Jon, Do you want to control your blood pressure without medication? I am sure there are holistic ways to do do so, but I am can't help in that area. Do you have chronic high blood pressure? You can try meditation, and watch your diet. Don't work too hard either. About the seisures, I didn't know you can stop one from coming on. Sorry I couldn't help you more. Sheila
Does anybody here get chronic transfusions? [INLINE] Just wondering. I know most people with SC do but not everybody does. It's different for everybody. And another thing, what do you thing would happen if all of the sudden we were cured of scd? Do you think people would treat us differently or just be all like, " you're cured now lets all just forget about it and move on and pretend like you never had it at all." I notice when I tell people that I have sickle cell, they get scared, nervous, whatever you wanna call it, but they treat me differently; like they have to be careful of what they do or say because as you all know, you could be fine and the next thing you know your in excruciating pain. That's how it is for me sometimes. But most of the time I get warnings if I'm going to have a pain crisis, and then I can usually prevent it.
Anyway's that's it! Hope everybody is feeling well and is doing ok! Happy new years everyone!!! [INLINE]
lots of love,
brianna capers
Do we have any members who know about blood pressure control?
I was having problems with my breathing and heart rate at night. My grandmother, who works on her Diabedes, told me to eat something salty. It worked pretty good. The trick is remembering this all the time.
But about working hard and getting sick.
I shoveled a lot today. I've been boycotting this particular chore. I've tried many times to control my blood pressure while shoveling without luck.
Today, when my pressure was high I stopped for a long time. I kept doing that. After a while my body seemed to get into a better rythm and I would just get tired without the massive heart rate. I took my time but did a lot of work. I escaped siezure this time.
Is there a way to train myself how to do this on command?
I'm sure it would be useful in avoiding crisis under these kinds of stresses too. I don't know that much about cardio yet.
"Human Kind's greatest achievement is Dreaming the Impossible Dream and taking positive action to make that dream become a reality."
=Jonathan J. McClam Jr.=
USE YOUR IMAGINATION!
It is not a mere child's play thing...
It is your God Given Gift!
Betty Thank you so much for the compliments. The boys are growing fast. We are amazingly close. I really don't want them to grow up but we all know that is inevitable. I love them so much. Betty, Juanita, and a few others in this group knew me way before I had my boys. I was so worried about getting pregnant. Then worried all through my pregnancy with my first boy. Then went on to get pregnant again. We were not expecting to have them so close. I am happy we did. They can grow up together and always have each other to count on. Sometimes I don't feel like I have a moment to myself, but it's all worth it. It is amazing to see their personalities emerge and notice how different they are. Our older boy (Johny) is JUST like his dad. Stubborn, sweet, smart, inqusitive, loves food and video games, good at math and directions. Likes to look at maps and is interested in where all the states are. Now he starting to look at the globe. He points at a place and asks what country
it is. He's amazing. Our younger one (Erek) is so much like me. He has attitude, he's smart, sassy and a go-getter. He really holds his own. He has such a caring heart. He tells me he loves me at least 100 times a day. (No exagerration) He loves to help others and cares when someone has a boo-boo. I really think he is going to be in the healthcare field when he grows up. I can go on-and-on. They are our pride and joys. I better stop now before I do actually keep going. Anyway, thank you everyone who offers me support and advice when I need it. The decisions I make about my health affects my whole family. You are all improtant to this group. Betty, it was great that you got this all going and it's still going. Merry Christmas to you too!!!Take care. Much Love, Sheila
Sheila the boys have really grown. My how time flies. It seems like only yesterday and you were pregnant with them.
You have a beautiful family. Those boys are going to grow up and take care of their Mommy. [INLINE] Have a merry and pain free Christmas.
Betty
It's like watching one of those animations of people growing up one shot at a time. Yet mommy seems to some how stay the same age in all of them.
Have a happy Holliday
Sheila the boys have really grown. My how time flies. It seems like only yesterday and you were pregnant with them.
You have a beautiful family. Those boys are going to grow up and take care of their Mommy. [INLINE]
Have a merry and pain free Christmas.
Betty
The Kids can't wait for this day
Webfetti.com
We're just Four Nights away
From Santa on his slay
Webfetti.com
"Ho Ho Ho" ing away!
Webfetti.com
Bringing Presents for the Big Day,
Webfetti.com
*The U.S. Senate passed S. 1858, the Dodd-Hatch "Newborn Screening Saves
Lives Act."*
This bill includes provisions that, for the first time, require annual
funding for CDC's newborn screening quality assurance program and that
direct the Secretary of HHS to produce a contingency plan for newborn
screening operations -- both of which were recommended by APHL. APHL is
deeply appreciative of the work of Senators Christopher Dodd (D-CT) and
Orrin Hatch (R-UT)in advancing this important legislation, and we look
forward to working closely with Congresswoman Lucille Roybal-Allard
(D-CA) and Congressman Mike Simpson (R-ID) as they move their companion
legislation, H.R. 1634, through the House of Representatives.
