7th Oct 2018 16 and feeling better

I have now moved up in the world -  from smoothie ignoramus, to the more experienced level of smoothie experimenter. A truly modern mum. Frozen berries, protein shakes, essences and nuts fill my kitchen for the elaborate creation of a nutritious smooth meal.

Elise is generally feeling much better. I say that hesitantly because we had one week out of hospital that was great - she was able to function, go to school part-time and managed some homework. Then Elise hit the panic button - her bladder botox was failing way too early and within a few days she felt she couldn't leave the house. :-(  That is me with a very sad face. This was not good, a full bladder botox (to relax the bladder so it doesn't spasm every few seconds) is meant to last 6-12 months. After 4 or so weeks it started failing, we don't know why. Maybe the muscles adjusted to the medicine.

One of the main problems is that as the bladder twitches, it develops like a "grand mal" spasm...it triggers off painful big spasms all down the legs, the back and arms - something the Urologist has never seen. Clearly damage to the spinal cord is so extensive around the lower back it, that the bladder nerves feed into it, triggering all the area to become painful, irritated and go berserk. Elise becomes very distressed, in pain and doesn't cope - not surprising. So another urgent text to the Urology department, another drop-in meeting with the Urologist, who is the loveliest man, a few jokes and another medication. So that is two more medications this month :-( that is another sad face from me.

Fortunately, the new med kicked in quickly and Elise has calmed down, thankfully... as it is very stressful for the whole family. The new med is mirabegron (Betmiga). Funny how things creep up on you, she now has 4 medications for her bladder. Since then, it has been easier at home.

Hot chocolate with dad at a "happening" cafe - Stuart of course is a "happening" kind of dad

Recent events in the last 3 weeks

• a week at the horse centre to complete her 40 hours practical horse experience (for her distance education subject of Equine studies). This meant in real terms, office work as Elise can't muck out a stable.
• a DEXTA scan - bone mineralisation scan which needs to be done every 2 years to check for osteoporosis. No results yet.
• youth (15+) chronic illness camp - a 3 day camp at Mt Evelyn run by the Royal Children's Hospital, with a medical team. Turned out to be good and Elise plans to go again. Elise was the youngest there but noticed that as many of the teens were sick and not growing properly, she couldn't tell. A "nice" bonus.
• first parents only weekend away for a break, thanks to Annie looking after the kids
• Elise's 16th birthday

Birthday get-together

I am slowly wading through an inch thick of paperwork for applications, 16 is the magic number apparently for government funding. Hopefully, Elise will get basic financial support in case she can't work more than 15 hours in a week (legislation), which is likely to be the case. Funding is now very difficult to get so I am doing my homework. What will be, will be - so I am not worrying about it and leaving all in God's hands (except the paperwork).

School starts again tomorrow after term break, Elise starts her "first day" on Tuesday with a gastroenterology appointment. I am relieved about that as this week or so she hasn't been eating much again and not much is coming out the other end. At a guess, food is stuck half way and isn't moving down. 4 days of strong laxatives may help (no change yet) but it is an ongoing problem. Paraplegia is complicated.

17th Aug 2018 Gastroparesis and Lupus - Gut motility disorders

Well... I never thought I'd be feeding Elise mush. Mush, liquid meals and mush. I felt like Robin Hood with my big plastic bag over my shoulder, leaving the hospital taking the booty - lots of Resource drinks to tie Elise over to next week (it was heavy). For those who don't work at a nursing home or hospital - Resource drinks are for people who can't eat or don't absorb much.

Today the dietitian from the hospital rang to setup a special account so we can get them cheaper - $2.90 each normally - she is on 2/day. This reduced to $1 or $1.30 depending on the flavour. Elise likens them to strong cordial, so she dilutes it 50/50 with water. Apparently, peach and wildberry flavour are the go, chocolate is OK, the rest are vile (Elise's opinion after spitting out a coffee flavoured one, it was pretty bad). The drink is high energy,  with electrolytes and supplements. Low fat and fibre.

