EDS Hypermobility No. 2

[SparkleRainbow]

We reached 1001 threads, so here we go with a new thread. This thread was originally started so we could get together and share experiences and expertise in Ehlers Danlos Syndrome, Marfans, Benign Joint Hypermobility, and any other medical conditions including connective tissue disorders which cause joint hypermobility, pain and all the associated symptoms.

ellie my ds who is now 8, has more stamina than he used to, but relative to the others in his class it is a different matter. It was only a few days ago that he stood and cried at hometime, notings was wrong, he had had a good day, but he was too tired to walk to the car, and we are allowed to park in the staff car park in the disabled space, so it wasn't exactly far! I get exhausted too, even at nearly 40, and even with me talking to myself saying come on you have to do this........! Your ds will get there, it will build up gradually, and if full time school is too much to begin with then the school will have to accomodate his needs, and come up with a plan of either some afternoons off, or some space in school for him to have some down time. Either way, don't fret now.

I find my children have different stamina levels, one I personally think has a form of adhd, was told she didn't when she was younger before diagnosed with HMS, seems to be all hyper then crash and be exhaused. The other is like on slow motion the whole time, but consistant. I can be quick, or slow depending on phsical problems and get tired due to stamina, so somewhere in between where my children are. It amazies me that I am so slow due to my mobility yet I am quicker at getting out of the car when I pull up, than my teenage child with ok mobility in comparison, who decides to take off her seat belt and get out of her seat when the younger one and I are closing our doors and walking into the house, it is as if there is something not switched on there with her, she is very academic and you would look and her and think she was ok, yet basic things like that, cleanlyness, toileting and other everyday things she seems so very young and un streetwise.

Anyways I am feeling upset, as dd2 has been school refusing for a week. She has the weekend complained of pains, and nhs direct said that as she is to see pead this week it is best to leave it to speak to them about it all. He suspects she has sciatic, which I had thought it was, I told her, however I kept back what causes sciatica, which is probably due to a lower back disc, as I have probably slipped a disc in my upper back recently, I am awaiting an mri and she knows I am not keen on it, as I was using it as a thing I am doing to prove to her you have to get past your fears (mine being mri and her's being school) only problem now being if she needs an mri, I have caused her a problem now with her and MRI's as she is the most anxious child I have ever come across, her list of phobia's and and anxiety is longer than anyone else I know, the next worst is my Mother who is major anxious person and shows it and makes a spectacle out of herself with it, followed by my ex and his Mother who hide their's as much as possible.

Don't panic about her feelings about the mri. You can show her pictures on line of the machines, ask the imagers if you can go a few minutes early so she can look round the room, and look where the images are sent in the computers....they imagers did this for my ds, who can't lie still, and is scared os small spaces. If this doesn't work, she could have a sedative or a GA to get her through it. Poor thing having the sciatia problem....I can sympathise!

She goes hysterical, she went nuts once at the dentist, I was always fine before the last visit, just to look in her mouth, she ran out screaming etc I had to pay £500 to have her sedated, as she said she had holes in her teeth which were adult one's that came through early and crumbly according to dentist who dealt with her, she needed two fillings, and to wait via nhs she would have needed new teeth the waiting list was so long.

She will definatly need sedation to get in an mri, she won't go in a lift due to claustraphobia, there is no way she will go in an mri, I have been in several times and have managed, although felt a bit panicley in the mri, and am ok with lifts and things like that, I know what she is like, she was the child who would never go to holiday childcare, or if you tried to put her in a play group when out in a shopping centre, you would get "please return your child is highly distressed" on the pager, she is not your average child who would be uncomfortable and just bear it, like I was or my oldest is.

As I say she has a double dose, her father went white and sweated out a canula once as she was so anxious about having it in, and well I could go on forever about my Mother who has to be on valum and plied with booze for a very short flight, where someone like myself has no issues with such things. The ex would be in a right state over spiders dd the same with them, I have to put a book or shoe on the big one's until they die or the house would be full of screams and panic, I can't go as far as touching them, I don't like to kill them I like peace more though , his Mother flapps and squeals if an flying insect is around, and dd is the much worse, the fear in her eyes and she screams and leaps all over the place, like it is going out of it's way to kill her or something, it is particluarly hard at the moment due to daddy long legs.

It is bad enough swimming around in your own issues, never mind everyone else's.

