ITP Personal Stories

Kid's Stories

1 | 2 | 3 | 4

CHASE - 27 MO.

MY NAME IS CHASE JOHNSON, I AM 27 MONTHS OLD. I WAS FIRST DIAGNOSED WITH ITP NOVEMBER 1997, BY JANUARY MY COUNT WENT FROM 3000 TO 220,000. WE WERE SO EXCITED! IN

MARCH, I WAS DIAGNOSED WITH JUVENILE DIABETES, BUT THANK GOD, WE HAVE MANAGED IT WELL. LAST WEEK, MY MOMMY NOTICED SOME RED BLEMISHES ON MY SKIN, AND TOOK ME TO THE DOCTOR TO FIND THAT MY PLATELET COUNT WAS DOWN TO 19,000. NOW THAT I'M TWO, I LIKE TO RUN AND FALL A LOT BUT I WASN'T ABLE TO ALL WEEKEND. YESTERDAY, WE WENT BACK FOR ANOTHER COUNT AND IT WAS DOWN TO 10,000. WE ARE PRAYING THAT MY PLATELETS WILL COME BACK ON THEIR OWN. I PRAY WITH MY FAMILY FOR ALL ITP PATIENTS....IT'S NO FUN TO HAVE TO BE SO CAREFUL!!!

Chase's Mom and Dad

Help from Legos

I was diagnosed with ITP when I was 5 years old. When my platelet count became dangerously low, my doctors were worried that I would have a brain hemorrhage. Naturally, my parents became very distressed. My mother who had recently become interested in alternative therapies, taught me to meditate.

As I was a very active child, the meditation not only became an escape from the boredom I was experiencing, but also a great help, I believe, in my consequent recovery. I vividly remember the little Lego men I visualized working away in my bloodstream. This experience changed my whole outlook on life and taught me the power of positive thinking.

Ella, Sydney

Ashley

My name is Ashley. I live in Alaska with my Mom and Dad and little brother Conor. Yesterday (Friday, January 22) my Mom took me to the doctor because I had a lot of little spots all over my legs and some all over my body. I also had some really dark purple bruises that I didn't even remember getting.

When I got to the doctor, he was pretty sure that I had ITP right away. He took blood out of my arm and my count was 7000. He sent us right to the hospital. I was really scared so the doctor gave me some chocolate ice cream. Then the doctor and nurses put a 'heplock' in may hand so that they wouldn't have to keep poking me. It hurt and I didn't want to do it again. I was good and didn't move, but it got messed up and I had to do it again.

I was really tired and fell asleep. They gave me benedril, solumedrol and WinRho. I stayed overnight because we live 90 miles from the hospital and there was a big wind storm at the hospital and a snow storm (1 foot) at my house. I came home today with the heplock still in my hand. Tomorrow morning I go back to find out if my 'count' is better. I really hope so 'cause I can get the heplock out if I don't need more Medicine.

I cry a lot because I'm afraid that I won't ever get to be like other kids and play like everyone else. I'm afraid that other people will laugh at me because I have the heplock in my hand. Sometimes I think that I did something to make myself get ITP. But my Mom tells me it isn't anyone's fault.

I'm really scared because I don't like all of the needle pokes and my Mom and Dad are very worried but try not to show it. Tomorrow we will find out what to do next.

Ashley's Parents

Jackson

On February 14, 1999 Jackson York was diagnosed with having ITP at Children’s Hospital in Boston, MA. Jackson was brought to Southern New Hampshire Regional Hospital on February 13, 1999 where she was admitted overnight and then sent to Children’s the next morning in fear she had leukemia.

Jackson was brought to the hospital mainly because she had little red/purple spots over her body (petechiae) and some blood was noticed in her last bowel movement. She hadn’t been feeling well for a couple days prior with cold symptoms and noticeably clumsy and bruising was more obvious than usual. Her gums started to bleed in the ER. Her blood count in the Emergency Room revealed the platelet count was only 3,000 (normal is 150,000-450,000), this was quit serious. Platelets are in the blood and they cause the blood to clot so you don’t continually bleed.

