parentingcfs

Navigating adolescent CFS

Dr Rosamund Vallings MNZM, MB BS April 29, 2013

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 12:26 pm
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Last weekend I was fortunate enough to attend a seminar given by Dr Vallings here in Melbourne.

Dr Vallings is a New Zealand GP who was a medical student in London in the 60s. Many of you will have heard of the epidemic at the Royal Free Hospital there in 1955 which is one of the known cluster outbreaks of Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome aka Royal Free disease. As a student, Dr Vallings “stood at bedsides” of the many hospital staff that remained chronically ill from this outbreak and studied this disease as a small part of her curriculum. In NZ her practice has become a beacon of light to many CFS/ME sufferers.

As she explained at the seminar, she decided to write her book “Chronic Fatigue Syndrome M.E. Symptoms Diagnosis Management” so that she could retire. In reality, the book has had the opposite effect, with her expertise becoming even more sought after by patients and colleagues alike.

I can thoroughly recommend the book. As you know I have been reading widely about CFS/ME since my daughter’s illness was diagnosed 2 years ago. Yet there is much in the book that is very helpful information for patients, practitioners and carers.

Dr Vallings talked for more than two hours (with a break for the poor CFS/ME sufferers in attendance in particular) and I felt we still only scratched the surface of her knowledge!

These are some of the things I learnt (or relearnt!) last Saturday: ( Whilst I do not have CFS/ME, my brain is older than it was and I don’t have a science degree. Any mistakes are mine entirely and none of this information should be taken as medical advice)

– The ratio of females to males affected appears to be more like 3:2 than the 5:1 previously believed.

– The severity of illness depends on the immune cascade

– Symptoms of relapse (and crashes) tend to mimic symptoms of the initial infectious trigger. ie; if the trigger was glandular fever/mono symptoms such as swollen glands etc will reoccur)

– In people with CFS (PWCs) the immune system is overactive and it is likely that the natural killer cells wear out.

– Slow gastric emptying is a symptom caused by the blood pressure issues. The bloating many feel after a meal is, in many cases, a result of food sitting longer than it should and being swollen by consumption of liquid, therefore it’s better not to drink too much at mealtimes….

– Fibromyalgia is likely (going?) to be renamed Central Sensitisation Syndrome shortly.

– Avoid too much Vitamin C as this stimulates what is probably an already over stimulated immune system.

– A rotational approach to food is best ie; eat food types on a 3 or 4 day cycle.

As far as the difficult area of exercise goes Dr Vallings had this to say:

No exercise results in a poor outcome

Too much results in a relapse

It needs to be regular and ,wherever possible, outside.

It needs to start at the level a PWC could manage EVEN ON A CRASH DAY. If that means wiggling your fingers and toes in bed, that’s where you start. If that makes you crash, try wiggling only your toes, regularly. If that fails, try stretching only.

Little and often is the key. (In my mind I call it stop/start exercise and count it when my daughter chases her little niece and nephew around the room)

PWCs must prepare before exercise and rest after.

And finally, build SLOWLY and avoid crash and burn (particularly difficult with teenagers!)

As regards supplements:

Of course she said be careful and sceptical.

She discussed Vitamin D, Omega 3:6 ratio should be 2:1 if taken, Vitamin B12 injections often helpful, magnesium, CoQ10 and D Ribose can help some.

And, for all my dear cyber and real life friends who are parenting this horrid illness, I’d like to reassure you that Dr Vallings reiterated that our precious young ones (we were particularly talking about onset around 11 years) are highly likely to recover. 🙂

There is more in her book and she spoke about much more. If you have any particular questions please ask in the comment section and I will answer if I can.

I’d like to end on a positive note. Dr Vallings said that in the first 20 years that she saw CFS patients very little research was done. Then there was 5 years when some was done. And in the last few years much has been done. She said something like 100 pertinent studies are published in reputable journals every 3 months at the moment. Don’t give up hope, she said. For at least some of the subsets, the answers are not very far away at all.

Here’s hoping she’s right.

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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 🙂

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.

 

Barbara Arrowsmith Young November 20, 2012

Filed under: CFS Treatments — parentingcfs @ 8:49 pm
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Phew. It’s one of those weeks where it doesn’t seem possible that it is only Wednesday morning!

Completely off the point of this blog, Monday was AWESOME! (said in musical tones!) For those of you who know me you would know that I am fascinated by the new developments in neuroscience…specifically plasticity and what it means for children with learning difficulties that aren’t helped enough by what is currently offered.

Well, on Monday I was lucky enough to attend a presentation by Barbara Arrowsmith Young,educator extraordinaire and a big hero of mine. So humble, so inspiring.I won’t go on about the details but it really made my year! I can put a big tick next to an item on my life list! Afterward, a taxi didn’t turn up,so I also drove her and a colleague back to their hotel, which was so exciting I’m thrilled I managed not to crash the car!! (oh and eternally grateful that the car had been recently vacuumed!)  There are many areas of the brain that need to be engaged when: driving, trying to think of intelligent things to say, finding the way and dealing with an out of body experience!

Anyway enough on that! Monday was also a long awaited day as we had our first appointment with a naturopath who is renowned for her skill here in Melbourne. So our girl has a new protocol to follow that includes various herbs, some Chinese medicine pills and 3  x 30g minimum (preferably animal based) protein a day. I will tell you more when we see some results.

