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.

Cars

Bladder and or bowel problems are pretty common in eds . Ds2 has eds 3 bar handwriting it causes no issues hypermobile he is just bendy

But he has bowel problems weight loss constant loose montions . Was told his bowel is loose and they see a lot of it in kids with hypermobility/eds

Me I intermittent cath 4/5 times a day . Intermittent cath us lot less risk of infection than a perment cath more discrete as well .I have no feeling in my bladder at all so I have to empty it

Thanks for the advice Sparkle and HumanCatapult. I wish DS3 would crawl, but he has never ever tolerated being put on all fours and just flips over immediately. I think this is partly why his mobility is out of sinc becuase he completely missed out this stage. It's funny...I have 3 DS's, none have crawled, all have bum-shuffled (late), all have been late walkers, but only DS3 is hypermobile. Paeds / physios think it's because of his sensory issues that he won't go on his front (has never lain on his front or tolerated "tummy time" either. Sometimes he stands at the bottom of the stairs and leans forward so that his hands or on, say, stair 3, but then he really doesn't know what to do and screams in fear.

zen - through repetitive practice when he is in that position at the bottom of the stairs, can you move his legs to show him how to lift his knee onto the next step, even if he screams a bit, with you with him, holding him would he begin to cooperate?

Cars - bladder training has actually made a huge improvement to ds' incontinence issues, although related to eds, he did not have the same ballooning bladder as your ds. However it might be worth trying the following, which ds did with his paed.

1. drink loads, (I know this seems counter productive but it encourages the bladder to fill and improve brain's interpretation of full bladder)
2. go to the loo and have a wee every hour, whether he feels like he needs to or not. If because of school/child care you can't manage every hour, then up to two hours, but at very regular intervals.
3. double voiding, so have a wee, then wait a good couple of minutes, and try to wee some more. This helps to make sure the baldder is actually emptied.

This might not help, but it is non-invasive, non-drug therapy, so we thought it was worth a try, and it has helped ds alot.

THC - how are you, how is that shoulder of your? and how is ds? My ds is doing ok, we were at the hospital this morning and he had put some weight on, so big celebrations all round. He also went and had an ecg ( the one with electrodes, not the ultrasound scan) just to check out his heart stuff.

Hi, zen1. How is your ds at pulling to stand? Can he transfer weight from one leg to the other to get up from being on his knees? Because if he doesn't have the hip, knee and ankle stability, yet, to be able to pull to stand from kneeling rather than from both feet on the floor in front of him, then I don't see how he's going to be able to climb steps for quite some time - so maybe working on getting up from sitting down and sitting back down again would be useful, first?

If he can already, easily, get from sitting to standing in a variety of ways, particularly including ways that involve transferring weight from one hip to the other, then I second SparkleRainbow's suggestion that you try to show him how to move his legs so as to climb up using his arms and legs (whilst simultaneously pushing his bottom up towards the next step (but watch out for nose hitting stairs if his arms don't respond appropriately!!!!), even if he initially protests quite vigorously (which he would - there's nothing more terrifying than having your legs moved about if you are putting all your effort into keeping your weight evenly on both of them!), because the problem may well be more one of co-ordination in this case, in that he doesn't have sufficient strength or stability to learn by risking making a mistake - you have to help him get it right first time, so that he then knows how to build up the strength to do it by himself. My ds1 learnt quite quickly how to achieve things if his body was physically put through all the separate stages required for achieving the task - all he then needed to do was to endlessly repeat the same set of little moves to achieve his aim until he'd built up enough strength and stability to do it easily. Oh, and he always kicked up a colossal fuss when being taught how to do a new thing - but it never lasted beyond the point when he understood what and why we were trying to do what we were doing to him! After that, he would be quite obsessional about repeating the actions again and again, with great pride, until his parents were really bored being made to watch!...

I also think it is still worthwhile perservering with trying to teach your ds to crawl, because I think the quickest way of building up the right muscles for learning to climb stairs is to progress from crawling on the flat, to crawling up ramps in soft play areas, to crawling upstairs, to using arms and legs to go upstairs or up hills and eventually to walking upright upstairs using bannisters to help, both feet on each step, then climbing stairs on alternating feet. Miss out the early stages and the later stages take quite a bit longer, given that different muscles are used in crawling to those used when walking, so different useful muscles are strengthened.

Basically, missing out stages is all very well if you don't have a problem with muscular strength and joint stability, but it is NOT really fine if you need to go through those stages to be strong enough to get on with daily life.

Hi All, I keep dipping in and out of this group, interesting reading your posts.

