Re: First day with gammanex

[Guest guest]

In a message dated 3/31/2005 10:25:32 A.M. Eastern Standard Time,

pmork@... writes:

We are doing our first infusion with gammanex. I hate change! Rebekah had

a lot of trouble when we first started to infuse, so I'm a bit nervous

today.

Pam, my daughter had a LOT of trouble when she first started IVIG. It got

worse over time! The doctor then changed her to Gamunex and she did great, and

continues to do so. They still go slow and pre medicate her. All she gets is

a headache and sleeps for a couple of days after, then she is fine. I hope

that Rebekah does good on it too. I will be praying for her.

With the shortage I am worrying about them not having Gamunex! Last month

the hospital pharmacy tried to give her something else and the doctor refused

and they did manage to get it for her. I was scared to death! She is finally

making progress! Her weight is up to 92 now. She was stuck at 86. It looks to

me like she has gained more we shall see next IVIG. She is 5 ft 4 inches

tall. She was below the 5th percentile. She still get sick but antibiotics take

care of it, no hospital stays for months now!! She still has a great deal of

headaches and fatigue I pray that will get better also over time. I am very

happy and thankful how she is progressing. Any suggestions on her headaches?

They are almost daily.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

In a message dated 3/31/2005 3:17:53 P.M. Eastern Standard Time,

pmork@... writes:

We are halfway through the infusion and it is going great! She is having

fewer headaches that usual! Hurrah!

That is GREAT news! Glad you let us know how it is was going.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

We are halfway through the infusion and it is going great! She is having

fewer headaches that usual! Hurrah!

The nurse if here all day and she and I planned out who would call an

ambulance and who would start the epipens if something happened. But,

obviously nothing did! Thank God!

So far, I'm loving gammanex! I've heard that there is a shortage of all

IVIG products currently, especially 2.5 gram vials.

Pam

Re: First day with gammanex

In a message dated 3/31/2005 10:25:32 A.M. Eastern Standard Time,

pmork@... writes:

We are doing our first infusion with gammanex. I hate change! Rebekah

had

a lot of trouble when we first started to infuse, so I'm a bit nervous

today.

Pam, my daughter had a LOT of trouble when she first started IVIG. It got

worse over time! The doctor then changed her to Gamunex and she did great,

and

continues to do so. They still go slow and pre medicate her. All she gets

is

a headache and sleeps for a couple of days after, then she is fine. I hope

that Rebekah does good on it too. I will be praying for her.

[Guest guest]

We are halfway through the infusion and it is going great! She is having

fewer headaches that usual! Hurrah!

The nurse if here all day and she and I planned out who would call an

ambulance and who would start the epipens if something happened. But,

obviously nothing did! Thank God!

So far, I'm loving gammanex! I've heard that there is a shortage of all

IVIG products currently, especially 2.5 gram vials.

Pam

Re: First day with gammanex

In a message dated 3/31/2005 10:25:32 A.M. Eastern Standard Time,

pmork@... writes:

We are doing our first infusion with gammanex. I hate change! Rebekah

had

a lot of trouble when we first started to infuse, so I'm a bit nervous

today.

Pam, my daughter had a LOT of trouble when she first started IVIG. It got

worse over time! The doctor then changed her to Gamunex and she did great,

and

continues to do so. They still go slow and pre medicate her. All she gets

is

a headache and sleeps for a couple of days after, then she is fine. I hope

that Rebekah does good on it too. I will be praying for her.

[Guest guest]

In a message dated 3/31/2005 7:25:33 AM Pacific Standard Time,

pmork@... writes:

But, I hate change (did I mention that yet) and, although my brain

understands that changing to gammanex is probably going to be better in the

long run, my heart dreads returning to the headaches and pains and vomiting.

Pam,

Having just gone through this very scenario, I'm dreading it for you, too!!

I'll be praying for the best possible outcome.

Bri had his fourth IVIG today. So far, so good!!

Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

transplant (2003), asthma, Carnitine deficiency, GERD

[Guest guest]

In a message dated 4/1/2005 8:35:11 A.M. Eastern Standard Time,

pmork@... writes:

She has no headache at all at bedtime, which is significantly

different. And she got up in a good mood. So far, this looks very, very

good!

Pam that is awesome!! I am so happy for her!!

Janet

[Guest guest]

In a message dated 3/31/2005 9:44:09 P.M. Eastern Standard Time,

sassykay59@... writes:

Bri had his fourth IVIG today. So far, so good!!

Sandi that is great!! Did they do anything different? I been thinking about

you two.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

Rebekah did great yesterday. The nurse did stay all day, but that was just

a precaution. She has no headache at all at bedtime, which is significantly

different. And she got up in a good mood. So far, this looks very, very

good!

Pam

wife to (18 years)

mother to , 11, Hannah, 8, Rebekah, 5, and Leah, 3

Re: First day with gammanex

In a message dated 3/31/2005 7:25:33 AM Pacific Standard Time,

pmork@... writes:

But, I hate change (did I mention that yet) and, although my brain

understands that changing to gammanex is probably going to be better in the

long run, my heart dreads returning to the headaches and pains and vomiting.

Pam,

Having just gone through this very scenario, I'm dreading it for you,

too!!

I'll be praying for the best possible outcome.

Bri had his fourth IVIG today. So far, so good!!

Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

transplant (2003), asthma, Carnitine deficiency, GERD

[Guest guest]

Woo Hoo Pam! Glad it went well. I'm also happy that you didn't have to

deal with you know who.......Now that I've started in PICU people have

asked why I don't see him. I explained that had a severe reaction

to the IVIG and my ped wasn't comfortable with it and asked for a second

opinion. Since he is the primary care provider, I needed to follow his

recommendations and go get the second opinion.

I am still waiting to hear on approval for our next appt. May just go

and then file an appeal with Medicaid.....Have a call into DR. K in MPLS

to see if he has had time to send a letter....Hope to hear from him

today.

Have you guys seen the DVD Living with Hope???????? I got a copy from

Kathy as will be doing some work with Plasma BioLife to raise awareness

of this disease.....Even tho we don't have a specific diagnosis for

, we do know that he has a primary immune deficiency. Dr. S looked

good on there and is a classic case in that you can identify that

the immune system is broke, but difficult to diagnosis exactly what.

According to the article that Dr. K sent my ped, if I have understood it

right, which is highly doubtful as it was very technical, it looks like

may end up with the diagnosis of CVID.....Low immunoglobins along

with the NK cell defect. So, we may eventually end up back on

IVIG...........He has done relatively well this winter and been on

antibiotics a few times, but no hospitalizations....igh on the other

hand has had one sinus infection after another.....I just think it never

got cleared up. Her motor stuff is declining again but we haven't been

good about the home therapy program, so will try to get that implemented

and set up an appt with my ped to review what the physical medicine

doctor said. If things stay the way they are, I want to pursue the

neurodevelopmental testing to see where she is at....It has been really

frustrating dealing with her lately, as safety is such an issue. I am

going to push the school district for busing due to 's needs and

her safety issues.......they said since we are in our home school

district, that they don't need to provide busing.....but I think that is

false. I'm going to attend a workshop in Minot about all the changes in

IDEA the end of this month....that may give me some insight also.

Well, hope the day continues to go well. I need to get my shower done.

I'm picking Kaitlyn up at 11 so she can go to Grandforks for a BB

tourney. Libby leaves for Dickinson tomorrow at 6:30, I leave for Fargo

at 3.....I work all weekend...they have me scheduled 11 shifts this

month (3 extra) the money will be nice, but I'm tired.....Maybe I'll

give you a call if I have time when I wake up tomorrow. Take care.

Re: First day with gammanex

In a message dated 3/31/2005 7:25:33 AM Pacific Standard Time,

pmork@... writes:

But, I hate change (did I mention that yet) and, although my brain

understands that changing to gammanex is probably going to be better in

the

long run, my heart dreads returning to the headaches and pains and

vomiting.

