Re: Desperate Mom Needs Help

November 6, 2011

Ronette, sorry to hear your story, and welcome. After reading this a few questions come to mind.Are you SURE it was the formula and not the vaccines that caused this? They give Hep B at birth and others????You may want to try to eliminate dairy or gluten casien? Juice plus make a juice box for children with 11 grams of fiber per boxsounds like it could be a food allergyI'd read the files section before you try PEG. Our normal child had a life changing experience from this chemicalJeanie go to the bottom of the e-mail, click on visit your groupTo: miralax Sent: Sun, November 6, 2011 5:23:37 AMSubject: Desperate Mom Needs Help

Hi Everyone,

I joined the group a while a go but haven't been able to follow along and research the files as I have needed to. I was referred by a friend who is a member of the Specific Carbohydrate group. My little boy is physically and mentally impaired due to a genetic deletion called 1p36. Anyway, like most special needs kids, he suffers from gut issues that trigger seizures and interfer with his development. He is 3 yrs old but developmentally about 5 months old. He started having gut issues at 2 months because of the formula I was told to give him. That's when he had his first seizure and those turned into Infantile Spasms. After 3 yrs of this, I know his seizures are triggered by abnormal eliminations, whether his stools are too loose or too hard.

I am totally exausted. I thought we had a good routine going but his stools got loose, triggering seizures again. So I increased the good fats in his diet to help with that. Stools firmed up almost immediately for about 2 weeks and I thought we were good. He was laughing and smiling again with no seizures. Now he is constipated and seizures are back...ugh....! We are up to about 370 mg of magnesium. He gets 1 cap of Magnesium citrate(170mg) and 200mg from his powder vitamin.

He used to take a prune/orange juice combo every morning but now he mostly refuses it. I also stopped the cod liver oil because I thought he may be intolerant to one of the ingredients but now I don't now.

I'm an emotional wreck because of this constant roller coaster and could really use some direction. There is so much information and I feel like I've done everything I know to do except concede defeat and put him on Miralax like all of the other 1p36 kids. He has never been on medication, and I'm trying so hard to get him to go naturally. But these seizures disrupt EVERYTHING and I don't know how much more I can hold out.

Your help would be greatly appreciated.

Ronette ( 3 yrs, 1p36 Chromosome Deletion Syndrome)

November 6, 2011

Please try Sunsweet Plum Smart juice as a substitute for the prune juice combo he refuses. The Plum Smart is just as effective & tastes much better. Plum Smart is found on the aisle with the prune juice in your market.Also many in this group will recommend Kid Calm. I use Bluebonnet liquid Calcium Magnesium to help my dd go everyday along with the Plum Smart 8 oz 1x a dayHTH, YvetteSent from my iPad

Hi Everyone,

I joined the group a while a go but haven't been able to follow along and research the files as I have needed to. I was referred by a friend who is a member of the Specific Carbohydrate group. My little boy is physically and mentally impaired due to a genetic deletion called 1p36. Anyway, like most special needs kids, he suffers from gut issues that trigger seizures and interfer with his development. He is 3 yrs old but developmentally about 5 months old. He started having gut issues at 2 months because of the formula I was told to give him. That's when he had his first seizure and those turned into Infantile Spasms. After 3 yrs of this, I know his seizures are triggered by abnormal eliminations, whether his stools are too loose or too hard.

I am totally exausted. I thought we had a good routine going but his stools got loose, triggering seizures again. So I increased the good fats in his diet to help with that. Stools firmed up almost immediately for about 2 weeks and I thought we were good. He was laughing and smiling again with no seizures. Now he is constipated and seizures are back...ugh....! We are up to about 370 mg of magnesium. He gets 1 cap of Magnesium citrate(170mg) and 200mg from his powder vitamin.

He used to take a prune/orange juice combo every morning but now he mostly refuses it. I also stopped the cod liver oil because I thought he may be intolerant to one of the ingredients but now I don't now.

I'm an emotional wreck because of this constant roller coaster and could really use some direction. There is so much information and I feel like I've done everything I know to do except concede defeat and put him on Miralax like all of the other 1p36 kids. He has never been on medication, and I'm trying so hard to get him to go naturally. But these seizures disrupt EVERYTHING and I don't know how much more I can hold out.

Your help would be greatly appreciated.

