Re: Bone necrosis in my 14 year old daughter who has DS

January 6, 2009

Hello:

Our daughter Olivia has recently been diagnosed with Osteopenia which is

a weaking of the bones as well as a result of her bone marrow

transplant. They have her on 5-10mg of oral Calcium Carbonate supplement

and a dose of oral vitamin D (Calciferol) which are twice daily and

encourage alot of milk/soy with added calcium daily.

Your doctor should prescribe this if not already to put back the calcium

needed to repair her bones.

May the Lord bless your family, seek him and you shall find answers!

Perinis, Esquire

Senior Management/Legal Analyst

Management Analysis, Incorporated

2070 Chain Bridge Road, Suite 550

Vienna VA 22182-2597

Voice (703) 506-0505, Ext 279

FAX (703) 506-1436

gperinis@...

>>> sanfordcpa@... 01/05/09 21:56 PM >>>

Hello to everyone:

My name's and I've just joined your group. I have a 14-1/2 yr/old

named Rita who was diagnosed with Leukemia (Acute Lymphocytic Leukemia -

ALL) on Jan 1st 2007. She's undergone chemotherapy for just over two

years with 1-1/2 more to go. So far so good, leukemia's in remission but

she's super-sensitive to all chemo drugs. In fact she's on a maintenance

dose 1/8 the strength of most kids her age but, thank God, her blood

counts are holding well despite the low dose.

A major problem has been bone necrosis. One of the drugs she was given,

Dexamethodone (I may have mis-spelled the word) caused a necrosis of

several bones in her arms and legs, but particularly a bone in her right

ankle - so she now hobbles around. Necrosis is a fancy medical term for

" eats away, " the drug literally ate away parts of the bone (inside where

x-rays can't see very well) in her lower leg which weakened the area and

caused a partial collapse of the bone structure. She has a walker with

wheels which she has used for about a year but for the last two weeks

has refused it, for which I applaud her.

Doctors say the more she exercises the better for her leg and I fully

agree - apparently the stress (and unfortunately pain as well) causes

her body to react which in turn will eventually strengthen that area of

bone in her leg. Also inactivity has the nasty side effect of enabling

blood clots to form in the leg artery (she's had one of those and, thank

God, it has since fully cleared up.) The doctors do have treatments for

weakened bones which is a kind of cocktail that force-feeds calcium into

the bones. However, it is usually reserved for women in their sixties,

reason being that although it can strengthen the bone by " fattening it

up " it also makes it more brittle - which is fine for relatively

inactive older folk but not good if you are an active child - hence the

hesitation to administer it to Rita.

Rita's head oncologist told me today he has experience with one prior DS

girl and he realizes they are different (he told me he's had a harder

time figuring out Rita's needs than with his non-DS patients.) So I

wanted to see if there's a parent of a DS child who may have gone

through a similar experience that may be able to offer us some advice or

an MD who has more experience with DS children with ALL. Or perhaps

there are alternative medicines or therapies I could administer that

could relieve the pain (she takes Tylenol with Codeine every day) and/or

possibly repair the damage to her bones.

I realize I'm possibly grasping at straws, maybe there's nothing we can

do, but I also know that if you seek you often find.

Best regards,

and Eileen S.