Senators Chris Dodd (D-CT) and Orrin Hatch (R-UT) applauded unanimous
Senate passage of their legislation that will educate parents and health
care providers about newborn health screening, improve follow-up care
for infants with an illness detected through newborn screening, and help
states expand and improve their newborn screening programs.
âInvesting in the health of our children is an investment in the future
of our country. Today, I am proud to say the Senate passed legislation
to protect the health of our most vulnerable citizens â infants - by
passing the Newborn Screening Saves Lives Act,â said Dodd. âIncredible
advances in medical technology have equipped us to better screen and
treat infants for congenital, genetic and metabolic disorders that, if
left untreated, could lead to severe disability or death. However, while
some newborn screening occurs in every state, fewer than half, including
Connecticut, actually test for the full recommended panel of 29
disorders. The bill that passed today will provide resources for states
to expand their newborn screening programs. I thank my colleague Senator
Hatch for joining me in sponsoring this initiative, and I thank the rest
of my colleagues in the Senate for passing a measure that will help
ensure that every newborn child has the best possible opportunity to
live a long, healthy and happy life.â
âStates will greatly benefit from federal guidance and incentives to
improve their newborn screening programs, and this bill authorizes a
modest amount of funding to help states expand and improve their
programs, provide much needed educational materials to families and
improve follow-up care and treatment of newborns that screen positive
for a treatable condition,â Hatch said. âIt also helps to ensure the
quality of laboratories involved in newborn screening, so that tests are
as accurate as possible and infants receive appropriate care; and calls
for a national contingency plan for newborn screening for use in the
event of a public health emergency. I greatly appreciate my friend from
Connecticut, Senator Dodd, for his leadership in helping children.â
An estimated 4,000 babies are identified and treated each year for
conditions that could threaten their lives or health, often preventing
death and long-term disability. Unfortunately, parents are often unaware
that while nearly all babies born in the U.S. undergo some newborn
screening, the number and quality of tests vary from state to state. As
a result, a child with a given disorder will most likely receive
successful diagnosis and treatment if born in a state that tests for
that disorder, but may suffer irreversible injury or death if born in
another state that does not require such testing. Dodd and Hatchâs bill
will provide grants and incentives to states to help implement screening
of the full panel of disorders recommended by the Advisory Committee on
Heritable Disorders in Newborns and Children.
Senator Dodd has introduced this legislation in each Congress beginning
in 2002, and convened a hearing on the bill in June 2002 before the
Senateâs Subcommittee on Children and Families. Senator Hatch joined him
as the lead cosponsor this year. âThe Newborn Screening Saves Lives Actâ
is endorsed by the March of Dimes and the Association of Public Health
Laboratories, among other organizations. To see the Bill
http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=110_cong_bills&docid=f:s1858es.txt.pdf
<http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=110_cong_bills&docid=f:s1858es.txt.pdf
In a message dated 12/19/2007 8:20:19 P.M. Pacific Standard Time, sunshinegal7874@... writes:
This was cool Juanita. I am going to pass this one on. I find it interesting about the foot massages. Now if I could only get hubby to rub my feet. :D Also interesting, is the amout of people who have O- type blood. I am O- and I can't tell you how many times I had to wait for blood when I was a child. Thanks for sharing this. Very informative. Love, Sheila
Sheila one of my Best Friends is a Reiki Master and can do Reflexology I just love all of this stuff ! Love Juanita
Oh, WoW! Go Juanita! Thanks!!!
Jon
"Human Kind's greatest achievement is Dreaming the Impossible Dream and taking positive action to make that dream become a reality."
=Jonathan J. McClam Jr.=
USE YOUR IMAGINATION!
It is not a mere child's play thing...
It is your God Given Gift!
This was cool Juanita. I am going to pass this one on. I find it interesting about the foot massages. Now if I could only get hubby to rub my feet. :D Also intersting, is the amout of people who have O- type blood. I am O- and I can't tell you how many times I had to wait for blood when I was a child. Thanks for sharing this. Very informative. Love, Sheila
Your time is limited on this matter. Try to do your best to take as much action as you can as soon as you can.
I have not spoken to anyone in Authority on this matter. These are suggestions to try to help you in your time of need.
You will need to have your deportation delayed for as long as you can. Go to the American Embassy and speak to someone there and tell them of your Health Issue. Tell them that you wish to undergo Naturalization and also ask to have your case tried in front of a court of law or medical court of law. This may be the only way to delay the deportation as the laws and enforcement have become very strict on immigration You may be granted a period of amnesty (they may used other words).
These amendments are for citizens but because you do not have the appropriate health care in your country, if you ask for political asylum until you can be naturalized, they may grant it to you temporarily based on your health condition.
These rights will be yours also at that point.
Amendment VI
In all criminal prosecutions, the accused shall enjoy the right to a speedy and public trial, by an impartial jury of the state and district wherein the crime shall have been committed, which district shall have been previously ascertained by law, and to be informed of the nature and cause of the accusation; to be confronted with the witnesses against him; to have compulsory process for obtaining witnesses in his favor, and to have the assistance of counsel for his defense.
"You have good reason to be here. Don't give up on that. Let your voice be heard but peacefully."
