Author Topic: Back from GI appt. We are dealing with reflux and MSPI.  (Read 3410 times)

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Offline Mydreamcametrue

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Back from GI appt. We are dealing with reflux and MSPI.
« on: November 25, 2008, 19:08:48 pm »
Tyler deft. has reflux seeming how well he has responded to the prevacid.

Also the GI doc is almost certain he cannot have an milk or soy at all.  I been avoiding the obvious, but not hidden.

Also I know for certain that sugar sets him off. 

He was at my sisters house this weekend and she refuses to believe in food allergies/intolerances.  She fed him whatever.  She gave him pizza, waffles, cheese toast and french fries :-0.  She said he did EXCELLENT all weekend, never cried once.

WTF...  So Sunday once he was at home, he was extremely fussy.  Monday I just figured well if he did fine at her house eating whatever, I would give him whatever.  Everyone seems to think I am making a big deal out of it anyway. 

So yesterday I gave him about 3 french fries, cheeseburger, chees toast, he had 2 suckers, a cookie.

Let me just say NEVER EVER AGAIN.  He was super clingy, cried at the drop of a hat, It was really bad.

Also he has gas really bad and his tummy is upset.

So....  We are going full MSP free and also avoiding sugar the best we can.

Oh.. And I tried to wean him back on Nutramigen, which finally he was taking a full bottle of.  The GI doc, said that he does not need that and just to do rice milk.

Of to find all my recipes and notes that I had from Zach.

Wendy -

Zach - 3 1/2 yrs old. My sweet, loving, gentle boy that loves playing in the dirt!

Tyler - 17 months.  My very very spirited little boy.  Can't turn your back for a minute.  He is doing the cutest things now!  Loves to eat and climb!

Offline Alison_3

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Re: Back from GI appt. We are dealing with reflux and MSPI.
« Reply #1 on: November 25, 2008, 19:14:39 pm »
I was wondering how your appointment went.   Poor Tyler.  I hope he's feeling better soon.  Good luck with the recipes.  I know it isn't easy, but as you already know, it's just what you have to do to make your little guy happy (and the rest of the family!). 

Big {{{{hugs}}}} from me.  DH and I were talking the other night that it's amazing how bad things were with DS1, we only remember the good.  Of course we have a few vivid memories of his reflux, but overall we just remember the good and all of the pictures I took tell the same happy story.  It's amazing how the mind works! 





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Offline momtoandrewandthomas

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Re: Back from GI appt. We are dealing with reflux and MSPI.
« Reply #2 on: November 25, 2008, 19:33:13 pm »
Oh Wendy.  We are still in the same boat.  I need to call you.  I just have no uninterrupted time to do so.  Thomas is still suffering from all of the above and we are MS free right now.  I am pulling my hair out.  I am starting to think gluten because there can't be much else.  I have an appt in 2 weeks with his ped and we are going to come up with a plan.  I am trying to ease the wheat out now so I can go GF with her blessing in case his weight does not hold.  I am already under scrutiny for low weight now.  Who knows.  What I do know is there is SOMETHING there and I am going to figure it out eventually.  He is lethargic and crabby all day and sleeps all night with a nap.  :(
Jen - pediatric physical therapist and wife to Brian
Mom to Andrew - 5 1/2 sensitive preemie
           Thomas - 2 1/2 MSPI textbook baby

Kindergarten is stressing me out!!!!

Offline Spectra

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Re: Back from GI appt. We are dealing with reflux and MSPI.
« Reply #3 on: November 25, 2008, 19:35:33 pm »
Poor boy.  I'm glad you finally got some answers and a plan of action.  I can't believe your sister would ignore your ideas like that.  You are going to notice the differences in your child's behaviour and poos more than she ever will.  Hopefully she will respect your wishes from now on.  Glad to see you are all doing better.
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Offline Vicku

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Re: Back from GI appt. We are dealing with reflux and MSPI.
« Reply #4 on: November 25, 2008, 21:40:08 pm »
Hugs Wendy!!
I'm glad you've got a plan and hope it will work well for you. Will keep up with your progress :-*
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Offline Mydreamcametrue

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Re: Back from GI appt. We are dealing with reflux and MSPI.
« Reply #5 on: November 26, 2008, 04:50:27 am »
Hey Jen, didn't they take biopsies when they did his scope?  They should have tested for celiac disease..

