Idiopathic Thrombocytopenic Purpura (ITP)

Well, I wasn't planning to make another blog update until Cole was closer to 18 months but I feel this one has become sort of necessary. We have been asked so many questions about what has been going on with Cole that we thought a centralized location for the whole story would be the easiest way for people to find out.

Here is the story from the beginning.

7-11-14 Cole went in for his 12 month check up and they did blood work as per routine for this visit. Results: Normal on every test ran.

7-21-14 Cole woke up with a 102 fever over the next few days he had a runny nose and a bad cough. The doctor said that it was a viral infection. He was all better by the end of that week.

8-3-14 Afternoon: I noticed a large black and blue bruise on the top of Cole's foot and I had no explanation for it. I even tried to wash it off because I thought he might have gotten into something that colored his skin. (It wasn't washable).  Evening: I went to get him ready for bed and I realized that his shins were all bruised up too and I called in Josh to check it out too but we just brushed it off as a typical 13 month old.

8-5-14 I went home for lunch and saw that my little man had taken a spill and had a bruised forehead. The babysitter said he just tripped over his own feet and went face first into the hardwood. He has fallen like that before so this raised some flags for me too because it was so big and so quick to bruise.

I rocked him to sleep after we had lunch and thought I'd check his legs while he was still enough for me to bother him.

I knew then that there was something going on because his legs and feet had gotten worse over the last couple days. I took these pictures and sent them to my sisters and mom. They responded pretty quick that this was NOT normal 13 month old bruising. So I decided to call the Doctor. Cole's pediatrician was out of the office for the week so we saw the family doctor. She reassured me that I wasn't crazy for bringing my kid in for some bruises and told me that this was not the result of any kind of abuse. They wanted to check his blood for the blood clotting disorders and his platelet levels. So they took blood and when they tried to get a bandaid on blood spewed all over the nurse and all over the floor (not a good sign).

 

8-6-14 They called with his blood results and the blood clotting tests came back normal (not hemophelia) but they couldn't do the platelet test because a clot formed in the tube of blood and that skews results. At that point the nurse almost brushed the whole thing off and told me that I could come back in for another blood draw to test platelet levels but that his levels were fine at his 12 month appointment so those were probably fine or I could wait until his doctor was back in the office next week. I made a follow up appointment for Monday.

 

8-7-14 I did a little google research and found a blog from a mom with a child that had ITP. http://lifeyourway.net/the-hardest-month-of-my-life/ Her blog post described exactly what was going on with Cole. So I researched ITP http://www.mayoclinic.org/diseases-conditions/idiopathic-thrombocytopenic-purpura/basics/definition/con-20034239

 

8-8-14 Cole fell and busted his lip which bled for over 2 hours and it wasn't that serious of a fall. At this point I was glad we had an appointment for Monday and I just wanted to know his platelet count.

 

8-9-14 I noticed pinpoint-sized reddish-purple spots (petechiae) on his arms, legs and face. Another sign of ITP.

 

8-11-14 Monday: We took Cole to the doctor and he instantly mentioned ITP. Good thing I'd already done my research! They took blood and told us they would take it directly to the lab to be tested so it didn't clot and that they would call us today with the results. By the time we got to the car it was already after 4:00 so I figured that we wouldn't get a call until the morning. About 6:15 Monday night the Doctor himself called. You know it isn't good when you get a call from the doctor and not the nurse! He told me that Cole's platelets were at 9,000 (Normal levels are 150,000-450,000) and I was shocked! I was completely expecting them to say that he was around 40 or 50,000 and they would want to do a follow up next week but we were not that lucky. A lot of what the doctor said on the phone was a bit of a blur as I was trying to wrap my head around all of this. He started to tell me that he wished he could do treatment here but that they couldn't and I cut him off to tell him that I want to go to Children's Mercy. He said that for the last 40 minutes he had been on the phone with them giving them our information and that they wanted him up there as soon as possible for an IVIG treatment. 

[What happened to all of his platelets??? When he had the virus, the antibodies in his blood fought the sickness and once he was better they continued fighting and depleted his platelets. IVIG goes in and protects the platelets that he has left and should trigger the antibodies to quit fighting. Once the antibodies quit fighting, they can replenish themselves.] 

