Jump to content
RemedySpot.com

Re: Feedback on current status/ mito issues?

Rate this topic

Guest guest

By Guest guest
in Health, Medicine and Natural Healing 09

 Share

Recommended Posts

Guest guest

Guest guest

Posted
Posted

the viva does take awhile because basically you're trickling in a little each

week. My daughter is 14, 106 lbs and takes 8 gms per week. She's been on it 4

years and carries a trough around 1100. She is on hospital homebound due to

fatigue and abdominal pain from her IBD so we're not the best judge there. But

before her IBD flare she marched in the band earlier this year and went to

school full time with only 2 days absent.

We're finding out in the last couple of weeks how much her gut relates to her

body. She was on Lactulose, Senokot, Mag Citrate an Go Lytely for years. She

has been on Miralax off and on for the last 4 years or so and had a cecostomy

tube for constipation when she was younger. Seems strange to be on the other

end of the stooling pattern now.

I'd give the viva up to 6 months to get the system completely jacked up and

supplemented. Also try and keep him cleaned out with the Miralax for a week or

so and not just routinely going. It always made a world of difference with

Macey when she felt not quite so full and weighted down.

Ursula

Mom to (17) and Macey (14)

http://www.caringbridge.org/visit/maceyholleman

________________________________

From: CYNDITK <cyndi@...>

Sent: Tue, December 8, 2009 3:34:49 PM

Subject: Feedback on current status/ mito issues?

Hi all,

My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just

started on Vivaglobin. He has suffered from chronic infections, chronic fatigue,

and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

The best 2 months we had were when he was on Privigen and Miralax- he made it

through that whole time with high energy and few gut problems.

We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

Could that be a reason he doesn't seem to be responding well? Or does it take a

while to get up to speed with the Viva?

I have wondered about Mito issues due to his chronic fatigue- he does not have

seizures and I am unsure if it would be helpful to have to travel to Cleveland

Clinic to get screened for mito.

Does anyone have thoughts on this?

Thanks,

Cyndi

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

the viva does take awhile because basically you're trickling in a little each

week. My daughter is 14, 106 lbs and takes 8 gms per week. She's been on it 4

years and carries a trough around 1100. She is on hospital homebound due to

fatigue and abdominal pain from her IBD so we're not the best judge there. But

before her IBD flare she marched in the band earlier this year and went to

school full time with only 2 days absent.

We're finding out in the last couple of weeks how much her gut relates to her

body. She was on Lactulose, Senokot, Mag Citrate an Go Lytely for years. She

has been on Miralax off and on for the last 4 years or so and had a cecostomy

tube for constipation when she was younger. Seems strange to be on the other

end of the stooling pattern now.

I'd give the viva up to 6 months to get the system completely jacked up and

supplemented. Also try and keep him cleaned out with the Miralax for a week or

so and not just routinely going. It always made a world of difference with

Macey when she felt not quite so full and weighted down.

Ursula

Mom to (17) and Macey (14)

http://www.caringbridge.org/visit/maceyholleman

________________________________

From: CYNDITK <cyndi@...>

Sent: Tue, December 8, 2009 3:34:49 PM

Subject: Feedback on current status/ mito issues?

Hi all,

My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just

started on Vivaglobin. He has suffered from chronic infections, chronic fatigue,

and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

The best 2 months we had were when he was on Privigen and Miralax- he made it

through that whole time with high energy and few gut problems.

We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

Could that be a reason he doesn't seem to be responding well? Or does it take a

while to get up to speed with the Viva?

I have wondered about Mito issues due to his chronic fatigue- he does not have

seizures and I am unsure if it would be helpful to have to travel to Cleveland

Clinic to get screened for mito.

Does anyone have thoughts on this?

Thanks,

Cyndi

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

the viva does take awhile because basically you're trickling in a little each

week. My daughter is 14, 106 lbs and takes 8 gms per week. She's been on it 4

years and carries a trough around 1100. She is on hospital homebound due to

fatigue and abdominal pain from her IBD so we're not the best judge there. But

before her IBD flare she marched in the band earlier this year and went to

school full time with only 2 days absent.

We're finding out in the last couple of weeks how much her gut relates to her

body. She was on Lactulose, Senokot, Mag Citrate an Go Lytely for years. She

has been on Miralax off and on for the last 4 years or so and had a cecostomy

tube for constipation when she was younger. Seems strange to be on the other

end of the stooling pattern now.

I'd give the viva up to 6 months to get the system completely jacked up and

supplemented. Also try and keep him cleaned out with the Miralax for a week or

so and not just routinely going. It always made a world of difference with

Macey when she felt not quite so full and weighted down.

Ursula

Mom to (17) and Macey (14)

http://www.caringbridge.org/visit/maceyholleman

________________________________

From: CYNDITK <cyndi@...>

Sent: Tue, December 8, 2009 3:34:49 PM

Subject: Feedback on current status/ mito issues?

Hi all,

My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just

started on Vivaglobin. He has suffered from chronic infections, chronic fatigue,

and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

The best 2 months we had were when he was on Privigen and Miralax- he made it

through that whole time with high energy and few gut problems.

We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

Could that be a reason he doesn't seem to be responding well? Or does it take a

while to get up to speed with the Viva?

I have wondered about Mito issues due to his chronic fatigue- he does not have

seizures and I am unsure if it would be helpful to have to travel to Cleveland

Clinic to get screened for mito.

Does anyone have thoughts on this?

Thanks,

Cyndi

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Thanks Ursula,

When you say " try to keep him cleaned out with the Miralax for a week or so and

not just going " what do you mean by this?

Lucas takes Miralax nightly-should we do a higher dose for a week to do a clean

out?

Did Macey used to have diarreah? Is that what you mean by being on the other

side of the bowel issue?

I have long suspected IBD for Lucas but we have been managing OK until recently.

What was Macey's process of getting diagnosed with IBD like?

And due to a flare she had to drop out of school? Has she ever tried short

courses of steroids?

Cyndi

>

> the viva does take awhile because basically you're trickling in a little each

week. My daughter is 14, 106 lbs and takes 8 gms per week. She's been on it 4

years and carries a trough around 1100. She is on hospital homebound due to

fatigue and abdominal pain from her IBD so we're not the best judge there. But

before her IBD flare she marched in the band earlier this year and went to

school full time with only 2 days absent.

>

> We're finding out in the last couple of weeks how much her gut relates to her

body. She was on Lactulose, Senokot, Mag Citrate an Go Lytely for years. She

has been on Miralax off and on for the last 4 years or so and had a cecostomy

tube for constipation when she was younger. Seems strange to be on the other

end of the stooling pattern now.

>

> I'd give the viva up to 6 months to get the system completely jacked up and

supplemented. Also try and keep him cleaned out with the Miralax for a week or

so and not just routinely going. It always made a world of difference with

Macey when she felt not quite so full and weighted down.

> Ursula

> Mom to (17) and Macey (14)

> http://www.caringbridge.org/visit/maceyholleman

>

>

>

>

> ________________________________

> From: CYNDITK <cyndi@...>

>

> Sent: Tue, December 8, 2009 3:34:49 PM

> Subject: Feedback on current status/ mito issues?

>

>

>

> Hi all,

>

> My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just

started on Vivaglobin. He has suffered from chronic infections, chronic fatigue,

and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

>

> We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

>

> The best 2 months we had were when he was on Privigen and Miralax- he made it

through that whole time with high energy and few gut problems.

>

> We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

> Could that be a reason he doesn't seem to be responding well? Or does it take

a while to get up to speed with the Viva?

>

> I have wondered about Mito issues due to his chronic fatigue- he does not have

seizures and I am unsure if it would be helpful to have to travel to Cleveland

Clinic to get screened for mito.

