosed with the same condition.  Many kids can nurse even with an eosinophilic disorder (like my 3 year old). Some can nurse after mom eliminates some foods.  And in my daughter's case, there is not yet a single food she can tolerate.  She is now almost 11 months.  She lives on Neocate.  She reacts with severe delayed stomach pain and vomiting to everything, including most inactive ingredients in meds, infant vitamins, added DHA to the Neocate, and Elecare (another prescription elemental formula).  Luckily my 3 year old did well on BM and likely didn't go downhill until a year ago when she weaned.  Our hope is that she is not as severe and she will be able to keep some foods in her diet.  We head to Denver in a couple months for a week of meetings with a specialist group there (GI, allergist, immunologist, dietician, psych, etc) and will have a better idea from there.

 

More info is at www.apfed.org.

 

Thanks for all of the help and support on this thread over the months!

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#622 of 625 Old 04-13-2011, 01:45 PM
 
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I'm so sorry that you're dealing with this, but I'm glad you have some answers and a new, fresh starting point. We're suspecting an EID in my 1yo as well. This forum has other parents dealing with the challenges related to feeding problems, etc. that may be able to provide additional support:

http://parent-2-parent.com/forums/forum.php

Mi vida loca: full-time WOHM, frugalista, foodie wannabe, 10+ years of TCOYF 

 

R-E-S-P-E-C-T spells BRAND NEW User Agreement!!

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#623 of 625 Old 04-13-2011, 03:30 PM
 
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Thank you for coming back with an update!  Although I'm sorry your family is going through this, I'm so glad to hear that you have a diagnosis.  Some day when you have time, I'd love to hear how you finally got the medical community to take your LO's problems seriously.


Jen, former sys admin and current geek , wife to DH , SAHM and Montessori homeschool teacher to DD "Nugget" (05/07) and new arrival DS "Sprout" (03/31/10)
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#624 of 625 Old 04-14-2011, 07:28 PM - Thread Starter
 
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Mosaic, thank you for the link.  I hope you find answers for your little one.  It is Such a challenge.
 

Quote:
Originally Posted by jenfl View Post

Thank you for coming back with an update!  Although I'm sorry your family is going through this, I'm so glad to hear that you have a diagnosis.  Some day when you have time, I'd love to hear how you finally got the medical community to take your LO's problems seriously.


Jen, we changed Ped GI drs about 8 weeks ago.  THe new GI Dr suspected an eosinophilic disorder with the baby.  But we could not get food down her long enough to flare the condition without making her really sick, so we could not get an accurate scope.  Eventually she also threw up her hands and said...who knows.  It was kind of a fluke that my 3 year old suddenly started showing symptoms.  Normally this condition takes 3-4 years from first symptom to diagnosis.  But I called our GI, saw her on a THurs, they scoped my 3 yr old on the following Wed, and then called Monday and confirmed the disorder.  This brought us to the conclusion that likely the baby has the same.  The specialist we are talking with agreed.  We will need to get a firm diagnosis with her at some point, but it is tough because we have to feed her long enough to cause a reaction and she goes down hill so fast and takes so long to bounce back. 

 

I really only got the answers when I took control of the situation myself and tried to figure it out. 

 

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#625 of 625 Old 04-25-2011, 08:22 PM
 
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Soo glad you have an answer - hope the meetings with the specialists go well!  Thanks for the update. 

 

I don't know how much time you've spent in Denver, but some of our favorite places to go are:

The Butterfly Pavilion (very fun, and they release the butterflies at 2pm daily I think which is especially cool):  http://www.butterflies.org/

The zoo is nice - there are several indoor buildings if the weather is cold

Denver Museum of Nature & Science

 

If you're there on a weekday, any one of these is unlikely to be crowded. 


Not all who wander are lost.
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