ITP Personal Stories

Kid's Stories

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Joseph - 4 1/2

My name is Joseph and I am four and a half years old. I was diagnosed with ITP 1 year ago. I have had IVIG, WinRro, and prednisone. I get weekly blood counts. I usually go into the hospital every three weeks for IVIG. My first experience was so scary. My mom brought me to the doctor because I had big bruises all over my body and I didn't know how they got there. They took a blood test and the doctor called Mom at work and said to bring me to the hospital right away.

They poked me all day long. They told my mom they were checking for leukemia. They then told her I had ITP. She was so scared and I didn't know why. The doctors told her I would need IVIG for 4 days. I was at 17K was discharged with 650K. Each week I would go down.

When I reached 10K I would have to get another IVIG. I am very active and I don't understand what will happen if I jump and play. Will I ever get better? My doctors and nurses are so understanding and patient. When I'm giving them a hard time and mom is upset crying, they are so patient. They give me surprises for my bravery.

I want all this to go away now. Mom and I pray every night for all the people who have ITP get better. My mom can't understand why the doctors can't find the particular virus that is causing my ITP. We will continue to pray for answers and for all of us.

lewisc@cityofaventura.com

Mirrisa - 14

My name is Mirrisa. I am 14 and I have Chronic ITP.

I was diagnosed in 1999. I had gone down to the Black Hills with my grandpa and grandma. They thought I was

anemic. My grandma took me to a doctor in town. He examined me and took my blood. Then he diagnosed me with ITP. I was scared. He sent us to Rapid City to another doctor. He gave me platelets for a couple weeks until my folks could get there. Then 4th of July we came back home and the doctor in Rapid City us to one in Sioux Falls.

They did every medicine. Nothing worked. Then she decided I had to have my spleen out. Two weeks after we met the surgeon I had surgery. The surgeon came in and told me everything. He said that he did a laproscopic with my platelets only at a 10 thousand. He ran into major problems. I started to bleed on him. They ran 28 units of platelets through me during surgery.

I stayed in the hospital for a couple of weeks. My platelets didn't want to stay up. Then we went to another doctor in Sioux Falls. The new doctor sent me to Rochester Minn. We did blood tests and everything. I had spleen left in me from the 1st surgery. I had my 2nd surgery on Nov 17. He did a long cut on me, the old fashioned cut.

They gave me WinRho and that didn't work so the 5th day of staying there in Rochester I had to have blood

given to me cause WinRho brought my red blood count down. Nothing worked so they sent me back to SD after they got my platelets up to 25 thousand to be safe to ride.

Then we went to another doctor in Rochester. He started me on Chemo therapy. That didn’t work. Since I don't have more spleen in me, they decided just to give me a platelet transfusion. That worked. Now my platelets are up to 159 thousand and climbing.

I am only on one drug and it's called barley green. It works so try it. If anyone has low platelets try barley green. It's good for you but it also stinks.

Mirrisa (mirrisa_2000_2000@yahoo.com)

Trent - 3

My son Trent was diagnosed with ITP on his second birthday. He was going through the terrible twos and having head-banging tantrums. He became over excited on his birthday and went into a tantrum. I picked him up and placed him in his room. Later I was horrified to see purple finger prints on his arms and then I noticed little red dots all over his scalp and face.

I took him to our local doctor who checked him and said he had a lot of bruises. I felt so guilty and said I didn't hit my child. He explained he thought Trent might be a hemophiliac and sent us to the hospital. I couldn't reach of my husband so I went to the ER rooms at the hospital with my 3 month old in tow, where I waited for 6 hours to be seen.

They tried to do blood tests but couldn't find a vein for several attempts. His platelet count was 18 and we were told to return the next day. More trauma for my son, but he had a count of 32. The next day gave a count of 79.

We started to relax a little, being told it would almost certainly be a normal count one week later. It wasn't, it was 18. So we decided to 'go private'. First we saw a wonderful Hematologist who didn't treat children but referred us on. The next hematolgoist said if ever Trent had sores in his mouth to page her urgently. One day he did have these sores and a nose bleed when he cried, so I paged her - 11 times! - She didn't respond (later I learnt she had taken a post overseas). I didn't pay her bill and rang up the original hemo who referred us again.

By now I was desperate and couldn't live with the news that nothing would be done unless my sons count went as low as 10 (and then IV Immuglobin or steroids-which would only be temporary fixes and not without side effects). At this point I contacted a naturopath who put Trent on Vitamin C and Shark Liver Oil. Within one month of this (Trent had had ITP then for 3 months and had become so traumatized from the blood tests, he wouldn't go out of the house or look at an adult) the platelet count stabilized in the 60s.