Ronette ( 3 yrs, 1p36 Chromosome Deletion Syndrome)

November 6, 2011

Hello Ronette. So sorry to hear about what you are going through. My heart bleeds for you.What worked for my DD was a combination of probiotics (Good Start formulas, originally Nestle) and in her cereals (Good Belly Cereals) and a daily dose of Vitamin C Gummy Vites by Vitafusion. Initially, we had to administer Fleet's glycerine enema if she hadn't gone by the 3rd day, but we had to do that only 3 or 4 times.For us, milk with lactose was the culprit. She is doing well on organic lactose-free milk now.I do hope you do not have to resort to Miralax. For my DD, it caused failure to thrive (she didn't gain any weight or grow in height for the

duration she was on Miralax - 8.5 months) and behavioral issues as well as some tics that have thankfully gone away.I wish you the best of luck. To: "miralax " <miralax >Sent: Sunday, November 6, 2011 11:09 AMSubject: Re: Desperate Mom Needs Help

Please try Sunsweet Plum Smart juice as a substitute for the prune juice combo he refuses. The Plum Smart is just as effective & tastes much better. Plum Smart is found on the aisle with the prune juice in your market.Also many in this group will recommend Kid Calm. I use Bluebonnet liquid Calcium Magnesium to help my dd go everyday along with the Plum Smart 8 oz 1x a dayHTH, YvetteSent from my iPad

Hi Everyone,

I joined the group a while a go but haven't been able to follow along and research the files as I have needed to. I was referred by a friend who is a member of the Specific Carbohydrate group. My little boy is physically and mentally impaired due to a genetic deletion called 1p36. Anyway, like most special needs kids, he suffers from gut issues that trigger seizures and interfer with his development. He is 3 yrs old but developmentally about 5 months old. He started having gut issues at 2 months because of the formula I was told to give him. That's when he had his first seizure and those turned into Infantile Spasms. After 3 yrs of this, I know his seizures are triggered by abnormal eliminations, whether his stools are too loose or too hard.

I am totally exausted. I thought we had a good routine going but his stools got loose, triggering seizures again. So I increased the good fats in his diet to help with that. Stools firmed up almost immediately for about 2 weeks and I thought we were good. He was laughing and smiling again with no seizures. Now he is constipated and seizures are back...ugh....! We are up to about 370 mg of magnesium. He gets 1 cap of Magnesium citrate(170mg) and 200mg from his powder vitamin.

He used to take a prune/orange juice combo every morning but now he mostly refuses it. I also stopped the cod liver oil because I thought he may be intolerant to one of the ingredients but now I don't now.

I'm an emotional wreck because of this constant roller coaster and could really use some direction. There is so much information and I feel like I've done everything I know to do except concede defeat and put him on Miralax like all of the other 1p36 kids. He has never been on medication, and I'm trying so hard to get him to go naturally. But these seizures disrupt EVERYTHING and I don't know how much more I can hold out.

Your help would be greatly appreciated.

Ronette ( 3 yrs, 1p36 Chromosome Deletion Syndrome)

November 6, 2011

Hello Ronette,

I'm so sorry to hear what you are going through.

I'm not going through your issues, but I'm wondering if you have ever tried homeopathy? We have used it for all kinds of illness and injury since before my kids were born and it's known to work on gut issues and nervous system. If it interests you at all, Amy Lansky, a former NASA scientist wrote a book on curing her son's autism with homeopathy (http://www.impossiblecure.com/index.php) - all sensory and gut issues were healed. She has a page of parents with similar stories. There are other sites with practices that specialize in gut and nervous system.

I wish you the best as you search for answers. Carol

Hello Ronette. So sorry to hear about what you are going through. My heart bleeds for you.

What worked for my DD was a combination of probiotics (Good Start formulas, originally Nestle) and in her cereals (Good Belly Cereals) and a daily dose of Vitamin C Gummy Vites by Vitafusion. Initially, we had to administer Fleet's glycerine enema if she hadn't gone by the 3rd day, but we had to do that only 3 or 4 times.

For us, milk with lactose was the culprit. She is doing well on organic lactose-free milk now.

I do hope you do not have to resort to Miralax. For my DD, it caused failure to thrive (she didn't gain any weight or grow in height for the duration she was on Miralax - 8.5 months) and behavioral issues as well as some tics that have thankfully gone away.

I wish you the best of luck.

To: "miralax " <miralax >Sent: Sunday, November 6, 2011 11:09 AMSubject: Re: Desperate Mom Needs Help

Please try Sunsweet Plum Smart juice as a substitute for the prune juice combo he refuses. The Plum Smart is just as effective & tastes much better.

Plum Smart is found on the aisle with the prune juice in your market.

