ITP Personal Stories

Kid's Stories

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Daniel's Story

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!

Epilogue

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!

dsiems@cox.net

11 Years Old and Thought My World Was Ending

It's 3PM, my hands are sweating, my heart is pounding and my brain can't think. I sit and wait in anticipation in the doctor's office, all I can think is where did the nurse go? I hear a knock on the door; it's got to be the doctor. Sure enough it is, I prayed for good news, but it was everything besides that. It turns out that my blood tests came back that my platelets were at 15,000 when normal is between 150,000 and 300,000. So I was so sent home, I packed my stuff and off to Schidner's Children's Hospital I went with tears in my eyes.

At eleven years old I thought my life was over. I was supposed to go to my friend Loren's for her birthday party, instead I was stuck on a operation table with a nurse sticking anesthetic in my hip with a needle pressing on my hip bone just to get bone marrow from me. At this time I still didn't know what was going on. Finally after hours of pain and tests, I thought it was over and I could go home. I was wrong; this was just the start of a life long condition called ITP.

It's now six years later and I now look at the world in a different perspective all because my life was changed from one innocent blood test. I have to go through my life knowing that I live with an incurable disease that could turn deadly at any time, but would never be able to tell.

I always bruised a lot during the summer and my parent's never thought anything of it, until it was time for my yearly school physical. My mom was nurse for the doctors office, so my dad brought me up to the office, we went through my normal exam, and lastly took my blood and allowed me to go home. Less than an hour later after I returned home the phone rang. I answered the phone to find out it was my mom, she told me that something was wrong with my blood test and that dad had to bring me back up there. So I got back into the car and rode up to the office. I was brought into a room where they took blood from my arm and my finger. My platelet count was down to 25,000 and that's when everyone but me knew I was in trouble. My doctors sent me home and told me to go to HIP in the morning.

I arrived at HIP where my old doctor looked me over and sent me to the lab for a blood test. I went had the blood test done and returned to the waiting room. I sat there hands folded, legs crossed, and totally confused as I waited for the results to come back. The results were finally back and the doctor brought my mom and I into her office, by the look on her face I knew the news wasn't good. I didn't pay much attention until I heard the word hospital. They still couldn't diagnose me until more tests were taken.

Next thing I know I was crying my eyes out to my house, while I packed my stuff, and all the way to the hospital. I felt so angry inside, I kept questioning myself 'Why me'. That question is still not answered. Upon arrival at Schidner's Children's' Hospital, I was brought up to the fifth floor and put in a room with a little girl that had sickle cell anemia. I settled down and put everything in my room, after awhile a nurse came in and took blood again from me and sent it to the lab. Next thing I know nurse came in and took me down stairs to an operation table where I was told they were going to take bone marrow from me to test it. At that time I didn't know why and didn't think it was going to hurt. Oh my god was I wrong. The nurse only numbed the right side of my hip and then took this huge, long, pointy needle and stuck it in my hip all the way down to the bone to scrape bone marrow off of it. It hurt so bad that I can't even begin to explain the pain.

Once it was over I was wheelchaired back to my room where I got to rest. If the results of the test found that I had no platelets in my bone marrow, I would have been diagnosed with Leukemia. It is such a heart wrenching feeling inside knowing that I had to live with the result and taking the chances of having my dreams crushed all because of one innocent blood test.

Finally after all the tests were done and the results came back I was diagnosed with chronic ITP. This blood disease causes my platelets to fluctuate up and down. Mine were down to 15,000, a very dangerous level.

Even though it is rare for people to die from this disease it is still possible. I was eleven years old, teary eyed, and scared for my life as I looked up at one of the doctors and asked if I was going to die. He assured me that my life was in good hands and I trusted him.

In most cases in children, they have it once and it goes away. Well after I was released from the hospital, I figured I could go home and go back to my normal life. Guess again. I was stuck on yucky tasting medicine that I refused to take unless it was in a gelcap. This medicine not only restricted me from dancing and gym, but it made me eat all the time. I did nothing but gain a whole bunch of weight after I had just spent my summer losing it all. I had hit a stage of depression where all I wanted to do was starve myself, but I couldn't the medication wouldn't allow me too.

School had started and I was still on medication. My platelets had flew sky high and I was so excited because I felt normal again. I could dance, play, and even earned my hope back. That hope was all lost again after three months out of the hospital, I was pulled from school and put back in it. The results of a weekly blood count had showed that my platelets had dropped and the prednisone wasn't working.

I arrived at the hospital in the late afternoon. They showed me my room once again and this time instead of being given pills they gave me and IV of IGG. It wasn't, as bad except I had to walk around with a pole. They gave me 10 bottles of IGG and they cost $1,000 a bottle. That didn't exactly thrill my parents, but my health was what was important. I only stayed in the hospital over night because my count had gone high enough so they could release me to see Snow White on Ice.

I went home that night after the show and just relaxed. If I learned one thing from this condition, it's certainly not to give up hope. Once you lose hope you give up on everything. If was I to give up on this condition and let it take control of me, I may not be here right now. Now that my condition has been stabilized for about five years, I'm starting to show symptoms for Lupus and there is a possible chance that I carry the prothrombin gene mutation. I think I'll just leave these adventures for another time in my life.