When Trent had the condition for 6 months I contacted a second natropath, who has turned out to be wonderful. He treated Trent with a variety of Miasms - and gradually the symptoms have gotten less and less. (At one point he concentrated on getting rid of all Trents trauma - red marks actually appeared everywhere he'd had blood tests....) For the last 3 months Trent has been symptom free. We are due for our next blood test next month - I feel sure his count has gone up and I'm almost daring to hope that the ITP has gone.

I'd love to hear from other parents of children with ITP both here in Australia or overseas, and I hope that our story gives you the hope to keep looking for a cure.

Jenni and Trent (now just 3) jenni_downunder@yahoo.co.uk and jenniday@one.net.au

Louis - 5

My son was diagnosed with ITP in August of 2001. He’s 5 years old. His name is Louis.

He has always had nosebleeds, but I never thought it was anything serious, because I had nosebleeds as a child, but I did eventually grow out of it. Anyway, I noticed a bruise on his arm one day I didn’t think much of it because he’s a rough little boy, On another occasion, after a routine check up, I noticed where he had blood drawn from he had a very bad bruise.

One morning on August before he went to school he had a nosebleed, I stopped it and he was fine, he went to school, his first day of Kindergarten. He had a nosebleed in school, the school called me at work because the nosebleed wouldn’t stop, so of course I went to pick him up. By the time I got him in the car he was throwing up blood. It looked like it was old blood. I’m not sure.

I took him to his pediatrician. His Doctor didn’t believe me when I told him how much blood he had lost. I had to show him his clothes. He bleed so much that I had to take his clothes off. His pediatrician told me to take him to Children’s hospital, because his platelets were at 12,000. That’s when I learned about ITP.

Louis ended up staying in the hospital for three days. No treatment was given. They just wanted to watch him. His platelets ended up going back up on their own.

Louis did well, for a little bit. He had nosebleeds about 3 times a week. Some days were worse than others. He goes to see the doctor once a week to get a CBC to see where his platelets are. It gets very frustrating sometimes because his platelets go up and down all the time. They haven’t gotten over 100,000,

October, 2001 Louis had another very bad nosebleed. It started at home. After about 20mins I called the hematologist and he told me to take Louis into Children’s Hospital. By the time we were at the hospital his nose had bleed for about 45mins. We went straight to the back and got a room. His nose started to bleed worse. The blood was coming form his nose and his mouth. It was so much blood He cried and hollered because he could barely breathe. He had to get the blood suctioned from his mouth so he wouldn’t swallow it. The ear nose and throat doctor thought that he was going to have to stuff his nose because it wouldn’t stop bleeding. After about 3 1/2 hours of very bad bleeding it slowed down. Louis was given IVIG. It helped a lot.

Since then Louis hasn’t had another nosebleed, he’s been doing well other than the fact that his platelets go up and down like a roller coaster.

If you have a story related to mine, please, please share it with me, my email address is setheridge@wi.rr.com

Courtney's Challenge

I was very excited yesterday when finding this site. My daughter was diagnosed with ITP in May of 2000. It has been 20 long months. I read some of these stories and it sounds like ours, so here it goes.

May 2, 2000 I had noticed a lot of bruising on Courtney. She often had bloody noses. I didn't think much of the bloody noses since she had always had them . It ran in my husbands family. 5 minutes before we went to the doctors her nose started to bleed. The doctor thought she has ITP. I needed to put on some emla cream and get a blood draw. We waited one hour and went for the blood draw, her nose still bleeding. So I took her back to the office to show them she was still bleeding. By then she started vomiting blood.

The doctor told me to take her to Strong Childrens Hospital. When we got there her nose had finally stopped bleeding. It bled for 4 hours. Her counts were 5k.

Because her blood is Rh negative she could not have WinRho. She needed IVIg. She did very well with it . Counts soared in the 400k range. Two weeks later they were back down to 9k.. We got a call at 10:30 at night, We were terrified. We decided to do another IVIg and had good numbers once again. They began to fall low again but in a range where we just needed to watch.

In October of 2000 they were down again We did more IVIgs. Then we started her on prednisone in late Oct.. At first we were seeing some good numbers but that didn't last long. It was just another one of those band-aides not a fix. We began to wean her. Then on January 21, 2001 trouble began. A slip in the driveway (so we thought) landed us in the hospital once again. She was bleeding in her stools, going to the bathroom every half hour...ALL Blood. They checked her stools at the hospital we got back a positive for Chron's Disease..But there were sometimes false positives. She had the bone marrow. Good news Chronic ITP.

She had all types of Nuclear scans. Everything was negative. She also had a colonoscopy. That turned out to be negative for Chron's.

For two weeks we struggled in the hospital trying to find the cause of bleeding, me 5 months pregnant sleeping there every
night, my husband going back and forth from work and home trying to take care of my 9 yr as well.

