Re: how many of your kids/RSS articles/insurance vent

[Guest guest]

Hi Jen,

Wow, you HAVE been busy. I don't know how you lug all those kids

around to two appoinmtents a day! But, it sounds like they ARE good

for you. You lucked out there! )

Now, as far as the uniparental disomy (isn't that the medical term?)

goes, it only shows up in 10% of the kids with RSS. I think they are

still researching further genetic possibilities, but nothing really

known yet as far as genteics goes. , on the other hand, has

had every chromosome test imaginable, and I am sure most of our kids

have, and they have all been.......NORMAL!!!!

Like you, I was told the same thing when I was pregnant with .

They were almost certain he had Trisomy 18! And, I was even induced

at 34 weeks because the doctor was so confident in this that he as

afraid wouldn't make it out of the womb alive, or that the

birthing process would be way too much on him if we waited until I

went in to labor on my own. My choice was, have the baby NOW and he

be alive, or wait and risk the possibility that he would be still

born! What kind of choice was that?? Anyway, my point is, we went

in this thinking wasn't going to live long either. I wanted

my time with my baby.....alive! So, we chose to be induced.

As far as the MAGIC articles, you can call MAGIC and request a log or

list of all the articles they have on file for RSS. Then once you

have that, you can order all you want, free of charge. Call them at

1-800-3MAGIC3. They have so many good articles.

I am glad to hear that Xavier is really growing and gaining now.

Those tubes make a difference. I feel terrible about the insurance

situation. I thought mine was bad! But, I will let someone else

that has battled this before talk to you about that.

It is so cool that he is sitting up on his own for a few minutes!

was about 17 months old when he did this. It is so exciting.

I have to say though, is still comfortablly in size 1 diapers,

so I don't see that transition anytime soon, but I rememeber when he

moved up to the newborn form preemies. That was such a big deal in

this house! LOL And then from newborn to size 1's.....another

special moment. I still have one of his preemie diapers in his baby

book. )

I hope some of this helped you. I have just been reading posts

lately, not posting anything myslelf. has been battling this

virus, whatever it is and that has kept me busy. Just trying to keep

him out of the hospital, so I am putting all my time and efforts into

him right now. But, I wanted to respond to you. I would love you to

email me privately if you have time. rollison @core.com

Take care,

Jodi R.

's mommmy

21 months old, 15 lbs. 10 oz., 27 1/4 "

> Hello everyone!

> I've been so busy lately and I haven't posted much. Xavier is

averaging

> at least 2 apts. a day and I have been dragging all three kids

around town with

> me to all of these! Thank god they are all so good natured, I

really can't

> complain about them at all, even though we are on the go and

waiting around for

> various Drs. from 9 in the morning until 5 or so at night. And

they are only

> 5 and 4! Now the drs. on the other hand..they all seem to think

they are our

> only apt. that day and don't seem to think that a 45 minute wait

past our

> apt. time is going to screw up our day at all. Grrrrr..... On a

positive note,

> Xavier has gained a pound and a quarter since he was discharged

from the

> hospital on the 19th of Feb. This is a miracle for him, as he would

previously not

> gain, or flat out lose for pretty much his whole life. He had only

gained 5lbs

> since he was born, and has only grown 6 inches. And he's 16 months

old! But,

> he is gaining weight, and I have seen a definite improvement in his

energy

> level..his eczema has even cleared up, and (drum roll please) he is

sitting up

> without support for a few minutes at a time! This is a kid who 3

weeks ago was

> not able to do anything but lay on the floor and chew on rattles!

And, I

> know that you guys will understand my excitement on this...I think

he is ready to

> switch up to size 2 diapers! He really could have still been in

newborn

> diapers all this time, (we had the tabs from the size one almost

overlapping to

> keep them on his skinny little butt!) but you can only buy those

little packs of

> them...and it was SO expensive to do that, so we went with the

jumbo size 1

> packs all this time. But, I think it's almost time and I am

grinning from ear

> to ear. Oh the little things I used to take for granted!

