parentingcfs

Navigating adolescent CFS

What we think’s worked for our girl – so far…. November 26, 2013

Filed under: CFS Resources,CFS Treatments — parentingcfs @ 12:37 am
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DISCLAIMER: The following post contains anecdotal information and my thoughts. It is not meant to reflect medical advice pertaining to any other person.

For those of you who are only in touch via this blog, the news is good. Cautious as ever but good. As we come up to the 3 year mark of our daughter’s illness she is back at school once a week for 2 hours. This may not sound much but as she had been completely out of school for 9 months and barely attending for 8 months prior…well this is huge. And I smile about it every day.

I have so many things to write about pertaining to the last three years but this first post will only be about doctor – prescribed medicines that we feel have helped our girl get back to this stage after a terrible low point for several  months last year.

First, I would like to clarify that my daughter’s symptoms appear to me (and her BP doctor) to have all fitted neatly into POTS (plus PEM? or is that just part of the POTS for some?) ie clearly lack of vasoconstriction and hence inadequate blood delivery to the brain, gut and peripheries. What has caused the POTS is where there are disagreements globally. Clearly my daughter’s connective tissue is somewhat lax. Has it always been that way? Or have there been environmental contributors? More on that in the next post. She has the clicky joints common to hypermobility, but certainly not all hypermobile people are ill. And she belongs in an unusual but certainly present group known as ‘Stiff Zebras’ – ie they have symptoms of something known as Ehlers-Danhlos Syndrome but are  ‘stiff’ instead of ‘stretchy’. So many of the teenagers I come across with a CFS diagnosis are also hypermobile..it puzzled me that my girl wasn’t. It’s possible that her muscles stiffened to compensate for weak connective tissue in her joints….maybe?…..I know one doctor has mentioned it as a theory. (I remind you again that this is really just my ramblings!)

MEDICINES

So, taking the above into account, it is not surprising that the pharmaceuticals that have most helped our girl to regain at least part of her life are related to improving and stabilising blood volume and pressure. Florinef gave her 5 months at the beginning of Year 7 (last year) where she was attending school every day, doing very well academically though still unable to participate in sport. Most importantly she got to make friends at the start of high school here in Australia and those friends (and others from primary school) have been crucial to her well-being. Unfortunately, in May, Florinef suddenly stopped being ‘enough’ and she went rapidly downhill.

In November of last year our girl started on Midodrine (a vasoconstrictor). She takes a dose twice a day and it is very clear when the dose is wearing off as her fatigue and neurological impairment (usually first visible as irritability!) come back with a vengeance. She still takes a small dose of Florinef as well.

In our case, a melatonin dose in the form of Circadin has been an absolute blessing and enough to help her through the initial ridiculous issues with sleep. Without a dose she would be unable to get to sleep until past midnight, despite lying in bed in the dark from 8:30pm. It breaks your heart watching someone try so diligently to follow instructions..in this case in the form of good sleep hygiene..and not get any results…. I am so very grateful that Melatonin worked for my girl. She still takes it but also sometimes listens to sleep guiding meditations…and always listens to music. She has developed an ability to pick music that helps her sleep….

This is a good place to stop. There has been so much more than ‘medicine’ involved in this journey and all of it has been important but it deserves another post! (Plus I really must go on an ‘outing’ with the girl and get away from this computer!)

May your news be good news!

 

Possible timetable for high fluid intake for an adolescent with OI. October 12, 2012

Hi all

It’s a little difficult to post lately as we still don’t have any answers and our girl is missing out on more and more. She only leaves the house for appointments and to go with the family to houses of close friends generally. It’s sad but we haven’t given up. I feel very conflicted about how to continue using the current bandaid approach of western medicine  whilst combining it with the more holistic approach of so-called alternative therapies. Anyhow, I won’t ramble on about that just now but instead wanted to share something that may be useful.