I am learning a new term - gastroparesis. It really is a general term which doesn't indicate exactly where or why Elise's GI system (gastrointestinal system) isn't working much. While we were waiting for a gastroscopy .... Elise on the bed and me looking smart in my surgical cap ... I asked the senior Gastroenterologist some questions. Actually I grilled him because it was my only chance. Usually we just see the ward junior Gastroenterologist and they pass everything by him for decisions - cheaper that way. Fortunately we will see him at clinic. Anyway, I didn't miss the opportunity for every question I could think of, he was very patient as he waited to cart Elise off to theatre.

Yes, the Lupus is probably the cause, Elise's Lupus seems to love the nervous system and the GI system has plenty of nerves. So nerve damage probably everywhere - stomach, small intestine, colon, esophagus. However, if the stomach works...most of it follows. The new drug - Motilium or domperidone is a dopamine antagonist - it works by blocking the nausea signals and stimulating the stomach. So far it is working, she is eating probably 50% of normal intake.

The stomach empties usually in about 1.5hrs. So for gastroscopies you usually fast overnight. If the stomach still has food in it after 4hrs, then you may have gastroparesis. Well, after about 16hrs fasting Elise still had some food in the stomach - definitely a problem.

So in comes the mush.

If you have a GI motility disorder, you have to have a low fat, low fibre diet. Small meals, about 5-6 times per day. Fat and fibre slow the stomach emptying down and increase nausea. Ideally a soft, mushy diet - lots of soup, liquid meals, nibbly things. I am trying to be balanced and are ignoring the low fibre idea somewhat - some fibre is necessary... otherwise the other end will have another problem.

Then comes in the protein shakes.

Limiting food with a vegetarian diet, means not enough protein. So we are experimenting with shakes.

When I carried my booty out from the hospital, I digested the news Elise told me. When she was in hospital school before I collected her, the maths teacher revealed that she had diabetes type 1 and gastroparesis. They had a great chat about medications... comparing notes and problems. God really knows when to reach out and touch someone.

In summary, Elise seems to be picking up. She has more energy, went to school for a full day today and managed, is cracking jokes and can eat. Things to rejoice about.

10th Aug 2018 When eating is tricky

Finally, I had a good night's sleep after several days of troubled tossing and turning. Pushing the send button... a text to Monash Children's Hospital, was a huge weight off my mind. Now it was someone else's problem and I could relax.

This morning Elise sat at the table, head down, strawberry in hand... "I'm just too full, I can't eat it mum." Mum... "well, maybe later you can try again."

Elise managed just two strawberries for breakfast, half a glass of fruit juice and a few water crackers till lunch. It was better than nothing. The rest of the day followed a similar pattern.

Eating, it just isn't that hard... but it is when you're always full, feel nauseous when you eat anything and if you push it, it may be returned to you.

So Elise has been in hospital for 5 days now, drinking lots of meal replacement drinks and answering loads of doctors questions. The problem is, with any serious illness, when you get one, usually more follow. One stressed system overloads another.

Reading the blogs, it makes Elise's experience sound just wonderful (and some of it has been)... but there is another story. A story of struggling every day to get up, to do the basics like eating, dressing, schoolwork. Then there is the other story of social rejection, stunted growth, brain fog that just rolls over her fatigued mind like a smothering blanket and hospital trips after hospital trips. Sometimes I just hope that life will stabilise... all our lives, so we can move on... more than survival mode. Maybe... we pray.

After 2 days of super sweet liquid meals, Elise started really perking up. I noticed it straight away when I arrived at the hospital day 2... the note.

 The note said it all. Rita...you are late :-(  Well, Elise is back, an organised list, dry humour, energy to write it and get the letters down on the page correctly and neatly. Something she has found difficult lately.