Amendment IX
The enumeration in the Constitution, of certain rights, shall not be construed to deny or disparage others retained by the people.
Amendment XIV
Section 1. All persons born or naturalized in the United States, and subject to the jurisdiction thereof, are citizens of the United States and of the state wherein they reside. No state shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any state deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of the laws.
"Also find a hospital and doctor to follow your case because they will be your evidence when you approach a Judge to determine your amnesty or asylum. You also need to give the conditions and current status of health care for Sickle Cell patients in your country as evidence that you need to be here. Find statistics of suffering versus living well. Survival rates, especially in young children is something that our court system is compassionate about. Be prepared for your court date. A well prepared litigant shows strong intent and is not overlooked by most judges.
Once you have a Temporary Green Card you need to get your Naturalization materials and study hard. They've raised the standards for Naturalization and made the test harder to pass."
Good Luck.
Jonathan.
"Human Kind's greatest achievement is Dreaming the Impossible Dream and taking positive action to make that dream become a reality."
=Jonathan J. McClam Jr.=
USE YOUR IMAGINATION!
It is not a mere child's play thing...
It is your God Given Gift!
Thanks Juanita, this is awesome. I'm glad that I am able to collect all the info possible and know my options. Thanks!
Dear Juanita,
Thank you for your question. This decision should definitely be discussed
with her doctor very carefully, not an e-mail decision, but this is
background information for you. The sections below are what I tell the
families of children with sickle cell when they ask about hydroxyurea.Ã
Whether hydroxyurea is right for your daughter depends on:
1) the severity of her sickle cell disease
2) whether any of her organs have suffered damage that might be worsened
by hydroxyurea -brain, kidney, liver, hip joints.
3) willing to avoid getting pregnant while on hydroxyurea - due to risk of
birth defects
4) willing to get frequent monitoring of blood counts
5) willing to accept an unknown chance ofà increased risk of cancer
6) willing to take a daily capsule even when she feels OK
7) willing to wait possibly several months for the onset of hydroxyurea
benefit - individualized dose adjustment, may take a while
We take the decision for hydroxyurea very very seriously.Ã Our current
practice is to have the child's family discuss hydroxyurea with us at
several visits spread over a couple months, then to sign this consent form
to document that we have discussed the risks & benefits of hydroxyurea,
and document their willingness to accept this treatment even though it is
not experimental trial.Ã http://www.scinfo.org/hydreaPt.htm
Hydroxyurea info written for doctors is at
http://www.scinfo.org/hydrea.htmà Ã
Sincerely,
-Lewis Hsu, MD, PhD
Emory University Pediatric Hematology-Oncology-BMT
Section about hydroxyurea for pediatric sickle cell ,Ã from my article in
drspock.comà à à 2/1/01Ã
http://www.drspock.com/article/0,1510,5073+Health+TOP-467,00.html
What is Hydroxyurea treatment for sickle cell?
As you may have already learned, hydroxyurea is the first effective
medication for treatment of sickle cell disease (the first out of several
hundred medications tested over the decades).Ã Ã It has been tested most
extensively in adults, and there had been a lot of doctors waiting to see
whether children would have similar benefit from hydroxyurea.
Pediatric studies have been completed in the past couple yearsà - some
published and others discussed in meetings but not yet in print - showing
that children have similar benefit in making their sickle cell disease
milder, perhaps even more benefit than the adults get.Ã There had been
worries that hydroxyurea would interfere with growth or development, but
that has not been found in the pediatric hydroxyurea studies.Ã Therefore,
hydroxyurea is becoming more widely accepted for use in pediatric sickle
cell patients, with many centers treating adolescents and school-aged
children.Ã Some centers are now doing studies with giving hydroxyurea to
pre-schoolers and infants with sickle cell disease.
Why doesnââ¬â¢t everybody with sickle cell get treated with hydroxyurea?
The POSSIBLE long-term side effects are: increased risk of cancer, and
increased risk of birth defects.Ã The worries about cancer are based upon
hydroxyurea treatment for people without sickle cell disease, who have
blood disorders that predispose them to leukemia, having a slightly higher
rate of leukemia.Ã The worries about birth defects are based upon rat
studies.Ã Thus far, no increased cancer rate nor birth defects have been
reported in people with sickle cell disease on hydroxyurea treatment.
Several hundred adults with sickle cell disease are on hydroxyurea in the
USA, and a registry is being set up to track long-term side effects.
Some doctors are also worried about giving hydroxyurea to infants, because
animal studies suggest that hydroxyurea may interfere with brain growth
during that period of rapid brain development.Ã No actual human problems
with brain development have yet been seen.Ã Specialists in brain
development feel that children over 3 years of age have completed most of
their brain growth and will not be as sensitive to hydroxyurea-induced
problems, but there are no studies.
The actual long-term side effects are unknown, and will not be known until
many sickle cell patients have been treated for long term.Ã Presently,
only a handful have been treated for more than 12 years (the first
studies) and most people for less than 6 years (the second wave of
studies).
Who decides which person with sickle cell gets hydroxyurea?