An order of IVIg (immunoglobulin) was ordered and she was given this intravenously through the night to increase the platelet count. The next morning we were told the labs came back with uncertainties about the possibility of leukemia. Children’s Hospital came to NH and transported us via ambulance. It was a remarkable sight to see 4 staff from the Children’s Hospital Ambulance walking down the hospital corridor to retrieve her. It was with great relief that she was going to be in the best care now.

We were greeted by several people at Children’s and brought to a small quiet room immediately to discuss the testing that we were about to endure. Dr. Caroline Bennett performed the retrieval of bone marrow and Jackson was a perfect patient. After a few emotional hours we were told she did not have leukemia and the diagnosis would be ITP.

Jackson was given another several hours of IVIg through the night and released on February 15, 1999. We had continuous visits to the hospital blood laboratory where they retrieved blood from her foot to measure the platelet count. The first withdrawal we met Kris Mansor (lab technician) and our family bonded with her immediately and she was the only "drawer" from that point on. Kris went above and beyond her duty in making Jackson’s visits exciting.

Of course there was a fall when her platelet count was 45,000. She fell backwards in the playroom and her head landed on her little red rocking chair and caused a cut with a lot of blood. Children’s Hospital was called and they instructed us to meet Hematology in the Emergency Room. After another day of testing, you were released and sent back home again.

On June 24, 1999 she had her last blood draw. Dr. Valerie Atkins spoke to Dr. Neufeld in Children’s Hematology Department and he cleared her of ITP. Hurray! Hurray!

Jackson's Mom

Tommy

I wanted to tell Tman's complete ITP story and history so y'all could compare any similarities with me. Also, next month (May, 1999) will be 6 mos. from diagnosis and 8 mos. since we know now that he had it. Here goes:

Tommy was born 3-10-96. I had several miscarriages before conceiving him and couldn't maintain a pregnancy or get pregnant easily. I went the fertility specialist route. After a year and half of heartache, I became pregnant with Tman. I had to be checked weekly for hormone blood levels etc. to maintain the pregnancy. I developed gestational diabetes in the 7th month and had to go to bed rest. Tommy was induced and we had a terrible 22 hour labor. I hyper-contracted (very rare) for 16 hours before they performed a c-section. I had a postpartum depression from hell with panic attacks (runs in my family).

Tommy developed SEVERE colic at 3 wk. of age (also runs in family). He would scream for 4-6hrs at a time day and night with only 30-45 min. naps and 4-6 hours of sleep at night. Larry and I went through that for 9 mos. !!! Tom teethed early as well and it was very painful for him (he got molars at 4 mos.!!) Our Doc was blown away by this kid! Then at 9-10 mos. chronic ear infections started and we were in the docs office every 2 weeks!! On & off antibiotics constantly! Tubes were put in at 20 mos. Ear infections ceased at 26mos.

Tommy had a mild virus at the end of Aug. and again in early Sept. of 98 (he was 2 1/2) that's when the bruising started but we didn't really notice it until around Halloween. I became concerned but my hubby thought I was overreacting and said, "Let's just wait this out. He's a toddler with pale skin. He's going to have bruises."

Tommy went from day care to home care with a friend in Oct. By Nov. she mentioned his bruises to me and we started really watching his activity. She reported that he could barely bump something and have a TERRIBLE bruise. By then my hubby was worried too. We made an appointment to see the doc the Monday after Thanksgiving.

This is where it gets really ugly!! We went to my grandma's for Thanksgiving. Tommy had developed a small blood blister on the inside of his lower lip. Sat. night it popped. I was at my parents house (on same property) when it happened. My grandma came running up there shouting that he was bleeding and they couldn't stop it. I found Tommy with a dot on his lip (size of the dot in amazon.com on the site) that was streaming blood. We headed for the ER. When we arrived, it was worse. Tommy and I were both covered in blood! We had soaked 2 out of 3 towels we brought. They put us in a holding area and made us wait for 3 hours!!!! By this time, (and I kept asking for medical attention!) Tom's clothes were soaked through and he was getting weak.

