Author Topic: DD (3 yrs) has been referred for endoscopy  (Read 2137 times)

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Offline rinajack

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DD (3 yrs) has been referred for endoscopy
« on: March 17, 2009, 12:07:02 pm »
Hi guys

Zara as a baby had a bit of reflux (not treated with medication) that improved when we eventually (at about 5-6mo) put her on soy formula. It also stopped her stools from smelling so badly.  She was even smelly as a BF newborn  ;D :-[.

When she was nearing 1 yr old, we put her back on dairy (had tried previously unsuccessfully) and it seemed to go fine.  By about 18mo, I had noticed quite a significant drop in her appetite, which I assumed was a stage, or teething etc.  Everyone told me that she would eat when she was hungry.

She had quite poor weight gain, and dropped through the charts from the 75th percentile at 8mo, to now around the 10th.  I think she was very chubby at the 75th, but that the 50th was probably about average for her.

At 2.5 yr old, she started telling us that her tummy hurt, that she felt sick.  It was completely random in its timing, but was frequent (anything from 1-10x per day). Her appetite at that time was appalling. The paed did blood tests but found nothing conclusive.  Her stools and blood tests showed evidence of inflammation (presence in the stools indicates gut inflammation).  Ultrasound confirmed the same, but nothing conclusive.

Over 4 consecutive monthly paed visits, Zara lost weight - at every single appt!

In Dec last year we removed all dairy (including trace dairy) from Zara's diet after I realised that her tummy complaints increased after giving her pediasure, which contains diary (ie after increasing her dairy intake). Over a couple of weeks we saw dramatic improvement.  Her appetite improved, her mood improved out of sight, as did her focus and concentration, ability to amuse herself etc.

Then, a couple weeks ago, she started complaining again about the tummy pains, and her appetite is down to about 1/4-1/3 of what it was while she was feeling good. She is irritable, tired, can't focus.  The only change to her diet that I can think of around this time was that I was doing lots of baking for hte kids - using soy substitutes - and lots of flour.

Paed has referred her to a GI paed for an endoscopy.  Paed is not ruling out coeliac, although the blood test was negative, but that is not 100% accurate.

What can I expect?  What do I need to know?  What do I need to ask? Is there anything else in Zara I should be looking out for? Can anyone offer me any reassurance at all?

Zara is absolutely petrified of Dr's, needles etc.  She is incredibly sensitive, prone to bad dreams, has a way overactive imagination etc.  This is going to be a massive massive deal to her, she will find it incredibly stressful - as I am sure most kids would, but she is a sensitive spirited, so her reaction to this is going to be huge, and hte impact probably felt for many months.  I want to make sure I am helping her in the best way by getting this done....

Dh is not entirely supportive, he wants her to "toughen up".
Rina - Mum to Zara 29/3/06
                     Hugh 26/8/07
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Offline Mum to Ella Rose

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Re: DD (3 yrs) has been referred for endoscopy
« Reply #1 on: March 17, 2009, 23:47:28 pm »
Hi Rina,

BOth my kids were scoped. Ella at 3 and Alex around 6 months.  They wouldn't let us in the room with Alex, but with Ella they were wonderful.  Prior they put a numbing patch on her hand. When we went into the OR,  one doc blew bubbles with her while she sat on the table and faced me. The other doc and nurse had her hand behind her back. Ella was too busy blowing bubbles. When she realised they were putting a needle in she was already going under. The doc counted, they said "lay her down now mum" and she was asleep. She woke fine (as did A) she got a popsicle and he got apple juice. (yes that young lol) but they were both intubated due to the reflux so they thought maybe a sore throat. Ella did have some issues after from the anaesthetic, but that is more than likely due to her other issues.

We are two hours one way from the hospital. As fasting is required, we decided to stay at a hotel the night prior (with ELla) and we made it a kind of family night. Went swimming etc. Maybe not an option, but we try and make our trips to the hospital somewhat fun too so it's not just the "scary" stuff that's remembered. (Ella now asks when she can have more tests lol)

I would recommend bringing slippers and a robe... favourite blanket or lovie. Soft cool foods for after...