We generally offer hydroxyurea treatment for children whose sickle cell
disease has been particularly severe, with frequent hospitalizations for
pain or lung problems.Ã We do not offer hydroxyurea for children who have
had stroke, although studies are beginning to see whether that will be
helpful.Ã We also ask that the child come in for blood counts every 2 to 4
weeks while on hydroxyurea, in order to watch for the potential to lower
the blood counts too much, and adjust the dosage slowly and carefully over
a few months to arrive at the individualized dosage.Ã
We discuss the benefits and risks with the families at great length, in at
least 2 sessions over a few weeks, and I have found that about one-third
of the families consider the unknown long-term risks unacceptable and
decline hydroxyurea.Ã A few teenagers have started the hydroxyurea and
then quit after a few months because they thought it was too inconvenient
to take the daily hydroxyurea and come soà frequently for lab tests.à Most
of the people on hydroxyurea have felt it to be very helpful in decreasing
the severity of their sickle cell disease, even though it does not cure
them completely.
Mekeeba,
How do I find your page? There's a lot of people named Makeeba. I'm sorry but, I don't remember what you look like. I would like to join your club.
Jonathan.
"Human Kind's greatest achievement is Dreaming the Impossible Dream and taking positive action to make that dream become a reality."
=Jonathan J. McClam Jr.=
USE YOUR IMAGINATION!
It is not a mere child's play thing...
It is your God Given Gift!
I received this in an email and just wanted to share it with you . Love Juanita
for your well being
HEALTHY JUICES
mail by: alpha-Q group
Carrot + Ginger + Apple - Boost and cleanse our system.
mail by: alpha-Q group
Apple + Cucumber + Celery - Prevent cancer, reduce cholesterol, and improve stomach upset and headache.
mail by: alpha-Q group
Tomato + Carrot + Apple - Improve skin complexion and bad breath.
mail by: alpha-Q group
Bitter gourd + Apple + Milk - Avoid bad breath and reduce internal body heat.
mail by: alpha-Q group
Orange + Ginger + Cucumber - Improve Skin texture and moisture and reduce body heat.
mail by: alpha-Q group
Pineapple + Apple + Watermelon - To dispel excess salts, nourishes the bladder and kidney.
mail by: alpha-Q group
Apple + Cucumber + Kiwi - To improve skin complexion.
mail by: alpha-Q group
Pear & Banana - regulates sugar content.
mail by: alpha-Q group
Carrot + Apple + Pear + Mango - Clear body heat, counteracts toxicity, decreased blood pressure and fight oxidization .
mail by: alpha-Q group
Honeydew + Grape + Watermelon + Milk - Rich in vitamin C + Vitamin B2 that increase cell activity and strengthen body immunity.
mail by: alpha-Q group
Papaya + Pineapple + Milk - Rich in vitamin C, E, Iron. Improve skin complexion and metabolism.
mail by: alpha-Q group
Banana + Pineapple + Milk - Rich in vitamin with nutritious and prevent constipation.
Quite interesting!
Keep Walking.....
Jus to check this out......
The Organs of your body have their sensory touches at the bottom of your foot, if you massage these points you will find relief from aches and pains as you can see the heart is on the l eft foot.
http://www.fun-4-amdavadi-gujarati.com/
Typically they are shown as points and arrows to show which organ it connects to.
It is indeed correct since the nerves connected to these organs terminate here.
This is covered in great details in Acupressure studies or textbooks.
God created our body so well that he thought of even this. He made us walk so that we will always be pressing these pressure points and thus keeping these organs activated at all times.
So, keep walking...
http://gurlzgroup.blogspot.com/
http://gurlzgroup.blogspot.com/
Did You Know? REGARDS
, MANAN,
Blood type and Rh
How many people have it?
O +
40 %
O -
7 %
A +
34 %
A -
6 %
B +
8 %
B -
1 %
AB +
3 %
AB -
1 %
Does Your Blood Type Reveal Your Personality?
According to a Japanese institute that does research on blood types, there are certain personality traits that seem to match up with certain blood types. How do you rate?
TYPE O
You want to be a leader, and when you see something you want, you keep striving until you achieve your goal. You are a trend-setter, loyal, passionate, and self-confident. Your weaknesses include vanity and jealously and a tendency to be too competitive.
TYPE A
You like harmony, peace and organization. You work well with others, and are s ensitive, patient and affectionate. Among your weaknesses are stubbornness and an inability to relax.
TYPE B
You're a rugged individualist, who's straightforward and likes to do things your own way. Creative and flexible, you adapt easily to any situation. But your insistence on being independent can sometimes go too far and become a weakness.
TYPE AB
Cool and controlled, you're generally well liked and always put people at ease. You're a natural entertainer who's tactful and fair. But you're standoffish, blunt, and have difficulty making decisions.
