Scarlet fever and antibiotics

Oliver had his birthday recently. He woke up with a red cheek and a cold. Thankfully it didn’t ruin his day, he opened presents, opened his cards and was quite social. By the time of birthday tea his other cheek was red. We put it down to sugar or an eczema flare up as he didn’t have a temperature and showed no other signs.

As he seemed fine I sent him to school as normal, explaining to the teacher about his lack of temperature but with the proviso they called if he showed any deterioration. He was fine at school, didn’t eat much but that’s not unusual. He refused his dinner, stopped drinking and went to bed and to sleep on his own! He slept through. The alarm bells were ringing when I woke at six and he was still asleep.

Rash had spread to his arms, got an emergency appointment as it seems scarlet fever and slap cheek is going around. The doctor checked him over and debated between the two possible diagnosis. After discussing his temperature which was over 38 last night and his reluctance to put anything in his mouth he decided to treat for scarlet fever. The lack of eating and drinking suggesting sore throat. The fact he had taken calpol the night before with no fight meant he felt rough. He had chicken pox a couple of weeks ago so we have been given antibiotics. Four times a day for ten days of the most disgusting medicine possible. As you can imagine, I’m thrilled.

Oliver does not like medicine. Took me months and many bottles to get him to take liquid paracetamol. Now I present him with this stuff. He understands “sore” and he knows when he has calpol he feels better. I think he thinks I’m trying to poison him with this stuff. I’ve put it in juice, he refuses to drink. I try to bribe with goodies if he takes it. I even resorted to pin him down and try to make him swallow but failed. He’s never had antibiotics before. The rash is now everywhere. With him having just had the pox, I’m more concerned than I usually would be over this, there can be an increase in other things like pneumonia so I need to find a way to get this down him. Usually if it meant that he could fight it on his own but would stay off school then I’d go with that, as exhausting as that is. He can go to school 24 hours after starting antibiotics but that’s not the reason I need him to take them. I’m terrified of complications because he isn’t a healthy eater or sleeper and his immune system is not the best so he’s a prime candidate for complications.

How do you explain to him that this will make him better when it’s so vile? We are hardwired not to eat “yuk”. I’ll try some in yoghurt later and see how that goes but why can’t someone make medicine that doesn’t taste like crap? It would make my life a little bit easier. I’ve tried the mummy has some/Oliver has some, in the hopes of reassuring him but he looked at me like I was mad. It can’t be just us who have this problem. I’m tired of being the bad guy when I’m just trying to help but that seems to be par for the course in this family at least.

Xx

7 days, 3 hospitals, 2 pox and one pizza ceiling.

It has been a very eventful week. My daughter had a couple of worries with the baby not moving and thinking her waters were leaking so she went to the doctor who immediately sent her to the maternity assessment unit as her blood pressure was high, her pulse was racing and her temperature was up.

At the unit, they hooked her up to monitors, started a trace on the baby, called a consultant and told us they had 15 minutes to treat if it was sepsis and may have to deliver at 33 weeks.  As you can imagine, this did nothing to help the blood pressure situation and with the consultant appearing in 10 minutes (I know, right, you never get them to appear that quickly) we were a bit worried.  I had taken her to the hospital, her husband was at work.  I had a word with the midwife who said to phone him because if they have to do anything it will be done quickly.  So they hang a drip with fluids and paracetomol to try to get the temperature under control.  She had a cold so then they were thinking flu, did swabs, took blood, and then moved her to HDU on the labour ward for 1-to-1 care until stabilised.

Thankfully, they managed to get everything under control and four days later she was released.  Unidentified infection treated with broad spectrum antibiotics, baby measuring fine.  Phew!  Lets go back to enjoying the easter holidays.

2 days later I get a text off one of the mums at school.  Her son has chicken pox.  He is in the foundation unit same as Popples, they have FS1 and 2 in the same unit.  I said I would keep and eye on Popples and if she didn’t get them I would be bringing the kids round for a pox party.  Didn’t need to go anywhere, she had a couple of suspect spots til after the bath- then she was head to toe, even in her hair!  Brilliant!  They could get the pox finally done with and not miss any school.  Oliver showed no signs except a snotty nose which he tends to have until spring anyway.  She had a raging temperature and couldn’t sleep due to the discomfort, so that was fun.  The calamine cream didn’t seem to work, so she has had a lot of cool baths.

