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.

 

Florinef vs licorice root March 6, 2013

Hmmm, you may have noticed a lack of posts recently. I have started studying some human physiology on line and I am so busy remembering terms like adrenergic synapses and equilibrium potential that my head is reeling and my time a little more limited. However here I am to update you on where we’re at.

Firstly, school. Just too exhausting and no fun anymore. The school has been fantastic as always and happy to go along with whatever our girl wants. It’s impossible to explain the difference this makes to our stress levels. I am so grateful as I hear some awful stories about lawyers having to get involved in the US. Anyhow, our girl is going to try Distance Education Maths. It will hopefully give her some sense of progress as there are so few other ways for her to mark the passing of time these days.

Secondly, medication and supplements. Last Friday, on the recommendation of our highly qualified naturopath, we began an attempt to remove Florinef from our girls medications in the hope that the licorice root she is on will give her enough support to counteract the Florinef lack. I have come to believe that licorice root has other properties..particularly related to gut health…that make it a very important supplement for our girl and it’s inadvisable for her to be on both Florinef and licorice root.

I would say we are seeing a negative impact already, with increased fatigue and sense of unwellness, some headaches and stomachaches. I remember when she began Florinef she responded to it positively very quickly and I think her body is now responding to its’ gradual withdrawal equally quickly. I am in contact with our naturopath and we have another appointment next week. The doctor who prescribes the Florinef and Midodrine that our girl is on is aware of our decision and told me that he prefers Florinef but when it doesn’t work for people he suggests licorice root.

The cranial osteopath we have been seeing has been getting some terrific results with our girl, increased energy and sense of wellbeing (Though not enough to get her back to school- yet). I’m sure it’s the movement of all the body fluids but that’s a very lay opinion! So we’ve been on an upwards path and now we’ve thrown this in the mix. Ho hum.

I will try to post again soon to let you know how we go. ¬†If we need to go back to the Florinef we will.¬†I’m not going to go into a discussion of the different chemical actions of Florinef and licorice root as I am certainly not qualified but rest assured this is not a decision that has been taken lightly!

Which reminds me I saw a great T shirt the other day that advised ¬†“Live lightly, think deeply.” Nice. Even nicer was our daughter’s choice of t shirt on a shopping trip a few weeks ago. It reads “My life story will be a good one.” She says it’s empowering. She’s awesome.

May today be a good day with you.

 

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…..

 

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?

 

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! : )

 

This too will pass July 17, 2012

Filed under: CFS Symptoms — parentingcfs @ 5:16 am
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Second Day of Term 3 today and our girl hasn’t made it in to school yet. This morning’s conversation went somewhat like this:

(On my walking into her room) GG: I’m sorry I just couldn’t get up.

Me: ¬†Oh darling, that’s fine. (Pause while I swallow my own disappointment and ponder my next words.) ¬†You know, it’s really hard for everyone at the beginning of term getting back into the routine….

GG: Please don’t make me go.

Me: No no, I never make you go. Just maybe this is one of those times where you have to do what you’ve committed to.

GG: I feel like someone is sitting on my shoulders. (She is lying down still….bad ¬†blood pressure sign if you feel like that lying down. She’s never described it like that before.)

Me: Oh sweetheart. Have you felt like this before?

GG: Yes, when I’m crashed it feels like people are sitting all over me.

Me: Ok. I’ll just get you a drink and some breakfast and we’ll see if that helps.

(On my return to the room she’s still lying down eyes closed but speaks)

GG: I HATE this. I so want to go to school.

Me: (acknowledging internally that as always she is demonstrating without realising it that I must accept she knows what she’s doing.) I know you do. Never mind. Maybe tomorrow. (internal sigh and another little crack in heart)

Luckily we have four episodes of Offspring that need watching! We’ve got through 2 so far today. Yesterday she wrote beautiful poetry and caught up on maths. Now we’re waiting for the Maths teacher to tell us what chapter they are doing this week. Oh French though. We need to do some of that if she’s up to it.

How was your morning?

 

Winterland crash and gentle gentle PT June 5, 2012

Filed under: CFS Treatments — parentingcfs @ 6:32 am
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Well my precious girl is home in bed for the 4th week in a row….. She’s been managing a few half days here and there but has been absent something like 70% of the time. The weather has changed and it’s possible her body is taking a beating from the viruses that are all around us. Her fatigue has worsened, her knees are sore and so is her stomach at times.

Her spirits are okay as, when she has made it to school, she’s still felt comfortable socially and she still pulled an 85% ¬†in a maths test.

There’s no doubt her fluid intake has lessened considerably as the weather has turned cold so the Florinef does not have as much fluid to source and hence help her body retain. Today she is making a conscientious effort to get that water in so we’ll see. One litre down already! Let’s hope the next few days bring a bit of a pick up.

Yesterday our girl had her first session with our phsyiotherapist friend who is also trained in yoga therapy. M has been incredibly generous with her time…listening to me rattle on about what I know ¬†about ME/CFS and what I wish I/we/the world knew over cups of coffee and sharing her understandings with me. It’s been so wonderful to have someone to chat with who has M’s skills, knowledge and empathy. She asked me for links to research and I bombarded her with 6 or 7 papers and yet still she smiles at me! As you can gather, I’m extremely grateful that yet another wonderful professional I know has been prepared to spend their precious time researching an illness so little understood, in order to help my child.

Yesterday M confirmed that our girl is NOT hypermobile. In fact she is pretty inflexible currently! Yesterday’s session consisted of some Q&A and a breathing session whilst lying prone and, at the end, extending her arms above her head. No more than 20 minutes. M is proceeding gently gently which is just perfect for us. She told our girl that any exercises could improve or worsen her condition, it’s a trial and error thing and everyone is different. By taking it gently we should be able to gauge which way we are going.

Today our girl has had a stomachache (one of the symptoms she gets when she’s overdone things) however it’s impossible to know if that is due to yesterday’s session or the fact that she was awake between 3am and 6 am last night. Or something else entirely! ¬†Suffice to say we will be persevering with the (gently gently) physical therapy for now.

Those of you who remember our girl’s sessions with an exercise therapist last year and how much she enjoyed the actual sessions but just couldn’t persevere with the exercise without losing energy for school and life, and our experiment with swimming earlier this year may wonder why we are at it again. The thinking is that maybe the exercise/no exercise debate exists because the level of physical activity that many start at is simply too high. That some people need to start with very very minimal breathing and stretching exercises..possibly even with their limbs being supported for them??? Especially those with hypermobility?? ¬†And that this extremely low starting point is very difficult to a) pinpoint and b) believe is enough when before the therapist’s eyes the patient seems to be coping? Maybe the therapy ME/CFS people need is more like what people get for recovery from a stroke?

I’m really just rambling here. I have no scientific qualifications! Would love other’s thoughts.

May your day be full of chocolate and strong cups of tea with friends! Just like some of my favourite days! Oh and please let me know if meditation/yoga with a focus on breathing has helped you at all x