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Permalink Reply by Karen flor on January 29, 2011 at 7:40am

Hi Jesssica......We were told to start our son on Zanac 75 last July....Dr Wong prescribed this because she felt he was overeating{ desire for lots of carbs} to compensate for the burning/indigestion symptoms.....I give it to him at night with his vitamins and it lasts all the next day.....I don't know why you're starting this for your son, but it seems to have helped Lucas. Good Luck!!!  Karen 

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Permalink Reply by Jessica Divin on January 29, 2011 at 9:26am

Hi Karen!  We are starting Ben on Zantac for the same reason.  We noticed that he kept telling us he was hungry even immediately following a meal.  We brought it up with Dr. Wong too and she told us to do the 75mg as well.  Thanks for your advice-we will try before bedtime!

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Permalink Reply by Joshua's mom on January 29, 2011 at 6:16pm

My husband has a lot of problems with acid and indigestion and after trying Zantac etc., he turned to lemon water. The way it works is to fight acid with acid and it then levels itself out. We are big into doing everything as naturally as we can without relying on prescriptions to aide the side-effects.

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Permalink Reply by JUAN PEDRO ARBULU on January 30, 2011 at 8:57pm

Hi I was wondering if you are still orderin Idebenone from smart nutrition, is Joshua still taking it?

 

greetings

JP.

Joshua's mom said:

My husband has a lot of problems with acid and indigestion and after trying Zantac etc., he turned to lemon water. The way it works is to fight acid with acid and it then levels itself out. We are big into doing everything as naturally as we can without relying on prescriptions to aide the side-effects.

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Permalink Reply by Joshua's mom on January 30, 2011 at 9:50pm

Yes we are still ordering Idebenone. I sent you a message on facebook in telling what the doctors have seen what the effects of it is and we now order it from Kirkman.

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Permalink Reply by Cheri Gunvalson on January 31, 2011 at 11:52am

Our 19 yo son Jacob also is on an acid reducer with his pm meds.  In addition after many years of deflazacort he developed concentration issues from the long term corticosteroids and so he now takes his deflazacort also in the pm and it helps his ability to concentrate.  He is now a full time college student.

Karen flor said:

Hi Jesssica......We were told to start our son on Zanac 75 last July....Dr Wong prescribed this because she felt he was overeating{ desire for lots of carbs} to compensate for the burning/indigestion symptoms.....I give it to him at night with his vitamins and it lasts all the next day.....I don't know why you're starting this for your son, but it seems to have helped Lucas. Good Luck!!!  Karen 

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Permalink Reply by amit gupta on February 1, 2011 at 3:43pm

hi cheri, did your son have only concentration side effect or other too like cataracts? did he always take deflaz? we'd probably be starting steriods for our 7 yr old in a month and we are very scared...

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Permalink Reply by Amrit on February 3, 2011 at 12:03pm

Hi Cheri,

It is really nice to know that Jacab is doing good and is full time college student.

Can you please let us know how long  he has been on deflazcort?

Thanks,

Amrit

 

Hi Amit,

As per Dr Wong, cataracts should not scare you. We need to monitor the eyes and if cataracts developed it can be easily removed. My 7yr old son has been on defazacort for 2yrs now. And we haven't really seen any side effects.

Thanks,

Amrit

Cheri Gunvalson said:

Our 19 yo son Jacob also is on an acid reducer with his pm meds.  In addition after many years of deflazacort he developed concentration issues from the long term corticosteroids and so he now takes his deflazacort also in the pm and it helps his ability to concentrate.  He is now a full time college student.

Karen flor said:

Hi Jesssica......We were told to start our son on Zanac 75 last July....Dr Wong prescribed this because she felt he was overeating{ desire for lots of carbs} to compensate for the burning/indigestion symptoms.....I give it to him at night with his vitamins and it lasts all the next day.....I don't know why you're starting this for your son, but it seems to have helped Lucas. Good Luck!!!  Karen 

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Permalink Reply by Cheri Gunvalson on February 3, 2011 at 12:21pm

Jacob has been on deflazacort for 12 years. 

Amrit said:

Hi Cheri,

It is really nice to know that Jacab is doing good and is full time college student.

Can you please let us know how long  he has been on deflazcort?

Thanks,

Amrit

 

Hi Amit,

As per Dr Wong, cataracts should not scare you. We need to monitor the eyes and if cataracts developed it can be easily removed. My 7yr old son has been on defazacort for 2yrs now. And we haven't really seen any side effects.

Thanks,

Amrit

Cheri Gunvalson said:

Our 19 yo son Jacob also is on an acid reducer with his pm meds.  In addition after many years of deflazacort he developed concentration issues from the long term corticosteroids and so he now takes his deflazacort also in the pm and it helps his ability to concentrate.  He is now a full time college student.

Karen flor said:

Hi Jesssica......We were told to start our son on Zanac 75 last July....Dr Wong prescribed this because she felt he was overeating{ desire for lots of carbs} to compensate for the burning/indigestion symptoms.....I give it to him at night with his vitamins and it lasts all the next day.....I don't know why you're starting this for your son, but it seems to have helped Lucas. Good Luck!!!  Karen 

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Permalink Reply by amit gupta on February 23, 2011 at 11:51am

hi naomi...i believe your son joshua was in the ace31 trial...can you update us on it?

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Permalink Reply by Joshua's mom on February 23, 2011 at 4:27pm

Amit,
Joshua's neurologist keeps in touch with the Doctor running the trial in Calgary and she had told him Joshua is still on the list. We haven't been contacted by them since registration, but the list is/was bigger than they had anticipated.

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Permalink Reply by amit gupta on February 24, 2011 at 11:02am

thanks, naomi...keep us updated on this.

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