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BJHS/EDS group


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#1 Myprincesses

Posted 22 March 2012 - 11:50 PM

Not sure if I can create one. But lying here wide awake (yet again!) I thought I would as so often i find the same group of people addressing the questions related. We all seem to be fighting very similar battles.

As most of you know my DD1 Ayisha was diagnosed with severe BJHS at 26months. I was diagnosed the same day. She is now 5next month and going great. The fatigue and poor core strength are her biggest issues. She uses an electric wheelchair or kaye walker for community access as she tires so quickly. She also wears theratogs (our wonder suit) which provides support but more for pain relief (well so I discovered in the last 2 weeks). She starts school next year.

We recently moved to Sydney and have had a nightmare sorting out therapy! Long story as a few of you would already know. The icing on the cake was when the CH OT told me that she has no real issues with her fine motor skills. Which I replied 'it is great considering the hours of work we have put into therapy for her... It is a massive improvement on 6months ago'. She then proceeded to tell me that that isn't possible as kids with hypermobility can't improve their fine motor skills.... What the???? Firstly are you calling me and our previous therapists liers? And if we can't improve fine motor skills why come to OT then? Um and also.... I am an OT!!!! OM goodness. She then didn't even give me anything to work on at home... No that's not right. She did. She said in passing oh maybe she has poor shoulder control. No suggested exercises, activities or anything...

Then the PT told me that Ayisha doesn't need ramps at school next year as she won't be taking the walker or wheelchair..... So who is going to carry her when she is tired??? Um yeah. Think again.

Honey murcott.... Would you mind PM your OTs number for me. And does anyone know of a good PT who uses theratogs. I am very willing to travel if necessary. I need descent therapists!!!

Sorry for the vent.... Things are frustrating! People just need to listen.

How is everyone else doing? How are the kids? I hope things are going well.


#2 Cat©

Posted 23 March 2012 - 12:14 AM

I am so sorry you are having so many issues as well.

I get so peeved with EDS - from the point of view that no one seems to know what to do with us!! Gastro wise, OT wise, physio wise and paed / pain wise!!

Children get told that they arent in pain and to stop faking it, adults get told that it must be fibro or that they are just pussys and to get over it (funny that since there are like 100 plus of us with all the same pains - oh and yeah not to forget those several medical papers that say its common in EDS to get severe fatigue and muscle pain .....pity many of the medical staff in Australia hasnt read them yet! grrrrrr

You know my five have EDS, one has severe fatigue and also uses a wheelchair at 10 and probably will for life for longer distances.
I have EDS and suffer significant chronic pain daily and have or years.

Now looks like my DH may also have EDS! (that would explain the children having it quite badly).

Rhumy said that DH was hypermobile in several joints but he doesnt think its EDS as his skin isnt super stretchy (lol) dont you love these Rhumatologists who know nothng much about EDS but can still say its not it based on something that is not part of the essential diagnostic criteria! lol

Im pretty much over EDS lately and over the battles to get anyone to help my poor little guys. Poo is our issue recently, up to our elbows in it and not winning the battle.

Anyway sorry to whinge and whine! I hope you have more luck with therapists soon. We found that public therapists just didnt understand and we had to pay for private to get some resemblence of a service at all.

#3 itsaboysworld

Posted 23 March 2012 - 06:58 AM

Im finding it all a bit frustrating with Jakey right now too. He scored 8/9 on the Beighton Scale for hypermobility and has over 15 degree hyperextension on his large joints.

Its been recommended that Jake has a rest day at least once a fortnight from school as he is just so tired. He gets very emotional and frustrated that he cant run around and participate with his friends and no one seems to take it all very seriously.

Can I ask where to order theratogs from? I was going to apply for funding for it especially as now we are approaching winter, he finds them so supportive but I have struggled to find somewhere to provide them nearby.

#4 Myprincesses

Posted 23 March 2012 - 09:28 AM

Itsaboysworld- welcome to the group here. I'm not sure if you have been on our posts before but you have certainly found people who understand the issues surrounding BJHS/EDS.

I'm not sure where you live. But in NSW I am getting our new set of theratogs through Milestones Therapy. They are a mobile OT that specialist specifically in theratogs only. They try to work with therapists to train them in the use. However, they can come out to your house. They are a Sydney based service. They have a website and do delivery Australia wide. I am not sure if anyone else stocks them in Australia. Our last set was purchased direct from the states due to huge issues with the distributor at the time - let's just say they no longer stock them!


