MMR Risks: A true story

9 Jul

I’ll level with you straight up, I’m a woman on the edge. This year has tested my strength and patience to the absolute limit and unless we start to see some serious good fortune pretty bloody quick I may just snap.

So what now? What could possibly be troubling me after a week of slush puppies and splash pools in the sun?

Well I’ll tell you what. I’ll tell you precisely what.

3 days after we returned from that very holiday, our world got turned up side down all over again in a big way.

It started with my son’s MMR booster jab a week before we flew out to Majorca. Being a smart cookie I decided it would be belt and braces to organise his shot before we went abroad. In his daily routine, the risk of interacting with a measles infected human is slim. We’re a long way from Wales, in fact his nursery kiddie winkles only stretch about as far as the end of the road, and Ruislip borne illnesses ain’t exactly exotic.

But bound for one of these all inclusive Holiday Villages, I knew we would be exposed to people from all over the UK and beyond and thought it clever to get him dosed up.

He went to the doctors for his appointment, had the vaccination, was kept in the surgery for about 15 minutes in case of an immediate allergic reaction, and was released soon after with the usual advice about fevers.

We watched him diligently over the next week in case his temperature spiked, but he remained unafflicted….. So far so good.

We also managed our week away without any complications or side effects and Oscar returned home in good health. We were home free right?

Wrong.

On Sunday morning, as we were preparing to go for our pre-planned trip to Legoland, I noticed the boy had a slightly red eye and a small purple-ish rash on his wrist. Thinking it might be hay fever, I plied him with Piriton and googled MMR side effects just as a hunch. The NHS website mentioned a rash caused by MMR induced ITP, but offered no explanation of the consequences of such a rash so I headed off for our day out relatively unconcerned, but vowing to keep a watch.

Whilst out, he was a grumpy, short tempered little swine, but since he had been pretty beastly since returning from holiday, I just gritted my teeth and vowed never to go abroad again.

We returned home for dinner, which Oscar inhaled enthusiastically, and he trotted off into the kitchen to help daddy with something inconsequential.

2 minutes later he appeared in the living room to talk to me and I noticed his “slightly red eye” was now bleeding from the eyeball. Shocked, but assuming an accident, I quizzed Oscar about what he had done and whether it hurt. But each query provoked a flat denial of any incident. Not believing a word of it, I checked with my husband who also insisted there had been no mishap.

Feeling pretty worried, I started to check his body for the rash, and noticed it had now spread to his armpit, his groin, both arms, his legs, back, tummy, bum, ear, under his eye, and even his willy. The rash didn’t Blanche under pressure, but since Oscar was so well, I did not panic.

I phoned 111 hoping they would reassure me, but instead they sent an on call doctor out to check him within 2 hours.

After a thorough examination, and a urine dip, showing a trace of blood in his sample, the doctor phoned the paediatrician at the hospital who insisted we come in for a blood test. The doctor mentioned ITP, but again I was unphased, thinking it was just a rash.

When we arrived at A&E, Oscar was seen promptly by a peadiatric doctor who also noted the presence of a rash on the hard palate of his mouth and went to get a second opinion. The second peadiatric doctor confirmed that they were suspecting MMR induced ITP and asked to take his blood to test his platelet levels and rule out meningitis.

Sadly Oscar was not cooperative in having his blood taken and put up a struggle. His screaming and thrashing violent enough to provoke a second bleed from his eyeball, and a widespread rash on his face.

image

At this point I started to freak.

The doctors provided me with a printed fact sheet on ITP and it was then that I understood that the rash and the bleeding eyeball was probably a result of his body attacking his own platelets, and that his blood was therefore not clotting and was rising to the surface through his skin and eye.

After just a few hours wait, the blood tests confirmed that Oscar’s platelet count was low. Really low. Just 4, compared to a normal count of 150-400. Because of the severity of the reduction and the small trace of blood in his pee, the doctors asked to admit him into hospital for the night to be observed, and so that the haematologists could look at his blood under a microscope tomorrow to rule out leukaemia. At this point I really started to freak.

