parentingcfs

Navigating adolescent CFS

Camp! February 29, 2012

Filed under: General — parentingcfs @ 12:38 pm

This week was school camp. 125 Year 7 students headed off Monday morning and will be back tonight -Wednesday. Our girl chose to go up just for the day yesterday and luckily the camp was only an hour away so manageable for me to do the driving there and back. (Actually I partly filled in the time by taking myself to the movies a little way away and saw “Any Questions For Ben’ and, despite what the critics are saying, loved it!!!! Highly recommended for people who like the movies I like – especially people who love Melbourne….!)

Anyhow, back on topic, our girl had 8 hours at camp! Among other things she participated in ‘water trampolining’ (is exactly what it sounds like -trampolines in water -bizarre but great fun apparently !) and rode on a flying fox! Oh and ‘walked up and down big hills Mum’! I know, dream come true right?!!!! AND SHE’S NOT BADLY CRASHED TODAY! She’s pretty tired (a 4), as I would expect after using muscles she hasn’t used for a while, but doing homework with no increased brain fog etc. It still feels like a miracle. She was very happy to come home and not be spending the night. She just doesn’t have the physical stamina still…

But, as I keep saying, compared to where she was, this is enough. : )

Ever heard of water trampolining???

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Two full weeks of school!!!! February 17, 2012

Filed under: CFS Treatments — parentingcfs @ 8:47 am
Tags: , , , ,

Just a quick update for those of you I don’t get to see or chat to. All is going swimmingly with our girl. Apart from the swimming which she’s had no time or energy for while she gets into the school rhythm!

School is working out as well as we could possibly have dreamed. Our girl is thriving on being back in the thick of life, in the way that only a child who has been missing out can. She organises herself happily in the morning, gets through her full school day, comes home and completes her homework and then watches tv, eats dinner and puts herself to bed early. She is loving French, has an Elvis impersonator as her drama teacher and is pushing ahead with maths…..can even do mental arithmetic again!

Of course, we are so so thrilled that she feels well enough to participate so fully in life. Then, there are the little things we notice. Like the fact she is finally back on an even keel with her little brother who still looks to her for ‘big kid’ wisdom and approval but hasn’t received much of it for the past 12 months as his big sister has struggled with energy and unhappiness. My heart bursts with joy every time she simply bothers to call goodbye to him as she leaves or compliments him on some achievement. It is so very welcome to have our beautiful, big-hearted girl back.

We still navigate life a little differently for her. We’ve decided she won’t receive the HPV immunisation she would be getting with other 12 year olds next month as we don’t wish to put anything more into her body for her immune system to deal with for the time being. We will catch up with it later.  She also has a 2 night camp coming up the week after next which is quite a challenge for her. Apart from sitting out some of the more physical aspects of it, she doesn’t yet trust her body to feel well enough when away from home… We are thinking one night of camp may be enough but will decide next week. Meanwhile she occasionally mentions public transport wistfully…as then she’d feel like a real high schooler apparently! I’ve noticed this generally only gets brought up very early in the week when she has some energy reserves. For now we will continue to drive her to and from school. We would rather she used any extra energy to do special exercises or pick up one of her instruments. Once I head back to work, should that become possible, she will need to catch public transport. These are decisions for a later date.

So I will sign off for now. I remember so happily waving goodbye to 2011 and welcoming 2012 and we truly couldn’t have hoped for a better start. May the stars be shining on you also.

 

 

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!

 

And so we go on….. February 2, 2012

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 1:06 pm
Tags: , , ,

So sorry for the long absence. As those of you on Facebook would know, somebody who takes joy in such things hacked into my good friend Nicole’s hugely successful blog Planning With Kids. As Nicole hosts my little blog it was also affected. However all fixed now and it is safe to return!

So, 22 days since my last post. What has been happening? Well may you ask! It’s one of those confusing times and the rollercoaster ride continues. The Florinef is evidently still improving our girl’s life significantly. However, it’s a little harder to tell at the moment as we’ve been adding exercise back into the mix as per our prescribing doctor’s advice. He tells us the Florinef helps her feel well enough to exercise and this latter is ultimately the answer. As you may remember from previous discussions on the topic, this is not all doctor’s advice and there is certainly extensive anecedotal evidence out there that exercising with CFS has caused long-term worsening of the person’s condition. So we continue to navigate the minefield in a way that seems to work for us.

