Update about Kayleigh

illihor

We are now back from bristol hospital who couldn't have been better to us. When we first got there was told she was going to have steroid IV something I never new about but that was soon very quickly cancelled on seeing her consultant. I showed her the drawings and she was very sad and is taking them to help use it for training (Kayleigh is a case study up there and down here), she told me not to ask her if in pain but let her tell us at her own point whether it's in pictures or out of the mouth. Obviously if we see she's in pain but not willing to quit (she is so stubborn) then we have to tell her no and to try and pace her, which we're doing quite well.

She starts Etanercept next week and her consultant has now started her on 10mg of steroids for one month then 5mg for another month then off of them, at which point she hopes that the Enbrel will have well and truly kicked in and taken over the job. She had physio and Gynny is lovely. Bit dissapointing at the number of sessions but I've got the info and a proper idea with specific exercises to help her. I have a lot better understanding of what's going on with her and feel a lot happier on the whole. Everyone was very surprised at how far she has come on but the arthritis is still very active especially in hands and arms which they aren't happy about but we're heading in the right direction.

I got a bit pushy while up there especially with her meds as they kept putting the wrong times down, I have very specific times of giving her things and they just weren't listening very well but got it sorted. Then to come home I knew we wouldn't have physio on Friday (today) as Gynny is only part time and the other one that can help her is on annual leave this week, (so why give us an intense physio appointment with only half the staff very disorganised). Anyway I told them on wednesday evening to send the prescription down the pharmacy that night so it would be ready for when we leave at 3. They all looked at me shocked but the dr agreed with me that as soon as physio had finished we could leave lol. I basically told them if we couldn't leave by 4pm 5 at the very latest I would be staying in till Friday as I didn't want to travel that late for 2 hours on the train with Kayleigh then have my husband wake all the kids to come and get me as we couldn't get a babysitter lol. It worked and the drugs were ready by midday haha.

Still on the whole we have both come away with more help etc. I'm just hoping that Enbrel will be the wonder drug they are expecting it to be and she will respond well to it. I'm still very scared at the whole prospect of it but she needs it.

I am shattered though, how come you don't do much when in hospital but your exhausted from the whole experience. It's very nice to be home but boy am I drained.

Michelle xxx

dreamdaisy

Hospital trips are emotional. They are tough for the patient, tough for the carer, and tough generally because sometimes so much depends upon them. You go girl - you tell those docs what they need to be told! No-one knows your child like you - always remember that. You want to know where Kayleigh gets her stubborness from? Mummy is my guess!

So, enbrel here we come. I sincerely hope it does what it is meant to do. I don't do this very often so brace yourself: (()) DD

illihor

Yes I am VERY stubborn lol and very strong willed as is she, we clash a bit because of it but in a good way and certainly makes her do more than expected as does having 3 other children charging around at home as she wants to do it too lol (they said that works so much in favour to have other siblings of similar age as really helps them to keep moving).

Thanks for the Enbrel hugs this week is gonna drag till Friday comes round again.

Michelle xxx

anniesmum

Hi Michelle - good on you. Us Mum's know more what's going on medication wise than the nurses and if we don't shout up for them who will. I know I like to feel in control of what is going on with my little girl. Poor you - the whole thing is exhausting and having to try other meds - you just can't believe how many chemicals you have to put into your child to try and get them to have a so called normal life. Tough times Michelle and I'll be thinking of you and your little girl and hoping this next ordeal will do the trick. Lucy

worriedmum

Michelle,
I'm so glad you got to Bristol. It looked like there was no hope the night before you were due to leave and when I looked the next day and found o post from you, I thought, perhaps they had found a bed after all. I'm so pleased they did.
Ginny is lovely and extremely experienced - she has picked up joints in Freya that have been missed by both Dr Ramanan and Dr Clinch and she is particulary good at spotting tricky, very small joints as opposed to the big, obvious ones. Make the most of her expertise! Sorry it was a bit disorganised though, though actually,t sounds pretty intense so you both probably had enough by then! Glad you got back safe and well and are now catching up a bit. You're right, you do nothing all day in hospitl, just lots of waiting around, but it is absolutely exhausting! Like nothing else! It;s the emotional stress and anticipation I think, plus trying to keep a small person amused the whole time just wears you down.
Anyway, put your feet up, have a glass of wine (wish I could join you but still 7 weeks to go before I have my baby!) but nonetheless, I'll be thinking of you and Kayleigh.
lots of love
Sam. xxx

