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Difficult family time around final audition


Regattah

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  • 2 weeks later...

I've just opened this thread up and noticed that I didn't thank everyone for their last comments - very rude of me!

 

We're back in hospital, but our local one this time. DD had something happen yesterday which we think, but are not sure, was a more minor stroke. Her speech went extremely strange, not being able to get her words out at all, searching for words really slowly and not knowing how to pronounce words. She also went deaf and both eyes really hurt. Her right arm and leg went weaker again too, but not nearly the same as last time. All of that has got better again now, but it's just so worrying that it's happened again. Her INR (blood clotting speed measurement) has dipped below therapeutic levels so she's on an IV heparin drip to bring it up quickly.

 

I'm sorry to vent here, but it's therapeutic for me. I can't say too much on Facebook as she will see what I write!

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Yes that could be the effect of the warfarin as it thins the blood so blood clotting won't be quite so good.

 

My partner was on it for a time and he had to tell the dentist he was on it and when he had to have an op a bit further down the line he had to come off it for about a month before.

 

Sorry to hear she has had a bit of a dip again but at least not as bad as last time which is encouraging in a way.

 

When he was on the warfarin he was also told he couldn't eat grapefruit or spinach and he had to stop taking the fish oils capsules (I practically force him to take!)

 

Also there is another blood thinner around which we researched at the time......don't have any idea if would be suitable for a child though.....which is more expensive to buy but which you don't have to keep having your blood tested all the time.

 

Because he was only going to be on it for a short time he decided to stay with the warfarin but the London doctor he was under (London Heart Hospital) was willing to let him go on this other one......will get the name in a minute!

 

So is your little DD back in hospital or out again now?

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Dabigatran was the name of the warfarin like drug which means you don't have to have your blood levels tested so much and is supposed to have fewer side effects.

It is more expensive but also because it is newer some Authorities would prefer the long tried and tested drug etc.

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So sorry to hear of another setback, hope she continues to improve. It must be particularly hard not knowing the cause. I am amazed that you keep it together enough to think that ranting on the forum is something you should apologise for! And that you have the strength to even type coherent sentences.

All my thoughts and good wishes to you and your family.

xx

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Yes, CeliB is so right. Please rant on the forum as much as you want if this helps you in some way, and shout and cry and do whatever you want with us......we want to be a supportive community for silly things and serious ones, and sometimes it is easier to open our hearts to virtual friends than to relatives or people too much involved in our lives...

I feel for you Regattah, take care, xxx

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You're all lovely!!

 

I am very relieved to be able to say that the heparin has done its job and thinned her blood enough so that she is in a 'therapeutic' (protected) range! This means that whatever is causing the strokes is still going on underneath, but at least she shouldn't have another one whilst the blood is thin enough that it doesn't clot easily.

 

The warfarin measurement (INR) is also almost there, so once it is she can come off the heparin and out of hospital. She'll have to have blood tests every 48 hours (her poor arms are a mess as she's having blood tests every 4-6 hours at the moment).

 

The children's ward over here are going to take up her cause in trying to establish a plan to look into the cause more pro-actively. The fact that it's happened again makes this more urgent, as they didn't seem that worried they hadn't found out the reason last time. I think they thought it might just be one of those things!!

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Lin - warfarin does indeed have loads of disadvantages. It's not just the blood tests, she also can't eat foods like you mentioned and also greens and avocado - which she loves! Well, I say she can't eat them, but that's not strictly true. She just can't suddenly take lots more than is in her usual diet.

 

I did talk to the hospital about the newer class of drugs last time, but they're not licensed for children and they're actually also not usable for her needs, apparently. It's a shame. We're trying to get the coagi (sp?!) check machine situation sorted. This is just a pinprick like diabetics use. The problem is that even though we can get a machine, no one wants to take responsibility for calibrating etc the machine as she is a child. Apparently it makes a difference!!! None of the medical staff can see why it makes a difference- it's the machine manufacturer and the tech people in the NHS who are citing problems.

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so sorry to hear of your DD's latest trauma - I hope she is soon well enough/stable to be able to come home from hospital. My heart goes out to you both. It is often harder watching someone you love suffer than if you are the one ill yourself and I know you would swap places with your DD in a heartbeat if you could spare her going through all of this. Sending you best wishes that she continues to recover and that they are able to find out the cause and stop it happening again. Please do rant on here all you like. I know you need to stay strong for your DD (and the rest of your family) but you need the support too and I am sure every forum member will be rooting for you and your DD and as supportive as we can be over the internet.

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Dear Regattah, So sorry to hear this news, I hope they can find a reason for her illness. So frustrating for you that they can't sort the machine out. I can only begin to imagine what a stressful time this must be for your family and I send you my best wishes.

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Thinking of. You! Wishing your daughter a speedy and sustained recovery and all those who love her some peace of mind!

For my part ( for what it's worth) please feel free to 'vent' here. This is, in my experience a place to find support and friendship and no one would wish you to censor yourself for our sensibilities! Vent away! Xx

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Sending our best wishes to you and your daughter. I hope she feels better soon. Good luck to your dd also as she looks forward to starting in sept. You sound a very strong close family. Keep positive and rant away on here as much as you need xx

Edited by Guesty
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Hi, just wanted to give an update. Apart from a brief escape from Thursday evening to Saturday, we're still in hospital. It took ages to get her INR sorted, and now they're actually wanting to get it higher still. She had another funny turn yesterday and she still has a tremor in her right arm and leg.

 

They are doing all they can to get to the bottom of it (this last episode may actually be part of the stroke rehab or potentially hemiplegic migraine) and is having another MRI with MRA on Tuesday.

 

I'm feeling slightly guilty that I'm missing older DD's Janet Cram, plus upset that I wanted to see it!

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