parentingcfs

Navigating adolescent CFS

Midodrine? April 27, 2013

Hi all

Just a quick post…is the plan!

Shortly I am heading off to a seminar about to be given by NZ Dr Rosamund Vallings. More about that after.

Wanted to share that our darling girl has been more active this week than she has been for ages! Has been out of the house EVERY day except one..and not just for a car ride.

Sun: helped friend get ready for dance competition

Mon: appointment

Tues: visited old primary school for 90 minutes and read/played with 5 to 7 year olds in their class!

Wed: bed

Thurs: 3 HOUR  visit from high school friends, including an hour out of the house.

Fri: 2 hours clothes shopping AND requested stop at playground with 4 year old cousin who we picked up on the way home!! Believe me, I couldn’t redirect the car fast enough!!

And today, Saturday, she has just gone on a quick car trip with Dad. This is sustained activity day after day that has been unknown for a a year now!!! Always hard not to get excited but must enjoy good times too. She’s also been working on Distance Education maths almost daily for 20 minutes.

Briefly I thought,’ooh recovery?’ then remembered we upped her Midodrine dose (a vasoconstrictor to help pump the blood back to her heart) from 2 pills twice a day to 3 pills twice a day and that probably explains it. But we’ll happily take a good week anyway we can get it ūüôā

On a more sober note, our beautiful younger son (11) is displaying more and more troubling signs of similar problems to our daughter and just this morning we found that his heart rate too is jumping 30 bpm when he goes from lying to standing..a sure sign of orthostatic intolerance. Ho hum. ¬†We’ve had to pull right back on sport as, apart from the fatigue, his legs are causing him terrible pain. This week he didn’t run the school cross country race…that he went through to district level in last year. So sad to see an 11 year old boy coming to terms with physical restrictions of his body that no one can fix. He was relieved to hear that doctors and researchers are working hard to help him right now all around the world. Indeed, just over the last 2 days there has been a huge FDA meeting in the U.S. with many fabulous people who are trying to help solve this mystery. Apparently one doctor said he tells his young researchers that CFS is the best field to get into because it is the most complex medical puzzle out there. Here’s hoping we can help our precious kids soon.

Anyhow, must get on with the day. Hope all is well with you.

 

Everyone’s growing up. November 27, 2012

Filed under: CFS Diagnosis,CFS Symptoms — parentingcfs @ 10:36 am
Tags: , ,

It often takes an incident to make you realise how much you have changed.

Today I took my 11 year old son to the doctor because he has been having a lot of pain down the backs of his legs. It’s not something his sister (with CFS) has experienced BUT:

1) he is almost the exact age she was when she first became ill

2) he is growing fast (as did she)

3) it is highly likely that our girl’s condition, whatever it is, includes, at the very least, a genetic predisposition (ie my genes + my husband’s genes + ? = perfect storm)

4) he has been experiencing occasional dizzy spells, headaches and near constant fatigue for over a year

so you may understand that we are a little concerned.

So perhaps you’ll also understand that when this GP, whom I like very much, said he couldn’t explain why our boy was having these pains (especially only in his calves and hamstrings) but that he wasn’t worried, I didn’t exactly feel relieved.

Two years of coming to terms with the fact that no one, even doctors, has all the answers and now I just breathe, say thank you and keep looking.

It’s not paranoia, it’s educated realism.

Anyone else have experience with this kind of leg pain, in both legs?

 

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!!

 

 

Pass the next medication please? August 2, 2012

Saw the clinical pharmacologist (who prescribed Florinef back in December) this morning. It was our first trip since January.

Feel strangely reassured despite the fact he told our girl that her BP was going to be an issue until she was 25 ish….worst case scenario. Basically he said you just need to accept that this is reality and you are going to be able to get through school (not sure how at this rate!!) but not always do everything you want. He accepted my explanation that every time we try to introduce exercise school attendance suffers and also admitted that if he were me he would be taking his child to see anyone who might help too. However, he remains convinced that all our girl’s issues stem from her BP issues rather than the other way around.

He knew of the physiotherapist I’m taking her to see next week and that his theory is that nerve issues are the culprit. The CP said he thinks the theory is wrong but that he was very happy for us to see him as he has helped people with the exercise routines he’s developed. (More about this after our appointment next week. As I’ve mentioned before, our girl has clear nerve tension issues that we want to tackle in the hope it will enable her to do muscle building exercise with less payback.)