MOST IMPORTANT INFO NOW:
REGARDS, MANIKANDAN,
You Can Receive
If Your Type Is
O-
O+
B-
B+
A-
A+
AB-
AB+
AB+
YES
YES
YES
YES
YES
YES
YES
YES
AB-
YES
YES
YES
YES
A+
YES
YES
YES
YES
A-
YES
YES
B+
YES
YES
YES
YES
B-
YES
YES
O+
YES
YES
O-
YES
KNOW ABOUT THE BENEFITS OF HAVING FRUITS AND VEGETABLES REGARDS, MANIKANDAN,
Fruit
Benefit
Benefit
Benefit
Benefit
Benefit
apples
Protects your heart
prevents constipation
Blocks diarrhea
Improves lung capacity
Cushions joints
apricots
Combats cancer
Controls blood pressure
Saves your eyesight
Shields against Alzheimer's
Slows aging process
artichokes
Aids digestion
Lowers cholesterol
Protects your heart
Stabilizes blood sugar
Guards against liver disease
avocados
Battles diabetes
Lowers cholesterol
Helps stops strokes
Controls blood pressure
Smoothes skin
bananas
Protects your heart
Quiets a cough
Strengthens bones
Controls blood pressure
Blocks diarrhea
beans
Prevents constipation
Helps hemorrhoids
Lowers cholesterol
Combats cancer
Stabilizes blood sugar
beets
Controls blood pressure
Combats cancer
Strengthens bones
Protects your heart
Aids weight loss
blueberries
Combats cancer
Protects your heart
Stabilizes blood sugar
Boosts memory
Prevents constipation
broccoli
In a message dated 12/17/2007 7:05:08 A.M. Pacific Standard Time, kerjanth@... writes:
I need some advice. I currently live in north America and i do have Sickle Cell Disease. I am about to be sent back (deported) to my country where the medication/treatment for SCD complications is not readily available. Is there anything i can do .. in fact I'm really confused now because i don't know what I'm going to do when i get back.
Now all this stress has cause my condition to worsen. I wonder if i could put up a case with immigration. Has anybody been in a similar situation or has anyone with a similar situation.? Please help!!!
I am sorry I have never been in this situation nor do I know anyone who has. Where exactly do you live ? Maybe you could talk to one of the Social Workers at the hospital about your problem at the clinic you attend. Have you formed any relationships with a church (your minister may be able to help you ) or political group ? Try not to stress yourself too much (I know easier said than done ) The best thing now is to focus on getting help. Please keep us post if any of our members have any suggestions I am sure they will post them for you . Juanita
I need some advice. I currently live in north America and i do have Sickle Cell Disease. I am about to be sent back (deported) to my country where the medication/treatment for SCD complications is not readily available. Is there anything i can do .. in fact I'm really confused now because i don't know what I'm going to do when i get back.
Now all this stress has cause my condition to worsen. I wonder if i could put up a case with immigration. Has anybody been in a similar situation or has anyone with a similar situation.? Please help!!!
Oh I almost forgot this one.
I think it's something that will help everyone.
I live in my Grandmothers House. My floor is a separate level of living space from the upstairs. It is fully equiped except with a heating system that works. I am getting the most I can from the State and Federal Social Security right now. Am I elegible for Fule Assistance at all? I don't pay any heating bills. (I know they ask to see a real bill in most assitance places. I only know they do. I don't know who does.) I only pay rent and utilities combined into one payment. But, at the end of the month I am left with nothing. I don't know what the rules are regarding this in Massachusetts and I don't know where to ask.
"Human Kind's greatest achievement is Dreaming the Impossible Dream and taking positive action to make that dream become a reality."
=Jonathan J. McClam Jr.=
USE YOUR IMAGINATION!
It is not a mere child's play thing...
It is your God Given Gift!
Celina sent this website to me and also mentoined this a little while ago to the group. I thought I would pass on. I will definately give it a try. It is cough and cold season. Love, Sheila
http://urbanlegends.about.com/od/medical/a/vicks_for_cough.htm
In a message dated 12/16/2007 8:25:33 P.M. Pacific Standard Time, sunshinegal7874@... writes:
Celina sent this website to me and also mentioned this a little while ago to the group. I thought I would pass on. I will definitely give it a try. It is cough and cold season. Love, Sheila
http://urbanlegends.about.com/do/medical/a/Vicks_for_cough.htm
Sheila thanks for passing this on . All I can say is that my parents used Vicks for me and my brother when we were little and it worked ! When we had really bad colds they would rub it on our chest and they would also have us breathe over steam with Vicks , I can recall eating a little Vicks also ! Smile ! It was also rubbed on the bottom of our feet ! Of course I did this with my kids so for us it worked ! LOL ! Love Juanita
You go Girl,
Sheila you had me laughing
Betty
That's so horrible Celina. I'm sorry. I hate that, when you it comes on all of a sudden and you don't want to go but then it starts the water works on you. Ugh...... Please slow down this month if you can. We are in for a bad winter. You too Sheila. Got another storm up here for us Tomorrow. Sigh.....What can you do when you have mouths to feed though? At least just make sure you are warm at all times. It's going to be tough this winter. The worst in a long time. We are breaking a lot of records for odd weather and record lows.
