It's happening again…

[ButchL]

My step daughter Ashley has been being treated for low platelets for the past few weeks. They at first thought it was ITP. Today she had a BMB and they believe she has Aplastic anemia. We have an appt. on Monday at Roswell Park here in Buffalo with all the same doctors my wife had. Deja vu here. Her platelets today were only 2300. They don’t want to transfuse until they figure out exactly what they are dealing with. She is only 20 years old.

[Bkwits]

OH NO,what were her reds? Her plts bawere only 2300? I hope you meant 23,000. My thoughts and prayers for Ashley and for you.

Barb

[ButchL]

Not a typo… 2300 Yesterday 3500. I don’t have the numbers but wbc and rbc low as well.

[Neil]

Hi Butch,
A couple thoughts for you to think about for Mondays appointment.
Does she have any symptoms of low platelets? If not would ask the doc/lab to perform a manual count to verify the actual plt level. The equip used to measure plts is not that accurate, particularly at the low end. It takes a series of CBCs to develop a picture of the real plt world. There is only a shot glass full of platelets in ones body when they are normal. Pretty tough to measure. I ahve had this occur a couple times and the real count was what has become my normal level—about 10,000. BUT no symptoms! A very big BUT.
If she does need platelet TX make sure they use irradiated filtered platelets and if possible single donor platelets. This will help extend the interval between TX, help the effectiveness of the TX, extend the overall time TX can be given, reduce the potential for antibodies to develop and more less common issues that might develop. Would also ask for benedryl and Tylenol about 45 minutes before any TX ty reduce the possibility of a reaction. This is probably SOP at Roswell, but would make sure. Sometime an insurance co. or a doc might be inclined to cut some corners.
IF THERE ARE NO SYMPTOMS question the need for a platelet TX. I was at 32,000 when DX in 1997. Have been at 10,00o more or less since 1999. Only TX was when I went in for some surgery. A lot of docs use 10,000 as the point to transfuse. This is not always the case. There are lots of us who have a few good platelets in our bodies that are adequate to handle our needs. At the same time there are thousands of abnormal plts being produced, identified, killed and flushed. This is typical of MDS. IN AA the hypocellular marrow can account for the lower level. BUT if the quality of the existing platelets is good they can perform their job.
The fact the docs did not go into the TX mode at the 2300 level could support the above thought process. Hope it helps and leads to some understanding.
Have only had good info on the treatmet level and the quality of the docs at Roswell.
On another note– how did you come out during the October snow storm? Had relative send pictures. Had 2 sisters-in-law visiting at that time. Their kids told them to stay here till the electricity was back on. Took 10 days in one case.

[ButchL]

I’ll probably get some of the spelling/terms wrong so forgive me. She currently has a lot of petechie (red dots) bad bruising and frequent nose bleeds. They had her on prednesone for the last 3 weeks as they thought it was ITP. This week they gave her gamma globulin TX Tues-Thurs. Tues 8,000 pl, wed 5200, thurs 3500, today 2300. The docs do not want to do regular platelet tx yet as it could increase the risks if she has to go with a BMT.

Another dilema is that she has a 16 yr. old sister. She would of course probably be the best match should it go that way. The problem is, they are thinking this may be hereditary so she needs to be thoroughly looked at as well.

And as for the weather in October Neil, I was lucky. I only lost power overnight. Neighbors of my parents had so much flooding, their washer and dryer were floating in the basement! Everywhere you look here the trees are broken still. It is still a mess here and there.

[patti]

Butch,

PLEASE, PLEASE, PLEASE contact Marla Larkin. You can do a profile search on this forum for her email address (she doesn’t post here anymore). Her website is http://www.geocities.com/marlakins. She had Aplastic Anemia and healed her body naturally. It took two years and she’s been transfusion free for 5 years and all counts normal. There are a number of other folks on the AA board also using natural methods that are healing their bodies. AA is almost always environmental caused. Even IF your daughter’s is hereditary, that doesn’t mean it won’t heal with natural therapies. At least please write to Marla. She can help you so much. She’s been a HUGE help to me with my MIL’s MDS even.