From a medical point of view, Elise's gut (stomach and probably small intestine) aren't functioning properly. Lupus damage, probably. Spinal damage, maybe. The food just isn't moving down and just sits around for a while, meaning that she feels full and can't eat. Sometimes labelled Gastroparesis (paralysis of the stomach), but it is too early to say whether she will own that label. Eating for Elise has been an ongoing problem since she was diagnosed 3 years ago, probably meaning the Lupus has a lot to blame for this.

She has lost quite a bit of weight and at the moment can't eat anything that requires chewing. Fruit, vegetables... nearly everything. So she's having very wet soup, puree fruit, saltanus, nibbling on crackers and the liquid meal replacements. For some reason, liquids are ok. This is typical of this condition, no idea why.

Yesterday she started a new medicine Motilium, which reduces the fullness feeling, nausea and apparently helps stimulate the muscles to move things along. It may not work, it is the first thing to try. On Monday is scheduled a Gastroscopy to check is everything looks ok. Hopefully by then she will be feeling a bit better.

So that is where we are at, Stuart is taking her on overnight leave from hospital on Saturday down the coast for a much needed change of scene. Then back into hospital to see how things pan out. On a cheerier note, they are keeping her busy in hospital... hospital school each day, art classes and on Tuesday I think she got to paint one of the Hawthorn football club member's fingernail's pink. For everyone else, this was a "wow" moment but as Elise isn't really into football, she wasn't that thrilled!

Stu put together a little video of the snow trip:

https://photos.app.goo.gl/cUtS46ncp7bh8uoZ8

9th July 2018 Skiing for paraplegia

There is no holding back Elise, except for a tether ensuring she doesn't disappear down the mountain

Last night Elise arrived home around 11pm, a different kid... the words fell out of her mouth, no rushed out of her mouth in torrents... racing from one funny incident to the next. "The nurses were so funny"..."they were just like you mum, jumping on me, braiding my hair, tickling me, joking around... they were like a group of giggly kids!" 4 of the nurses were familiar faces, so you can imagine what went on....

DSR (Disability Sport and Recreation) teamed with DWA (Disability Wintersport Australia) to offer a 3 day Falls Creek snow camp for 8 kids supported by a full volunteer medical team. So Elise, having never been to the snow, borrowed her cousin's gear and prepared for the challenge. The new training and accommodation centre for DWA just opened in June, so Elise's group turned out to be the first users - it was excellent with full facilities for wheelchair access.

Falls Creek did not hold back, it snowed and snowed, it froze and threatened the chilliest weather it could muster. With 2 sets of superthin gloves, chemical hand warmers and snow gloves the pain was just bearable - Melbournian's do not deal well with minus degrees!

Sit-ski's can be pretty amazing, brilliant suspension with either one or two ski's and mini hand ski's for balance. Elise started off with 3 volunteer guides, it went something like this...

Day one:
one on the side on and off - to assist if needed
one on the back - to hold, ski and guide Elise
one following behind - to stop anyone running into her

Day two: - introduce the 2m tethers at the back
one on the side - for fun, encouraging words like "brilliant" and photos!
one on the back - to ensure she doesn't disappear off the side

Mark is an expert. For over 10 years he has frequented the snow to teach and support disabled skiers. Apparently, in his opinion, Elise was impressive - in his experience only 5 other people in 10 years have graduated to the tether on day two. More importantly though, she had fun ... especially mentioned were the exciting snow face-plants and accidentally skiing backwards down the slope (you have to go in an exaggerated s shape I am told so it is easy to do).

Elise is looking at the new DWA centre

Things we didn't consider:
1 Elise's manual wheelchair is too valuable to take to the snow, she ended up sharing a cheaper one for short transport to and from the bus. It isn't a giving environment and her chair couldn't be risked.
2 Going to the toilet with multiple layers of clothing on, is a mammoth effort for a para. It took 2 nurses and Elise a LOT of effort to disrobe then redress. Para's - consider alternatives.
3 Chemical hand warmers may be a necessity, as were multiple layers on legs
4 Two days is not enough... Elise was just warming up and she had to come home

Elise ready to head off for an adventure

Amazingly, the trip was only $580 for 3 days (included just about everything due to volunteers and subsiding) which NDIS paid for. There is no doubt that the "inclusive" social movement in Australia is having an impact - doors just open.

