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My Experience with Acute Childhood I.T.P.

How I dealt with my daughter’s acute I.T.P. (Immune or Idiopathic Thrombocytopenic Purpura)

While many people have never heard of ITP, Immune or Idiopathic Thrombocytopenic Purpura, approximately 200,000 people in the U.S. suffer from the disease. ITP is an autoimmune disease that affects all age groups. And the cases are increasing- there are 20,000 new cases each year (“About ITP”). The scariest aspect of this odd disease is that the trigger is usually a mild illness, such as the common cold or vaccinations (“FAQ-ITP in Children”). I had never even heard of ITP until I my seven-year-old daughter exhibited the strange symptoms.

One morning my daughter said she felt a lump inside her cheek. I looked inside her mouth and saw a quarter-sized black lump. I asked her if she had been chewing on any pens. Then my husband suggested that maybe she bit her cheek during the night. We sent her to school and thought nothing of it. During the day the lump popped and her mouth was filled with blood. She rinsed her mouth out with cold water, and again went on with her day. She felt fine.

The next morning she woke up with two more lumps on the other inside cheek. I panicked, thinking, “Oh my God, they’re multiplying.” Then I noticed blood was floating in the white of her eyes. We immediately brought her to the pediatrician. When removing her pajamas to help her get ready, I noticed petechiae (pronounced pe-TEEK-ee-ay), bluish-red spots the size of freckles, covering her body. We raced to the doctor, trying to hide our anxiety from my daughter, who still was feeling great.

In the office, I let out some of my fear by joking with the doctor, “You have to help me. My daughter is exploding!”

He examined her, noticed even more bruises on her body, took blood, and said he would run some tests. For a brief moment I wondered if he thought we abused her since she looked like she had been through a traumatic accident. But when he returned, he explained that she had ITP. Her platelet count was 20,000. Normal platelet count ranges between 150,000 – 450,000 per micro liter of blood (“FAQ-ITP in Children”). He said if her white count had also been low, that would have been a sign of leukemia; however, since her white count was fine, he believed it was ITP.

I felt my breath escaping in slower and slower intervals. Since he was comparing ITP and leukemia, ITP suddenly became more serious to me. He tried to calm our nerves by explaining that ITP is not fatal, and that 80-90% of all cases are acute, meaning they last one to three months and then the patient recovers completely (“FAQ-ITP in Children”). Usually the older the patient, the more chance it will lead to chronic ITP.

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  1. Thanks for reading my article. This happened to my daughter four years ago, and thankfully she has been fine ever since.

  2. Sorry, one last note: I have no evidence, other than mother’s instinct, but coincidentally my daughter developed I.T.P. directly after giving her Children’s Motrin (ibuprofen) for the first time rather than Tylenol (acetaminophen). I mentioned it to the doctors, but they all ignored me. I personally will never give her ibuprofen again. If anyone else had a similar experience with I.T.P. and Motrin, please comment here.

  3. HI, YES MY SON TOO DEVELOPED I.T.P. ABOUT 2 MONTHS AGO. HE HAD STREP THROAT AND I WAS GIVING HIM MOTRIN(HE WENT THROUGH ABOUT HALF A BOTTLE IN 3 DAYS) AND A WEEK LATER HE HAD ALL THE SIGNS OF I.T.P…BLOOD BLISTERS IN THE MOUTH, BRUISING, AND PIN-POINT DOTS ALL OVER. I WAS TOLD BY THE DOCTORS THAT HE CANNOT TAKE CERTAIN MEDS WHILE HAVING I.T.P., MOTRIN WAS ONE OF THEM BECAUSE IT MESSES WITH YOUR PLATELETS. THEN I HAD REALIZED THAT WAS WHAT HE HAD TAKEN WHILE HE WAS SICK. I REALLY DO THINK THAT THIS HAD SOMETHING TO DO WITH HIM GETTING THIS. THE DOCTORS SAY IT WAS PROBABLY FROM THE STREP BUT JUST TO BE SAFE,I THREW THE REST OUT AND ALSO WILL NO LONGER GIVE MY CHILDREN MOTRIN. MY SON IS STILL GOING THROUGH THIS, BUT WE JUST GOT REALLY GOOD RESULTS A FEW DAYS AGO…122,000 WAS HIS COUNT. :) THE HIGHEST THEY HAVE BEEN SINCE HE GOT SICK. THANK YOU SO MUCH FOR TELLING YOUR STORY. KNOWLEDGE IS THE BEST WAY TO GET THROUGH THIS WITHOUT GOING CRAZY AND FEELING HELPLESS. THANKS AGAIN, JAMI

  4. Thanks for posting that story, more parents should do the same. My daughter at the age of 15, 5 months ago was diagonsed with ITP. Her count was at 1,000. She went 2 rounds with WinRho, and a month of prednison. Her counts were up and down. 3 weels ago we got the good news that she was back up to 234,000. I never thought that a number could sound so good. Now, here we are 3 weeks later and Cassie has come down with a nasty cold, sure enough here we are with her numbers falling like there is no tomarrow. She is at 70,000 2 days ago. SO sick, fever is up and there is no meds that we can give her at the moment to make her feel better. So hopefully she feels better tomarrow and Im just keeping my figured crossed at her next blood test in a few days. Round 3 with ITP.