illihor

Thanks Sam, and congratulations I didn't realise you were pregnant i've only just started being able to drink wine again as I've only just finished breastfeeding and I'm that type of person that won't drink when pregnant or breastfeeding lol been a very very very long 8 years lol (as i've either been pregnant, breastfeeding or both lol did have a short 5 month gap in there but I don't remember it lol)

yes Ginny is fab she said she will see us on October 21st when we're back up there for clinic with Dr Clinch which will be another long day as will have to get up at 6 again to get the 7.25 train up as her appointment is at 11.20 eeek. She explained things so well to me, just a pitty she was still on mat leave when I first went up with Kayleigh so she's never seen her at her worst. In terms of physio and help and advice I got so much from this 3 day stint even if most of it was waiting around. I understand things so much better and can see where they are coming from as they said to me ok so she's way better than December that's good but she's way worse than everyone else her age and tha'ts what we're aiming for (way to deflate my bubble lol) and I understand better when they say they're not happy with how methatrexate is working for her and starting her on Enbrel. I think the key thing for them now is to get her muscles back in working order as she's just got no staminer

today we managed a day out without the wheelchair. I had to carry her a fair bit and tbh it wasn't a long time out about 45 mins around the Range then I took them Jump where she played in the baby area the whole time then I had to carry her back to the car. took her 1 1/2 hours to eat dinner as she was tired and sore kinda says it all.

michelle xxx

andylambs

Sounds like Bristol was a trip and a half. Glad that you're home safely and it was all useful for you. Such a shame they were disorganised. The therapist sounds like an absolute star.

Good luck with the Enbrel. I'll be thinking of you.

I'm holding off on Philippa's Enbrel injection for this week for the time being as she's got a cold and is running a wee bit of a temp. I've checked all the documentation and nowhere does it define how much of a "fever" is enough to stop the injection!

Hope you're feeling a bit more rested.
Andy

illihor

andylambs wrote:

I'm holding off on Philippa's Enbrel injection for this week for the time being as she's got a cold and is running a wee bit of a temp. I've checked all the documentation and nowhere does it define how much of a "fever" is enough to stop the injection!

Hope you're feeling a bit more rested.
Andy

Yes they never gave me a deffinate either but said we mums/dads know our children best and if we're unsure or feel it's best to avoid then we are more than likely right I was told a light cold where they don't seem down it's ok to give but a temp or you know there's something brewing then best to hold off. Hugs for Philippa hope she's feeling better soon. Have you had any news on it being prescribed over here or seeing a consultant?

Michelle xxx

andylambs

Thanks Michelle, that's helpful.

We're seeing the local rheumatologist this coming Wednesday. And we're already had the first delivery of Enbrel, 2 months worth. Plus we got one more box from the US so I've now got a fridge cramp packed with boxes of medication - no room for food! Now we're in the system I can change the schedule of the deliveries so I won't need to get any more for quite a while.

I'm keeping my fingers crossed for Wednesday. I think she's fine (other than the cold), but I'd like a professional opinion.

I'll let you know how we get on.

Cheers,
Andy

illihor

andylambs wrote:

Thanks Michelle, that's helpful.

We're seeing the local rheumatologist this coming Wednesday. And we're already had the first delivery of Enbrel, 2 months worth. Plus we got one more box from the US so I've now got a fridge cramp packed with boxes of medication - no room for food! Now we're in the system I can change the schedule of the deliveries so I won't need to get any more for quite a while.

I'm keeping my fingers crossed for Wednesday. I think she's fine (other than the cold), but I'd like a professional opinion.

I'll let you know how we get on.

Cheers,
Andy

Sorry fortgot to ask before but how is everying?