I am thinking of getting a private OT to assess the children and myself, we are moving out of the area, and I was assessed locally, the wait was so long, it is pointless waiting for the children to be assessed as we will be moved before that happens.

The kids were to have an appoimtment yesterday, we showed up and the receptionst told me I had the wrong day, got home and realised I hadn't, phoned the appoitment booking place at the main hospital as the clinc was outsourced to community and they were wondering why we hadn't showed up, I was so upset, we have to wait now longer for the kids to be looked at to see if the hms diangnosis is going to be eds like mine has changed.

Oh Tranquility, so frustrating but it happens, try not to beat yourself up over it. You will get it sorted eventually.

I am just about to post on disabled parents eds thread, regarding an experience at the dentist if anyone can help?

Have read your post !!!!

Sparkle, I will give it a try moving DS's legs next time he is at the bottom of the stairs, just to see if he can go onto his knees. I think I will be met with much resistance though!

rabbitstew, thank you for your post and helpful suggestions. It has made me realise that perhaps we do still have a long way to go as far as stairs are concerned. I have never seen him on his knees, and actually can't imagine him kneeling. I think if he was to be put in this position, he would fall straight back into sitting. He can get up easily and quickly from sitting, but always using the same method: he always sits with his legs wide apart and when he wants to stand up he kind of leapfrogs into a squatting position and stands up from there. When he plays, he is either sitting or squatting (squatting has only come about in the last 3 months or so). I don't think he easily transfers weight from one hip to another. When he comes down the stairs, he bears a lot of weight on his arms and kind of slides onto each step, using his legs to steady him. At a neuro appt recently, we were told that his muscles are very strong, but for the first time, when she examined him, I noticed that his knees kind of bend backwards when he stands and his ankles are even weaker and bend inwards.

As far as crawling is concerned, I've got to work out a way to get him to stay in that position. If I put him on his stomach, he immediately draws up his legs into the sitting position, such is his dislike. He hasn't been on his tummy or rolled over since he was 7 months old when I found him jammed against the side of his cot becasue he couldn't roll back again. It must have caused some sort of phobia.

Both my dd's have been diagnosed with hypermobility (dd1 only this week), both also have low tone, dd2 is struggling at school with sitting on the carpet (she slumps or lies down and tires easily), dd1 struggles more with pain. Both are on the spectrum.

Hi Marne, I don't understand what you mean by "on the spectrum", don't post on here much, do you mean Ausistic spectrum?

Hi Tranquility, yes Marne was talking about the autistic spectrum. Several of us on the thread have Dc's with hypermobility who are also on the autistic spectrum and there is speculation that there might be a link between the two.

I lurk on these threads so thought I'd better say hello

I've got fairly mild hypermobility but my BFs DD has full on EDS and Dyspraxia. She often talks to me about it because I can understand (to a very small degree!) what her DD (13) is going through, plus I pass on all the useful things I get from MN Unfortunately she's also just found out that her DD2 (18mths) has EDS too.

Zen, I think personally that there has to be some effect on the brain wiring as the laxity is everywhere else in the body, has anyone done any research on Autistic spectrum and HMS/EDS?

I and my oldest definatly have a form of Dyspraxia (undiagnosed) and dyslexia diagnosed with me, not her, mostly due to spelling. Both my children and myself have issues with tracking when reading also.

Hello Mrs Dmitiri !

Tranquility, I don't know whether any research has been done - I would love to know! I asked the paed neuro recently and she said that she thought there could be a link but because hypermobility is quite common amongst the general population, it would be difficult to establish whether they were connected or it was just the case that a proportion of people with HMS would statistically also have ASD.

There is dyslexia and dyspraxia on my DH's side too, so I am also inclined to think that there is some kind of 'wiring' issue.

Hi, zen1. I seriously doubt your ds has strong muscles all over (how can he, if he isn't exercising them climbing stairs, etc????), so the neuro describing your ds as having strong muscles is unhelpful, except to the extent that in the very general sense it means he is highly unlikely to have a neuromuscular disorder (ie a problem with the muscles themselves).

When ds1 saw a neuromuscular specialist (not the same thing as a neurologist, but someone who has more detailed understanding of the muscles themselves...) and the specialist physio she worked with, they tested the muscles around his hips, knees, elbows, shoulders, neck, etc, and there were very specific areas of weakness in an otherwise normal profile which, rather unsurprisingly, coincided with the areas of greatest hypermobility. The weakness followed a pattern they had seen before in children subsequently diagnosed with extreme hypermobility. Basically, you may have perfectly normal muscles, but they are certainly not going to develop into normally strong muscles if you aren't able to use them because your joints are too loose for you to get the stability to exercise them in the first place (and maybe your proprioception is such that you don't get good feedback as to whether or not your attempts are really working, making it hard to gather the will to perservere without a bit of assistance) - and hoping normal daily activity will cure the problem is a bit of an optimistic hope if your child cannot indulge in "normal" activities, yet... You need someone to make more effort to work out which muscles are being used inefficiently or not at all and which ones are being overused so that proper help can be given to strengthen up the muscles that need strengthening and teach your ds to use his body in an appropriate way and not in a way that is inefficient, ineffective and harmful in the long term.