We spent every weekend in the hospital from January - March . We decided to do Vincristine. She needed to take Danazol by mouth ane Immuran. She would also get Solumedrol and an IVIg along with it.

By mid March her counts came up and she was doing well.
June 2001 more blood in the stools but her counts were ok for her - 56K.Her average high for the past year had been 10K so 56K was awesome. We gave her another IVIg got her counts up and once again had a colonoscopy. This time it had shown she had ulcerative colitis. The prednisone had been masking it when we did the previous one. Finally we knew the cause, but what a bad combination. In Sept we tried something different for the pediatrics. We did Rutuxinab. No luck. Then tried Remicade for the colitis. That helped her stools so at least we were not worried about her bleeding.

That is about where we stand right now. No blood. Hher counts were 7K right before Christmas and we did Solumedrol that seemed to help for now.

We try to see the best in things. I just am so lucky that it wasn't
anything worse. My Daughter , you would never know she was sick. She is always happy always smiling. My neighbor said that she is his hero. He has cancer. He says when he has a bad day he thinks of her. Always smiling.

I hope this story can help someone. I know that the others have helped me Thank you!

Lisa (demanchick@juno.com)

Daniel (11)

HI , I have one heck of a story for you all!

My son Daniel (11yrsold) was covered in bruises... I mean big purple and red bruises. I examined him and asked him what had happened and he couldn't explain other than some football and rough play at school. My fiancé and I decided to wait one more day and then we would take him to the doctors just thinking that he had some bad luck this week.

Well, to my surprise my son didn't come home after school on that Monday and a detective came instead! She took me in for questioning and then proceeded to tell me that my fiancé has been arrested for assault causing bodily harm! I was in shock and in terror. I began to cry uncontrollably thinking that this was in fact true. Daniel was taken into the care of Children's Aid and put into a foster home and my fiancé was put in jail. I was a wreck with the two most important people to me gone and feeling I failed to protect my child when he needed me.

The next day Daniel was taken by the Children's Aid to Toronto Sick Kids Hospital and underwent a S.C.A.N which is a complete physical to determine child abuse. That evening the doctor called the foster home from his own home with the blood test results and told them to take Daniel to the emergency. His platelets were at a very low 10. He was put on gamma globulin and the platelets began to rise. 3 days later the platelets began to drop again. He is now to go for a bone marrow test to see if he has leukemia and boy am I scared. Meanwhile my fiancé is still being charged and the Children's Aid is still trying to gain custody of my son because he told the officer that he gets spankings sometimes when he does something really bad!

I would never allow anyone to harm my child nor would I allow myself to physically harm my child. I am going through hell right now and wish that they would just read about this ITP and realize how wrong they are and how much pain they are causing my son and our family. Wish me luck , though I feel it's pretty much an open and shut case. I just hope and pray that my boy doesn't have something serious like leukemia.

Patricia (trishe2002@hotmail.com)

Tracy

It was 1999 and my oldest cousin, Tracy just graduated 8th grade. She suddenly started getting lots of bruises all over her body. She got a nosebleed one night that wouldn’t stop bleeding, so the next morning Tracy’s parents took her to her doctor. The doctor was a little worried because Tracy had so many bruises. So they sent her to get blood work done, it was Friday afternoon, they said they would call them back on Monday to let Tracy know the results.

Well, they got a call the next morning saying that she was in critical condition and to get her to Children's Hospital. They found out that she had Mono. They said that the Mono caused her to develop ITP. So first they put her on prednisone. She stayed on that the whole time while trying other medications such as IVIG, and cytoxen. She also had to have Chemotherapy. It was not as much as cancer patients, but she did still lose a lot of her hair. Since she was on the steroids for so long she blew up like a balloon. No one could even recognize her. It turned out none of the medicine was even working for her. She decided to get a splenectomy. They tried to do the surgery by laser, but there was too much fatty tissue from the steroids so they had to cut open her stomach. After she got her spleen removed they started taking her off the steroids hoping her platelets will stay up. Fortunately, they did.

Tracy went into the hospital in April for two days because her platelets were low again. They ran some tests and released her after two days. On June 29, 2002, Tracy came to my 13th birthday party. She was very sick with a cold so she lay in bed the whole day. However, she came outside to sing Happy Birthday to my twin brother, Alan and me. Then on June 30, 2002, we all went to a wedding shower and Tracy was fine; she said she was doing a lot better. On July 2, 2002, she had a doctor’s appointment. She was complaining of chest pains so her Mom took her to Children's Hospital's Emergency Room. After she was in there for a couple of hours she passed out in the elevator. Later that day she ended up passing out again and they had to resuscitate her. She passed out again and they couldn't wake her back up. On July 2, 2002 Heaven welcomed its newest angel, Tracy Ann Mihalchik.

Tracy's Cousin, Christina BingOOOGram319@aol.com

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