>

> Does anyone have thoughts on this?

>

> Thanks,

> Cyndi

>

>

>

>

>

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Hi Cyndi, Sounds like this has been a tough road. My son is 14 and is about

150lbs and is doing 6gms per week. He is not on Viva but Gammagard SubQ. He is

DOING GREAT! But he has been on infusions since he was 3. First IV then 4 years

ago he started SubQ. It takes a little while to build up in the system but for

us SubQ is fantastic. You do not have the peaks and troughs meaning the fatigue

because his level stays constant rather than fluctuating with the Gamma globulin

running out in 23days. I would say you need to give it at least 6 months to get

him stable. How old is your son? My son has had a few breakthrough infections

including pneumonia once but overall his gut issues have subsided, along with

his chronic infections and severe allergy issues. I would just stay with it and

give it a chance to readjust his system. I know it is hard to see your son so

sick but it takes time for it to settle things down.

BARBIE

________________________________

From: CYNDITK <cyndi@...>

Sent: Tue, December 8, 2009 2:34:49 PM

Subject: Feedback on current status/ mito issues?

Hi all,

My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just

started on Vivaglobin. He has suffered from chronic infections, chronic fatigue,

and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

The best 2 months we had were when he was on Privigen and Miralax- he made it

through that whole time with high energy and few gut problems.

We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

Could that be a reason he doesn't seem to be responding well? Or does it take a

while to get up to speed with the Viva?

I have wondered about Mito issues due to his chronic fatigue- he does not have

seizures and I am unsure if it would be helpful to have to travel to Cleveland

Clinic to get screened for mito.

Does anyone have thoughts on this?

Thanks,

Cyndi

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Hi Cyndi, Sounds like this has been a tough road. My son is 14 and is about

150lbs and is doing 6gms per week. He is not on Viva but Gammagard SubQ. He is

DOING GREAT! But he has been on infusions since he was 3. First IV then 4 years

ago he started SubQ. It takes a little while to build up in the system but for

us SubQ is fantastic. You do not have the peaks and troughs meaning the fatigue

because his level stays constant rather than fluctuating with the Gamma globulin

running out in 23days. I would say you need to give it at least 6 months to get

him stable. How old is your son? My son has had a few breakthrough infections

including pneumonia once but overall his gut issues have subsided, along with

his chronic infections and severe allergy issues. I would just stay with it and

give it a chance to readjust his system. I know it is hard to see your son so

sick but it takes time for it to settle things down.

BARBIE

________________________________

From: CYNDITK <cyndi@...>

Sent: Tue, December 8, 2009 2:34:49 PM

Subject: Feedback on current status/ mito issues?

Hi all,

My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just

started on Vivaglobin. He has suffered from chronic infections, chronic fatigue,

and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

The best 2 months we had were when he was on Privigen and Miralax- he made it

through that whole time with high energy and few gut problems.

We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

Could that be a reason he doesn't seem to be responding well? Or does it take a

while to get up to speed with the Viva?

I have wondered about Mito issues due to his chronic fatigue- he does not have

seizures and I am unsure if it would be helpful to have to travel to Cleveland

Clinic to get screened for mito.

Does anyone have thoughts on this?

Thanks,

Cyndi

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Hi Cyndi, Sounds like this has been a tough road. My son is 14 and is about

150lbs and is doing 6gms per week. He is not on Viva but Gammagard SubQ. He is

DOING GREAT! But he has been on infusions since he was 3. First IV then 4 years

ago he started SubQ. It takes a little while to build up in the system but for

us SubQ is fantastic. You do not have the peaks and troughs meaning the fatigue

because his level stays constant rather than fluctuating with the Gamma globulin

running out in 23days. I would say you need to give it at least 6 months to get

him stable. How old is your son? My son has had a few breakthrough infections

including pneumonia once but overall his gut issues have subsided, along with

his chronic infections and severe allergy issues. I would just stay with it and

give it a chance to readjust his system. I know it is hard to see your son so

sick but it takes time for it to settle things down.

BARBIE

________________________________

From: CYNDITK <cyndi@...>

Sent: Tue, December 8, 2009 2:34:49 PM

Subject: Feedback on current status/ mito issues?

Hi all,

My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just

started on Vivaglobin. He has suffered from chronic infections, chronic fatigue,

and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

The best 2 months we had were when he was on Privigen and Miralax- he made it

through that whole time with high energy and few gut problems.

We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

Could that be a reason he doesn't seem to be responding well? Or does it take a

while to get up to speed with the Viva?

I have wondered about Mito issues due to his chronic fatigue- he does not have

seizures and I am unsure if it would be helpful to have to travel to Cleveland

Clinic to get screened for mito.

Does anyone have thoughts on this?

Thanks,

Cyndi

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

I would agree with being consistent with the Miralax. You also might check with

your doctor regarding a good multivitamin, Omega3s and also Probiotics. It has

REALLY helped us overall.

BARBIE

________________________________

From: Ursula Holleman <uahollem@...>

Sent: Tue, December 8, 2009 3:04:44 PM

Subject: Re: Feedback on current status/ mito issues?

the viva does take awhile because basically you're trickling in a little each

week. My daughter is 14, 106 lbs and takes 8 gms per week. She's been on it 4

years and carries a trough around 1100. She is on hospital homebound due to

fatigue and abdominal pain from her IBD so we're not the best judge there. But

before her IBD flare she marched in the band earlier this year and went to

school full time with only 2 days absent.

We're finding out in the last couple of weeks how much her gut relates to her

body. She was on Lactulose, Senokot, Mag Citrate an Go Lytely for years. She

has been on Miralax off and on for the last 4 years or so and had a cecostomy

tube for constipation when she was younger. Seems strange to be on the other

end of the stooling pattern now.

I'd give the viva up to 6 months to get the system completely jacked up and

supplemented. Also try and keep him cleaned out with the Miralax for a week or

so and not just routinely going. It always made a world of difference with

Macey when she felt not quite so full and weighted down.

Ursula

Mom to (17) and Macey (14)

http://www.caringbridge.org/visit/maceyholleman

____________ _________ _________ __

From: CYNDITK <cyndisongaia (DOT) com>

groups (DOT) com

Sent: Tue, December 8, 2009 3:34:49 PM

Subject: Feedback on current status/ mito issues?

Hi all,

My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just

started on Vivaglobin. He has suffered from chronic infections, chronic fatigue,

and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

The best 2 months we had were when he was on Privigen and Miralax- he made it

through that whole time with high energy and few gut problems.

We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

Could that be a reason he doesn't seem to be responding well? Or does it take a

while to get up to speed with the Viva?

I have wondered about Mito issues due to his chronic fatigue- he does not have

seizures and I am unsure if it would be helpful to have to travel to Cleveland

Clinic to get screened for mito.

Does anyone have thoughts on this?

Thanks,

Cyndi

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

I would agree with being consistent with the Miralax. You also might check with

your doctor regarding a good multivitamin, Omega3s and also Probiotics. It has

REALLY helped us overall.

BARBIE

________________________________

From: Ursula Holleman <uahollem@...>

Sent: Tue, December 8, 2009 3:04:44 PM

Subject: Re: Feedback on current status/ mito issues?

the viva does take awhile because basically you're trickling in a little each

week. My daughter is 14, 106 lbs and takes 8 gms per week. She's been on it 4

years and carries a trough around 1100. She is on hospital homebound due to

fatigue and abdominal pain from her IBD so we're not the best judge there. But

before her IBD flare she marched in the band earlier this year and went to

school full time with only 2 days absent.

We're finding out in the last couple of weeks how much her gut relates to her

body. She was on Lactulose, Senokot, Mag Citrate an Go Lytely for years. She

has been on Miralax off and on for the last 4 years or so and had a cecostomy

tube for constipation when she was younger. Seems strange to be on the other

end of the stooling pattern now.

