Health Services OT

[Alison C]

Hello Beth
OTs and PTs would find the latest book by Prof G, R Kerr, A Hakim et al very useful. they may find Brad T Tinkles latest book good too. If Emily is a child, the OT could phone the OT at Gt Ormond St hms clinic for general advice as there is little info out there re ot and hms. MODS CAN WE SAY HER NAME PLEASE?

One paper recently referred to the situation that many children with dyspraxia have hms instead. The ot is welcome to contact me vis the hmsa -I Used to be an ot and have a big interest in hms.

Twice a week -wow!

cheerio
Alison

[Alison C]

brad T Tinkle is in USA too. Jt hypermobility handbook a guide for the issues and management of eds hms type.

[Beth]

Hi AllisonC,
Thanks replying! I thought the Graham book would be helpful to both OTs and PTs but hearing from someone who knows is helpful. I would love to have something other than material I have printed off to hand to the OT and PT so they have a bit more to go on. I feel bad for our OT - she is so motivated to help my daughter (almost 12 yo) but she is realizing what a job it is going to be. This past week, she was hoping to add a bit of weight to the exercises but found that Emily couldn't even use an air filled ball because her shoulders were so unstable. So, now we just have some very basic isometric exercises for her shoulders, elbows and wrists, as well as, exercises with putty to work on her finger strength. She is very willing to learn about EDS, but already has a good understanding of the underlying concepts - avoiding injuries/dislocations, carefully building strength, good posture, extremely cautious with weights and resistance. They are also working on some ways to help Emily shower, eat, etc. We are trying some different things until we find the best solutions.

Twice a week -wow!

Did you think twice a week is too much or too little? We have only just completed our 2nd week of OT and will start PT 3 times a week, so I am a little concerned that it might be too much. Tuesday Emily had water therapy then OT right after and was exhausted. It is convenient to do it all at one time since we have to drive 45 minutes to get there, but it was a bit much for her! The plan is to have frequent visits at first to get the ball rolling, then the visits will taper off as we can make more progress at home. She has deteriorated so much so quickly that I welcome the intensity - we will do whatever we can to get her strong again. But I also know that too much of a good thing can be counterproductive.

Regarding Dr TInkle - we actually have just been referred to see him! We saw the rheumatologist at Cincinnati Children's on Monday and she is referring us to his EDS clinic. I am very excited about it! Hopefully we don't have to wait too long to get in but we are grateful just to be able to see him.

Thanks!
Beth

[Alison C]

For UK OT provision, OT twice a week is unusual ie you usually see an OT for once every few weeks and then follow treatment advice at home, and then every few months or are discharged for a while.

See how your daughter goes with the therapy schedule. Hydro certainly makes me feel stiff (even tho I am not!) and tired afterwards especially if restarting a new course of hydro. Even so, hydro for me is super!

Gt Ormond St physio rely on weights for their lower limb exercises. Maybe your physio could contact them as the physio there is a world famous advisor re physio for hms. GOSH focus a lot on lower limb work first before doing upper limb work in physio. OT here focuses on hand skills and use of putty for strengthening hands. Splinting is discouraged unless it is really needed. Pen/pencil grips sometimes help however bigger pens do help and maybe are more acceptable to teens!

Dr T went to the HMSA residential weekend this year and was a great success - I could not go this year. Have you read his book? Maybe it would be useful to read it before you see him.

Teen years are particularly challenging as you grow so quickly - bones grow faster than muscles/ligaments for a bit so it is great you have physio/OT to help during this phase. It DOES get better.

Try to focus on what she CAN do as well - I am sure you are doing this! I always kept thinking about what I couldnt do when a teenager (did not know about hms then) and wish I could have focused on what I could do well.

Cheerio
Alison

[Alison C]

PS GOSH physio exercise programme aims to have children with hms doing daily exercises with 5 pound weights on each leg - (2.5kg?) - and often children need to go to GOSH and stay for a fortnight's physio to build up their strength, stamina and balance and leave for home with this exercise programme of daily exercises and weights.

Alison

[Beth]

Wanted to post an update on my daughter's OT. We are currently finishing up our 3rd month of occupational therapy, transitioning to a home exercise program in the next couple weeks. It was very discouraging at first because, as I mentioned in my previous post, Emily couldn't tolerate any resistance at all and was so easily exhausted. They were working with her entire upper body - shoulders, elbows, wrists and fingers on both sides and that was a big challenge for them and Emily. But they kept trying various approaches until they found what worked and they worked so hard to be encouraging and to make it fun.

Within a few weeks, Emily was able to tolerate increasing resistance on the multi purpose machine they used (if only we could take it home with us!) and we started seeing noticable improvement. She is now able to comb her own hair after a shower, brush her teeth easier, on good days can open a bottle of water or can of pop and has actually cut her own food once. It was only one time and it was food that was easy to cut, but it was more than she had done for months! Her strength and stamina have definitely increased so we are very pleased. She is still subluxing - and occasionally dislocating - all over her upper body,mainly in her hands, but less than she had been. We would have been done with OT right before Christmas but we decided to take a little more time to focus on her hands since we haven't seen as much improvement as we would like. She still struggles with holding a regular pen/pencil and with playing guitar. She dislocated a couple fingers over Christmas and in joints she hasn't previously had dislocations in so we have talked about ring splints.