Also many in this group will recommend Kid Calm. I use Bluebonnet liquid Calcium Magnesium to help my dd go everyday along with the Plum Smart 8 oz 1x a day

HTH,

Yvette

Sent from my iPad

Hi Everyone,I joined the group a while a go but haven't been able to follow along and research the files as I have needed to. I was referred by a friend who is a member of the Specific Carbohydrate group. My little boy is physically and mentally impaired due to a genetic deletion called 1p36. Anyway, like most special needs kids, he suffers from gut issues that trigger seizures and interfer with his development. He is 3 yrs old but developmentally about 5 months old. He started having gut issues at 2 months because of the formula I was told to give him. That's when he had his first seizure and those turned into Infantile Spasms. After 3 yrs of this, I know his seizures are triggered by abnormal eliminations, whether his stools are too loose or too hard. I am totally exausted. I thought we had a good routine going but his stools got loose, triggering seizures again. So I increased the good fats in his diet to help with that. Stools firmed up almost immediately for about 2 weeks and I thought we were good. He was laughing and smiling again with no seizures. Now he is constipated and seizures are back...ugh....! We are up to about 370 mg of magnesium. He gets 1 cap of Magnesium citrate(170mg) and 200mg from his powder vitamin. He used to take a prune/orange juice combo every morning but now he mostly refuses it. I also stopped the cod liver oil because I thought he may be intolerant to one of the ingredients but now I don't now.I'm an emotional wreck because of this constant roller coaster and could really use some direction. There is so much information and I feel like I've done everything I know to do except concede defeat and put him on Miralax like all of the other 1p36 kids. He has never been on medication, and I'm trying so hard to get him to go naturally. But these seizures disrupt EVERYTHING and I don't know how much more I can hold out.Your help would be greatly appreciated.Ronette ( 3 yrs, 1p36 Chromosome Deletion Syndrome)

November 6, 2011

Kirkman labs chewable probiotic works great if there is any kind of flora imbalance To: miralax Sent: Sun, November 6, 2011 5:44:45 AMSubject: Re: Desperate Mom Needs Help

Ronette, sorry to hear your story, and welcome. After reading this a few questions come to mind.Are you SURE it was the formula and not the vaccines that caused this? They give Hep B at birth and others????You may want to try to eliminate dairy or gluten casien? Juice plus make a juice box for children with 11 grams of fiber per boxsounds like it could be a food allergyI'd read the files section before you try PEG. Our normal child had a life changing experience from this chemicalJeanie go to the bottom of the e-mail, click on visit your groupTo: miralax Sent: Sun, November 6, 2011 5:23:37 AMSubject: Desperate Mom Needs Help

Hi Everyone,

I joined the group a while a go but haven't been able to follow along and research the files as I have needed to. I was referred by a friend who is a member of the Specific Carbohydrate group. My little boy is physically and mentally impaired due to a genetic deletion called 1p36. Anyway, like most special needs kids, he suffers from gut issues that trigger seizures and interfer with his development. He is 3 yrs old but developmentally about 5 months old. He started having gut issues at 2 months because of the formula I was told to give him. That's when he had his first seizure and those turned into Infantile Spasms. After 3 yrs of this, I know his seizures are triggered by abnormal eliminations, whether his stools are too loose or too hard.

I am totally exausted. I thought we had a good routine going but his stools got loose, triggering seizures again. So I increased the good fats in his diet to help with that. Stools firmed up almost immediately for about 2 weeks and I thought we were good. He was laughing and smiling again with no seizures. Now he is constipated and seizures are back...ugh....! We are up to about 370 mg of magnesium. He gets 1 cap of Magnesium citrate(170mg) and 200mg from his powder vitamin.

He used to take a prune/orange juice combo every morning but now he mostly refuses it. I also stopped the cod liver oil because I thought he may be intolerant to one of the ingredients but now I don't now.

I'm an emotional wreck because of this constant roller coaster and could really use some direction. There is so much information and I feel like I've done everything I know to do except concede defeat and put him on Miralax like all of the other 1p36 kids. He has never been on medication, and I'm trying so hard to get him to go naturally. But these seizures disrupt EVERYTHING and I don't know how much more I can hold out.

Your help would be greatly appreciated.

Ronette ( 3 yrs, 1p36 Chromosome Deletion Syndrome)

November 6, 2011

Thanks everyone, he finally went this morning. I will look at everything I'm

doing and see what I need to change. I will try changing the prune juice. He

already gets probiotic everyday. I also make him apples/pears in a crockpot

everyweek that he gets 3x/day. I thought about maybe added prunes to it because

we have never had problems with him eating that.

Thanks for helping giving me some great things to think about.

