Question

May 21, 2010

Our PA in SLC asked if we fed Londynn raw meat because she is so strong - I

tried bending over like she does in her cast keeping my hips to my shoulders

straight - couldn't do it - so i know she is getting a workout everytime she

bends over to pick something up. Our kids are so strong and resilient

>

> I agree! We def have a lil muscle baby! My husband is SO proud!LOL!! (he calls

the cast weight training)

>

> ________________________________

> From: Hyatt <heather@...>

> infantile scoliosis treatment

> Sent: Wed, May 19, 2010 12:41:54 PM

> Subject: RE: question

>

> Â

> We did in the beginning, but eventually stopped.Â Olivia had such a six pack,

that it was apparent that her core was very strong and that she was using most

all musclesâ€¦Gentle PT/yoga and stretching never hurts though!

> HRH

> Â

> From:infantile scoliosis treatment @groups. com [mailto:infantile_ scoliosis@

groups. com] On Behalf Of Medlin

> Sent: Wednesday, May 19, 2010 7:14 AM

> infantile scoliosis treatment @groups. com

> Subject: [infantile_scoliosi s] question

> Â

> Hey guys!

> Do any of you do like mad stretches or work the torso muscles on cast off

days?? I was just wondering because they dont have a chance to use those muscles

with the cast on....and how is the back suppose to hold the new spine in place

when in theory the muscles may be weaker from not being used.....

> Â

> Just wondering... .

> <this is what happens when I think about stuff toooooo long>\

> Â

>

> Logan's mama (45 standing down to 14 in first cast--11 months old)

> Â

>

May 21, 2010

Doc actually has a series of physical therapist/occupational therapists/developmental therapists that comes in weekly to work with him. They then gives us a simple exercise to work on with him for the next week. For example, last week was to get him to do a sort of pony ride straddling a single leg. Then we needed to lean him side to side to get him to use his core muscles to correct himself. This week our exercise is to work on rotational core muscles- we play toss the blocks into the bucket and just move the bucket to opposing sides of him, forcing him to twist in an opposing direction. Other exercises sets we've used were reaching skills to improve balance (usually by having him reach for bubbles or throw a beach ball over his head), and kneeling to

standing skills.Our PT is fantastic. She actually gives him a muscle tone assessment weekly and then transitions him from the last exercise into the new one. He's gone from being on par with a 6-9 month old (at 15months) to being on par with a 13 month old (at 16 months). She's very impressed with how hard he works himself.aFrom: Medlin <amanda.medlin@...>infantile scoliosis treatment Sent: Wed, May 19, 2010 9:14:25 AMSubject: question

Hey guys!

Do any of you do like mad stretches or work the torso muscles on cast off days?? I was just wondering because they dont have a chance to use those muscles with the cast on....and how is the back suppose to hold the new spine in place when in theory the muscles may be weaker from not being used.....

Just wondering... .

<this is what happens when I think about stuff toooooo long>\

Logan's mama (45 standing down to 14 in first cast--11 months old)

May 21, 2010

I personally think that with all of the medications we now have at our disposal the dangers in them are minimal in comparison to the alternative which is no treatment and death. I am a long term survivor of over 20 years and I remember when all we had was AZT and many friends died from so little medications. Many of the medications we take are fast tracked we have no other option. This is a fast killer with devastating infections that do the killing.

I would love to have had the opportunity to have well tested drugs to treat this killer but unfortunately we were not afforded that luxury. As for early treatment guidelines if they can treat early then that option is present. I remember when I was diagnosed in my first (one) month I went from HIV+ to AIDS because my t-cells dropped so fast. It was only then that I went on treatment. I still think would of?could of?should of? I know its a personal choice and no one will force a person to go on treatment. But I would have.

So many are still being infected and many are already resistant to some current medications at time of getting a Positive result. We are still on the forefront of medications for this disease. Maybe some day 10,20,30 years from now others will see us as the ones who suffered the side effects for the good of the next generation. Ok I am off my soapbox. Sorry to ramble.

love

FRANK

In a message dated 5/21/2010 1:13:33 P.M. US Mountain Standard Time, dahnild@... writes:

"The test and treat issue is being driven by epidemiology, and constrained by limits of policy. It isn't coming from the drug companies."

that MAY be true (people affiliated with drug companies sit on the review panels that decide these things, and significantly influence policy all throughout related decision-making processes, from the very bottom to the very top), but it also completely ignores the serious, known long-term side effects of current medications, and the the unknown long-term side effects of the newer medications, as well as ignoring the fact that we know very little about what to do to avoid and "treat" such side effects, some of which, in my opinion, are quite horrendous.

May 22, 2010

I am also a long-term survivor ('84), and am fully of the opinion that even the

AZT alone, back in the " bad old days " , would have had a much greater efficacy,

if it's usage had not initially been restricted to those who were already sick,

or rapidly approaching that state.

This is only my own personal experiences and opinion (meaning not a controlled,

double-blind study)... but I simply cannot believe you can give an entire class

of people (who are already suffering debilitating effects of this viral

infection), highly toxic drugs and expect an overwhelming success in recovery,

without incurring multiple, excessive and sometimes deadly, side-effects.

And in fact... in those days... we didn't see that overwhelming success. But as

I'm stating here, I believe it is PRECISELY because we didn't start treatment

early. You had to be very low in T-cells before you were ALLOWED to be treated.

Treatment early. The earlier, the better. My 2 cents...

