Author Topic: Totally confused!!! Please help!  (Read 1679 times)

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Offline Newby1

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Totally confused!!! Please help!
« on: March 14, 2011, 11:07:22 am »
Hello All,

First I must apologise for my bad typing. I am using a German keypad and its very hard to write!!!  :P

So I am just wandering if anyone can help my LO Oskar. He is 19 months and has a few problems.

First I will give you a brief history:

GERD

He has Severe GERD, Medicated with 20mg Losac.

MPI

Tested but results came back clear, once injested he gets rashes, vomitting and swelling of the face.

Surgery

He has had surgery for a birth defect. He was born with the wall in his abdomin missing and his intestines dropped into his testicles.

Severe Food Avasions

he is also scared of food, although it is getting better!  ;D But he still drinks from bottles with number 2 teat (from 3 months) and suffers from chocking.

LOW IGA

he also has low iga which he really suffers from. he gets frequent viral infections as well as gastro and ear. In the last 3 weeks for example he has had 4 different types. Right now he has ear and Viral infection with a very painfull stomach.
Sleep Issues

his sleep is really bad still. he can only go a few hours without reflxing, sometimes he will only wake 2 or 3 times but this is rare. in recent weeks he has been waking frequently or not going to bed until 2 or 3am as he is to unconfortable.



SO

Today we went to see the ped and he was diagnosed with Fructose malsorption. We have to follow a ED to check this is the case.

I was just looking for some advice r.e ED and also LOW IGA.

Thanks so much!!!  ;D

Charlotte
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Offline Newby1

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Re: Totally confused!!! Please help!
« Reply #1 on: March 14, 2011, 11:13:41 am »
Ohh and I forgot to say he has cronic Diareaha. Its lasted 6 months now, he is totally drained from all the poos and Viral Infections he is getting.
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Offline ~ Vik ~

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Re: Totally confused!!! Please help!
« Reply #2 on: March 16, 2011, 01:21:43 am »
Mostly bumping for you hon, as I've not had to deal with a lot of what you're going through!  (((hugs))) for you and your wee man, you've been through so much!

The ED that's been recommended to you, are you eliminating foods containing fructose?  Are you in consultation with a dietitian, or do you have a list of safe/unsafe foods?  And this is in addition to eliminating dairy because of MPI?  There's a great website with tons of information on children and food allergies that might be worth checking out for more information:  http://www.kidswithfoodallergies.org/

Re: the chronic diarrhea, have you tried the BRAT diet?  (bananas, rice, applesauce, toast) Not sure how much of that is safe for him, but even if you can incorporate some of that in his diet every day it might help a bit.  They're all naturally constipating foods and can help bind things up.  Conversely, I would try to avoid the naturally laxative foods like pears, prunes, peaches, apricots, etc.  (though if you're eliminating fructose that probably won't be a problem :P)  Also, if he's MPI, have you investigated the possibility that he might be intolerant to soy too?  Many MPI babies are MSPI, and if that is the case soy might be contributing to his digestive troubles.

I hope some other moms jump on with thoughts for you too! :-*

D ~ dairy, egg, peanut/nut and mustard allergies
Proud to have breastfed for over 24 months!


Offline ~Sarah~

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Re: Totally confused!!! Please help!
« Reply #3 on: March 16, 2011, 04:25:00 am »
Just dropping off some {{{HUGS}}}

I have dealt with the MSPI and the reflux/gerd...no fun at all.

Also not sure where you are at, but can you or have you seen an Occupational Therapist? 

I too hope you get an opportunity to meet with a dietician/nutritionist so you can form a proper plan for your ED.

Do you have a sleeping wedge for sleeps?

Offline babybarr

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Re: Totally confused!!! Please help!
« Reply #4 on: March 16, 2011, 11:29:16 am »
Hi there!  Haven't read through all your replies but thought I'd pop on and post as my son has an immune deficiency too, he has neutropenia.  Please feel free to PM me if you want to have an understanding ear with regard to infections and things.  One thing that has *really* helped with all the antibiotics is giving DS a probiotic every day.  I couldn't believe it when he then pretty much stopped having diarrhea when he was on the abx.  We also have a very strict handwashing regime with visitors etc and we don't do large group atcivities or things like soft play and swimming and that has really helped (sorry you probably do that already) 

Have you got a definitive diagnosis for his low IgA?  So many ((((((hugs)))))) it is hard having a LO who is sick all the time.
LAURA xx




Offline Newby1

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Re: Totally confused!!! Please help!
« Reply #5 on: March 16, 2011, 14:06:32 pm »
Hello All,

So I have tried the BRAT or in his case BRT  ;D And fingers crossed, it does look a little better today. Still loose but not so watery, hope your not eating after that discription  ::)  ;D

Vikki - I am sorry to sound so ignorant but what is a Occupational Therpist? I have not heard of this before.