The first treatment for a teenager presenting with OI symptoms is to increase fluid and salt intake. Simple to say, much more complex to integrate into the daily life of an unwell and hence unhappy adolescent. This year, thanks to the internet, I have been lucky enough to meet a few more local mothers struggling to parent this illness. We get together when we can to share ideas, recommend practitioners and generally work through the emotional roller coaster. One of these mums is a wonderful woman who has a daughter, now 20, whose life was severely affected by whatever this mysterious illness is. Just as her daughter got back on her feet, comparatively speaking as her life continues to be impacted by the illness, this mum’s son became ill. He is about to turn 12.

This mum has searched tirelessly for answers for her children. For other mums who talk to her, she is the most amazing resource and seems to keep an incredible amount of knowledge in her head! We are very lucky.

I continue to believe that communicating with each other and professionals is how we can help get this debilitating, cruel illness puzzle solved.

Enough introduction! I’m actually just here to copy and paste some practical ideas from this experienced mum. This is how she approaches the fluid intake bugbear!

“On waking, 200ml rehydrate solution immediately before standing up.

With breakfast and to take herbs, 250ml water/diluted juice. so we are on almost half litre before day is  starting.

We use measured sports bottles for the rest of the day, a 500ml and a 750ml. (have some really good ones we get online that flow wonderfully)

By 10.30, he has to finish a 500ml bottle water. (500ml less daunting than the bigger 750ml)

Then he has one 750ml premixed drink bottle of powdered gatorade mix,( + magnesium powder and carnitine) – has to drink this between 10.30 and

2pm – (easy to do at school while on lunch and recess, gulps it down in summer)

Refills the 500ml with water and has this by 4pm.

By this time, he has had over 2 l, so I feel pretty relaxed about what happens next, but generally, by bedtime, he has done daily total of 2.5l easily without feeling like he is drowning in water.

In summer, I will add in a bought bottle of gatorade if  hot and he has been exerting himself. Also make sure there is a lot of salt going in as we all do,  tons of water without the salt would, of course, make them worse. Always aim to load the salt in the morning. (I throw in a Berocca C many mornings too , it helps butchers broom absorption, but don’t like the additives in berocca, so still thinking about this one!) ”

 

See what I mean? Helpful stuff, huh?

How do you approach the fluid and salt intake issue? Does it come easily or is it a struggle?

 

RCH CFS Clinic Part 3 August 24, 2012

Filed under: CFS Resources,CFS Symptoms,CFS Treatments — parentingcfs @ 5:56 am
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Our girl woke up with a little more energy today which was good timing as it was Royal Children’s Hospital day!

For a start, going to the hospital is so much nicer now it is in the new building…money well spent I say. Also our girl got to have both parents along this time…you know how much teenagers LOVE that! Nah, it was all very cosy… she doesn’t see enough people at the moment to be too cheeky with the ones who hang around!!

Anyhow, feel great about the hospital clinic again. It turns out that the physio we are seeing at the hospital is good friends with one of the physios our girl’s been working with so all very easy to work together. So the physio session was a discussion of that, a breathing session for our girl…6 deep breaths in a careful position with chin dropped…and a 5 minute shoulder massage!! (Jealous me??? Ok maybe a tiny bit!) The physio says our daughter’s shoulder muscles are incredibly tight. Are your children’s? It was suggested the breathing exercise could be used in class to perk herself up. Deep breathing is certainly something I see as very helpful in helping our girl return to full health. She has breathed very shallowly since she became ill….and of course used to breathe beautifully as a swimmer. That changed overnight.

After that we had a brief session with the lovely Occupational Therapist who gave us some forms to fill in about sleep patterns and daily activity. We have done similar work with the exercise therapist last year and it was very beneficial…it was just the exercise part that wasn’t quite right for us in that situation.

Then we had a half hour break so we could get some lunch and give our girl a rest from concentrating. After lunch our girl had half an hour with the psychologist and then her dad and I did. It was all very supportive eg “Do you have any concerns about…?” etc.

It’s so NICE to have professionals telling you you are doing the right things AND helping you try to make things better. I really do feel like we have a team by our side at last! EVERY child with this diagnosis needs access to a group like this. I’s not everything but it’s a great beginning.