I just got out a week ago and I have felt like I could go back a few times. I am a little lucky at the moment and have a limited amount of good pain meds but I'm out of fire wood this weekend with no money left to buy more. I think worrying about being is is starting to be a bigger problem than being sick really is. But I don't know if you can relate when I say when I am cold I just shut down. I can't do anything. I stop thinking clearly. This morning I felt like I played in a professional football game as a center guard. Everything hurt for an hour before my breathing corrected after waking up. (my breathing drops when i lye down and I wake up in pain every morning. I meant to ask for help on that but never did.)
I hope you are better now Celina. It seems you keep getting sneak attacks. So unfair. I know that keeping my thoughts on what I need to do and planning out and prioritising, helps to distract me from the pain.
God be with us this winter.
Jon.
"Human Kind's greatest achievement is Dreaming the Impossible Dream and taking positive action to make that dream become a reality."
=Jonathan J. McClam Jr.=
USE YOUR IMAGINATION!
It is not a mere child's play thing...
It is your God Given Gift!
Dear Juanita,
Thank you for your question. This decision should definitely be discussed
with her doctor very carefully, not an e-mail decision, but this is
background information for you. The sections below are what I tell the
families of children with sickle cell when they ask about hydroxyurea.Ã
Whether hydroxyurea is right for your daughter depends on:
1) the severity of her sickle cell disease
2) whether any of her organs have suffered damage that might be worsened
by hydroxyurea -brain, kidney, liver, hip joints.
3) willing to avoid getting pregnant while on hydroxyurea - due to risk of
birth defects
4) willing to get frequent monitoring of blood counts
5) willing to accept an unknown chance ofà increased risk of cancer
6) willing to take a daily capsule even when she feels OK
7) willing to wait possibly several months for the onset of hydroxyurea
benefit - individualized dose adjustment, may take a while
We take the decision for hydroxyurea very very seriously.Ã Our current
practice is to have the child's family discuss hydroxyurea with us at
several visits spread over a couple months, then to sign this consent form
to document that we have discussed the risks & benefits of hydroxyurea,
and document their willingness to accept this treatment even though it is
not experimental trial.Ã http://www.scinfo.org/hydreaPt.htm
Hydroxyurea info written for doctors is at
http://www.scinfo.org/hydrea.htmà Ã
Sincerely,
-Lewis Hsu, MD, PhD
Emory University Pediatric Hematology-Oncology-BMT
Section about hydroxyurea for pediatric sickle cell ,Ã from my article in
drspock.comà à à 2/1/01Ã
http://www.drspock.com/article/0,1510,5073+Health+TOP-467,00.html
What is Hydroxyurea treatment for sickle cell?
As you may have already learned, hydroxyurea is the first effective
medication for treatment of sickle cell disease (the first out of several
hundred medications tested over the decades).Ã Ã It has been tested most
extensively in adults, and there had been a lot of doctors waiting to see
whether children would have similar benefit from hydroxyurea.
Pediatric studies have been completed in the past couple yearsà - some
published and others discussed in meetings but not yet in print - showing
that children have similar benefit in making their sickle cell disease
milder, perhaps even more benefit than the adults get.Ã There had been
worries that hydroxyurea would interfere with growth or development, but
that has not been found in the pediatric hydroxyurea studies.Ã Therefore,
hydroxyurea is becoming more widely accepted for use in pediatric sickle
cell patients, with many centers treating adolescents and school-aged
children.Ã Some centers are now doing studies with giving hydroxyurea to
pre-schoolers and infants with sickle cell disease.
Why doesnââ¬â¢t everybody with sickle cell get treated with hydroxyurea?
The POSSIBLE long-term side effects are: increased risk of cancer, and
increased risk of birth defects.Ã The worries about cancer are based upon
hydroxyurea treatment for people without sickle cell disease, who have
blood disorders that predispose them to leukemia, having a slightly higher
rate of leukemia.Ã The worries about birth defects are based upon rat
studies.Ã Thus far, no increased cancer rate nor birth defects have been
reported in people with sickle cell disease on hydroxyurea treatment.
Several hundred adults with sickle cell disease are on hydroxyurea in the
USA, and a registry is being set up to track long-term side effects.
Some doctors are also worried about giving hydroxyurea to infants, because
animal studies suggest that hydroxyurea may interfere with brain growth
during that period of rapid brain development.Ã No actual human problems
with brain development have yet been seen.Ã Specialists in brain
development feel that children over 3 years of age have completed most of
their brain growth and will not be as sensitive to hydroxyurea-induced
problems, but there are no studies.
The actual long-term side effects are unknown, and will not be known until
many sickle cell patients have been treated for long term.Ã Presently,
only a handful have been treated for more than 12 years (the first
studies) and most people for less than 6 years (the second wave of
studies).
Who decides which person with sickle cell gets hydroxyurea?
We generally offer hydroxyurea treatment for children whose sickle cell
disease has been particularly severe, with frequent hospitalizations for
pain or lung problems.Ã We do not offer hydroxyurea for children who have
had stroke, although studies are beginning to see whether that will be
helpful.Ã We also ask that the child come in for blood counts every 2 to 4
weeks while on hydroxyurea, in order to watch for the potential to lower
the blood counts too much, and adjust the dosage slowly and carefully over
a few months to arrive at the individualized dosage.Ã
We discuss the benefits and risks with the families at great length, in at
least 2 sessions over a few weeks, and I have found that about one-third
of the families consider the unknown long-term risks unacceptable and
decline hydroxyurea.Ã A few teenagers have started the hydroxyurea and
then quit after a few months because they thought it was too inconvenient
to take the daily hydroxyurea and come soà frequently for lab tests.à Most
of the people on hydroxyurea have felt it to be very helpful in decreasing
the severity of their sickle cell disease, even though it does not cure
them completely.