Ronette ( 1p36)

>

> Hi Everyone,

>

> I joined the group a while a go but haven't been able to follow along and

> research the files as I have needed to. I was referred by a friend who is a

> member of the Specific Carbohydrate group. My little boy is physically and

> mentally impaired due to a genetic deletion called 1p36. Anyway, like most

> special needs kids, he suffers from gut issues that trigger seizures and

> interfer with his development. He is 3 yrs old but developmentally about 5

> months old. He started having gut issues at 2 months because of the formula

> I was told to give him. That's when he had his first seizure and those

> turned into Infantile Spasms. After 3 yrs of this, I know his seizures are

> triggered by abnormal eliminations, whether his stools are too loose or too

> hard.

>

> I am totally exausted. I thought we had a good routine going but his

> stools got loose, triggering seizures again. So I increased the good fats in

his

> diet to help with that. Stools firmed up almost immediately for about 2

> weeks and I thought we were good. He was laughing and smiling again with no

> seizures. Now he is constipated and seizures are back...ugh....! We are up

> to about 370 mg of magnesium. He gets 1 cap of Magnesium citrate(170mg) and

> 200mg from his powder vitamin.

>

> He used to take a prune/orange juice combo every morning but now he mostly

> refuses it. I also stopped the cod liver oil because I thought he may be

> intolerant to one of the ingredients but now I don't now.

>

> I'm an emotional wreck because of this constant roller coaster and could

> really use some direction. There is so much information and I feel like I've

> done everything I know to do except concede defeat and put him on Miralax

> like all of the other 1p36 kids. He has never been on medication, and I'm

> trying so hard to get him to go naturally. But these seizures disrupt

> EVERYTHING and I don't know how much more I can hold out.

>

> Your help would be greatly appreciated.

>

> Ronette ( 3 yrs, 1p36 Chromosome Deletion Syndrome)

>

November 6, 2011

Hi Ronette - don't give up - you are on the right track. BTW - If the problem

started at 2 months, my $$ goes with the DTaP vaccine causing this too. That

was what started my son's constipation journey.

Anyway, your mention of seizures -- and it appears to have been helped with

increasing fats -- right? You might want to look into the ketogenic diet.

There's controversy surrounding it - as with anything -- but you might find some

help there. The SCD has some similarity too.

For many of here, eliminating gluten and/or dairy proved to be very helpful, so

that may be a path you might want to explore too.

No being familiar with the genetic condition, do you have a thought on whether

the consipation is caused by low motility (muscle tone) or do you think it has

more to do with something else?

>

> Â

> >Hi Everyone,

> >

> >I joined the group a while a go but haven't been able to follow along and

research the files as I have needed to. I was referred by a friend who is a

member of the Specific Carbohydrate group. My little boy is physically and

mentally impaired due to a genetic deletion called 1p36. Anyway, like most

special needs kids, he suffers from gut issues that trigger seizures and

interfer with his development. He is 3 yrs old but developmentally about 5

months old. He started having gut issues at 2 months because of the formula I

was told to give him. That's when he had his first seizure and those turned into

Infantile Spasms. After 3 yrs of this, I know his seizures are triggered by

abnormal eliminations, whether his stools are too loose or too hard.

> >

> >I am totally exausted. I thought we had a good routine going but his stools

got loose, triggering seizures again. So I increased the good fats in his diet

to help with that. Stools firmed up almost immediately for about 2 weeks and I

thought we were good. He was laughing and smiling again with no seizures. Now he

is constipated and seizures are back...ugh....! We are up to about 370 mg of

magnesium. He gets 1 cap of Magnesium citrate(170mg) and 200mg from his powder

vitamin.

> >

> >He used to take a prune/orange juice combo every morning but now he mostly

refuses it. I also stopped the cod liver oil because I thought he may be

intolerant to one of the ingredients but now I don't now.

> >

> >I'm an emotional wreck because of this constant roller coaster and could

really use some direction. There is so much information and I feel like I've

done everything I know to do except concede defeat and put him on Miralax like

all of the other 1p36 kids. He has never been on medication, and I'm trying so

hard to get him to go naturally. But these seizures disrupt EVERYTHING and I

don't know how much more I can hold out.

> >

> >Your help would be greatly appreciated.

> >

> >Ronette ( 3 yrs, 1p36 Chromosome Deletion Syndrome)

> >

>

November 6, 2011

Ronette, did you ever notice a difference with the probiotic? What kind are you giving? To: miralax Sent: Sun, November 6, 2011 1:36:25 PMSubject: Re: Desperate Mom Needs Help

Thanks everyone, he finally went this morning. I will look at everything I'm doing and see what I need to change. I will try changing the prune juice. He already gets probiotic everyday. I also make him apples/pears in a crockpot everyweek that he gets 3x/day. I thought about maybe added prunes to it because we have never had problems with him eating that.