Re: newly diagnosed 5 year old

[Guest guest]

Who does she see at NIH? Are you familiar with Dr Fuss?

Being on steroids could always complicate this situation though. How much is

she on now ?

Ursula

Mom to Macey (15, CVID)

On Mar 16, 2011, at 8:13 PM, " karen " <kksilk526@...> wrote:

> Hi all,

> I have a daughter who just turned 5. She has had multiple problems and weekly

infections since 3 months old that would last months at a time. Summers are

always better for her. At around 2 1/2 she was diagnosed with TNF-Receptor

Associated periodic syndrome by her immunologist. It is a rare auto-inflammatory

disease which causes high fevers, joint pains, malnutrition, diarrhea, puffy

eyes and fatigue from too much inflammation. She was put on Enbrel injections

that I give her 2 times a week in her belly and legs by her rheumatologist at

home to stop the inflammation, and we also drive 4 hours to the National

Institute of Health every few months. The doctor there is the one who found the

gene for TRAPS in 1998. Finally just recently after upping her to the max of her

medication her fever flares have ceased. However the other problems that she has

had since around 3 months old, which were thought to go hand in hand are still

there. These include frequent bacterial infections, mostly ear and sinus and if

she does get an infection she usually gets a second or third right on top,

sometimes while on antbibiotics. She is always put on 20 days worth or RX

because it takes so long for her to heal. And most of all, about 4 days into her

infection she begins with coughing that gets really bad with wheezing and

chronic chest congestion. She requires about 3 months of prednisone at 50mg high

doses, multiple inhaled steroids and albuterol, to get her symptoms better. She

takes them for so long because low doses do nothing and land her in the hospital

all the time and when we do a 2 week course or prednisone even if the coughing

is better or gone, it comes right back as soon because the infection is still

lingering triggering it. In the past she's been on IV Salumedrol and then oral

pred. for 6 months because it was so bad. Even afterwards, her symptoms still

linger for a looooong time. This could be a total of 3-4 months and she'd get

second and third different infections along the way. Ugh. She really never gets

viral infections, only bacterial, has had a staph infection on her toe from a

mild scratch in a swimming pool,requring 2 IV meds. cellutlitis 2 times on her

thumb that she sucks, and has been hospitalized pretty much all winter since 3

months old for asthma and multiple infections. Her average temp. is 99.6 - 99.8

daily and with RX always goes to 98.6 for some reason.

>

> Her immune system was checked around 2 years old. Things were off, but nothing

severe. The doctor found out she had TRAPS disease, and thought it would all get

better with that RX, so that's where the focus was. The last year she has worn a

mask everywhere she goes because I was sick of her being in the hospital all the

time and on all this prednisone. The last year she's been better because of it,

but can't go to kindergarten that way. She's in preschool 2 times a week this

year and wears a mask. But after her TRAPS had come under control, we took her

mask off at the request of her rheumy who thought that too would be better now.

Less that one week later, she got a simple sinus infection which required 20

days or RX, and got a stomach virus with 104 temp on top and then a chest

infection 4 days after the stomach bug with severe asthma requring 50mg of pred.

for 2months and a short hospital stay. 3 months later she's still constantly

clearing her throught and mildly coughing.

>

> So, now that I recently found out that her TRAPS is seperate from her

infections and lung issues, we went back to her immunologist. He said her

immunoglobulins were low and more importantly were not functioning properly. Her

pneumonia titers were gone as well as her HiB vaccine. She barley has any for

Tetanus either. She had her pneumonia shot re-done yesterday and will follow up

in 4-6 weeks to repeat the titers. He put her on Amoxil 400mg 2 times a day and

talked briefly about IVIG therapy after her titers come back.

>

> This is obviously all new to me and believe me I hope this helps her to not be

sick all the time and not need all this prednisone. I am wondering how familiar

this story sounds to anyone else?? Hopefully it does and some reasurrance that

we are on the right path would be

> a blessing

>

> Any tips on school, IVIG therpy or anything a newly diagnosed child and parent

could benefit from would be greatly appreciated. She said to me, great the

doctor can fix me! Now I won't need any more blood tests. She hates those of

course. I don't know how to break the news to her or make the situation more

tolerable for a child who just turned 5.

>

> Thanks,

>

>

>

>

[Guest guest]

Who does she see at NIH? Are you familiar with Dr Fuss?

Being on steroids could always complicate this situation though. How much is

she on now ?

Ursula

Mom to Macey (15, CVID)

On Mar 16, 2011, at 8:13 PM, " karen " <kksilk526@...> wrote:

> Hi all,

> I have a daughter who just turned 5. She has had multiple problems and weekly

infections since 3 months old that would last months at a time. Summers are

always better for her. At around 2 1/2 she was diagnosed with TNF-Receptor

Associated periodic syndrome by her immunologist. It is a rare auto-inflammatory

disease which causes high fevers, joint pains, malnutrition, diarrhea, puffy

eyes and fatigue from too much inflammation. She was put on Enbrel injections

that I give her 2 times a week in her belly and legs by her rheumatologist at

home to stop the inflammation, and we also drive 4 hours to the National

Institute of Health every few months. The doctor there is the one who found the

gene for TRAPS in 1998. Finally just recently after upping her to the max of her

medication her fever flares have ceased. However the other problems that she has

had since around 3 months old, which were thought to go hand in hand are still

there. These include frequent bacterial infections, mostly ear and sinus and if

she does get an infection she usually gets a second or third right on top,

sometimes while on antbibiotics. She is always put on 20 days worth or RX

because it takes so long for her to heal. And most of all, about 4 days into her

infection she begins with coughing that gets really bad with wheezing and

chronic chest congestion. She requires about 3 months of prednisone at 50mg high

doses, multiple inhaled steroids and albuterol, to get her symptoms better. She

takes them for so long because low doses do nothing and land her in the hospital

all the time and when we do a 2 week course or prednisone even if the coughing

is better or gone, it comes right back as soon because the infection is still

lingering triggering it. In the past she's been on IV Salumedrol and then oral

pred. for 6 months because it was so bad. Even afterwards, her symptoms still

linger for a looooong time. This could be a total of 3-4 months and she'd get

second and third different infections along the way. Ugh. She really never gets

viral infections, only bacterial, has had a staph infection on her toe from a

mild scratch in a swimming pool,requring 2 IV meds. cellutlitis 2 times on her

thumb that she sucks, and has been hospitalized pretty much all winter since 3

months old for asthma and multiple infections. Her average temp. is 99.6 - 99.8

daily and with RX always goes to 98.6 for some reason.

>

> Her immune system was checked around 2 years old. Things were off, but nothing

severe. The doctor found out she had TRAPS disease, and thought it would all get

better with that RX, so that's where the focus was. The last year she has worn a

mask everywhere she goes because I was sick of her being in the hospital all the

time and on all this prednisone. The last year she's been better because of it,

but can't go to kindergarten that way. She's in preschool 2 times a week this

year and wears a mask. But after her TRAPS had come under control, we took her

mask off at the request of her rheumy who thought that too would be better now.

Less that one week later, she got a simple sinus infection which required 20

days or RX, and got a stomach virus with 104 temp on top and then a chest

infection 4 days after the stomach bug with severe asthma requring 50mg of pred.

for 2months and a short hospital stay. 3 months later she's still constantly

clearing her throught and mildly coughing.

>

> So, now that I recently found out that her TRAPS is seperate from her

infections and lung issues, we went back to her immunologist. He said her

immunoglobulins were low and more importantly were not functioning properly. Her

pneumonia titers were gone as well as her HiB vaccine. She barley has any for

Tetanus either. She had her pneumonia shot re-done yesterday and will follow up

in 4-6 weeks to repeat the titers. He put her on Amoxil 400mg 2 times a day and

talked briefly about IVIG therapy after her titers come back.

>

> This is obviously all new to me and believe me I hope this helps her to not be

sick all the time and not need all this prednisone. I am wondering how familiar

this story sounds to anyone else?? Hopefully it does and some reasurrance that

we are on the right path would be

> a blessing

>

> Any tips on school, IVIG therpy or anything a newly diagnosed child and parent

could benefit from would be greatly appreciated. She said to me, great the

doctor can fix me! Now I won't need any more blood tests. She hates those of

course. I don't know how to break the news to her or make the situation more

tolerable for a child who just turned 5.

>

> Thanks,

>

>

>

>

[Guest guest]

Hi Ursula,

Maddy see's Dr. Kastner. He is in the rheumatology department of genome

research at the NIH. He sees adults and children as well.

Madeline just finished the prednisone a few weeks ago. She was on it steady for

about 2 months and then tapered slowly over the last several weeks. She's down

to her lower dose of Advair which is 115mcg twice a day as well as a nasal

steroid becuase her nose is always swollen on the inside. Before our recent

immunology appt. at CHOP hospital in Philadelphia with Dr. Orange, we saw Dr.

Stone in allergy/immunology at the NIH who prescribed the nasal steroid to see

if this was a contributing factor in her problems. No change though. Still

swollen inside. Her immunogist at CHOP said this can be the entry point for

her infections. I guess I will get more answer later??

When you say complicate things with prednisone are you referring to her

immunological standpoint?? Her frequent infections have been there since 3

months old. Certainly it has been confusing with her, but now that her TRAPS is

better managed it is more apparent that if you camled down her infections, her

asthma wouldn't be continuously triggered, thus needing such high, extended

doses of pred. That's my guess.

Re: newly diagnosed 5 year old

Who does she see at NIH? Are you familiar with Dr Fuss?

Being on steroids could always complicate this situation though. How much is

she on now ?

