Archives for November 2017

I started writing this post at the beginning of October…and am finally getting round to finishing it now. I can’t believe it’s been so long since I last posted! But life just goes like that sometimes doesn’t it? When you barely have time to reply to texts never mind manage a blog post. But I always have a couple in my head waiting to get written when I find a rare, spare bit of time!

I’ll try and keep this current (and not too long!) but it will back track a little to update how things have been these last few months since the kids started back to school. And considering they started at the end of August and we put our Christmas tree up last weekend (too early?!) I have quite a bit of ground to cover!

So, this one is about school, sickness and swelling as the title says. Both Max and Lucia settled into their new classes really well at the beginning of term, their work kicked in pretty quickly and the intensity of routine tired everybody out after the long summer holidays.

And, as every parent knows, the return of school also means the return of school germs. Schools are quite simply breeding grounds for all of the nasty bacteria that love to create havoc in family life. In the first eight weeks of school, Lucia was off sick on three separate occasions. Yes – three times! And in the last week she has been dosed with the cold, high temperatures and tonsillitis meaning she hasn’t been at school all this week either.

The ‘episode’

The first bit of time off came about two weeks into the new school term and was a funny one (maybe one I can’t even blame on school germs?? But I am going to anyway). All I can describe it as, is like an ‘episode’.

It was a Friday evening, she had ate dinner, we had done her therapy and she was in good form. Literally though, within a minute she started to feel unwell. She turned white as a sheet, thought she was going to vomit so stood over the toilet for a while though I had to support her as she had wobbly legs. She became very lethargic, her body had the shakes and she ended up curled on my knee on the bathroom floor barely able to kep her eyes open, drifting in and out of sleep. She also got very cool and clammy to the touch and it was a pretty horrible experience.

This has happened before. This was the fourth occasion. So we knew she would be fine, though still extremely worrying none the less. Each ‘episode’ as we have called it does seem to come after a big day, a busy time or a stressful time.

The first time was about a year ago after a hospital visit to the genetics department where she had to get quite a bit of blood taken. She had seemed to handle it really well during the actual visit, then at tea time this same sort of thing happened out of the blue. The second time she had high temperature which most probably brought it on. The third time was after she went on stage with her ballet class to do a little dance and afterwards her body jut seemed to ‘crash’. And then this latest episode. We always try and find an explanation for these moments, so this time we thought it was the first two weeks of school catching up on her and getting all too much for her to physically deal with.

Does this sound familiar to anyone? Has this ever happened to anyone with Lymphoedema or who has a child with Lymphoedema and maybe overdone it? I’d be so interested to hear. It takes her days of rest to get over this.

Sick, sick and more sick

A few weeks after this the dreaded tummy bug hit her and it was horrific – but I’ll spare you the details. About 10 days after this she then relapsed with the bug again…

Then last week she was completely loaded with the cold, her temperature starting spiking and this week a visit to the doctor diagnosed tonsillitis.

I know I have written about sickness before (check it out here) but I do wonder if Lucia does pick up more than an average five year old. I remember Max picking up a lot as well (but this much??) so maybe this is normal and I’m worrying for no reason. Or, as mentioned before in a previous post, is it because the immune system is intertwined with the lymphatic system so it just doesn’t work as effectively?

Swelling conundrum

So her swelling. Once again we are finding it definitely increases when she is at school in comparison to when she is off school for an extended period. However, she does have her legs elevated under her desk everyday when in class and this has definitely had a positive impact. On treatment days I just try and spend some extra time working on those areas which seem to gather fluid the most – feet, ankle and lower leg.

When she is ill her swelling usually flares up but, randomly, these last few times her leg and ankle have looked fantastic even though she wasn’t wearing compression for a few days – we just don’t have the heart to squeeze her into them when she is feeling poorly. Her right foot and toes do suffer though so if she can manage wearing toe caps we try and put them on for a few hours at least.

So why would her leg swelling be so good?? Is it simply because she is off her feet pretty much all day so gravity and pressure isn’t able to cause so much swelling? We do have her elevated constantly when she is sick to try and make up for the lack of compression so maybe this combination is the key. Again – any knowledge or experience welcome. We do be pretty baffled.

Guess work all the way

I think the whole ‘guessing game’ just gets tough sometimes. Trying to find rhyme or reason for why she is more swollen one day than another or why she has been ill so much. Guessing why she is complaining of pain in her ankle or why her legs feel more tired today than yesterday. Always guessing.

But, at the end of the day, we continue to manage with whatever comes our way and Lucia copes with everything in her own amazing way. And because she is so young she doesn’t event realise how remarkable she is. This is just her ‘normal’. So long may that continue being the case.