Pam,

Having just gone through this very scenario, I'm dreading it for you,

too!!

I'll be praying for the best possible outcome.

Bri had his fourth IVIG today. So far, so good!!

Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

transplant (2003), asthma, Carnitine deficiency, GERD

[Guest guest]

I'm so glad it went well. It has seemed to me that there are fewer problems

with Gammunex. Makes me wonder what the differences are. Wouldn't mind having

that for Sam's Subq infusions. It comes in liquid form, already in the 10%

solution. I have to mix the Gammagard S/D, so it takes a while longer to set

up. Of course, the Gammunex would require a good area of my

refrigerator........ Guess there are pro's and con's to everything.

Hoping Rebekah continues to do well.

God bless,

Wenoka

Re: First day with gammanex

In a message dated 3/31/2005 7:25:33 AM Pacific Standard Time,

pmork@... writes:

But, I hate change (did I mention that yet) and, although my brain

understands that changing to gammanex is probably going to be better in the

long run, my heart dreads returning to the headaches and pains and vomiting.

Pam,

Having just gone through this very scenario, I'm dreading it for you,

too!!

I'll be praying for the best possible outcome.

Bri had his fourth IVIG today. So far, so good!!

Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

transplant (2003), asthma, Carnitine deficiency, GERD

[Guest guest]

What our immuno told us was that gammaguard is lyophalyzed (freeze dried).

When it is mixed in water, it is hard to dissolve and that sometimes the

immunoglobulins stay as dimer or trimers, which are biologically inactive

and can cause the side effects. Gammanex is never freeze-dried, so the

quality of the immunoglobulins should be better and the patient should be

more comfortable. Our gammanex was diluted to a 5% solution. Believe me,

he had to give us really good reasons for why we should change products!

IVIG wasn't so uncomfortable that we couldn't deal with it, and her health

has been fabulously better on it. I wasn't terribly interested in changing.

But the bit about the dimers and trimers made a lot of sense, so I agreed to

change.

So far today, we went to a playland and on a fossil dig and Rebekah reports

no headaches and appears to feel pretty good.

Pam

Re: First day with gammanex

I'm so glad it went well. It has seemed to me that there are fewer problems

with Gammunex. Makes me wonder what the differences are. Wouldn't mind

having that for Sam's Subq infusions. It comes in liquid form, already in

the 10% solution. I have to mix the Gammagard S/D, so it takes a while

longer to set up. Of course, the Gammunex would require a good area of my

refrigerator........ Guess there are pro's and con's to everything.

Hoping Rebekah continues to do well.

God bless,

[Guest guest]

that is great Pam, glad things are looking up.

mom to

Re: First day with gammanex

In a message dated 3/31/2005 7:25:33 AM Pacific Standard Time,

pmork@...<mailto:pmork@...> writes:

But, I hate change (did I mention that yet) and, although my brain

understands that changing to gammanex is probably going to be better in the

long run, my heart dreads returning to the headaches and pains and vomiting.

Pam,

Having just gone through this very scenario, I'm dreading it for you,

too!!

I'll be praying for the best possible outcome.

Bri had his fourth IVIG today. So far, so good!!

Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

transplant (2003), asthma, Carnitine deficiency, GERD

[Guest guest]

In a message dated 4/1/2005 5:38:07 AM Pacific Standard Time,

BBsmart2@... writes:

She has no headache at all at bedtime, which is significantly

different. And she got up in a good mood. So far, this looks very, very

good!

YAY!!!

Sandi

[Guest guest]

In a message dated 4/1/2005 6:54:42 AM Pacific Standard Time,

BBsmart2@... writes:

Sandi that is great!! Did they do anything different? I been thinking about

you two.

Hi Janet,

We kept the infusion rate low like last time. I told him that I would

refuse to let him run it over 70 and apparently he took me seriously. Bri is

doing great. This time, no headache. He's not hungry, but he's drinking lots

so

I can live with that for a day.

Thanks

Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

transplant (2003), asthma, Carnitine deficiency, GERD