Ursula

Mom to Macey (15, CVID)

On Mar 16, 2011, at 8:13 PM, " karen " <kksilk526@...> wrote:

> Hi all,

> I have a daughter who just turned 5. She has had multiple problems and

weekly infections since 3 months old that would last months at a time. Summers

are always better for her. At around 2 1/2 she was diagnosed with TNF-Receptor

Associated periodic syndrome by her immunologist. It is a rare auto-inflammatory

disease which causes high fevers, joint pains, malnutrition, diarrhea, puffy

eyes and fatigue from too much inflammation. She was put on Enbrel injections

that I give her 2 times a week in her belly and legs by her rheumatologist at

home to stop the inflammation, and we also drive 4 hours to the National

Institute of Health every few months. The doctor there is the one who found the

gene for TRAPS in 1998. Finally just recently after upping her to the max of her

medication her fever flares have ceased. However the other problems that she has

had since around 3 months old, which were thought to go hand in hand are still

there. These include frequent bacterial infections, mostly ear and sinus and if

she does get an infection she usually gets a second or third right on top,

sometimes while on antbibiotics. She is always put on 20 days worth or RX

because it takes so long for her to heal. And most of all, about 4 days into her

infection she begins with coughing that gets really bad with wheezing and

chronic chest congestion. She requires about 3 months of prednisone at 50mg high

doses, multiple inhaled steroids and albuterol, to get her symptoms better. She

takes them for so long because low doses do nothing and land her in the hospital

all the time and when we do a 2 week course or prednisone even if the coughing

is better or gone, it comes right back as soon because the infection is still

lingering triggering it. In the past she's been on IV Salumedrol and then oral

pred. for 6 months because it was so bad. Even afterwards, her symptoms still

linger for a looooong time. This could be a total of 3-4 months and she'd get

second and third different infections along the way. Ugh. She really never gets

viral infections, only bacterial, has had a staph infection on her toe from a

mild scratch in a swimming pool,requring 2 IV meds. cellutlitis 2 times on her

thumb that she sucks, and has been hospitalized pretty much all winter since 3

months old for asthma and multiple infections. Her average temp. is 99.6 - 99.8

daily and with RX always goes to 98.6 for some reason.

>

> Her immune system was checked around 2 years old. Things were off, but

nothing severe. The doctor found out she had TRAPS disease, and thought it would

all get better with that RX, so that's where the focus was. The last year she

has worn a mask everywhere she goes because I was sick of her being in the

hospital all the time and on all this prednisone. The last year she's been

better because of it, but can't go to kindergarten that way. She's in preschool

2 times a week this year and wears a mask. But after her TRAPS had come under

control, we took her mask off at the request of her rheumy who thought that too

would be better now. Less that one week later, she got a simple sinus infection

which required 20 days or RX, and got a stomach virus with 104 temp on top and

then a chest infection 4 days after the stomach bug with severe asthma requring

50mg of pred. for 2months and a short hospital stay. 3 months later she's still

constantly clearing her throught and mildly coughing.

>

> So, now that I recently found out that her TRAPS is seperate from her

infections and lung issues, we went back to her immunologist. He said her

immunoglobulins were low and more importantly were not functioning properly. Her

pneumonia titers were gone as well as her HiB vaccine. She barley has any for

Tetanus either. She had her pneumonia shot re-done yesterday and will follow up

in 4-6 weeks to repeat the titers. He put her on Amoxil 400mg 2 times a day and

talked briefly about IVIG therapy after her titers come back.

>

> This is obviously all new to me and believe me I hope this helps her to not

be sick all the time and not need all this prednisone. I am wondering how

familiar this story sounds to anyone else?? Hopefully it does and some

reasurrance that we are on the right path would be

> a blessing

>

> Any tips on school, IVIG therpy or anything a newly diagnosed child and

parent could benefit from would be greatly appreciated. She said to me, great

the doctor can fix me! Now I won't need any more blood tests. She hates those of

course. I don't know how to break the news to her or make the situation more

tolerable for a child who just turned 5.

>

> Thanks,

>

>

>

>

[Guest guest]

I'm curious as to whether she has seen a pulmonologist with all her

frequent asthma exacerbations and respiratory infections? Sometimes they

might find something an immunologist might miss, such as reflux triggering

her symptoms. Reflux gets worse with infections. Just a thought, as

reflux triggers all but 2 of my asthmatics, and 2 have had fundoplications

to fix it--one of which failed, unfortunately

My son has been helped tremendously by his SCIG (subcutaneous immune

globulin infusions we do at home weekly). We just weighed him yesterday;

he has gained ten pounds since he began SCIG therapy last May! He really

struggled with doing the infusions the first month, but has settled down

now that he knows it helps him. I do recommend getting the Igi V bear and

practicing on it, once you know for sure that she will be getting

infusions. That helped my son a lot with knowing what to expect. You do

not have to know which product your child will be getting to order this

for IVIG:

http://www.baxter.com/press_room/features/2010/01_05_10-igiv.html

or for SCIG, not sure personally if the " play pack " has a stuffed animal

to practice on:

http://www.hizentra.com/consumer/request-more-information.aspx

Mindy , in Virginia, homeschooling mom of 7 asthmatics, including

, 8, with CVID and probable mitochondrial disease (plus asthma,

reflux, nonverbal autism, and neuromuscular issues)

> Hi Ursula,

>

> Maddy see's Dr. Kastner. He is in the rheumatology department of

> genome research at the NIH. He sees adults and children as well.

>

> Madeline just finished the prednisone a few weeks ago. She was on it

> steady for about 2 months and then tapered slowly over the last several

> weeks. She's down to her lower dose of Advair which is 115mcg twice a day

> as well as a nasal steroid becuase her nose is always swollen on the

> inside. Before our recent immunology appt. at CHOP hospital in

> Philadelphia with Dr. Orange, we saw Dr. Stone in allergy/immunology at

> the NIH who prescribed the nasal steroid to see if this was a contributing

> factor in her problems. No change though. Still swollen inside. Her

> immunogist at CHOP said this can be the entry point for her infections.

> I guess I will get more answer later??

>

> When you say complicate things with prednisone are you referring to her

> immunological standpoint?? Her frequent infections have been there since

> 3 months old. Certainly it has been confusing with her, but now that her

> TRAPS is better managed it is more apparent that if you camled down her

> infections, her asthma wouldn't be continuously triggered, thus needing

> such high, extended doses of pred. That's my guess.

>

>

>

>

> Re: newly diagnosed 5 year old

>

>

>

> Who does she see at NIH? Are you familiar with Dr Fuss?

>

> Being on steroids could always complicate this situation though. How

> much is she on now ?

>

> Ursula

> Mom to Macey (15, CVID)

>

> On Mar 16, 2011, at 8:13 PM, " karen " <kksilk526@...> wrote:

>

> > Hi all,

> > I have a daughter who just turned 5. She has had multiple problems and

> weekly infections since 3 months old that would last months at a time.

> Summers are always better for her. At around 2 1/2 she was diagnosed

> with TNF-Receptor Associated periodic syndrome by her immunologist. It

> is a rare auto-inflammatory disease which causes high fevers, joint

> pains, malnutrition, diarrhea, puffy eyes and fatigue from too much

> inflammation. She was put on Enbrel injections that I give her 2 times

> a week in her belly and legs by her rheumatologist at home to stop the

> inflammation, and we also drive 4 hours to the National Institute of

> Health every few months. The doctor there is the one who found the

> gene for TRAPS in 1998. Finally just recently after upping her to the

> max of her medication her fever flares have ceased. However the other

> problems that she has had since around 3 months old, which were

> thought to go hand in hand are still there. These include frequent

> bacterial infections, mostly ear and sinus and if she does get an

> infection she usually gets a second or third right on top, sometimes

> while on antbibiotics. She is always put on 20 days worth or RX

> because it takes so long for her to heal. And most of all, about 4

> days into her infection she begins with coughing that gets really bad

> with wheezing and chronic chest congestion. She requires about 3

> months of prednisone at 50mg high doses, multiple inhaled steroids and

> albuterol, to get her symptoms better. She takes them for so long

> because low doses do nothing and land her in the hospital all the time

> and when we do a 2 week course or prednisone even if the coughing is

> better or gone, it comes right back as soon because the infection is

> still lingering triggering it. In the past she's been on IV Salumedrol

> and then oral pred. for 6 months because it was so bad. Even

> afterwards, her symptoms still linger for a looooong time. This could

> be a total of 3-4 months and she'd get second and third different

> infections along the way. Ugh. She really never gets viral infections,

> only bacterial, has had a staph infection on her toe from a mild

> scratch in a swimming pool,requring 2 IV meds. cellutlitis 2 times on

> her thumb that she sucks, and has been hospitalized pretty much all

> winter since 3 months old for asthma and multiple infections. Her

> average temp. is 99.6 - 99.8 daily and with RX always goes to 98.6 for

> some reason.

> >

> > Her immune system was checked around 2 years old. Things were off, but

> nothing severe. The doctor found out she had TRAPS disease, and

> thought it would all get better with that RX, so that's where the

> focus was. The last year she has worn a mask everywhere she goes

> because I was sick of her being in the hospital all the time and on

> all this prednisone. The last year she's been better because of it,

> but can't go to kindergarten that way. She's in preschool 2 times a

> week this year and wears a mask. But after her TRAPS had come under

> control, we took her mask off at the request of her rheumy who thought

> that too would be better now. Less that one week later, she got a

> simple sinus infection which required 20 days or RX, and got a stomach

> virus with 104 temp on top and then a chest infection 4 days after the

> stomach bug with severe asthma requring 50mg of pred. for 2months and

> a short hospital stay. 3 months later she's still constantly clearing

> her throught and mildly coughing.

> >

> > So, now that I recently found out that her TRAPS is seperate from her

> infections and lung issues, we went back to her immunologist. He said

> her immunoglobulins were low and more importantly were not functioning

> properly. Her pneumonia titers were gone as well as her HiB vaccine.

> She barley has any for Tetanus either. She had her pneumonia shot

> re-done yesterday and will follow up in 4-6 weeks to repeat the

> titers. He put her on Amoxil 400mg 2 times a day and talked briefly

> about IVIG therapy after her titers come back.