Last night I went to an information night at my daughter’s school. Bad idea. What was I thinking?? Turned out to also be a celebration of what the Year 7s had achieved this year and it brought home all that my precious girl is missing out on. I was lucky enough to have a pretty great time at high school and I so want that for her. Ah well, maybe next year.

Meanwhile she is certainly better than she was 6 weeks ago. She has had a few sessions of a very slow 2 minutes on the exercise bike these last weeks with no noticeable downhill slide so here’s hoping.

May your news be good news.

 

 

Midodrine October 23, 2012

Hi all

Just thought I’d better post an update before we add something new into the mix today!

Today is Day 11 of our girl taking 5mg of Midodrine twice a day. She takes one before she gets up..with a full glass of water or juice if she can manage it..then one 4ish hours later. It is not recommended to take one before bed as increased vasoconstriction whilst supine is not something we are seeking!

Has it made a difference?

I would have to say yes.

Her blood pressure is certainly on average higher than it was when she is upright. On the first day it felt strange ‘inside her head’. I suggested it was her brain saying, “Holy Cow where has all this blood come from..yippee!” She doesn’t find me as funny as find myself : ( Yes she is 13 now. Anyhow there are several indications that she feels a little better on this drug:

1) she takes it without complaint

2) she regularly eats at the table with the rest of us rather than asking for the food to come to her room

3) she has had either an appointment or more than an hour visits from friends pretty much everyday over the last week and has not crashed as badly as she would have previously.

4) she asked to go to the mall where she likes to shop last week!!!! We went for 2 hours and the crash was minimal.

All of these are very significant signs to the hovering parent!

Of course, we continue to see the physiotherapist whom our girl completely trusts. Last week we saw his colleague for the first time in 6 weeks and she commented on how much more our girl could do in the session. It was lovely to hear that as one doesn’t notice the small improvements so much when seeing her daily. Compared to the 35 degree leg raises done on the first visit, our girl’s legs can now be raised to a 90 degree angle regularly. (Not independently, the physio raises them, but the increased flexibility is important as it shows neural tension has been improved) Exercises are done at home but I do wish we had access to this kind of expertise and equipment on a daily basis….in an affordable manner. Our physio and the hospital are working together now so hopefully this program will become established. Please note this is not GET as it is misunderstood by most people, this is a carefully personalised clinical pilates approach that addresses neural tension.

Oh there is still no progress with school and the brain fog (or brain frog as a very sick girl in the UK calls it ..shout out to you N!) still stops her reading… a real sign of how ill she still is.

Today we are off to try something new. Sacro-cranial massage! I know! Sounds like fun huh?! Will fill you in later…..

 

Physiotherapy Part 3 September 6, 2012

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 5:41 am
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Bit of a grim start to the day with our girl attempting to go to school but not quite getting there.

She is in quite a lot of pain with her right knee which is a new thing and almost certainly the result of the clinical pilates she’s been doing. However it doesn’t fill me with the usual worried ache in my stomach. That’s because I call the physiotherapist and they listen and suggest tweaking the routine in ways that make sense to us and we feel someone who knows what they are doing is really listening to our girl’s body. Such a relief.

So, still no school, but today and yesterday many of her symptoms have been absent or less troublesome…just the knee throwing a big spanner in the works right now!

Off to RCH clinic tomorrow.

I am exploring meditation possibilities at the moment too, so do write in if you have any suggestions please!

Hope life is going well in your corner of the universe.

 

 

 

Frustrated ‘fixer’ mother. August 22, 2012

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 12:28 am
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We tried rest, didn’t work. We tried medication, worked for months then abruptly stopped working. We tried exercise, she got worse. We tried rest, she got worse. Now we’ve finally found someone who can do a very careful strengthening routine with her…and this week she’s worse again. If you haven’t lived this you cannot understand how it feels when your 13 year old doesn’t want to see another clinician because ” They don’t know anything. They can’t help me.”

I now know I’m a fixer. I can’t accept that I can’t find an answer to my daughter feeling too unwell to go to school or have any kind of active life. And yet, after nearly 2 years, acceptance is becoming my greatest friend…it protects me from the agony of false hope. I would do anything to help my child and here I am where there is virtually nothing I can do except love her, feed her and let her do anything she’s up to.

I’m getting pretty angry about the lack of attention and funding this illness has received to date. This morning I sat there watching her make herself swallow medication and wondered at the immense responsibility I have for this life as I daily make decisions on what she takes/eats/does with absolutely no evidence-based guidebook. The responsibility comes with parenting of course, you never know the cards you will be dealt. But most people get a little more research thrown their way when chronic illness rears its head.

I’m, of course, hoping this week’s sore throat, dizziness and weak legs is due to a virus and not the gentle pilates. But am I kidding myself? Whatever the cause we’ve eased back off the ‘exercise’ for the moment again. (Exercise in this case is lying on the floor with her head raised slightly and raising and dropping her arms. Seriously. Do you get what I’m saying?  This wipes out a child who used to do 50 push ups plus other exercises then swim for 90 minutes.)

Anyhow, I just needed to vent. My girl can still get out of bed, mostly. We have a roof over our head and enough money. We have loving extended family and great friends. If spring could just come…..

 

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!