  5. Thank you for your story and everyone’s comments it makes me feel so much better who have been where we are. My 3yr old just got diagnosed with ITP yesterday. I guess it was just mothers intuition that made me take him in to the doc cause we all know that toddlers fall and get bruises But his looked funny to me and there were so many. I agree that there is nothing scary then when the doctor says the low count gives them cause for concern that he may have lukemia I broke down right then and there. His count was at 4,000. I was relieved to hear it was ITP. Yes its still scary and i havent taken my eyes off him since leaving Texas Childrens at 5 this morning but I can handle this and we are very hopefull its not Cronic since there is only bout a 10-15% it would be the odds are in our favor. We had a 4hr drip in his IV last night and they will test him on Tuesday and then go from there. So here’s hoping and praying the numbers show some increase.

  6. My son is 6 he had some bruising on his legs we ignored them assuming boys will be boys and it was from rough housing and play…. Then a large bruise appeared on his arm it was nasty so we took him to his doctor. Like some of the other mothers on here I was afraid they would think we beat him with the amount of bruises he had gotten. In fact I knew it didnt occur at home and conferenced with his principal and teachers trying to find out how he got it. It was very troubling since he would change his story of how he’d gotten the bruise ….. it seemed he had no real idea of how he got it and it was so severe I didnt understand how he didnt know where it came from. When we left the doc we went for bloodwork. Before we even left the hospital parking lot (in midland) they told us to drive to covenant in saginaw. Once they tested his blood again his platelets were 1,000. We then took a ambulance to Detroits Childrens Hospital. The team of doctors examined him and took blood. When the results came back they said it was ITP. They gave him IVIG to correct his body from destroying his platelets. This all happened Friday afternoon. He finished his treatment 6 hrs later and he started having severe headaches that would overcome him with fever causing him to vomitt. Its Sunday now they sent us home blood results are at 88,000 platelets and doc said fever with vomitting and headache may happen for up to 48 hrs. We have to protect him like he’s glass and return to Detroit Friday for follow up bloodwork. Tonight he cries telling me the pain was too much I feel helpless and all I can do is cuddle him and give him tylenol. While at his family doc he was also diagnosed with strep throat which amoxicillin script was given. Our doc in Detroit says its normal after treatment for the platelet count to drop again so were expecting that for Friday. It’s comforting reading these stories knowing were not alone fighting this. I hope to post good news eventually but doc says for 6-12 mnths we have to be careful. My prayers go out for each of you.

  7. Thanks all of u for posting ur comments, my prayers are with all the mothers as I am the one who had recently suffered from this also. It was a tough time though it has gone, but left it with still reasons unknown. But after reading this, I m feeling much better and I thank all of u from the core of my heart to share your experiences as it gives us the knowledge about this disease which is not that common and we as a layman never heard it in our usual lives unless and until we go through.

    I live in Bahrain. My son is 2 years 7 month old. Suddenly he got gum bleeding and petiache happens on his face. We got concerned and immediately took him to our local doctor. He suggested to go to the biggest govt. hospital here which is Salmaniya. Then after doing his CBC, they told us that his platellets are really low as 2000 which in a normal human is 150 – 440,000. So they immediately admit him. IVIG was given twice for 12 hours each.now after doing 6 CBC test, the platellets have come in normal. with God grace, it will be better in the coming days too. please pray and I wish all of the mothers all the best too. God bless us all and keep us away from these evils

  8. Thank you so much for posting your story, my son just recently got diagnosed with this. he is 2 years 10 months old, he was quite the trooper through the 12 hour infusion that the doctors recommended and we will have to have weekly lab draws for apporox a month before our follow up with the hematologist. his platelet count prior to discharge was 36,000 so i am hopeful that they are continuing to rise as his bruising looks much much better.

  9. Ive just returned home from a week in the hospital with my 13 month old baby who was diagnosed with ITP. It started as most of you said…brusises, nose bleeds, sore on the tongue…was going to take her just to urgent care until I changed her diaper and there was blood in her stool. Her inital count was 3000. They did a round of Win Roh and her counts went to 5000 for two days…then dropped back to 3000. They didn’t want to do another round of WinRoh because she had become anemic. We made the decision to do the IVIG and for three days they were unable to get an IV in my baby….all her veins were shot from blood draws and IVs….it was awful. Yesterday my baby was released from the hostipal with a count of 20000. we go tomorrow for a blood check…fingers crossed we continue to be home…if they go down we are back at the hospital;( this week has been surreal….

  10. The same happened with my nephew. He had a circumcision when 1 y 7 m old and he was administered ibuprofen. he developed ITP in 3 weeks time after that.
    he was under medication for 2 years. by May 2010 his counts were 240000 and medication was stopped. by mid december 2010 the weather turned very cold and he has been bleeding from his nose on and off. his count is now 100000.

  11. Hello all,

    As author of the original article, I am so glad others have written their stories as well. My daughter is now 14 and healthy (Thank God!). To this day, she believes she is allergic to aspirin and ibuprofen, so she will only take Tylenol for fevers.

    I really wish the medical community would look into a link between ITP cases and children taking ibuprofen for the first time. The only time my daughter ever took Motrin was the day before she came down with ITP.

    Keep the posts coming. Share your story.

    -Kristy Acevedo

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