>

> I personally think that with all of the medications we now have at our

> disposal the dangers in them are minimal in comparison to the alternative

> which is no treatment and death. I am a long term survivor of over 20 years

and

> I remember when all we had was AZT and many friends died from so little

> medications.

May 23, 2010

"I am also a long-term survivor ('84), and am fully of the opinion that even the AZT alone, back in the "bad old days", would have had a much greater efficacy, if it's usage had not initially been restricted to those who were already sick, or rapidly approaching that state."Given as monotherapy, as it was back in those dark days, resistance and drug failure were inevitable. The famous "Concord" study showed that patients taking AZT were clinically healthier than those not on drug for the time until failure occurred, and then, both groups had the same mortality.Like all of us, I know men who swear they are alive today because they got on AZT, and others who think they are alive because they didn't take it, and watched their friends died who did.Over the years, using lower doses of AZT and combining it with other classes of drugs has lead to the therapeutic miracle of HAART. For all the problems we have with it, we are alive to discuss the issues because of the incredible efficacy of these medications.JB

July 13, 2010

I do a few variations of soap using 32 oz olive oil and 4oz of castor oil. then

the lye and various liquids.

turns out great. as matter of fact it was told to me as the best starting

recipe as you dont have to worry about temps as they are liquid and at room temp

and if you buy the little bottles of castor from the store you dont have to

measure it.

recently i ran out of palm to make a recipe i have and checked things out and

found mango butter to be pretty close to it. at least that what the soap calc

said as far as qualities go. you might want to look into that as a switch maybe.

>

> I hope you all have fun at the gathering. Maybe someone can take the time to

> answer a question for me. I want to get away from palm oils because of

> environmental/ethical issues, even though they make the bar hard and lathery,

> etc. Has anyone ever tried olive oil, goat milk, lye and essential oils only?

> Please share your experiences with me. Thanks so much and enjoy the party!

>

> Maggie

> Central New York, USA

> www.maggiesfarminc.com

>

July 15, 2010

Hi there,

I personally don't know much about it, but when my daughter was getting casted

we were roomed with 3 adolescent girls all recovering from spinal surgeries and

one of the mothers was promoting VBS big time. Maybe Shriner's in Philly could

give you some good information on it, that's where we were.

-Ami

>

> Has anyone here heard anything about vertebral stapling surgery?

>

> Thanks,

>

> Nola

>

July 16, 2010

Hi Nola,

I personally don't know too much about it either, but I have found a lot of information and research online in the past. There are also sites and groups that focus on VBS. Some are postitive and some are negative (of course that's really the case with any treatment.) Shoot me an email if you want me to send you any links.~Noah 4 1/2 years old9 months of casting in SLC; 2 1/2 years of bracing; Currently treatment-free at 8*And Mariella 16 months old - resolved Infantile Scoliosis

infantile scoliosis treatment From: amibeautinet@...Date: Wed, 14 Jul 2010 23:49:31 +0000Subject: Re: Question

Hi there,I personally don't know much about it, but when my daughter was getting casted we were roomed with 3 adolescent girls all recovering from spinal surgeries and one of the mothers was promoting VBS big time. Maybe Shriner's in Philly could give you some good information on it, that's where we were. -Ami >> Has anyone here heard anything about vertebral stapling surgery? > > Thanks,> > Nola>

The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. Get busy.

July 21, 2010

Definitely ask the doctor, but I would be more worried about her getting

sick during those 10 days...a hospitalization could get expensive. That

was our fear when we continued our cobra at $1300 a month!

> Hi,

>

> Tristen has been doing SubQ for almost 2 years now every week. My husband

> just

> switched jobs and we will have 10 days without medical coverage (we didn't

> realize this until he started the job that insurance didn't start for a

> month

> after hire). I'm wondering what to do about the 1 week we won't be

> covered.

> What will happen if Tristen misses 1 week of infusions? Should I spend

> the

> $1100 for the month of cobra for the 10 days? Should I just pay for the 1

> week

> of infusion meds?

>

> I do have an appt with her immuno on Friday to discuss this and see what

> he

> says, but was just wondering if anyone has skipped a week of infusions and

> what

> that would cause.

>

> Thanks,

> le

>

July 21, 2010

This is my own personal experience and as usual check with your Dr. We have

skipped a week before for various reasons over the past 3 years and missing 1

dose is not going to cause major issues, missing 3? ok, yeah but 1? nope, don't

even worry about it unless your child is having infections left and right

anyway. Just be aware that you may have to fight the new insurance co to get

scig covered as they don't like paying for it due to costs. If your using a

Baxter product like Gammagard they have a program just for these sorts of

situations, might want to look into it.

________________________________

From: le Mina <daniellemina@...>

Sent: Wed, July 21, 2010 1:38:48 PM

Subject: Question

Hi,

Tristen has been doing SubQ for almost 2 years now every week. My husband just

switched jobs and we will have 10 days without medical coverage (we didn't

realize this until he started the job that insurance didn't start for a month

after hire). I'm wondering what to do about the 1 week we won't be covered.

What will happen if Tristen misses 1 week of infusions? Should I spend the

$1100 for the month of cobra for the 10 days? Should I just pay for the 1 week

of infusion meds?

I do have an appt with her immuno on Friday to discuss this and see what he

says, but was just wondering if anyone has skipped a week of infusions and what

that would cause.