> I've had a major wake up call as far as my insurance goes. It

covers

> nothing, is the most expensive premium I have ever paid, requires

me to pay a huge

> deductible, co-pays and co-insurance, 20% of all final bills,

almost all of my

> prescription drug costs, won't cover his formula for his g-tube,

only gives me

> 30 home health visits for a calendar year, (and with 8 apts a

week, -4

> different specialists twice each a week) that is going to be used

up in 3 weeks.

> Plus, I have to pay them each $20 every time they come out. That's

$160 a week,

> plus the drs. apts that we have at $20 a pop...how are we all

supposed to do

> this? Yes, there is social security and medicaid, (if you qualify)

but how are

> you supposed to scrape together the money to foot all these

expenses until

> then?! How do you guys budget all of this? It's very frustrating

and a major

> cause of stress...all of these things that are out there to help

you take so

> long to kick in, and everyone wants their money NOW. Ugh.

> Anyway, I have been doing research on RSS and everything I can find

that has

> to do with it, and I was wondering, how many of your kids have a

genetic

> condition? I have read that RSS has been linked to a 7th

chromosome anomaly,

> (where you inherit two copies of the 7th chromosome from your

mother, instead of

> one from mom and one from dad) but for everything I read that

supports this, I

> find one that disputes it. But I'm wondering how many of our

children have a

> genetic disorder, whether it be on the 7th or not? Xavier does, he

has an

> addition and a deletion on his 18th chromosome. No one has been

able to find

> anything in the literature out there about another child who has

had this exact

> thing. (and it's hard to believe that he is the only one who has

this but that's

> what they are telling us). The RSS they say, is in addition to,

but not a

> result of, the 18th chromosome anomaly. When I was pregnant, they

told us the

> closest thing they could compare to what he had was trisomy 18,

where the child

> does not survive more than a few hours or days after birth. That

is what we

> had been prepared for when Xavier was born, although there was some

puzzling

> hope because all of the ultrasounds I had after my amnio confirmed

the problem

> showed him to be normal, no physical abnormalities, everything was

where it

> should be..he was " just small " (I hate that phrase now, it has been

used to

> describe every problem he has ever had) Then when he was born,

after all that

> lead up....we went home in 24 hours! No one had been able to pin-

point what was

> wrong, and it was just now that he has been treated for

the " failure to

> thrive " " global developmental delay " " various gastric ailments "

and " growth delay's "

> that he has. (RSS without the name?) Everyone seems bent on

getting a

> geneticist to diagnose him, but why? There is no clear link

between genetics and

> RSS. Just fitting into the range of symptoms that all of our kids

have. So

> anyway, I'm just wondering how many of our kids do have some sort

of chromosome

> abnormality. Call it a pole. Just out of curiosity.

> Also, I keep seeing you guys talk about articles on the MAGIC

website..where

> do you find them? I was looking on there today and did not see

where they

> were, but maybe I'm just tired and it's staring me right in the

face!

> Thanks for letting me blow off a LOT of steam!

> Jen

> Xavier 15months, 14lbs, 27in RSS, G-tube, Fundoplacation, 27 cal

Formula,

> Myrilax, ST, OT, PT, FT

> Emerald, 5, Non RSS

> Wyatt, 4, Non RSS

>

>

>

[Guest guest]

Insurance is definitely painful, and some policies are much better

than others. Do keep in mind that everytime your insurance says you

owe the 20% balance of a medical bill, BE PROACTIVE -- call or write

that medical person, and explain your financial situation. Many of

them will write off a portion of or all of the balance.

Re the genetics. You are discovering the painful reality -- that no

one yet knows the cause of RSS. UPD7, as you talked about, is found

in children with other growth disorders as well as RSS, and only in

10% of the cases - so it clearly is not the sole cause of RSS.