> >

> > This is obviously all new to me and believe me I hope this helps her

> to not be sick all the time and not need all this prednisone. I am

> wondering how familiar this story sounds to anyone else?? Hopefully it

> does and some reasurrance that we are on the right path would be

> > a blessing

> >

> > Any tips on school, IVIG therpy or anything a newly diagnosed child

> and parent could benefit from would be greatly appreciated. She said

> to me, great the doctor can fix me! Now I won't need any more blood

> tests. She hates those of course. I don't know how to break the news

> to her or make the situation more tolerable for a child who just

> turned 5.

> >

> > Thanks,

> >

> >

> >

> >

>

>

[Guest guest]

Mindy,

Thanks for all of your advice. Maddy has been tested all around the block by a

GI doc., an ENT for structural problems, an allergist to see if that contributed

to anything, a pulmonary doc. on a regular basis, a hematologist, 1

immunologist, 2 allergists, 1 dermatologist and 2 rematologists. I think we

covered the ologists

She's had a colonoscopy, endoscopy, barium swallow study, PET CT scan's, x-rays

and extensive blood tests. We've trialed zantac, prevacid, colchachine, enbrel,

amoxil, singulair, advair, pulmacort, flovent, albuterol, benadryl, zyrtec, and

other meds. I can't remember. We've tried everything it feels like.

I ordered the kid kits you had mentioned. This is great, didn't know there was

anthing like this out there.

Did your son start out at the SCIG or did he start at the IVIG?? That's great

that he is doing well I am worried about what I am reading about side

effects and or reactions from the meds. Has your son had any difficulty with

the meds.??

Thanks,

karen

Re: newly diagnosed 5 year old

>

>

>

> Who does she see at NIH? Are you familiar with Dr Fuss?

>

> Being on steroids could always complicate this situation though. How

> much is she on now ?

>

> Ursula

> Mom to Macey (15, CVID)

>

> On Mar 16, 2011, at 8:13 PM, " karen " <kksilk526@...> wrote:

>

> > Hi all,

> > I have a daughter who just turned 5. She has had multiple problems and

> weekly infections since 3 months old that would last months at a time.

> Summers are always better for her. At around 2 1/2 she was diagnosed

> with TNF-Receptor Associated periodic syndrome by her immunologist. It

> is a rare auto-inflammatory disease which causes high fevers, joint

> pains, malnutrition, diarrhea, puffy eyes and fatigue from too much

> inflammation. She was put on Enbrel injections that I give her 2 times

> a week in her belly and legs by her rheumatologist at home to stop the

> inflammation, and we also drive 4 hours to the National Institute of

> Health every few months. The doctor there is the one who found the

> gene for TRAPS in 1998. Finally just recently after upping her to the

> max of her medication her fever flares have ceased. However the other

> problems that she has had since around 3 months old, which were

> thought to go hand in hand are still there. These include frequent

> bacterial infections, mostly ear and sinus and if she does get an

> infection she usually gets a second or third right on top, sometimes

> while on antbibiotics. She is always put on 20 days worth or RX

> because it takes so long for her to heal. And most of all, about 4

> days into her infection she begins with coughing that gets really bad

> with wheezing and chronic chest congestion. She requires about 3

> months of prednisone at 50mg high doses, multiple inhaled steroids and

> albuterol, to get her symptoms better. She takes them for so long

> because low doses do nothing and land her in the hospital all the time

> and when we do a 2 week course or prednisone even if the coughing is

> better or gone, it comes right back as soon because the infection is

> still lingering triggering it. In the past she's been on IV Salumedrol

> and then oral pred. for 6 months because it was so bad. Even

> afterwards, her symptoms still linger for a looooong time. This could

> be a total of 3-4 months and she'd get second and third different

> infections along the way. Ugh. She really never gets viral infections,

> only bacterial, has had a staph infection on her toe from a mild

> scratch in a swimming pool,requring 2 IV meds. cellutlitis 2 times on

> her thumb that she sucks, and has been hospitalized pretty much all

> winter since 3 months old for asthma and multiple infections. Her

> average temp. is 99.6 - 99.8 daily and with RX always goes to 98.6 for

> some reason.

> >

> > Her immune system was checked around 2 years old. Things were off, but

> nothing severe. The doctor found out she had TRAPS disease, and

> thought it would all get better with that RX, so that's where the

> focus was. The last year she has worn a mask everywhere she goes

> because I was sick of her being in the hospital all the time and on

> all this prednisone. The last year she's been better because of it,

> but can't go to kindergarten that way. She's in preschool 2 times a

> week this year and wears a mask. But after her TRAPS had come under

> control, we took her mask off at the request of her rheumy who thought

> that too would be better now. Less that one week later, she got a

> simple sinus infection which required 20 days or RX, and got a stomach

> virus with 104 temp on top and then a chest infection 4 days after the

> stomach bug with severe asthma requring 50mg of pred. for 2months and

> a short hospital stay. 3 months later she's still constantly clearing

> her throught and mildly coughing.

> >

> > So, now that I recently found out that her TRAPS is seperate from her

> infections and lung issues, we went back to her immunologist. He said

> her immunoglobulins were low and more importantly were not functioning

> properly. Her pneumonia titers were gone as well as her HiB vaccine.

> She barley has any for Tetanus either. She had her pneumonia shot

> re-done yesterday and will follow up in 4-6 weeks to repeat the

> titers. He put her on Amoxil 400mg 2 times a day and talked briefly

> about IVIG therapy after her titers come back.

> >

> > This is obviously all new to me and believe me I hope this helps her

> to not be sick all the time and not need all this prednisone. I am

> wondering how familiar this story sounds to anyone else?? Hopefully it

> does and some reasurrance that we are on the right path would be

> > a blessing

> >

> > Any tips on school, IVIG therpy or anything a newly diagnosed child

> and parent could benefit from would be greatly appreciated. She said

> to me, great the doctor can fix me! Now I won't need any more blood

> tests. She hates those of course. I don't know how to break the news

> to her or make the situation more tolerable for a child who just

> turned 5.

> >

> > Thanks,

> >

> >

> >

> >

>

>

[Guest guest]

My son did a " loading dose " of IVIG in the hospital, then began SCIG at

home one week later. He has tons of allergies, and has had extreme

reactions to some medications, so no one wanted his first dose to be at

home We followed everyone's advice here and gave extra IV fluids

before the infusion, premedicated well, and ran it very slowly (he was

only 41 lbs. and we ran his dose over 6 hours). He had some high blood

pressure problems during the infusion, but not enough to stop it, and he

had a headache for a week after (he gets frequent migraines and a lot of

headaches). If I would do anything differently, I would have made them do

IV fluids after the infusion, too, to help the headaches.

The SCIG is very convenient for us, and he has less side effects with it.

It did take some getting used to doing every week, setting up a routine,

and keeping him still But he does know that it helps him, and we have

noticed that if he is getting sick, and does his infusion, he feels better

much faster.

One of the unusual things that I figured out was that his migraines get

worse when he has a lower IgG trough, so we have to be proactive and keep

it higher than " normal " (but still lower than some people who have more

severe PID keep it). He also has a low IgM, which is not treated with the

SCIG, so he is still prone to fungal infections. He has a GI yeast

infection right now

I am sorry that your daughter has been so sick. Everyone here has a child

who is different, has a different immune deficiency presentation, requires

different premeds, takes IVIG or SCIG for various reasons, but we still

are able to help each other I have learned so much. I hope immune

globuline helps her. Good luck!

Mindy, mom of , 8, CVID, secondary to mitochondrial disease, and not

technically a " primary " immune deficiency--which I also got clues to this

diagnosis on the list

> Mindy,

>

> Thanks for all of your advice. Maddy has been tested all around the block

> by a GI doc., an ENT for structural problems, an allergist to see if that

> contributed to anything, a pulmonary doc. on a regular basis, a

> hematologist, 1 immunologist, 2 allergists, 1 dermatologist and 2

> rematologists. I think we covered the ologists

>

> She's had a colonoscopy, endoscopy, barium swallow study, PET CT scan's,

> x-rays and extensive blood tests. We've trialed zantac, prevacid,

> colchachine, enbrel, amoxil, singulair, advair, pulmacort, flovent,

> albuterol, benadryl, zyrtec, and other meds. I can't remember. We've

> tried everything it feels like.

>

> I ordered the kid kits you had mentioned. This is great, didn't know

> there was anthing like this out there.

>

> Did your son start out at the SCIG or did he start at the IVIG?? That's

> great that he is doing well I am worried about what I am reading about

> side effects and or reactions from the meds. Has your son had any

> difficulty with the meds.??

>

> Thanks,

>

> karen

> Re: newly diagnosed 5 year old

> >

> >

> >

> > Who does she see at NIH? Are you familiar with Dr Fuss?

> >

> > Being on steroids could always complicate this situation though. How

> > much is she on now ?

> >

> > Ursula

> > Mom to Macey (15, CVID)

> >

> > On Mar 16, 2011, at 8:13 PM, " karen " <kksilk526@...> wrote:

> >

> > > Hi all,

> > > I have a daughter who just turned 5. She has had multiple problems

> and

> > weekly infections since 3 months old that would last months at a time.

