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?

hiya, how is your ds now?

I popped to gp today to update her, and also ask if there are any stronger painkillers she can take, but there aren't. Just thinks the side efects, like constipation are bad. I agreed, as dd really had a rough time in hospital after the morphine, with sickness. I aked if there are any stronger anti inflams but she said no.

Glad to have updated her tho, and i said a letter should be coming from orthopedics soon. dd had sat and sun mrning as good days. but back very painful since sunday evening. mornings are bad, as she is so stiff, and it takes about 2 hours for her to feel like she can move without too much pain.

Do you have time to let her start the day with a warm bath to ease the stiffness and pain?
I can't think f anything else that would help. I hope this morning has been a bit better.

We have been having an interesting time at the moment and I am not sure what to do. I have been called to school a few times in the last two days, ds has had pain in the side of his left foot, and then yesterday after one of these bouts of pain, he wet himself twice. He has always been brilliant with toiletting himself since he was potty trained at 3 (he is 7 now), so I think it is related, maybe pressure on his spinal column. I am going to try and get an emergency gp appointment when they open in a couple of minutes.

Sparkle, it could be stress, but it could also be the Ehlers Danlos affecting his bladder control. It happened to dd about that age; she had to go on medication for a while in the end until her bladder muscles grew stronger.

That is interesting Cory, I actually hadn't thought of that. I will talk to the gp about that.

We saw the GP this morning, she was concerned that both could be indications of pressure on the spinal column in the lumber region, so we spent lunchtime at the hospital getting a lower spinal x-ray. I got a stroppy response from the radiographers when I asked them to put a lead collar on his neck to protect his thyroid area. He has had to have so many neck x-rays they are concerned about radiation induced thyroid cancer. Honestly the filfthy look I got, you would have thought I had asked for something a lot more difficult than walking into the next room to collect a small lead collar, it appeared to be the same as asking one of them to chop a leg off or something! Still they did it, to humour a difficult mother!

GP has also referred him for councelling and is writing to spinal specialist to get him examined in the next few days/weeks, so we will see.

Hope your dd is having a good afternoon pirate. Off to google Ehlers Danlos and bladder weakness.

hi cory and sparkle.

What sort of meds was your dd on cory when she had theproblem with her bladder? Gosh, the Ehlers Danlos can contribute to may things can't it.

Sparkle, I am glad you managed to get your appointment today, and that your gp sounds on the ball. Standing our ground seems to be an art, or at least something that we have to focus on in situations which are hard enough. I am sorry your ds has had this to deal with.

DD is still not able to get into school this week. to see her now, or at least from about 2 ish onwards you wouldn't even think she has any problems at all. I will consider the bath, but tbh she cannot bare to have any contact on her skin with anything, even water is too inflammatory for her to cope with. It's a case of having to sit, lie or move into a position where she can try to control the extent of the flare ups.
The painis still in the same place but it has also moved up her hip now, noticeablt into a different zone/area which is interesting.

Tomorrow is sports day in school, which tbh is probably the most insignificant day to miss so far.!!

Hi Cory and Pirate,

Pirate, is it so much worse in the morning because she stiffens up over night, and then the muscles and ligaments have to relax again, or is it for some other reason? I know I am only saying what you are feeling, but to leave anybody in that amount of pain, never mind a child, is just not acceptable. Who have you managed to show the video of her flare ups too so far?

I wonder if the movement of the pain is surrounding tissue getting affected, tensing up or spasming. Poor girl. I am so sorry she is having to go through this.

I wouldn't worry about missing school at this stage, but having said that what about going in for afternoons if she is so much easier by then? She might enjoy seeing her friends even if it is just for an hour or so.

Cory, do you remember the name of the medication your dd went on to help with the bladder weakness? Or what type of medication it was? Don't worry if you don't I can ask the gp for an idea. I am so lucky with our gp's both partners are fantastic.

Hope you have better days all round today.

hi sparkle, she is stiff in the mornings yes, and if she tries to move she will get a flare up.

this morning she was not as bad, and by 9.30 i made the decision to go into school, as it is sprts day and i htough we could both watch it this morning.