I do wonder if some anxieties are genetic, or at least a predisposition to be anxious. The mri sedation or ga, will be something that the hospital are used to doing for children, so it won't be an issue for her I am sure. Ds has a tendency to the hysterical whilst dd1 will just have to biggest eyes imaginable but get on with it...funny how they can be so different.

thanks for letting me know about that, I will ask for it if she has to have an mri!

I wouldn't mind, thing is I got first panic attack and loads of strong anxiety and phobia's in the past few years and there was a very good reason for it. I was pretty clam and probably least anxious of the lot before, and now everyeon seems to have labelled me as "an anxious person" in general now due to bad things happening that would make anyone anxious, I would love to see them if they had been in my situation not being anxious, blooming cheek!

I would love to read ds' notes, think they will say irritating parent who keeps asking questions

Some Drs do have an arrogance that can hardly be believed, as they say, walk a mile in our shoes and see how they feel!

Bumping the thread so Ariane can find us!

hello managed to find you all again!

hope everybody is ok i havnt had time to catch up properly but will try later when kids finally asleep.

We have had a hectic couple of weeks, ds has started school full time now so is extra tired but just about coping. poor dd1 has had a really bad ankle for a few days and has been hobbling around in pain, she hardly ever complains but its really hurting her and she is struggling.

apart from that things are ok, my dad is improving and his hormone treatment seemed to work now he has to have radiotherapy but its all looking positive thankfully.

I am exhausted but just taking each day as it comes its all i can do.

Hi Ariane5!

It seems like you have had plenty going on recently!

I have always said that any course you do will never be a waste of time, I trained to do massage, and was advised not to continue by my consultant years ago, so haven't.

The consultant I took the children to today advised that the headaches that the youngest has are due to muscle tension in the shoulders, so said I should massage them each evening, so I am putting that training to good use.

It hurts my hands and back a little.

The consultant was telling me that with this condition you have to at least twice the amount of exercise as a regular person to be regular person strength, the children came out quite motivated.

I was thinking it is great that they are mentally motivated to exercise more, the thing is i know it is good for you and everything, it is a very big as for us all to do so much extra exercise to be like an average person's strength... I didn't say anything to the kids about it, just made me feel a bit it's not fair about it.

It was all very well saying that the tennis player who has this condition and played with a strapped up knee at Wimbledon, and was probably in absolute agony the whole time can do it so you can do it is a bit ott really, it doesn't seem right to me that you have to go around being in agony all the time.

I am sure that prof Grahame said to me, that you shouldn't always push through pain, and I am sure in the pain clinic I was told push through chronic pain and not new pain, yet this guy said push through all pain. I did that and got really bad achillies tendoitis from doing that, so I am left really confused now as I was told if I had not pused through the pain I would not be as bad as I am?!!

This guy today has me confused now about after the meeting today, my gut tells me not to push through new pain.

At least he motivated the kids regarding the physio/exercise, which is really good.

rabbitstew DS1 isn't dry at night and has wet/soiled pants in the day once or twice a week on average. He's 5 and not sure if this is still in the normal range for this age. All the HV will say is "he shouldn't still be having accidents by now" and "didn't you read the leaflet I gave you" which isn't very helpful.

sparkle DS2 gets like that when he is tired. He just cries and cries, DH gets quite impatient with him when he gets like that. lol at your ds's notes saying irritating parent. I'm terrible for that and also for being neurotic. They probably have a special sticker on our childrens notes to warn the dr's!

tranquillity DS2 had a GA for his MRI. He was only 1 but there were much older children having MRI's under GA as well.

ariane I hope your DD feels better soon. Well done to your DS for managing full time school.

Ellie, my oldest has had issues with poo in pants, over the years we went to loads of people, were told all sorts, mentioned it today and was told it is a symptom of HMS, she needs to strengthen her pelvic floor with exercise, finally a definative answer to it when it is not as bad. She used to wake in the night having poo in her pants during her sleep nearly every night, she would get itchy and rub it everywhere, in hair all over bedding etc...

How I got through that and both of them bed wetting, which was fine as long as the nighttime nappies didn't leak, one child with major anxiety/phobia issues and abuse from the ex as a result of his breakdown and a long term acromonious divorce, and my own condition, I will never know.

