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.

Not sure how long wait will be, as with everything we will probably have to chase results but gp says she will let us know and go through them with us. Will not see the comm paed for approx another 3 months now.

We keep saying to ourselves that they are only testing to cover their backs and that they don't really think he has it. Somehow has made the wait easier.

Hi Spidermanspiderman - nice to have you hear. I would expect the blood test to be a couple of weeks, although some on here (Ariane?) had to wait much longer....if my memory serves me right. The thing about eds and bjhs (benign joint hypermobility syndrome) is that there is no yet, so dx has to be made by clinical examination, and differential dx (which means ruling everything else out which can be tested for) ,so you are right to not be alarmed at all. I am sure it will be fine.

Midnight - Yeah!!!!! No reason to assume he won't pick up the referral. I would say a general rule of thumb is about 6 months, or less, but certainly not more. Keepiong fiongers crossed for yes!!!!!

Bizzey - at dot to dot bruises! That is something I can relate to. Dry eyes, sore eyes, they aren't always good as explaining how they feel at the best of times. My ds is 8 now....I still have the cuttlery battle, but for ds it is eds related, we have the same problems with writing. By the way just cos we are not a divorce thread doesn't mean we can offer support!

(you need to use the square brackets [] for emoticons, not normal brackets, but take heart you are doing very well at this.....duck to water!)

Thank you sparkleyrainbow BTW in sentence.......can offer support ..I presume you mean ...cant..!!!! Juust as well i am only hypermobile and not hypersensitive !!ha ha This thread is begining to mean so much to me

By jove ..i think i've done it

Hi everyone, blood tests done now and not too bad, thank goodness. Now just the waiting
game with regards to his hypermobility. Next on list to deal with is hv. Who seem to have forgotten we exist at all. Appt on Mon to try and convince re camhs referral. If not it's time to convince dh to cough up and pay for private assessment. May be easier to convince hv to refer him on!

The amount of strain this whole process puts on relationships is unreal!

Oh spidermanspiderman i do feel for you... we all want answer's NOW and I don't think they ..dh.. underststand a mother's feeling/instinct not sure what it is but we all have it my ds1 was admitted to hospital with asthma attack a few yeas ago and when i said to him
i was staying the nite .."whoes going to have the other 2 then when i go to work......DURRR ....I am sure you will have many sleepless nites tiil results are throgh but keep strong!!!!!!

Thank you bizzey, will try to. Can't believe your dh said that!

Just glad I found your thread, have been driving everyone around me mad with talking about it all non stop . Reminds me of after having given birth how I had to tell everyone my birth story several times over.

spidermanspiderman i haven't been driving anyone mad with my comments because i don't tell them any of my problems...in my family, I am the one who listens and helps everyone else....if i was to tell my mum of my concerns for ds i would end up comforting her instead ..and i have not got it in me to do that right now..(u dont know my mum ..)..Iam not a good "opener upper" which is why this thread is good ,i can talk and no one knows me..if they knew I was worried about something ..ohhhh i would have too be ..omg mum ...say no more

ps ignore upper thread ..stupid new computor

I

just typed out a long post and somehow lost it ! i will try again later hope everybody is ok

May I join this thread? My DS is seven and although it's always been known he was double jointed we are now suffeering with more side effects. There is also a potential diagnosis for dyspraxia which we are waiting to get diagnosed too.

DS has other medical issues but he has had blood tests to test his clotting in the past due to taking him longer to recover from surgery. After reading this thread I think it could be connected to his hypermobility. Also for the last year he will get excruciating pains in his legs. I mentioned this to his consultant who upped his vitamins but it hasn't made a difference. Could hypermobility be the cause of these pains? He gets so upset by them and pain relief only eases the symptoms.

hello reindeer, sorry to hear your ds is in pain-hypermobility can def cause this, my 3 dcs all have eds and my dd1 in particular suffers from terribly painful legs. My 3 all have physio/hydro, orthotics for their boots and they have a lot of calpol/nurofen for the pain.

The physio did suggest an iron and vit d supplement for dd1 but so far like you we have not noticed that this has helped.It would probably be worthwhile getting a referral to a rheumatologist and physiotherapy if you can to try and get some more help for your ds.