Sarah - We did have a Dietition is Dublin, but she even addmitted that he needs more specilist help. As she was more then to give healthy eating tips. She was the one that believed me that he was intollarant of Dairy and got a priscription for Neocate.

As for the Soy he was off it for a long time but we re-introduced it. He doesnt each much actually, usally just the odd bit as a prop to get the meds in  ;D

 ;D ;D

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Offline ~Sarah~

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Re: Totally confused!!! Please help!
« Reply #6 on: March 16, 2011, 14:42:51 pm »
Here is a link to a hospital website that pretty much describes everything a Occ. Therapist does
http://www.memorialhospital.org/occupationaltherapy.htm
Basically they help with daily functions

Mostly in your case they deal with eating issues like how to deal with textures etc. to promote the ability to eat.  When they have associated food with pain for a long time they need sometimes to be introduced to it and they have methods to do that sort of thing.

So like for my ds he was still little, but he was having feeding issues from his reflux.  They looked for tongue tie and watched and felt how his tongue moved while eating.  He was also getting a flat head from the neck pull associated with reflux so she helped me with exercises for that.  Now we will be seeing her again bc he has texture issues with his food most likely due to his reflux.

I know they are called something else in other countries, but I can't remember what it is, sorry

Offline EloysH

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Re: Totally confused!!! Please help!
« Reply #7 on: March 17, 2011, 12:13:06 pm »
Just to follow up on our chats on another thread, here is a link to the salicylate charts so you can watch the content of foods:

http://failsafediet.wordpress.com/the-rpah-elimination-diet-failsafe/salicylate-content-of-foods/


Offline Newby1

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Re: Totally confused!!! Please help!
« Reply #8 on: March 17, 2011, 16:46:23 pm »
Hi!

Thank you I will have a read through now. WOW I really can not believe the change in him, only a few days ago I was planning how to take care of my sick baby long term  :'( And now! He is like a new child, sleeping, eating and his poop is normal! after 6 months, I am so happy about poop.  ;D My life has changed  ::)

Thank you! I really can not say it enough its changed our whole lifes, Sounds dramatic but it has.

Charlotte xx
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Offline Buntybear

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Re: Totally confused!!! Please help!
« Reply #9 on: March 17, 2011, 18:45:14 pm »
That is great news - what is it that has made the difference do you think - the BRT diet??

Offline Newby1

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Re: Totally confused!!! Please help!
« Reply #10 on: March 17, 2011, 19:09:31 pm »
 ;D Thats the question!  ::) I think maybe a bit of BRT and Fructose / SS free.

BRT, Because the diarrhea has stopped.

Fructose / SS, Also because of the diarrhea but also the change in mood, sleep and Reflux. Last week he was refluxing even on 20mg of Losac. It was bothering him and now I havnt seen him Reflux at all. He is very happy and calm, something he hasnt been for a long time. He was very hyper and crying and screaming alot. He is going to sleep everynight at 9pm and sleeping 10 hours stright! His day has also becaus

So I think I will stay the same for a few weeks then maybe try some fruit and see how he goes. In one month we have to stop the Losac and I am really hopeing the change in diet will make it ok. If not he has to have surgery :-(
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Offline babybarr

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Re: Totally confused!!! Please help!
« Reply #11 on: March 17, 2011, 21:49:11 pm »
Why does he have to stop the losec?

(((hugs))) for you today and pleased things are looking up. :)
LAURA xx




Offline fireredjewel

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Re: Totally confused!!! Please help!
« Reply #12 on: March 18, 2011, 02:11:14 am »
Glad your LO is doing so much better. :-)
If you need some resources re Fructose Malabsorption, I can send you some links. I have fructose malabsorption (borderline) so refer to these often, they are (mostly) from Australia's leading dietician/researcher in this area.
just pm me!
ali
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Offline Newby1

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Re: Totally confused!!! Please help!
« Reply #13 on: March 18, 2011, 03:10:03 am »
ha ha I spoke to soon! Its 4am and he is awake and walking around.  ::) But I think its more a routine issue as he napped 2.5 hours today. So I think I will cut it back to 1 / 1.5 tommorrow. He always sleeps 12 hours incl day sleep, But we thought he may just need to catch up!

As for the Losac, I am actually unsure. I think he wants to do a test to see if he still needs it. But he said if it fails again he wants to go in and check everything is normal as he has had such extreme symptoms. Such as still refluxing on 20mg, this is the same dose as my farther and grandmother!

But since the diet change I have not heard him reflux once so I am hopeful at least!  ;D
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