Some children have had a skin biopsy, like my daughter, which showed

a cell mosaicism, markers on 6% of her cells -- which do not show up

in blood tests (her DNA test when they looked at dad, mom and kid,

showed nothing).

Until scientists determine the gene location, none of us will know

for sure. The current hypothesis is that it is a combination of

genetics (which are causing the facial/skeletal phenotype) and

intrauterine issues (which cause the failure to grow). This would

explain why an SGA child has all of the same symptoms of an RSS

child except the facial features/asymmetry.

I have stopped reading all of the various genetic studies that keep

coming out -- our geneticist is very into RSS now and she always

keeps me abreast. It just gets too confusing reading everyone's

theories.

Re the MAGIC library articles. You can email me for the Excel list

electronically or email MAGIC at mary@... and they

can mail you a hard copy (if you don't have Excel). Read the list,

and the far right column has a description of each article. Decide

which ones you want, and then email MAGIC with the ID numbers and

your address,, and they make the copies and mail them to you.

I am still in the middle of reading the last 50 I just got on

RSS/SGA issues, all published in the last year. So it will take me

a couple more weeks to finish reading them, and then typing the info

and summaries into the Library Log.

Salem

> Hello everyone!

> I've been so busy lately and I haven't posted much. Xavier is

averaging

> at least 2 apts. a day and I have been dragging all three kids

around town with

> me to all of these! Thank god they are all so good natured, I

really can't

> complain about them at all, even though we are on the go and

waiting around for

> various Drs. from 9 in the morning until 5 or so at night. And

they are only

> 5 and 4! Now the drs. on the other hand..they all seem to think

they are our

> only apt. that day and don't seem to think that a 45 minute wait

past our

> apt. time is going to screw up our day at all. Grrrrr..... On a

positive note,

> Xavier has gained a pound and a quarter since he was discharged

from the

> hospital on the 19th of Feb. This is a miracle for him, as he

would previously not

> gain, or flat out lose for pretty much his whole life. He had

only gained 5lbs

> since he was born, and has only grown 6 inches. And he's 16

months old! But,

> he is gaining weight, and I have seen a definite improvement in

his energy

> level..his eczema has even cleared up, and (drum roll please) he

is sitting up

> without support for a few minutes at a time! This is a kid who 3

weeks ago was

> not able to do anything but lay on the floor and chew on rattles!

And, I

> know that you guys will understand my excitement on this...I think

he is ready to

> switch up to size 2 diapers! He really could have still been in

newborn

> diapers all this time, (we had the tabs from the size one almost

overlapping to

> keep them on his skinny little butt!) but you can only buy those

little packs of

> them...and it was SO expensive to do that, so we went with the

jumbo size 1

> packs all this time. But, I think it's almost time and I am

grinning from ear

> to ear. Oh the little things I used to take for granted!

> I've had a major wake up call as far as my insurance goes. It

covers

> nothing, is the most expensive premium I have ever paid, requires

me to pay a huge

> deductible, co-pays and co-insurance, 20% of all final bills,

almost all of my

> prescription drug costs, won't cover his formula for his g-tube,

only gives me

> 30 home health visits for a calendar year, (and with 8 apts a

week, -4

> different specialists twice each a week) that is going to be used

up in 3 weeks.

> Plus, I have to pay them each $20 every time they come out.

That's $160 a week,

> plus the drs. apts that we have at $20 a pop...how are we all

supposed to do

> this? Yes, there is social security and medicaid, (if you

qualify) but how are

> you supposed to scrape together the money to foot all these

expenses until

> then?! How do you guys budget all of this? It's very frustrating

and a major

> cause of stress...all of these things that are out there to help

you take so

> long to kick in, and everyone wants their money NOW. Ugh.