I'd give the viva up to 6 months to get the system completely jacked up and

supplemented. Also try and keep him cleaned out with the Miralax for a week or

so and not just routinely going. It always made a world of difference with

Macey when she felt not quite so full and weighted down.

Ursula

Mom to (17) and Macey (14)

http://www.caringbridge.org/visit/maceyholleman

____________ _________ _________ __

From: CYNDITK <cyndisongaia (DOT) com>

groups (DOT) com

Sent: Tue, December 8, 2009 3:34:49 PM

Subject: Feedback on current status/ mito issues?

Hi all,

My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just

started on Vivaglobin. He has suffered from chronic infections, chronic fatigue,

and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

The best 2 months we had were when he was on Privigen and Miralax- he made it

through that whole time with high energy and few gut problems.

We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

Could that be a reason he doesn't seem to be responding well? Or does it take a

while to get up to speed with the Viva?

I have wondered about Mito issues due to his chronic fatigue- he does not have

seizures and I am unsure if it would be helpful to have to travel to Cleveland

Clinic to get screened for mito.

Does anyone have thoughts on this?

Thanks,

Cyndi

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

I would agree with being consistent with the Miralax. You also might check with

your doctor regarding a good multivitamin, Omega3s and also Probiotics. It has

REALLY helped us overall.

BARBIE

________________________________

From: Ursula Holleman <uahollem@...>

Sent: Tue, December 8, 2009 3:04:44 PM

Subject: Re: Feedback on current status/ mito issues?

the viva does take awhile because basically you're trickling in a little each

week. My daughter is 14, 106 lbs and takes 8 gms per week. She's been on it 4

years and carries a trough around 1100. She is on hospital homebound due to

fatigue and abdominal pain from her IBD so we're not the best judge there. But

before her IBD flare she marched in the band earlier this year and went to

school full time with only 2 days absent.

We're finding out in the last couple of weeks how much her gut relates to her

body. She was on Lactulose, Senokot, Mag Citrate an Go Lytely for years. She

has been on Miralax off and on for the last 4 years or so and had a cecostomy

tube for constipation when she was younger. Seems strange to be on the other

end of the stooling pattern now.

I'd give the viva up to 6 months to get the system completely jacked up and

supplemented. Also try and keep him cleaned out with the Miralax for a week or

so and not just routinely going. It always made a world of difference with

Macey when she felt not quite so full and weighted down.

Ursula

Mom to (17) and Macey (14)

http://www.caringbridge.org/visit/maceyholleman

____________ _________ _________ __

From: CYNDITK <cyndisongaia (DOT) com>

groups (DOT) com

Sent: Tue, December 8, 2009 3:34:49 PM

Subject: Feedback on current status/ mito issues?

Hi all,

My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just

started on Vivaglobin. He has suffered from chronic infections, chronic fatigue,

and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

The best 2 months we had were when he was on Privigen and Miralax- he made it

through that whole time with high energy and few gut problems.

We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

Could that be a reason he doesn't seem to be responding well? Or does it take a

while to get up to speed with the Viva?

I have wondered about Mito issues due to his chronic fatigue- he does not have

seizures and I am unsure if it would be helpful to have to travel to Cleveland

Clinic to get screened for mito.

Does anyone have thoughts on this?

Thanks,

Cyndi

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

First check with your doctor but sometimes it takes 3 cup fulls at a time 3

times a day to get Macey going. Then she goes till she is clear and stays on

enough of a dose of Miralax that she stays mushy. Keeping her like that for a

week allows her gut to rest somewhat and the exhaustion to subside.

Macey had chronic constipation from birth until about 2 years ago. At 6 years

old she had a cecostomy tube placed in her colon to do antegrade enemas

(washouts). She had had several NG tubes for GoLytely cleanouts and it was

stripping her of the nutrients and causing havoc to her sinuses. So the tube

was placed and washed everything out with gravity tube GoLytely each day. She

had this for about 2 years until the stoma became infected. After that we had

to rely on the Miralax and one or two more hospital admissions for cleanouts.

Two years ago the tide turned and she had diarrhea and abdominal pain

constantly. Low grade fevers. She had a colonoscopy and they say inflammation.

She went on prednisone for an unrelated infection (pneumonia) and had relief. So

they started her on Entocort which is a steroid made for Crohn's patients.

Macey has been on steroids most of her life for infections and they've always

provided gut relief too so it all made sense.

She went on hospital homebound recently because of the abdominal pain and

fatigue. Her weight had dropped almost 30 lbs and she was on as much IBD meds

without switching to IV's. She recently started Asacol. So now Friday she has

another colonoscopy and they will decide if she starts Imuran or Remicade next.

Ursula

Mom to (17) and Macey (14)

http://www.caringbridge.org/visit/maceyholleman

________________________________

From: CYNDITK <cyndi@...>

Sent: Tue, December 8, 2009 5:31:54 PM

Subject: Re: Feedback on current status/ mito issues?

Thanks Ursula,

When you say " try to keep him cleaned out with the Miralax for a week or so and

not just going " what do you mean by this?

Lucas takes Miralax nightly-should we do a higher dose for a week to do a clean

out?

Did Macey used to have diarreah? Is that what you mean by being on the other

side of the bowel issue?

I have long suspected IBD for Lucas but we have been managing OK until recently.

What was Macey's process of getting diagnosed with IBD like?

And due to a flare she had to drop out of school? Has she ever tried short

courses of steroids?

Cyndi

>

> the viva does take awhile because basically you're trickling in a little each

week. My daughter is 14, 106 lbs and takes 8 gms per week. She's been on it 4

years and carries a trough around 1100. She is on hospital homebound due to

fatigue and abdominal pain from her IBD so we're not the best judge there. But

before her IBD flare she marched in the band earlier this year and went to

school full time with only 2 days absent.

>

> We're finding out in the last couple of weeks how much her gut relates to her

body. She was on Lactulose, Senokot, Mag Citrate an Go Lytely for years. She

has been on Miralax off and on for the last 4 years or so and had a cecostomy

tube for constipation when she was younger. Seems strange to be on the other

end of the stooling pattern now.

>

> I'd give the viva up to 6 months to get the system completely jacked up and

supplemented. Also try and keep him cleaned out with the Miralax for a week or

so and not just routinely going. It always made a world of difference with

Macey when she felt not quite so full and weighted down.

> Ursula

> Mom to (17) and Macey (14)

> http://www.caringbridge.org/visit/maceyholleman

>

>

>

>

> ____________ _________ _________ __

> From: CYNDITK <cyndi@...>

> groups (DOT) com

> Sent: Tue, December 8, 2009 3:34:49 PM

> Subject: Feedback on current status/ mito issues?

>

>

>

> Hi all,

>

> My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just

started on Vivaglobin. He has suffered from chronic infections, chronic fatigue,

and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

>

> We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

>

> The best 2 months we had were when he was on Privigen and Miralax- he made it

through that whole time with high energy and few gut problems.

>

> We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

> Could that be a reason he doesn't seem to be responding well? Or does it take

a while to get up to speed with the Viva?

>

> I have wondered about Mito issues due to his chronic fatigue- he does not have

seizures and I am unsure if it would be helpful to have to travel to Cleveland

Clinic to get screened for mito.

>

> Does anyone have thoughts on this?

>

> Thanks,

> Cyndi

>

>

>

>

>

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Thanks for sharing your story Ursula. Also thanks for the tips on Miralax, we'll

try that.

With my son it went the other way-chronic diarreah for all of early childhood

that gradually turned to constipation as he got older-now its been constipation,

nausea for the last 4 years, even with IG therapy, although he has started

growing and gaining weight on IG, and the nausea has mostly gone away.