Early Monday morning (after a few hours sleep), we rushed around repacking for her 5 day hosp physio intensive. The new Aviary adolescent and rehab ward opened on Wednesday, so Elise again is trialing a new room in a new centre. Seems to be how she does things! Another bladder botox is planned for today and every other appointment possible is planned for the week. Yesterday, the Rheumatology report indicated bloods are still off but we will wait a little longer before further med changes.

6th June 2018 Routines and slight toe movement

Well, it feel like ages since I did the last post and as usual, I have plenty to say!

Elise is looking more like herself now as the steroids are lower

School, hosp. visits and exercise have now formed a steady rhythm. Some weeks are really busy and others less so.

A snapshot of last week of appointments:
Monday     
Hosp psychologist followed by
Rheumatologist followed by
OT/physio review
Pharmacy visit
Wednesday
Pilates by physio
Thursday
School meeting to assess curriculum, tutoring, physio
Personal trainer gym session
Friday
Gynaecology appointment

We fit these things around my other two kids activities etc. Thursday I had colonoscopy and gastroscopy, people for dinner etc Like everyone in modern society, life can be a bit too busy.

With this in mind, on Monday we had our first "carer" booked session - using the user friendly HireUp company, we booked a lovely young lady to take Elise to her horse riding sessions. It takes approx. 3 hrs return and that doesn't include the stretches afterwards, cleaning the wheelchair (it gets really mucky in the mud and the arena dirt floor), food prep and sorting of clothes/equip etc So Bonnie came at 11:30am as booked and had a lovely time with Elise.

I love going to Harkaway but all these appointments take it's toll. To have some time at home to catch up just seems wonderful... actually I didn't know where to start and on Stuart's suggestion, pruned the standard roses. The sun was shining and yes, it was a relief to potter and smell the roses until school pickup time.

So Bonnie is booked for 4hrs in a fortnight. HireUp is an online disability agency that charges a small booking fee so the worker has a higher pay. This is appealing as some agencies pay their staff poorly.

New brace for horse riding

The longer horse riding sessions of the weekend clinics (she attends approx every 6 weeks), are leaving Elise aching and sore. So the physio (who does her pilates), organised a trial of back braces. It always amazes me, anything with a medical stamp costs a fortune but the brace, beautifully constructed with multi-layers, fully adjustable, velcro, guaze and special breathable material was about $46.

Resistance training at her pilates session

Recent news!

Elise is now able to move one of her big toes, yes, it isn't massive but she can move it up and down or sideways a bit. There has always been a little flicker in her toe so often at night Elise practices and finally it is moving. As Elise said... just to feel the plastic of her AFO's or the top of her shoe with her toe ... simple pleasures! It is odd how sometimes people get toe movement back but nothing else, probably due to the position of the L5 nerve fibre in the spinal cord. Unfortunately, she can't feel any other flickers to work on :-(

Medical update
For the last 6 months the ds-dna (lupus marker) has been gradually increasing, from 99 at it's lowest to over 300 now. Last week's Rheumatology appointment was like this...

Rheumatologist... well, should we do anything? Is it significant? There are no symptoms.

Me... well, the ds-dna always co-related with higher Lupus activity in Elise. Anyway, last time (her big episode) there weren't many obvious Lupus symptoms as well (her symptoms were severe but not typical). She is flushed in the face every day now, that always happens when she is worse.