We will continue with exercises but are looking into silver ring splints as a way to protect her joints. The OT is checking into what our insurance will pay - not holding my breath that it will be good news on that front, but we will see. We talked about ring splints and adaptive equipment yesterday. The OT is recommending a few things after discussions with us - a rocker knife, a bottle/can opening tool, a utensil holder (for really bad days) and a beauty kit that includes long handled back scrubber, comb and universal handle that can be used with a toothbrush, razor, etc. She had more suggestions as Emily gets older and starts cooking, etc but gave us a good start for now.

Anyway, I just wanted to rave a little about how positive our experience with OT has been. I really asked for OT back in September only to get evaluated for ring splints and instead got everything worked on and my daughter is benefited greatly from it. I would encourage anyone to give OT a try - it has made a world of difference for my daughter!

[Dannie]

Happy Happy Happy!!

After 5 Years, 9 Operations, and Countless referals... Ive finally got myself a OT!!! And she is BRILLIANT!!!!

She came out to see me on Friday.. And she couldnt have done more to help my home situation!

Here's what she asked.

What is your condition,
How does it affect your day/day life
What can you do
What cant you do
How can we help

Well to cut a long story short, she has agreed to install alot of equipment.

I struggle to get in and out of bed - Apparently it is 7 inches to low, so she is going to install a bed raiser and 0 hoop to it to aid me.

I physically cant get in and out of the bath and at 19 its a bit embarrasing to have to wear a bikini in the bath so my dad can lift me in and out, so she has got an inflatable bath chair for me.

The walls in my house are rubbish and cant hold a hand rail so she is getting medway rails installed.

I live in a council property and have to climb 28 stairs to get to my front door, and they only have a right side hand rail on them.. Which i cant use because I have no grip or strength in my right arm.. So she is making the council install a left side hand rail.

Its taken some time to get them but now that I know they are there coming I am so happy!

I have learnt now to never give up if you need something.

Dannie

[dragondee]

Hurray, glad you got the much needed help at last.
Dragondee

[niccysearle]

Wow Dannie......sounds like you have got yourself one amazing OT there......make sure you hang on (gently) to him/her!!
It's so nice to hear when people have a good result that will help make their life easier....good for you.

[Purplesheep]

I had a visit from the council OT today and she was really good! I was so surprised when they called me last week, because I'd only sent of the self-referral about a month ago and was prepared for a least half a year's wait! I'd put quite a bit of information about EDS on the form and she obviously had read up on the condition as well (we ended up discussing Cherylee Houston on Corrie ).

She made lots of good suggestions and it looks like they will do quite a bit of stuff, including a handrail on the steps outside the house (I live in a bungalow, but it's on a hill and the steps outside are pretty scary even for non-bendies), quite a bit of kitchen equipment and a few alternatives of bed-lifts to help me getting out of bed in the morning. I am quite excited about it all, can't wait to get lots of shiny new aids! I didn't expect much from the council OT services, but it seems I was really proven wrong. OTs are fantastic

[star gazer]

Thats great news for you all, a bit like christmas with lots of shiney new things. It took me a while to get my head around the toilet frame because I felt a bit of a failure using it and embarrased when other people used the loo, but that only lasted a few days when I realsied how much difference it made to getting on and off the loo without falling over
enjoy all your new prezzies
star gazer

[Lonnygirl]

Hey everyone,

I love hearing the wonderful experiences you guys have had with OT's. I am an OT myself and currently looking into a diagnosis of HMS.( have my rheumy appointment next week!!!! AAAAAHHHHH I am quite nervous!) hope everyone here continues to find OT useful!

Lonnygirl!

[mami2four]

Lili just had her second visit to the hospital OT yesterday.

In her first appt she gave Lili some new wrist/thumb braces which are so much better than her old restrictive ones and she also had therapy putty and she looked into cutlery but didn't have the ones she wanted to try. So yesterday she had this cutlery set with really thick black handles that remind me of a hairbrush handle and they were fab, she still struggled but managed to cut through some theraputty much easier. So I can't wait till the oredered ones come in.

She mentioned something about proprioception because when she is doing something like the cutting, Lili has her elbows right up around her ears, her shoulders are all hunched up and her fingers are really clasping hard, she put some tubigrip over her arms and immediatly she was a bit more relaxed and not so hunched up. She said if they helped she would give her latex sleeves but that I should look into getting her a tight baselayer top as it might help her posture and help with feedback? This is all new to me so am going to have to look into this one. All I know is I can't touch my nose with my finger with my eyes closed lol.

The only thing I was a little concerned about was her wanting to give Lili a belt to go around her waist. Her core muscles are not too bad(everything else is the problem) so I'm not sure this is a great idea. It is like a long strip of blue material which has a rubbery side and a soft blue material side with a velcro bit on the end. She is going to contact GOSH to see what they have planned with Lili's physio and see how they feel about it. Obviously if she needs it then I'm fine with it but I'm a bit concerned that she'll end up being more straps and braces than child

Can anyone point me in the right direction regarding the proprioception thing please?

Thanks
Katie

[Lonnygirl]

Hi Katie,

Very simply, proprioception is the ability to know where your body is when your vision is excluded. For example the 'feeling' you get to tell you where your arms are placed. Children with poor proprioception may have a variety of different difficulties but one of them is to tense up and hold tightly to things in order to get enough feedback to be able to manipulate them.

Deep pressure can help with proprioception as you are being squeezed and gives a feedback to your body to tell you where it is. for example having a big tight hug! That is why a tight base layer might help by giving your daughter the feedback she needs to determine where her body is to be able to move more appropriately.

Hmmm I just realised I have been going on a bit so I hope this makes sense!

Hope the cutlery and all helps your daughter!

Lonnygirl

[niccysearle]

That was a really good description of proprioception.....and exactly what I do with the whole "tensing-up" thing!!