I'm so sorry to hear of Macey's difficulties. I know how difficult the pain and

fatigue can be. I hope she is enjoying homeschooling and has lots of

relationships online!

> >

> > the viva does take awhile because basically you're trickling in a little

each week. My daughter is 14, 106 lbs and takes 8 gms per week. She's been on

it 4 years and carries a trough around 1100. She is on hospital homebound due

to fatigue and abdominal pain from her IBD so we're not the best judge there.

But before her IBD flare she marched in the band earlier this year and went to

school full time with only 2 days absent.

> >

> > We're finding out in the last couple of weeks how much her gut relates to

her body. She was on Lactulose, Senokot, Mag Citrate an Go Lytely for years.

She has been on Miralax off and on for the last 4 years or so and had a

cecostomy tube for constipation when she was younger. Seems strange to be on

the other end of the stooling pattern now.

> >

> > I'd give the viva up to 6 months to get the system completely jacked up and

supplemented. Also try and keep him cleaned out with the Miralax for a week or

so and not just routinely going. It always made a world of difference with

Macey when she felt not quite so full and weighted down.

> > Ursula

> > Mom to (17) and Macey (14)

> > http://www.caringbridge.org/visit/maceyholleman

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: CYNDITK <cyndi@>

> > groups (DOT) com

> > Sent: Tue, December 8, 2009 3:34:49 PM

> > Subject: Feedback on current status/ mito issues?

> >

> >

> >

> > Hi all,

> >

> > My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA,

just started on Vivaglobin. He has suffered from chronic infections, chronic

fatigue, and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

> >

> > We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

> >

> > The best 2 months we had were when he was on Privigen and Miralax- he made

it through that whole time with high energy and few gut problems.

> >

> > We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

> > Could that be a reason he doesn't seem to be responding well? Or does it

take a while to get up to speed with the Viva?

> >

> > I have wondered about Mito issues due to his chronic fatigue- he does not

have seizures and I am unsure if it would be helpful to have to travel to

Cleveland Clinic to get screened for mito.

> >

> > Does anyone have thoughts on this?

> >

> > Thanks,

> > Cyndi

> >

> >

> >

> >

> >

> >

> >

> >

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Hi Barb,

My son is the Lucas who is 14 who lives in Bothell.

I hope your move is going well! Let me know when we can get the boys together.

As I understand it from the pharmacist 6 grams per week is not the " correct "

dose per his body weight- sounds like your son is heavier

and is on the same dose. Do you know why that would be? Is dosage dependent on

severity of symptoms overall, or IgG levels?

best,

Cyndi

>

> Hi Cyndi, Sounds like this has been a tough road. My son is 14 and is about

150lbs and is doing 6gms per week. He is not on Viva but Gammagard SubQ. He is

DOING GREAT! But he has been on infusions since he was 3. First IV then 4 years

ago he started SubQ. It takes a little while to build up in the system but for

>

> us SubQ is fantastic. You do not have the peaks and troughs meaning the

fatigue because his level stays constant rather than fluctuating with the Gamma

globulin running out in 23days. I would say you need to give it at least 6

months to get him stable. How old is your son? My son has had a few breakthrough

infections including pneumonia once but overall his gut issues have subsided,

along with his chronic infections and severe allergy issues. I would just stay

with it and give it a chance to readjust his system. I know it is hard to see

your son so sick but it takes time for it to settle things down.

> BARBIE

>

>

>

>

> ________________________________

> From: CYNDITK <cyndi@...>

>

> Sent: Tue, December 8, 2009 2:34:49 PM

> Subject: Feedback on current status/ mito issues?

>

>

>

> Hi all,

>

> My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just

started on Vivaglobin. He has suffered from chronic infections, chronic fatigue,

and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

>

> We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

>

> The best 2 months we had were when he was on Privigen and Miralax- he made it

through that whole time with high energy and few gut problems.

>

> We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

> Could that be a reason he doesn't seem to be responding well? Or does it take

a while to get up to speed with the Viva?

>

> I have wondered about Mito issues due to his chronic fatigue- he does not have

seizures and I am unsure if it would be helpful to have to travel to Cleveland

Clinic to get screened for mito.

>

> Does anyone have thoughts on this?

>

> Thanks,

> Cyndi

>

>

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

There are SOOOO many factors that determine dosage. Generally about 500mg per Kg

is per 3 weeks is what our doctor told us he goes by. Lucas is very stable right

now. I am VERY pleased. We actually went back to 6gms a few months ago because

his levels were 1300 consistently. He is now doing 5 weekly and his levels are

1100. If your son is not absorbing well in his gut he may be losing some of the

gamma globulin before it can work. Also Lucas has been on infusions since he was

3 so he has had a LONG time to get stable. AND He has been mostly well so is not

using much of it AND he is not being bombarded with LOTS of bugs since he has

been homeschooled the last couple of years and he is right now an only child. So

I think all of these factors effect where he is as far as needs. AND each kid is

different with what their primary issues are. He was retested at 10 and still

did not make any antibodies and his levels were borderline at about 400. Not

terrible

but with empty function not enough. Hope this helps.

YES my things are on the way to Seattle RIGHT NOW!!! I am EXHAUSTED trying to

get the rest of my things out the door. AMAZING HOW MUCH STUFF YOU Accumulate in

only 3 years!! We will be flying in on Saturday so in the next week or so I

would LOVE to get the boys together because Lucas is going to be VERY bored at

Grandmas house.

BARBIE

________________________________

From: CYNDITK <cyndi@...>

Sent: Tue, December 8, 2009 6:59:07 PM

Subject: Re: Feedback on current status/ mito issues?

Hi Barb,

My son is the Lucas who is 14 who lives in Bothell.

I hope your move is going well! Let me know when we can get the boys together.

As I understand it from the pharmacist 6 grams per week is not the " correct "

dose per his body weight- sounds like your son is heavier

and is on the same dose. Do you know why that would be? Is dosage dependent on

severity of symptoms overall, or IgG levels?

best,

Cyndi

>

> Hi Cyndi, Sounds like this has been a tough road. My son is 14 and is about

150lbs and is doing 6gms per week. He is not on Viva but Gammagard SubQ. He is

DOING GREAT! But he has been on infusions since he was 3. First IV then 4 years

ago he started SubQ. It takes a little while to build up in the system but for

>

> us SubQ is fantastic. You do not have the peaks and troughs meaning the

fatigue because his level stays constant rather than fluctuating with the Gamma

globulin running out in 23days. I would say you need to give it at least 6

months to get him stable. How old is your son? My son has had a few breakthrough

infections including pneumonia once but overall his gut issues have subsided,

along with his chronic infections and severe allergy issues. I would just stay

with it and give it a chance to readjust his system. I know it is hard to see

your son so sick but it takes time for it to settle things down.

> BARBIE

>

>

>

>

> ____________ _________ _________ __

> From: CYNDITK <cyndi@...>

> groups (DOT) com

> Sent: Tue, December 8, 2009 2:34:49 PM

> Subject: Feedback on current status/ mito issues?

>

>

>

> Hi all,

>

> My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just

started on Vivaglobin. He has suffered from chronic infections, chronic fatigue,

and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

>

> We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

>

> The best 2 months we had were when he was on Privigen and Miralax- he made it

through that whole time with high energy and few gut problems.

>

> We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

> Could that be a reason he doesn't seem to be responding well? Or does it take

a while to get up to speed with the Viva?

>

> I have wondered about Mito issues due to his chronic fatigue- he does not have

seizures and I am unsure if it would be helpful to have to travel to Cleveland

Clinic to get screened for mito.

>

> Does anyone have thoughts on this?