> > Summers are always better for her. At around 2 1/2 she was diagnosed

> > with TNF-Receptor Associated periodic syndrome by her immunologist. It

> > is a rare auto-inflammatory disease which causes high fevers, joint

> > pains, malnutrition, diarrhea, puffy eyes and fatigue from too much

> > inflammation. She was put on Enbrel injections that I give her 2 times

> > a week in her belly and legs by her rheumatologist at home to stop the

> > inflammation, and we also drive 4 hours to the National Institute of

> > Health every few months. The doctor there is the one who found the

> > gene for TRAPS in 1998. Finally just recently after upping her to the

> > max of her medication her fever flares have ceased. However the other

> > problems that she has had since around 3 months old, which were

> > thought to go hand in hand are still there. These include frequent

> > bacterial infections, mostly ear and sinus and if she does get an

> > infection she usually gets a second or third right on top, sometimes

> > while on antbibiotics. She is always put on 20 days worth or RX

> > because it takes so long for her to heal. And most of all, about 4

> > days into her infection she begins with coughing that gets really bad

> > with wheezing and chronic chest congestion. She requires about 3

> > months of prednisone at 50mg high doses, multiple inhaled steroids and

> > albuterol, to get her symptoms better. She takes them for so long

> > because low doses do nothing and land her in the hospital all the time

> > and when we do a 2 week course or prednisone even if the coughing is

> > better or gone, it comes right back as soon because the infection is

> > still lingering triggering it. In the past she's been on IV Salumedrol

> > and then oral pred. for 6 months because it was so bad. Even

> > afterwards, her symptoms still linger for a looooong time. This could

> > be a total of 3-4 months and she'd get second and third different

> > infections along the way. Ugh. She really never gets viral infections,

> > only bacterial, has had a staph infection on her toe from a mild

> > scratch in a swimming pool,requring 2 IV meds. cellutlitis 2 times on

> > her thumb that she sucks, and has been hospitalized pretty much all

> > winter since 3 months old for asthma and multiple infections. Her

> > average temp. is 99.6 - 99.8 daily and with RX always goes to 98.6 for

> > some reason.

> > >

> > > Her immune system was checked around 2 years old. Things were off,

> but

> > nothing severe. The doctor found out she had TRAPS disease, and

> > thought it would all get better with that RX, so that's where the

> > focus was. The last year she has worn a mask everywhere she goes

> > because I was sick of her being in the hospital all the time and on

> > all this prednisone. The last year she's been better because of it,

> > but can't go to kindergarten that way. She's in preschool 2 times a

> > week this year and wears a mask. But after her TRAPS had come under

> > control, we took her mask off at the request of her rheumy who thought

> > that too would be better now. Less that one week later, she got a

> > simple sinus infection which required 20 days or RX, and got a stomach

> > virus with 104 temp on top and then a chest infection 4 days after the

> > stomach bug with severe asthma requring 50mg of pred. for 2months and

> > a short hospital stay. 3 months later she's still constantly clearing

> > her throught and mildly coughing.

> > >

> > > So, now that I recently found out that her TRAPS is seperate from

> her

> > infections and lung issues, we went back to her immunologist. He said

> > her immunoglobulins were low and more importantly were not functioning

> > properly. Her pneumonia titers were gone as well as her HiB vaccine.

> > She barley has any for Tetanus either. She had her pneumonia shot

> > re-done yesterday and will follow up in 4-6 weeks to repeat the

> > titers. He put her on Amoxil 400mg 2 times a day and talked briefly

> > about IVIG therapy after her titers come back.

> > >

> > > This is obviously all new to me and believe me I hope this helps her

> > to not be sick all the time and not need all this prednisone. I am

> > wondering how familiar this story sounds to anyone else?? Hopefully it

> > does and some reasurrance that we are on the right path would be

> > > a blessing

> > >

> > > Any tips on school, IVIG therpy or anything a newly diagnosed child

> > and parent could benefit from would be greatly appreciated. She said

> > to me, great the doctor can fix me! Now I won't need any more blood

> > tests. She hates those of course. I don't know how to break the news

> > to her or make the situation more tolerable for a child who just

> > turned 5.

> > >

> > > Thanks,

> > >

> > >

> > >

> > >

> >

> >

[Guest guest]

My son did a " loading dose " of IVIG in the hospital, then began SCIG at

home one week later. He has tons of allergies, and has had extreme

reactions to some medications, so no one wanted his first dose to be at

home We followed everyone's advice here and gave extra IV fluids

before the infusion, premedicated well, and ran it very slowly (he was

only 41 lbs. and we ran his dose over 6 hours). He had some high blood

pressure problems during the infusion, but not enough to stop it, and he

had a headache for a week after (he gets frequent migraines and a lot of

headaches). If I would do anything differently, I would have made them do

IV fluids after the infusion, too, to help the headaches.

The SCIG is very convenient for us, and he has less side effects with it.

It did take some getting used to doing every week, setting up a routine,

and keeping him still But he does know that it helps him, and we have

noticed that if he is getting sick, and does his infusion, he feels better

much faster.

One of the unusual things that I figured out was that his migraines get

worse when he has a lower IgG trough, so we have to be proactive and keep

it higher than " normal " (but still lower than some people who have more

severe PID keep it). He also has a low IgM, which is not treated with the

SCIG, so he is still prone to fungal infections. He has a GI yeast

infection right now

I am sorry that your daughter has been so sick. Everyone here has a child

who is different, has a different immune deficiency presentation, requires

different premeds, takes IVIG or SCIG for various reasons, but we still

are able to help each other I have learned so much. I hope immune

globuline helps her. Good luck!

Mindy, mom of , 8, CVID, secondary to mitochondrial disease, and not

technically a " primary " immune deficiency--which I also got clues to this

diagnosis on the list

> Mindy,

>

> Thanks for all of your advice. Maddy has been tested all around the block

> by a GI doc., an ENT for structural problems, an allergist to see if that

> contributed to anything, a pulmonary doc. on a regular basis, a

> hematologist, 1 immunologist, 2 allergists, 1 dermatologist and 2

> rematologists. I think we covered the ologists

>

> She's had a colonoscopy, endoscopy, barium swallow study, PET CT scan's,

> x-rays and extensive blood tests. We've trialed zantac, prevacid,

> colchachine, enbrel, amoxil, singulair, advair, pulmacort, flovent,

> albuterol, benadryl, zyrtec, and other meds. I can't remember. We've

> tried everything it feels like.

>

> I ordered the kid kits you had mentioned. This is great, didn't know

> there was anthing like this out there.

>

> Did your son start out at the SCIG or did he start at the IVIG?? That's

> great that he is doing well I am worried about what I am reading about

> side effects and or reactions from the meds. Has your son had any

> difficulty with the meds.??

>

> Thanks,

>

> karen

> Re: newly diagnosed 5 year old

> >

> >

> >

> > Who does she see at NIH? Are you familiar with Dr Fuss?

> >

> > Being on steroids could always complicate this situation though. How

> > much is she on now ?

> >

> > Ursula

> > Mom to Macey (15, CVID)

> >

> > On Mar 16, 2011, at 8:13 PM, " karen " <kksilk526@...> wrote:

> >

> > > Hi all,

> > > I have a daughter who just turned 5. She has had multiple problems

> and

> > weekly infections since 3 months old that would last months at a time.

> > Summers are always better for her. At around 2 1/2 she was diagnosed

> > with TNF-Receptor Associated periodic syndrome by her immunologist. It

> > is a rare auto-inflammatory disease which causes high fevers, joint

> > pains, malnutrition, diarrhea, puffy eyes and fatigue from too much

> > inflammation. She was put on Enbrel injections that I give her 2 times

> > a week in her belly and legs by her rheumatologist at home to stop the

> > inflammation, and we also drive 4 hours to the National Institute of

> > Health every few months. The doctor there is the one who found the

> > gene for TRAPS in 1998. Finally just recently after upping her to the

> > max of her medication her fever flares have ceased. However the other

> > problems that she has had since around 3 months old, which were

> > thought to go hand in hand are still there. These include frequent

> > bacterial infections, mostly ear and sinus and if she does get an

> > infection she usually gets a second or third right on top, sometimes

> > while on antbibiotics. She is always put on 20 days worth or RX

> > because it takes so long for her to heal. And most of all, about 4

> > days into her infection she begins with coughing that gets really bad

> > with wheezing and chronic chest congestion. She requires about 3

> > months of prednisone at 50mg high doses, multiple inhaled steroids and

> > albuterol, to get her symptoms better. She takes them for so long

> > because low doses do nothing and land her in the hospital all the time

> > and when we do a 2 week course or prednisone even if the coughing is

> > better or gone, it comes right back as soon because the infection is

> > still lingering triggering it. In the past she's been on IV Salumedrol

> > and then oral pred. for 6 months because it was so bad. Even

> > afterwards, her symptoms still linger for a looooong time. This could

> > be a total of 3-4 months and she'd get second and third different

> > infections along the way. Ugh. She really never gets viral infections,

> > only bacterial, has had a staph infection on her toe from a mild

> > scratch in a swimming pool,requring 2 IV meds. cellutlitis 2 times on

> > her thumb that she sucks, and has been hospitalized pretty much all

> > winter since 3 months old for asthma and multiple infections. Her

> > average temp. is 99.6 - 99.8 daily and with RX always goes to 98.6 for

> > some reason.

> > >

> > > Her immune system was checked around 2 years old. Things were off,

> but

> > nothing severe. The doctor found out she had TRAPS disease, and

> > thought it would all get better with that RX, so that's where the

> > focus was. The last year she has worn a mask everywhere she goes

> > because I was sick of her being in the hospital all the time and on

> > all this prednisone. The last year she's been better because of it,

> > but can't go to kindergarten that way. She's in preschool 2 times a

> > week this year and wears a mask. But after her TRAPS had come under

> > control, we took her mask off at the request of her rheumy who thought

> > that too would be better now. Less that one week later, she got a

> > simple sinus infection which required 20 days or RX, and got a stomach

> > virus with 104 temp on top and then a chest infection 4 days after the

> > stomach bug with severe asthma requring 50mg of pred. for 2months and

> > a short hospital stay. 3 months later she's still constantly clearing

> > her throught and mildly coughing.

> > >

> > > So, now that I recently found out that her TRAPS is seperate from

> her

> > infections and lung issues, we went back to her immunologist. He said

> > her immunoglobulins were low and more importantly were not functioning

> > properly. Her pneumonia titers were gone as well as her HiB vaccine.