#5 Therese

Posted 23 March 2012 - 09:31 AM

Of course it's ok to start a support group in here original.gif  Once it gets too long, I will open another one for you in the same way as I do for the other groups in here too.

#6 HoneyMurcott

Posted 23 March 2012 - 09:38 AM

Hi All,

Bec - thanks for establishing a group. I was sitting a few nights ago drafting a post asking all sorts of questions about what I need to be thinking about to get ready for school next year. In the end I didn't post it. I couldn't get the tone of it right when our DD will only face physical / fatigue / absenteeism issues next year. Cognitively and behaviourally school is going to be right up her alley. But with the other issues I'm struggling.

For example how am I going to 'convince' the school about how challenging her BJHS is and how actively it needs to be managed? When people meet her they are completely unaware that she has any problems and when we tell them how much therapy she needs / how much assistance she needs to complete certain tasks / how long it has taken for her to learn to do something as 'simple' as jump everyone looks at us in disbelief.

When they see how capable she is on her 'good days' they can't imagine that on other days she can't get out of bed. I have no idea how on earth she is going to manage the repetitive task of learning to write? Her motor planning skills are terrible and on her bad days they are non-existent. The amount of repetition she needs to learn a new skill ..... well there is no way she's going to get that in a normal classroom...... so how do I manage her teacher's expectations about what is reasonable for her to achieve. AAGH!!! And what happens when she's too tired to walk from her classroom to the hall for assembly  unsure.gif

::I will now stop rambling::

I have just PM'd you the details of our OT. Let me know if it doesn't come through. Sorry I can't help on the PT / Theratogs issue. We use a public physio through our local hospital who is just fabulous - as was their OT who did our initial assessment. I'm so sorry you're having such trouble getting a good team of therapists established here in Sydney. You'd think with all the 'choice' out there in this huge city that would be easy but it's not. I wonder if you ring the Connective Tissues Dysplasia team at Westmead if they could give you a list of private physios that use Theratogs? Do you have an appointment yet with CTD? Have you started with your speech yet?

Cat - you have so much experience. Thank you for sharing all your knowledge with us. Interesting about your DH and the 'non stretchy skin' issue and the rheumy's interpretation of the diagnostic criteria. Our DD appears to have quite good skin - not overly elastic and she certainly doesn't scar badly. For that reason our paed questions whether she'll get an EDS diagnosis. But from my reading (and from previous comments from you) my understanding is that it's a spectrum. Our DD scores a 9 on the Beighton, has hip dysplasia and a family history of everything else EDS under the sun (migraine, severe varicose veins, brain aneurism) and yet she might be ruled out on non-elastic skin? Mmmmm. In the end if she doesn't have it of course that's fine but for long term prognosis and management I would like to know ....... particularly if there's a chance she has vascular EDS.  sad.gif

IBW- sorry to hear Jake is struggling with fatigue. I think a 9 day fortnight sounds like a good idea. With school for our DD next year I'm trying to get my head around how to manage fatigue. Lucky for us we're only talking about kindergarten.

Now must get back to work .....  wink.gif



#7 itsaboysworld

Posted 23 March 2012 - 09:45 AM

Sorry, should add I live in Vic, in the Barwon South Western region. Our service providers tend to have narrow ranges of recipients. There is Gateways for children with autism, ADHD etc and then there is Scope for children with physical disabilities and II but rarely any sort of crossover so Jakey tends to fall through the cracks a little.

He does have a physio program at school and we are going through the very lengthy application process via DHS for individual support packages, but there is a 5 year average waiting list for them.



#8 Cat©

Posted 23 March 2012 - 10:23 AM

Yes HoneyM, I think that Rhumy like many others just has no clue.