Kayleigh is in a lot better place right now although got the attitude from hell as just started school so going through that settling in I'm tired stage. She screamed for 45 minutes at bedtime today I try and not treat any different than the others but a part of me just wanted to go up and hug her even though it was a foul mood i'm angry/tired screaming fit I just wanted to cuddle her but I know for the others I would never have done thatso left her to calm down then went into her. Feeling really bad but I know in my head I can't wrap her in cotton wool she needs to be treated (to some extent and temper tantrums deffinately) just like I would the other 3.

She's doing really well at school and her home/school diary keeps coming home as pain level 9 it's on a a scale of 1-10 10 being good 1 being bad. I think today personally should have been recorded a slight bit lower but she tends to expend it all there then we're left picking up the pieces it will def be a BIG point we will raise at parents evening in 2 weeks time gulp.

Michelle xxx

andylambs

Hi Michelle,

Pip is doing well. She's taking a bit more paracetamol this week, but I really do think that's the weather.

I knwo exactly what you mean about Kayeigh putting everything in at school and then being horrible at home. I've been dealing with exactly the same thing this week. Pip hates giving in, and is rubbish at articulating that she's in discomfort - full blown pain is not such an issue. Fortunately, her teacher is very experienced in small girls and one day this week sent her off for paracetamol from the school nurse plus her rice bag even though Pip hadn't mentioned anything.

Does Kayleigh find a rice bag useful? I'm not always convinced it's the action of the warm rice at all that works for her, but more the comforting factor of having her own familiar bag. She chose the fabric herself which helps. In some respects it's a bit like a comfort blanket.

Temper tantrums are a nightmare. Pip's younger sister has been sent to bed with bread and butter and a glass of milk for dinner twice in the last two weeks! I have to remind myself I can't give in because I'm only making it worse for the next time. Such a shame you can't take a GCSE in parenting while you're pregnant!

Cheers,
Andy

illihor

That's made me laugh I would love a GCSE in parenting but no such luck and they never come with manuals either do they lol.

Yes Kayleigh has a wheat bag but rarely asks for it, I'm trying to encouragfe her to use it more as even if it's not the bag doing anything it's the fact it'll force her to sit and rest for a bit . School are always saying she did really well today doing this doing that she comes home and flops is mega grumpy but refuses to admit pain we've had one sad face picture this week but she says she doesn't want to draw anymore ever since I showed people those pictures she doesn't want to do them anymore far to clever for her own good me thinks.

Another problem is her speech is not very clear at all (years of neglet by the dr's and terrible glue ear no matter how much I went on about it ) so she doesn't even speak much at school. She's come in from the edge of the room where she used to spend the whole time (nursery and reception class in one big unit) but still won't speak. I was in speaking to her teacher the other day and nicholas had grabbed her arm and pulled her over to which she came and told me (years of practice I understand her) the teacher just stared and looked at me obviously the most she had heard but also how unclear it was. I'm glad I pushed for speech and language as she's now in the system and been having therapy since Easter.

Oh well it's the weekend now what is everyones plans? Me we got a birthday party to go to this afternoon and I'm potty training my 2 (well 2 in 2 weeks lol) year old who is doing fantastic

Michelle xxx

illihor

She's been in such a good place for a while now the steroids have really helped big time. She's got 9 more days of 10mg then a month at 5mg then comes off them. We see the Bristol team again on 21st October (think I'll start taking shares out in the train company lol) and I so hope that things have calmed down for her.

We saw our local consultant on Tuesday and she was dissappointed that the arthritis is still active in her wrists/fingers and neck possibly jaw (but those two areas are so hard to tell). She said being on MTX, Enbrel and steroids should have stopped that humph I still think she's doing a lot better. She's told me to try and stop giving her ibuprofen which I have tried but I think it's a no go yet have just put her back on.

She has a home/school diary that a specialist school down here has produced for her and they have a pain/fatigue scale they have to fill out evvery day and it has to be the same person. She's been at 9 (1 bad - 10 good) pretty much all the time last friday they put it down as 8 (fair enough that's injection day) then back to 9 monday and tuesday, wednesday 8 and today 7 hence why i'm putting her back on ibuprofen although I hadn't told the school to stop giving it her.