Anyhow, the upshot was that we are adding Midodrine into the mix of medications in the hope it will get our girl back on her feet. This is a medication that has to be ‘approved’ for dispensation in Australia still…because there has not been much demand for it. Yet. There may be a lot more soon as it was evident that our CP was seeing a lot more teenagers like our daughter as word is spreading.

So, we will probably give it a try. Our precious girl just wants to get back to school – as she told the doctor this morning.

So why do I feel reassured? I think it is because I feel less like we are being left on our own to muddle through and more like we have somewhere to go when things aren’t working? I also felt like all the right questions were asked this morning and things seemed manageable. In the meantime I’ll keep working on acceptance and don my penguin suit again. Smile and wave boys, smile and wave! : )

 

ME/CFS Awareness Week 2012 Seminar Melbourne May 5, 2012

Hi all!

A few people have commented about the lack of new posts from me. It’s due to the fact that as my girl is able to function well enough to attend school and is in quite a happy place I am able to be less obsessive about ME/CFS. It’s a liberation I don’t take lightly and a huge amount of my time is still spent reading and talking about the subject but I guess there is less need for me to vent online as I am not as sad and frustrated. Also my wonderful online support group now has 80 members and I tend to go there to vent.

So, why today’s post? As some of you will know May 5th to 12th is ME/CFS Awareness Week. May 12th was Florence Nightingale’s birthday. She is thought to have suffered with ME/CFS after returning from the Crimean War. I have just spent 4 fascinating hours at an Awareness Week seminar run in Melbourne, listening to doctors talk about diagnosis, treatment and outcomes. I went thinking that if I found out one new thing that would be enough. I found out a lot more than that.

Firstly the Opening Address was given by Linley Frame, an Australian Olympic medallist in swimming. Her speech moved me to tears. Her sense of loss regarding swimming was so very close to what my daughter has lost (without reaching the Olympic heights!) that I was profoundly moved. It is not the competition that she misses most it is the way of being. I believe Linley has only recently begun speaking about her ME/CFS and is now an ambassador for the illness for which I am extremely glad.

The Keynote Address was given by Dr Sonya Marshall-Gradisnik, a world-class immunologist from Bond University (though soon to move to Griffith, partly so as to be connected to a hospital where they plan to run inpatient trials……very very interesting and supportive stuff) Dr Marshall-Gradisnik has already published groundbreaking data about CFS and this month her latest research regarding biomarkers will be published. In summary, and forgive my lack of detail as I am dealing with a both forgetful and unscientific mind…my own I’m referring to!….the research further expands the knowledge that the natural killer cells our bodies need to fight viruses and tumours are both lacking in numbers and severely impaired in ME/CFS sufferers. One thing this explains is the bad reaction to vaccinations. (However the clinicians pointed out that each individual needs to weigh up the risks in not being vaccinated when travelling etc…ie: much worse to get HEP B than deal with the reaction…..) In addition, these cells are coded in our genes. ¬†Critically, Dr Marshall-Gradisnik plans to do further research now, in partnership with Stanford based researchers in the U.S. on the hypothesis that we are dealing with an auto-immune disease.

Being privy to a not yet released paper was enough to make me already glad I was there, to also witness Dr Marshall-Gradisnik’s empathy and professionalism was a bonus.

Dr Donald Lewis, a GP specialising in CFS treatment in Melbourne, spoke next. If you are an adult looking for a CFS knowledgeable GP in the Melbourne area I’m guessing he’s the guy. He spoke with GPs in mind, giving tips on diagnosing and helping CFS sufferers. It was a comprehensive and detailed presentation that will best be captured when the seminar DVD is released (I’m making an assumption there as I saw there was one of last year’s seminar….). Dr Lewis viewed CFS as a tree. The roots were ‘a genetic predisposition + food intolerances’, when these roots were watered over and over again by stressors, you end up with the branches of OI, headaches, sleep problems etc. He also expressed this as an sensitive immune system being overstimulated continuously , for example by a food intolerance, until one significant event (eg, Glandular Fever) results in overload and ME/CFS. It made a lot of sense to us and highlighted what we have been aware of but trying to ignore whilst we enjoy our girl’s ability to attend school and function so much better. And that is that we have to work out the root cause of her CFS. As her dad is dairy sensitive and she has demonstrated sensitivity too, this will be where we will start until we get her tested. She chose to switch to soy milk months ago but refuses point blank to give up cheese so we have a challenging time ahead…especially as she needs to be able to make these decisions for herself and have control.