As far as what to look for, celiac is only 100% through the biopsy so that's good. They can see any inflammation from reflux and/or other damage.  I would also ask if they are checking for (I would think so given her history) EE. eosinophilic esophagitis.  They can tell if it's from reflux or other.. here's a link.

http://www.chop.edu/consumer/jsp/division/generic.jsp?id=77065

must run, my darling baby boy seems to think I should be playing with him or something... lol. {{hugs}} and please let me know if I can help anymore...
~Sharon~  proud Mummy to

Ella Rose November 20, 2004
Alexander James March 19, 2008

Offline rinajack

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Re: DD (3 yrs) has been referred for endoscopy
« Reply #2 on: March 18, 2009, 08:07:04 am »
Thankyou.  Zara doesn't like new people, I find it very unlikely that she will allow any medical staff to play with her.  She is unlikely to even let them touch her without becoming quite anxious. She screams any time I have to first aid her, and is very reluctant to let any dr or nurse hear her.  It has been almost 6 months since she has had a needle of any kind, and she is even reluctant to let the play syringe from her dr dressup set be used on her (it couldn't possibly be any blunter).

I had already thought to bring her lovie, and will request to be allowed to stay with her most definitely.  The hospital we have to go to, to get this done, is 7 hours drive for us.  Her initial consult with teh paed GI is the day before the scope, and we are thinking about staying for several days after that also, so we will definitely be doing some fun activities!

Re EE - I don't know, it could be, our paed doesn't think it is reflux related, but you never know.

Thanks for the info.  We are booked in for 3 weeks from tomorrow (Thursday).
Rina - Mum to Zara 29/3/06
                     Hugh 26/8/07
                     Bree 31/5/10

Offline Mum to Ella Rose

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Re: DD (3 yrs) has been referred for endoscopy
« Reply #3 on: March 18, 2009, 14:45:43 pm »
{{hugs}}  Def talk with the doc about her fears... maybe they have some way to help with it. I'll be thinking of you! xx
~Sharon~  proud Mummy to

Ella Rose November 20, 2004
Alexander James March 19, 2008

scarlettsmom

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Re: DD (3 yrs) has been referred for endoscopy
« Reply #4 on: March 20, 2009, 03:32:03 am »
Just following along - my 7month old sweetie may need one as well - multiple allergies and some GI issues.

Sharon - just wondering if you could elaborate on the fasting.  How do you do that w/an infant??  That's really stressing me out.  DD2 is still up 1-2x a night and I just don't know how that would work....I guess you just have to deal with it?  Or is it a short fast? (I have an appnt. w/our GI on the 25th but looking for IRL examples in the meantime!) :)

(Rinajack - hope you don't mind me jumping on your thread and asking some questions)

Offline Mum to Ella Rose

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Re: DD (3 yrs) has been referred for endoscopy
« Reply #5 on: March 20, 2009, 03:52:57 am »
Honestly... we just went with it... when Ella had it done, she wasn't really eating anyways so it didnt' matter. With Ali... well we thought it would be worse! I fed him in the middle of the night at the last possible moment and as much as he wanted. He was cranky on the long drive but once we got to the hospital he was so distracted by everything it went way better than we could have hoped. Oh and time... I believe it was about 6 hours he had to fast?? yes.. if I remember right he couldn't have anything after 2 and he was scheduled to be in the day surgery at 8. :)
~Sharon~  proud Mummy to

Ella Rose November 20, 2004
Alexander James March 19, 2008

Offline rinajack

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Re: DD (3 yrs) has been referred for endoscopy
« Reply #6 on: March 20, 2009, 04:53:23 am »
We have had do to the fasting with Zara before.  Like Ella, Zara was barely eating at the time, so not much of an issue.  She is eating a bit better now than she was then, but I still don't think it will take much to hold her off for eating.

For an infant, you just have to ride it out, I guess. Hard I am sure. But easier knowing you only have to do it that one night, easier than sleep training for sure!
Rina - Mum to Zara 29/3/06
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Offline Deb_in_oz

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Re: DD (3 yrs) has been referred for endoscopy
« Reply #7 on: March 20, 2009, 06:11:46 am »
just saw this rina and wanted to give you lots of hugs. i know how stressed you are right now so am here anytime you need to vent. 
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Offline rinajack

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Re: DD (3 yrs) has been referred for endoscopy
« Reply #8 on: March 20, 2009, 11:36:41 am »
Thankyou Deb.  Muahxx
Rina - Mum to Zara 29/3/06
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Offline jennyh

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Re: DD (3 yrs) has been referred for endoscopy
« Reply #9 on: March 20, 2009, 21:54:49 pm »
hope things go well.xxxxx
children are precious,cherish the moments....
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Offline Alison_3

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Re: DD (3 yrs) has been referred for endoscopy
« Reply #10 on: March 20, 2009, 22:55:35 pm »
Both of my boys were scoped (Charlie twice).  They were much younger than Zara and I can totally understand her fear of doctors.  Charlie is 2 and cries as soon as we pull in the parking lot to the pediatrician, ENT, GI specialist, etc.   It's so heartbreaking.   :'(  Can't imagine what it is like for a 4 year old. 