> > She barley has any for Tetanus either. She had her pneumonia shot

> > re-done yesterday and will follow up in 4-6 weeks to repeat the

> > titers. He put her on Amoxil 400mg 2 times a day and talked briefly

> > about IVIG therapy after her titers come back.

> > >

> > > This is obviously all new to me and believe me I hope this helps her

> > to not be sick all the time and not need all this prednisone. I am

> > wondering how familiar this story sounds to anyone else?? Hopefully it

> > does and some reasurrance that we are on the right path would be

> > > a blessing

> > >

> > > Any tips on school, IVIG therpy or anything a newly diagnosed child

> > and parent could benefit from would be greatly appreciated. She said

> > to me, great the doctor can fix me! Now I won't need any more blood

> > tests. She hates those of course. I don't know how to break the news

> > to her or make the situation more tolerable for a child who just

> > turned 5.

> > >

> > > Thanks,

> > >

> > >

> > >

> > >

> >

> >

[Guest guest]

, absoultely very familiar, and it took 9 years to diagnose my daughter, it

was hell, be glad they caught it sooner and she is on her way to getting help,

Makenzie is a WHOLE NEW child since doing infusions, we have only had to use

steroids a couple times in the last year, Vivaglobin has made her life much

better we love doing subq at home weekly, there are way less side effects

than doing it every three to four weeks via an IV. Our Dr's let us pick, and

Kenzie chose subq.

Good luck, you ARE on the right path, you will soon see

Makenzie 10

21

[Guest guest]

, absoultely very familiar, and it took 9 years to diagnose my daughter, it

was hell, be glad they caught it sooner and she is on her way to getting help,

Makenzie is a WHOLE NEW child since doing infusions, we have only had to use

steroids a couple times in the last year, Vivaglobin has made her life much

better we love doing subq at home weekly, there are way less side effects

than doing it every three to four weeks via an IV. Our Dr's let us pick, and

Kenzie chose subq.

Good luck, you ARE on the right path, you will soon see

Makenzie 10

21

[Guest guest]

Hi ,

I can't answer any of your questions, just wanted to let you know to hang in

there.  My son's also a patient of Dr. Orange's at CHOP.  He's a great doctor,

always willing to answer all of my questions and give me a call.  Dr. Orange

seems to prefer SCIG, do you know if you'll be starting with IVIG or SCIG?  If

you start with IVIG in the day medicine unit, you might want to make sure they

go really slow.  I was also told that Dr. Orange does not like to premedicate

on

the first procedure, so you might want to talk to him about that if you have

concerns. 

Take care,

7yo CVID

________________________________

From: karen & kevin silk <kksilk526@...>

Sent: Thu, March 17, 2011 8:01:47 AM

Subject: Re: newly diagnosed 5 year old

 

Mindy,

Thanks for all of your advice. Maddy has been tested all around the block by a

GI doc., an ENT for structural problems, an allergist to see if that contributed

to anything, a pulmonary doc. on a regular basis, a hematologist, 1

immunologist, 2 allergists, 1 dermatologist and 2 rematologists. I think we

covered the ologists

She's had a colonoscopy, endoscopy, barium swallow study, PET CT scan's, x-rays

and extensive blood tests. We've trialed zantac, prevacid, colchachine, enbrel,

amoxil, singulair, advair, pulmacort, flovent, albuterol, benadryl, zyrtec, and

other meds. I can't remember. We've tried everything it feels like.

I ordered the kid kits you had mentioned. This is great, didn't know there was

anthing like this out there.

Did your son start out at the SCIG or did he start at the IVIG?? That's great

that he is doing well I am worried about what I am reading about side effects

and or reactions from the meds. Has your son had any difficulty with the meds.??

Thanks,

karen

Re: newly diagnosed 5 year old

>

>

>

> Who does she see at NIH? Are you familiar with Dr Fuss?

>

> Being on steroids could always complicate this situation though. How

> much is she on now ?

>

> Ursula

> Mom to Macey (15, CVID)

>

> On Mar 16, 2011, at 8:13 PM, " karen " <kksilk526@...> wrote:

>

> > Hi all,

> > I have a daughter who just turned 5. She has had multiple problems and

> weekly infections since 3 months old that would last months at a time.

> Summers are always better for her. At around 2 1/2 she was diagnosed

> with TNF-Receptor Associated periodic syndrome by her immunologist. It

> is a rare auto-inflammatory disease which causes high fevers, joint

> pains, malnutrition, diarrhea, puffy eyes and fatigue from too much

> inflammation. She was put on Enbrel injections that I give her 2 times

> a week in her belly and legs by her rheumatologist at home to stop the

> inflammation, and we also drive 4 hours to the National Institute of

> Health every few months. The doctor there is the one who found the

> gene for TRAPS in 1998. Finally just recently after upping her to the

> max of her medication her fever flares have ceased. However the other

> problems that she has had since around 3 months old, which were

> thought to go hand in hand are still there. These include frequent

> bacterial infections, mostly ear and sinus and if she does get an

> infection she usually gets a second or third right on top, sometimes

> while on antbibiotics. She is always put on 20 days worth or RX

> because it takes so long for her to heal. And most of all, about 4

> days into her infection she begins with coughing that gets really bad

> with wheezing and chronic chest congestion. She requires about 3

> months of prednisone at 50mg high doses, multiple inhaled steroids and

> albuterol, to get her symptoms better. She takes them for so long

> because low doses do nothing and land her in the hospital all the time

> and when we do a 2 week course or prednisone even if the coughing is

> better or gone, it comes right back as soon because the infection is

> still lingering triggering it. In the past she's been on IV Salumedrol

> and then oral pred. for 6 months because it was so bad. Even

> afterwards, her symptoms still linger for a looooong time. This could

> be a total of 3-4 months and she'd get second and third different

> infections along the way. Ugh. She really never gets viral infections,

> only bacterial, has had a staph infection on her toe from a mild

> scratch in a swimming pool,requring 2 IV meds. cellutlitis 2 times on

> her thumb that she sucks, and has been hospitalized pretty much all

> winter since 3 months old for asthma and multiple infections. Her

> average temp. is 99.6 - 99.8 daily and with RX always goes to 98.6 for

> some reason.

> >

> > Her immune system was checked around 2 years old. Things were off, but

> nothing severe. The doctor found out she had TRAPS disease, and

> thought it would all get better with that RX, so that's where the

> focus was. The last year she has worn a mask everywhere she goes

> because I was sick of her being in the hospital all the time and on

> all this prednisone. The last year she's been better because of it,

> but can't go to kindergarten that way. She's in preschool 2 times a

> week this year and wears a mask. But after her TRAPS had come under

> control, we took her mask off at the request of her rheumy who thought

> that too would be better now. Less that one week later, she got a

> simple sinus infection which required 20 days or RX, and got a stomach

> virus with 104 temp on top and then a chest infection 4 days after the

> stomach bug with severe asthma requring 50mg of pred. for 2months and

> a short hospital stay. 3 months later she's still constantly clearing

> her throught and mildly coughing.

> >

> > So, now that I recently found out that her TRAPS is seperate from her

> infections and lung issues, we went back to her immunologist. He said

> her immunoglobulins were low and more importantly were not functioning

> properly. Her pneumonia titers were gone as well as her HiB vaccine.

> She barley has any for Tetanus either. She had her pneumonia shot

> re-done yesterday and will follow up in 4-6 weeks to repeat the

> titers. He put her on Amoxil 400mg 2 times a day and talked briefly

> about IVIG therapy after her titers come back.

> >

> > This is obviously all new to me and believe me I hope this helps her

> to not be sick all the time and not need all this prednisone. I am

> wondering how familiar this story sounds to anyone else?? Hopefully it

> does and some reasurrance that we are on the right path would be

> > a blessing

> >

> > Any tips on school, IVIG therpy or anything a newly diagnosed child

> and parent could benefit from would be greatly appreciated. She said

> to me, great the doctor can fix me! Now I won't need any more blood

> tests. She hates those of course. I don't know how to break the news

> to her or make the situation more tolerable for a child who just

> turned 5.

> >

> > Thanks,

> >

> >

> >

> >

>

>

[Guest guest]

Hi ,

I can't answer any of your questions, just wanted to let you know to hang in

there.  My son's also a patient of Dr. Orange's at CHOP.  He's a great doctor,

always willing to answer all of my questions and give me a call.  Dr. Orange

seems to prefer SCIG, do you know if you'll be starting with IVIG or SCIG?  If

you start with IVIG in the day medicine unit, you might want to make sure they

go really slow.  I was also told that Dr. Orange does not like to premedicate

on

the first procedure, so you might want to talk to him about that if you have

concerns. 

Take care,

7yo CVID

________________________________

From: karen & kevin silk <kksilk526@...>

Sent: Thu, March 17, 2011 8:01:47 AM

Subject: Re: newly diagnosed 5 year old

 

Mindy,

Thanks for all of your advice. Maddy has been tested all around the block by a

GI doc., an ENT for structural problems, an allergist to see if that contributed

to anything, a pulmonary doc. on a regular basis, a hematologist, 1

immunologist, 2 allergists, 1 dermatologist and 2 rematologists. I think we

covered the ologists

She's had a colonoscopy, endoscopy, barium swallow study, PET CT scan's, x-rays

and extensive blood tests. We've trialed zantac, prevacid, colchachine, enbrel,

amoxil, singulair, advair, pulmacort, flovent, albuterol, benadryl, zyrtec, and

other meds. I can't remember. We've tried everything it feels like.

I ordered the kid kits you had mentioned. This is great, didn't know there was

anthing like this out there.

Did your son start out at the SCIG or did he start at the IVIG?? That's great

that he is doing well I am worried about what I am reading about side effects

and or reactions from the meds. Has your son had any difficulty with the meds.??

Thanks,

karen

Re: newly diagnosed 5 year old

>

>

>

> Who does she see at NIH? Are you familiar with Dr Fuss?

