Emotional Ramblings

Do you know what HSP is?

What a week it has been!

Last Saturday, I worked 7am – 11am and when I got home Alfie was fast asleep in bed. This never happens – not only does he not nap in the day anymore, he has never napped in his bed! When he woke around 12.45 he had a temperature of 39 degrees and wasn’t himself at all. We gave him some calpol, which did the trick and he was fine for a few hours, until his temperature went up again at bed time.

The following day, I got home from my friends baby shower and as soon as I walked in, Michael told me he thought Alfie could have chicken pox. Whilst I’d been out, Michael had noticed a rash on Alfie’s legs when they were at his mum’s and as it was a Sunday and the doctors was closed, they decided to take him to the chemist so a pharmacist could have a look at it. The pharmacist determined that it did look like chicken pox and gave him some piriton and advised to keep Alfie away from me as much as possible with me being pregnant (I’m not sure if I’ve had chicken pox and my Mum can’t remember if it was chicken pox or measles that I had when I was younger). Michael mentioned that Alfie’s already had chicken pox twice before and asked if he could get it a third time and was told there is a 1/1000 chance he could have it a third time. During the rest of the evening, the rash got worse and seemed to change as it looked less like chicken pox as the hours were passing. I made the decision that we should take him to the doctors the next day, just to be certain. It was quite a tense evening as we were obviously quite worried about the implications that it could have on me and the baby if it was to be chicken pox. I had to tell Michael not to look on google at the risks as he’s such a worrier!

 

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Day three of the rash.

I’m very fortunate that my sister works at my doctors surgery and that they also give priority appointments to under fives. As I wasn’t sure if I’d had chicken pox, I spoke to my sister, who said that if I go with Alfie, then she will speak to the triage nurse and I should be able to have a blood test to check if I’m immune if it is chicken pox. We managed to get him in the first appointment on Monday morning and as soon as the doctor saw him, she determined that it wasn’t chicken pox (which I was so relieved about) and it was in fact a virus called Henoch-Schonlein purpura (HSP) which is basically a disease involving inflammation of small blood vessels. The inflammation causes blood vessels in the skin, intestines, kidneys, and joints to start leaking. You can read more about it here . She asked us if he’d had any joint pain, or any sickness and diarrhea. I told her that on Friday, he had said that he had hip ache and on Saturday he’d mentioned that his knees and ankles were aching. We’d thought nothing of it at the time, but this is actually one of the symptoms. The doctor made the decision to refer him to hospital straight away  for further tests and rang through whilst we were still there. To look at him, you would never know there was anything wrong as he was sat in the doctors surgery playing with his cars and was very well in himself, which the doctor noted.

We were told we needed to take a urine sample with us, so nipped home to do this first, in case Alfie wouldn’t go when we got there – we figured it’d be easier for him to do it in the comfort of his home in his potty, rather than once we were at hospital.

After we’d arrived and found the correct ward, we went into a lovely waiting room where there was lots of toys for Alfie to play with. He loved having some new toys to play with and as we were the only ones in there, he had them all to himself for quite a while.

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He loved playing with this toy garage as he’d taken one of his cars with him. It was only when I looked         back on this picture that I realised how much he’s grown up recently.

The first assistant pediatrician called us and did his blood pressure, whilst giving me and Michael lots of info about what HSP actually is. She reassured us that he would be ok, and it was nothing too serious. After she’d done his blood pressure, she put some numbing cream on both of his hands and we were sent back to the play room for an hour whilst the cream numbed his hands. Just before the hour was up, we were called by another doctor who took us on to an empty ward to have a look over him. He also determined that it was HSP. Once this doctor had finished checking him over, we went through to another consultant room where there was two nurses and a play worker, ready to distract Alfie whilst he was having his blood test. The nurses and play worker were absolutely fantastic and not only put Alfie at ease, but also me. It’s horrible seeing your child scared and not want to do something and being helpless and trying to explain why they need to have it done. Alfie was sat on his Daddy’s knee and when the blood was being taken, he was so good. I was so proud of him.