Sge went and supported her friends for about half an hour, i told the office she was in. Then she got bad again and we have had to come home. I told her clas teacher and the head but they were majorly preoccupied.

The video has been shown to the gp, the orthopedics dr and the physio.

Pain wise they have just said it's partof the condition. Gp, as i said reluctant to give anything stronger.

My gues fo rnext stop is when we see ortho guy on july 7th, and we need to see where we go from here.

Sparkle, can't remember name of medicine, we saw the consultant urologist because she was wetting at school. At first he tried other things like cutting out Ribena and coke etc, but as nothing helped he put her on whatever it was. His take on it was that it almost certainly was muscle/ligament laxity caused by Ehlers Danlos, but there isn't a lot out there about it.

morning.

tried the bath idea this morning at about 7.30, but it didn't help i am afraid. Then i remembered that heat isn't the best thing to help a flare up. Yet ice cannot bbe put on the area either when she is having spasms.

i was hoping today would be better. She was great form about 4 onwards yesterday, active, moving and had ot be told to calm it down. It's the same at the end of every day.

oh well, what's another day off school. Felt fo rher yesterday tho, she badly wanted to stay with her mates in school but just coldn't. Crying and saying 'why is this happening to me mummy'. Not much i could say, except we just had to hope it would eventually get better.

Hi guys,

I am sorry Pirate she is really suffering at the moment, psychologically as well as physically. I guess 7th of July isn't that far away, but it must seem like an age to you. Sorry the bath idea didn't help. I am sure that the GP is right it not being good for her to have stronger pain medication, but it is just so upsetting to know our dc are in pain and we can't help.

My ds lost bladder control twice at school yesterday, got himself changed and sorted though. Bless him.

I am at my wits end really, but we carry on.

Sorry to hear that you are both struggling at the moment.

hi, thanks Cory, How is it going with you and your dc's?

We are off to hospital this morning to see if she needs help in the shoe dept. We saw this specialist about 18 months back who said as she wasn't really suffering and pain then not to interfere.

It might be time to think about that now. Good weekend, the best painwise for 2 weeks, but a big flareup last night. Yes we were active this weekend, but i cannot keep her wrapped in cotton wool and she had some fun for a change. There's no pattern to this, and she has had awful days after restful ones.

Oh poor thing, piratecat I think there is a lot to be said for taking her to the hospital at a time when she is really struggling, gives them a totally different perspective. Still remember the time I took dd up to see the rheum, the one who had said no wheelchair for fear she should see herself as disabled. So we left the wheelchair outside and dd crawled into his room. We had a new referral in a matter of minutes. And I was left muttering between my teeth "but I've told you so, all along" . Seeing is believing, as they say. Hearing somebody's mum tell you something is definitely not believing, not if you're a paed.

Both my dcs seem to be doing very well atm. In fact, difficult to remember that they have a problem- until it strikes again. But I think (hope) we are all getting better at living as if every day was an entity in itself and take the good times for what they're worth. At least dd is. Ds (10) is quite moody. Though I suppose that could be pre-puberty.

The "why me" is awful. There's not a lot you can say, is there, except, yes I understand it is hard, I wish I could take it away from you, but I can't.

We've not had too much of it in recent years, but that's more because of other sad things happening- their friend's mum died after a long illness and I think they could see that what their friends went through was actually a lot worse- but I expect it will resurface eventually.

morning all.

Cory I am glad to hear that your dc's are having a better time right now. Couldn't believe what you said about your d having to crawl into the appt .

We saw the footwear guy yesterday, we will try some insoles to help her arch, but as he said she isn't that much over pronated, so it may or may not have any effect. Worth a shot.
I then trailed her round the shops for a couple of hours cos she was having a good day. She has grown out of every summer item, we were laughing yesterday becuase it was one day weneeded to go out and look presentable and nothing fitted her on the bottom half.
We looked at shoes, kind of difficult as they have to be able to let her feet be supprted but suitable for hot days. Very difficult, as they have to be ableto take this insole in them too. Be ok if we were boots/ winter shoe shopping!!