> Anyway, I have been doing research on RSS and everything I can

find that has

> to do with it, and I was wondering, how many of your kids have a

genetic

> condition? I have read that RSS has been linked to a 7th

chromosome anomaly,

> (where you inherit two copies of the 7th chromosome from your

mother, instead of

> one from mom and one from dad) but for everything I read that

supports this, I

> find one that disputes it. But I'm wondering how many of our

children have a

> genetic disorder, whether it be on the 7th or not? Xavier does,

he has an

> addition and a deletion on his 18th chromosome. No one has been

able to find

> anything in the literature out there about another child who has

had this exact

> thing. (and it's hard to believe that he is the only one who has

this but that's

> what they are telling us). The RSS they say, is in addition to,

but not a

> result of, the 18th chromosome anomaly. When I was pregnant, they

told us the

> closest thing they could compare to what he had was trisomy 18,

where the child

> does not survive more than a few hours or days after birth. That

is what we

> had been prepared for when Xavier was born, although there was

some puzzling

> hope because all of the ultrasounds I had after my amnio confirmed

the problem

> showed him to be normal, no physical abnormalities, everything was

where it

> should be..he was " just small " (I hate that phrase now, it has

been used to

> describe every problem he has ever had) Then when he was born,

after all that

> lead up....we went home in 24 hours! No one had been able to pin-

point what was

> wrong, and it was just now that he has been treated for

the " failure to

> thrive " " global developmental delay " " various gastric ailments "

and " growth delay's "

> that he has. (RSS without the name?) Everyone seems bent on

getting a

> geneticist to diagnose him, but why? There is no clear link

between genetics and

> RSS. Just fitting into the range of symptoms that all of our kids

have. So

> anyway, I'm just wondering how many of our kids do have some sort

of chromosome

> abnormality. Call it a pole. Just out of curiosity.

> Also, I keep seeing you guys talk about articles on the MAGIC

website..where

> do you find them? I was looking on there today and did not see

where they

> were, but maybe I'm just tired and it's staring me right in the

face!

> Thanks for letting me blow off a LOT of steam!

> Jen

> Xavier 15months, 14lbs, 27in RSS, G-tube, Fundoplacation, 27 cal

Formula,

> Myrilax, ST, OT, PT, FT

> Emerald, 5, Non RSS

> Wyatt, 4, Non RSS

>

>

>

[Guest guest]

Jen,

I know insurance/bills are horrible. You mention medicaid/social

security. Not sure if you have looked into a medicaid waiver.

Every state has them and they can help chronically ill children. In

many states, you get medicaid benefits plus additional help (ie.

respite care, nursing care). And it is not based on the parents

income. I also just learned at a meeting I recently attended that

in our state if you qualify for a medicaid waiver, they will PAY

your private insurance premiums and help cover co-pays.

Please feel free to email me privately ( ajhoward @ att.net ---- no

spaces) if you would like to discuss futher. It can be a

complicated system and one I am constantly researching and learning

more about.

Alison

> Hello everyone!

> I've been so busy lately and I haven't posted much. Xavier is

averaging

> at least 2 apts. a day and I have been dragging all three kids

around town with

> me to all of these! Thank god they are all so good natured, I

really can't

> complain about them at all, even though we are on the go and

waiting around for

> various Drs. from 9 in the morning until 5 or so at night. And

they are only

> 5 and 4! Now the drs. on the other hand..they all seem to think

they are our

> only apt. that day and don't seem to think that a 45 minute wait

past our

> apt. time is going to screw up our day at all. Grrrrr..... On a

positive note,

> Xavier has gained a pound and a quarter since he was discharged

from the

> hospital on the 19th of Feb. This is a miracle for him, as he

would previously not

> gain, or flat out lose for pretty much his whole life. He had

only gained 5lbs

> since he was born, and has only grown 6 inches. And he's 16

months old! But,

> he is gaining weight, and I have seen a definite improvement in

his energy

> level..his eczema has even cleared up, and (drum roll please) he

is sitting up

> without support for a few minutes at a time! This is a kid who 3

weeks ago was

> not able to do anything but lay on the floor and chew on rattles!