Having this condition proves who your real friends are. I lost many friends when I gained weight and couldn't do any of the fun stuff that they wanted to do. I stuck to the hope that the Lord up above planted in me. If he never did I wouldn't be as strong as I am. At the hospital I looked around and thanked God that my condition wasn't as severe as the others there. Many people go through life not knowing what it's like having medical problems. I know and I use what I've learned to help others. Your life is the most precious thing and when things interfere with it many give up but instead I face it to battle in through to the end and that's what I plan to do with my ITP no matter how long it takes.

Tweety1333@aol.com

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. Danielles Mom (Cnigro99@aol.com)

Heather - 16

When I was 6 my Mom told me she noticed these weird spots on my back one day while giving me a bath. A couple days later I got more so she took me to the Dr. and I guess that was when I was first diagnosed with ITP. Well,... I don't remember everything but I do remember a few big things.

I remember that they sent me to the children's hospital where I had my first bone marrow biopsy done. That was very scary for since I was only six years old. I remember they tried to sedate me but I wouldn't clam down and the flamingos on the wall were spinning..., there was flamingos painted on the wall I wasn't going crazy =) After they were done I sat up and threw up and it was like that the rest of the day...I would take one bite of food and throw up. It was terrible.

I also remember there was a point that my Doctor told my mom not to even hug me for a while because I would bruise. It was hard at school cause I would get paranoid if someone would bump into me. For almost a year I went and got blood work done everyday after school. My life as a 6 yr. old was pretty hard now that I look back at it. OK on to now.....

One morning, a few months ago, I woke up with tonsillitis... I had the absolute ugliest stuff on my tonsils... huge blood blisters, patches of white stuff, and to top that all of they were so swollen I could barely swallow, let alone talk. It hurt so bad. I described the pain like a knife going down my throat. I went to the Doctor's office twice in a 3 days and they gave me medicine for that and a sinus infection plus said I probably had mono.

That was a Friday and a Saturday that I went to the Dr's. Monday I woke up in so much pain. I was crying so my mom took me to the ER at 5 am. They gave me 2 shots in my rear end OUCH! of a steroid and penicillan. That helped a lot but on Wed. I had to go to my reg. Dr and get blood work done cause during this time I had "broken blood vessels" so I thought. I now know that it was petechiae or whatever they are called, all over my body. My mom was concerned about it being ITP and so was my Dr. cause he remembered my ITP from when I was little. So they ran blood test and found out that I had mono and my platelet count was 2,000. That is when they put me on prednisone and recommended we go to a hematologist.

I went to the hematologist and my counts were at 4,000 so she increased my pred. and said 'let's see if this helps', if not she would admit me into the hospital and give me the IVIg. Well.. they worked for less then a week and my platelets dropped back to 3,000 so she told me that she would admit me the next day.

I went to the hospital on Saturday morning and they gave me IVIG for the weekend and then I got to go home at 10:00 Sunday night. I woke up on Monday with a runny nose, but didn't think anything of it because I knew my immune system was down and figured I just caught one of my little brothers colds. I had friends over and we all hung out until I had to go and get more blood work done that afternoon. On the way to the Dr.'s I started feeling a little sick, but still thought it was nothing. We got to the doc's office and I sat in the waiting room forever and as I sat there I started getting worse and worse. Finally I got my blood taken and then I couldn't take it anymore I told my mom to get in the car and go home ASAP that I needed to lay down.

On the way home I developed the weirdest, worst headache I had ever had. I was like this continuous pain but I really can't even explain how it felt. I went home and got right into bed while my mom, freaking out, called the Dr. to see what we were supposed to do.

While I was in the hospital getting IVIg they had vaccinated me in case I have to get my spleen out. They told me to come back if I had any reactions at all. Well.. I must have fallen asleep. I don't remember. All I remember was opening my eyes and saying OH MY GOD I AM GOING TO GET SICK, but I didn't feel like I was. It was the weirdest thing. I sat up took one step away from my bed and threw up all over my room and all the way to the bathroom.

At this point the Doctor told my mom to get me to the ER NOW!! So we sped all the way there and they were waiting for me when I got there. They took my blood, hooked me up to IV , and did a cat scan on me. That was scary. I laid in the hallway of the ER for about 4 hours and then they decided to have a neurologist come in a do a spinal tap on me. That was scary cause I heard that they HURT real bad. Well I got through that one ok and then had to wait 2 HOURS, laying flat on my back! Some other Doctor came in and told me that there were 995 white cells, or some kind of cells, in my spinal fluid and I should only have 0-5.... BIG difference!! Then my protein in my fluid was up. So they vaccinated my family in case it was Meningitis. That is scary hearing that you might have that. It can be very dangerous. So they masked me up and admitted me. I was put in isolation and everyone that came in had to wear masks and all this protective stuff. It sucked.

They pumped me full of antibiotics through IV and the next day everything was going down and that was good cause that meant the test for meningitis was negative and I was out of isolation. Well, to make a LONG story, sorry it is so long you didn't want to know every detail.. While I was in there for 6 days I had another spinal tap, and a bone marrow biopsy.. boy did my back hurt!! Finally Saturday they let me go home and my platelets were at 202,000. During the next week they dropped down to 107. Now a few months later I am off all medication and was at 150K when I came off. Now about a month after that I am back down to 102K. I have a cold right now and I feel terrible.

I hope I didn't bore you with my life story, if you have any questions or tips please IM or e-mail me, I love to hear from people. Also you could get in touch with my mom, she has never been to this site, but I know that it might be nice to have other parents with children that have ITP to talk to.. You can reach her at ... TeLatte@aol.com

Heather FEATHEROO@aol.com

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