Many manifestations of EDS have no issues with skin other than
possilby a bit velvety. All my boys are velvetty and oh so soft, and super super thin skin, you can see all the viens through it on the chest, and head like there is little skin there, and the rest of the body the skin just looks a bit see though.
I have found a big difference between EDS suffererers, for example some are like my boys and have the unusual ears (pointy super large sicky outy, not well formed etc) and others have normal ears or mostly normal. Same with toes my boys have the whackiest toes, bent all the wrong way, some joined, hamer toes and some toes bent sideways, where as others I have talked to despite dislocating all the time have perfect toes! lol

So there are so so many types out there, and as yet no testing (except vascual and I think one other type) they do have a test that will pickup some other types of EDS but apparently its hit and miss and only picks up abput 10% of the EDS population so they ont use it as its so hit and miss.

the one good thing about the fatigue also is that it does get better with age, at least until around puberty then it can go backwards, then improves again, then can also go backwards again in the 30s onwards and that usually doesnt bounce back. My DS, when I look back at him and his photos etc he was just so so fatigued all the time - his face was so saggy and he had permanent ptosis. Now altough he still cant handle much walking he is much better than he was as a child. He stopped having the constant choking issues (only happens a few tiems a week now as opposed to multiple times a day), he has learnt to chew where as he couldnt at all before. He can walk without falling over - where as up till about 6 he used to fall constantly (he started walking at about 2 yrs of age).

So there will be some improvement, certianly not running marathons, but the fatigability should improve a little with age.

#9 HoneyMurcott

Posted 24 March 2012 - 08:36 PM

Bec - I saw your post in the FYOS section and was just wondering about the recommendations you've had for part-time schooling. Do you know how you go about negotiating PT school? Is there a Dept of Ed policy on it ('cause I can't find it!)? We will homeschool next year if required but our DD is such a sociable little girl she will be devastated of she can't go to school. She is desperate to go. Part-time school might be the answer.

Thanks

HM

#10 Myprincesses

Posted 24 March 2012 - 10:46 PM

HM- I'm not really sure of the process as yet. But I am heading to a session on Thursday night about starting school with a child with special needs in NSW. They are going to have people from the dept of Ed, catholic schools and independent schools there to discuss things like that. So will talk to them and let you know what I find out.

So far the therapist and school have not been particular open to the idea. They just keep telling m that school is a long way off and lots can happen in that time.... Doesn't really help with planning now though.

I have spoken o a few friends who are teachers and most recommend half days, but the issue is that she will then miss subject like HSIE, art music PE all the time ( mst schools do literacy and maths before lunch.) it is really hard to know what will be the best. She is also really social and is talking about going to big school. At this point we plan to see how he goes with the orientation program at the end of the year, but be ready to do homeschool if necessary.

The other option we are considering is distance Ed due to medical grounds.... Same as homeschool but you don't have o set the curriculum and you have plenty of support.

Maybe if we both homeschool we should set up monthly excursions together? That way they are things appropriate or our dtrs and they can have some social get togethers!

#11 HoneyMurcott

Posted 25 March 2012 - 11:32 AM

Thanks Bec. Will be very interested in the outcomes from the seminar.

DH and I have been wondering if the school would allow us to enrol for a 4 day week - Mon/Tues, Thurs/Fri. This would give DD Wednesday off to rest and recover. I suppose our hope is that then by Year 2 she'd be ready to go 5 days each week. We increased DD to 3 days at preschool/daycare this year to see how she'd cope and so far so good. But they are not all consecutive days so she has time to recover.

The thought of half days seems a bit problematic. For the reason you've mentioned - missing the afternoon 'subjects' - but also because we'd end up picking DD up at around 12:00pm, only to then have to drag her back out for the school run to pickup DS1 at 2:30pm and given the parking situation at our school she ends up walking about 300-500m to complete the pickup. Not what we're looking for when she should be resting.

Our DS1 is in kindergarten this year and looking at his week there is a lot of time spent on activities that our DD could 'afford' to miss. Scripture, dancing (can't see DD managing that especially considering it's done outside on concrete), library (I religiously take the children to the library every 3 weeks and have since they were born so it's nothing new and DS1 finds it a huge disappointment because he can only borrow 1 book!), release from face-to-face and of course the fact that the final session is pretty much a write off given Kindi kids are so tired. Our DS1 often mentions they watched an episode of something from ABCKids on the smartboard or 'played sleeping lions' (ie. they lay on the floor with their eyes closed!).

So I'd love to do some influencing over the class schedule that DD has - having a few more of these sorts of activities on the Wednesday when she might be absent ...... but that's unlikely so it will be more about filling in any gaps at home on her day off.