In a message dated 12/14/2007 11:55:11 P.M. Pacific Standard Time, sunshinegal7874@... writes:
Celina!!!! I'm going to yell at you like some members yell at me when I am being stubborn. ( You know who you are) ;)
Why didn't you go to the hospital???
[INLINE] Sheila !!!! I liked that ! Love Juanita
In a message dated 12/14/2007 11:55:17 P.M. Pacific Standard Time, sunshinegal7874@... writes:
I knew I was in trouble. 15
Celina you are very special to us please know that and when I don't see a post from you I get a sinking feeling in the pit of my stomach that something is wrong !!!! Sheila was so right Go ASAP to the ER . I honestly believe that push of fluids from an IV and strong Pain Meds via injection can work wonders rather than being at home trying to drink fluids and taking pain Meds that are in pill form and don't even touch the pain. When its bad you need something really strong , plus I feel like when you go to the ER and are able to lie down and be treated it takes some of the stress off of us that we are experiencing from home. Celina if you are anything like what you are here with us then I am sure your friends and family care very much for you . It must have been some mis -communication or they were under some kind of misunderstanding as to why they didn't try and reach you. Please don't worry about that . Right now focus on you and just rest if you are not feeling batter in
a reasonable length of time GO Back to the ER, call your DR. Feel better . Love Juanita
Celina!!!! I'm going to yell at you like some members yell at me when I am being stubborn. ( You know who you are) ;)
Why didn't you go to the hospital??? If you went in for your fluids and pain control you may have been home and feeling better quicker. I know for me it takes a while to get over crisis even when I go in for the fliuds and ETC. but it does make a difference for your body to have more oxygen and fluids. I am glad you are feeling better though. I am not sure if Lance still only works weekends, but just use the time he is home to take care of yourself. I am praying for you. I just wanted to add, don't be surprised if we are all concerned about you! You are a special person and an asset to this group. You know how I feel about you so I will spare everyone the mushy stuff. :p Take care of yourself!!! Love ya! Sheila
Hi all,
Just wanted to check in with everybody. I had a really bad crisis this time, and I've been MIA for awhile. (missing in action). Anyway, my strength is still down, so I'll be brief. (You KNOW I must be sick if I'm going to be brief!) Ha, Ha. Anyway I hope everyone is enjoying themselves this time of year, but not overdoing it. I know that's hard, but think of it this way, there will be more of you for your family to enjoy, than if you get sick, and heaven forbid have to go in the hospital. I'm just trying to rest. This one really took me for a loop. My crisis happen very quickly. I was on the computer, and all of a sudden my left leg started hurting like crazy. I took medicine, but when it didn't do ANYTHING for the pain, I knew I was in trouble. 15 min. later i went to lay down, with tears in my eyes. Usually, i moan, or whatever, but rarely do I cry, especially in front of my family. So, when I was crying, my husband knew that it was bad. I'm just now to the
point where the pain meds are taking ALL the pain away.
I will fill you in more when I feel better. Juanita, Sheila, etc. thank you for your kind words. It seems like the members here are more concerned about me, than my own friends. I got no phone calls, or anything when I missed alot of my meetings, or when my friends didn't hear from me. You guys actually DID miss me, and that means alot to me. Thank you to all my friends that I've made here.
Gotta go. I'll talk to you all soon.
Celina
TOPRICIN
I explained this Healthy OTC in post 5358
This was the one that works in about twenty seconds or less if I
remember correctly.
Jonathan.
In a message dated 12/10/2007 4:11:19 P.M. Pacific Standard Time, str8up_stud4_sheezie@... writes:
Hi.. This is Jay and Yes I used to take methadone for pain only because during the stent of my stay in the hospital I was on so much pain medication that they wanted me to ween off of it and not become addicted so therefore they put me on methadone... My experience with it was not bad at all. It really didnt cause any drowsiness or nausea for that matter.. but it did work for the pain.. I find it to be a great drug because it doesnt have the effects as any other narcotic but I suggest that she doesnt take it for that long.. I was on it for maybe about 3 or 4 months and then they put me back on Dilaudid.. but it is effective
Jay thanks so much for your input on this . I tend to move away from Methadone because I always associated it with a drug used for drug withdrawal and I saw what that did to some who had to take it so its good to hear of another side about a drug. Thanks Jay . Juanita
In a message dated 12/12/2007 1:11:47 P.M. Pacific Standard Time, sunshinegal7874@... writes:
Hi Everyone, I hope you all are doing well. I have been reading the posts. I don't really get a lot of time to write in. You all know how this time of year can be. I am so busy trying to keep up with things and still having lots of pain. The cold really doesn't help. I am trying to stay as well as possible. Plus my mother in law is back in the hospital. She should be home tomorrow. The boys are so excited about Christmas. We went driving around last night looking at the lights. They love them. We are expecting some snow tomorrow and a good storm this weekend. I am actually looking forward to not having to go anywhere if we get a lot like they are calling for. Anyway I just wanted to check in. Hope you all are not stressing about the holidays too much. Take care, Much love! Sheila
HI Sheila I know how busy everyone is this time of year so post when you can I have been away now in LV for almost a month so I am not on as much as I normally am. The cold is so hard so stay as warm as you can . I love this time of year its really all about the kids isn't it ? I love the look on their faces on Xmas day . My friends are all telling me there is a storm coming in NY and to be glad I am not at home right now LOL ! Don't stress too much and spend too much . Love Juanita
In a message dated 12/14/2007 7:52:40 A.M. Pacific Standard Time, casimiransmom@... writes:
What do we know about this? I was speaking to a parent of one of
Charity's classmates and she says that this is a great drug to be on.