Personally, I’d be very worried if they don’t want to tranfuse your daughter and she’s having those kind of low platelet symptoms. I’d say get some platelets now (before she has a stroke) and they can ask their questions later! We only transfuse mom around 4000 and that is low enough for her to experience too much bleeding. And we don’t even go by numbers so much (like Neil said) as we do symptoms.

I don’t even know what to say by way of encouragement because I can’t imagine how difficult this has got to be for you. I will pray for your family.

God Bless,

Patti

p.s. Just had one last thought….what industry are you surrounded by where you live? I ask because we had a little girl a few towns away that showed up with AA (she was 7). She had AA for over a year and they were heading towards a BMT. They sold their house and moved closer to doctors and her AA went away. They discovered it was an industry across the river that her body was so sensitive to some chemical it put out. When the wind blew just right it would blow towards their house. Since your wife had this also, is there some industry not far away that could be blowing chemical your direction that their bodies are just really sensitive to?????

[Neil]

Hi Butch,
You can pretty well ignore much of my initial message since she has symptoms.
There are treatments such as ATG and ALG that have put some into remission. There is cyclosporine used in conjuction with ATG and/or ALG.
The hereditary consideration can be valid, particularly in view of the nature of the industry in the Niagara Falls area.
Another possibility is a cord blood transplant. There has been some huge progress in this area.
After you get the opinions at Roswell validated you might ask for a referal to Dr Neal S. Young at the NIH. He has been recognized as one of the top AA specialists in the country if not the very best.
They have several programs going including stem cell harvesting. It may be worth looking at. One of the advantages of the NIH is the government picks up the cost, including transportation to and from Bethesda. They have had some good successes recently, but one must understand the potential risks. They have some impressive stats but it is necessary to know how closely the successful treatments paralled your daughters case.
You can go to http://www.nih.gov for more info.
Another excellent source is Marilyn Baker 1-800-747-2820 at the AA-MDS Intl Foundation. She can jump start the informaton process and help get you up to speed on the latest treatment options.
Another source of info is http://www.pubmed.gov It is the National Library of Medicine database. There is no fee or limit to the number of times you use the database. The articles are for general info purposes only. It would be necessary to go to Roswell to get the complete articles

[gemloyear]

Hi, Butch, I’m so sorry that you need to go through this again. I feel so bad for Ashley I hope that they figure out that it’s something less serious, and that she will have a complete recovery.My prayers are with ashley and your family.
Take care, Ellie

[Carrie]

Oh no! I’m so sorry to hear that she’s having trouble. I pray that it is nothing so serious.

If you need to talk, you still have my number.

Carrie

[ButchL]

Just got back from Roswell.

Ashley may have non-severe aplastic anemia. They are still doing more tests. Her platelets are at 11,000 today which is the highest they have been. Her RBC and WBC counts are up a little as well. She will go back for more blood work Wednesday. If the counts stay the same or higher, they will continue to monitor. They have a couple different treatments they can try depending on her counts. ATG, Cyclosporin etc. A transplant would be the last resort. It all depends on her counts.

I’ll update as we learn more but we consider this good news……

[Jack_dup1]

Butch,
I’m at a loss for words on these occasions, the initial news about your step-daughter just sucked. I am glad the follow up was betters news. Keep us posted and wishing the best.
Jack

[chuckk333]

Butch,

I urge you to take Patti’s suggestion that you contact Marla, as she seems to have been able to achieve complete submission from AA. Her member ID is uno grasshopper. You can get her email from a search for that name. I clicked on the the URL that Patti listed, but it was unsuccesful.

Marla has a Blog that describes her fight against the disease.

[patti]

Try this link without the period at the end:

http://www.geocities.com/marlakins/

patti

[ButchL]

I ran across her page back when my wife was ill. There is a lot of good info there and Ashley has started changing some of her lifestyle. Currently Ash doesn’t have internet at her house so we are going to get that set up. (She usually uses it at school). I’ll post more tonight after her doc visit today.

[ButchL]

UPDATE – Her platelets are at 7,000 this morning. She is getting platelets right now and will have another BMB at 1PM today….

[Author]

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