And, I

> know that you guys will understand my excitement on this...I think

he is ready to

> switch up to size 2 diapers! He really could have still been in

newborn

> diapers all this time, (we had the tabs from the size one almost

overlapping to

> keep them on his skinny little butt!) but you can only buy those

little packs of

> them...and it was SO expensive to do that, so we went with the

jumbo size 1

> packs all this time. But, I think it's almost time and I am

grinning from ear

> to ear. Oh the little things I used to take for granted!

> I've had a major wake up call as far as my insurance goes. It

covers

> nothing, is the most expensive premium I have ever paid, requires

me to pay a huge

> deductible, co-pays and co-insurance, 20% of all final bills,

almost all of my

> prescription drug costs, won't cover his formula for his g-tube,

only gives me

> 30 home health visits for a calendar year, (and with 8 apts a

week, -4

> different specialists twice each a week) that is going to be used

up in 3 weeks.

> Plus, I have to pay them each $20 every time they come out.

That's $160 a week,

> plus the drs. apts that we have at $20 a pop...how are we all

supposed to do

> this? Yes, there is social security and medicaid, (if you

qualify) but how are

> you supposed to scrape together the money to foot all these

expenses until

> then?! How do you guys budget all of this? It's very frustrating

and a major

> cause of stress...all of these things that are out there to help

you take so

> long to kick in, and everyone wants their money NOW. Ugh.

> Anyway, I have been doing research on RSS and everything I can

find that has

> to do with it, and I was wondering, how many of your kids have a

genetic

> condition? I have read that RSS has been linked to a 7th

chromosome anomaly,

> (where you inherit two copies of the 7th chromosome from your

mother, instead of

> one from mom and one from dad) but for everything I read that

supports this, I

> find one that disputes it. But I'm wondering how many of our

children have a

> genetic disorder, whether it be on the 7th or not? Xavier does,

he has an

> addition and a deletion on his 18th chromosome. No one has been

able to find

> anything in the literature out there about another child who has

had this exact

> thing. (and it's hard to believe that he is the only one who has

this but that's

> what they are telling us). The RSS they say, is in addition to,

but not a

> result of, the 18th chromosome anomaly. When I was pregnant, they

told us the

> closest thing they could compare to what he had was trisomy 18,

where the child

> does not survive more than a few hours or days after birth. That

is what we

> had been prepared for when Xavier was born, although there was

some puzzling

> hope because all of the ultrasounds I had after my amnio confirmed

the problem

> showed him to be normal, no physical abnormalities, everything was

where it

> should be..he was " just small " (I hate that phrase now, it has

been used to

> describe every problem he has ever had) Then when he was born,

after all that

> lead up....we went home in 24 hours! No one had been able to pin-

point what was

> wrong, and it was just now that he has been treated for

the " failure to

> thrive " " global developmental delay " " various gastric ailments "

and " growth delay's "

> that he has. (RSS without the name?) Everyone seems bent on

getting a

> geneticist to diagnose him, but why? There is no clear link

between genetics and

> RSS. Just fitting into the range of symptoms that all of our kids

have. So

> anyway, I'm just wondering how many of our kids do have some sort

of chromosome

> abnormality. Call it a pole. Just out of curiosity.

> Also, I keep seeing you guys talk about articles on the MAGIC

website..where

> do you find them? I was looking on there today and did not see

where they

> were, but maybe I'm just tired and it's staring me right in the

face!

> Thanks for letting me blow off a LOT of steam!

> Jen

> Xavier 15months, 14lbs, 27in RSS, G-tube, Fundoplacation, 27 cal

Formula,

> Myrilax, ST, OT, PT, FT

> Emerald, 5, Non RSS

> Wyatt, 4, Non RSS

>

>

>