Dr Lewis also spoke about how the fight or flight response caused by production of adrenalin and , in CFS sufferers, oversensitivity to it IS THE SAME as an “anxious’ response and hence it is indisputable that ME/CFS is NOT a psychological illness but very clearly a physiological one. (But we’re all on board with that one anyway right!) He spoke about how people with ME/CFS have to become experts at managing stress and anxiety responses as their bodies are constantly under physical attack. Which confirmed what I have been telling my girl for months: ‘your body is tricking you into thinking there is something to worry about when there is actually not. It’s just a physical overreaction by your poor immune system’ or something along those lines. She also uses Rescue Remedy and deep breathing which works somewhat for her.

Our clinical pharmacologist, the amusing Dr Chris O’Callaghan spoke on Orthostatic Intolerance in isolation…ie; not specifically how it relates to CFS but what it is and why it happens and what can be done about it. As it is a major symptom for many CFS sufferers the talk was received with interest. Since we have already spoken in depth with Dr O’Callaghan there wasn’t much new here for us. He did however state categorically that exercise does NOT help all OI sufferers. (I think he said 50/50 but I can’t be sure)

After a tea break we then heard sleep specialist Dr David Cunnington talk about managing sleep and ME/CFS. As our girl’s sleep is under control thanks to magical melatonin (although a reminder to people that melatonin needs to be taken 12 hours before you mean to get up, which is a few hours before you actually go to bed. Our girl generally takes hers about 7 and then turns her light off at nine and is asleep by 9:30.) One thing Dr Cunnington mentioned which I wanted to pass on is that a) other sleep disorders can occur in people with CFS/ME b) they present differently and c) they have more impact because the body is already so sensitive. He particularly mentioned that a GP may ask someone if their partner says they snore and gasp/choke for breath while sleeping and if the answer is no the GP will say ‘not sleep apnea then’ when actually because ME/CFS sufferers bodies are so sensitive they will wake themselves (from sleep apnea) before these symptoms appear.

Dr Kathy Rowe, who we are lucky enough to have as our paediatric CFS specialist, spoke last to present her study that she previously presented in Ottawa and I have already discussed in this post.

All in all a very interesting afternoon. I spoke with a mum who attended this seminar 10 years ago and she said how much more positive she felt after today’s seminar. I felt the same. We are getting there. It’s just a slow process for those who are sick and their carers.

I’ve tried my best to report accurately on what I heard today but I will have missed much. My apologies to the speakers if I have misrepresented anything they’ve said and if, as a reader, you are particularly interested in any point please go directly to the research and practitioner. I may have got it wrong!

 

The rest of her life starts now! February 8, 2012

Oh my oh my. This is it – the post where I get to write that modern medicine seems to have come through for my child!! Woohoo! The birds are singing, the sun is shining and I am smiling and laughing like there is no tomorrow. Only there is a tomorrow, and a tomorrow and a tomorrow and now my darling girl is much more likely to be able tackle each and everyone of them much like any other high schooler.

Why am I so elated? Well, as you probably know, we were finally able to start our girl on a daily dose of fludrocortisone (Florinef) on the 26th December just gone. This was a full 12 months after she first became ill. No one offered this alternative to us at any time, it was the result of knowledge discovered online (primarily through Sue Jackson’s wonderful blog) and our perseverance in seeking the prescription from someone who could give it to us. ( In our case a clinical pharmacologist, otherwise you probably need a cardiologist.)

What I knew prior to our girl starting the medication was

a) ¬†97% of adolescents with CFS have blood pressure issues and our girl’s showed up when I asked our GP to do Dr Rowe’s in-office ¬†20 minute test

b) fludrocortisone is used in the US for treating CFS with some success

c) the success rate is apparently low…around 25%…HOWEVER this takes in the whole gamut of CFS sufferers and fludrocortisone is MOST likely to work for younger people who are still relatively active

Ok, back to why I’m so elated (did I mention that??!!!) We had seen some significant improvement through January but knew the real test would come with school starting this week. And guess what??? She is just about through her 3rd full day of highschool…after not attending 1 full day of primary school for the last half of 2011!!!! She is tired yes but that’s to be expected moving to a new school of 1500 and learning the ropes. Yesterday she came home and proceeded to complete 3 hours of Maths homework. I could have strangled the Maths teacher with my bare hands as we are so concerned she will overdo it and relapse. However she plugged on quite happily and got up with a smile and a skip in her step this morning! Oh oh oh!!! You can only imagine the joy in our hearts and the mood in our house. Her dad has been sure to be working in Melbourne this week so he could help me navigate the potential minefield of the first week and so has been here to share the joy as well.