Firstly, a happy coincidence. The local indoor pool, barely 500m from our house, has finally reopened. As you know, our girl was a great swimmer before she became ill. She has missed swimming immensely but rarely felt well enough for the effort required around the trip to the pool as well as the actual water immersion. However on 26th January, our Australia Day celebration was a family trip to the local pool. Our girl was so delighted to be there, and hopeful of no post exertional symptoms, she swam 275m. (We stopped her then) Andrew and I watched her with a mixture of pure delight and, in my case at least, anxiety! She swam with joy, like a seal, and I thought my heart would burst. This illness sure helps you find joy in the small things.

During the swim I kept an eye on her heart rate (taking it manually) and immediately afterwards we had her lie flat on a bench, as per doctor’s advice, to help her body continue to move the blood without her physically pumping her legs as she had just been doing…. and so, I assume, return her blood pressure to resting level less suddenly and thus reduce post exertional symptoms.

She pulled up fine, and on a high, that afternoon and evening. The next morning she woke tired, rated herself a 4 (first time since starting the Florinef) and chose to bathe rather than shower as didn’t fancy standing upright for that long.

By the afternoon she had rallied and was keen to get back in the pool. I suggested she muck around with a friend rather than swim laps. She did so and in the process probably did about 4 laps((100m). I got her out of the pool after an hour. The next morning she pulled up tired again and with a slightly sore throat. We repeated the hour in the pool with a friend. The following day she had a very sore throat and intermittent bad stomachaches and increased fatigue. I suggested she not go to the pool that day. Impossible to tell whether the symptoms were related to CFS’ reaction to the exercise or viral. She still had the same symptoms the following day so we didn’t go to the pool again.

The next day was Tuesday. She felt slightly better and met a friend at the pool and spent an hour with her as before. The timing was not great as the friend had a squad session starting immediately afterward and our girl was hit by a huge wave of despair that she couldn’t participate in her beloved activity. Fortunately we had one of her best friends booked in to stay the night. The following day she was tired from chatting until late and still had a sore throat. Stomach seemed to be less of bother.

Which brings us to yesterday. We went to the pool, just her and I and her younger brother. (He is loving all the trips to the pool and, somewhat surprisingly, is also doing laps, as he is doing the Kids’ ‘TRY’athlon for the second time in March. Unlike his sister he hated swim squad so it’s great to see him enthusiastic about swimming.) Our girl was a little down still about how CFS has impacted her life but was glad to be in the water again. She wanted to race us all but was afraid of the consequences. So we worked on a system of 1 or 2 laps, then a break, to stop her heart rate getting too high. We also hit on the happy idea of her coaching her brother and I on our swim technique and we had a lot of fun with that.

Last night she was very nauseous at bedtime but today the stomach hasn’t been mentioned. She still has a sore throat. We are off to the pool again shortly.

The immediate dilemma here is that now we’ve added exercise into the mix she has less energy again and school starts in 4 days. Should we stop exercising to give her the best chance of managing a full school load (minus Physical Education) or focus on the long term full recovery we hope for from the careful exercise therapy? At this stage I am inclined to keep her out of the pool Saturday and Sunday.

Such a long post but I know there are many out there who are interested in the details…and it really helps me clarify my thoughts by writing it all down!

All in all it’s with sadness that I watch our wonderful summer come to a close. I’m so grateful for our beautiful girl’s improvement and the lovely warm weather we’ve experienced here in Victoria. Now onto the next exciting stage – the reality of high school. We must be hopeful.

(A postscript – if you are reading this for information about your own illness I strongly recommend you read Sue Jackson’s comment below, she confirms some of the things I was feeling as I wrote this post and reminds me that any exertion counts as exercise for CFS sufferers. Thanks Sue. Also a reminder that I am just recording our experience not making any recommendations about what others should do.)

Best wishes to all and let me know your thoughts below x