It is horrible to see your child struggling and in pain, hopefully somebody else will be along soon with some more advice.

Bizzey - I am such a doofus...good job you are not over sensitive, you could have stormed off in justifiable huff. Of course I meant can't Sorry. rant away. I too love this thread because everyone on hear understands everything we go through..watching your dc in pain, not able to help, difficult relationships with drs, fighting LA for appropriate support...and ds' psychologist said long term illnesses for dc put immense strain on relationships, and many posters on here could write an essay about paternal denial.

Reindeer - as Ariane has said generalised leg pains, which can be really severe is adefinitely a symptom of eds/hypermobility. Vitamins will not touch it, it is a muscle strain, ligament strain thing, and the legs getting tired as everything is having to work so hard. I agree with Ariane rheumalotogist and physio referral is the way to go. My ds also has hydro, physio, orthotics, daily pain relief, a full time TA at school etc.

Ariane - nice to see you, have you been lurking, or not been able to be on. How are you doing, and how is the bump getting on, are you being able to rest enough....so many questions. x

hello sparkle, bump is getting on just fine-and has got huge! 28weeks now so not too much longer to go! Iam feeling exhausted (have put on too much weight and have gone from 9st to just over 12 stone now) lots of aches and paind and awful spd but iam coping.Caesarean will be at 37 weeks so that will be sometime in the week beginning 16 april.

I am getting married on 14 april-everything has suddenly all fallen into place and we couldnt be happier, it's a lot to organise though!

dcs all been really poorly so things have been hectic to say the least, dd1 in a terrible state, in pain and exhausted, ds wasting away unable to do physio or go to school as had such a bad chest/throat infection (thats why im on computer today as am at home for a change!).

hope you are well and that things are ok

Congratulations Ariane - two lovely things to look forward to in April.

My ds is exhausted too, he has gone to school, but he just got up and cried this morning. Have started his physio up again, after 2 weeks off due to pain and subluxes. The shoe orthotics are working though, so that is good.

Ahh I remember when I used to be 9 stone.....sighs and remembers distant distant past.

its awful isnt it that they wake up and are crying straight away I cant even get dd to go up again to brush her teeth she has to do them in the kitchen as her face just crumples at the thought of going up and down stairs.

DD also has started to refuse school on mondays-they are in mobile classrooms and mon the busiest day, pe, assembly, classes in main school so its back and forth and she cant manage it and is unhappy.Ive arranged with the teacher for her to miss pe as its the first lesson and she just cant do it.

glad the orthotics are working

Ds is so tired he was crying when I went to pick him up, and has been crying pretty much since, when I ask why he says..."I don't know"

Good evening all, ariane(hello) and sparklerainbow how awful for you to see your dc's in so much pain.I am begining to understand so much more of what my ds must be going through from these threads. BTW have anyone had problems with nosebleeds..????????/ did not think it was conected till i re-read threads on poor healing..wont go into N/B history unless it's relevant!

Hi everyone, sorry to hear about the pain for everyone's dcs. Must be horrible to go through.

Have been looking into everything with regards to ds and found may be connected to my developmental dysplasia of the hip, which runs really strongly in my side of the family. My mum, sister and myself all had it and my dd had also.

Hi bizzey, we have not had major problems with nosebleeds, but once has one will take days/weeks to go properly. Preschool had a bit if issue with last cold as were continuously cleaning up a snotty bloody nose - not nice.

Off to get a large now, felt c**p and a bit teary for no reason today. Think I've worn myself out and need a break. Always arrange too many things each week. Think ds has aspergers and so always have lots of playdates round to try and help with social skills and to help maintain his friendships. This always involves manic cleaning and cake baking on my part though.

Hi everyone, having a giggle after a pretty pants day.

Was round at ds best friend house today and the boys played really nicely upstairs in his friends room. Meanwhile us mums sat together enjoying a cup of tea and thinking how long we had dreamt of this moment when we didn't have to supervise every second of play. Anyway have just received e-mail picture of devastation they have caused to her wall paper. Ds (who really struggles to hold a pen and so therefore refuses to draw at all) and best friend have drawn all over the wall.