My other thought is that without time off from school how on earth do we fit in her therapy? She's still going to need physio / hydro / OT. I think we'll get a temporary 'leave pass' from speech by mid-year but I'm sure she'll have to go back when it's time to start working on the 6-8 year speech milestones.

And yep we'll be in for catchups!


#12 HoneyMurcott

Posted 30 March 2012 - 11:50 AM

Hi All,

How are you and your children going?

We've had K's 6 monthly review with her paediatrician this morning. We left - as always - with more referrals. This time to both the Neurology Clinic at Westmead and for an MRI at Nepean. The time has come it seems to investigate whether she has CP. It seems there's always another possibility to explain all these challenges. Will be interesting to see what the wait time is on this.

Our paed advised we had hit the jackpot on genetics appointment at Westmead - current wait time is now 18 months but for some reason we got in with a mere 6 month wait.  tongue.gif Question for those of you who've seen a clinical geneticist - K has first appointment in late April. Is it worth getting updated / progress reports from our OT, physic and speechie?

Bec - how did the seminar on starting school go? Any tips?

HM

#13 Myprincesses

Posted 30 March 2012 - 10:10 PM

Hi everyone,

HM- didn't make it to the seminar last night. DH had to work (always seems to be the way at the moment). So have booked in for the the evening at Ryde on May 1 - will keep you posted.

Also. Just though I would say we have the team here pushing for another neurology review for A, querying CP again. I am against it. CP has already been ruled out. However they are not convinced.

Especially after her school developmental assessment. Got the results today and don't really agree with it. Yes she has a speech delay and obviously a motor delay. But now they reckon she has a mild/ borderline ID - how can they tell me that when at not quite 5 she can write her name and about 7 other letters, reading simple words, complete 24 piece puzzles, knows colours, shapes, count to twenty, knows how many objects there are, complete sequencing tasks, order by shapes, classify objects, build block construction, follow Lego directions, knows left frfom right, gives direections. I spokes with my mum (kindergarten teacher) and she thinks that A is ready for school on all levels. I am so very confused. Every school readiness checklist I come across she is fine. If it wasn't for her motor issues and needing funding for school she would have never of been assessed. No one has every expressed concers about her cog issues. And now to be told that. Is is really weird and has thrown me across the room.

Yes she requires repetition to learn and consolidate things. But she is certainly learning things.

Nw I am really worried about school as they certainly made it clear to me today that the area we are living in very affluent and therefore very competitive and that she is likely to fall behind at school as they move through the curriculum very fast( but is social enough to make friends - so don't worry). but we don't think she will get any assistance - despite severe gross motor delay.

I have to say I hate being in the defence force and having to move when we did. Everything was so good in wagga.. I hate it here! all everyone cares about is being above the bell curve... Very snobby. I just want Ayisha to have fun and do her best at school. But if she isn't going to keep up how is she going to enjoy it.

Cat- homeschooling is looking more like the option!

Also HM- with genetics. If you can get an updated letter from therapist always good to take, but they didn't even look at ours. So don't be too stressed if you can't get them.

Now off to get started on a homeschool preschool curriculum. Need to try and get Ayisha a bit ahead so she copes at school... Feeling a bit stressed.
Have a good night
Beck



#14 Cat©

Posted 30 March 2012 - 10:32 PM

Hm and Bec - we had the whole CP thing going on for years with Corbyn, as he too has many CP like issues. He also has an intellectual disability (about 64 IQ) and also the autism.

We had the MRI and all that and they ruled out CP (he was initially diagnosed as ataxic CP, then they said it was Myasthenia Gravis, then some muscular disorder then EDS.).

SO we have done the whole round as well!


Edited by Cat©, 27 April 2012 - 06:21 PM.


#15 HoneyMurcott

Posted 31 March 2012 - 08:50 PM

Crikey Bec you are getting the run around on school readiness. Was it the staff from the school going on about how affluent the area is and moving through the curriculum quickly? How on earth do they deal with the children that are not progressing at that speed? Chiildren with all sorts of learning challenges must live within the feeder area for the school and have to be accommodated the local public school. How infuriating!!! And did the school indicate she'd get no assistance?  ohmy.gif

What is A's preschool saying? They send children in that area off to school every year. What's their opinion?