PM later and we can talk about it.

So...  Tyler poor thing woke up this afternoon covered in all liquid poop.  It was all over his crib :(  His butt looks awful now. 

My sister of course does not understand because she said he never cried once while there.  So apparently Tyler has a delayed reaction to milk. 

I found a great website with tons of recipes if interested.

http://mspimama.blogspot.com
Wendy -

Zach - 3 1/2 yrs old. My sweet, loving, gentle boy that loves playing in the dirt!

Tyler - 17 months.  My very very spirited little boy.  Can't turn your back for a minute.  He is doing the cutest things now!  Loves to eat and climb!

Offline Spectra

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Re: Back from GI appt. We are dealing with reflux and MSPI.
« Reply #6 on: November 26, 2008, 18:41:31 pm »
:O
Poor baby!  I feel so bad for him and your family.  I hope things get better soon, poor guy.
Melanie
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Offline Jimbob

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Re: Back from GI appt. We are dealing with reflux and MSPI.
« Reply #7 on: November 26, 2008, 20:23:01 pm »
Hugs Wendy, its awful when family does not understand and go against you. I don't think they understand what harm they are doing. I hope Tyler is feeling better soon.

Kelly



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

Offline Mydreamcametrue

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Re: Back from GI appt. We are dealing with reflux and MSPI.
« Reply #8 on: November 27, 2008, 05:28:32 am »
Well so far today he is feeling lots better!!!  No diaherra and was pretty happy all day. 

He had homemade safe french toast with Pure Maple syrup, grapes and sausage for breakfast.

Lunch - Heat at a safe hotdog and Ritz crackers

Snack - Was an apple (he likes to hold the entire apple and eat it like a big boy)

Dinner - He ate speghetti with Prego Sauce.  Dessert was 2 Newman's Own Cookie's

3 bottles of rice milk and juice/water!!! 

I was going to avoid all sugar also, but the GI doctor really did not think sugar would have that big of an effect on him as I was describing.  He felt it was something else, so I assume the milk or things with milk.

I am still avoiding as much sugar as possible though and sub. for honey, agave nectar, pure fructose, etc.

Call me crazy, but his skin is already looking better..
Wendy -

Zach - 3 1/2 yrs old. My sweet, loving, gentle boy that loves playing in the dirt!

Tyler - 17 months.  My very very spirited little boy.  Can't turn your back for a minute.  He is doing the cutest things now!  Loves to eat and climb!

Offline donna_issabella

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Re: Back from GI appt. We are dealing with reflux and MSPI.
« Reply #9 on: November 27, 2008, 05:34:01 am »
HUGS Wendy.

UGH Got to love family. I really detest when my family poo-poos H's MPI. The irony is my sister's son has the same, but they are more relaxed and don't seem to mind him waking up frequently at night after having milk. He also gets a terrible rash. I prefer H to be happy and not whine and seem to be in pain. But I hate how they kind of roll their eyes and go Yeah Yeah.

