Re: Hello/questions/update here/Molluscum/

[Guest guest]

Pattie,

Thanks for the reminder on covering them! We finally have Reagon to a point

that I think trying to cover them would be doable. They started on her neck and

have worked their way down her body. She now only has about 3 on her side, but

a bunch on her legs. I have noticed that they seem to be worse on her inner

thighs and have read that it is from the legs touching together (especially at

night). I am going to try covering the ones on her inner thighs to keep them

from touching together and see if that works. I tried covering them once when

she was younger, but she had soooo many and they were in more visible places

that she would just pull the stuff off. I had forgotten all about that

technique though. Worth a shot again....especially during the winter when she

is in pants all the time anyway.

Thanks & so glad to hear things are going so wonderful for your family! I'm

always amazed at God's faithfulness!!

Becki

Hello/questions/update here/Molluscum/

Hi to all- I have two boys with Shwachman-Diamond Syndrome (SDS) who also

have low immunoglobulins. They have been getting IVIG for 3 years now and while

several doctors feel their low immunoglobulins are not related to them having

SDS they have never given them any other diagnosis other THAN SDS. Our family

website: www.shwachman.50megs.com was deficient in total IgG and in

subclasses 1 & 4 (going on memory) ph was low on total IgG and never had his

subclasses tested. Last year we were considering going to home infusions, then

ph had a reaction, hubby had just gotten a job after being laid off and we'd

just moved, ph landed in the hospital.....and the insurance gave us a

hassle...so after all of that we needed to sit back and go with the status quo!

I'm sure you can all relate! We had looked into it and the home health people

said they would only try twice to get a line in for ph and then we'd have to

go to the hospital, so yet another reason not to switch to home infusions. (He

sometimes takes up to 11 pokes, and long story-- but because of their " issues "

they can't have ports). This past week I contacted NuFactor about doing SubQ at

home and they have been wonderful trying to get things line up. We're hoping

that our Hem/onc will agree to let us do SubQ at home. I have emailed him and

our ped. (So please PRAY that he agrees!) continues to have post-infusion

headaches really bad, so this would be helpful for him. Of course b/c of no

vein access this is a huge plus. Did any of you have doctors that needed

convincing when it came to trying SubQ IG therapy? What did you say to convince

them? Most of the patients we meet get their IVIG orders from the

immunologist...and most have now gone to home IVIG or SubQ....so we don't see

many around. NuFactor said they would call me Monday to let me know how things

are going--they seemed optimistic that we could get everything in place by their

Feb 1 infusion. SubQ would really improve the quality of our lives, too.....

just thinking of all the pluses ...aye yi yi...makes me want to have started it

yesterday! Can anyone think of ANY cons that the hem might have for us not

going to SubQ at home? I ask because I need a Devil's advocate to come up with

stuff so I have the answers! I want to give a GREAT big THANKS for her

help in getting us to start making plans to switch to SubQ! <applause> (Thanks

to Ursula for letting me join the list again, too)

I'm sure many of you remember " us " --hubby was laid off last August and spent 9

months without full-time work. He did contract flights to get us through.

COBRA about killed us. BUT the Lord is amazing and He answered our prayers.

Every morning to get myself through those longs months I would repeat, " God is

preparing a better place for us. " ph prayed that daddy would get a job

closer to all of the doctors he knew and loved. God is AMAZING...he landed

the perfect job in the perfect location! Instead of driving an hour and a

half to get to the hospital/doctors(even our ped) we are now 20 minutes away!