No wonder homeschooling looks so attractive. With all the troubles you're having I'm rather glad to be living in the 'not so ambitious and not at all competitive' Blue Mountains. Any chance you can move further west? Amazing that the less attractive places to live might be infinitely more accommodating. I really feel for you.

Bec can I ask about A's speech delay I'm gathering it's just an articulation disorder? Not language? Does she have particular problems with sounds involving the soft palate "k" "g" "ing" etc? Has the speechie picked up any hypernasal speech? These were K's really problematic sounds so much she was reviewed by the cleft palate team at Westmead on suspicion of sub-mucosal cleft palate. Her palate is actually ok but like the rest of her body her soft palate fatigues quickly and hence the problems with these sounds. I'm just interested given K's similar challenges to A (although K is not nearly as severely affected as A)? Also not sure how far you are into speech therapy but we have a BRILLIANT app on the iPad / iPhone for minimal pairs practice which K can now do independently to increase her speed if you want a recommendation.

Thanks Bec and Cat for the info on CP. I suspect this is just one more hypothesis in a seemingly never ending journey of them. Our Paed always says to K "you certainly are a puzzle my girl but you certainly are a beautiful one'. Hah! I  wub.gif  our Paed.

Cat - families can certainly be a challenge. You poor thing. We're very blessed to have a supportive family although I've come to realise they can never understand the worry and time and planning that goes into having a child with a disability. But then again I had no idea either until I had one myself. I'm going to go look for that EDS logo now ...... and just had to say again  'hurray' for your boys being invested into cubs / joeys etc last week and this. I'm hoping K (and our boys) will join joeys in a few years. It's right up their alley and I hope will be a great confidence booster for K as I doubt she's ever going to get to do the ballet lessons she desperately wants to do.






#16 HoneyMurcott

Posted 26 April 2012 - 06:46 PM

Hi All,

Just checking in. Reviewed by clinical genetics at Westmead today and we walked out with an EDS Type 3 diagnosis. Bit surprised to have an actual official diagnosis after 4.5 years. We thought it would be another round of 'not sure / doesn't quite meet the criteria / refer you elsewhere' etc etc but it was apparently quite straight forward. Feeling a bit flat and trying to not think about schooling next year.

How are you travelling?

HM

#17 Myprincesses

Posted 26 April 2012 - 11:50 PM

Hi everyone- sorry I avn't been aroun for a while. Been crazy here! Ayisha turns 5 tomorrow so been trying to get her party organized whilst having two sick kiddies and my parents here.

honeymurcott- it s great to hear you finally have a diagnosis, even if it is a bit overwhelming. So are they still pursuing the CP line as well or just settling on EDS -III?

Cat- did you find. The logo? How did the shirts go?

Things are a bit better hear.spoke with preschool - no issues regarding learning, my mum (who is a NSW kindergarten. Teacher) has no issues with Ayisha's ability to learn dn here starting school next year. Got the speech assesment back- very high mild receptive and expressive language delay with articulation issues- however after follow up session speechy  thinks fatigued played a huge part to play with low receptive language scores and is no where near as bad as the devlopental assessment made out. The physio hs hd. Lightbulb moment nd discovered that she hs never treated a kid like Ayisha before and is doing heaps of research( with the little that is out there), has also discarded te thought f CP. so now just need to work on the OT. Will see what this week brings.

Had better head. Ayisha will be up early. So is so excited!
Ha a great week

#18 HoneyMurcott

Posted 27 April 2012 - 10:58 AM

Happy Birthday Ayisha!! Hope you have a wonderful day!! 5 years old is very grown up.

Bec- glad things are going in terms of school preparation and getting your therapy team working for you, not against you.

We will still have the brain MRI done in late May. It's a possibility she will have a dual diagnosis of EDS3 and cerebral palsy. She has some weird stuff going on with motor planning and reflexes so Westmead agreed it best to get it done. The other reason is one of my siblings had an arteriovenous malformation in his brain which caused a stroke at just 28 years and required neurosurgery to remove it. So given all the connective tissue and vascular stuff going on in my family a brain MRI is a good idea even without the cerebral palsy possibility. DD has had a cardiac echo so they are confident she doesn't have EDS4 but a brain MRI will help rule it out 100%.