My ds1 used to stand (holding on) with his knees bent backwards if you put him in a standing position - basically he was locking them back the wrong way because he didn't have the stability around his joints to maintain a standing position any other way (or, probably, the proprioceptive awareness of what his knees were doing....), and the result was he was then immobile standing up - he couldn't even sit down, because his knees were stuck... and even once he was walking, for the first year or so he would adopt a funny stiff-legged gait, particularly when going uphill, as the only method he could apply to the task when not all of his leg muscles were sufficiently developed to walk more normally. Until the muscles around his hips were a bit stronger, he also had a tendency to fall over sideways, which is not exactly normal in most children...

As for getting your ds into a crawling position - I guess he's getting quite old for this, now, but since I had to start out teaching our ds1 at 15 months old how to roll over and get himself to sitting, and his head lag meant he had to do this from his tummy (too hard to sit up from lying on his back and too hard for him to do this from his side at first), I was taught to put him between my open legs once I'd rolled him onto his tummy and basically teach him how to push himself backwards with his hands so that his knees bent underneath him and he ended up in a sitting position on his knees and then spread his legs out in front of him into his favoured sitting position. Sitting behind him with legs open stopped his legs just slipping backwards when he used his hands, because he'd back into me, until he'd worked out how to help his legs fold up in that position. From this kneeling position, with hands in front of him, we started, when he was about 17 months, lifting his body and bottom up to put him in the crawling position and encouraging him to put weight on his hands and would literally move his hands and feet in the crawling pattern, whilst basically supporting his weight and doing most of the work for him... it didn't take him long to start trying to do it himself - normal muscles do build up quite quickly if they are being used appropriately and the child concerned is confident that they can do the manouevres being asked of them!

As for pulling to stand - his weak, pronating ankles meant that he didn't really start progressing with this until he had piedro boots, which stopped his feet going out in a Chaplinesque sort of way. Once he did have boots it was again a case of getting him into kneeling, holding on to a table of appropriate height, then getting one foot out from under him and planting it solidly on the floor at the correct angle for pulling up and then physically shifting his weight onto that leg and hip so that he could pull up on it and bring his other leg up and onto the floor in a standing position. We also physically manouevered him to learn how to cruise along the furniture, because this strengthens the sides of the hips (by putting hands on sides of hips and sort of lifting them up and sideways to give him the idea of the action....). So I guess we really did teach him to go through all the stages other children go through in learning to roll over, get to sitting, crawl, pull to stand, cruise and walk, because each stage helped develop slightly different muscles.

Ds1 is now 7.5 and he really is very active and able to join in with all the things his friends do, but he wouldn't be in that position if it hadn't been for quite intensive help early on to get him moving and, in the last year, quite a lot more intensive help (or not so much help as commitment on his part to doing exercises every night which, when I tried to do them, I realised were actually extremely hard work!!!!!!!) to get specific muscles stronger, so that he stopped complaining about his legs hurting when he walked, etc. The good thing now, though, is that he does seem to have evened out his muscle strength sufficiently that he can just be active like a normal boy and maintain most of the benefits all the hard work has given him - because there is absolutely no way he would want to have to keep doing all the exercises he was given every day in the last year all his life!!!!!!!!!

Sorry about the extended essay!!!!!!!

Wow, rabbitstew, your DS has done brilliantly since you have had to work on nearly every gross motor manoevre to get him where he is now. It sounds like he's had very intensive input. My DS has been under the physios for just over a year, and they were seeing him every 3 months (although come to think of it, he hasn't seen anyone since April ) and he's also had hydrotherapy. We were given basic exercises to do, but they were mainly geared towards teaching him to squat and stand from sitting (haven't seen anyone since he learned to walk). We weren't given any idea about specific areas of muscle weakness though. You are right about the neuro. The paed referred us to rule out neuromuscular diseases, which I guess could be what she meant about him having strong muscles.