2 days after that I was putting up the trampoline they have got for birthdays in the hopes it would save my furniture.  I managed to get the springs onto the frame which made them happy and they sat on it whilst watching me sort out the safety net thing.  As I was opening the metal rods that go at the top to keep it stiff and in place, I didn’t check to see exactly where they were.  They sprang open and caught Oliver in the eye.  Totally my fault, I know better and I should have checked and rechecked.

He started screaming, under his eye was bleeding and I applied a cold compress and tried to check his eye.  He wouldn’t let me look, I couldn’t drive so I asked my daughter to take me to A&E.  After 3 hours a doctor tried to check him but with him not being very cooperative and just alternating between “no, hurt” and singing get well soon, we didn’t get too far.  As a precaution he sent us to another hospital 20 minutes away that has a specialist eye department. Thankfully the nurse there let us jump the queue as by this point Oliver was really agitated.  The nurse and I had to hold him down, he had stuff squirted in his eye and the specialist finally spoke. “No abrasion, no damage to actual eye” and I almost cried with relief.  Oliver couldn’t tell me if he had blurred vision or if it felt wrong so we had had to go to the hospital.  He gave us some cream as the cuts were near his eye and he didn’t want it getting infected.  6 hours after setting off for casualty we could finally go home.

That night in the bath, I noticed a couple of blister spots on his back.  Yep he had the pox too.  I offered him some medicine last night and he nodded and took it so must have been feeling rough.  He’s having a pyjama day today. Hopefully all spots will have scabbed by school on Monday.

Oliver has returned to his old favourite pastime of throwing things.  He is bigger and stronger now so can throw a lot further.  Gooey louie now has no snot left as it’s all been thrown to the ceiling as it sticks.  I made pizza for lunch today so they can pick at it throughout the afternoon as they haven’t had much appetite.  Oliver took his into the kitchen, I thought he was eating on the picnic mat he’d made me put down for them the other day. He came in with a half eaten piece, put it on the plate then took another piece.  He came back again with a half eaten piece so I went to see exactly what he’d been doing.  I saw a bit of cheese on the floor so I picked it up and asked “what’s this” he looked up and said “Stuck!”.  I followed his gaze and sure enough it was stuck.  Bits of pizza stuck all over my ceiling, and tomato sauce where the cheese bit had dropped off.  He is obviously doing some kind of gravity experiment or it must be really good fun to make things stick to the ceiling.  He helped while I was cleaning it up by pointing out the bits of sauce I’d missed.

An that was a week of our restful Easter holidays where I was hoping to recharge a little.  Max got the best deal, his respite people stepped in and took him for a few days as he was stressing about Emily in hospital and the whining of the poxed one gets right on his nerves, so at least someone got a break. Oh and we managed to get the appeal done and sent off too.

xx

 

Genetics Counselling- Stage 1

After we saw the psychiatrist with Max a few months ago and he took a detailed history, he asked if we would like to be referred to genetics.  With every professional we’ve seen over the last year making some comment about my X chromosome we decided to be referred.  We had the appointment a couple of weeks ago with a lovely woman who drew a family tree, took a very detailed history and then explained the options available to us.  I told her about the boys births and how they weren’t textbook which appeared to make no difference really to what she was saying, although her specialty is genetics so why would it?  It seems that it IS my chromosome that has affected the kids, and may have caused miscarriage etc etc but it’s not conclusive………yet!

As a parent I feel guilty anyway, I think it’s part of being  parent anyway but now I feel really crap.  I know logically there’s nothing I could have done differently, no one had mentioned the X factor and I was told there was little risk as I was with a new partner.  But I still feel it’s my fault.  So I had a bit of a wallow for a bit, but then that doesn’t help anyone so what will help?  Well they took a blood sample off Max to run DNA and to check for 66 X chromosome abnormalities- technology has advanced, although they have discounted fragile X.  He was really good giving blood but then I was waving a Mars bar at him for when he was finished.  The geneticist also asked if we wanted to take part in the 100,000 genome study which maps as much as they can at the moment and then more as technology gets better.  It shows like cancer markers and stuff, so we will have to have a session of counselling before signing for that.  They will also compare it to Max’s for now to see if there are any blatant defects.  I’m not explaining it very well am I but there was a lot of information and I’m not remotely scientific.