IMO, the scope is the way to go.  At least this way you'll get definitive answers and be able to help her. 

Please keep me posted.
 :-*





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Offline Spectra

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Re: DD (3 yrs) has been referred for endoscopy
« Reply #11 on: March 21, 2009, 01:24:55 am »
Oh wow Rina.  I don't know much about these, but I hope things go well too.  Hugs.
Melanie
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Offline rinajack

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Re: DD (3 yrs) has been referred for endoscopy
« Reply #12 on: March 21, 2009, 07:25:01 am »
Thanks everyone.  Just waiting for the date now.

Incidentally, her diet the last few days has had very little wheat and no dairy in it.  She has hardly complained about her tummy at all.  We haven't taken the wheat out deliberately, but she hasn't been eating much and has only wanted fruit....so I am pretty sure wheat is a factor.

Is it cruel to be sure to give her wheat in the days leading up to the scope, to be sure that they can see what irritation (if any) it is causing?
Rina - Mum to Zara 29/3/06
                     Hugh 26/8/07
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scarlettsmom

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Re: DD (3 yrs) has been referred for endoscopy
« Reply #13 on: March 22, 2009, 03:04:46 am »
Thanks Rina and Sharon.   :-*

Good luck Rina, I'm sorry you have to deal with this.  Good news though that you've seen an improvement w/cutting down on wheat and dairy.  I think if your date is in the next couple of weeks any irritation of the gut will still be present so no need to add possible irratants to her diet - but I know what you mean.  Maybe ask her dr - s/he may suggest very small amounts?  I have known SO many people who have removed dairy and wheat and have seen amazing results with their kids.  I wish the best for you and your little girl!

-ts

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Re: DD (3 yrs) has been referred for endoscopy
« Reply #14 on: March 22, 2009, 05:05:46 am »
I was actually instructed not to cut wheat before the scope - so maybe I do need to make sure she eats it in the days leading up...as I said, the last few days of littlr wheat were not deliberate...
Rina - Mum to Zara 29/3/06
                     Hugh 26/8/07
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tuta

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Re: DD (3 yrs) has been referred for endoscopy
« Reply #15 on: March 22, 2009, 09:20:10 am »
Rina :-* I have never had one but I want to send Zara (and you) hugs for a smooth and low stress procedure

Offline rinajack

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Re: DD (3 yrs) has been referred for endoscopy
« Reply #16 on: March 22, 2009, 09:56:57 am »
Thankyou.
Rina - Mum to Zara 29/3/06
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Offline motherof3

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Re: DD (3 yrs) has been referred for endoscopy
« Reply #17 on: March 27, 2009, 13:33:21 pm »
Sending to you and Zara! So sorry to hear that her belly is hurting.  I hope that they find out what is causing the pain.

Andrea
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Offline rinajack

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Re: DD (3 yrs) has been referred for endoscopy
« Reply #18 on: March 27, 2009, 21:13:22 pm »
Thanks Andrea (haven't seen you around for ages - Waving!)

Tomorrow is Zara's birthday party, I have been baking up a storm.  The kids have been eating a bit of this batter and a bit of that batter.  All of the baking has been dairy free, using soy subsitutes.  And last night she had terrible tummy pains, rolling around, crying quite hard etc.  I had to sit with her in my arms and she let me put a heat pack on there until she was feeling a bit better.

I really do think there is some issue with wheat, even if it isn't celiac. Sigh - almost wish the endoscopy was today, since it was hurting so much last night that if there was something for the dr's to see, they would surely see it today!
Rina - Mum to Zara 29/3/06
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Offline motherof3

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Re: DD (3 yrs) has been referred for endoscopy
« Reply #19 on: March 27, 2009, 23:19:00 pm »
Rina Hi! (waving back :))

Do you think it could be the soy also?  A lot of kiddos can't do dairy or soy.  Humm but I think you said that she was on soy formula.  Poor dear.  When is her endoscopy?

Andrea
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Re: DD (3 yrs) has been referred for endoscopy
« Reply #20 on: March 28, 2009, 00:50:07 am »
It could be the soy - but she was really great for a couple of months, and during that time was drinking plenty of soy milk.....this seems to happen worst when I bake lots, which means more wheat AND more soy....I really just don't know.

And she was fine on soy formula as a baby....
Rina - Mum to Zara 29/3/06
                     Hugh 26/8/07
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