Today is a shit day, but i am glad she had a good day yesterday. We didn't finish at the hosp till gone 1, and were and hour away form home/school so no point her going in. They are having arts all week in school so i am not to worried about what she may be missing.

Hi Guys
Cory - I am so shocked by your description of your dd having to crawl into the consultant's room in order for him/her to "see" the problem. It is shocking that we have to fight these battles in this way, and that there are certain medical professionals whose own arrogance prevents them from doing their job properly. As you say, for some "seeing is believing". I am so glad to hear that your dc are having a good spell.

Pirate - It is good to read that your dd had a good weekend and a good day yesterday, it is soimportant that they have some fun and get the chance to be active children when they can, isn't it. I battle with this balance for my ds.
I am so sorry today is a bad day, I am thinking of her.

What do the insoles look like? Are they really thick, and do they force the arch of her foot up?

We have had a good weekend, and a good day yesterday, no real pain, incontinence etc, so it has felt very positive. He was a little achy this morning,but he has gone off to school quite happily, and I haven't had a phone call yet. Fingers crossed.

oh good sparkle, am glad about the days being ok.

fwiw, my dd, (dad is a shithead, and has casued her so much emotional truama) began wetting herself suddenly at age 6.

I put it down to her not being able to cope with things, and my gp agreed. It was as though she regressed back to babyhood. She wet herself every wee every day for 3 months or so. At school, at home.

She said she just didn't know when she was going to do one, never felt the urge. I know my circs aren't yours but I did learn that sometimes the brain just switches off, when it's overloaded. It could be a phase for your ds, I hope so.

The insoles are 3/4 and have a thicker bit for the arch. I have to have them too as I developed plantar fasciitis 2 yrs ago.

It could very well be psychological incontinence, he is having to deal with so much. I would so much rather that be the reason than the alternative. I think one of the telling things will be if the incontinence returns when his foot pain/numbness returns. We will have to wait and see I guess.

Insoles that thick will be impossible to disguise in sandels and lightweight summer shoes won't they... that is so hard for your dd. Is the thinking behind them that is spreads the body weight differently across the foot, and that shifts hers weight on her hips further up. I am just wondering whether something similar might help my ds with lower spinal pressure if that is what it turns out to be.

I hope today has ended better for your dd pirate.

3/4 means form the heel to just in front of the arch. yes the spread into the hips will be different, and may just give her more strength and maybe in turn help somewhat.

Like i said, the incontinence came on really abruptly with dd, does your ds know when he needs to go, is he getting the urge to go?

opinions please.

I have the chance to go to spain next week to see my mum for a week. She's able to hlep me out with the flights, becuase it's term time!

I need a break. lol. wwyd? Should i tell the school. should i even go. i feel like i desp want to go, won't get another chance prob till next yr. if she's bad here she's going to be bad there, but at least we'd be with my mum.

hmm

I would definitely go. It is important for you to have a break too. She will be no worse there than here, and the medics aren't able to help her here at the moment. You won't get medical insurance cover for her condition probably though, although your European Health Card might be enough anyway.

I would tell school that you are taking her to her grandmother's to help with the caring for a week to give you some breaks and chance to recover. She is not going to be in school anyway, but you can complete a holiday form if they require. You do not have to tell them where your mum is, but even if they know, that is not their issue, she could be in bogner or the outer hebr, it doesn't matter where she is, she is your mum, dd's grandma, and one of the few people who can actually give you a rest.

Hope that helps....go, go, go....

(ds doesn't know he needs to have a wee until it comes out and he finds that he is wet, sometimes just a spot, sometimes a gush. The rest of the time he seems to get "normal messages", it is just once or twice a day it seems, and does seem to be linked to when he is getting this pain/numbness in his foot)Not sure what is going on really

hi sparkle.

dd having a really tough day today. grrr.