Since her son has taken it he hasn't had any episodes and it's
increased his blood count tremendously. Does anyone have any
experience with this. Charity is still on penicillin, but will go off
of it next year when she turns five. I'm exploring my options when she
no longer is on penicillin. Thanks!
Rachael :-)
HI Rachael, I know of quite a few people who have taken this drug and have had a big change in the quality of their life . Very few if any crisis! The people that I do know of are adults but that doesn't mean that children cant take it . I think and this is just my thinking that using Hydroxyurea is a very personal decision one you have to weigh . My daughter did not take this drug she was made aware of it (she is an adult) but decided that her crisis were not that frequent or severe and she didn't want to take it . Her choice . I am not saying by any means that her crisis were not without admissions and many visits to the ER but there are some people who have it worse than others although we always tend to think our children have it the worse I guess because they belong to us and we love them so much ! Smile ! The penicillin protocol is a very good one because when we are so young and our immune system is so vulnerable we are subject to many infections and pneumonia is
very common with people with SCD. Unfortunately, My daughter has had pneumonia many, many times . If you like I will be very glad to send you a letter I received from one of the Dr's I trust in the SC Community , I had asked him about this drug when my daughter was thinking of taking it and he gave me his thoughts with pros and cons and he speaks of it in reference to children taking it . If you like I will be glad to send it to you through the group. I am glad to see you are asking questions and trying to get as much information as you can about it before giving it to Charity. Take care Juanita
Hydroxy Urea is the next step in the fight to aid people with blood disorders and weak immune systems. I've heard stories like the one that you've heard from a lot of people in this group and in other hospitals. It was first promoted as a miracle Cancer drug. It was quickly recommended for treatment of Sickle Cell and other diseases.
How people react to treatments change as they get older. I have never had a Cold or Flue while I've been on this medication. As for my episodes, I cannot pin point why I still have these besides the cold weather. But I am 31. When people are young is the time to introduce Healing treatments and vaccines. You may possibly have great results with the treatment.
FYI
Penecilin and Hydroxy Urea are from two different categories of medication with two different purposes. Penecilin builds Immunity to bacterias. Hydroxy Urea reinforces the blood supply in the body, by creating new undamaged FETAL HEMOGLOBIN. The more healthy blood cells, the Oxygen there is, the better your own immune system will support itself. Your son, depending on what your doctor thinks, may very well be able to be on both at the same time. But one probably shouldn't be looked at to replace the other.
Jonathan.
"Human Kind's greatest achievement is Dreaming the Impossible Dream and taking positive action to make that dream become a reality."
=Jonathan J. McClam Jr.=
USE YOUR IMAGINATION!
It is not a mere child's play thing...
It is your God Given Gift!
What do we know about this? I was speaking to a parent of one of
Charity's classmates and she says that this is a great drug to be on.
Since her son has taken it he hasn't had any episodes and it's
increased his blood count tremendously. Does anyone have any
experience with this. Charity is still on penicillan, but will go off
of it next year when she turns five. I'm exploring my options when she
no longer is on penicillan. Thanks!
Rachael :-)
In a message dated 12/12/2007 4:34:37 P.M. Pacific Standard Time, bcapers72@... writes:
[INLINE] hi everyone... I dont fell so great right now... I have some sort of stomach virus with diareah, stomache pain, cough, sore throat, weakness, and the list goes on and on... so yea... anyways just saying hi!
lots of... whatever... [INLINE]
bria... oh, u guys no who i am...
[INLINE]
Hi Bria sure we know who you are ! [INLINE] Sorry you are not feeling well hope you are taking something for your stomach virus . You know all of the cold,cough remedies to try Try to rest as much as you can and eat very light, toast, broth, drink Herbal tea, chamomile would be good to help soothe your stomach . Are you gargling to help your throat ? You can also try honey and lemon or , zinc lozenges are very soothing for the throat or Ricolla ( I think I spelled that wrong Smile ) cough drops . If you start to run a fever check in with your Dr lots of flu going around this time of year. Feel better. I know you know the tried and true remedies already if you need suggestions let us know we wi