>

> Thanks,

> Cyndi

>

>

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

There are SOOOO many factors that determine dosage. Generally about 500mg per Kg

is per 3 weeks is what our doctor told us he goes by. Lucas is very stable right

now. I am VERY pleased. We actually went back to 6gms a few months ago because

his levels were 1300 consistently. He is now doing 5 weekly and his levels are

1100. If your son is not absorbing well in his gut he may be losing some of the

gamma globulin before it can work. Also Lucas has been on infusions since he was

3 so he has had a LONG time to get stable. AND He has been mostly well so is not

using much of it AND he is not being bombarded with LOTS of bugs since he has

been homeschooled the last couple of years and he is right now an only child. So

I think all of these factors effect where he is as far as needs. AND each kid is

different with what their primary issues are. He was retested at 10 and still

did not make any antibodies and his levels were borderline at about 400. Not

terrible

but with empty function not enough. Hope this helps.

YES my things are on the way to Seattle RIGHT NOW!!! I am EXHAUSTED trying to

get the rest of my things out the door. AMAZING HOW MUCH STUFF YOU Accumulate in

only 3 years!! We will be flying in on Saturday so in the next week or so I

would LOVE to get the boys together because Lucas is going to be VERY bored at

Grandmas house.

BARBIE

________________________________

From: CYNDITK <cyndi@...>

Sent: Tue, December 8, 2009 6:59:07 PM

Subject: Re: Feedback on current status/ mito issues?

Hi Barb,

My son is the Lucas who is 14 who lives in Bothell.

I hope your move is going well! Let me know when we can get the boys together.

As I understand it from the pharmacist 6 grams per week is not the " correct "

dose per his body weight- sounds like your son is heavier

and is on the same dose. Do you know why that would be? Is dosage dependent on

severity of symptoms overall, or IgG levels?

best,

Cyndi

>

> Hi Cyndi, Sounds like this has been a tough road. My son is 14 and is about

150lbs and is doing 6gms per week. He is not on Viva but Gammagard SubQ. He is

DOING GREAT! But he has been on infusions since he was 3. First IV then 4 years

ago he started SubQ. It takes a little while to build up in the system but for

>

> us SubQ is fantastic. You do not have the peaks and troughs meaning the

fatigue because his level stays constant rather than fluctuating with the Gamma

globulin running out in 23days. I would say you need to give it at least 6

months to get him stable. How old is your son? My son has had a few breakthrough

infections including pneumonia once but overall his gut issues have subsided,

along with his chronic infections and severe allergy issues. I would just stay

with it and give it a chance to readjust his system. I know it is hard to see

your son so sick but it takes time for it to settle things down.

> BARBIE

>

>

>

>

> ____________ _________ _________ __

> From: CYNDITK <cyndi@...>

> groups (DOT) com

> Sent: Tue, December 8, 2009 2:34:49 PM

> Subject: Feedback on current status/ mito issues?

>

>

>

> Hi all,

>

> My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just

started on Vivaglobin. He has suffered from chronic infections, chronic fatigue,

and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

>

> We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

>

> The best 2 months we had were when he was on Privigen and Miralax- he made it

through that whole time with high energy and few gut problems.

>

> We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

> Could that be a reason he doesn't seem to be responding well? Or does it take

a while to get up to speed with the Viva?

>

> I have wondered about Mito issues due to his chronic fatigue- he does not have

seizures and I am unsure if it would be helpful to have to travel to Cleveland

Clinic to get screened for mito.

>

> Does anyone have thoughts on this?

>

> Thanks,

> Cyndi

>

>

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

There are SOOOO many factors that determine dosage. Generally about 500mg per Kg

is per 3 weeks is what our doctor told us he goes by. Lucas is very stable right

now. I am VERY pleased. We actually went back to 6gms a few months ago because

his levels were 1300 consistently. He is now doing 5 weekly and his levels are

1100. If your son is not absorbing well in his gut he may be losing some of the

gamma globulin before it can work. Also Lucas has been on infusions since he was

3 so he has had a LONG time to get stable. AND He has been mostly well so is not

using much of it AND he is not being bombarded with LOTS of bugs since he has

been homeschooled the last couple of years and he is right now an only child. So

I think all of these factors effect where he is as far as needs. AND each kid is

different with what their primary issues are. He was retested at 10 and still

did not make any antibodies and his levels were borderline at about 400. Not

terrible

but with empty function not enough. Hope this helps.

YES my things are on the way to Seattle RIGHT NOW!!! I am EXHAUSTED trying to

get the rest of my things out the door. AMAZING HOW MUCH STUFF YOU Accumulate in

only 3 years!! We will be flying in on Saturday so in the next week or so I

would LOVE to get the boys together because Lucas is going to be VERY bored at

Grandmas house.

BARBIE

________________________________

From: CYNDITK <cyndi@...>

Sent: Tue, December 8, 2009 6:59:07 PM

Subject: Re: Feedback on current status/ mito issues?

Hi Barb,

My son is the Lucas who is 14 who lives in Bothell.

I hope your move is going well! Let me know when we can get the boys together.

As I understand it from the pharmacist 6 grams per week is not the " correct "

dose per his body weight- sounds like your son is heavier

and is on the same dose. Do you know why that would be? Is dosage dependent on

severity of symptoms overall, or IgG levels?

best,

Cyndi

>

> Hi Cyndi, Sounds like this has been a tough road. My son is 14 and is about

150lbs and is doing 6gms per week. He is not on Viva but Gammagard SubQ. He is

DOING GREAT! But he has been on infusions since he was 3. First IV then 4 years

ago he started SubQ. It takes a little while to build up in the system but for

>

> us SubQ is fantastic. You do not have the peaks and troughs meaning the

fatigue because his level stays constant rather than fluctuating with the Gamma

globulin running out in 23days. I would say you need to give it at least 6

months to get him stable. How old is your son? My son has had a few breakthrough

infections including pneumonia once but overall his gut issues have subsided,

along with his chronic infections and severe allergy issues. I would just stay

with it and give it a chance to readjust his system. I know it is hard to see

your son so sick but it takes time for it to settle things down.

> BARBIE

>

>

>

>

> ____________ _________ _________ __

> From: CYNDITK <cyndi@...>

> groups (DOT) com

> Sent: Tue, December 8, 2009 2:34:49 PM

> Subject: Feedback on current status/ mito issues?

>

>

>

> Hi all,

>

> My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just

started on Vivaglobin. He has suffered from chronic infections, chronic fatigue,

and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

>

> We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

>

> The best 2 months we had were when he was on Privigen and Miralax- he made it

through that whole time with high energy and few gut problems.

>

> We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

> Could that be a reason he doesn't seem to be responding well? Or does it take

a while to get up to speed with the Viva?

>

> I have wondered about Mito issues due to his chronic fatigue- he does not have

seizures and I am unsure if it would be helpful to have to travel to Cleveland

Clinic to get screened for mito.

>

> Does anyone have thoughts on this?

>

> Thanks,

> Cyndi

>

>

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

We gave her Phenergan for years for nausea but recently it has started losing

it effect so we give her Zofran now.

Unfortunately Macey is on hospital homebound.  She would fight tooth and nail

if she had the energy to go back to school.  Going to homebound meant having

to leave the band and school activities because she didn't have the energy to do

them or couldn't stay out of the bathroom long enough to get on the

practice field.  She has had a bad week pain wise and bathroom trips are up. 

Her homebound instructor came out yesterday and was only able to keep her at

the table for 2 of the 3 hours before she couldn't sit up anymore. She still

text messages some with a few friends but I'm not even sure her laptop is

charged.

It's actually very unnerving how quickly she's gone downhill.  I hope her scope

Friday shows us what we need to know and we can get the stronger meds started.