January 6, 2009

Dear I am terribly sorry to hear about how hard all this has been on your daughter. Here's my best go at what you might do.We are lucky to live in the Bay Area and so have three top Children's Hospitals nearby where our son Zach is being treated (18 mos, AML) and where we can get second opinions. Stanford's Lucille Packard Hospital, for instance, has world-class oncologists as well as a DS research center and clinic. You didn't mention where you live, but I would try to do what you can to get more doctors with more expertise in *both* ALL and DS involved. For example, I would ask whether your doctors can consult the researchers who did the study upon which your child's protocol is based. You also might talk with some of those cancer advocacy groups that were recently posted on this list as well as DS groups such as NDSC to ask for direction and advice about how to best advocate for your child. (I'll repost the list: these groups often offer a lot more than financial assistance alone.)I know our local parent advocacy groups have been an enormous help to us. I wish you and your family all the very best. Please let this group know how your daughter fares.Best wishes,https://www.caringbridge.org/visit/zacharyleonwallace· American Cancer Societyo Offers transportation assistance, 800 ACS-2345, www.cancer.org· Leukemia & Lymphoma Societyo Offers financial assistance, 800-742-6595, www.leukemia.org· Childhood leukemia Foundationo Offers financial assistance, 888 CLF-7109, www.clf4kids.com· The National Children's Cancer Society offers financial assistance, 800 532-6459, www.children-cancer.com sonAssociate Professor of English and Graduate Literature CoordinatorSan Francisco State University, Humanities 5371600 Holloway AvenueSan Francisco, CA 94132(415) 338-3107 On Jan 5, 2009, at 6:55 PM, chris sanford wrote:Hello to everyone:My name's and I've just joined your group. I have a 14-1/2 yr/old named Rita who was diagnosed with Leukemia (Acute Lymphocytic Leukemia - ALL) on Jan 1st 2007. She's undergone chemotherapy for just over two years with 1-1/2 more to go. So far so good, leukemia's in remission but she's super-sensitive to all chemo drugs. In fact she's on a maintenance dose 1/8 the strength of most kids her age but, thank God, her blood counts are holding well despite the low dose.A major problem has been bone necrosis. One of the drugs she was given, Dexamethodone (I may have mis-spelled the word) caused a necrosis of several bones in her arms and legs, but particularly a bone in her right ankle - so she now hobbles around. Necrosis is a fancy medical term for "eats away," the drug literally ate away parts of the bone (inside where x-rays can't see very well) in her lower leg which weakened the area and caused a partial collapse of the bone structure. She has a walker with wheels which she has used for about a year but for the last two weeks has refused it, for which I applaud her. Doctors say the more she exercises the better for her leg and I fully agree - apparently the stress (and unfortunately pain as well) causes her body to react which in turn will eventually strengthen that area of bone in her leg. Also inactivity has the nasty side effect of enabling blood clots to form in the leg artery (she's had one of those and, thank God, it has since fully cleared up.) The doctors do have treatments for weakened bones which is a kind of cocktail that force-feeds calcium into the bones. However, it is usually reserved for women in their sixties, reason being that although it can strengthen the bone by "fattening it up" it also makes it more brittle - which is fine for relatively inactive older folk but not good if you are an active child - hence the hesitation to administer it to Rita.Rita's head oncologist told me today he has experience with one prior DS girl and he realizes they are different (he told me he's had a harder time figuring out Rita's needs than with his non-DS patients.) So I wanted to see if there's a parent of a DS child who may have gone through a similar experience that may be able to offer us some advice or an MD who has more experience with DS children with ALL. Or perhaps there are alternative medicines or therapies I could administer that could relieve the pain (she takes Tylenol with Codeine every day) and/or possibly repair the damage to her bones.I realize I'm possibly grasping at straws, maybe there's nothing we can do, but I also know that if you seek you often find.Best regards,and Eileen S.

January 7, 2009

I think 's advice is great. If you are not already working with a research institution, I would seek one out. You have a whole team of doctors that typically review cases together and you can more expertise input on the issues. Further, they are so well networked that they can call other colleagues to get advise. Hello to everyone:My name's and I've just joined your group. I have a 14-1/2

yr/old named Rita who was diagnosed with Leukemia (Acute Lymphocytic Leukemia - ALL) on Jan 1st 2007. She's undergone chemotherapy for just over two years with 1-1/2 more to go. So far so good, leukemia's in remission but she's super-sensitive to all chemo drugs. In fact she's on a maintenance dose 1/8 the strength of most kids her age but, thank God, her blood counts are holding well despite the low dose.A major problem has been bone necrosis. One of the drugs she was given, Dexamethodone (I may have mis-spelled the word) caused a necrosis of several bones in her arms and legs, but particularly a bone in her right ankle - so she now hobbles around. Necrosis is a fancy medical term for "eats away," the drug literally ate away parts of the bone (inside where x-rays can't see very well) in her lower leg which weakened the area and caused a partial collapse of the bone structure. She has a walker with wheels which she has used for about a year but