We are now all settled in our new home and things are going well. God is always

faithful! Last Christmas he had no job and no idea where we would end up and

this year Christmas was filled with joy because he had a job and we were so VERY

thankful for that and having a roof over our heads! ph has been recently

diagnosed as having dysplasia-- his long bones are flatening out causing pain in

his hips and knees. He has a lot of pain...(so does and we suspect he has

the same problem as it is common in SDS kids) We tried PT, but it caused the

pain to become worse... Uncle T is on faculty at s Hopkins and helped us

through this-- he said that PT may cause it to get worse.. anyway, not to bore

you.... I'm sure you all live the same life of daily medical issues popping

up...add a diagnosis here, place one there! Our oldest is fine..almost 12...

has been losing weight.... ~BIG sigh~ I've gone back to school recently -

it was time for me to get going and work toward my Master's. It may take a while

to get it done with two kids that have all these medical needs, but it really

does feel great to be back into school. I'll get there in the end! <smile>

Re: Molluscum- I wanted to chime in here <hope no one minds>-- there have

been quite a few SDS kids who've had this and one for sure I KNOW had it for

well over a year. His mom finally covered the molluscum with a patch so that

the child couldn't scratch them or touch them and cause them to spread and they

went away. If you check out this website, you'll see where it notes the papules

spread with scratching or touching. Of course you can only cover so many.

~sigh~ and covering them up may not work for everyone...just wanted to throw

the idea out there. I know she had to keep them covered for many many

months...but no new ones popped up in the time she kept them covered......just

an idea....I'm not a doctor or a nurse and don't play either on TV! This is a

FWIW statement...here's the link:

http://www.nlm.nih.gov/medlineplus/ency/article/000826.htm

Thanks in advance to anyone who can answer my questions. I knew you guys here

on this list would know the most about SubQ than any folks on the planet! <grin

& wink>

+JMJ+

Peace Be With You,

><>Pattie

Piedmont Triad, NC

Mom to , age 11 & healthy; age 9, Shwachman-Diamond Syndrome; and

ph age 8, Shwachman-Diamond Syndrome.

[Guest guest]

Pattie Curran wrote:

from Dale,

Pattie, when Katy wanted to switch to Sub-Q her home health company said

to let THEM take care of getting the doctors permission and education

and prescription -- so I did. They had a full sell for him and could

answer all of his questions better than I could at that point. It

apparently worked -- they had his permission within days.

Hope your transition goes well. Katy saw definite improvement in her

overall health during Sub-Q versus IVIG just because her levels didn't drop.

In His service,

Dale

[Guest guest]

In a message dated 1/8/2006 12:23:17 PM Central Standard Time,

rionfam@... writes:

> I tried covering them once when she was younger, but she had soooo many

> and they were in more visible places that she would just pull the stuff off

Becki:

You would want to ask the doc if this would be okay, but what about

" covering " them with NuSkin or a similar liquid bandage? Would that seal them up

so

they couldn't spread? Just a thought...

(mom to , age 6-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

,

Good idea! I'll check with her dr. to see if it's okay...sounds like it would

work to me though!

Becki

Re: Hello/questions/update here/Molluscum/

In a message dated 1/8/2006 12:23:17 PM Central Standard Time,

rionfam@... writes:

> I tried covering them once when she was younger, but she had soooo many

> and they were in more visible places that she would just pull the stuff off

Becki:

You would want to ask the doc if this would be okay, but what about

" covering " them with NuSkin or a similar liquid bandage? Would that seal them

up so

they couldn't spread? Just a thought...

(mom to , age 6-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, age 3!, more dairy intolerant but very

healthy!)

[Guest guest]

,

Good idea! I'll check with her dr. to see if it's okay...sounds like it would

work to me though!

Becki

Re: Hello/questions/update here/Molluscum/

In a message dated 1/8/2006 12:23:17 PM Central Standard Time,

rionfam@... writes:

> I tried covering them once when she was younger, but she had soooo many

> and they were in more visible places that she would just pull the stuff off

Becki:

You would want to ask the doc if this would be okay, but what about

" covering " them with NuSkin or a similar liquid bandage? Would that seal them

up so

they couldn't spread? Just a thought...

(mom to , age 6-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, age 3!, more dairy intolerant but very

healthy!)

[Guest guest]

In a message dated 1/9/2006 6:38:38 PM Central Standard Time,

rionfam@... writes:

> ,

> Good idea! I'll check with her dr. to see if it's okay...sounds like it

> would work to me though!

> Becki

>

Hope it works. The only drawback to the liquid bandage is it gets " dirty " --

it seems to pick up dirt or discoloration, which isn't unsafe but it's

visible.