Still she's so much better than this time last year I'm just happy to have my little girl back happy, chatty, running at times and able to walk a bit further than before.

Michelle xxx

dreamdaisy

This is sounding pretty good, illihor. My consultant has frequently expressed her disappointment at my arthritis remaining active (she's disappointed?!) but the drugs do not necessarily knock it all on the head. Arthritis is a stubborn beast of a thing, it takes a great deal to make him back down! I think your little girl is doing fine: I hope that stopping the steroids does not have any adverse affects, that sounds like a sudden withdrawal to me. As adults we have to phase it by 2.5 mgs at at time, perhaps it is different for children. I don't know. I must find out! I wish you all well and have a lovely week-end. DD

illihor

Thanks DD MTX hurt her today got our flu jabs tomorrow eeek and I think I've just come down with a cold oh great lol

She woke up this morning complaining her left hip is hurting I could see it in her face when she went to sit on the floor poor thing but I've shipped her off to school :? not sure what to do for best but here's hoping.

Michelle xxx

andylambs

It is horrible. Several times this week I dosed Pip up on paracetamol and sent her off to school. And we know she's not got anything active right now - it's just the stiffness from damaged joints.

My sympathies to all of you who have children in pain and who still have to push them as you know its the right thing to do.

I keep having to remind myself, that no matter how much I want to wrap her in cotton wool and coddle her, I can't. She still needs to grow into an independent adult and be able to look after herself. It's totally unfair but Pip does have damaged joints; she will have a higher level of background pain than her sibling. She has to learn that that is normal and life carries on. I wish it weren't so, but it is.

Plus it's not fair on the rest of the family. When we're going through a bad patch to a certain extent the whole family revolves around the arthritis. When things are good (or as good as they can be) everyone needs to do normal things.

I hope that makes sense and I don't come across as a complete bitchy dragon, as that's how it feels.

I'm all depressed now, what a way to start a Saturday

dreamdaisy

It is a hellish disease with which you are coping, it is hellish for the affected child, hellish for the siblings who may not understand why all the attention is focused on that child, hellish for the parents as you do have to be cruel to be kind.

I was chronically ill throughout my childhood. I remember my mum wheeling me to school on her bicycle, I was too weak to walk, couldn't ride my bike for the same reason, but I had to go to school so she wheeled me there. I loathed her with a vengeance on those horrid days (never told her tho, just sulked!) but now I am grateful, because she taught me how to cope. If she had not been so determined to teach me that life goes on I wouldn't be able to cope with the hellish life I have now. You do have to harden your hearts, load them up with painkillers and force them out of the door - but I am sure you all recognise the days and times when that is just not an option.

The beast that is arthritis affects everyone in the family, without exception. Often the calmest and most accepting person is the affected child - they know no different, they just get on with it. I think it must be far tougher for the parents and siblings. You want to help, and there is nothing you can do. The good things are there to be seen, but on sonedays it is just too hard to spot them. I am thinking of you, andylambs, and everyone else too. Today the injustice rankles. DD

illihor

hugs to you both I so know what you mean and feel. We've spent many a weekend just stuck in the house trying to let her rest but then I feel guilty on the others. Kayleigh came home with a pain/fatigue level of 6 in her book yesterday I knew she was going downhill and it's also reasurring that the school has noticed this but still hard to see.

Today we have had fun playing lego and now cutting and glueing something all kids love to do and they don't realise I've done it specifically so it's quiet things to rest her up a bit.

I think I'm lucky in that I have small age gaps between my kids. Nicholas is 7, Christopher 6, Kayleigh is 5 next month and Stephanie is 2 end of the week. They already have forgotten how things were before and have accepted life as it is we have indoor days and days out. I grow my own veg and get the kids involved heavily in this as on her bad days Kayleigh prefers to stay in while the boys eagerly rush outside to help.

I do feel bad that I just carted her off to school on Friday knowing full well that a day at home would have done her the world of good equally as well but it's so hard knowing the RIGHT thing. I just hope in years to come she'll understand as right now she cries and says I don't want to go to school She always has fun once there and haven't got a call so far this term.

Michelle xxx