Thanks,

le

------------------------------------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

July 21, 2010

I agree with Mindy.... You might want to make a call to your local Health Dept

or Human Service Agency also because they may be able to help cover at least a

portion of the cost.

From: mindy@... <mindy@...>

Subject: Re: Question

Date: Wednesday, July 21, 2010, 4:52 PM

Â

Definitely ask the doctor, but I would be more worried about her getting

sick during those 10 days...a hospitalization could get expensive. That

was our fear when we continued our cobra at $1300 a month!

> Hi,

>

> Tristen has been doing SubQ for almost 2 years now every week. My husband

> just

> switched jobs and we will have 10 days without medical coverage (we didn't

> realize this until he started the job that insurance didn't start for a

> month

> after hire). I'm wondering what to do about the 1 week we won't be

> covered.

> What will happen if Tristen misses 1 week of infusions? Should I spend

> the

> $1100 for the month of cobra for the 10 days? Should I just pay for the 1

> week

> of infusion meds?

>

> I do have an appt with her immuno on Friday to discuss this and see what

> he

> says, but was just wondering if anyone has skipped a week of infusions and

> what

> that would cause.

>

> Thanks,

> le

>

July 21, 2010

There is a patient assistance program that will help with the medication. They

just can't supply you with the supplies you need to infuse, just the medication.

If you'd like more info, email me and I can give you the info that you will need

and contact person. My husband was laid off and then started up his own

business. I had to pay $1200/month for cobra for 18 months before we were able

to pick up another insurance plan. We had to exhaust our cobra before we could

do anything else. We had to use the patient assistance program for I think 3

months. Let me know if you'd like more info. It wouldn't cost anything for the

medications. It will save you that month of cobra payments.

Take care,

---- aymee <aymeewelch@...> wrote:

> I agree with Mindy.... You might want to make a call to your local Health Dept

or Human Service Agency also because they may be able to help cover at least a

portion of the cost.

>

> From: mindy@... <mindy@...>

> Subject: Re: Question

>

> Date: Wednesday, July 21, 2010, 4:52 PM

>

> Â

>

> Definitely ask the doctor, but I would be more worried about her getting

> sick during those 10 days...a hospitalization could get expensive. That

> was our fear when we continued our cobra at $1300 a month!

>

> > Hi,

> >

> > Tristen has been doing SubQ for almost 2 years now every week. My husband

> > just

> > switched jobs and we will have 10 days without medical coverage (we didn't

> > realize this until he started the job that insurance didn't start for a

> > month

> > after hire). I'm wondering what to do about the 1 week we won't be

> > covered.

> > What will happen if Tristen misses 1 week of infusions? Should I spend

> > the

> > $1100 for the month of cobra for the 10 days? Should I just pay for the 1

> > week

> > of infusion meds?

> >

> > I do have an appt with her immuno on Friday to discuss this and see what

> > he

> > says, but was just wondering if anyone has skipped a week of infusions and

> > what

> > that would cause.

> >

> > Thanks,

> > le

> >

>

July 22, 2010

We are going through the same problem right now. We use Vivaglobin & amp; from

what I understand for every 3 months of paid Viva should you have a lapse in

coverage they will give you one month free. I have calls into both the Company

& amp; our home health care. What our home health care did for us was send us all

the supplies we needed , so that we would @ least not have to pay for them

during this lapse in coverage. My son has an active infection right now, so our

Immuno said it would be best for us not to miss a dose. My son was also put on

antibiotics as a precautionary measure. & nbsp;

Good Luck,

-- Sent from my Palm Pre

On Jul 21, 2010 1:58 PM, Madden & lt;bluetaelon@... & gt; wrote:

& nbsp;

This is my own personal experience and as usual check with your Dr. We have

skipped a week before for various reasons over the past 3 years and missing 1

dose is not going to cause major issues, missing 3? ok, yeah but 1? nope, don't

even worry about it unless your child is having infections left and right

anyway. Just be aware that you may have to fight the new insurance co to get

scig covered as they don't like paying for it due to costs. If your using a

Baxter product like Gammagard they have a program just for these sorts of

situations, might want to look into it.

________________________________

From: le Mina & lt;daniellemina@... & gt;

Sent: Wed, July 21, 2010 1:38:48 PM

Subject: Question

Hi,

Tristen has been doing SubQ for almost 2 years now every week. My husband just

switched jobs and we will have 10 days without medical coverage (we didn't

realize this until he started the job that insurance didn't start for a month

after hire). I'm wondering what to do about the 1 week we won't be covered.

What will happen if Tristen misses 1 week of infusions? Should I spend the

$1100 for the month of cobra for the 10 days? Should I just pay for the 1 week

of infusion meds?

I do have an appt with her immuno on Friday to discuss this and see what he

says, but was just wondering if anyone has skipped a week of infusions and what

that would cause.

Thanks,

le

------------------------------------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

July 22, 2010

,

If you want, I can give you the contact person I dealt with to get the

vivaglobin from. There were no restrictions on how many months we could get.

If I still needed it, all I had to do was call her and tell her I needed another

month. Let me know if you want the contact info.