Hugs to all and do tell me if you notice your child’s slumped posture and if their shoulders are very tight? The physiotherapist says posture IS an issue for all of them.

 

RCH CFS Clinic Part 2 August 14, 2012

Filed under: CFS Resources,CFS Treatments — parentingcfs @ 5:20 am
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The nurse coordinator at the clinic didn’t have time to get back to me yesterday but did call this morning to let me know the team decision. She wasn’t even supposed to be in the office but had popped in for a couple of hours before doing her late shift nursing to finish her to do list. Services like health and education only function as well as they do because of committed people like this right?

So our girl has been invited to participate in four 2 hour sessions with the team over four Fridays. We could do it fortnightly x 4 if we wanted but are happy to do it weekly as close by. They can only offer us that length of time because there are so many children on the waiting list but if our girl needed it she could be referred back again. Which would entail quite a wait I’m guessing. So we’ll make the most of it while we can.

Also the physiotherapist (PT for those in the US) we saw there yesterday called us (even though also not her day at the hospital) to see how our girl had pulled up today. Honestly after 18 months of so little professional support it feels like Christmas! I told her that my daughter was indeed very tired and nauseated this morning but not too much worse than usual. Also yesterday afternoon she told me she was very brain dead after all the concentrating but she was happy to do it as everyone ‘was so nice’.

Talking to the physio further confirmed my impression that this group of professionals really are as up to date as possible and not peddling any outdated and sadly dangerous ideas about ‘just getting on with it’. It’s so great! They are only funded until November and then have to reapply…. Need many more staff than they have. We wouldn’t believe the waiting list apparently..you know what, I think we just might have some idea!

I also heard today that there is a new follow up study out that followed people diagnosed as adolescents over 25 years and found an 85% recovery rate. Haven’t seen it myself yet but it’s the best stats so far so I’m happy!

I think that’s all for now. We are off to the private physiotherapist tomorrow…and then hopefully our girl will manage to make it to school Thursday….it is Week 5 of term after all! But hey, no big deal! There’s always next week, next term, next year!

Smile and wave boys, smile and wave!

 

NEW Royal Children’s Hospital Melbourne CFS clinic August 13, 2012

Oh my. I almost have to pinch myself to believe. This morning I have taken my beautiful daughter to a clinic filled with compassionate professionals who who were purely there to help us deal with the ME/CFS  mire as best we could. You know, the kind of clinic that other chronically ill kids get referred to upon diagnosis?

It is a new initiative that Dr Kathy Rowe (and maybe others that I don’t know of) have fought hard to get up and running. Funding is very limited as I understand it (surprise surprise) but it has been especially earmarked for this project – and there is research going on as well! Halle -bloody-julah!

The clinic operates Mondays and Fridays. This morning our girl saw an OT and physiotherapist mainly together, then the physio got her to do one brief exercise, took heart rate etc. After that we saw a teacher consultant who actually provided us with papers for a student health support plan. Crazy that this is the first time we’ve seen one in 18 months of illness. Also heard about the Education Institute where our girl is entitled to access 40 one on one tutoring sessions a year! Who knew?! I can’t tell you how it felt to have the resources, that other chronically ill children in Australia get, offered to us with the CFS diagnosis. This acknowledgement, whilst still in its’ infancy, means the world and I sure hope is a sign of thinks to come. It cannot come too quickly.

Our girl also had a 45 minute session with a young psychologist which she seemed happy enough about. The approach seemed very supportive and my 13 year old felt comfortable enough by this stage to be fine with me leaving the room. It was a great sign. After that we saw the rehabilitation doctor who is overseeing the clinic. He just got some of the medical details and had a little chat.

Then our girl filled in a psychological test to gauge where she is at. She found some of the questions hard to answer..natural modesty interferes with how one thinks one should respond to “I think I am smart’ for example! However she had no hesitation when it came to answering “I like to hurt animals” with a resounding NEVER! It gave us a few giggles (not the idea of hurting animals obviously) and she kept looking to me for answers and I had to remind her it was how SHE felt about the statement and herself, not me.

