dd's hip, still ongoing, just here for a moan really

[piratecat]

Hi, things were going ok, but we are back to big pain flare ups again. We had an appt with the orthopedics doc 2 weeks ago who diagnosed this tight iliotibial band. Prognisis it will come and go.

dd did 3 days at school last week, followed by a good weekend. Then bam, monday morning it's back big time. This morning woke again in agony.

Just when you think it's ok it comes back. I am living with a child with a disability, and geting our heads around this is hard. I go from being strong to feeling angry and helpless. Can't plan anything now and live from day to day, which is hard to get your head around iyswim.

I have direct support/contact with her physio, but she can only reccomend the stretches, which dd can only do if the pain is minimal. If it's inflamed then we just have to medicate and wait it out.

It's fucking hard. I think if this is the pattern now, then the doc may say we need to consider the cortisone injections. I have told dd this is a possibility in the future. Anyone have any idea how they make this slightly more comfortable for a kid?

have no idea, sorry but can't be easy for you and didn't want you to go unanswered.

Lots of hugs!

No experience of cortison injections, but know how hard it is to live with a disability that changes from day to day ("oh today you're not disabled..oh whoops, yes you are").

The only thing I can say is that, psychologically, it has got easier for us to deal with over time.

hiya thanks.

Cory my mate, so glad you commented. It's exactly that isn't it 'oh today i am disabled, or am i'

it's getting your head round it i guess, and seeking support. I have no rl support, in that family aren't nearby or able to mentally to give me support anyhow. I can talk about it here, which is great tho.
I have a few good friends, so can rely onthem to be to help me mentally.

It's the physical thing tho isn't it. Oh we need to go and get shopping, can we do that today. I have done a pain diary ans just summarised good days and bad. At the moment its more bad. She's been to school for about 6 days in a month I have kept school up to date, emailed head etc... Am a bit pissed off he hasn't got back to me, as he's a great chap but i guess i am living in this and at the bad times I feel more isolated than anyone realises. For dd's sake i almost want her to have the shots.

I can't offer any more practical advice above that I have offered before, but I can offer the knowledge that you just described my life, or rather my ds's life. One minute ok, but the next in agony. I can never leave our imediate area unless he is with me, I live with my mobile phone in my pocket all day, every day, waiting for a phone call from school, which I get a lot. He did a total of 4 weeks of school in the Autumn term, and that time was just dotted about here and there. My friends around here are super, but to be honest I know they are terrified of having him to play and the responsibility that goes with it. School is brilliant, but they are terrified of the worst happening on their watch, and are anxious to keep him safe. He is emotionally distraught and is taking on too much guilt about the whole thing. In short it is living nightmare, although I have a much more negative way of describing it on my darkest days.

So I know how you feel, I know how on the good days you can almost feel like a fraud in that there is nothing really wrong, and on the bad days you would do anything to take this away from your child.

It helps me to know that others get up every day with this being their life, and they carry on and make the very best of it, I hope it helps you.

God that sounds way more depressing than I meant it to, sorry. [embarrassed]

I hope that today is a good day for your dd and you.

You know that my dh has ib band problems? His are greatly exacerbated by sleeping on that side and sleeping on certain mattresses. It was trial and error to get our mattress right. Have you tried a bit of bed juggling? See what she's like after a night in your bed maybe and consider changing for a firmer/softer mattress depending on how she responds.

I think I said this on another thread but there is a surgical option to release the band. It is something that you can discuss if other avenues do not help.

I'm so sorry for your dd. And you. It's a horrid thing and comes out of nowhere when it attacks.

Swimming does help dh btw.

oh Sparkle, no, don't worry, your post, though depressing mademe feel lots better iyswim?

thankyou for sharing again, I know you have been on some of my other threads. I also hope for you that today is a good/better day. Can you remind me of what your ds has again, thanks.

SOH ello! I might investigate the mattress issues, as you've mentioned them before, and i am now at a point where i think it may help. It's hard to distinguish between good/bad nights in my bed or hers, because there hasn't been a pattern. Yet dd's bed is very firm indeed and i don't like it. Mine is firm too, but somehow more forgiving. I think i will have a look.
Soh, has your dh had any jabs? I i ask becuase i rang dd's physio today, and she is going to go and speak to the ortho dr, as luckily he has a clinic in the hosp today. I said to her if cortisone is the way to go i'd like to try that asap.

oh Sparkle, no, don't worry, your post, though depressing mademe feel lots better iyswim?

thankyou for sharing again, I know you have been on some of my other threads. I also hope for you that today is a good/better day. Can you remind me of what your ds has again, thanks.