Rheumatologist... mulling things over... yes, agree, it probably isn't a good idea to let ds-dna go higher ... it did get up to over 3000+ last time (almost never heard of amount).... so what should we do?? we don't have much idea of what will work

Me ... how about we increase the Myfortic dose? Just a bit and see... maybe it will help

Rheumatologist... I could contact all the Rheum people (Victoria) and see what they think... they all know her you know

Me... true. How about we try increasing Myfortic first and if it doesn't help then we could put a call out

Rheumatologist... sounds good. We'll look at her bloods in 3 weeks, just text the Rheum nurse for results and we'll go from there


The Rheumatologist is great, we are in unknown territory and he doesn't make things up. So last week we put the Myfortic (Mycophenolate Mofitil enteric coated) up 180mg. A small amount to see what would happen. We are yet to see results.

For those who don't know, Myfortic is a drug used to suppress the immune system for people who have organ transplants.

To finish off.. here are some recent shots of having fun despite legs that won't work. 

Fun in the bay with the Anne and Graeme Byrne and my kids

16th Apr 2018 Pilates for paraplegia

2nd pilates session with Kirsty

I am learning, albeit slowly, that some things need a specialist specialist. Elise was referred to a pilates centre by an elite sports physio at a horse clinic. Well, if you are like me, I had no idea what Pilates was and why it was important.

So after emails to and fro, we organised an appointment with a pilates instructor (physiotherapist) at a relatively local centre. The first session was, well... disappointing. The pilates instructor was getting a chest scan so we were scheduled in to see a different but experienced lady. She may have been a great physio but she had no experience with paraplegia. Most of the session was spent fiddling around and trying to find equipment that would work. I didn't feel like going again but thought we'd better hold our judgement until we met the original lady we were booked into.

I am glad we did. Wow, did this other lady, Kirsty know what to do. Years of working in Tassy paediatric rehab meant she really knew what paraplegia meant....which muscles were weakening, which were overworking, where the pain would be, what positions she could manage.

Pilates is basically gentle strengthening exercises that usually use springs, balance balls, elastic bands etc. Elise's shoulders and neck are always sore, working way too hard to compensate for very little core strength.  Because Elise's lower trunk doesn't stabilise her,  she has to work her trunk, neck and arms much more to stop from toppling over ... a bit like sitting all day on one of those balance balls...the middle just wobbles. So pilates steps in, to gently work on strengthening what core muscles she can control, which isn't much. Add this to horse-riding and the two activities work as a team and are often done together for spinal cord injury people.

A half barrel sit-up - this reduced muscle effort significantly

Short clip of the half barrel exercise:
https://photos.app.goo.gl/wys2sDAGFEcsJc5t2

Short clip of an elastic band sit-up:
https://photos.app.goo.gl/c8bEdKo2vmW1MHc72

So now it is confirmed, a specialist is not enough. Unless they have experience in this area, the benefit is low. We have found a horse-riding trainer, pilates instructor and personal gym instructor who all have significant paraplegia experience. Still looking for an osteo and psychologist.

The funding via NDIS for allied health was generous so we are very blessed in that these are all free.

Health update
A 4-day school week was always pushing the boundaries a bit and as it turned out, way too much. Mid-way through term 1 Elise started slowing down, eating less, feeling off. A few weeks later and the panic button was hit - breakfast stopped, then lunch and after a few days dinner. Elise wasn't eating, was losing weight and feeling nauseated. At a casual glance, she looked OK but we knew she was slipping. Fortunately we have a hot line to the hospital and an action plan was put into place....school stopped, rest, rest and rest...very difficult with lots of appointments booked and an upset daughter. At a meeting with school, we organised a 3 day school week and dropping all unnecessary work. Basically trying to reduce workload by 50%. This isn't easy, planning yr10-12 on a part-time basis and maintaining her social needs yet still trying to graduate with her own class - hoping to pull it off but it may not be possible. I could pretend, but I am worried. Doing VCE subjects is hard, a lot of work regardless of the way you do it. I am still not sure how we are going to manage it and still keep Elise functioning emotionally and physically.

