ITP Personal Stories

Kid's Stories

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Longer Stories

Caelen - A tale of bad and good luck with a happy ending.

Nico's Story - This is a story with many lessons for the whole family

Erin - 6

Erin was diagnosed with ITP and had platelet counts in the 10K - 15K range when she was 3. We saw a variety of doctors with a wide range of approaches (Erin's mom is a healthcare professional). Today, Erin's count is consistently normal.
We think that the key to Erin's recovery (counts in the 150K - 300k range for well over a year) was the use of Dr. Ba's Get Well International ITP and Bloodwell herbs. The herbs worked only after we administered them with 100% consistently twice a day. We used about one-third of the adult dose, although Dr. Ba's recommended dose was one-half of adult dose. The ITP caps were put in applesauce and the Bloodwell was made into a flavored syrup. On a few occasions we tried to 'wean' Erin off of one or the other herb mixture or to reduce both. On every occasion, except the last, her count dropped.
After almost 18 months on the herbs, Erin got a bad sinus infection. While she was taking the antibiotics and other meds, we stopped the herbs entirely. Her count has not dropped in the past several months since we stopped the herbs.

In addition to the herbs, we also used the following other changes during Erin's recovery:
1. small monthly doses of phosphorus
2. more vegetables
3. less sugar
4. avoidance of allergens (Erin's allergies and the ITP may have been closely related)
4. a daily effort at stress reduction
5. positive thinking about our eventual success

We are not sure if we were lucky or just able to put together the right combination of factors - it was probably both - but we would recommend this approach to parents of ITP kids.

Erin's Parents (scottsdalehomes@yahoo.com)

Austin - 11

We had tremendous results treating the ITP of young Austin Taylor(11) with acupuncture and herbology. The Doctor was C.S. Chen of Dublin Ohio (614 ) 764-9500.

Austin's platelet count was down from 7 to 5 when he was in the hospital. They were ready to transfuse, then remove the spleen when I called Dr. Chen. He does not treat children but since this was life threatening and I was his student he made an exception. He first told me to chop garlic cloves and make a poultice and hold them on the soles of his feet (on the kidney point Yonquan)for 30 minutes to an hour. For the first time in a week the poultice did what no doctor in the hospital could, stop the profuse flow of blood from his nose!

The hospital’s use of steroids, globulin treatments, nasal packings, and I.V.'s not only made him miserable but allowed his condition to go from bad to critical. Within three weeks of acupuncture and two rounds of potent Chinese herbs (thank you Min Tong Ent.) Austin’s blood count was returning to normal. He was back in school, with a spleen, and was being weaned from the steroids which eventually caused him to gain over thirty pounds!

Needless to say if we had not removed him from the hospital and allowed Dr. Chen to treat him there is no idea where he would be today. Too bad we still have a hospital bill for 20,000 dollars for the worst week of the poor child’s life!

Susan and Matt sqatdt@aol.com

Zach

My son, Zach, was first diagnosed with ITP in 1995. He was 2 1/2 years old at the time. He presented with many bruises all over his legs. Since he was an active toddler, we thought that they were from falling and bumping into things. At a check-up for my older son, I happened to show our pediatrician his legs. He took one look at him, and said that was not normal. He sent us for bloodwork and we went home. Later that evening, he called us at home and told me not to let him fall or bump his head. His platelet count was at 50,000. Trying to keep a toddler from playing is almost impossible. We went on several walks, making sure he was strapped in tight in his stroller. The next morning we went back to the hospital (which was over an hour away) to have his platelets checked again. They were down to 22,000. Our Dr. assured us that he thought it was ITP, but he sent us on to a University Hospital which was another 3 hours away. By the time we got there, he had bruising around his ankles where his socks were in contact with his skin. We saw a haematologist, who examined him and started him on IVIG. The following three days, his platelets continued to rise. We were sent home, relieved that the ordeal was over.

A month later, we were coming home from a weekend trip when Zach's nose started to bleed. We had trouble stopping it, and since we weren't far from our pediatrician's office, we drove to see him. After bloodwork, we were told that his platelets had dropped again. He was given another dose of IVIG and we were sent back to University Hospital - this time to have a bone marrow test done. Thank God, it came back negative. We continued on this roller coaster ride for about 9 more months - receiving about 7 more gamma globulin treatments. Each time he received them, his platelets would go up. Then about a month later would drop fairly low again. Finally, his platelets started to stabilize. They were never in the normal range, but they stayed around 50,000. As he grew older, his counts started to slowly rise until they finally reached that "magical number" - over 150,000. He was finally in remission!

