Seeking Advice

[Guest guest]

Any suggestions?

seeking advice

Hi friends,

Someone gave me a copy of a

brochure that a group sends to daycares for

them to give to parents on vaccination " law " . It,

of course, says vaccination is the law. However,

it gives the reference GS 130a-157 as the statute

that says it's the law. GS 130a-157 is the

statute for religious exemption!!!!!!!!!!!!!!! My

question to you all is: should I point out this

error and demand that they reference the whole

statute or should I leave it in hopes that some

parent will look it up and find out their

exemption rights? My dh says most parents would

just take the word of the daycare

that the reference is correct and not bother

checking it out.

[Guest guest]

I am replying late...and I hope to God that you jumped at this. I may sound

CRAZY and my view is obviously MUCH different than some on this board. I

would darn near KILL or DIE for someone to come in and show me EXACTLY what

to do. I have done a TON of reading and the stuff that they are going to

show you seems to be the " good " stuff.

I also totally get the, " Oh My God, send me someone more qualified...there

is WAY too much riding on this to leave in in MY incapable hands "

feeling....but, I challenge you to find a therapist ANYWHERE, that cares as

much as you do, or that has even a quarter of the opportunity you do to

impact your child. YOU are your child's BEST therapist and your child's

best hope. Don't even bother doubting yourself...you DON'T HAVE TIME. You

have to do what you can, and make what you do count. You DO have other

children, and YOU ARE A LIMITED RESOURCE. ly there are more books out

there, more options than we have time to POUR ourselves over and train

ourselves in effectively. TAKE ADVANTAGE of learning the different

techniques all in one day. Learn all that you can, and do the best you can

with the information you are given. If you find that what they have showed

you this and you REALLY can't do it, address it then. BUT DO NOT TURN DOWN

THIS SERVICE...THIS IS A GREAT SERVICE,and it shows that they are willing to

WORK WITH YOU, and RESPECT YOU ENOUGH TO TEACH YOU WHAT THEY DO, and THEY

TRUST YOU TO DO IT AND DO IT WELL. The best stuff I have read (What To Do

For Your Brain Injured Child Glen Doman) swears by the parent as therapist

approach, and there are workshops in Philadelphia that you can go to if you

can travel and pay THOUSANDS of dollars to learn WHAT THEY WILL TEACH YOU IN

YOUR HOME IN A DAY! I repeat, JUMP at this...please...or give them my

address....LOL

I am in a school district where they offer two options for my daughter. She

can come to speech twice a week with three other kids that ARE verbal, or

she can go to their " special " preschool. (there is some set of initials for

this, but I have not bothered to learn them) I visited the preschool, and

it is okay. Good, even. HOWEVER, she has to be there ALL DAY...with other

non-verbal kids learning life skills that I CAN teach her at home. She MAY

get some OT if THEY think she needs it (duh, she needs it) but NO ONE ON

ONE. So, I told them to keep their " services " . She is three, and I have a

GREAT rehab center here that works with us financially. She gets

" preschool " twice a week. She gets ONE ON ONE speech therapy twice a week,

and she gets ONE ON ONE OT time twice a week. The other three days a week

she gets horseback riding therapy and lots of " play " therapy, speech, and

life skills help from me and her 3 older brothers. (Yes, I have four

children) We are seeing a TON of progress...and play therapy has been a

place of huge breakthroughs. The " hand over hand " stuff we do with climbing

and crawling...and IT DOES help brain function. I have been AMAZED.

I tell you all this to tell you that you will see results! You will be

amazed...and you will be able to tell the therapists what works when they

come back. (We keep a notebook, so we can see what things overwhelm her,

and what things stimulate speech and interaction, she has gone from under 10

words in July to almost 100 now...and she SAYS eat for food...and she can

SHOW me what she wants...you will find these things actually SAVE you time)

I hope that this helps you see it different. I don't know much about

working with the schools, but I do know a good opportunity when I hear one,

and this is an incredible opportunity, and it is NOT available everywhere.

I feel certain that you will be able to benefit from the teaching, and that

you will be free to ask questions and get more help if you need it.

I wish you the best!

Seeking advice

Howdy all,

I really need a second opinion on this one. The Early Childhood

Intervention

people had an idea. They want to come all 3 of em ECI Specialist, OT, and

ST, and stay 3 hours on the 5th, and then 3 hours on the 6th. They want

to do

some sort of hand over hand therapy forcing routine or something with him.

Forcing him to use the PECS, signs, or speech (which he doesn't do) to get

what

he wants. 3 hours of intense therapy the first day with them doing most

of it,

and then the next day they will watch me doing it, and help me where

needed.