>

> Being on steroids could always complicate this situation though. How

> much is she on now ?

>

> Ursula

> Mom to Macey (15, CVID)

>

> On Mar 16, 2011, at 8:13 PM, " karen " <kksilk526@...> wrote:

>

> > Hi all,

> > I have a daughter who just turned 5. She has had multiple problems and

> weekly infections since 3 months old that would last months at a time.

> Summers are always better for her. At around 2 1/2 she was diagnosed

> with TNF-Receptor Associated periodic syndrome by her immunologist. It

> is a rare auto-inflammatory disease which causes high fevers, joint

> pains, malnutrition, diarrhea, puffy eyes and fatigue from too much

> inflammation. She was put on Enbrel injections that I give her 2 times

> a week in her belly and legs by her rheumatologist at home to stop the

> inflammation, and we also drive 4 hours to the National Institute of

> Health every few months. The doctor there is the one who found the

> gene for TRAPS in 1998. Finally just recently after upping her to the

> max of her medication her fever flares have ceased. However the other

> problems that she has had since around 3 months old, which were

> thought to go hand in hand are still there. These include frequent

> bacterial infections, mostly ear and sinus and if she does get an

> infection she usually gets a second or third right on top, sometimes

> while on antbibiotics. She is always put on 20 days worth or RX

> because it takes so long for her to heal. And most of all, about 4

> days into her infection she begins with coughing that gets really bad

> with wheezing and chronic chest congestion. She requires about 3

> months of prednisone at 50mg high doses, multiple inhaled steroids and

> albuterol, to get her symptoms better. She takes them for so long

> because low doses do nothing and land her in the hospital all the time

> and when we do a 2 week course or prednisone even if the coughing is

> better or gone, it comes right back as soon because the infection is

> still lingering triggering it. In the past she's been on IV Salumedrol

> and then oral pred. for 6 months because it was so bad. Even

> afterwards, her symptoms still linger for a looooong time. This could

> be a total of 3-4 months and she'd get second and third different

> infections along the way. Ugh. She really never gets viral infections,

> only bacterial, has had a staph infection on her toe from a mild

> scratch in a swimming pool,requring 2 IV meds. cellutlitis 2 times on

> her thumb that she sucks, and has been hospitalized pretty much all

> winter since 3 months old for asthma and multiple infections. Her

> average temp. is 99.6 - 99.8 daily and with RX always goes to 98.6 for

> some reason.

> >

> > Her immune system was checked around 2 years old. Things were off, but

> nothing severe. The doctor found out she had TRAPS disease, and

> thought it would all get better with that RX, so that's where the

> focus was. The last year she has worn a mask everywhere she goes

> because I was sick of her being in the hospital all the time and on

> all this prednisone. The last year she's been better because of it,

> but can't go to kindergarten that way. She's in preschool 2 times a

> week this year and wears a mask. But after her TRAPS had come under

> control, we took her mask off at the request of her rheumy who thought

> that too would be better now. Less that one week later, she got a

> simple sinus infection which required 20 days or RX, and got a stomach

> virus with 104 temp on top and then a chest infection 4 days after the

> stomach bug with severe asthma requring 50mg of pred. for 2months and

> a short hospital stay. 3 months later she's still constantly clearing

> her throught and mildly coughing.

> >

> > So, now that I recently found out that her TRAPS is seperate from her

> infections and lung issues, we went back to her immunologist. He said

> her immunoglobulins were low and more importantly were not functioning

> properly. Her pneumonia titers were gone as well as her HiB vaccine.

> She barley has any for Tetanus either. She had her pneumonia shot

> re-done yesterday and will follow up in 4-6 weeks to repeat the

> titers. He put her on Amoxil 400mg 2 times a day and talked briefly

> about IVIG therapy after her titers come back.

> >

> > This is obviously all new to me and believe me I hope this helps her

> to not be sick all the time and not need all this prednisone. I am

> wondering how familiar this story sounds to anyone else?? Hopefully it

> does and some reasurrance that we are on the right path would be

> > a blessing

> >

> > Any tips on school, IVIG therpy or anything a newly diagnosed child

> and parent could benefit from would be greatly appreciated. She said

> to me, great the doctor can fix me! Now I won't need any more blood

> tests. She hates those of course. I don't know how to break the news

> to her or make the situation more tolerable for a child who just

> turned 5.

> >

> > Thanks,

> >

> >

> >

> >

>

>

[Guest guest]

Thanks .

Dr. Orange said IVIG, but did not go into too much detail yet. Maybe he will do

SCIG instead like you had mentioned. Can anyone tell me the common side effects

of the subq. I have read on the previous emails about severe headaches and

vomitting from IVIG. Are the side effects the same just more mild??

Re: newly diagnosed 5 year old

>

>

>

> Who does she see at NIH? Are you familiar with Dr Fuss?

>

> Being on steroids could always complicate this situation though. How

> much is she on now ?

>

> Ursula

> Mom to Macey (15, CVID)

>

> On Mar 16, 2011, at 8:13 PM, " karen " <kksilk526@...> wrote:

>

> > Hi all,

> > I have a daughter who just turned 5. She has had multiple problems and

> weekly infections since 3 months old that would last months at a time.

> Summers are always better for her. At around 2 1/2 she was diagnosed

> with TNF-Receptor Associated periodic syndrome by her immunologist. It

> is a rare auto-inflammatory disease which causes high fevers, joint

> pains, malnutrition, diarrhea, puffy eyes and fatigue from too much

> inflammation. She was put on Enbrel injections that I give her 2 times

> a week in her belly and legs by her rheumatologist at home to stop the

> inflammation, and we also drive 4 hours to the National Institute of

> Health every few months. The doctor there is the one who found the

> gene for TRAPS in 1998. Finally just recently after upping her to the

> max of her medication her fever flares have ceased. However the other

> problems that she has had since around 3 months old, which were

> thought to go hand in hand are still there. These include frequent

> bacterial infections, mostly ear and sinus and if she does get an

> infection she usually gets a second or third right on top, sometimes

> while on antbibiotics. She is always put on 20 days worth or RX

> because it takes so long for her to heal. And most of all, about 4

> days into her infection she begins with coughing that gets really bad

> with wheezing and chronic chest congestion. She requires about 3

> months of prednisone at 50mg high doses, multiple inhaled steroids and

> albuterol, to get her symptoms better. She takes them for so long

> because low doses do nothing and land her in the hospital all the time

> and when we do a 2 week course or prednisone even if the coughing is

> better or gone, it comes right back as soon because the infection is

> still lingering triggering it. In the past she's been on IV Salumedrol

> and then oral pred. for 6 months because it was so bad. Even

> afterwards, her symptoms still linger for a looooong time. This could

> be a total of 3-4 months and she'd get second and third different

> infections along the way. Ugh. She really never gets viral infections,

> only bacterial, has had a staph infection on her toe from a mild

> scratch in a swimming pool,requring 2 IV meds. cellutlitis 2 times on

> her thumb that she sucks, and has been hospitalized pretty much all

> winter since 3 months old for asthma and multiple infections. Her

> average temp. is 99.6 - 99.8 daily and with RX always goes to 98.6 for

> some reason.

> >

> > Her immune system was checked around 2 years old. Things were off, but

> nothing severe. The doctor found out she had TRAPS disease, and

> thought it would all get better with that RX, so that's where the

> focus was. The last year she has worn a mask everywhere she goes

> because I was sick of her being in the hospital all the time and on

> all this prednisone. The last year she's been better because of it,

> but can't go to kindergarten that way. She's in preschool 2 times a

> week this year and wears a mask. But after her TRAPS had come under

> control, we took her mask off at the request of her rheumy who thought

> that too would be better now. Less that one week later, she got a

> simple sinus infection which required 20 days or RX, and got a stomach

> virus with 104 temp on top and then a chest infection 4 days after the

> stomach bug with severe asthma requring 50mg of pred. for 2months and

> a short hospital stay. 3 months later she's still constantly clearing

> her throught and mildly coughing.

> >

> > So, now that I recently found out that her TRAPS is seperate from her

> infections and lung issues, we went back to her immunologist. He said

> her immunoglobulins were low and more importantly were not functioning

> properly. Her pneumonia titers were gone as well as her HiB vaccine.

> She barley has any for Tetanus either. She had her pneumonia shot

> re-done yesterday and will follow up in 4-6 weeks to repeat the

> titers. He put her on Amoxil 400mg 2 times a day and talked briefly

> about IVIG therapy after her titers come back.

> >

> > This is obviously all new to me and believe me I hope this helps her

> to not be sick all the time and not need all this prednisone. I am

> wondering how familiar this story sounds to anyone else?? Hopefully it

> does and some reasurrance that we are on the right path would be

> > a blessing

> >

> > Any tips on school, IVIG therpy or anything a newly diagnosed child

> and parent could benefit from would be greatly appreciated. She said

> to me, great the doctor can fix me! Now I won't need any more blood

> tests. She hates those of course. I don't know how to break the news

> to her or make the situation more tolerable for a child who just

> turned 5.

> >

> > Thanks,

> >

> >

> >

> >

>

>

[Guest guest]

Thanks .

Dr. Orange said IVIG, but did not go into too much detail yet. Maybe he will do

SCIG instead like you had mentioned. Can anyone tell me the common side effects

of the subq. I have read on the previous emails about severe headaches and

vomitting from IVIG. Are the side effects the same just more mild??

Re: newly diagnosed 5 year old

>

>

>

> Who does she see at NIH? Are you familiar with Dr Fuss?

>

> Being on steroids could always complicate this situation though. How

> much is she on now ?

>

> Ursula

> Mom to Macey (15, CVID)

>

> On Mar 16, 2011, at 8:13 PM, " karen " <kksilk526@...> wrote:

>

> > Hi all,

> > I have a daughter who just turned 5. She has had multiple problems and

> weekly infections since 3 months old that would last months at a time.