The doctor suggested we go ahead and get in the car and head up there and he would call us back with more information after he heard more from Children's Mercy. So we went home and packed an overnight bag and headed to KC. We were told that they were waiting for us and that was the truth! We checked into the hospital around 8pm and we were able to go directly to his room with all of his information already on all of the boards. We saw quite a few doctors and nurses when we first got there and they asked all kinds of questions and told us that bruising and low platelets are also a sign of Leukemia or cancer so they wanted to rerun his labs to double check before we moved forward. They said that ITP is a condition of exclusion, meaning that they exclude everything else that it could possibly be with blood work before they determine that it is ITP.  At about 10:00pm they started an IV and did a blood draw. 

This was fixing the IV 

By 11:00pm they were ready to start the IV but they couldn't get it to flush so they had to untape and unwrap everything to get back to the IV and they found it had come out partially and kinked. Praise Jesus they didn't have to redo the IV.

 

If you've never had to hold down a 13 month old for a blood draw or IV, then you could never imagine the sheer torture for the child and the parents but let me tell you... There is nothing worse that holding your child's face as he is looking at you with tears in his eyes and screaming with all of his might while there isn't anything you can say or do so that he would understand why it's happening. It took 5 people holding down parts of his body to run the IV. I can't even tell you how many times I've been told over the last 2 weeks that he is extremely strong for being so young but I already knew he was a tough kid!

 

 

Here are the blood tests that we got back. As you can see his platelets in his blood draw at Children's Mercy were 5,000 with a normal range of 150,000-450,000

 

 By midnight they were ready to try again with the IV and this time there weren't any problems. The highest risk for IVIG is an allergic reaction so they did premeds of Benadryl and Tylenol and they started the IVIG with an extremely low rate into this blood stream.

The first 30 minutes there was a nurse constantly looking over him, checking his pulse, looking for a rash, checking his blood pressure and his temperature. Then they bumped it up a little bit and checked every 15 minutes then bumped it up and checked every 30 minutes then bumped it up and checked every hour. I looked at the clock at 12:10am when they started the IVIG, I knew it was going to take 12 hours for this treatment to happen, I felt overwhelmed and prayed it would go fast! They even had an EpiPen right next to his bed in case he had a serious allergic reaction.

 

 

 

Cole fell asleep about 12:30am and I laid him down in the crib. There were 3 wires on his chest, one around his big toe, the IV in his arm, and a blood pressure cuff on his leg. Needless to say he didn't sleep to well and neither did mommy. Josh went to my dad's house in Gardner to get some sleep because there is barely enough room for one adult to sleep there let alone 2! Cole woke up around 7:00 and we ordered some breakfast and watched some cartoons.

Playing with the toys they brought him. This was the extent of his range. 

 

Then the doctors all came in his room and talked about his case and what they were doing for treatment and checked him over. There were literally 15 people in his room checking him out! He found one nurse to flirt with and gave her lots of smiles! He fell back to sleep from 9:30-11:00 and then finished treatment about noon.

 

At this point their concerns are that he would get some kind of internal bleeding because there aren't enough platelets to clot an injury. The most concerning would be a brain bleed from hitting his head so they measured him and gave him a neat padded helmet.

 

He hated the fact that he couldn't go more than 5 feet from the machines and all he wanted to do was run so the minute that they unhooked his IV and all of the wires, he ran around screaming with joy! We took him to the play room and he loved the cars in there! We were on the hematology/oncology floor so you can imagine the heartbreaking children that we saw while we were in there. By 2:00pm they had checked and rechecked his vitals and the doctor came in and said they were going to draw up his discharge papers.

I thought his discharge activity restriction was kinda funny for a 13 month old. No contact sports and no bike riding??? What will he do with all of his time??

 

We all walked out about 3:00 on Tuesday and came home exhausted.

We go back on Monday for a follow up. They will draw his blood and we are hoping that he has more platelets by then!

 

 

A HUGE thank you to everyone that has been praying for our Cole man! We received so many messages and phone calls from people that love Cole and were praying for him. Also thank you to our dear friend Beth (who has chronic ITP) for preparing me for what I was about to go through. Thank you to our Pastors for praying with us and being so comforting through everything. Thank you to our neighbor Mark who mowed our grass while we were in KC. Thank you to Josh's parents that brought us dinner Tuesday night so we could rest. Thank you to my friend Katy that works at Children's Mercy and came to see us after her shift was over Tuesday morning. Thank you to mine and Josh's bosses for being so incredibly understanding and supportive and picking up the slack while we were gone. A big thank you to all of my family and Josh's family for being so loving. Thank you to everyone that offered help, we appreciated every kind word sent our way! A big thank you to Cole's pediatrician and the Doctors and nurses at Children's Mercy for taking such good care of our little boy. Thanks be to God for keeping us calm and collected and for keeping our little man in the palm of His hand through all of it.