Oscar’s observations overnight were unremarkable. In the morning, the consultants came to see him and repeated what would be happening that day. If ITP was confirmed, he would be sent home that evening with information on what to look out for, and a fast pass to peadiatrics should we see further evidence of rash, bleeding or should he have any bump that needs checking.

So we waited, and waited. By 3.30pm, the blood results were back, and ITP was 99.9% confirmed. But because his platelets were so low and he had blood in his urine, the hospital was to consult with Great Ormond Street about treatment before discharging him.

Several hours and discussions later, the consultant confirmed that Great Ormond Street recommended an Immunoglobulin transfusion to mop up the antibodies that were destroying Oscar’s platelets. It would only be a short term fix, but it would buy his own body time to rectify itself, and reduce the danger of him spontaneously bleeding.

The hospital were keen to point out that this was a very expensive treatment and they would not normally do it….. Yeah, well he’s worth it.

So, we were to remain in hospital for another night while they administered the transfusion, and observed the boy for any allergic reaction.

It was a hellish and exhausting night. For 9 hours the transfusion machine beeped, and groaned, the alarm sounded endlessly, and Oscar tired and grouchy, tossed and turned and repeatedly tried to pull the transfusion line out of his hand.

But by morning it was complete, and he was looking relatively spritely when he awoke.

The consultants were due round at about 9.30am, when he would be approved for discharge, and we could go home and relax.

Only it didn’t work out like that.

Since Oscar was getting a wee bit stir crazy cooped up in the ward, we decided to take him on a walk round the hospital to see the ambulances. He was off his breakfast and a bit crabby, but we thought the change of scenery would do him good.

So off we trotted, telling the nurses we would be back for the consultants rounds.

As we exited the ward, Oscar, being his usual clumsy self, ever so lightly bumped his head on the door. No panic, he would be fine.

Almost immediately afterwards, he started complaining of achy legs and wanted to be carried. Lazy oik.

He continued to be lazy and whiny, but his mood was buoyed when he saw the ambulances, so much so, he started to skip and run for the briefest of moments.

Mid skip he stopped, clasped his legs and howled that his back and legs hurt, then he grasped his head and moaned that it hurt.

We returned to the ward, disappointed, but convinced it was a likely side effect of the transfusion.

Once back on the ward, he cowered in his bed, pale and drowsy, drifting in and out of consciousness and only really rising to complain of tummy ache and head ache. The consultants gathered around the bed, expecting to see the mischievous monkey that had been dominating the ward for the past two days, and expecting to discharge him home.

When they saw him their faces dropped.

They once again examined his body all over, making note of multiple new bruises and rash spots in various places. Whereas before, Oscar had enjoyed the attention, cheekily playing with the doctor’s equipment and revelling in showing them the spots on his nether regions, today he was uncooperative, unresponsive, and only awoke to groan, thrash about uncomfortably and complain that his head hurt.

The lead consultant confirmed that Oscar’s demeanour has markedly changed, that his colour was poor and that she was worried and not in any position to discharge him until he improved. She questioned us about the bump to his head, and stated that she was concerned it may have caused a bleed to his brain. Within minutes, there were doctors and nurses around the bed fitting a new cannula, taking tubes and tubes of blood, and urgent discussions with Radiology to book an emergency CT scan.

All the while, Oscar remained unconscious, only waking to projectile vomit twice, and to scream that his head hurt.

image

After a short while, we were moved to a private bedroom and my mum arrived to see the little man.

Looking at him, she was upset and worried. My husband and I were terrified. Seeing the doctors and nurses so concerned scared us deeply, and having lost one child already this year, all I could do was beg the consultant not to lose the other.

Oscar was put on a drip and remained unconscious for about 5 hours.

I thank God that he woke up just before his CT scan, just in time to call everyone around him a “poo poo”, and to refuse to climb into the big doughnut.

He made a full recovery and was discharged after another night in hospital under observation, but is now required to visit the outpatient clinic weekly for blood tests until his body figures out it has made a mistake and stops destroying his platelets.