> Summers are always better for her. At around 2 1/2 she was diagnosed

> with TNF-Receptor Associated periodic syndrome by her immunologist. It

> is a rare auto-inflammatory disease which causes high fevers, joint

> pains, malnutrition, diarrhea, puffy eyes and fatigue from too much

> inflammation. She was put on Enbrel injections that I give her 2 times

> a week in her belly and legs by her rheumatologist at home to stop the

> inflammation, and we also drive 4 hours to the National Institute of

> Health every few months. The doctor there is the one who found the

> gene for TRAPS in 1998. Finally just recently after upping her to the

> max of her medication her fever flares have ceased. However the other

> problems that she has had since around 3 months old, which were

> thought to go hand in hand are still there. These include frequent

> bacterial infections, mostly ear and sinus and if she does get an

> infection she usually gets a second or third right on top, sometimes

> while on antbibiotics. She is always put on 20 days worth or RX

> because it takes so long for her to heal. And most of all, about 4

> days into her infection she begins with coughing that gets really bad

> with wheezing and chronic chest congestion. She requires about 3

> months of prednisone at 50mg high doses, multiple inhaled steroids and

> albuterol, to get her symptoms better. She takes them for so long

> because low doses do nothing and land her in the hospital all the time

> and when we do a 2 week course or prednisone even if the coughing is

> better or gone, it comes right back as soon because the infection is

> still lingering triggering it. In the past she's been on IV Salumedrol

> and then oral pred. for 6 months because it was so bad. Even

> afterwards, her symptoms still linger for a looooong time. This could

> be a total of 3-4 months and she'd get second and third different

> infections along the way. Ugh. She really never gets viral infections,

> only bacterial, has had a staph infection on her toe from a mild

> scratch in a swimming pool,requring 2 IV meds. cellutlitis 2 times on

> her thumb that she sucks, and has been hospitalized pretty much all

> winter since 3 months old for asthma and multiple infections. Her

> average temp. is 99.6 - 99.8 daily and with RX always goes to 98.6 for

> some reason.

> >

> > Her immune system was checked around 2 years old. Things were off, but

> nothing severe. The doctor found out she had TRAPS disease, and

> thought it would all get better with that RX, so that's where the

> focus was. The last year she has worn a mask everywhere she goes

> because I was sick of her being in the hospital all the time and on

> all this prednisone. The last year she's been better because of it,

> but can't go to kindergarten that way. She's in preschool 2 times a

> week this year and wears a mask. But after her TRAPS had come under

> control, we took her mask off at the request of her rheumy who thought

> that too would be better now. Less that one week later, she got a

> simple sinus infection which required 20 days or RX, and got a stomach

> virus with 104 temp on top and then a chest infection 4 days after the

> stomach bug with severe asthma requring 50mg of pred. for 2months and

> a short hospital stay. 3 months later she's still constantly clearing

> her throught and mildly coughing.

> >

> > So, now that I recently found out that her TRAPS is seperate from her

> infections and lung issues, we went back to her immunologist. He said

> her immunoglobulins were low and more importantly were not functioning

> properly. Her pneumonia titers were gone as well as her HiB vaccine.

> She barley has any for Tetanus either. She had her pneumonia shot

> re-done yesterday and will follow up in 4-6 weeks to repeat the

> titers. He put her on Amoxil 400mg 2 times a day and talked briefly

> about IVIG therapy after her titers come back.

> >

> > This is obviously all new to me and believe me I hope this helps her

> to not be sick all the time and not need all this prednisone. I am

> wondering how familiar this story sounds to anyone else?? Hopefully it

> does and some reasurrance that we are on the right path would be

> > a blessing

> >

> > Any tips on school, IVIG therpy or anything a newly diagnosed child

> and parent could benefit from would be greatly appreciated. She said

> to me, great the doctor can fix me! Now I won't need any more blood

> tests. She hates those of course. I don't know how to break the news

> to her or make the situation more tolerable for a child who just

> turned 5.

> >

> > Thanks,

> >

> >

> >

> >

>

>

[Guest guest]

,

Thank you for the reasurance that we're on the right track. I guess you are

able to take the oral steroid while on the Vivaglobin? Does Makenzie have

asthma problems like Maddy also?? I am hearing more good things very quickly on

this site about the subq vs. IVIG as I'm trying to quickly familiarize myself

with the new medications. What side effects has your daugher experienced?? I

thought I had read somewhere that the down side of this at thome is the fact

that if you have a reaction, there is no doctor around. I'm guessing reactions

are uncommon. I was also wondering how long you had to be shown the procedure.

Sorry for all the questions. I'm sure I'll be pro soon

Re: newly diagnosed 5 year old

, absoultely very familiar, and it took 9 years to diagnose my daughter,

it was hell, be glad they caught it sooner and she is on her way to getting

help, Makenzie is a WHOLE NEW child since doing infusions, we have only had to

use steroids a couple times in the last year, Vivaglobin has made her life much

better we love doing subq at home weekly, there are way less side effects

than doing it every three to four weeks via an IV. Our Dr's let us pick, and

Kenzie chose subq.

Good luck, you ARE on the right path, you will soon see

Makenzie 10

21

[Guest guest]

,

Thank you for the reasurance that we're on the right track. I guess you are

able to take the oral steroid while on the Vivaglobin? Does Makenzie have

asthma problems like Maddy also?? I am hearing more good things very quickly on

this site about the subq vs. IVIG as I'm trying to quickly familiarize myself

with the new medications. What side effects has your daugher experienced?? I

thought I had read somewhere that the down side of this at thome is the fact

that if you have a reaction, there is no doctor around. I'm guessing reactions

are uncommon. I was also wondering how long you had to be shown the procedure.

Sorry for all the questions. I'm sure I'll be pro soon

Re: newly diagnosed 5 year old

, absoultely very familiar, and it took 9 years to diagnose my daughter,

it was hell, be glad they caught it sooner and she is on her way to getting

help, Makenzie is a WHOLE NEW child since doing infusions, we have only had to

use steroids a couple times in the last year, Vivaglobin has made her life much

better we love doing subq at home weekly, there are way less side effects

than doing it every three to four weeks via an IV. Our Dr's let us pick, and

Kenzie chose subq.

Good luck, you ARE on the right path, you will soon see

Makenzie 10

21

[Guest guest]

For us, Subq is the only way to go. Tristen (6 years old) was on Subq for 2

years when my husband switched jobs and our insurance no longer approved subq.

She did a dose of IVIG and 24 hours later ended up in the ER and being admitted

from ascetic meningitis. Thankfully after all that we went through, the

insurance company finally decided to approve subq for us again! She's back on

subq for the past 6 months and has been doing fine! She has never had a

reaction to subq. For us, it keeps her levels more consistent, it's flexible

and convenient and keeps her healthy for the most part. Even after she had her

reaction to IVIG, I have never worried about doing the subq at home and not

having a nurse around.

The first time Tristen did subq, we did it at the dr's office with a home health

nurse. After that the home health nurse came to our house 2 more times and then

once she saw I was good to go on my own, that was it. A home health nurse was

here last week because we switched from vivaglobin to hizentra, but everything

was fine then. She was just here to make sure she didn't have a reaction.

Before you know it, it will become routine and be just another med that you give

your dr. I'm off to do Tristen's infusion right now!

le mom to:

Tristen 6: CVID, asthma, peanut allergy

Kaitlyn 8: healthy

________________________________

From: karen & kevin silk <kksilk526@...>

Sent: Thu, March 17, 2011 2:40:29 PM

Subject: Re: Re: newly diagnosed 5 year old

,

Thank you for the reasurance that we're on the right track. I guess you are

able to take the oral steroid while on the Vivaglobin? Does Makenzie have

asthma problems like Maddy also?? I am hearing more good things very quickly on

this site about the subq vs. IVIG as I'm trying to quickly familiarize myself

with the new medications. What side effects has your daugher experienced?? I

thought I had read somewhere that the down side of this at thome is the fact

that if you have a reaction, there is no doctor around. I'm guessing reactions

are uncommon. I was also wondering how long you had to be shown the procedure.

Sorry for all the questions. I'm sure I'll be pro soon

Re: newly diagnosed 5 year old

, absoultely very familiar, and it took 9 years to diagnose my daughter, it

was hell, be glad they caught it sooner and she is on her way to getting help,

Makenzie is a WHOLE NEW child since doing infusions, we have only had to use

steroids a couple times in the last year, Vivaglobin has made her life much

better we love doing subq at home weekly, there are way less side effects

than doing it every three to four weeks via an IV. Our Dr's let us pick, and

Kenzie chose subq.

Good luck, you ARE on the right path, you will soon see

Makenzie 10

21

[Guest guest]

For us, Subq is the only way to go. Tristen (6 years old) was on Subq for 2

years when my husband switched jobs and our insurance no longer approved subq.

She did a dose of IVIG and 24 hours later ended up in the ER and being admitted

from ascetic meningitis. Thankfully after all that we went through, the

insurance company finally decided to approve subq for us again! She's back on

subq for the past 6 months and has been doing fine! She has never had a

reaction to subq. For us, it keeps her levels more consistent, it's flexible

and convenient and keeps her healthy for the most part. Even after she had her

reaction to IVIG, I have never worried about doing the subq at home and not

having a nurse around.

The first time Tristen did subq, we did it at the dr's office with a home health

nurse. After that the home health nurse came to our house 2 more times and then

once she saw I was good to go on my own, that was it. A home health nurse was

here last week because we switched from vivaglobin to hizentra, but everything

was fine then. She was just here to make sure she didn't have a reaction.