Take care,

---- <tryann69@...> wrote:

> We are going through the same problem right now. We use Vivaglobin & amp; from

what I understand for every 3 months of paid Viva should you have a lapse in

coverage they will give you one month free. I have calls into both the Company

& amp; our home health care. What our home health care did for us was send us all

the supplies we needed , so that we would @ least not have to pay for them

during this lapse in coverage. My son has an active infection right now, so our

Immuno said it would be best for us not to miss a dose. My son was also put on

antibiotics as a precautionary measure. & nbsp;

>

> Good Luck,

>

> -- Sent from my Palm Pre

> On Jul 21, 2010 1:58 PM, Madden <bluetaelon@...> wrote:

>

> & nbsp;

>

> This is my own personal experience and as usual check with your Dr. We have

>

> skipped a week before for various reasons over the past 3 years and missing 1

>

> dose is not going to cause major issues, missing 3? ok, yeah but 1? nope,

don't

>

> even worry about it unless your child is having infections left and right

>

> anyway. Just be aware that you may have to fight the new insurance co to get

>

> scig covered as they don't like paying for it due to costs. If your using a

>

> Baxter product like Gammagard they have a program just for these sorts of

>

> situations, might want to look into it.

>

> ________________________________

>

> From: le Mina <daniellemina@...>

>

> Sent: Wed, July 21, 2010 1:38:48 PM

>

> Subject: Question

>

> Hi,

>

> Tristen has been doing SubQ for almost 2 years now every week. My husband

just

>

> switched jobs and we will have 10 days without medical coverage (we didn't

>

> realize this until he started the job that insurance didn't start for a month

>

> after hire). I'm wondering what to do about the 1 week we won't be covered.

>

> What will happen if Tristen misses 1 week of infusions? Should I spend the

>

> $1100 for the month of cobra for the 10 days? Should I just pay for the 1

week

>

> of infusion meds?

>

> I do have an appt with her immuno on Friday to discuss this and see what he

>

> says, but was just wondering if anyone has skipped a week of infusions and

what

>

> that would cause.

>

> Thanks,

>

> le

>

> ------------------------------------

>

> This forum is open to parents and caregivers of children diagnosed with a

>

> Primary Immune Deficiency. Opinions or medical advice stated here are the

sole

>

> responsibility of the poster and should not be taken as professional advice.

>

> To unsubscribe -unsubscribegroups (DOT)

>

> To search group archives go to:

>

> /messages

July 22, 2010

,

I would really appreciate the information. & nbsp;

Thank you,

-- Sent from my Palm Pre

On Jul 22, 2010 8:28 AM, Bfredrickson@...

& lt;Bfredrickson@... & gt; wrote:

& nbsp;

,

If you want, I can give you the contact person I dealt with to get the

vivaglobin from. There were no restrictions on how many months we could get.

If I still needed it, all I had to do was call her and tell her I needed another

month. Let me know if you want the contact info.

Take care,

---- & lt;tryann69@... & gt; wrote:

& gt; We are going through the same problem right now. We use Vivaglobin

& amp;amp; from what I understand for every 3 months of paid Viva should you have

a lapse in coverage they will give you one month free. I have calls into both

the Company & amp;amp; our home health care. What our home health care did for us

was send us all the supplies we needed , so that we would @ least not have to

pay for them during this lapse in coverage. My son has an active infection right

now, so our Immuno said it would be best for us not to miss a dose. My son was

also put on antibiotics as a precautionary measure. & amp;nbsp;

& gt;

& gt; Good Luck,

& gt;

& gt; -- Sent from my Palm Pre

& gt; On Jul 21, 2010 1:58 PM, Madden & lt;bluetaelon@... & gt; wrote:

& gt;

& gt; & amp;nbsp;

& gt;

& gt; This is my own personal experience and as usual check with your Dr. We have

& gt;

& gt; skipped a week before for various reasons over the past 3 years and missing

1

& gt;

& gt; dose is not going to cause major issues, missing 3? ok, yeah but 1? nope,

don't

& gt;

& gt; even worry about it unless your child is having infections left and right

& gt;

& gt; anyway. Just be aware that you may have to fight the new insurance co to

get

& gt;

& gt; scig covered as they don't like paying for it due to costs. If your using a

& gt;

& gt; Baxter product like Gammagard they have a program just for these sorts of

& gt;

& gt; situations, might want to look into it.

& gt;

& gt; ________________________________

& gt;

& gt; From: le Mina & lt;daniellemina@... & gt;

& gt;

& gt; Sent: Wed, July 21, 2010 1:38:48 PM

& gt;

& gt; Subject: Question

& gt;

& gt; Hi,

& gt;

& gt; Tristen has been doing SubQ for almost 2 years now every week. My husband

just

& gt;

& gt; switched jobs and we will have 10 days without medical coverage (we didn't

& gt;

& gt; realize this until he started the job that insurance didn't start for a

month

& gt;

& gt; after hire). I'm wondering what to do about the 1 week we won't be

covered.

& gt;

& gt; What will happen if Tristen misses 1 week of infusions? Should I spend the

& gt;

& gt; $1100 for the month of cobra for the 10 days? Should I just pay for the 1

week

& gt;

& gt; of infusion meds?

& gt;

& gt; I do have an appt with her immuno on Friday to discuss this and see what he

& gt;

& gt; says, but was just wondering if anyone has skipped a week of infusions and

what

& gt;

& gt; that would cause.

& gt;

& gt; Thanks,

& gt;

& gt; le

& gt;

& gt; ------------------------------------

& gt;

& gt; This forum is open to parents and caregivers of children diagnosed with a

& gt;

& gt; Primary Immune Deficiency. Opinions or medical advice stated here are the

sole

& gt;

& gt; responsibility of the poster and should not be taken as professional

advice.