Feel torn between pride as he has actually managed to pick up a pen on his own and drawn something and shame that he has destroyed my friends wall paper.

spiderman DS once drew a perfect picture of a stick man on is door, we were too overcome with pride to tell him off! It's still there to this day (but he is old enough to know better now). I hope your friend can clean it off!

ariane and sparkle thank you for the advice, we are already under the care of physio for CF but our usual physio is on holiday and since I've found out about his pains being connected to his hypermobility I can't contact her! She could make a referral to anothere physio in her team. Does the hydrotheerapy involve a jacuzzi type pool as he will not be allowed to use them because of his CF. However I will push for a rheumatologist referral as he has started to get the pains quite badly again (he can be in tears with the pain and he's normally quite a tough cookie).

We are in the hospital for other treatments for the next two weeks anyway so hopefully we can get some support and referrals in place in the meantime.

Good luck on the pregnancy and wedding Ariane, April sounds like its going to be a busy month, good luck to everyone else and their little ones.

hello everybody, reindeer-my dcs hydrotherapy is done in a small heated pool at the hosp(very warm but not jacuzzi type) I cant really take them swimming myself to help them as they can't cope with the cooler water in a normal pool and go blue/purple very quickly and then feel quite unwell so the pool at hospital is great for them.

Has anybody ever had trouble during pregnancy with bursting veins ? For the past few months one in my foot/ankle keeps suddenly swelling up then popping leaving a horrendous painful bruise and last night i woke up in middle of the night in agony as one on the back of my hand had done the same and it was so painful.I did not have this with my previous pgs and i dont seem to have any varicose veins yet so Iam not sure why Iam getting it.

Hi ,,ariane5..i have had no expirience of bursting veins but terrible V veins .in fact my legs have not seen proper day light for over 12 years..?more.Deffo need to get it checked in case prob with b/p..i will be curious to hear yor results if ok

Everyone else i am beginning to feel like a mum who has that problem..munchans or something where they use their children to get attention!!!
Out of hours DR this mornig..prob with ds2 grommets.. go hospital Mon...ds1.RASPand skin prick test Tuesday...ds3(dx) doctors Wed..optician and dentist still to be fitted in!!!!

I have been listening very carefully to ds3's speach and am convinced it is to do with H/M as it is sometimes like slurred speech(not that i have ever done it myself) ,as opposed to ..??well i dont know lack of articulaton or is it EDS which he has not been formally diagnosed with

.Well thats my Sat afternoon chat/rant/moan/worry/sob story...Kids have got a film on and i am now going for long soak and pamper..I hope the film is extra long!!!!!

Hi everyone, hope you all ok.

Ariane I also think you should get checked.out. maybe call your midwife team - I called them about a hundred times during my last pregnancy - but they were helpful.

Bizzey I know exactly what you mean about the munchausen - actually got accused last night of this by dh as I was having panic over schools - actually told him if ds does not get into my school of choice here will be moving into my mums. Ds due to start in september.

We have also been discussing ds's speech as is also v slurred. I also think may be related to his hypermobility. He elongates words a lot. Thinking of speaking to hv on Monday and seeing if can get a salt referral. He has quite a good vocabulary when he actually wants to talk but only if its someone he wants to talk to and a subject he wants to talk about eg Spiderman bet he refuses to do anything but scream at hv though unless she came dressed as spiderman - that would actually be really good!

Hi all.. spidermanspiderman cannot recall(cant be bothered to go back and look) the ages of your dc's. is one going to 2'nd school in sept..interested you have used the word "elongates" as well. Mine always sound very posh!!!(the words you can understand!) we are under SALT but at school so i dont know really whats going on.

Found another thread earlier about Verbal Dyspraxia..any one come across it

Hi bizzey, I have two dcs, ds is 4 and dd is 2 in two days time. Verbal dyspraxia has come up in google searches for dyspraxia.

Have just had some good news. Ds swim teacher came up to me after class and said can I have a word. Had panic moment thinking they going to put him down a class or that he's done something wrong and I hadn't noticed. But no they are going to look into see if they have enough funding available for an assistant for him during class and that they think he would really benefit from it, if thats ok with me. Picking jaw up from floor still - someone looking into helping us without me having to fight OMG!