Things such as the psychological evaluation and some goal setting that our girl did with the OT (getting to school was the top of her list, as was being able to get out of bed everyday!) helps the team to evaluate outcomes. Science…we like that!

The team is meeting now to see what they can offer us. I suspect it will be participation in the Outpatient program (attendance once a week for 4 to 8 weeks) with the inclusion of our physiotherapist that we discovered last week. RCH does now also have an inpatient program that runs for 4 weeks. There’s a HUGE waiting list for the clinic already apparently and they’ve only been going 3 weeks. We feel lucky to have somehow got in so early.

The emphasis seems to be on helping our girl get a grip on how best to manage the illness in the long term (although she will recover) as well as improving what she can do in the short term.

I’m just so pleased to see such a service up and running at the Children’s. Now to keep the funding going.

I’ll let you know what we hear.

Big smiles!!

 

 

Physiotherapy Part 2 August 12, 2012

Filed under: CFS Resources,CFS Treatments — parentingcfs @ 8:05 am
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For those of you who are interested our second visit to the physiotherapist also went well.

I asked more questions which he patiently answered and my girl did various pilates exercises. At one point, with the help of some equipment she raised her legs to nearly 90 degrees for the first time in over 18 months…..

She has continued to do the set exercise a little each day and has been getting up and showering every morning and had a few outings!!! All very exciting.

Of course, it’s very early days but she just might have pulled out of the several month long crash for whatever reason….I hope.

School as always is the test. However tomorrow we are going to a four hour clinic at the Royal Children’s Hospital. It is a newish set up. We will see an occupational therapist, a clinical psychologist, a rehab doctor, a physiotherapist and an education support person.

Such a long clinic is not ideal but having spoken to the coordinator now I can see it’s early days and they really are trying to get their heads around what they can do to help. My daughter was point blank refusing to go because the session was so long and ‘they can’t help me anyway’ (so sad to hear her say). However she spoke to the lovely coordinator on the phone on Friday and has declared her ‘an angel’ and feels that she will be understood and looked after and is happy to go. Terribly early start for us but hopefully will be worth it.

I’ll let you if I learn anything new!

Best wishes, smiles and waves! x

 

Latest adolescent CFIDS research. October 17, 2011

Filed under: CFS Diagnosis,CFS Resources,CFS Treatments — parentingcfs @ 3:29 pm
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Last month the biennial IACFS/ME conference was held in Ottawa. It’s actually nail biting stuff for us waiting to hear what is tabled as it seems we are at a pivotal stage of research into this mysterious illness and , of course, we are so personally invested and holding our breath constantly (okay not literally but you know what I mean!) in the hope of hearing of new, life changing developments.

I’m not going to go into detail. A full summary provided by the great people at Research 1st  can be found here.

Suffice to say there is still no definite evidence as to causes or successful treatments. However there was some news on time frame. One of our Melbourne specialists Dr Katherine Rowe presented and spoke about her latest research into adolescents. As Dr Charles Lapp summarises on the Research 1st website – Bottom line:  within 5 years 60% reported recovery and at 12 years 88% reported recovery, although one-third were consciously monitoring their activity.  More than 95% were working or studying part or full time.  What helped them most to recover were symptom management, continuing social contact, physical activity, and engagement in education (the best predictor of outcome).  Massage and diet advice was helpful, but restrictive diets and supplements were not.’

It’s been really difficult to find studies of outcomes for adolescents. As I’ve mentioned previously there was a general feeling that adolescents had a greater chance of recovery than adults but the only actual data available stated that only somewhere around 30% recovered. (Sorry I’ve tried to find that source  and post again but I’m running out of time to get this post done before other mother stuff takes over. Anyhow let’s choose to ignore that more negative source now that Dr Rowe’s slightly more cheerful study is published!)

So we will focus hard on being one of the 60% that recovers within 5 years. How will we do this? By NOT focusing hard on achieving anything except happiness. Which we’ll achieve by not doing anything hard. Oh it’s all so confusing! But you get the idea I hope!

Okay, off to think about ‘nutritious but delicious’ dinners. Again. Yee haa!