& gt;

& gt; To unsubscribe -unsubscribegroups (DOT)

& gt;

& gt; To search group archives go to:

& gt;

& gt; /messages

July 23, 2010

,

The info that I have is CSL Behring Patient Assistance Program and their number

is 888-415-2167. The girl that helped me was Mainor. let me know if

you need anything esle. Just explain the situation to them and see what they

can do.

Take care,

---- <tryann69@...> wrote:

> ,

> I would really appreciate the information. & nbsp;

>

> Thank you,

>

> -- Sent from my Palm Pre

> On Jul 22, 2010 8:28 AM, Bfredrickson@...

<Bfredrickson@...> wrote:

>

> & nbsp;

>

> ,

>

> If you want, I can give you the contact person I dealt with to get the

vivaglobin from. There were no restrictions on how many months we could get.

If I still needed it, all I had to do was call her and tell her I needed another

month. Let me know if you want the contact info.

>

> Take care,

>

> ---- <tryann69@...> wrote:

>

> > We are going through the same problem right now. We use Vivaglobin & amp;amp;

from what I understand for every 3 months of paid Viva should you have a lapse

in coverage they will give you one month free. I have calls into both the

Company & amp;amp; our home health care. What our home health care did for us was

send us all the supplies we needed , so that we would @ least not have to pay

for them during this lapse in coverage. My son has an active infection right

now, so our Immuno said it would be best for us not to miss a dose. My son was

also put on antibiotics as a precautionary measure. & amp;nbsp;

>

> >

>

> > Good Luck,

>

> >

>

> >

>

> >

>

> >

>

> > -- Sent from my Palm Pre

>

> > On Jul 21, 2010 1:58 PM, Madden <bluetaelon@...> wrote:

>

> >

>

> >

>

> > & amp;nbsp;

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> > This is my own personal experience and as usual check with your Dr. We have

>

> >

>

> > skipped a week before for various reasons over the past 3 years and missing

1

>

> >

>

> > dose is not going to cause major issues, missing 3? ok, yeah but 1? nope,

don't

>

> >

>

> > even worry about it unless your child is having infections left and right

>

> >

>

> > anyway. Just be aware that you may have to fight the new insurance co to get

>

> >

>

> > scig covered as they don't like paying for it due to costs. If your using a

>

> >

>

> > Baxter product like Gammagard they have a program just for these sorts of

>

> >

>

> > situations, might want to look into it.

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> > ________________________________

>

> >

>

> > From: le Mina <daniellemina@...>

>

> >

>

> >

>

> >

>

> > Sent: Wed, July 21, 2010 1:38:48 PM

>

> >

>

> > Subject: Question

>

> >

>

> >

>

> >

>

> > Hi,

>

> >

>

> >

>

> >

>

> > Tristen has been doing SubQ for almost 2 years now every week. My husband

just

>

> >

>

> > switched jobs and we will have 10 days without medical coverage (we didn't

>

> >

>

> > realize this until he started the job that insurance didn't start for a

month

>

> >

>

> > after hire). I'm wondering what to do about the 1 week we won't be

covered.

>

> >

>

> > What will happen if Tristen misses 1 week of infusions? Should I spend the

>

> >

>

> > $1100 for the month of cobra for the 10 days? Should I just pay for the 1

week

>

> >

>

> > of infusion meds?

>

> >

>

> >

>

> >

>

> > I do have an appt with her immuno on Friday to discuss this and see what he

>

> >

>

> > says, but was just wondering if anyone has skipped a week of infusions and

what

>

> >

>

> > that would cause.

>

> >

>

> >

>

> >

>

> > Thanks,

>

> >

>

> > le

>

> >

>

> >

>

> >

>

> > ------------------------------------

>

> >

>

> >

>

> >

>

> > This forum is open to parents and caregivers of children diagnosed with a

>

> >

>

> > Primary Immune Deficiency. Opinions or medical advice stated here are the

sole

>

> >

>

> > responsibility of the poster and should not be taken as professional advice.

>

> >

>

> >

>

> >

>

> > To unsubscribe -unsubscribegroups (DOT)

>

> >

>

> > To search group archives go to:

>

> >

>

> > /messages

July 26, 2010

,

Thank you, I really appreciate the information. & nbsp;

-- Sent from my Palm Pre

On Jul 23, 2010 5:03 PM, Bfredrickson@...

& lt;Bfredrickson@... & gt; wrote:

& nbsp;

,

The info that I have is CSL Behring Patient Assistance Program and their number

is 888-415-2167. The girl that helped me was Mainor. let me know if

you need anything esle. Just explain the situation to them and see what they

can do.

Take care,

---- & lt;tryann69@... & gt; wrote:

& gt; ,

& gt; I would really appreciate the information. & amp;nbsp;

& gt;

& gt; Thank you,

& gt;

& gt; -- Sent from my Palm Pre

& gt; On Jul 22, 2010 8:28 AM, Bfredrickson@...

& lt;Bfredrickson@... & gt; wrote:

& gt;

& gt; & amp;nbsp;

& gt;

& gt; ,

& gt;

& gt; If you want, I can give you the contact person I dealt with to get the

vivaglobin from. There were no restrictions on how many months we could get.

If I still needed it, all I had to do was call her and tell her I needed another

month. Let me know if you want the contact info.