I was soaked and so were all the towels and everything around us!!! The stench of blood was making me sick. Tommy was having trouble breathing because he was about to choke on his own blood. This made us all panic. I went to the front desk and asked them how much blood a baby can lose before they go unconscious? I told them I was taking him to an ER where they would DO something!!!

They got the doc back to us and he removed Tom's clothing. We were having to pull chunks of semi-clotted blood from his mouth so he could breath!! When he saw the bruises, we were rushed to a room and a medical team swarmed on us. They had us leave the room so they could apply a clotting agent to the lip and sedate him (which backfired). They told us they knew he hadn't been abused (we thought we were going to jail!) and asked for history. They wouldn't tell us what they thought it was but indicated he needed to be admitted or released to his pea's care immediately. I went in the bathroom to alternately pray, throw up and cry.

We saw the doc 24 hours later at home. Tom's count was 15k. After checking in at TX Children's, the next morning, they were 7k. There was bruising and pettier everywhere (over 75%) of his body. The docs said he might have Leukemia too. He received IVIG (and no emla cream was given or even mentioned as an option) for 4 hours. His counts soared in 7 days he was at 398k.Leukemia was ruled out. In 7 more days he was at 198k.Then down to 98K etc. We were back and forth to TX Childrens and our ped.

Since then we've had the ear bleed, a nose bleed and several close calls with the head. His counts in the past 6-8weeks have stayed above 50k and we are grateful even though he had the ear bleed and blood plug in his ear at 80k! The docs aren't sure what to think of his case. The real test will be to see what happens in the next 6 mos. and what happens if he gets a bad bug.

Thanks for letting me share my son's story. It has been difficult to watch my "miracle baby" go through this. I want to enjoy the higher counts but I just never know what is around the corner for him. At least he's been doing great with no sign of a drop for the past 2 weeks! Love to all of you and let me know any comparisons you have. I'm trying to make sense of all this!

Cherie, Tommy's Mom

Reid's Story

My name is Reid. I am 8 years old. Once I had to go to the hospital and have a heplock. It was really scary. Then I got out of the hospital without a heplock. When you have to get finger pokes, it can make you cry. But it doesn't hurt.

I can tell my ITP is acting up because I get sleepy and I get bruises that I don't know where they came from. But you forget about it after a while. I feel really happy when I don't have to have finger pokes for a little while. When I think my ITP is starting to come back, I tell somebody and I try to take it easy. After a finger poke, you can go shopping. Once my mom took me to Toys R Us after the finger poke.

That's my story. The End

Lori815@aol.com

Johnathan

My son Johnathan was 4 years old. It was in Sept. of 1998. He broke out in little red and purple spots all over his chest and back. I thought that this was very weird so I took him to the doctor that morning. The doctor said it was probably ITP and not to worry too much. He said that he will do a blood test and then probably have to put him on medication and have a few blood tests but that's it. Well I took him for the blood test and the doctor called me an hour later and said that I need to bring my son to the Childrens hospital in Hartford now because his count was only 1000. I was terrified. He said to drive slow because any bump and he could bleed out. After my husband and I got him there they put in the IV and he cried so much that his whole face was now covered with those little spots. The specialist came in and explained everything to me and what steps we would take. I felt a little better.

At about ten o'clock that night they started IVIG and by eleven o'clock he was having trouble breathing. His fingers were turning blue and it was awful. They immediately stopped the IV and gave him oxygen and he got better from the allergic reaction. So the next day the doctor had to do a bone marrow test to rule out leukemia. A few hours later they told us that it wasn't leukemia and that he would have to get IV steroids for the next three days and then we would see how his platelet count was and he should go home. Four days later his platelet count was up to 90,000 so they sent us home with blood test every week. His count went up and down for a few weeks but finally it straightened out and now he is doing great. He has a very good platelet count of well over 250,000. We have to get it checked about every six months just to be sure, but thank god he is doing great

Mac24cam@aol.com (Caroline)

1 | 2 | 3 | 4