Thread: Idiopathic thrombocytopenic purpura

Our family are Jehovah's Witnesses. My 16 year old daughter was diagnosed with chronic ITP October 2008 after a couple of low platelet blood tests, 40 and then 38. In 2006 she had a platelet count of 86 after a virus, but it went up to 150 a couple of weeks later.She has had tests for Lupus,Aids, arthritis etc, all negative.
Since the diagnoses in Oct 2008 her platelets have gone up and down and are presently 18, a drop from 31 due to a virus she caught a few weeks ago.Apart from the platelet count ,she gets a few purple dots on her arms and legs and a slight rash now and then and occassional gum bleeding when brushing her teeth,she has had no other signs of bleeding.
My husband, daughter and I have been resisting the steriod treatment and splenectomy the specialist has been recommending since our first visit last year, believing it to be too aggressive a treatment for a count in the 30's. But with her latest drop we agreed to the steriod treatment. I must say, on my part reluctantly, as it seems to have only a 30% chance of success and may put us on the path to splenectomy whether we like it or not.
Even though I told the specialist I am sure this all started after a virus, she says my daughter has the adult form of ITP which usually does not go away by itself. I have read that adult ITP starts insidiously, but the childhood ITP after a virus ,then can become chronic and can disappear even years afterwards with no treatment.
I have read about tranexamic acid as another possible treatment.
I would appreciate any advice please.

Originally Posted by Rose

Our family are Jehovah's Witnesses. My 16 year old daughter was diagnosed with chronic ITP October 2008 ...
Since the diagnoses in Oct 2008 her platelets have gone up and down and are presently 18....
I have read about tranexamic acid as another possible treatment.
I would appreciate any advice please.

Tranexamic acid (aka Cyklokapron) is a first cousin of Amicar, which is much more widely used and available. It can help slow or stop mucosal bleeding (e.g. bloody nose). Don't use it if the urine is bloody. I do think someone with chronic ITP should have a bottle of Amicar in the house for rainy days.

But the bigger issue is getting the platelets to stay up. I share your hesitation on the steroids. I did have a teenage girl in my practice a few years ago with chronic ITP. We treated her with decadron four days per month. It worked well, but she developed a labile mood, weight gain, and yeast infection.

How is her diet? Have you measured her vitamin D level? Is she on any other meds?

Thanks for your reply.
I read another of your posts recommending vitamin D in the form cod liver oil. I recall you mentioning not to give omega 6? The cod liver oil I have has omega 6 in it as well as omega 3.Can you get it without omega 6? What else is vitamin D in in the required amount?I do not know her present levels.
Her diet is quite good, although she has bouts of ecxema from dairy and hives after showering. I make sure my family eat as many organic products as possible with a range grains ,veges and free range meats. At the time she became ill though she was low in iron, if i recall I think the count was about 16.She had been eating a vegetarian diet for about a year at that time. We immediately insisted she eat meat again and she was on iron tablets for a time.We also took her to a naturopath. She had a hair analysis test done and was found to have a number of food in tolerances and sensitivities.These foods were eliminated or rotated to reduce her immune reactions.Her platelets went up to 46 in a few weeks, but she found it very hard maintaining the strict dietry restrictions so could only do it for about three months.She does avoid foods she severley reacts to though.
The prednisone course is for 20 days in five days of 3,2,1,1/2, which began 8 days ago.She is also on a 7 day course of amoxicillin as she was at the tail end of a virus when she was started on the prednisone. No other meds.
I am very concerned about what may happen if this steriod course has no effect and very unhappy about the possibility of being scared into a splenectomy. I think these are the only choices in New Zealand.I feel as if I have time limit to come up with an alternative to get the platelets up.