It could take 3 weeks, 3 months or last a lifetime, although 3 months is the norm for a young child.

Until then, my husband, my childminders, Oscar’s school and I must watch out for bleeding gums, nose, eyeballs, major bruising, spreading rash and limit his activity to prevent any minor accidents that could provoke a more serious bleed. Hard to do with a 3 year old who is prone to minor knocks and bumps everyday and often uses his head as some sort of “bumper” equipment to guide him through doors when he’s not looking.

Between my husband and I, we must somehow arrange to take weekly time out of work to attend hospital appointments until he is totally recovered, and remain available to rush him to hospital at a moments notice should he have an accident.

So would I give my child the MMR again? I’d have to seriously think about it.

Am I suggesting you don’t give your child the MMR? No. I am not a doctor, and that is your choice.

But I hope that you will read my story and make yourself aware of ITP, a medically acknowledged but little mentioned possible side effect of the MMR jab, so that you know what to look out for should you choose to vaccinate your child.

Statistics show that only 1 in 24,000 children experience ITP after the MMR, but when that 1 in 24,000 is your child, it’s one too many.

I pray my son makes a full recovery very soon, he’s my world, and my little fighter, and is making good progress right now.

But please fate, enough now….. I need a break.

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17 Responses to “MMR Risks: A true story”

  1. Aly July 10, 2013 at 12:02 pm #

    I’ve never even heard of ITP! Bleeding from the EYEBALLS? Holy fuck. Was this his booster MMR?

    • ferreroroche123 July 21, 2013 at 10:04 pm #

      Yes it was. Had no reaction to the first.

      • charlotte luckhurst September 5, 2013 at 2:40 pm #

        thanks so much for sharing your story. my son also suffered from itp last year, however not from any jab he had a fall and cut his gums which unbeknown to us caused and infection. the first we knew was when he fell at my sisters wedding and bled from his mouth for over 7 hours. I fully understand your ‘woman on the edge’ comment, I had suffered a miscarriage a few months before and was pregnant again and already a nervous wreck, the itp with my son almost tipped me over. he did make a full recovery, avoiding any major bumps, thank goodness and just 3 ‘short’ months later he was signed of completely, just in time for Christmas. the raise in his levels were as sudden as the disease developing. fingers crossed your little man recovers just as quickly

      • ferreroroche123 September 5, 2013 at 2:53 pm #

        Thank you very much for reading our story, and thanks for the hope that my son may recover as yours did.

  2. Anthony Heard September 5, 2013 at 2:05 pm #

    I can feel your anxiety and worry Nicola as I read your account of your son`s reaction to the MMR jab. Like me his platelet count fell to 4 when he was diagnosed, albeit I was 46 years old on diagnosis and the medical experts have no idea why I developed ITP. I can fully appreciate how worrying the entire episode has been for you, Oscar and your whole family. Hopefully by having great writing like yours on blogs like this and sharing it on our Facebook and social media pages at the ITP Support association , it can educate and in some way re-assure people about ITP. Thank you for sharing.

    • ferreroroche123 September 5, 2013 at 2:24 pm #

      Thanks Anthony, I worry about him every day, but am hopeful that his condition will not become chronic as he is young.

      I am sorry that you are still living with this condition, but thank you for all of the information the ITP Support Association provides, it was immensely valuable in educating his school and understanding as a parent, what I could do to keep him safe.

      Kind regards
      Nikki

  3. Brandi September 5, 2013 at 2:22 pm #

    My son developed ITP after being exposed to a stomach bug. This was in January 2012, he was 4 1/2 years old. It is now September 2013, he is 6, and still has ITP. It sounds like your son had the horrible headache that you can sometimes get from IVIG. Ryan has had IVIG 6 times.

    Your story brought back so many memories. I remember my husband and I leaving my 1 week old son and 9 year old son with my mom and rushing my 4 yr old son to Johns Hopkins, being admitted for days… not knowing a thing about ITP but just so thankful it wasn’t cancer.