All my life I have been a cautious person and there IS a voice inside me saying ” Are you sure you want to write this post? It’s early days and she could overdo it.” but you know what? I’ve had to guard my emotions so much these last 12 months that right now I just want to scream it from the rooftops and leave next week to worry about itself.

Yes, we need to be careful. She does not have her complete life back for sure and we expect her to miss some school every week to ensure her body can cope with the new activity. She won’t do any sport apart from therapeutic exercise and no music lessons. However compared to the one or two subjects she was looking at being limited to before fludrocortisone, her life seems very rich indeed.

To all of you out there who have so kindly followed our progress, especially those of you who have commented, I send you the biggest possible thanks and hugs. If it were possible to have a party in cyberspace I’d sure be having one!

To those of you still struggling to get a ‘normal’ life back and/or find the answers for your child I wish you the very very best of luck (do investigate Orthostatic Intolerance in CFS if you haven’t already) and sure hope some of ours rubs off on you.

Hugs and kisses from a very, very, very, very happy mother!

 

Can a pill make a difference? December 29, 2011

Hello all. I do hope these post Christmas days find you comparatively well, happy and relaxed. We have had a lovely Christmas with my in-laws, and the sun has mostly shone which I adore! Our girl has had one lovely beach swim and we hope for more.. Forecast is good!

I wanted to update you all on the latest developments with doctor visits. As I’ve mentioned before, we’ve been waiting on a cardiologist referral from our CFS paediatric specialist that never turned up and our lovely GP suggested we go back to see the Clinical Pharmacologist we saw back in August¬†as she knew he’d just prescribed Florinef (the blood pressure drug we’ve been keen to try) for another adolescent patient of hers. Actually, in person, he told us he thinks he probably prescribes more Florinef than anyone in the world…an interesting claim! As a clinical pharmacologist he says he’s come to CFS from a different angle. He treats many spinal injury patients who have similar blood pressure issues apparently….

Firstly, seeing him again was our Christmas miracle as the poor man stayed late on the final Friday before Christmas in order to squeeze us in and fielded a phone call about his ETA from his wife….and then went off to advise a junior doctor dealing with a dying man after us. So after all our waiting I felt very appreciative…especially as he prescribed the Florinef!!! Woo hoo! He described it as ‘the less effective drug to try’ and sent off the application for Midodrine which he says is more effective and I understand is often given in tandem with the Florinef. (Canberra has to approve dispensation of the drug he says because demand is not high here)

He went into detail again about building up exercise tolerance as being key to best results and I believe prescribed the Florinef after my blunt description of how our daughter simply refuses to follow a routine as it makes her ill afterwards. He could clearly see she needed chemical intervention to help her on her way. In summary this is what we learnt:

– lying down ¬†for a period immediately after exercise helps her body return to a happy state sooner because while she’s exercising her muscles are pumping the blood for her and that stops when she stops…

– she would have felt particularly good when boogie boarding last month because she had a very tight wetsuit on that was helping her blood vessels constrict! (Unfortunately that wetsuit really is too tight to be comfortable so we need to get a new one)

– the doctor said ‘ this is a condition you will have all your life but you will improve around 18 years of age’ In my opinion this is because he believes Orthostatic Intolerance IS CFS. ¬†(He doesn’t claim to know what triggers it) Is he right? I must ask him next time if that would account for inability to reproduce VO2 max output rates on a second day…..

– a few rapid squats when she feels bad (anything that pumps legs to chest basically) can help – and does, she has employed this frequently since seeing him and says it works.

– for those of you interested in the minute details of his attitude to Florinef: he doesn’t think excessive fluid and salt intake are essential, he strongly recommended not bothering with a gradual upping of dose from .025 but starting on .1 ¬†Our daughter heard my extensive discussion with him on this (including my tendering of Dr Rowe’s report and his perusal of it) and refused to start on one tablet because she was fearful of side effects (the disadvantage of debating these things during doctor visits) She took .05 for two days then one tablet yesterday. So far no change either way.

So, at least we are hopefully treating her main symptoms…..it’s very exciting! We have a follow up appointment on January 11th. I can’t tell you how glad I am that we got that appointment in before Christmas to give our girl the best chance of starting high school in her best possible health. Please please let the medication work……. We have started one minute on the exercise bike and will see how that goes. It makes sense to us that muscle strength is very helpful. I’m working on that myself too at the moment for other reasons!

Meanwhile it’s just lovely everyone being on holidays and everyone going at their own pace.

 

How’s life with at your place?