Before you know it, it will become routine and be just another med that you give

your dr. I'm off to do Tristen's infusion right now!

le mom to:

Tristen 6: CVID, asthma, peanut allergy

Kaitlyn 8: healthy

________________________________

From: karen & kevin silk <kksilk526@...>

Sent: Thu, March 17, 2011 2:40:29 PM

Subject: Re: Re: newly diagnosed 5 year old

,

Thank you for the reasurance that we're on the right track. I guess you are

able to take the oral steroid while on the Vivaglobin? Does Makenzie have

asthma problems like Maddy also?? I am hearing more good things very quickly on

this site about the subq vs. IVIG as I'm trying to quickly familiarize myself

with the new medications. What side effects has your daugher experienced?? I

thought I had read somewhere that the down side of this at thome is the fact

that if you have a reaction, there is no doctor around. I'm guessing reactions

are uncommon. I was also wondering how long you had to be shown the procedure.

Sorry for all the questions. I'm sure I'll be pro soon

Re: newly diagnosed 5 year old

, absoultely very familiar, and it took 9 years to diagnose my daughter, it

was hell, be glad they caught it sooner and she is on her way to getting help,

Makenzie is a WHOLE NEW child since doing infusions, we have only had to use

steroids a couple times in the last year, Vivaglobin has made her life much

better we love doing subq at home weekly, there are way less side effects

than doing it every three to four weeks via an IV. Our Dr's let us pick, and

Kenzie chose subq.

Good luck, you ARE on the right path, you will soon see

Makenzie 10

21

[Guest guest]

Yes, Makenzie has bad asthma and reflux, allergies, etc, etc....we started

right with subq, we love it, there are little to no side effects, and the nurse

will stay and show you til you are comfy!! we have an epi pen for if there were

any serious reactions, but the only ones she has ever had were mild dizziness,

mild headache, that goes away by the next day. She is usually tired after we do

it, so we always do it on Friday nights. Our nurse was with us 6 weeks, but only

because she taught, me, my hubby and the neighbor to do it It really is

routine and easy

Keep us posted,

>

> ,

>

> Thank you for the reasurance that we're on the right track. I guess you are

able to take the oral steroid while on the Vivaglobin? Does Makenzie have

asthma problems like Maddy also?? I am hearing more good things very quickly on

this site about the subq vs. IVIG as I'm trying to quickly familiarize myself

with the new medications. What side effects has your daugher experienced?? I

thought I had read somewhere that the down side of this at thome is the fact

that if you have a reaction, there is no doctor around. I'm guessing reactions

are uncommon. I was also wondering how long you had to be shown the procedure.

Sorry for all the questions. I'm sure I'll be pro soon

>

>

> Re: newly diagnosed 5 year old

>

>

>

>

> , absoultely very familiar, and it took 9 years to diagnose my

daughter, it was hell, be glad they caught it sooner and she is on her way to

getting help, Makenzie is a WHOLE NEW child since doing infusions, we have only

had to use steroids a couple times in the last year, Vivaglobin has made her

life much better we love doing subq at home weekly, there are way less side

effects than doing it every three to four weeks via an IV. Our Dr's let us pick,

and Kenzie chose subq.

> Good luck, you ARE on the right path, you will soon see

>

> Makenzie 10

> 21

>

>

>

>

>

>

[Guest guest]

Yes, Makenzie has bad asthma and reflux, allergies, etc, etc....we started

right with subq, we love it, there are little to no side effects, and the nurse

will stay and show you til you are comfy!! we have an epi pen for if there were

any serious reactions, but the only ones she has ever had were mild dizziness,

mild headache, that goes away by the next day. She is usually tired after we do

it, so we always do it on Friday nights. Our nurse was with us 6 weeks, but only

because she taught, me, my hubby and the neighbor to do it It really is

routine and easy

Keep us posted,

>

> ,

>

> Thank you for the reasurance that we're on the right track. I guess you are

able to take the oral steroid while on the Vivaglobin? Does Makenzie have

asthma problems like Maddy also?? I am hearing more good things very quickly on

this site about the subq vs. IVIG as I'm trying to quickly familiarize myself

with the new medications. What side effects has your daugher experienced?? I

thought I had read somewhere that the down side of this at thome is the fact

that if you have a reaction, there is no doctor around. I'm guessing reactions

are uncommon. I was also wondering how long you had to be shown the procedure.

Sorry for all the questions. I'm sure I'll be pro soon

>

>

> Re: newly diagnosed 5 year old

>

>

>

>

> , absoultely very familiar, and it took 9 years to diagnose my

daughter, it was hell, be glad they caught it sooner and she is on her way to

getting help, Makenzie is a WHOLE NEW child since doing infusions, we have only

had to use steroids a couple times in the last year, Vivaglobin has made her

life much better we love doing subq at home weekly, there are way less side

effects than doing it every three to four weeks via an IV. Our Dr's let us pick,

and Kenzie chose subq.

> Good luck, you ARE on the right path, you will soon see

>

> Makenzie 10

> 21

>

>

>

>

>

>

[Guest guest]

I would also like to add, Makenzie chose subq after reviewing the info and dvd's

the Drs gave us, she said she would rather be poked weekly with mild side

effects, than be sick for up to a week after having IVIG, and sometimes right

before when your levels fall, she said she has been sick all her life and didnt

want to be sick to get better, if that makes sense the Dr's recommend it, the

levels are more constant and it has been the way to go!! again Kenzie was 9 when

she chose subq, she will be 11 this year

[Guest guest]

I would also like to add, Makenzie chose subq after reviewing the info and dvd's

the Drs gave us, she said she would rather be poked weekly with mild side

effects, than be sick for up to a week after having IVIG, and sometimes right

before when your levels fall, she said she has been sick all her life and didnt

want to be sick to get better, if that makes sense the Dr's recommend it, the

levels are more constant and it has been the way to go!! again Kenzie was 9 when

she chose subq, she will be 11 this year

[Guest guest]

That doesn't sound as scary as I was worrying about. She would rather have me

give her a needle any day than a stranger and I am totally comfortable doing

them myself after being shown how.

I guess depending on how each child feels, school is certainely an option if the

parents choose? Mads. is currently wearing a mask to to school and cannot go

full time with that on, it gets too hot and she hates it, but if she can get

better under control, I guess she could go??

This September is only kindergarden at a half day, so we could still use the

mask for a half day, it's not too long if we need to, however, I was wondering

what I would need to put in a 504 for her?? She can miss a lot of time for doc.

appts. and sick time. Not sure what else to expect with treaments etc. Any

help with this would be great because I need to do it soon. Kindergarten round

up is soon

Thanks,

karen

Re: newly diagnosed 5 year old

>

>

>

>

> , absoultely very familiar, and it took 9 years to diagnose my

daughter, it was hell, be glad they caught it sooner and she is on her way to

getting help, Makenzie is a WHOLE NEW child since doing infusions, we have only

had to use steroids a couple times in the last year, Vivaglobin has made her

life much better we love doing subq at home weekly, there are way less side

effects than doing it every three to four weeks via an IV. Our Dr's let us pick,

and Kenzie chose subq.

> Good luck, you ARE on the right path, you will soon see

>

> Makenzie 10

> 21

>

>

>

>

>

>

[Guest guest]

That doesn't sound as scary as I was worrying about. She would rather have me

give her a needle any day than a stranger and I am totally comfortable doing

them myself after being shown how.

I guess depending on how each child feels, school is certainely an option if the

parents choose? Mads. is currently wearing a mask to to school and cannot go

full time with that on, it gets too hot and she hates it, but if she can get

better under control, I guess she could go??

This September is only kindergarden at a half day, so we could still use the

mask for a half day, it's not too long if we need to, however, I was wondering

what I would need to put in a 504 for her?? She can miss a lot of time for doc.

appts. and sick time. Not sure what else to expect with treaments etc. Any

help with this would be great because I need to do it soon. Kindergarten round

up is soon

Thanks,

karen

Re: newly diagnosed 5 year old

>

>

>

>

> , absoultely very familiar, and it took 9 years to diagnose my

daughter, it was hell, be glad they caught it sooner and she is on her way to

getting help, Makenzie is a WHOLE NEW child since doing infusions, we have only

had to use steroids a couple times in the last year, Vivaglobin has made her

life much better we love doing subq at home weekly, there are way less side

effects than doing it every three to four weeks via an IV. Our Dr's let us pick,

and Kenzie chose subq.

> Good luck, you ARE on the right path, you will soon see

>

> Makenzie 10

> 21

>

>

>

>

>

>

[Guest guest]

I certainley think it's great to have options. I know different therapies are

more or less convienent for everyone. I do know that Maddy's hates when anyone

else touches her and screams regardless of all the numbing creme, but with me

she's really good. She trusts me, so I would prefer to do therapies at home.

That is just my on the surface opion. Haven't started yet, but I would guess

that would work best for her.

Re: newly diagnosed 5 year old

I would also like to add, Makenzie chose subq after reviewing the info and

dvd's the Drs gave us, she said she would rather be poked weekly with mild side

effects, than be sick for up to a week after having IVIG, and sometimes right

before when your levels fall, she said she has been sick all her life and didnt

want to be sick to get better, if that makes sense the Dr's recommend it, the

levels are more constant and it has been the way to go!! again Kenzie was 9 when

she chose subq, she will be 11 this year

[Guest guest]

I certainley think it's great to have options. I know different therapies are

more or less convienent for everyone. I do know that Maddy's hates when anyone

else touches her and screams regardless of all the numbing creme, but with me

she's really good. She trusts me, so I would prefer to do therapies at home.

That is just my on the surface opion. Haven't started yet, but I would guess

that would work best for her.

Re: newly diagnosed 5 year old

I would also like to add, Makenzie chose subq after reviewing the info and

dvd's the Drs gave us, she said she would rather be poked weekly with mild side

effects, than be sick for up to a week after having IVIG, and sometimes right

before when your levels fall, she said she has been sick all her life and didnt

want to be sick to get better, if that makes sense the Dr's recommend it, the

levels are more constant and it has been the way to go!! again Kenzie was 9 when

she chose subq, she will be 11 this year