Aplastic Anemia Archives

My Daughter(Aplastic Anemia)

I just found your web site and I would like to ask some questions.But first let me give you a little history on what and how we found out about her diagnoses.Three years ago my daughter came down with a cold and it seemed like forever for it to go away.When it finially did she started bruising real easily while she was outside playing and when she got cut she would bleed for a long time.(she was eight at this time)She also got nosebleeds for no reason at all,she would just be sitting there and her nose would start running blood.My husband and I got concerned and took her to the docter and was questioned because it looked like she was being beat because of all the bruises.They finially took blood tests and said that her platlet count was low and we where referred to a Specialest in Morgantown.He told us she had ITP and she would outgrow it in her teens.
Three years later while staying at my in-laws she started bruising worse....big black bruises on her legs and arms.We contacted the specialest again and he told us to take her to get a platlet count again and this time her count came back at 5000.The docter put her on prednisone for four days at a high dose.We went back and her count was still the same.And she ended up having platlet transfusion.He wanted to do a bone marrow on her to see what was going on and the marrow came back that she had aplastic anemia.
her counts continued to go down and he wanted to do transfusions only when her count went below 10,000.which we did for weeks.Her brother was checked to see if he would be a match and he came back as only half a match so we ended up two weeks later going though ATG treatments and she just recently got out of the hospital and is taking prednisone,bactrim and cyclosporin.My question is she is getting sick in the mornings after she takes the cyclosporin But not in the evenings,Why?The docter encourges her to go to school even though her immune system has been depleated,And her dad and I feel that she should be kept at home till she is better,Plus she can`t go to school when she is vomiting in the mornings.Also,he has her on Phenagren to stop the vomiting but it makes her sleepy.
how long dose it take for her to get better?She weighed 67lbs and now she weighs 60lbs(67lbs two weeks ago)She is 11years old now and to look at her you would never know that she is sick because she has so much energy.She is also at the age where she will be starting her period.And this is really worring me because if her platlets are low she won`t stop bleeding.What happens if she starts and it won`t stop?I know this is a long post but these are things that are on my mind and my little girl has suffered so much that I am searching for any and all anwsers to help her live a healthy life.
Thank You,Susan

Follow Ups:

• Re: My 8 year-old Daughter (Aplastic Anemia) Archive. Walt Stoll 07:12:49 10/19/02 (0)

In Reply to: My Daughter(Aplastic Anemia) posted by susan on October 18, 2002 at 00:44:26:

Hi, susan.

In MY opinion, your little girl is not going to get well with conventional treatment. Since you obviously have at least some faith in the doc who is not telling you all the facts, you are going to have to go to the local medical school library and have the librarian find you a simple book about aplastic anemia in 8 year-old girls. Your local public library can find you something suitable through their lending network.

Once you have enough data you will be better equiped to defend yourselves from the allopathic monopoly.

MY advice would be to read everything in the AA archives and get her to a Clinical Ecologist ASAP (eliminating her causes as much as possible) while maintaining her current "therapy".

In the meantime a perfect whole foods diet (along with a good whole foods supplement)[supplement archives] will get her started {her defense}. She is a perfect age for a healing skill now being used everywhere. Get a copy of Deborah Rozman's "Meditating with Children" (also at your library) and help her (SR on home page).

You will have to keep copies of ALL her medical records at home so get started collecting them! When you go for your consult be sure to have them all right in your hand. Do not trust anyone else to get them there for your first appointment. The doc can copy whatever he needs but you always keep all of your originals.

See the glossary for any unfamiliar terms and then the archives until you begin to understand the current understanding of the cause of AA in nearly everyone.

Let us know what you learn and how she does.

Walt