Interestingly all of the information I'd ever read on EDS never mentioned speech (articulation disorder) as a problem. It's one of the reasons her paed has pondered cerebral palsy rather than EDS. However the geneticist yesterday confirmed that although you'll never read about speech disorders in the literature on EDS - from his experience and anecdotally - the type of problems DD has with speech are all a part of her EDS. Interesting.

Cat -  how are you and your boys going?

HM

#19 Cat©

Posted 27 April 2012 - 06:27 PM

Hmm potentially speech issues can occur in EDS, usually to do with the muscle and jaw fatigue, but obviously there can be many causes.

One of my boys has dyspraxia, and two have dysphagia, again related to the EDS. Although the dyspraxia might not be.

I do know that three of them can be very lazy with thier speech (as in from exhaustion) and have issues forming words properly, thats related to the EDS, same as they cant chew meat as thier jaws arent strong enough, and cant whistle or blow bubbles due to weakness in the lips.

So potentially a whole host of speech issues could be seen  related to EDS. Im surprised that it isnt in the literature.

My boys arent going ok, thanks for asking original.gif Im about to go and rest now - got the dizzies again (I get a lot of vertigo, which again is an EDS thing) sucks big time! lol
Ill come back and reply properly later, when Im more with it.

#20 Myprincesses

Posted 01 May 2012 - 10:47 PM

Hi everyone,

Thanks for the birthday wishes. Ayisha had a wonderful day.... Little miss Rapunzel.

Cat- how are you feeling? I hope better.

With the speech A is also very lazy. Hates saying long words and keeps sentences short. That was an issue in her developmental assessment. However speechy places her with a borderline to mild language delay compared to a mod to severe in the developmental assessment.... Hmmmm big difference. Certainly fatigue related as the language component of the developmental assessment was last.

HM- went to that transition to school seminar tonight. I took heaps of note and happy to email them to you. Most of it was really just about hw to enroll in the different school systems, and what questions need to be asked. On the whole I found it extremely informative, but more as I now have a contact for the whole transition to school. Didn't get a chance to talk about part-time schooling or distance Ed as it really wasn't appropriate. However, the contact I made was to talk about it more as well as the physical set up ,of the school. Will keep you posted after I talk next week.

What are you dtrs gross motor skills like (Ayisha's are severe delay)? Does she need rails or ramps? Do you have safety concerns due to falls? I would be talking to the principal or even getting contact either disability program consultant for you area (can be found through the department of education and communities). They help guide you. If it is catholic or an independent school.just contact them directly.

Also HM we should try and arrange a meeting sometime.

So things are on the up.

Cat- are you under any specialist for your EDS? Had the geneticist call in regards to Ayisha today (decided she doesn't need to see her but is setting up good ALlied health support- finally) and she wants to end me to. Rheumi that specialises in connective tissue disorders, recommend a bone density tst and potentially a review by an endocrinologist.i'm glad that maybe I'll get some help. Just not sure when I'll fit it in.DH has come home and told me he will be away for work for 6weeks from July - well what an exciting year!

Talk soon
Beck

#21 HoneyMurcott

Posted 02 May 2012 - 05:35 PM

Hi All,

Cat - How are you doing? I joined the EDSAUS Forum as you suggested a while ago - recognized your posts  wink.gif  I had some great replies about my queries regarding starting school so thanks for the referral. Thanks also for your thoughts and experience on speech difficulties with EDS. It echoes our limited experience with DD.  in all my reading no where did I read in the 'diagnostic criteria' and 'disease characterisitcs' about speech / language challenges. At the time I 'knew' that DD's speech problems we're related because her speech used to be so unclear when she was fatigued. But everything I read seemed to focus on TMJ issues etc - the physical deterioration, pain, movement - but not speech and language ...... So I was rather relieved when the geneticist said that lots of EDS patients have not only speech but language (including word finding etc) problems. It gives me an explanation for DDs issues.

Bec - so glad that things are on the up over in your neck of the woods. I would LOVE an electronic copy of your notes (or fax if that's easier). I'll send you a PM later tonight with all my details. And yes I would love to catchup IRL. DD will be following our DS1 to the local public school.

