Childhood ITP – My son’s story 2 months on

4 Sep

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This month is ITP awareness month, so I felt it would be a good time to provide an update of how my son has progressed since he first contracted childhood ITP following his MMR booster jab.

He was initially diagnosed with acute ITP after a 3 day stay in hospital. You can read about those first 3 days here.

Once released, we began a period of ongoing care. The first few weeks were the worst. His eyeball was still bloody from the original hemorrhage, his ITP rash remained all over, and he bruised without cause.

He left hospital 1 day after his immunoglobulin transfusion, by which time his platelet count had risen from 4 to 23. Being over 20 was a partial relief, because patients are at most risk of spontaneous bleeding in the brain, mouth, nose, gut etc when platelet count is below this. However, with a count under 50 he would still be at risk of complications from minor injuries, so we needed to watch him like a hawk to ensure he didn’t trip, fall, hit his head…. basically everything you expect of a 3 year old boy.

We were also required to return to hospital just a day later for another blood test to check his platelet count.

That first day home was nerve wracking. Oscar felt quite well (despite lethargy and a short temper), and understandably wanted to play outside with the other children. I was petrified and had him in a bicycle helmet permanently for fear of a head injury. Sounds ridiculous, but I was all too aware that the slightest bump to the head could spark a complication.

On this first day, I contacted Oscar’s school. I had read from the ITP website that children could go back to school once their platelets had risen above 20, or a week after the initial diagnosis, providing the school could offer a little extra supervision in the playground and prevent him from doing some of the more dangerous activities such as jumping from heights, contact sports and perhaps anything involving concrete.

However, when I spoke to the headmistress, I was disappointed to hear her request that he remain off sick for a full 3 months, or until such time as his condition was totally resolved. She suggested that as it was nearing the end of term, the children “weren’t really learning anything” and were just having fun. I refused to accept this offer. Why should my child miss out on all the fun because they don’t want to support him? So I recommended she ask her medical office to send off for the school pack from the ITP Support Association.

Fortunately, the medical officer was significantly more sympathetic, as were the pre-school teachers, and it was agreed that Oscar could return to school the next week.

The following day, we returned to hospital for his repeat blood test. Oscar wasn’t very happy to cooperate, but the results showed that his platelet count had rocketed from 23 to 91 in just one day. We were jubilant. The transfusion was mopping up all the antibodies in his blood allowing his bone marrow a chance to replenish his platelets and we could breathe a temporary sigh of relief as the risk of spontaneous or unstoppable bleeding was now fading.

The weekend passed, and the following Monday we were back in clinic for another blood test. The results were astounding. A platelet count of 149. Just 1 under normal level. Brilliant we thought. The transfusion had temporarily resolved the issue, now we just had to hope that his own body would correct it’s mistake before the effects of the transfusion wore off. A return visit was scheduled for a fortnight later, and until then we could assume a relatively normal life and Oscar could take part in his school sports day.

Sadly, just the day before his routine clinic and blood test, I noticed the tell tale bruises creeping back on his arms, legs and body, and a few of the petechia (rash spots) appearing, at which point I feared the worst. I spent that day following Oscar about like a bad smell, and preventing the poor mite from running, jumping, climbing, in short anything that a normal child wants to do of a weekend. My constant pestering wasn’t effective, because in the briefest of moments, he escaped me to chase his friend, and in slow motion, right before my eyes, he tripped over a wonky brick, flew into the air and landed face and arms first onto the hard surface below along with his friend.

For just a second my heart stopped. My mouth fell open and fear took hold. I ran, really ran, as fast as my legs could carry me, screaming my sons name. He was still lying face down on the floor, crying and in shock. I stood before him and for a moment I faced a dilemma. I wanted to grab him immediately but didn’t want to appear callous and uncaring to the other child. So I picked his friend off the floor, passed her to her parents and scooped Oscar up and frantically began inspecting every inch of his body. His arm was badly grazed, and his hands and knees were scratched with gravel. Ordinarily I am fairly unmoved by bumps and scrapes, but with the outward signs of low platelets visible, I was gripped with fear.

At his checkup the following day it was confirmed that his platelets had sunk back down to 49. Not a dangerous count, but I was bitterly disappointed.

Over the following 4 weeks we made regular trips back to clinic to have repeat blood tests, urine dips and inspections for bruising, rash and other significant markers.

Fortunately as time went on, Oscar became more and more cooperative in giving blood. In fact, I might argue he is better than most adults, but that may be due to the multiple new lego vehicles he has negotiated in exchange for every blood test.

Gradually, his platelets began to creep up, 69, 79 and eventually on 19th August, my birthday, 92. At this point, it was agreed that his condition was stabilising and his clinic appointments were reduced in frequency. His next blood test isn’t due until 30th September.

Sadly, just this week, he developed a fever without any obvious cause. Unlike a normal child, a fever in an ITP sufferer presented me with specific issues:
1) Ibruprofen is not compatible with the condition, so calpol is your only weapon, which in this instance, was not having much effect
2) If the antibodies in his blood were raised to fight an infection, would his platelet count reduce again?

I had read a blog about a chronic ITP sufferer whose platelets drop down to single figures every time she gets sick, so I was concerned enough to contact the hospital.

The only positive benefit to having a child with ITP is the priority hospital pass you receive, which provides immediate access to a paediatrician when presenting in A&E. And on this occasion, I intended to use it to my advantage.

Oscar was admitted to hospital immediately and monitored for meningitis and provided with a blood test and antibiotics.

The full blood count showed platelets down to 83. Not a significant decrease, but a disappointing knock back to his progress and who knows whether it will drop further whilst he continues to fight this virus/infection?

A worrying issue just a week before he starts school.

Once he returned home, Oscar’s fever persisted for another day, but has now begun to subside.

At this time, I am awaiting confirmation from the consultant of whether Oscar’s repeat test should be brought forward from 30th September to see how his platelets have been affected by this current illness.

For his sake, I pray they have been relatively unharmed and that his recovery back to a normal platelet count will continue without hiccup.

I’m not sure my nerves could take a knock back.

To be continued……..

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5 Responses to “Childhood ITP – My son’s story 2 months on”

  1. Kay C September 5, 2013 at 8:06 am #

    We have everything crossed for you all and hope he will be able to start ‘big’ school as planned, sending you all lots of love and we are thinking of you xx

  2. megan September 9, 2013 at 2:14 pm #

    I really feel for you and your son. I completely understand with the constant following around of your child, fearing that they are always going to hurt themselves. I hope at your next blood test his platelet levels have risen. My little boys platelet levels were also at 4 a few months ago on his first birthday, but within 6 weeks had risen to 160. I still panic now when I see a bruise.

    • ferreroroche123 September 9, 2013 at 2:18 pm #

      I am so glad to hear your son is recovered, and hope my son too is improved at his next appointment.

  3. Victoria Welton September 10, 2013 at 10:57 pm #

    Bless you, what a really scary time for you. You must be constantly on edge, and understandably so too! Give Oscara hug for me (I love that name) Thanks for linking to PoCoLo x

  4. Victoria Welton September 10, 2013 at 10:57 pm #

    *Oscar !!!

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