I am glad that Tyler has become happy and you are enjoying him. :D Long may the recovery continue and last!!! :D

xx
DI

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Re: Back from GI appt. We are dealing with reflux and MSPI.
« Reply #10 on: November 27, 2008, 14:23:07 pm »
Yay!  So happy he's doing better.
Melanie
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Offline Alison_3

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Re: Back from GI appt. We are dealing with reflux and MSPI.
« Reply #11 on: November 27, 2008, 15:05:37 pm »
Fantastic news.  Have I told you lately that you're a terrific mom?  Your boys are lucky to have you!
 :-*




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Offline deb

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Re: Back from GI appt. We are dealing with reflux and MSPI.
« Reply #12 on: November 27, 2008, 15:25:32 pm »
If there's a history of antibiotics and at any time he had a yeast overgrowth in the gut, leaky gut may well be part of the food problem as well. For Josie we had to cut out ALL sugar, including fruit, juice, agave, even dairy (which you're cutting out anyway), and most grains, to kill the yeast in her system; we stuck with that diet for about 2 months before adding things back in. I'm fairly sure that by now it's a problem again, but as long as we keep the diet strictly under control, we see FAR fewer problems behaviorally and digestively than we ever used to.

Leaky gut would come from the yeast overgrowth and would actually allow undigested protein molecules, like casein and gluten, to pass right into the bloodstream, triggering allergic reactions to them. And the yeast, when they're fed, produce carbon dioxide, resulting in nasty gas and diarrhea, often within a short time after the food is eaten, plus the other chemicals yeast produce can mess with blood chemistry, which in turn messes with brain chemistry and can cause behavior things.

The program we followed was the Body Ecology Diet, and while it's REALLY REALLY strict, I also found that I lost 30 pounds of stubborn baby fat while we ate that way AND nobody in the house got even remotely sick for three months in the Winter, even with a kid in preschool (aka "germ factory"). Googling "Body Ecology Diet" should give you some info about it, or you can just go to http://www.bodyecologydiet.com for more info.

You can also ask about Grapefruit Seed Extract, which I've even seen advised for nursing moms with thrush; it kills the systemic yeast in the system. I make Josie "juice" drinks by putting either some lemon juice or plain unsweetened cranberry juice in the bottom of a bottle or pitcher, adding some GSE, sweetening with stevia (herbal sweetener, does not feed yeast), and topping off with water to make "lemonade" (or "cranberry-ade" LOL). She'll drink a good half-gallon of that a day if I let her, although I do encourage water more often, maybe alternate a juice drink with a water drink.

Anyway, I didn't know if any of that might raise a red flag or ring a bell for you, so wanted to put that out there as another possibility.

Offline Mydreamcametrue

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Re: Back from GI appt. We are dealing with reflux and MSPI.
« Reply #13 on: November 28, 2008, 00:17:06 am »
ALISON - I am tears.. You have NO IDEA how much I needed that at this very moment.  Today has been one of the worse days of my life and Zach even told me tonight he did not like me anymore and wanted to go live with grandma :(  Also hubby is not being supportive at all.  So THANK YOU from the bottom of my heart. 

Deb:  YES, all that does ring a bell.  I actually should do this my self because I have been having lots of these problems.  Tyler has had thrush and yeast infections.  I myself have had 10 yeast infections in ummmm 12 months :-0  YEAH.... Major major problem.  I have a book called "Candida Yeast Overgrowth" or something like that. 

I will check out this link for sure.

So... today another pretty good day for Tyler.  His face is actually feeling so smooth, but DH really got on me this morning and just said we should live like normal people.  That really started the day off really bad.  He does not get it.  I am the one who has researched, gone to the doctor's, taken the time to know what works for my child.  NOT HIM.... 
So anyhow Tyler had a good day, I had the worst day of my life to be honest...  :( 
Wendy -

Zach - 3 1/2 yrs old. My sweet, loving, gentle boy that loves playing in the dirt!

Tyler - 17 months.  My very very spirited little boy.  Can't turn your back for a minute.  He is doing the cutest things now!  Loves to eat and climb!

Offline Vicku

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Re: Back from GI appt. We are dealing with reflux and MSPI.
« Reply #14 on: December 03, 2008, 20:40:44 pm »
Jusy thought of you and had to come see if there were another update... How are you today Wendy?

I hope things are going well, and I know how hard it can be when DH is unsupportive :(
Big huge hugs to you!!! :-* :-* :-*
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