very severe aplastic anemia support

[theprodigy001]

hello,

my 2 year old daughter was diagnosed with vs aplastic anemia..she don't have a direct BM donor so they decided to treat her with atg and and cyclosporine.she starts treatment Thursday and i am very scared. what is the treatment like? long term life and so on.
i read online what docs say and other sites i want to know peoples personal experiences.

thanks

[CDChilds]

Hi there. My son Gage was diagnosed with AA when he was 3 years old. He's now 12 going on 13 in September. When we first found out that he had this illness he was considered moderate. His counts were stable until he was 6 years. At the age of 6 his counts started to decline, so Dr. Bowman at Cooks Childrens Hospital in Ft. Worth, Texas decided we should try our first round of ATG horse serum. The medication is given through an IV and its one large bag. It takes about one day to receive this medication. Everything after that is managing his syptoms. They began him on steriods, cyclosporine, benadryl for any allergic reation, tylenol for pain. He did have a few symptoms ranging from body aches, fever, rash, fatigue, headaches and grouchy. His blood counts begain to drop but that was to be expected. They gave him a few blood transfusions and platelet transfusions. This is very normal.

The headaches were the worst because the medications made his blood pressure rise. At this point they put him on blood pressure medication which controled the headaches. He also lost his appetite, however they stressed that the most important thing was to keep him hydrated. So we made sure that we had plenty of his favorite drinks.

Gage handled this treatment pretty well his first time. The only thing he really complained about was the benadryl. It made him very sleepy and all he wanted to do was stay awake and play video games.

The nurses and doctors worked around the clock to make sure the he was comfortable at all times. They even had a childlife specialist that came in before the treatment to explain to Gage what was going to happen to him. This was done in such away that Gage was less affraid.

The hospital stay for ATG is usually about one week to ten days. After that you will go home and begin your own care for your child. Expect to have weekly blood draws to monitor the progress. It took Gage almost three weeks after treatment to really start seeing a change in his counts. The started to rise. However, he ramained on cyclosporine and steriods for about 6 months after treatment. Then they begin to tapper his meds down until he was not on any medication at all. His blood count became normal for a while. About 2 years and then he relapsed. However, I do know of several children that ATG has put them in complete remission. Every child is different.

My son Gage has underwent two rounds of ATG since the age of 6. He is now almost 13years old. Over the years he has come to understand his illness better now that he is older. Gage handles his illness better than I do. LOL He's happy, well adjusted little boy. Even though he has his limitations it still does not stop him from finding joy and excitement in his life.

I hope I have eased your mind a little bit. If anything, just knowing what to expect can be help a great deal. If you have any questions or just need someone to talk to please feel free to contact me anytime.

My prayers are with you,
CDChilds

[theprodigy001]

hello CDChilds

thank you for the info.it really does help alot.
how did he react to the second treatment of atg and the other meds?do they have a less chance of working the second time around? any other info would be helpful.

i am glad your son is doing good.

[CDChilds]

Before we decided to go forward with the second round of ATG we wanted to get another opinion. So we decided to contact Dr. Neil Young at NIH, National Institutes of Health in Maryland. Dr. Neil Young is one of the formost doctors in regards to Aplastic Anemia. So we made an appointment and they did bone marrow core biopsy and took lots of blood. When we spoke to Dr. Young he felt that Gage was not severe enough to go forward with a BMT and he thought it was best to try ATG again.

Based on this information we went forward with the second round of ATG at Cooks Children Hospital. Instead of using the horse serum they decided to use the rabbit serum. This took place in the summer of 2008.

With the rabbit serum Gage had a the same symptoms but they were a little more intense. Everything seemed to be a little harder the second time around. I'm not sure if this is because he was older and more aware of his illness. however, he did experience fever, severe headaches, allergic reaction to the platelets, rash on his stomach and back, a few mouth sores. But I think this time the bodyaches were a little worse. Please understand that when your daughter goes through her treatment that her blood counts will get very low. This is normal and the reason they give the blood products during their hospital stay.

The only thing I can remember that was really different was that when we came home he experienced "serum sickness". This is a delayed immune system response to the animal protiens in the ATG. The first week we came home he became very sick with bodyaches and high fever. So we went back to the hospital for an overnight stay. After antibiotics, and benadryl and pain releivers, he was able to go home the next day. Gage had to continue his steroids and cyclosprine upon going home. His meds were reduced over a period of about 6 months. However, they did decide to keep him on his medication longer the second time around. Currently his doctor is trying to wing him off the cyclosporine to see how he responds. He only takes 1.1 mil twice a day. Its a very small amount.

Gages counts have never been normal even after the ATG treatments. However, they did stablize for about 2 1/2 years each time and he has been able to have a relatively normal happy life. His counts are stable but the do tend to go up and down.

My husband and I debate almost weekly if we should do the BMT. I have two other children that have been HLA typed but they do not match. We did a preliminary search for a BMT last year. They have found an unrelated. match in Europe. I was told Italy. However the man is 50 years old. We are currently on hold about the BMT at this time.

During your stay at the hospital ask as many questions as you can. Dont feel like they are unimportant and stupid questions. Even if you are repeating yourself. At the time I was in the hospital with my son I kept a journal. I wrote everything down that was done to my son. And I mean everything. My journal was my way of keeping track of what was being done and the medications that were given. I kept notes on how my son felt after each medicaton. When a nurse floundered about his medication, I could always rely on my journal to make sure everything was running smoothly.

Please contact me anytime and keep me updated on your daughters progress and recovery. I'm here for you.