It has not all gone away, it has just become more manageable as the oldest will use every toilet for a try between each lesson at school just in case, and manages herself that way at school, it is just at home and when she is not paying attention or stressed it gets bad again. I feel so very sorry for her if she has to live with this poo urgency issue for life, it must feel horrible to have no warning that you need a poo and no ability to stop it coming out for longer than a a minute, and I would get upset at her from time to time when she was younger and tell her off for the poo thing as it was so distressing, it didn't help that she has her Dad's bowels and goes three times a day, not like most people who go once a day.

Tranquility - Prof Grahame told me very clearly not to exercise though any pain, new or old, pain is your body'w way of telling you there is damage happening. We need to avoid as much damage as possible, to reduce the aggressive wear on the joints. So if an exercise hurts, he told me to stop, rest, and try a different more gentle movement instead.

Ellie at idea of a sticker on our kids hospital notes. Ignore your HV she is wrong. As a teacher I was still having children have occasional wee accidents when they were in year 2, so 7. Also being wet at night is very very normal for 5 year old, I think the statistics are about 1/3 of 5 year olds will still be in nappies at night. My very helpful HV told me not to even think about worrying about ds still being wet at night before the age of 8, as that was still classed as normal. As for EDS is does make continence an issue, by ds at 8 still has problems with it and he has a special bag, towel and wipes and change of clothes at school and a caare plan in place to support him. The description of the Paed's plan for ds which wrote out for cars is earlier in this thread. It really helped ds a lot and reduced the number of incidents. at your HV...not helpful and not right information.

Would anybody mind if I pull up a chair and say hello to fellow bendy people? DS2, 3.5 has hypermobilty, inherited from myself. It has never caused me any problems, but Ds seems to be suffering :(

He was diagnosed by a physio a couple of months ago, having been referred for very flat feet and femoral ante version. We are seeing a paed tomorrow with regards to managing what we think is pain and fatigue. Does anybody have any experience in managing this with 3/4 years olds? My main issue is mobility, he's shattered in the afternoons and a 3 hour sleep is not at all unusual. He is now too heavy to use the buggy or carry and I'm considering getting a special needs buggy, however I'm not sure if the paed will be a bit at this suggestion. I am fully aware of the need to keep him active, but activity is always followed by extreme fatigue.

Ds2 has days where he's perfectly fine, for example we spent 3 hours on the beach on Sat where he was running around without a care in the world, but we are paying for it now, he just wants to lie on the settee. Faecal urgency/incontinence is also a hurdle we are in the process of trying to overcome. DH is away until Christmas (forces) so I'm pretty much on my own alone with DS1.

Ellie - your HV sounds horrible. I think it is very common for hypermobile children to find it hard to hold on once they get the signal they need the loo. Ds1 still suddenly announces he needs a poo and then has to get to the toilet pretty soon afterwards, because he finds it really hard work holding it in, at age 7. Likewise with wees. He just can't hold on for as long as other children, just as he can't keep running for as long as other children - the muscles all over the body tire out more quickly, because they are supporting over-stretchy connective tissue and that is very hard work (and with the bladder, I think the stretchiness can also in some people delay when the signal gets through to the brain in the first place, or weaken the strength of the signal, so allowing the bladder to overfill).

Hi FreakOfNature, please pull up a chair, and have a nice .

My ds is my oldest, and he is the only one of my dc who has EDS. This meant that he was happy to spend many and afternoon preschool, having a nap, as his baby sister was doing the same. He slept 12 hours a night and three to four hours every afternoon for a very long time. I used a double pushchair until he was 3 1/2, then he got too heavy to push, so we would just do short walks with lots of rest. In hindsight a SEN pushchair might have been a good idea, but it just didn't occur to me. I am much more on the ball these days My ds is 8 now, and keeps going pretty well most days at school, but he is shattered in the afternoons and evenings, his body is just physically drained, although mentally he is still active. The mind is willing but the body is not capable.

Sparkle, that is exactly what he experiences, physical exhaustion but mentally still very busy. He seems to get so frustrated, throws himself around, bumps into things on purpose etc. He'll do this until he eventually crashes out on the settee. How did you know if your ds was in pain? I'm trying to figure out what is pain and what is just exhaustion. I don't want to medicate him un necessarily.

It's such a relief to share experiences, I often feel a bit PFB (or maybe PSB) when I say to fellow parents/family that he is tired and needs to rest etc.