After his blood test it was just after 11am and we were told to go back in a couple of hours for his results. As Michael’s parents only live five minutes from the hospital, we decided to go there for lunch and a drink as it’d already been such a long day. Alfie was in a good mood and as soon as we got to his nan and grandad’s, he was straight outside to help his grandad in the garden. It was lovely to see him outside after being couped up at the hospital all day.

Just before 1.30 we went back to the hospital for his results and they needed to do his blood pressure again as the reading from earlier wasn’t correct. Despite trying their best, they couldn’t do it as Alfie’s arm is in between cuff sizes, so it wouldn’t work. We were given yet more info on HSP and a booklet for the Community nurses as he would now be under their care for the next 6 months. When we were given his results, we were just told that it was HSP and the rash would clear up on it’s own. He wasn’t given any medication, any cream or anything and I was to expect a call from the Community nurses to book him in for his first appointment.

True to their word, I got a call later that day, and strangely enough, the nurse who called me is an old family friend that  I used to work with when I worked with my parents and I’ve known her years, so it was nice to have a friendly voice talking me through things. What she explained that the hospital didn’t was that the joint pain could get worse and he could also get sickness and diarrhea and to keep a close eye on him. She also explained that the rash could come and go and next time he gets poorly then he could also get this rash. After leaving the hospital, we’d been under the impression that it was only the rash which was the problem, which would clear on it’s own. It seemed this wasn’t the case though.

The next couple of days were quite hard as he was really unsettled in the middle of the night and spent 2 nights in our bed from approximately 1am. The first night he was really unsettled and was tossing and saying he had hip ache. The following day on Tuesday, he was quite sick before tea time. It came out of nowhere but thankfully it didn’t upset him too much, as it usually does, and he even wanted to clean it up himself. Tuesday night was really tough – he was awake for hours, tossing and turning and crying cos his legs / hips were aching so much. He was also refusing medicine and eventually we had to pin him down to get him to have it. This was enough to get him to settle so we could all get a couple of hours sleep. During the course of the week, the rash has got worse and has spread from just the bottom of his legs, to all the way up his thighs and on his arms too. Apparently this is quite normal and the rash can come and go. I have noticed that it does look worse on some days than others.

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This was on a day where the rash looked particularly terrible and had gotten a lot worse than earlier in the week.

On Friday, I took him to his first appointment with the community nurse who checked his blood pressure and his urine sample, which she found to have protein in it, so she told us she would need to send it to the lab for further testing. I was also told that we need to get a urine sample on Monday morning and drop it off at the doctors to be sent off. As Alfie isn’t dry over night yet and is still in a nappy for bed, I’m not sure how we’re going to get a sample of his first wee! Once we’ve got the results back from this round of samples then that will determine how frequently the nurses will need to see him. Hopefully, it will only be once a month, but it may need to be as often as once a week.

I have been incredibly proud of Alfie this week. He has been so well behaved throughout all of his appointments and has done what we’ve asked of him. He’s really been through it the last few weeks, with his constipation and being back and forth from the doctors and now having the HSP virus.

I can only hope that it clears up soon and the Community nurses will only need to see him once a month. His appointments are going to be going on for three months after the baby has arrived, which is quite a bit of a curve ball that’s been thrown at us, but Michael and I are a team and we will deal with it together. The most important thing is that our little boy makes a full recovery.

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2 thoughts on “Do you know what HSP is?

  1. Wow what a little superstar you have 😘 I’ve never heard of HSP before and it was definitely an interesting post to read. Kids definitely seem to be able to handle things much better than we think especially when it comes to hospitals and tests. Hoping that the virus clears soon and you get some positive results xxx

    Like

    1. Thank you Danielle. I’d never heard of it either and when researching online after him being diagnosed with it, it says it’s quite rare. However, the doctors and nurses told me it’s actually quite common! Thanks so much for your kind words xx

      Liked by 1 person

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