 Ursula

Mom to (17) and Macey (14)

http://www.caringbridge.org/visit/maceyholleman

________________________________

From: CYNDITK <cyndi@...>

Sent: Tue, December 8, 2009 7:55:08 PM

Subject: Re: Feedback on current status/ mito issues?

 

Thanks for sharing your story Ursula. Also thanks for the tips on Miralax, we'll

try that.

With my son it went the other way-chronic diarreah for all of early childhood

that gradually turned to constipation as he got older-now its been constipation,

nausea for the last 4 years, even with IG therapy, although he has started

growing and gaining weight on IG, and the nausea has mostly gone away.

I'm so sorry to hear of Macey's difficulties. I know how difficult the pain and

fatigue can be. I hope she is enjoying homeschooling and has lots of

relationships online!

> >

> > the viva does take awhile because basically you're trickling in a little

each week. My daughter is 14, 106 lbs and takes 8 gms per week. She's been on it

4 years and carries a trough around 1100. She is on hospital homebound due to

fatigue and abdominal pain from her IBD so we're not the best judge there. But

before her IBD flare she marched in the band earlier this year and went to

school full time with only 2 days absent.

> >

> > We're finding out in the last couple of weeks how much her gut relates to

her body. She was on Lactulose, Senokot, Mag Citrate an Go Lytely for years. She

has been on Miralax off and on for the last 4 years or so and had a cecostomy

tube for constipation when she was younger. Seems strange to be on the other end

of the stooling pattern now.

> >

> > I'd give the viva up to 6 months to get the system completely jacked up and

supplemented. Also try and keep him cleaned out with the Miralax for a week or

so and not just routinely going. It always made a world of difference with Macey

when she felt not quite so full and weighted down.

> > Ursula

> > Mom to (17) and Macey (14)

> > http://www.caringbr idge.org/ visit/maceyholle man

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: CYNDITK <cyndi@>

> > groups (DOT) com

> > Sent: Tue, December 8, 2009 3:34:49 PM

> > Subject: Feedback on current status/ mito issues?

> >

> >

> >

> > Hi all,

> >

> > My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA,

just started on Vivaglobin. He has suffered from chronic infections, chronic

fatigue, and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

> >

> > We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

> >

> > The best 2 months we had were when he was on Privigen and Miralax- he made

it through that whole time with high energy and few gut problems.

> >

> > We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

> > Could that be a reason he doesn't seem to be responding well? Or does it

take a while to get up to speed with the Viva?

> >

> > I have wondered about Mito issues due to his chronic fatigue- he does not

have seizures and I am unsure if it would be helpful to have to travel to

Cleveland Clinic to get screened for mito.

> >

> > Does anyone have thoughts on this?

> >

> > Thanks,

> > Cyndi

> >

> >

> >

> >

> >

> >

> >

> >

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

We gave her Phenergan for years for nausea but recently it has started losing

it effect so we give her Zofran now.

Unfortunately Macey is on hospital homebound.  She would fight tooth and nail

if she had the energy to go back to school.  Going to homebound meant having

to leave the band and school activities because she didn't have the energy to do

them or couldn't stay out of the bathroom long enough to get on the

practice field.  She has had a bad week pain wise and bathroom trips are up. 

Her homebound instructor came out yesterday and was only able to keep her at

the table for 2 of the 3 hours before she couldn't sit up anymore. She still

text messages some with a few friends but I'm not even sure her laptop is

charged.

It's actually very unnerving how quickly she's gone downhill.  I hope her scope

Friday shows us what we need to know and we can get the stronger meds started.

 Ursula

Mom to (17) and Macey (14)

http://www.caringbridge.org/visit/maceyholleman

________________________________

From: CYNDITK <cyndi@...>

Sent: Tue, December 8, 2009 7:55:08 PM

Subject: Re: Feedback on current status/ mito issues?

 

Thanks for sharing your story Ursula. Also thanks for the tips on Miralax, we'll

try that.

With my son it went the other way-chronic diarreah for all of early childhood

that gradually turned to constipation as he got older-now its been constipation,

nausea for the last 4 years, even with IG therapy, although he has started

growing and gaining weight on IG, and the nausea has mostly gone away.

I'm so sorry to hear of Macey's difficulties. I know how difficult the pain and

fatigue can be. I hope she is enjoying homeschooling and has lots of

relationships online!

> >

> > the viva does take awhile because basically you're trickling in a little

each week. My daughter is 14, 106 lbs and takes 8 gms per week. She's been on it

4 years and carries a trough around 1100. She is on hospital homebound due to

fatigue and abdominal pain from her IBD so we're not the best judge there. But

before her IBD flare she marched in the band earlier this year and went to

school full time with only 2 days absent.

> >

> > We're finding out in the last couple of weeks how much her gut relates to

her body. She was on Lactulose, Senokot, Mag Citrate an Go Lytely for years. She

has been on Miralax off and on for the last 4 years or so and had a cecostomy

tube for constipation when she was younger. Seems strange to be on the other end

of the stooling pattern now.

> >

> > I'd give the viva up to 6 months to get the system completely jacked up and

supplemented. Also try and keep him cleaned out with the Miralax for a week or

so and not just routinely going. It always made a world of difference with Macey

when she felt not quite so full and weighted down.

> > Ursula

> > Mom to (17) and Macey (14)

> > http://www.caringbr idge.org/ visit/maceyholle man

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: CYNDITK <cyndi@>

> > groups (DOT) com

> > Sent: Tue, December 8, 2009 3:34:49 PM

> > Subject: Feedback on current status/ mito issues?

> >

> >

> >

> > Hi all,

> >

> > My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA,

just started on Vivaglobin. He has suffered from chronic infections, chronic

fatigue, and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

> >

> > We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

> >

> > The best 2 months we had were when he was on Privigen and Miralax- he made

it through that whole time with high energy and few gut problems.

> >

> > We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

> > Could that be a reason he doesn't seem to be responding well? Or does it

take a while to get up to speed with the Viva?

> >

> > I have wondered about Mito issues due to his chronic fatigue- he does not

have seizures and I am unsure if it would be helpful to have to travel to

Cleveland Clinic to get screened for mito.

> >

> > Does anyone have thoughts on this?

> >

> > Thanks,

> > Cyndi

> >

> >

> >

> >

> >

> >

> >

> >

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

We gave her Phenergan for years for nausea but recently it has started losing

it effect so we give her Zofran now.

Unfortunately Macey is on hospital homebound.  She would fight tooth and nail

if she had the energy to go back to school.  Going to homebound meant having

to leave the band and school activities because she didn't have the energy to do

them or couldn't stay out of the bathroom long enough to get on the

practice field.  She has had a bad week pain wise and bathroom trips are up. 

Her homebound instructor came out yesterday and was only able to keep her at

the table for 2 of the 3 hours before she couldn't sit up anymore. She still

text messages some with a few friends but I'm not even sure her laptop is

charged.

It's actually very unnerving how quickly she's gone downhill.  I hope her scope

Friday shows us what we need to know and we can get the stronger meds started.

 Ursula

Mom to (17) and Macey (14)

http://www.caringbridge.org/visit/maceyholleman

________________________________

From: CYNDITK <cyndi@...>

Sent: Tue, December 8, 2009 7:55:08 PM

Subject: Re: Feedback on current status/ mito issues?

 

Thanks for sharing your story Ursula. Also thanks for the tips on Miralax, we'll

try that.

With my son it went the other way-chronic diarreah for all of early childhood

that gradually turned to constipation as he got older-now its been constipation,

nausea for the last 4 years, even with IG therapy, although he has started

growing and gaining weight on IG, and the nausea has mostly gone away.

I'm so sorry to hear of Macey's difficulties. I know how difficult the pain and

fatigue can be. I hope she is enjoying homeschooling and has lots of

relationships online!