SOH ello! I might investigate the mattress issues, as you've mentioned them before, and i am now at a point where i think it may help. It's hard to distinguish between good/bad nights in my bed or hers, because there hasn't been a pattern. Yet dd's bed is very firm indeed and i don't like it. Mine is firm too, but somehow more forgiving. I think i will have a look.
Soh, has your dh had any jabs? I i ask becuase i rang dd's physio today, and she is going to go and speak to the ortho dr, as luckily he has a clinic in the hosp today. I said to her if cortisone is the way to go i'd like to try that asap.

oops

I know Ikea used to sell mattress pads, which were like a couple of inch thick mattress designed to go on top of your existing mattress. You could perhaps soften your dd bed this way, without having to buy a whole new mattress (assuming they still sell them)

For us today has not been good so far, but ever the optimist I am hoping this afternoon will be better. Today my ds woke up crying in pain, I got him up, medicated and "physioed" (would love that to be a real word!) and he went to school. Church today, so as he is not allowed to walk there any more (health and safety nightmare!) I drove him to church from school, and stayed for the service to drive him back. After 20 mins, he managed to dislocate his ankle whilst sitting on a pew....only my ds could manage that, so had to move him and manipulate it back into place. Left him at school later, and no phonecalls yet so a good day so far, I guess!

This is a bit long, sorry.

My ds has Ehlers Danlos Hypermobile Type, he was diagnosed at 15 months, but didn't cause a major problem, just joint pain although sometimes very bad, until last September when he turned his head to talk to me and dislocated C2 and C3 in his neck. Not a partial dislocation either, but complete and catastrophic. The hospital and many Consultants we see tell me that the nature of his dislocations normally causes death or quadraplegia, so we have been lucky to survive this happening once never mind the few time it has happened since. If he had been as old as twelve he probably would have died instantly, as it would have caused him to sever his spinal column. As he was only 6 at the time (7 now) he still had some extra space around the spinal column to cope with the dislocation. How much space they can not yet assertain without an MRI which as his age requires a general and they don't want to do that yet. They can operate to fuse the two vertebrae but this will cause the vertebrae to stop going and as he grows this will possibly cause quadraplegia in itself. The nature of his joint flexibility is so pronounced in these joints (and others that are less life threatening although disabling)that there is nothing short of surgery that they can do, and he is at constant risk of serious or fatal injury. He wears a rigid collar during any physical activity, but can't all the time as it causes muscle wastage which makes the problem worse. He sees a physio regularly and we do phsyio morning and night every day. He has dislocated his neck, shoulder, knee cap, ankle, fingers and hip in the last few months, and we have rushed to hospital about 7 times since xmas.
Bit of a bummer eh!

Piratecat dd1 who I've told you has JIA has had cortisone injections, which were a little miracle for her,
but she has been on methotrexate now and since being on them has had very few flare up with her joints and hasn't needed any injections,
worth speaking to your dodctor about a long term medication or is it a case of the cortisone will be a one off that will nudge the joint in the right direction iykwim

bloody hell sparkle, I am so shocked and saddened by what you and ds have to endure.
From your post you seem to have done alot today, are you in another country? I am wondering this also because of what you said about the mri. DD is 8 and had an mri a few weeks ago when we were in hospital.
You were on my other threads for sure, when we talking about the Ehlers Danlos syndrome.

hi plum, I can only think that they will now monitor dd and do what's required for the pain.

I spoke to physio, about injections, and she said they numb the area, does is have the required effect or is it as horrible as it sounds?

I am reading that these jabs can give relief, but also reading scarily that they don't or make it worse.

For dd she had general anasthetic and had any fluid removed and then steriod injected,

the steriod gets rid of all the imflammed cells, although if it is a weight bearing joint, which hip is you will need to keep her off it for at least 24 hours (we always made dd stay off it for 48) to keep steriod contained in one area

I know for dd the pain was away almost immediately, her injections lasted her about 6 months to a year,
but as I said since being on the methotrexate she hasn't needed any, well she got one injection on a joint that was already swollen, she had to come off the methotrexate for a few weeks a while ago and almost immediately one of her joints swole up but thankfully it went down again and she was back on the methotrexate

And as you say it is so hard one day they are fine the next day they aren't, 7 years on I still get off days (((hugs)))

plummum, i understand. only to some extent tho i guess.

our physio said they numb the area with that cream first. not sure how effective that will be. then shot has cortisone and a anethsetic in it?