Hi Rose,
My name is Melissa Loyd and I am one of Jehovah's Witnesses too.I am so sorry to hear that your sixteen years old daughter have ITP.I know how she feels about ITP because I have ITP too.In 1996 I came down with ITP and I had to stay in the Baylor Hospital at Dallas Tx for a month.The doctors gave about 350 mg of pred through the IV's and the Iron through the IV's too.I was in the ICU for nine days.And I had two doctors for a jerks and those two forse me to have blood transfusion and they didn't listen to me and done it any ways when I was sleeping in the ICU.But rest of my doctors and nurses were 100% behind me.The next day my mom and dad and one my elders told me when they told I got pretty mad at those two doctors but I kept my cool about it.One of my favorite doctors listen to me and I read a scripture to him and he follow with me in my bible and took the bible and read it for himself and he give bible back and he had one little tear from his eyes.I showed him Ps 37:10 and 11.And plus he is a Jewish doctor.My favorite doctors found me really good surgens that took my spleen out and they took my spleen out with no blood transfuisons at all.When one of my favorite surens had to wake me up to make sure that I am okay,he said to his team "I am sure glad that we didn't gave her no blood transfusions at all "and when I hear that I went back to sleep happy and I know that Jehovah God was with them.That was when I was 22 now I am 35.And I still keep up with some of my favorite doctors and nurses through email.One of my favorite doctors that is Jewish is now working at one of the bloodless hospitas.I guess I taught him a good lesson.But a year before I got baptized has one of Jehovah's Witnesess when I was 21 in 1995,and brother got baptized in 1993 when he was 18,and our brother got baotzed in 2001,and our mom got baptized in 1980 when I was first grade and brother was in the K.
I know your daughter be okay just hang in there and everything will be okay.You said that your daughter gets rash because of the ITP.Does she gets the rash on her right side of her face like red hot burning feeling.The reason I am asking that because on my right side of my face turn red burning feeling an d my ear.
I am looking foward hearing from you.
Melissa Loyd

Hi Melissa,

Thankyou for your post.I need all the encouragement and information I can get at the moment to be able to support my daughter at this time.
Yes she does get a rash on the side of her face, but I am not sure if it gets hot. I will have to ask her.
Melissa I would like to ask you some questions about your experience living with ITP. Would you mind sending me a private message with your email address?

Rose

Thanks for your reply.
I read another of your posts recommending vitamin D in the form cod liver oil. I recall you mentioning not to give omega 6? The cod liver oil I have has omega 6 in it as well as omega 3.Can you get it without omega 6? What else is vitamin D in the required amount?I do not know her present levels.

A good source of info on cod liver oil is Weston Price. As you may know, he was a dentist that traveled the world (don't know if he got to New Zealand) and found certain things were associated with good heath. The top three were unprocessed locally raised food, raw milk, and cod liver oil. Carlsons is the brand my kids take. Nordic Naturals is good too. For starters, call your local health food store.

Her diet is quite good, although she has bouts of eczema from dairy and hives after showering. I make sure my family eat as many organic products as possible with a range grains ,veges and free range meats. At the time she became ill though she was low in iron, if i recall I think the count was about 16. She had been eating a vegetarian diet for about a year at that time. We immediately insisted she eat meat again and she was on iron tablets for a time. We also took her to a naturopath. She had a hair analysis test done and was found to have a number of food in tolerances and sensitivities. These foods were eliminated or rotated to reduce her immune reactions.Her platelets went up to 46 in a few weeks, but she found it very hard maintaining the strict dietary restrictions so could only do it for about three months. She does avoid foods she severeley reacts to though.

She would do well to take digestive enzymes, both with meals and between.

The prednisone course is for 20 days in five days of 3,2,1,1/2, which began 8 days ago. She is also on a 7 day course of amoxicillin as she was at the tail end of a virus when she was started on the prednisone. No other meds.
I am very concerned about what may happen if this steriod course has no effect and very unhappy about the possibility of being scared into a splenectomy. I think these are the only choices in New Zealand.I feel as if I have time limit to come up with an alternative to get the platelets up.

Florastor would be a good idea. ITP is not that hard to shake. You are on the right track.

Thanks for your reply JMalak,
Have started my daughter on the probiotic and digestive enzymes. Also giving sesame seeds and oil a go.
Her platelet count dropped to 31 after the prednisone course finished.That's okay for now and gives us time to think about the next step if needed.
What do you think of thrombopoietin for the managment of ITP and what could the long term side effects be, if any?

Regards Rose

Originally Posted by Rose

Thanks for your reply JMalak,
Have started my daughter on the probiotic and digestive enzymes. Also giving sesame seeds and oil a go.
Her platelet count dropped to 31 after the prednisone course finished.That's okay for now and gives us time to think about the next step if needed.
What do you think of thrombopoietin for the managment of ITP and what could the long term side effects be, if any?

Regards Rose

Two good questions! Giving thrombopoietin to someone with ITP is a bit like dealing with a gas tank with a hole in the bottom by going to the Mobil station everyday for a fill up. It may keep some gas in the car, but it gets expensive quickly, and doesn't address the real problem.

In recent years, there has been increased concern that erythropoietin might not only stimulate red cell production, but also could trigger some cancers to grow faster as well. It thus wouldn't be a big surprise if similar concerns about thrombopoietin arise in the future.