    I haven’t read your newest entry yet, I just found this link from the PDSA facebook page. But if your son ends up having it for an extended length of time, I can tell you that it will get easier. You’ll still have the ups and downs, ITP is one heck of a roller coaster.

    I hope your little guy gets better soon!

    • ferreroroche123 September 5, 2013 at 2:26 pm #

      I am sorry to hear that your son still suffers, but am glad to hear it does get easier.

      I hope my son will recover, but expect it will take some time longer for my anxiety over bleeding to go away.

      Many thanks for your comments.

  4. Sheree Winger November 25, 2013 at 9:56 am #

    I have a really similar story. My son was also diagnosed with ITP following the MMR vaccine. He participated in a research study to see if there could be a genetic link. The crazy thing is he and your son look like brothers, though Miles is 8 now.

    • ferreroroche123 November 25, 2013 at 7:58 pm #

      Thanks, is your son recovered now? Luckily my son has today received the news that his platelets have returned to normal. I hope it never returns.

  5. mamaknowsbest March 1, 2014 at 5:49 am #

    I found your website while I was looking for information about MMR boosters after ITP. My daughter got ITP after her first 12th month MMR vaccine. Like one of the commenters wrote upthread, she also participated in the, I believe same research about ITP and a genetic link (we gave them a sample of her saliva). She was fine after her IVIg treatment and has been fine so far. She is 5 now and due for her MMR booster, but we are not sure whether we want it or not. We also didn’t get her booster for Varicella, another vaccination with “live” virus (because of ITP), and she is due for that one as well. We are still thinking, but we will probably skip the boosters for these 2.

    My son also got a rare “side effect” to rotavirus infection; he had afebrile seizure (he actually had 3 of them). He was also 12 mo at the time, but unlike my daughter, he was not yet immunized for it. He got rota infection again when he was 2, and he again had to be hospitalized (he was extremely dehydrated this time). My daughter also had rota, but she was fine since she was vaccinated for it. So, we had 2 rare, unfortunate events, one, because of vaccination and another because of non-vaccination! Such luck!!

    I hope your son is healthy now.

  6. charlotte March 2, 2014 at 9:42 pm #

    hi, I have just seen your last comment that your sons platelet levels returned to normal, I hope this has stayed the case. if so I am so pleased he is fully recovered and that your little boy can now enjoy all the fun things little lads should be getting up to without fear of health problem xx

    • ferreroroche123 March 2, 2014 at 9:47 pm #

      Yes they did thank you. At least we think they have. He no longer has blood tests so we can’t be sure, but he no longer bruises or has the rash spots so we have not seen any evidence to suggest it has returned. We are so happy that that worrying period is over and daddy enjoys frequent tickling sessions with his boy.

  7. charlotte March 2, 2014 at 10:36 pm #

    that is so amazing hun, am so pleased for all your family. its been nearly a year and a half since my son was signed off and thankfully we have never even had cause to worry it may be back. 🙂 xx

    • Sheree August 14, 2014 at 7:49 pm #

      Yes my son Miles is fully recovered and it has been over 7 years. He is almost nine. It was rough for a couple months, and we worried about him. His uncle got chronic ITP at 18 years and it has been a lot of drugs and unwanted side effects, hospitalizations, etc so we were nervous about it. But fortunately it was best case scenario for us and he fully recovered.

  8. Emma April 5, 2015 at 8:54 pm #

    My son suffered from this horrible condition after his mmr. I hope he’s better now. Jake is better now but I never want him to go through anything like that again. It was my worst nightmare. His levels were at 1. He was never given a transplant. Just told he can’t bang his head because he could bleed in the brain. He had only just started walking so that was going to be difficult.

    • ferreroroche123 April 5, 2015 at 9:21 pm #

      Gosh, how terrifying. I hope his levels increased quickly. Glad he is better now. My son has recovered, but only today we were checking him over again as we noticed a few purple dots on his eyes and body. I don’t think I will ever fully relax. I will always be watching for signs of his platelets dipping.

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