& gt;

& gt; Take care,

& gt;

& gt; ---- & lt;tryann69@... & gt; wrote:

& gt;

& gt; & gt; We are going through the same problem right now. We use Vivaglobin

& amp;amp;amp; from what I understand for every 3 months of paid Viva should you

have a lapse in coverage they will give you one month free. I have calls into

both the Company & amp;amp;amp; our home health care. What our home health care

did for us was send us all the supplies we needed , so that we would @ least not

have to pay for them during this lapse in coverage. My son has an active

infection right now, so our Immuno said it would be best for us not to miss a

dose. My son was also put on antibiotics as a precautionary

measure. & amp;amp;nbsp;

& gt;

& gt; & gt;

& gt;

& gt; & gt; Good Luck,

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; -- Sent from my Palm Pre

& gt;

& gt; & gt; On Jul 21, 2010 1:58 PM, Madden & lt;bluetaelon@... & gt;

wrote:

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; & amp;amp;nbsp;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; This is my own personal experience and as usual check with your Dr. We

have

& gt;

& gt; & gt;

& gt;

& gt; & gt; skipped a week before for various reasons over the past 3 years and

missing 1

& gt;

& gt; & gt;

& gt;

& gt; & gt; dose is not going to cause major issues, missing 3? ok, yeah but 1?

nope, don't

& gt;

& gt; & gt;

& gt;

& gt; & gt; even worry about it unless your child is having infections left and

right

& gt;

& gt; & gt;

& gt;

& gt; & gt; anyway. Just be aware that you may have to fight the new insurance co

to get

& gt;

& gt; & gt;

& gt;

& gt; & gt; scig covered as they don't like paying for it due to costs. If your

using a

& gt;

& gt; & gt;

& gt;

& gt; & gt; Baxter product like Gammagard they have a program just for these sorts

of

& gt;

& gt; & gt;

& gt;

& gt; & gt; situations, might want to look into it.

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; ________________________________

& gt;

& gt; & gt;

& gt;

& gt; & gt; From: le Mina & lt;daniellemina@... & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; Sent: Wed, July 21, 2010 1:38:48 PM

& gt;

& gt; & gt;

& gt;

& gt; & gt; Subject: Question

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; Hi,

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; Tristen has been doing SubQ for almost 2 years now every week. My

husband just

& gt;

& gt; & gt;

& gt;

& gt; & gt; switched jobs and we will have 10 days without medical coverage (we

didn't

& gt;

& gt; & gt;

& gt;

& gt; & gt; realize this until he started the job that insurance didn't start for

a month

& gt;

& gt; & gt;

& gt;

& gt; & gt; after hire). I'm wondering what to do about the 1 week we won't be

covered.

& gt;

& gt; & gt;

& gt;

& gt; & gt; What will happen if Tristen misses 1 week of infusions? Should I

spend the

& gt;

& gt; & gt;

& gt;

& gt; & gt; $1100 for the month of cobra for the 10 days? Should I just pay for

the 1 week

& gt;

& gt; & gt;

& gt;

& gt; & gt; of infusion meds?

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; I do have an appt with her immuno on Friday to discuss this and see

what he

& gt;

& gt; & gt;

& gt;

& gt; & gt; says, but was just wondering if anyone has skipped a week of infusions

and what

& gt;

& gt; & gt;

& gt;

& gt; & gt; that would cause.

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; Thanks,

& gt;

& gt; & gt;

& gt;

& gt; & gt; le

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; ------------------------------------

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; This forum is open to parents and caregivers of children diagnosed

with a

& gt;

& gt; & gt;

& gt;

& gt; & gt; Primary Immune Deficiency. Opinions or medical advice stated here are

the sole

& gt;

& gt; & gt;

& gt;

& gt; & gt; responsibility of the poster and should not be taken as professional

advice.

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; To unsubscribe -unsubscribegroups (DOT)

& gt;

& gt; & gt;

& gt;

& gt; & gt; To search group archives go to:

& gt;

& gt; & gt;

& gt;

& gt; & gt; /messages

July 26, 2010

,

Thank you, I really appreciate the information. & nbsp;

-- Sent from my Palm Pre

On Jul 23, 2010 5:03 PM, Bfredrickson@...

& lt;Bfredrickson@... & gt; wrote:

& nbsp;

,

The info that I have is CSL Behring Patient Assistance Program and their number

is 888-415-2167. The girl that helped me was Mainor. let me know if

you need anything esle. Just explain the situation to them and see what they

can do.

Take care,

---- & lt;tryann69@... & gt; wrote:

& gt; ,

& gt; I would really appreciate the information. & amp;nbsp;

& gt;

& gt; Thank you,

& gt;

& gt; -- Sent from my Palm Pre

& gt; On Jul 22, 2010 8:28 AM, Bfredrickson@...

& lt;Bfredrickson@... & gt; wrote:

& gt;

& gt; & amp;nbsp;

& gt;

& gt; ,

& gt;

& gt; If you want, I can give you the contact person I dealt with to get the

vivaglobin from. There were no restrictions on how many months we could get.

If I still needed it, all I had to do was call her and tell her I needed another

month. Let me know if you want the contact info.