for the last two weeks has refused it, for which I applaud her. Doctors say the more she exercises the better for her leg and I fully agree - apparently the stress (and unfortunately pain as well) causes her body to react which in turn will eventually strengthen that area of bone in her leg. Also inactivity has the nasty side effect of enabling blood clots to form in the leg artery (she's had one of those and, thank God, it has since fully cleared up.) The doctors do have treatments for weakened bones which is a kind of cocktail that force-feeds calcium into the bones. However, it is usually reserved for women in their sixties, reason being that although it can strengthen the bone by "fattening it up" it also makes it more brittle - which is fine for relatively inactive older folk but not good if you are an active child - hence the hesitation to administer it to Rita.Rita's head oncologist

told me today he has experience with one prior DS girl and he realizes they are different (he told me he's had a harder time figuring out Rita's needs than with his non-DS patients.) So I wanted to see if there's a parent of a DS child who may have gone through a similar experience that may be able to offer us some advice or an MD who has more experience with DS children with ALL. Or perhaps there are alternative medicines or therapies I could administer that could relieve the pain (she takes Tylenol with Codeine every day) and/or possibly repair the damage to her bones.I realize I'm possibly grasping at straws, maybe there's nothing we can do, but I also know that if you seek you often find.Best regards,and Eileen S.

January 7, 2009

Hi, :How kind of you to reply with this info. We live on the N. shore of eastern Long Island, NY. Rita is a patient at Stony Brook, our local State university research hospital. NYC has one of the best (Sloan Kettering) but too far from us to be practical - well, we'll see.I'll definitely look into the Lucille Packard Hospital DS research center - thanks for that tip and I'll check out the references, too. Thank you so much and we wish your little Zach all the best - so young to have such a tough battle to fight.Warm regards, & Eileen S.Hello to everyone:My name's and I've just joined your group. I have a 14-1/2

yr/old named Rita who was diagnosed with Leukemia (Acute Lymphocytic Leukemia - ALL) on Jan 1st 2007. She's undergone chemotherapy for just over two years with 1-1/2 more to go. So far so good, leukemia's in remission but she's super-sensitive to all chemo drugs. In fact she's on a maintenance dose 1/8 the strength of most kids her age but, thank God, her blood counts are holding well despite the low dose.A major problem has been bone necrosis. One of the drugs she was given, Dexamethodone (I may have mis-spelled the word) caused a necrosis of several bones in her arms and legs, but particularly a bone in her right ankle - so she now hobbles around. Necrosis is a fancy medical term for "eats away," the drug literally ate away parts of the bone (inside where x-rays can't see very well) in her lower leg which weakened the area and caused a partial collapse of the bone structure. She has a walker with wheels which she has used for about a year but

for the last two weeks has refused it, for which I applaud her. Doctors say the more she exercises the better for her leg and I fully agree - apparently the stress (and unfortunately pain as well) causes her body to react which in turn will eventually strengthen that area of bone in her leg. Also inactivity has the nasty side effect of enabling blood clots to form in the leg artery (she's had one of those and, thank God, it has since fully cleared up.) The doctors do have treatments for weakened bones which is a kind of cocktail that force-feeds calcium into the bones. However, it is usually reserved for women in their sixties, reason being that although it can strengthen the bone by "fattening it up" it also makes it more brittle - which is fine for relatively inactive older folk but not good if you are an active child - hence the hesitation to administer it to Rita.Rita's head oncologist

told me today he has experience with one prior DS girl and he realizes they are different (he told me he's had a harder time figuring out Rita's needs than with his non-DS patients.) So I wanted to see if there's a parent of a DS child who may have gone through a similar experience that may be able to offer us some advice or an MD who has more experience with DS children with ALL. Or perhaps there are alternative medicines or therapies I could administer that could relieve the pain (she takes Tylenol with Codeine every day) and/or possibly repair the damage to her bones.I realize I'm possibly grasping at straws, maybe there's nothing we can do, but I also know that if you seek you often find.Best regards,and Eileen S.

January 7, 2009

thanks, brother?I'll definitely ask her doctors about these supplements next Monday. Milk is one of the few things she enjoys drinking (unfortunately she has a super textile sensitive palate.)Our best wishes for Olivia's quick healing. Your last piece of advice was the best - I shall do just that...Be blessed, & Eileen S.From: Perinis <gperinis@...>Subject: Re: [ ] Bone necrosis in my 14 year old daughter who has DS Date: Tuesday, January 6, 2009, 8:19 AM