When did your Ds get the diagnosis of EDS? I'm hoping the paed will refer us to rheumatology but I have to admit I feel a bit of a fraud by saying 'well he's tired all the time and often poo's his pants'...the GP looked very he's only 3 etc when I saw him. The physio has been excellent in terms of advice and Ds has insoles which, fingers crossed, will help somewhat. Thankfully she seemed to understand the condition.

My ds was dx at 20 months, which is very rare, but was done at this time because I was already dx and he was so flexible. When we picked him up as a baby, his shoulders would sublux, and he could almost literally slip through your friends. He struggled with rolling over, as he didn't have enough skeletal strength to push against, he would also sob which I thought was frustration at the time, but now I think was probably pain. He talked quite early, although not espcially clearly, so right from being about 2 he was telling me his legs hurt, even then I didn't really realise how much until he got older, about 5.

Some medical professionals are fantastic, some just don't get it, and unbelieveably there are still some rheumatologists who doubt that the condition exists (Guradian article by Prof Grahame) - they are unusual though. So I am not at all surprised that your GP seems slow" to pick up the links. If you have a physio who understands, you are well on the way to the support he will need. Ds has a fanastic physio, mine was dreadful, and had no idea what she was doing.

I have to say I have spent much of my adult life with friends and family looking at me sideways abiout this condition, even dh now admits, after nearly 18 years together, that he didn't get it in the beginning, and thought I was just a hypochondriac. That is something I find very hard to deal with, for ds too, in some ways it is an invisible disability.

FreakOfNature - we still used an SN buggy for DS2 for long walks in the summer, right up until the end of Reception. Touch wood, we only need it for shopping trips, when he finds it hard to cope with standing, waiting and browsing and generally doing what we want him to do (he has ASD). Having it has definitely meant we can do more with him, though.

And to all, I had my first physio appointment, yesterday. Have some pelvis and knee strengthening exercises to do, in order to improve my standing posture and I've been booked in for some hydrotherapy. This means I need to buy a swimsuit and bare my stretchmarks, which I've had since I was 10, yet still manage to be very self conscious about! I keep telling myself I've had kids, so i shouldn't let it bother me.

I've also had to make an appointment with my GP because he wants to talk to me about the letter he's had from the rheumatologist. I'll find out in a week what he wants to talk about.

Ouryve, see if the gp will give you a copy of the letter for your records. My gp automatically prints everything out for me, test results, letters xray reports. It is really useful to have. Can you get a swimsuit with a skirt bit to hide more? I too am body self conscious, so I can understand how you feel.

Given the demographic in the waiting room for my physio, I'm just going to have to suck it up as far as self consciousness goes. (And have a shave!)

And the doc who wanted to see me is the one who complained that he doesn't understand my accent. Should be an "interesting" appointment.

My referral for OT has come through, today. I'm becoming rather a busy girl.

Well we're just back from the paed, and just as suspected we haven't gained much despite an hour long visit. To be honest, I'm not sure if there is anything we could have gained. When I look at the overall picture of how HM affects Ds2 I can see that apart from management & physio, there is little that can done to make him better. Both dh and I are RGN's and we know that there are some things in life that cannot be cured and must be learnt to live with.

The paed did agree that a sn buggy would be appropriate and I would need to speak to the physio with regards to what is suitable. Could I get funding for one or do we order and pay for it ourselves? A Maclaren is out because it does not recline and we need a decent hood as Ds is sensitive to bright light when tired. Any ideas where to start?

I did not mention a referral to rheumatology, partly because again, I wonder what will be achieved and also because ds is having such a good day today it's made me realise that, perhaps it's not that bad after all. I may regret this on Sunday as we have a party in a soft play centre on Saturday - anyone else find them the bane of their lives?

waves sorry bit manic here

Ourvye ds3 loves hydro sadly only block of 6 but the team they are going out him down for another block just after xmas .

Ariane I am so pleased that your Dad is doing ok .And that ds is mangering school .even now ds3 gets tired

Not a lot her eother than the physios at hydro have noticed that ds does not actually use his arms properly so are calling his land based as they reckon so hypermobile that he holds them rigid to his body to help his core strength.

No news when on the house but can not wait asnd no news on when in at Gosh am wondering how long before i chase it up has been nearly 3 weeks

Just wondering do any of your dc's cry and whinge a lot? DS2 seems to do this a lot. I think it's because he is tired a lot of the time but I'm wondering if he could be in pain.