& gt;

& gt; Take care,

& gt;

& gt; ---- & lt;tryann69@... & gt; wrote:

& gt;

& gt; & gt; We are going through the same problem right now. We use Vivaglobin

& amp;amp;amp; from what I understand for every 3 months of paid Viva should you

have a lapse in coverage they will give you one month free. I have calls into

both the Company & amp;amp;amp; our home health care. What our home health care

did for us was send us all the supplies we needed , so that we would @ least not

have to pay for them during this lapse in coverage. My son has an active

infection right now, so our Immuno said it would be best for us not to miss a

dose. My son was also put on antibiotics as a precautionary

measure. & amp;amp;nbsp;

& gt;

& gt; & gt;

& gt;

& gt; & gt; Good Luck,

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; -- Sent from my Palm Pre

& gt;

& gt; & gt; On Jul 21, 2010 1:58 PM, Madden & lt;bluetaelon@... & gt;

wrote:

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; & amp;amp;nbsp;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; This is my own personal experience and as usual check with your Dr. We

have

& gt;

& gt; & gt;

& gt;

& gt; & gt; skipped a week before for various reasons over the past 3 years and

missing 1

& gt;

& gt; & gt;

& gt;

& gt; & gt; dose is not going to cause major issues, missing 3? ok, yeah but 1?

nope, don't

& gt;

& gt; & gt;

& gt;

& gt; & gt; even worry about it unless your child is having infections left and

right

& gt;

& gt; & gt;

& gt;

& gt; & gt; anyway. Just be aware that you may have to fight the new insurance co

to get

& gt;

& gt; & gt;

& gt;

& gt; & gt; scig covered as they don't like paying for it due to costs. If your

using a

& gt;

& gt; & gt;

& gt;

& gt; & gt; Baxter product like Gammagard they have a program just for these sorts

of

& gt;

& gt; & gt;

& gt;

& gt; & gt; situations, might want to look into it.

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; ________________________________

& gt;

& gt; & gt;

& gt;

& gt; & gt; From: le Mina & lt;daniellemina@... & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; Sent: Wed, July 21, 2010 1:38:48 PM

& gt;

& gt; & gt;

& gt;

& gt; & gt; Subject: Question

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; Hi,

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; Tristen has been doing SubQ for almost 2 years now every week. My

husband just

& gt;

& gt; & gt;

& gt;

& gt; & gt; switched jobs and we will have 10 days without medical coverage (we

didn't

& gt;

& gt; & gt;

& gt;

& gt; & gt; realize this until he started the job that insurance didn't start for

a month

& gt;

& gt; & gt;

& gt;

& gt; & gt; after hire). I'm wondering what to do about the 1 week we won't be

covered.

& gt;

& gt; & gt;

& gt;

& gt; & gt; What will happen if Tristen misses 1 week of infusions? Should I

spend the

& gt;

& gt; & gt;

& gt;

& gt; & gt; $1100 for the month of cobra for the 10 days? Should I just pay for

the 1 week

& gt;

& gt; & gt;

& gt;

& gt; & gt; of infusion meds?

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; I do have an appt with her immuno on Friday to discuss this and see

what he

& gt;

& gt; & gt;

& gt;

& gt; & gt; says, but was just wondering if anyone has skipped a week of infusions

and what

& gt;

& gt; & gt;

& gt;

& gt; & gt; that would cause.

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; Thanks,

& gt;

& gt; & gt;

& gt;

& gt; & gt; le

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; ------------------------------------

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; This forum is open to parents and caregivers of children diagnosed

with a

& gt;

& gt; & gt;

& gt;

& gt; & gt; Primary Immune Deficiency. Opinions or medical advice stated here are

the sole

& gt;

& gt; & gt;

& gt;

& gt; & gt; responsibility of the poster and should not be taken as professional

advice.

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt;

& gt;

& gt; & gt; To unsubscribe -unsubscribegroups (DOT)

& gt;

& gt; & gt;

& gt;

& gt; & gt; To search group archives go to:

& gt;

& gt; & gt;

& gt;

& gt; & gt; /messages

September 15, 2010

It's possible that his head is being held differently or even for kids with scoli to hunch their shoulders (which also shortens the appearance of the neck).Doc used to have NO neck- lol. Now, it's nice and longer- he just hunches his shoulders higher once in a while and his little neck hides again. lol!aFrom: Medlin <amanda.medlin@...>To:

infantile scoliosis treatment Sent: Wed, September 15, 2010 7:55:18 AMSubject: question

Im just wondering...

Is it common for children with scoliosis to have a shorter neck? I noticed Logan's was shorter than his brothers....but I didnt know if was because of his condition or was it just him.....

thanks

Logan's mama (45 down to 0 in 4th cast, 15 months old)

October 14, 2010

I think it is every docs discretion. Londynn was supposed to go into a brace

after her 3rd cast but the doctor felt that she was making such good progress

casting that he put a 4th cast on her - she is at a zero in this cast and will

get her brace on November 23rd.

>

> Hey everyone---

> I was just wondering...what or is there a pretty standard rule on when kids go

> into a brace? or is it totally dr discretion? I didnt know. Thanks everyone =)

>

> Logan's mama (45 down to 0 in 4th cast, 16 months old)

>

October 14, 2010

Hi ,

I think its totally up to your child, your doc, and your situation. Typically,

the child should stop casting once you have achieved correction (or the most

correction you'll get). In my case, my daughter achieved correction (0 degrees)

after 3 casts so we stopped there.

Hope this helps!

Dianna (mommy to Marcela, 2 1/2 years old, currently cast free (and straight!)

after 3 casts)

>

> Hey everyone---

> I was just wondering...what or is there a pretty standard rule on when kids go

> into a brace? or is it totally dr discretion? I didnt know. Thanks everyone =)

>

> Logan's mama (45 down to 0 in 4th cast, 16 months old)

>

October 14, 2010

Hey !

that does help....did you guys go into a brace afterwards...or is the brace for if they dont hold the correction? I didnt know if going into a brace was standard after casting.