I know there’s no cure or nothing I can do for my family in the immediate future and the tests may come back with a definitive “yeah, you broke your kids!” which I will have to deal with but it may help other families.  It may help my daughters make informed decisions when it comes to them having children.  So after thinking about it, we’ve decided that if they want us on the study they can have us.  I don’t really like the idea of people having my DNA, I obviously read too many books where people have been set up by the cops, but I feel I should do it.  I am not one for eradication and making perfect humans (eugenics?) but I am for education and informed decisions.  Maybe we can narrow down some diseases and syndromes and find better ways to educate and understand those affected.  I don’t think we should try to eradicate people who are different- where would the world be without those who think differently?  It would be nice though to make life easier for those who are different.

As I get older I realise I don’t know anything.  I have my core values and morals but I find I fluctuate about other stuff so much.  There’s no black or white in so much of life, it’s all shades of grey.  I find that my feelings come second to what I believe is best for my family.  I think, honestly, that if it was up to me I wouldn’t go down the family genetic route but I have to think about everyone.  I love my boys, but it’s hard and personally I wouldn’t not have them in my life (oh that’s bad writing).  If I’d known, I would have had them anyway, because there is so much good too, so much love and you get to share a different world, but it is bloody hard work- not least educating people who have no clue how to treat someone different.  If my daughters don’t want to take the chance of living this life again with their own kids then that is up to them and I fully support them.  Maybe we will get some answers, maybe we won’t but I will always try to make my children’s lives better- all four of them.  Information is never a bad thing, is it?

 

xx

 

Discharged from paediatric services.

  • We had an appointment at the hospital on Tuesday.  Now this post may be a bit random at times because I’m still trying to process it.  The consultant has discharged Oliver from the paediatric hospital service aged 5.  There’s nothing they can do for him.

Now on one hand it’s nice to have some honesty but on the other hand it’s 20 years since Max was diagnosed and there’s still nothing they can do?  I know the NHS is at breaking point, so I understand them wanting to lighten their books and get rid of cases where they can’t do anything. But it feels like we have just been basically told to get on with it.  The doctor said “yes his behaviour might be unmanageable now but it may calm down as he grows up.  We have no sleep clinic here it’s miles away and I don’t know how you go about referrals” which made me ask who does know?  Apparently family support groups can help but they are full round here and aren’t really able to help anyone else at the moment.  Social workers are overworked and we aren’t an at risk family so no chance of getting one of them.  School nurse should know more.  If anymore non-autistic behaviours arise see GP for a referral.  The problem is as I learned through Max, is that all behaviours are put down to autism once they have a diagnosis.

I feel quite alone now and that it’s down to me doing the speech therapy work- we have a great ST, he sees her once a month and she has given me her phone numbers so I can check I’m on the right track.  School aren’t doing his IEP’s, he actually got sent home with homework last Friday and asking around it was the same as everyone else’s- Finding Nouns.  So you can guess how well that went down.  I know he’s my child and my responsibility, but surely school should be doing their part as they agreed to take him and the extra funding he came with.

I wonder if deep down I was expecting more from the professionals, if I was expecting science had moved on in 20 years.  I suppose it has in a way because the doctor made sure to point out to me that it was probably something from my genes that made him this way.  It’s always nice to hear that.  We have our first appointment at genetic counselling next month so we’ll see what they say.  I think overall I feel abandoned.  It’s down to me and the ST to reach him and make him fulfil his potential- whatever that may be.  I am not trying to make him conform, like school is, I’m trying to find a way into his world and share mine and maybe meet somewhere in the middle.  I’m trying to find a way to ease his frustration and make him happy.  I’m trying to stop the violence and tantrums and tears.  I’m trying to get people to realise he’s just as important as everyone else and has a voice and rights.  I’m trying to make him know he’s loved, no matter what he does.  I’m not worried he will fail- he can’t, I’m worried I’ll fail him.

He’s different- not less.

 

xx