I gotta be honest. I have a home to run, and another child. They told me

straight up they are trying to train me to be his full time therapist.

And I do

want to help, but here's the ugly part. They aren't going to come back

all

of the rest of November after these 2 days. Leaving it ALL up to me.

<nodding

head in terror> I try, but I gotta be honest here, I am not a therapist.

I

don't spend as much time as I should doing these things. I get tired of

fighting him and give in after a while. And I really... I'm worried.

I want him to get intense therapy, yes, I want him to get the things he

needs, yes. But I don't know if I am the right person to be doing this

24/7

without anyone else coming to work with him too. Does that make sense? I

have to

let her know tomorrow probably. Please send me opinions asap!

Love,

Val and KD, 2.5 yr, dx autism 8/03

[Guest guest]

I am replying late...and I hope to God that you jumped at this. I may sound

CRAZY and my view is obviously MUCH different than some on this board. I

would darn near KILL or DIE for someone to come in and show me EXACTLY what

to do. I have done a TON of reading and the stuff that they are going to

show you seems to be the " good " stuff.

I also totally get the, " Oh My God, send me someone more qualified...there

is WAY too much riding on this to leave in in MY incapable hands "

feeling....but, I challenge you to find a therapist ANYWHERE, that cares as

much as you do, or that has even a quarter of the opportunity you do to

impact your child. YOU are your child's BEST therapist and your child's

best hope. Don't even bother doubting yourself...you DON'T HAVE TIME. You

have to do what you can, and make what you do count. You DO have other

children, and YOU ARE A LIMITED RESOURCE. ly there are more books out

there, more options than we have time to POUR ourselves over and train

ourselves in effectively. TAKE ADVANTAGE of learning the different

techniques all in one day. Learn all that you can, and do the best you can

with the information you are given. If you find that what they have showed

you this and you REALLY can't do it, address it then. BUT DO NOT TURN DOWN

THIS SERVICE...THIS IS A GREAT SERVICE,and it shows that they are willing to

WORK WITH YOU, and RESPECT YOU ENOUGH TO TEACH YOU WHAT THEY DO, and THEY

TRUST YOU TO DO IT AND DO IT WELL. The best stuff I have read (What To Do

For Your Brain Injured Child Glen Doman) swears by the parent as therapist

approach, and there are workshops in Philadelphia that you can go to if you

can travel and pay THOUSANDS of dollars to learn WHAT THEY WILL TEACH YOU IN

YOUR HOME IN A DAY! I repeat, JUMP at this...please...or give them my

address....LOL

I am in a school district where they offer two options for my daughter. She

can come to speech twice a week with three other kids that ARE verbal, or

she can go to their " special " preschool. (there is some set of initials for

this, but I have not bothered to learn them) I visited the preschool, and

it is okay. Good, even. HOWEVER, she has to be there ALL DAY...with other

non-verbal kids learning life skills that I CAN teach her at home. She MAY

get some OT if THEY think she needs it (duh, she needs it) but NO ONE ON

ONE. So, I told them to keep their " services " . She is three, and I have a

GREAT rehab center here that works with us financially. She gets

" preschool " twice a week. She gets ONE ON ONE speech therapy twice a week,

and she gets ONE ON ONE OT time twice a week. The other three days a week

she gets horseback riding therapy and lots of " play " therapy, speech, and

life skills help from me and her 3 older brothers. (Yes, I have four

children) We are seeing a TON of progress...and play therapy has been a

place of huge breakthroughs. The " hand over hand " stuff we do with climbing

and crawling...and IT DOES help brain function. I have been AMAZED.

I tell you all this to tell you that you will see results! You will be

amazed...and you will be able to tell the therapists what works when they

come back. (We keep a notebook, so we can see what things overwhelm her,

and what things stimulate speech and interaction, she has gone from under 10

words in July to almost 100 now...and she SAYS eat for food...and she can

SHOW me what she wants...you will find these things actually SAVE you time)

I hope that this helps you see it different. I don't know much about

working with the schools, but I do know a good opportunity when I hear one,

and this is an incredible opportunity, and it is NOT available everywhere.

I feel certain that you will be able to benefit from the teaching, and that

you will be free to ask questions and get more help if you need it.

I wish you the best!

Seeking advice

Howdy all,

I really need a second opinion on this one. The Early Childhood

Intervention

people had an idea. They want to come all 3 of em ECI Specialist, OT, and

ST, and stay 3 hours on the 5th, and then 3 hours on the 6th. They want

to do

some sort of hand over hand therapy forcing routine or something with him.

Forcing him to use the PECS, signs, or speech (which he doesn't do) to get

what

he wants. 3 hours of intense therapy the first day with them doing most

of it,

and then the next day they will watch me doing it, and help me where

needed.

