Author Topic: Update on DS  (Read 2111 times)

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Offline chicagomom

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Update on DS
« on: April 12, 2013, 00:55:04 am »
To Elise and Buntybear and everyone else...thanks for sticking with me this past year with my DS's food problems.  We had a big followup GI appt today and I wanted to keep you updated!

1.  We are starting Prevacid, in part because DS has had some visible reflux episodes which are new, in part because he is always coughing (dry cough), and in part because if we scope him he needs to be on it.  I am really hoping to see some improvement with his cough and I do really think it could be reflux-related.

2. 2-3 weeks after starting Prevacid, we will introduce milk.  we start with 1 tsp, then 3 hours later 1 tbsp, then 3 hours later 2 tbsps, etc. for as long as it is well tolerated.  if DS ends up with an eczema flare-up or diarrhea, he is considered to have failed the reintro and will be booked for an esophageal scope and bowel biopsy.

3.  1 week after starting dairy reintro, if things go well there, we start reintroducing gluten.  same things that apply for dairy apply for gluten, plus the added misery of extreme fussiness (which was his main symptom when eating gluten).

Elise, they do think he could very well have CSID.  They said there are 1-2 other kids in their practice that have it and presented just like DS.  Fingers crossed that we get to the bottom of this before the end of the summer!!!




Offline ENMS

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Re: Update on DS
« Reply #1 on: April 12, 2013, 01:23:56 am »
(((hugs)))

I hope it goes well hon. It will be a stressful few weeks for you!

Just a note, if he has CSID, the Prevacid could be an issue. M had horrible diarrhea on prevacid because it contains sucrose. So just something to keep in mind, if ever he ends up with diarrhea from the intro of Prevacid. He did ok though on Nexium, so all to say if Prevacid doesn't work, ask for a different reflux med it may work better.

If you're not sure about the scope, CSID can now be diagnosed through a genetic blood test done at the University of Washington, or through a Sucraid trial.

Good luck, FX the reintro goes well! :-*
Elise



Offline ZacsMumme

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Re: Update on DS
« Reply #2 on: April 12, 2013, 03:05:47 am »
Hugs! Good luck on the reintro :-*
***Sara***
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DS1 - Our sensitive soul. Silent reflux.

DS2 Our cheeky chipmunk. Reflux, MSPI.

Offline Buntybear

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Re: Update on DS
« Reply #3 on: April 12, 2013, 16:28:04 pm »
FX for the intro, sounds like a bit of a complicated process so I hope it goes as smoothly as possible for you!

Offline chicagomom

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Re: Update on DS
« Reply #4 on: April 12, 2013, 18:13:44 pm »
thanks, ladies, your support is much appreciated!

(((hugs)))

Just a note, if he has CSID, the Prevacid could be an issue. M had horrible diarrhea on prevacid because it contains sucrose. So just something to keep in mind, if ever he ends up with diarrhea from the intro of Prevacid. He did ok though on Nexium, so all to say if Prevacid doesn't work, ask for a different reflux med it may work better.

If you're not sure about the scope, CSID can now be diagnosed through a genetic blood test done at the University of Washington, or through a Sucraid trial.

Good luck, FX the reintro goes well! :-*

thanks for the heads up!  the GI gave him special Prevacid that is milk/soy free (they are capsules that i have to open and mix with pureed food) so hopefully he will be okay on it!

interesting about the CSID test.  i think we will go ahead with the scope and biopsy because we are looking for other issues, including Celiac.



Offline Jimbob

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Re: Update on DS
« Reply #5 on: April 13, 2013, 18:01:55 pm »
I am not sure I would be happy at reintroducing new foods just 1 week apart to be honest. Having said that you and the specialist know how your lo reacts.

I really hope the food trials go well!

Kelly x



James has atopic eczema, multiple food allergies, asthma and late talker

Offline chicagomom

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Re: Update on DS
« Reply #6 on: April 30, 2013, 23:58:54 pm »
Well, we are on day 4 of our milk challenge. DS had 4oz of milk today. So far his stool is normal and he is doing well. Fingers crossed this continues!



Offline ENMS

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Re: Update on DS
« Reply #7 on: May 01, 2013, 00:13:16 am »
Oh yay that is great :)

FX it continues to go well!
Elise



Offline ZacsMumme

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Re: Update on DS
« Reply #8 on: May 01, 2013, 02:01:19 am »
Great update!
***Sara***
https://www.facebook.com/tomiandroo


DS1 - Our sensitive soul. Silent reflux.

DS2 Our cheeky chipmunk. Reflux, MSPI.

Offline Jimbob

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Re: Update on DS
« Reply #9 on: May 01, 2013, 08:43:11 am »
That is great!!! ;D



James has atopic eczema, multiple food allergies, asthma and late talker

Offline chicagomom

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Re: Update on DS
« Reply #10 on: May 01, 2013, 09:58:57 am »
thanks, everyone!  this is from a boy who had 2 days worth of diarrhea after eating one, small gluten free cookie cooked with butter this past December!!!  i am truly amazed.  it feels utterly strange to be giving him milk (it feels like i am poisoning him LOL).  next week, if all continues well, we start gluten.  i don't even know what i will do with myself if DS can eat these foods again!  :)  what a treat that will be.




Offline Buntybear

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Re: Update on DS
« Reply #11 on: May 01, 2013, 21:30:43 pm »
Good Luck!

Offline ENMS

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Re: Update on DS
« Reply #12 on: May 01, 2013, 23:13:13 pm »
i don't even know what i will do with myself if DS can eat these foods again!    what a treat that will be.

Oh hon I can only imagine! I am so happy for you, FX it continues :-*
Elise



Offline chicagomom

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Re: Update on DS
« Reply #13 on: May 06, 2013, 10:50:11 am »
well, after being on gluten for 2 days, DS's eczema patch on his face has flared up (after being gone for 9 months of being GF).  as he was doing well on milk for 9+ days, i think we have the culprit...

have an appt with the GI this week to discuss.  DS has had 2 Celiac blood panels done, each was negative.  i wonder if the GI will want to go ahead with a scope.  she said that while the blood test are really good, she does have 1 or 2 patients a year who have negative Celicac blood tests but positive biopsies.

« Last Edit: May 06, 2013, 10:59:30 am by chicagomom »



Offline ENMS

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Re: Update on DS
« Reply #14 on: May 07, 2013, 00:57:30 am »
It is good that at least you know now... even if gluten is a no-no, if he gets to have dairy then it is that much better than it's been for the last few months!

I just bought a new cookbook, called the Wheat Belly cookbook. Tons of gluten-free recipes! :)
Elise