> >

> > the viva does take awhile because basically you're trickling in a little

each week. My daughter is 14, 106 lbs and takes 8 gms per week. She's been on it

4 years and carries a trough around 1100. She is on hospital homebound due to

fatigue and abdominal pain from her IBD so we're not the best judge there. But

before her IBD flare she marched in the band earlier this year and went to

school full time with only 2 days absent.

> >

> > We're finding out in the last couple of weeks how much her gut relates to

her body. She was on Lactulose, Senokot, Mag Citrate an Go Lytely for years. She

has been on Miralax off and on for the last 4 years or so and had a cecostomy

tube for constipation when she was younger. Seems strange to be on the other end

of the stooling pattern now.

> >

> > I'd give the viva up to 6 months to get the system completely jacked up and

supplemented. Also try and keep him cleaned out with the Miralax for a week or

so and not just routinely going. It always made a world of difference with Macey

when she felt not quite so full and weighted down.

> > Ursula

> > Mom to (17) and Macey (14)

> > http://www.caringbr idge.org/ visit/maceyholle man

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: CYNDITK <cyndi@>

> > groups (DOT) com

> > Sent: Tue, December 8, 2009 3:34:49 PM

> > Subject: Feedback on current status/ mito issues?

> >

> >

> >

> > Hi all,

> >

> > My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA,

just started on Vivaglobin. He has suffered from chronic infections, chronic

fatigue, and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

> >

> > We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

> >

> > The best 2 months we had were when he was on Privigen and Miralax- he made

it through that whole time with high energy and few gut problems.

> >

> > We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

> > Could that be a reason he doesn't seem to be responding well? Or does it

take a while to get up to speed with the Viva?

> >

> > I have wondered about Mito issues due to his chronic fatigue- he does not

have seizures and I am unsure if it would be helpful to have to travel to

Cleveland Clinic to get screened for mito.

> >

> > Does anyone have thoughts on this?

> >

> > Thanks,

> > Cyndi

> >

> >

> >

> >

> >

> >

> >

> >

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Mito is usually not a self referral....another specialist like Metabolics or

Neurology would do the referring.( although other specialists can)... Lab work,

symptoms, would be indicative of a visit to Clevland Clinic with Dr Cohen.. Good

Luck..

>

>

> Hi all,

>

>

> My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just

started on Vivaglobin. He has suffered from chronic infections, chronic fatigue,

and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

>

> We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

>

> The best 2 months we had were when he was on Privigen and Miralax- he made it

through that whole time with high energy and few gut problems.

>

> We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

> Could that be a reason he doesn't seem to be responding well? Or does it take

a while to get up to speed with the Viva?

>

> I have wondered about Mito issues due to his chronic fatigue- he does not have

seizures and I am unsure if it would be helpful to have to travel to Cleveland

Clinic to get screened for mito.

>

>

> Does anyone have thoughts on this?

>

> Thanks,

> Cyndi

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Mito is usually not a self referral....another specialist like Metabolics or

Neurology would do the referring.( although other specialists can)... Lab work,

symptoms, would be indicative of a visit to Clevland Clinic with Dr Cohen.. Good

Luck..

>

>

> Hi all,

>

>

> My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA, just

started on Vivaglobin. He has suffered from chronic infections, chronic fatigue,

and recurrent GI issues including nausea, constipation, and severe food

intolerance. We did IVIG for 1 year, and he did well on Privigen, not well on

Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month where

he was fully functional.

>

> We've done Viva for 1 month now. He has 1-2 days of fatigue right after his

infusion. Is this typical? He still is by no means able to live a " normal " life-

he does not have the energy to attend school and activities regularly due to

some issue or other-his gut, feeling tired/lousy, headache. Between the time we

were switching from IVIG to Viva he got an infection- in the 1 week he was off

therapy. Then he had to go on antibiotics, and he hasn't been doing well since.

He's been tired and had nausea on and off since he got off the antibiotics.

>

> The best 2 months we had were when he was on Privigen and Miralax- he made it

through that whole time with high energy and few gut problems.

>

> We switched to Viva because Dr suggested it to help with fatigue. I also was

excited about doing it because of what I heard from other parents about it

helping fatigue. I have been told that his initial dose is low- 6g weekly for

120lb.

> Could that be a reason he doesn't seem to be responding well? Or does it take

a while to get up to speed with the Viva?

>

> I have wondered about Mito issues due to his chronic fatigue- he does not have

seizures and I am unsure if it would be helpful to have to travel to Cleveland

Clinic to get screened for mito.

>

>

> Does anyone have thoughts on this?

>

> Thanks,

> Cyndi

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

I'm not sure I understand your question about mito. What is going on that

makes you think mito? Everything you described sounds like how a lot of the

families on here with PID describe their kids before being on Ig therapy for

a while. I was trying to figure out if I was missing something else.

While I've never heard of " screening " for mito, there are some initial

testing that can be done without traveling somewhere. Having all of that be

normal doesn't rule out mito. Pursuing a diagnosis is a LONG process and

there are no guarantees. My kids fit the mito criteria (They have low

carnitine, low coQ10, hypotonia affecting skeletal muscles and respiratory

muscles, decreased respiratory drive, liver disease, etc - only one has

seizures since you mentioned that - but not everyone with mito looks like

this because there is so much variability. I believe they say that having

multi-system involvement is one clue. Their respiratory issues, which

require BIPAP ventilation for the older 2 and Meredith is on oxygen, are a

common finding with mito as is liver disease. Immune deficiency has been

seen in some mito kids.) and are being treated as though they do have mito.

will be having a muscle biopsy the first of the year so we can be

definitive but even those have a 30% false negative rate so our doctors have

said they believe that all 3 have mito but if we could prove it, it would

help with insurance coverage, etc down the road but won't change the

treatment plan we already have in place.

Mom to 4, 3 with mito causing secondary ID in 2 (baby is only 4 months and

still getting breastmilk so we will watch her closely as she gets older)

>

>

> Hi all,

>

>

> My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA,

just started on Vivaglobin. He has suffered from chronic infections, chronic

fatigue, and recurrent GI issues including nausea, constipation, and severe

food intolerance. We did IVIG for 1 year, and he did well on Privigen, not

well on Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month

where he was fully functional.

>

> We've done Viva for 1 month now. He has 1-2 days of fatigue right after

his infusion. Is this typical? He still is by no means able to live a

" normal " life- he does not have the energy to attend school and activities

regularly due to some issue or other-his gut, feeling tired/lousy, headache.

Between the time we were switching from IVIG to Viva he got an infection- in

the 1 week he was off therapy. Then he had to go on antibiotics, and he

hasn't been doing well since. He's been tired and had nausea on and off

since he got off the antibiotics.

>

> The best 2 months we had were when he was on Privigen and Miralax- he made

it through that whole time with high energy and few gut problems.

>

> We switched to Viva because Dr suggested it to help with fatigue. I also

was excited about doing it because of what I heard from other parents about

it helping fatigue. I have been told that his initial dose is low- 6g weekly

for 120lb.

> Could that be a reason he doesn't seem to be responding well? Or does it

take a while to get up to speed with the Viva?

>

> I have wondered about Mito issues due to his chronic fatigue- he does not

have seizures and I am unsure if it would be helpful to have to travel to

Cleveland Clinic to get screened for mito.

>

>

> Does anyone have thoughts on this?

>

> Thanks,

> Cyndi

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

I'm not sure I understand your question about mito. What is going on that

makes you think mito? Everything you described sounds like how a lot of the

families on here with PID describe their kids before being on Ig therapy for

a while. I was trying to figure out if I was missing something else.

