From diagnosis to treatments to recovery, read personal accounts of these children with ITP. The stories of their experiences are varied and educational.
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.
2009 Update - Five years later, her ITP has not returned. We've received dozens of emails requesting information about the herbs. Their new website is www.getwellnatural.com.
Erin's Parents email@example.com
I am 15 months old. I was sick on New Year's Day - they were not sure what it was - but the doctor put me on Augmentin. I was running a fever of 103 and coughing terribly. Five days after the medication was gone - Mom noticed bruises. At first she just thought I must have fallen on the rocks outside - but a few days later she noticed more and more bruising - on my scalp even!
Then the red spots appeared. Mom took me to see Dr. "S" and I was immediately diagnosed with ITP. The blood tests confirmed this. Dr. "S" recommended a helmet and no climbing. He wanted to "watch" me over the weekend. Mom had read lots of stories here and was paranoid that I would start bleeding. She called back to talk with Dr. "S" about the next appointment and when she couldn't reach Dr. "S" got angry! Dr. "I" got on the phone to answer questions and became concerned that I was not being treated.
My platelet count was 11,000 and Dr. "I" said 20,000 was his limit for treatment. Since I was 15 months and probably wouldn't sit still and watch TV all weekend - he recommended PediaPred. Mom was relieved. On Monday my counts were 39,000 and on Friday they were up to 165,000. I am going to stay on the steroids for a few more weeks as they wean me off them. I hope this fixes me - I sure have Mom and Dad worried!
Daniel was doing really well (no bruises at all!) after two weeks of the Pediapred, so we did his well baby exam (he got his HIB shot) and began to reduce his dosage to 2 times a day. After 4 days, the bruises returned! His platelets were at 16,000. We upped his dosage again and were referred to the Phoenix Children's Hospital for closer observation. The doctor there said that the HIB could have triggered his immune system to over react again and recommended we reduce his dosage again. His platelets had returned to normal (176,000). We are four days into the reduced dosage and so far no bruises!
We continue to pray and hope for the best - but at this point it is up to Daniel!
Daniel is doing great! We weaned him off the steroids in mid-March and he continued to bruise for several weeks. We watched him closely during this time - but by mid-April - he appeared to be completely fine! Our bout with ITP lasted approx. 3 months. I still worry when he gets ill - but so far we just keep him off Motrin and any cough/cold medicines that contain expectorants (these supposedly affect the immune system). I hold my breath for the day he will require antibiotics again and pray they won't trigger a relapse!
Epilogue - 2
Daniel is now 4 1/2. He has had the usual cold and flu illnesses and has taken antibiotics (Not Augmentin, though) for strep throat with no side effects or reoccurrence of ITP. He does gymnastics and is leading a very normal childhood.
Hang in there to all you mothers and fathers who have small ones with this disease! It is not fun - but most cases do correct themselves!
Daniel is now 10 years old - he has had issues with Asthma and Acid Reflux for the past 4 years. He responds well to prednisone when needed for the Asthma although that has weakened the enamel on his teeth. He is getting better with age though. We are not sure if the immune system disorder has anything to do with this but he has shown no signs of ITP.
A Mom's Story
My little girl was 7, as pretty as could be with long blond hair and blue eyes. She looked up at me and said, "Mommy, I have a black and blue on my hand." I didn't think much of it then because a thumb print was all I could see. But as the days went on my child looked pale and not right to me. I took her to the doctor and he seemed to laugh at me and said, "You worry too much. She's as healthy as can be!"
He took a blood test to just please me, but in two hours he called and said for me to take Danielle to the hospital immediately. Her platelets were only 7,000 and he didn't know why? I took her to the hospital and tried to hide the tears in my eyes and how scared I was had to be held inside! She was just a little girl she could not understand all the needles and the medicine when she didn't feel sick.
They gave her a spinal to rule out all the rest, then came the prednisone. That really didn't help at all, because soon as they took her off of it her platelets would fall. I then met other doctors who said, "Lets just remove her spleen, she doesn't really need it then she'll have more platelets than she needs." I believe God was with me because not knowing why I said, "No she'll keep her spleen, I think she needs it."
I'm was sure there was a Doctor out there who will felt like me so I searched everywhere. Then I found a doctor who took her off the predisone. He said it was worse than the ITP itself. He treated her with gamma globulin for three days. Her platelets went to 550,000. Yes they did drop over the months ahead but stayed in a safe range. Now my little daughter was going back to normal... no more moon face and mood swings. God has given her back to me.
Danielle went for weekly blood counts then monthly. After about a year and a half the doctor said she was in remission. How happy I was! Then we did yearly counts:120.000 - 99,000 which could be normal for her.
Now at the age of 20 my daughter had a wisdom tooth pulled. It was a hard on. They had to cut the bone. Two days later at least 4 bruises were on my daughters body. I didn't want to face it but in my heart I knew we had to have her blood checked. Her platelets were 2,000. Here we go again! Back to New York we go!
At first it was a pain seemed she was being treated every week. Then it started to go longer. Now its been 2 years. She's now 22 and her treatment was 6 months ago. Even though she's staying on the low side, she's not a bleeder. But the doctor thinks she's going back into remission. (I hope)
But the doctors can only do so much. There's not enough research on ITP so we must all pull together, search and compare and maybe with the help of God we will find the reason for ITP and not a band-aid. God Bless all of you.
Danielle has NOT been treated since she was 22 yrs old, about9 years ago. She has held an outstanding platelet count that has ranged from 185,000-230,000. She is now 31 yrs old and 7 months pregnant... So, guess what happens next??? Her platelets were 220,000 the day she found out that she was pregnant. Little by little they have been dropping. Her last count was last week (April 1, 2009) and they dropped to 115,000.This is all usually expected during pregnancy. The doctors want to keep her above 100,000 for delivery. She goes back tomorrow for another platelet count. Keep our fingers crossed. Everything will be fine. We all have a close eye on it. She's doing fine and keeps a positive mind and the baby is doing great. Little Sara should be here around June 18,2009. -We will keep you updated on her delivery. God Bless!!!
Danielles Mom (Cnigro99@aol.com)
Nico's Story - This is a story with many lessons for the whole family