CDChilds

[theprodigy001]

hello,

we where supposed to start the treatment a few days ago but she became sick. so they gave her meds and she is getting better slowly.we are shooting for Monday to start the treatment.
i am so worried.but talking to you is easing my fears a little.its nice to talk to someone who went threw this.
i have some more questions.sorry

how long after he stopped the cyclosporine the 1rst time did he relapse?
and was there a reason he did relapse, like did he get sick or exposed to something.how long has he been on the cyclosporine the second time?

[CDChilds]

Originally Posted by theprodigy001

hello,

we where supposed to start the treatment a few days ago but she became sick. so they gave her meds and she is getting better slowly.we are shooting for Monday to start the treatment.
i am so worried.but talking to you is easing my fears a little.its nice to talk to someone who went threw this.
i have some more questions.sorry

how long after he stopped the cyclosporine the 1rst time did he relapse?
and was there a reason he did relapse, like did he get sick or exposed to something.how long has he been on the cyclosporine the second time?

Gage did really well after his first ATG(H). The only remarkable thing that happened was his platelets became low the second week we came home. We had to go back for a platelet tranfusion. After that his counts steadly went up over a period of 6 months (almost normal). They started winging him off his meds into the third month of being home and he came off all meds within the first 6 months. After that they declined a little but they remained very stable for over 2 years. Then we saw a trend of ups and downs for another 6 months or so but nothing life threatening. Then another 3 months past and they begin to decline to were we became concerned again. His white counts became pretty low so they removed him from school for a short time and put him back on his meds. At this point we felt the he was comming out of remission. His counts rebounded a little but not enough to were we were happy. So then we started talking about another round of ATG for the summer of 2008.

As far as Gage getting sick. He's never sick with the exception of a cold or allergies. Before his first round of ATG he was always sick and we were always in the doctors office with respitory infections, earaches, and viruses. To this day he hardly every gets sick. It actually amazes me.

After his second round of ATG (R) in summer of 2008 his count came back up to almost normal, however he stayed on all his meds for about 6 months. With the exception of his cyclosporine. He is currently still on a very, very, small dose, .1ml twice daily.

We went to see Dr. Bowman (Hemotolgist) today for a visit and we discussed removing him off cyclosprine in the up comming weeks. Gage is only taking a very small dose .1 ml twice a day and he doubted that it really had any effect on him. When he is removed completely from the cyclosporine we will watch and see if he remains stable. If he does at that point it will just be a watch and wait period. If his counts remain stable then we will just keep doing what we are doing. If Gage's counts start to drop then Dr. Bowman thought we should consider another round of ATG(h). Gage does not have a good BMT, or stem cell match right now so this would be our course of action.

I want to tell you something that may seem a little crazy but my husband and I tried it. My other two children did not match Gage for a BMT. So we decided to see if I could get pregnant with a match. We tried 4 times with the help of IVF because my tubes were tied after he was born. This is done through IVF because its pretty technical. I went on fertility drugs and made lots of eggs. They would set a time to pull the eggs and then they would fertilize them with my husbands sperm. Then on day 4 or 5 they would pull one cell from each egg and look for Gage's HLA typing. This is done through "Pregenetics Determination" We actually had a perfect match but my body rejected the egg after it was placed back in my uterus. We tried three more times without any luck. However, at the time that we did this I was 44 years old and the chances were very slim but we still wanted to try everything possible. Some people think this is trying to make a designer baby however if I had a made a match we could have used the baby imbilical cord blood for his BMT. The sucess rate is a lot higher if you have a matched sibling. Also we were told that cord blood actually is better than stem cells from bone marrow unrelated donor because it has not fully matured and setting up house keeping in Gages marrow would have been more excepting. Less side effects, less GVHD. However, cord blood takes a little longer to ingraft to his marrow but we were told that the out come is better. My husband and I decided to only try four times. We had to put a number on it because a person can get so wrapped up in the whole IVF process. It was very emotional for me because of all the hormones they had me on. But it was a decision I'm glad that we tried.

Some people frown on the attempt that we made with the IVF. However, I always wanted a really large family and If I had become pregnant with his match, I not only would have another child to love and care for but I would also have a chance to better Gage's quality of life.

The things that mothers will do for there children...

I find that every AA case is different so what I'm telling you is our experience. Your daughter may have one round of ATG and remain in remission for the rest of her life. Its possible.

CDChilds

[theprodigy001]

hello,

can you give me some tips on what you have done to keep germs out of your house.what cleaning supplies do you use or what seem to be most effective..i have herd to disinfect with lysol once a week helps a lot. my daughter has seemed to be attached to her passafier since she is in the hospital.would her with her nuk in her mouth all the time prevent her from germs?also she is coming home soon and would like to get the house ready so any ideas or help would be great.


thanks

[Neil Cuadra]

We switched to anti-bacterial hand soap and found that just doing regular cleaning was more important than which particular cleaning product we used. Even vinegar can be a pretty good antiseptic since it inhibits bacterial growth. Washing our hands frequently was probably most important of all. You can find some tips about avoiding mold at WebMD. I suggest keeping your daughter from getting into household plants you might have in planter pots, and keeping her away from people who are sick as much as possible. I don't think it's necessary, or possible, to maintain an immaculate environment, and just trying to keep a reasonably clean and safe house is a good goal.

With a 2-year-old you have to worry more about what's on the floor and what she's putting in her mouth than about kitchen or bathroom counters. You can't achieve perfection with a toddler; germs are always going to be a part of their world and little ones just naturally get into everything! But sweeping and vacuuming will give her a cleaner environment. Some families leave their shoes off in the house since shoes tend to track in a lot of dirt.

I'm just guessing, but her pacifier might keep her from putting other things in her mouth, meaning it might actually be a benefit. Of course, she'll probably drop it on the floor now and then, pick it up, and put it back in her mouth, but that's probably still better than having her hands in her mouth all the time.