While I've never heard of " screening " for mito, there are some initial

testing that can be done without traveling somewhere. Having all of that be

normal doesn't rule out mito. Pursuing a diagnosis is a LONG process and

there are no guarantees. My kids fit the mito criteria (They have low

carnitine, low coQ10, hypotonia affecting skeletal muscles and respiratory

muscles, decreased respiratory drive, liver disease, etc - only one has

seizures since you mentioned that - but not everyone with mito looks like

this because there is so much variability. I believe they say that having

multi-system involvement is one clue. Their respiratory issues, which

require BIPAP ventilation for the older 2 and Meredith is on oxygen, are a

common finding with mito as is liver disease. Immune deficiency has been

seen in some mito kids.) and are being treated as though they do have mito.

will be having a muscle biopsy the first of the year so we can be

definitive but even those have a 30% false negative rate so our doctors have

said they believe that all 3 have mito but if we could prove it, it would

help with insurance coverage, etc down the road but won't change the

treatment plan we already have in place.

Mom to 4, 3 with mito causing secondary ID in 2 (baby is only 4 months and

still getting breastmilk so we will watch her closely as she gets older)

>

>

> Hi all,

>

>

> My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA,

just started on Vivaglobin. He has suffered from chronic infections, chronic

fatigue, and recurrent GI issues including nausea, constipation, and severe

food intolerance. We did IVIG for 1 year, and he did well on Privigen, not

well on Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month

where he was fully functional.

>

> We've done Viva for 1 month now. He has 1-2 days of fatigue right after

his infusion. Is this typical? He still is by no means able to live a

" normal " life- he does not have the energy to attend school and activities

regularly due to some issue or other-his gut, feeling tired/lousy, headache.

Between the time we were switching from IVIG to Viva he got an infection- in

the 1 week he was off therapy. Then he had to go on antibiotics, and he

hasn't been doing well since. He's been tired and had nausea on and off

since he got off the antibiotics.

>

> The best 2 months we had were when he was on Privigen and Miralax- he made

it through that whole time with high energy and few gut problems.

>

> We switched to Viva because Dr suggested it to help with fatigue. I also

was excited about doing it because of what I heard from other parents about

it helping fatigue. I have been told that his initial dose is low- 6g weekly

for 120lb.

> Could that be a reason he doesn't seem to be responding well? Or does it

take a while to get up to speed with the Viva?

>

> I have wondered about Mito issues due to his chronic fatigue- he does not

have seizures and I am unsure if it would be helpful to have to travel to

Cleveland Clinic to get screened for mito.

>

>

> Does anyone have thoughts on this?

>

> Thanks,

> Cyndi

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Hi ,

His carnitine is normal and he does not have any other labwork which would

indicate mito. Why I consider it at all is that he has serious gut issues,

chronic fatigue, and physical weakness. He has been on IG for 1 year four months

and is still not anywhere near stable. Yes this is the experience of others on

this list, and also many others are stable and able to attend activities

regularly. My son has regular periods- we call them crashes- where he does not

get out of the house for weeks at a time because he feels tired and his gut

freezes up. And then there are some weeks where he functions well and can go

out. I know that there are other issues going on with him besides PIDD- most

likely it's his gut causing the fatigue, but why is his gut so compromised?

Anyhow, I don't know- I am looking for answers.

My son's weakness does not affect his respiratory function at all, but his gut

is affected- he has chronic constipation which seems to be a motility issue.

Thanks for the input.

best,

Cyndi

> >

> >

> > Hi all,

> >

> >

> > My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA,

> just started on Vivaglobin. He has suffered from chronic infections, chronic

> fatigue, and recurrent GI issues including nausea, constipation, and severe

> food intolerance. We did IVIG for 1 year, and he did well on Privigen, not

> well on Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

> afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month

> where he was fully functional.

> >

> > We've done Viva for 1 month now. He has 1-2 days of fatigue right after

> his infusion. Is this typical? He still is by no means able to live a

> " normal " life- he does not have the energy to attend school and activities

> regularly due to some issue or other-his gut, feeling tired/lousy, headache.

> Between the time we were switching from IVIG to Viva he got an infection- in

> the 1 week he was off therapy. Then he had to go on antibiotics, and he

> hasn't been doing well since. He's been tired and had nausea on and off

> since he got off the antibiotics.

> >

> > The best 2 months we had were when he was on Privigen and Miralax- he made

> it through that whole time with high energy and few gut problems.

> >

> > We switched to Viva because Dr suggested it to help with fatigue. I also

> was excited about doing it because of what I heard from other parents about

> it helping fatigue. I have been told that his initial dose is low- 6g weekly

> for 120lb.

> > Could that be a reason he doesn't seem to be responding well? Or does it

> take a while to get up to speed with the Viva?

> >

> > I have wondered about Mito issues due to his chronic fatigue- he does not

> have seizures and I am unsure if it would be helpful to have to travel to

> Cleveland Clinic to get screened for mito.

> >

> >

> > Does anyone have thoughts on this?

> >

> > Thanks,

> > Cyndi

> >

>

>

>

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

This is all also common with kids with PID, my son has never attended schoool

and we actually isolate for 6 months of the year.. no activitiy.

Constipation... was horrible and I know alot of other moms on this board

struggle with this issue as well.

We have been officially dx for a number of years with Mito ( complex 1, LCHAD,

and CPEO another variant of Mito....

The issues with fatigue for the first few years were horrible with trying to get

the right product, dosing, and let his body rest and restore..all immune

related..

Mito was dx after our PID, which was dx at 18 months ....

3 organ systems are a indication..as well as a zillion other things..

It is a dx,, that another doctor will suspect.. and then do some metabolic

studies.. skin biopsy sometimes.. EMG..

It is a lOOONNG process..

best of luck.. hope you do not have to go down that road.

Kathleen

> > >

> > >

> > > Hi all,

> > >

> > >

> > > My son is 14, diagnosed with IgG subclass deficiency 2 and 4 and low IgA,

> > just started on Vivaglobin. He has suffered from chronic infections, chronic

> > fatigue, and recurrent GI issues including nausea, constipation, and severe

> > food intolerance. We did IVIG for 1 year, and he did well on Privigen, not

> > well on Gamunex. On Privigen he had side effects from the IVIG for 3-4 days

> > afterward-severe fatigue, headaches. He had about 2 1/2-3 weeks per month

> > where he was fully functional.

> > >

> > > We've done Viva for 1 month now. He has 1-2 days of fatigue right after

> > his infusion. Is this typical? He still is by no means able to live a

> > " normal " life- he does not have the energy to attend school and activities

> > regularly due to some issue or other-his gut, feeling tired/lousy, headache.

> > Between the time we were switching from IVIG to Viva he got an infection- in

> > the 1 week he was off therapy. Then he had to go on antibiotics, and he

> > hasn't been doing well since. He's been tired and had nausea on and off

> > since he got off the antibiotics.

> > >

> > > The best 2 months we had were when he was on Privigen and Miralax- he made

> > it through that whole time with high energy and few gut problems.

> > >

> > > We switched to Viva because Dr suggested it to help with fatigue. I also

> > was excited about doing it because of what I heard from other parents about

> > it helping fatigue. I have been told that his initial dose is low- 6g weekly

> > for 120lb.

> > > Could that be a reason he doesn't seem to be responding well? Or does it

> > take a while to get up to speed with the Viva?

> > >

> > > I have wondered about Mito issues due to his chronic fatigue- he does not

> > have seizures and I am unsure if it would be helpful to have to travel to

> > Cleveland Clinic to get screened for mito.

> > >

> > >

> > > Does anyone have thoughts on this?

> > >

> > > Thanks,

> > > Cyndi

> > >

> >

> >

> >

> >

> >

> >

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
 Share
Go to topic listing
×
×
  • Create New...