Logan's mama (45 down to 0 in 4th cast, 16 months old)

From: diannapiquet <diannapiquet@...>infantile scoliosis treatment Sent: Thu, October 14, 2010 8:27:20 AMSubject: Re: question

Hi , I think its totally up to your child, your doc, and your situation. Typically, the child should stop casting once you have achieved correction (or the most correction you'll get). In my case, my daughter achieved correction (0 degrees) after 3 casts so we stopped there.Hope this helps!Dianna (mommy to Marcela, 2 1/2 years old, currently cast free (and straight!) after 3 casts)>> Hey everyone---> I was just wondering...what or is there a pretty standard rule on when kids go > into a brace? or is it totally dr discretion? I didnt know. Thanks everyone =)> > Logan's mama (45 down to 0 in 4th cast, 16 months

old)>

October 14, 2010

Hi ,

Its def up to the doc. If the doc is experienced and is practicing Dr.

Mehtas Early Treatment principles he/she will focus primarily on

derotating the curve. Once this process begins the Cobb angle is easier

to correct and usually follows right along in correcting. The goal is to

treat early and correct rotation as much as possible for ET to be

effective and for correction to be permanent. Thats why the " Early

Treatment, " terminology is so important. Its Early Treatment and

harnessing the childs rapid phase of growth that is training these young

spines to grow straight. Its not just a cast)...As we know, every child

is so very different.......Ive seen children transition to bracing

anywhere from 0 degrees to 20 degrees. This really depends on rotation

correction, cobb, if the childs syndromic, etc.....Its multi factorial.

Thats why it is so very important that the docs follow Dr. M's ET

principles. If a cast is removed prematurely, or isnt applied properly

with good purchase on pelvis, appropriate windows (which do address

rotation), correct frame/materials, etc.....Time may be wasted. And, we

know that our kiddos only have a window of time to benefit from this

gentle, corrective treatment.

Sincerely,

HRH

> Hey everyone---

> I was just wondering...what or is there a pretty standard rule on when

> kids go

> into a brace? or is it totally dr discretion? I didnt know. Thanks

> everyone =)

>

> Logan's mama (45 down to 0 in 4th cast, 16 months old)

>

October 14, 2010

oh okay---thanks !

Logan's mama (45 down to 0 in 4th cast, 16 months old)

From: "heather@..." <heather@...>infantile scoliosis treatment Sent: Thu, October 14, 2010 9:27:57 AMSubject: Re: question

Hi ,Its def up to the doc. If the doc is experienced and is practicing Dr.Mehtas Early Treatment principles he/she will focus primarily onderotating the curve. Once this process begins the Cobb angle is easierto correct and usually follows right along in correcting. The goal is totreat early and correct rotation as much as possible for ET to beeffective and for correction to be permanent. Thats why the "EarlyTreatment," terminology is so important. Its Early Treatment andharnessing the childs rapid phase of growth that is training these youngspines to grow straight. Its not just a cast)...As we know, every childis so very different.......Ive seen children transition to bracinganywhere from 0 degrees to 20 degrees. This really depends on rotationcorrection, cobb, if the childs syndromic, etc.....Its multi factorial.Thats why it is so very important that the docs follow Dr. M's ETprinciples.

If a cast is removed prematurely, or isnt applied properlywith good purchase on pelvis, appropriate windows (which do addressrotation), correct frame/materials, etc.....Time may be wasted. And, weknow that our kiddos only have a window of time to benefit from thisgentle, corrective treatment.Sincerely,HRH> Hey everyone---> I was just wondering...what or is there a pretty standard rule on when> kids go> into a brace? or is it totally dr discretion? I didnt know. Thanks> everyone =)> > Logan's mama (45 down to 0 in 4th cast, 16 months old)>>>

October 14, 2010

oh okay---thanks !

Logan's mama (45 down to 0 in 4th cast, 16 months old)

From: "heather@..." <heather@...>infantile scoliosis treatment Sent: Thu, October 14, 2010 9:27:57 AMSubject: Re: question

Hi ,Its def up to the doc. If the doc is experienced and is practicing Dr.Mehtas Early Treatment principles he/she will focus primarily onderotating the curve. Once this process begins the Cobb angle is easierto correct and usually follows right along in correcting. The goal is totreat early and correct rotation as much as possible for ET to beeffective and for correction to be permanent. Thats why the "EarlyTreatment," terminology is so important. Its Early Treatment andharnessing the childs rapid phase of growth that is training these youngspines to grow straight. Its not just a cast)...As we know, every childis so very different.......Ive seen children transition to bracinganywhere from 0 degrees to 20 degrees. This really depends on rotationcorrection, cobb, if the childs syndromic, etc.....Its multi factorial.Thats why it is so very important that the docs follow Dr. M's ETprinciples.

If a cast is removed prematurely, or isnt applied properlywith good purchase on pelvis, appropriate windows (which do addressrotation), correct frame/materials, etc.....Time may be wasted. And, weknow that our kiddos only have a window of time to benefit from thisgentle, corrective treatment.Sincerely,HRH> Hey everyone---> I was just wondering...what or is there a pretty standard rule on when> kids go> into a brace? or is it totally dr discretion? I didnt know. Thanks> everyone =)> > Logan's mama (45 down to 0 in 4th cast, 16 months old)>>>

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