I realised her ortho appt with big doc is next wednesday, and I guess I should go, altho tbh i could put it off for a week. Pain relief wise nothing is going to change tho, even if he want's to give her cortisone it's not going to happen next week i doubt.

i am so tired i can't think straight!

what you say about the numbness happening with the incontince sounds like a kind of pattern. hmm

Can you go the week after to visit your mum? It will still be school holidays, and the flights might still be reasonable. I wouldn't cancel the ortho appointment, it might be weeks before they reschedule. I guess any cortisone treatment will take at least a couple of weeks to organise, you could ring up the ortho clinic and ask them if the consultant prescribes the cortisone injections how long is the likely to take to organise, as you are trying to organise a short break. Might be worth a shot, the worst that can happen is they say they don't know. Try and have just a few minutes to sit down with a cup of tea and catch your breath today.

I am having abad day today, ds is having a so so one. He woke up this morning with severe knee pain, making it difficult to bend his knee. He has gone off the school though, he wanted to go. On way to school I found out that yesterday he had a wee accident, but wasn't allowed by dinner ladies to go inside and change, they said he had "already been to the toilet once during lunch break" !!! Argghh. He is so accommodating that he sat in his wet pants and shorts all afternoon and didn't tell anyone, didn't even tell me at pick up becuase they had "dried by then". I have spoken to his lovely class teacher, senior support staff and the Head to ensure that this doesn't happen again. I have gone into school weeks ago and run a meeting with dinner staff to explain his condition and what they must do! What more can I do, it can't be that they don't know who he is, he is the only one in school wearing a rigid neck brace!!!!! Today I just want to cry.

oh sparkle, your poor thing, i know how bloody frustratiing it is when you feellike noone is hearing you, it just feels like they don't care. Glad you explained again, i hope they pass the message thru properly to the dinnertime staff, al of whom imo are still dragons.

what IS it that children are only allowed a designated amount of wees, i understand it in the ost part, but as you say he is wearing a neckbrace, and they should bloody know he has difficult circumstances.

Where abouts in the country are you sparkle?

I rang the ortho appts yesterday, to ask if i cancelled dd's appt when i would get another, and it woulldn't be until july 28th, so that's a no no. I will stick to the one we have. I checked flights but they rise steeply after that week, and becuase it's a fairly small airport some days are fully booked anyway. Never mind.

DD is home today, bad attack last night and just couldn't get out of bed again this morning without it going mad.

x

update, got another appt, after alengthy talk with ortho, who said even if specialist says thumbs up to injections that won't be for soem time.

so i am goinbg to spain, i just booked it!!!

dd is ecstatic, as am i.

Well done and fantastic news, I am so glad you are going. I hope you have a wonderful time. Maybe the weather will help to ease her a bit, will you have access to a pool so she can have a splash about? It will be really good for you to be able to let your mum take some of the burden for a few days. Make sure you sit out in the evening sun, and sip a glass of something nice. I will do the same this end and think of you! Is dd your only one, or are you going with everyone?

We live in Staffordshire, and are waiting for our re-referral to University Hospital of North Staffs Ortho department becasue of all that has been going on in the last few weeks. If I don't hear anything by mid next week, I shall ring the ortho surgeon's secretary and try and push forward an appointment. I was called up to school yesterday, paramedics called, because he fell heavily. He was fine in the end but he was uncharacteristically quiet and still for about 40mins to an hour. He would respond to questions when asked, bit very briefly and he was uncommunicative for the rest of the time. This is not like him at all. Then he suddenly became "normal" like a switch was flicked. What on earth was that about? His teacher, and main care worker noticed straight away - they are so super.Paramedics didn't really care as his sats were normal. Called up again today, but he was fine, just hurt his knee. That is three time this week, I think four last week, and I can't remember any further back. I have lost track of ambulances, gp appointment etc. I really don't understand what is going on. Would feel more reassured if I thought for a moment that the medics had a clue. My GP is fab though, it is just tnhat sometimes the NHS is like an aircraft carrier, full of thorough well trained personel and enthusiam and experience, just takes a bloody long time to turn around!