Which brings us to this point in time (February 2004). Well, it's been 9 years since he was originally diagnosed with ITP. We've stopped worrying about him, but it is always in the back of our mind. He's now 11 years old and once again, we find an excessive amount of bruising on his legs. He has just finished a round of antibiotics - had a bacterial throat infection. His legs are black and blue from his thighs down. He is very depressed and worried - he knows it is back! After a CBC, we are told that his platelets are at 60,000. We are all devastated. None of us want to get on this roller coaster again. Doctors think that it is just a reaction to the antibiotics, but we think differently. We go see our pediatrician, whom we haven't seen in several years. We have moved to a different town, and he had moved to a different city. Our trip there is now around 4 hours. He says it could be from the antibiotics, but it could also be his ITP again. He tells us to monitor his blood and we'd stay in touch. His platelets continued to fluctuate between 40,000 and 60,000. We were sent to see a haematologist again, and he said that we would not do any treatment, unless they dropped more. However, he did start him on folic acid because he said this sometimes jumpstarts the body into producing normal platelets. A couple weeks later, 29,000. They want to repeat the bone marrow, which is not good news. It's a very traumatic event for an 11-year old. He's a tough kid - plays goalie in hockey and back-catcher in ball - but this was hard on him. Again, thank God, the bone marrow was fine. He was started on Prednisone in April and his count has been going up. We don't really like the effects of the prednisone, but because he is very active in sports, the Dr. wants him on it. One benefit - he is a very picky eater, and since being on the medication, he eats anything and everything!! We are just starting to taper off his medication. Hopefully this will be the end of his ITP. But you never really know.

An Anxious Mom (dskurtenbach@mts.net)

Louis

My son Louis(4.5 years old) was diagnosed ITP a few weeks ago-early march 2001. He revealed the tell-tale bruising and had purple collar rashes and pin-prick spots on chest and back. His platelet count was around 6,000 (I believe normal ranges from 150,000 to 400,000). I cannot describe how my stomach sank when I heard him say "six thousand".

Note: three weeks prior to the bruising Louis had suffered a mild virus - the doctor feels this was the trigger. Louis also suffers from mild eczema and has since babyhood.

This was of course very distressing but the doctor was opposed to any of the immediate treatments and we all hoped for the best. One week later much of the bruising had faded and his platelet count had risen to 126,000. We are all very relieved and hope there will be no recurrence - the hospital feels that a recurrence is unlikely.

During the 'scary' week he showed mild sign of stress, and unusually took afternoon naps (siestas). In himself he seemed very happy but definitely picked up on the stress my wife, daughter (7) and I were experiencing.

Small actions we took included:

A new, small red toy was used as a buddy that shared his meals and we visualized "Platelet" getting stronger. This was fun.
We altered his diet to reduce the amount of refined sugar, meat and chocolate and removed other components i.e. garlic and onion and diuretic juices e.g elderflower.
We introduced many more vegetables.
We banned the scooter and bicycle for both children for the week.
Our next actions had his count remained low would have been to visit an alternative healer - we have used a Tibetan herbalist from the Eden Centre in London who has very effective treatments ( I am scientifically trained and generally quite cynical but have seen it work).
He continued with his regular pre-school and we advised the school staff of his condition. I think the continuation of as normal a life-style as possible important - any change in pattern for a small child, especially noticed in our Louis, causes stress and this is probably bad.

We believe kids are capable of understanding a lot more than they are generally given credit for and we tried to explain the situation in as simple, non-scary terms as possible. The whole family pulled tightly together and I think a real positive change has occured as a result of this shock. Today matters. Big time.

I feel for all the ITP sufferers and friends and families of sufferers. I wish us all the strength to accept and good luck.

Rudy (rudy@soulman.co.uk)

Conor - 5 1/2

My name is Conor Bernoski-Price. I am 5 1/2. I had ITP when I was 3 and 4 years old but then it went away and we thought I was all better. I don't like it but I just had to go to the hospital and have finger pricks and one night I just had to stay there almost the whole night. I hate not climbing or playing t

-ball. I had blood blisters and nosebleeds and petechiae on my legs and neck. I just had to take pills and swallow them with water. I miss playing baseball, but I do get to play basketball and soccer. I couldn't climb high stuff or ride my bike. I had to take 2 pills at night and 2 in the morning.

One day at school the teacher called my momma because I had blood blisters and bruises and we went to the hospital and stayed there almost the whole night and we didn't get to go to her volley ball game. And I didn't even like those finger pricks. But after the finger pricks I got a Popsicle.

Now my medicine is working. My score is 64 (64,000) so I can play tball and hockey and climb now . I wish my score was 160. We missed Dr. Bash when we didn't see him, but now we see him.

Now I like playing tball. I got to play first base and bat. Now I can play with a hard ball. My mom pitches to me so I can bat when we practice. Once I got an autograph from Rusty Greer on a Ranger ball. I didn't even like that it came back. Now I have to get finger pricks again. Once I got a finger prick and I didn't even cry.

From Conor's Mom: I read Conor (the censored version) of many of your stories and he was very comforted by hearing experiences similar to his own. He had chronic ITP until one year ago when his counts returned to normal and the doctors had told us he had outgrown it. Two weeks ago we were very disappointed when within 24 hours the petechiae and blood blisters appeared with a "score" of 6. He is doing the Prednisone again, and so far it is working, although the side effects are dreadful! We both appreciate your stories and wish you well.

Conor's Mom

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