DS had the opposite problem to your DS with the head lag: When (before his refusal to be put on his front) we used to try tummy time at 3 months +, he could not lift his head up from the floor at all (head was on the top centile, so very heavy) and so would just lie face down, struggling to move. In the end, he learned to get into a sitting position (not until he was almost 2) from lying on his back and pushing up with his arms. I am going to try to get him into a crawling position in the way that you have described. I think he is strong enough to crawl now (just have to persuade him to do it ) then maybe work on the kneeling aspect.

With regard to piedro boots, our physio just told us to buy him some boots which support the ankle (I tried kickers and some 2nd hand piedros), but I found they made him walk really stiffly as they were both quite heavy. He walks much better in a pair of light trainers now, though I don't know whether we should still be using supportive boots or not. When he walks now, it is like watching someone whose joints need to be tightened up. He was sitting on the chair watching tv the other day with one leg stretched out in front of him and the other stretched up past his shoulder with is foot touching the back of the chair. Puts me to shame as I can't even touch my toes!

Anyway, it is good to know that with exercise there can be very positive outcomes and that your DS can do the things his friends can do

Hi, zen1. I guess your ds not being particularly low tone/hypermobile in his upper body helped him with the sitting up using his arms! Piedro boots made ds1 walk stiffly at first, too, and made getting his legs out from under him much trickier (we used to take them off when he wasn't walking or practising pulling to stand!) - but at least he could walk! Once he had been walking for a while, we stopped using them, but continued using supportive boots/shoes that supported the ankle well (and stopped getting physio for several years, despite the fact he clearly still needed it... it's so annoying the NHS appears to think it's acceptable to drop a child once it can walk, before it can climb, run, jump, hop or skip, or indeed walk with a normal gait, as though inadequate walking always results in the others within a year or two without any help whatsoever....). However, since his ankles just pronated more and more and he complained of pains in his legs and had a very odd, flat running style (no spring in his step), we started using Sohlis in the last year, which are just paediatric shoe inserts that you can put in any shoe. The hope is that one day he won't need those but will be able to rely on well made shoes with a bit of an arch in them, but they have made a colossal difference to the way he runs - they do seem to have helped him build up a bit of strength in his ankles and reduced the pronation, so that there is a little bit of a bounce to his run, now, and psychologically they helped, too (he thinks they boost his running, so therefore they do....). And, of course, they should stop the pronation getting worse (he is extremely tall for his age and grows very rapidly, so the amount of person his ankles need to support increases more rapidly than the average child!!!!!).

ps sorry about all the long messages - I can't help getting on my soapbox about this particular subject!

Don't worry about the long messages rabbitstew, I find it really interesting reading about others' experiences and finding out what helped and what didn't. As an aside, something bizarre happened today: DH carried DS3 downstairs as usual this morning, then came back upstairs carrying some stuff to put away. When he came back out of the bedroom, DS3 was sitting back at the top of the stairs smiling! When he noticed that DH had seen him, he scuttled back down again. We are assuming he must have come up backwards, but he's not attempted to do it again (that we've seen ).

Ds1 did that to us with backwards bottom shuffling... we were despairing of him ever learning to move when strange things started happening. When my back was turned, he would somehow manage to have moved from the middle of the room to the wall, yet he was never caught doing it. We started joking he was levitating! Eventually, one day a few weeks after the mystery movements, he did it in front of me. It did look very funny. He was about 17 months old and clearly all the attempts to get him moving had had some effect, albeit a rather backwards one that ended when he hit the wall!

ps many congrats to ds3 for making it up the stairs! Maybe one day he'll confound you all by walking forwards up them!

Just joining the new thread. I have dyspraxia, dyslexia and hypermobility. DH has Aspergers, dyslexia and hypermobility. DS1(5) has possible mild aspergers, hypermobility and some mild continence issues. DS2(3) has elhers danlos syndrome type 3 as a working diagnosis. He also has hypotonia and development delay. DS3(8m) has hypotonia, reflux and some extra bits of chromasones that we don't know what this means yet, still waiting for an appointment with genetics.

DS2 is really struggling with preschool at the moment. He really loves it there and the staff are lovely, really caring. He's so tired though and when he gets tired he starts falling over his feet even more than usual. He only goes 2 mornings a week and 1 morning at his sn preschool. I don't know how he's going to manage at school next year.

Hi, eliiejjtiny. Tiring out quickly is a big problem with a lot of hypermobile children, particularly the hypotonic ones, isn't it? Ds2 has another year before he has to deal with school, though, and will have better stamina in a year's time than he does, now, by then. What are your ds1's continence issues? My ds1 (7.5, eds type 3 and aspergers diagnosis, but also very mild) still wets the bed every night and occasionally (only very occasionally these days) gets damp pants. I think he's got some form of mild urge incontinence, as the trigger during the day appears to be coca cola or giggling!