Oh sparkle, I'm sorry.

piratecat, dh has had cortisone injections and a long term anti-inflammatory in conjunction in the past and it has made a huge difference. Along with the orthotics, physio, intensive deep massage etc, he is a keen triathlete. It doesn't go away ever but he manages it well and is very fit indeed (cycles to work daily, does triathlons etc). He suffers mainly with knee pain but his cortisone injections were always in his hip as it's referred pain from there I believe. 6-12 months they last. His had cortisone and a local anaesthetic in them I think. Not pleasant to have done but quick and immediately effective.

dd has EMLA magic cream to numb her arm for monthly blood tests, it takes an hour to work and it is good at numbing the skin,

probably use general anasthetic on young patients with JIA because they have to go in a few sites to withdraw the fluid

Hopefully it will give your dd some relief I think 8/9 is a tough enough age for little girls without chronic pain into the bargain

Thanks Pirate and ShowOfHands. We are in the UK. They don't want to do an MRI until they have to as Ehler Danlos sufferers can have problems with anesthetics, which is why they are putting it off for as long as possible.

Pirate, could they give an injected local anesthetic before cortisone injections? I know it is still an injection, but it would only be into the surface tissue like an innoculation, and so not too painful, but it might work better than a cream? Still as Plum's "magic cream" works..... that is probably the way to go.

My DS at home now, begging me to let him play on Club Penguin!

My son has arthritis and has had cortisone injections a number of times. They are FANTASTIC. By the time my son had them he was barely able to walk a few steps. Had the injections and walked fine the next day. Try not to read too much about them on the internet. You will always find negatives if you look.

I don't think cortisone just goes into the surface tissue. When I'm watching the needle looks pretty big and goes in a lonnng way.

My son manages just on gas and air, however it is more usual to do them under general anesthetic.

sparkle, i wonder why they have to have anethsetic for mri? Or do you mean for something further that the mri might show up?

Yorkshirepuddings gas and air,these poor tiddlers. I amnot sure how far in they would hhave to go, the pain is in the top of the thigh. a\t the side.

That is a very good point that Yorkshire made, to work the cortisone must get into the joint, so that raises the question as to how the "magic cream" works to reduce their discomfort, as that, like a local, will only affect the surface skin surely?

Pirate, they want to give him a general anaesthetic for the mri as he will have to be in there for such a long time, and will have to be completely still. They quite rightly think he will not manage that! They will also have to put his head into one of the cages, as the vertebrae involved are so close to his skull, so I suspect they think he will freak out at that too. It has to be said however on this matter I just accepted their proclaimation that he would need a general, and didn't challenge it at all, which is unlike me.....

We have started the day pain free today. How about you?

sparkle, ladies morning.

I see what you mean about the keeping still. dd had from abdomento knees done (30 mins), and she was also feeling nauseous at the time. It was really awful having to get cross with her and tell her to keep still. Poor kid was in alot of distress and had tummy cramps at the same time.

today is a bad day, ihad hoped it would be eased today. By about 3 she regains alot of movement and is able to bare weight without flinching, but that's too late for school
She also had a flare up late last night which is less common/ The flareups used to be when she went to bed but they got less and less.
Waiting for a call back form the physio to see if she has managed to speak to the ortho doctor. I have emailed school i wish the head could confirm or call. oh well.

glad your boy is having a good day sparkle. x

Does calpol and/or neurofen take the edge off the pain for her? I know you have tried hot or cold compresses, and physio is fine to improve the chronic aspect, but it doesn't help you when she has a bad flare up. Surely there is something more they can offer, what about a codine based medication, just for the most extreme pain?

Don't worry about school, when the pain management is sorted for her she will catch up, and the summer hols are coming soon. The Head should really be in contact with you, and seeing if he/she can facilitate your dd's return to school in any way. It might not be possible at present, but they should be offering whatever support they can. Can you contact them again, maybe her teacher directly, so your dd can do some bits at home with you? My ds's school have been brill, but I did go in and lay it down to them in terms of what they have to do, and how they have to manage and protect him.

You must be shattered coping with late night flare ups, I really feel for you, I know it is hard enough to cope with anyway, but when you are exhausted too, it makes everything feel even more of a challenge. Have you got a friend locally who can come and sit with her while you go and have your hair done, or go for a walk or something?

I hope your day is improving. I am off to school shortly as they are doing a fun run in aid of the local First Responders. My ds is walking the distance instead of running, or at least trying to, he really wants to as to use his words " I have to mum because they are always having to come to help me", I am so proud of him.

Rushed to hospital yesterday after ds had a fall at school and hurt his hip. I thought of you Pirate! Hope your dd has had a few better days.

(Ds is fine now, watching children's tv in the sitting room and singing all the advert jingles at the top of his voice!)