I gotta be honest. I have a home to run, and another child. They told me

straight up they are trying to train me to be his full time therapist.

And I do

want to help, but here's the ugly part. They aren't going to come back

all

of the rest of November after these 2 days. Leaving it ALL up to me.

<nodding

head in terror> I try, but I gotta be honest here, I am not a therapist.

I

don't spend as much time as I should doing these things. I get tired of

fighting him and give in after a while. And I really... I'm worried.

I want him to get intense therapy, yes, I want him to get the things he

needs, yes. But I don't know if I am the right person to be doing this

24/7

without anyone else coming to work with him too. Does that make sense? I

have to

let her know tomorrow probably. Please send me opinions asap!

Love,

Val and KD, 2.5 yr, dx autism 8/03

[Guest guest]

I am one of the many who have been operating in the shadows

of this group. I can not overstate how helpful this brave

group has been in terms of providing information, comfort

and support. I am sincerely grateful to , Dr. Furman,

and all of you.

I am a CLL patient. 48 year old woman, diagnosed almost 5

years ago and have been in watch-and-wait. White blood cell

count at 70K-from 26K at diagnosis. Seems that watch-and-

wait was in my future for awhile.

However, recently I noticed some ankle swelling. After

testing, it turns out I have a kidney condition which is

believed has been caused by my CLL. Though the kidney

function itself is normal, the diagnosis seems to be that

somehow the proteins that are being produced from my messed

up CLL cells are causing the filters of my kidneys to not

work properly (filters are causing the release of way too

much protein into my urine and not enough into my blood).

Based on two reported cases, my medical team is suggesting

that I begin treatment for my CLL now as they are concerned

that if the CLL cells are not reduced the effect will be

that I will develop kidney damage pretty quickly. Seems to

be 2 reported CLL cases that back this up.

I noticed some recent discussion about Rituximab as a

treatment being used relating to issues relating to

patient's CLL, and I was wondering if anyone has had a

comparable experience to mine. I am told that this kidney

condition is very rare, but I was also told that about CLL

and here we all are-sharing information and ideas.

Thanks in advance for any thoughts you might be able to

share.

s

[Guest guest]

Sadie,

Sorry to hear about your kidneys. It sounds like you have

" nephrotic syndrome " which can be due to the antibodies (or

more commonly the light chains) depositing in the kidneys.

While 75% of all CLL patients have hypogammaglobulinemia,

approximately 5% might have a monoclonal spike. You sound

as if you are in that group.

The good news is treatment of the CLL often reverses the

protein wasting. While rituximab is a safer treatment,

sometimes a more effective and definitive treatment is

preferable. This will enable a quicker response and

potentially better protect your kidneys. The choice of

therapy FCR, FR, etc. should also depend upon the amount of

disease that is present.

Rick Furman

[Guest guest]

My husband has also experienced kidney problems in which we

are still investigating the cause. He was diagnosed with

CLL in October 2010 and then suddenly in March 2011 he

started gaining fluid (40lbs over 2 weeks) They decided to

start him on CFR in hopes that the chemo would rectify the

kidney issues. He has had a rough go since the water did

not decrease till after 2 chemo rounds and he still suffers

from swelling especially in his feet and legs. He has

recently had a kidney biopsy in hopes that we may learn what

is happening. His creatinine levels went to 300 (and now

have come down again) and his protein was going into his

urine. We are new to this journey (and this forum) but we

seem to have many doctors puzzled as to why this is

happening. We have been seeking solutions for the swelling

for some time. Any suggestions?

Geraldine

Mod's note from : Please see Dr. Furman's message:

/message/15194

[Guest guest]

You might want to research Membranoproliferative

Glomerulonephritis (MPGN), type I

http://www.ajkd.org/article/PIIS0272638609009391/fulltext

http://www.nlm.nih.gov/medlineplus/ency/article/000475.htm

http://www.nature.com/ki/journal/v42/n1/pdf/ki1992270a.pdf

~chris

CLL CANADA

[Guest guest]

- I am so sorry that you had such a terrible reaction

to FCR. At the same time I have come to know many CLLers on

line who have had great success with FCR and have obtained

very long remissions - 8 years and more and still going

strong. CLL is such a strange disease and it seems sometimes

that there is no such thing as a typical case and therefore

it is impossible to come up with one standard treatment

until the disease process is better understood. My personal

belief is that the answer will involve a treatment that is

gene specific to each patient, but I am neither a doctor or

scientist, so ??????

Some of the new treatments in trials are much less toxic

than FCR and so far have shown some promising results.

Pat