The auto-antibodies (Elise's immune system gone wrong) cross the blood-brain barrier and attack, killing cell proteins like DNA in the brain. Brain fog is a standard Lupus problem. A sick brain and a sick body mean that mental or physical stress eg. homework push a struggling system often into a flare. For Elise, this is life threatening.

A visit to the Rheumatologist today confirmed deterioration in her blood-work, the Lupus is clearly edgy. We have to be very careful.

21 Mar 2018 Lupus, Transverse Myelitis, paraplegia and NDIS funding

Work hard, save, then spend. I was brought up on wise words and much to my son's frustration, he has to earn his wants...save for his ripstick, work for his phone, help the family. Here enters funding, it is not natural for me. It doesn't sit well with me ... money for nothing, begging isn't my style. So I swallow my wise words and remind myself we live in a commonwealth - wealth common to all, and try and not think about it too much.

NDIS (National Disability Insurance Scheme) rolled out officially in Nov 2017 in our area, we were contacted just before Christmas and a meeting was arranged 2 Jan 2018 in a temporary NDIS building, very discretely. No contact numbers, address given at the last moment, reluctantly. Maybe spies are a problem?

On the very positive side, without the new government initiative of NDIS we would have to self-fund, like many before us...unless of course, you are under TAC. So we are very thankful, albeit apprehensive of how the fledgling system works.

Yesterday, Elise, Poppy and I spent an hour with a Prothetist to create moulds for Elise's lower legs... new orthotics are needed (or Ankle Foot Orthotics) to reduce muscle/limb contracture and deformity. Not using the legs means that the long ligaments tighten and force the feet into an abnormal permanent position, something to avoid. NDIS stated ~$450 for this custom item, the Prothetist flicked through our NDIS plan...who nominated this amount? It costs $2800, to be replaced every 18 or so months.

 

NDIS plan sample - AFO's listed plus an adapted clock! Wrong button push from the NDIS planner.

Today has been a very frustrating day, the government kindly help but then make things very difficult. We have been allocated way too much for personal care/social inclusion and way too little for necessary things like a pressure care mattress. It is inflexible, so now we left wondering what to do. Stuart thinks we will have to contact someone higher up... hmmm.... not my style. At this moment, Stuart is looking up details of the Disability Services Commissioner.

The NDIS meeting was a new experience, government style. They were polite and sensitive but nearly all the allocated time was spent answering a mostly irrelevant lengthy online questionnaire... the lady was very apologetic.

Can she stand up?  No...she is a paraplegic
Can she walk? No ... she is paralysed
Can she button her top? Yes... she is only a paraplegic, not a quadriplegic
Can she feed herself? Yes... she is only a paraplegic
Can she handle money? Yes ... it is only paraplegia
Can she save money? Yes ... she is sensible, it is just her legs...

Then there was my question... do you know anything about paraplegia? ... "NO."

I felt sorry for the NDIS lady. So we finished the questionnaire and it was clear the meeting was to be wrapped up. What about her needs? What about the long list of things required for a paraplegic? So we handed her our extensively researched plan and hoped it would be enough.

First page of our detailed plan

The thoughtful NDIS lady... "we will give you a great plan, you will be really happy with it. You really will."

So we left the meeting with out heads spinning, having no idea what we were going to end up with. Our detailed plan was very detailed, in fact, it took over a month before they rang us and said Elise's plan was ready to go. Then the delay in waiting for the code to open it online, through the MyGov portal. Then the next delay with getting the Plan Manager signed up, then the delay in more paperwork for each and every provider of services :-(   Necessary evils.

I am slowly working through it. Today I received our first delivery of continence equipment. A relief as one of our sets is 6 months old, yellowed and mouldy (despite cleans) - they are meant to be replaced frequently but at $6k/year we have held out for funding. It was an exciting delivery.

This year obviously is going to be interesting - paperwork, negotiations, meetings plus 2 kids doing VCE subjects and one still on readers. Be calm, patient, use a cheery voice ... self talk is wonderful, it is good for my limited intelligence and brings harmony to the family.