DDs gross motor skills I think you would classify as between mild and moderately delayed. On somedays they're non existent so she has to stay in bed and we carry her everywhere. However on the majority she gets around ok. Walking is good although uneven ground presents a challenge. Obviously she doesn't have the stamina your average 4.5year old has. Our not-quite-3-year-old DS2 can walk much further and makes a striking contrast. She can 'run' although limbs are everywhere and because of her pelvic instability she rolls around in the middle. She can FINALLY consecutive step upstairs (mum is very proud of that achievement after 2years daily practice), she can gallop (took 12months to learn), she can jump a bit (similarly proud of that) and hop once   rolleyes.gif . Can't skip. Can't consecutive step downstairs. Backwards and sideways walking are hard. Can walk on toes a bit. Can ride a tricycle but not a scooter. So a mixed bag really.

Her fine motor strength and stamina is really, really, really terrible. Her motor planning is woeful and actually frankly weird. I've been working with her on holding scissors in the correct way now for 2 years. Still can't do it. Yikes. And that's not even thinking about cutting anything with them.

Speech she has made incredible gains. She does not have problems with language / vocabulary. Actually I think due to her crappy physical skills she was early to speak and spoke in 7 word sentences at 24 months. Articulation has been her big stumbling block. We are a bit concerned she has disfluency / stuttering but we're fixing the articulation first and will then look into that.

But her personality and attitude and demeanour is just gorgeous.  wub.gif She's by far the easiest of our children. So emotionally steady even when exhausted. Shes also very determined which helps no end in getting her to do her therapy. In fact I've just told her to get off her scooter board and lie down and rest because she'll exhaust herself if she practices anymore.  biggrin.gif

The school is ramped nearly everywhere. One of the kindergarten rooms however is up a large flight of stairs but the other is ramped so I'll be asking that she be in that room. I'm currently trying to get my head around how on earth we deal with sport at school - she'll want to do it all - but her risk of falls / dislocation / fractures is too high.

Now must go and finish dinner. Will PM later.

HM

Edited by HoneyMurcott, 02 May 2012 - 05:37 PM.


#22 whatnamenow

Posted 02 May 2012 - 09:22 PM

Hi and hope i'm allowed to join your little group.  I have classical EDS and so do my son ( only very mild ) and oldest daughter ( pretty severe every joint affected, mitral valve issues etc ) We all got diagnosed when ellie got diagnosed 6 years ago.

HoneyMurcott i am Miss B on the EDSAUS forum and i'm the mod on that forum that approved your joining us over there.  Nice to see put 2 and 2 together.  I'm also one of the ladies that replied to your post about school.

Its not easy and we have actually changed schools several times trying to get it right.  We finally found the right school. ( well we moved to get into their catchment ) because this school has a fantastic attitude to PI kids.  Unfortunatly Ellie is now in grade 7 and the hunt for a high school is now on.

On other news for us the physio from montrose access told us that ellies hips are tethered?  and that aparently it was noted by the previous physio but not discussed with me.  This is only the outreach team that visit once every 4 months so no real help. One of the crappy things about living in a regional town. ( They are really good though at being the go between with me and the school and being with them means we can see the good rheumy 2 hours away at the sunny coast instead of driving the extra hour and a half to brissie ) Cant seem to find to much info on what they meant.
Anyone have any ideas?

#23 HoneyMurcott

Posted 02 May 2012 - 09:42 PM

waves.gif charlottesmum(missb)!! Thanks for your approving my membership over there and responding to my queries and welcome to our little group on EB. Sorry I've never heard of a 'tethered hip' ..... and we 'do' hips in this family. DD's first presenting problem was severe bilateral hip dysplasia at 11 weeks and for her it's the journey that never ends with next X-ray in August. I know what a tethered spinal cord is but can't help ..... and neither did google ..... on the hip. Sorry!

#24 HoneyMurcott

Posted 02 May 2012 - 10:00 PM

Bec - have PM'd you. HM

#25 whatnamenow

Posted 14 May 2012 - 07:20 PM

having a good cry tonight.  Spent the day at the ED because ellie woke up wiht left sided weakness.  They think she may have had a small brain bleed.  sad.gif  Thanks to Hervey Bay being so small we dont have an MRI.  Neuro wanted her flown to brissie for an MRI today but it was too late.  They managed to find a spot for a MRI in Bundaberg first thing wed morning so they decided she could wait till then rather than travel 3-4 hours south overnight.  provided she stays stable. So i have a bag packed for us both and I am trying to organise everything on a just in case basis.  Feeling pretty crappy over it all.




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