MOM TO A MEDICAL MYSTERY

Acceptance

The thing about a medical mystery is the lack of diagnosis, accepting this is the most difficult part of looking after a child with an unknown condition.

In my first post balance was the key element, finding a way to balance being in the present and enjoying life with our amazing child and worrying about her future.

This time I want to focus on acceptance as we are still very much at the beginning of our journey with doctors and medicines, alternative treatments and repetitive testing.

What was unknown to us from the start, is still unknown now, I guess we are getting better at being used to it. As all parents have to do in one way or another. No parent really knows what future lies ahead for them or their little ones and making that a beautiful instead of scary part of life is important.

We are waiting for winter to finish before booking into hospital to repeat all the tests that we did before to see if anything has changed.

Our daughter is on chronic muscle relaxants that help to alleviate some of her symptoms to make her physical development journey a little easier for her.

Currently she is about one year delayed with the ‘normal’ development milestones.

At the same time we are seeing any and every recommended doctor interested in unusual conditions and diagnoses.

As a close friend of mine says…when you find another thing it isn’t you get to check another thing off your list, that is a step in a positive direction for sure.

Knowing what is causing the symptoms could provide the clarity needed to understand the condition, and to treat it. This is what is frustrating about the time consuming task of looking through a hay stack for a needle. Perseverance is key. Balance and accepting that right now we are doing all we can and that is enough, is hard but so important.

Treating symptomatically while waiting for a diagnosing is what was initially proposed to us hence accepting the short term use of strong chronic medications.

To then find out that we may never get a diagnosis and may have to treat the symptoms for the rest of my child’s life is hard.

Accepting chronic medication when you don’t really know if it is necessary is hard.

Making the choice for another human being to be ‘doped’ up feels wrong to me and no matter how accepting this is also hard.

However having said all that, do we know if she would be at her current stage of development without the medication?

It has helped her ‘episodes’ in a huge way minimising the stiffness in her muscles and the duration and frequency of the episodes drastically. This assures me we made the right decision.

However, deciding to use this specific medication was influenced by the diagnosis of one of her conditions symptoms as ‘Dystonia’ which is a result of an underlying condition and pertains to the erratic muscle movements she suffers, and also the stiff seizure look alike ‘episodes’ that affect her multiple times a day.

What we noticed a while after starting the medication is that her ‘Dystonia’ may not actually be that after all. It is similar yes, but her form of it is affected by environmental factors such as temperature change or mood. This does not fit the ‘Dystonia’ description and therefore perhaps there are other medications that would assist in alleviating her symptoms better.

Currently we are adding a second medication to the mix. Both are muscle relaxants. The first has shortened the length of her ‘Episodes’ also how often they happen. But for her erratic muscle displays it hasn’t helped as much as we would like. So the second medication we are adding will hopefully stabilise her muscle movement, allowing her to cope better with gross and fine motor skill development.

We are also exposing her to physiotherapy, occupational therapy and music therapy all to assist her on her journey of manual learning.

What I mean by this is that it seams like her brain learns in a repetitive manual way, creating pathways like everyone else does through constant repetition and practise with assistance and being led by example. In a child without this different way of learning the brain and body work together in a more automatic way to create these pathways between the central nervous system and the brain.

Her development is also still in the correct sequence that are guidelines for milestones in a young humans life which we have been told is positive. This does make accepting that it may take a lot longer for her to reach her goals, but she will in fact reach them, a littler easier.

Another difficult part of the acceptance process is that the treatments our daughter is on are dependant. Meaning there is a weaning on and off period.

For example the medication responsible for helping her episodes and somewhat calming her erratic muscle movement displays is a dependent, so if we did want to try an alternative medication for these two symptoms it would take minimum one year out of her development if it didn’t go well. A few months to wean off another few to try the new one and wean off that one if unsuccessful then another few to wean back up to her current dose on the original medication.

That is a huge risk with her development already over a year delayed to the normal schedule of crawling walking talking etc so making this decision is extremely hard.

We don’t know if the medications she is on have have longterm side effects as they are meant for adults not children or at least have only been used in adults so far. They also come with side effects for example one we really struggle with is constipation so bam there is another medication to add to the pile to relieve those symptoms and still we are no closer to knowing the route cause…it is highly frustrating and also extremely difficult to monitor all the side effects from medicine vs her own conditions side effects

This journey is a hard one for sure and we have our work cut out for us. Accepting that we are doing our best and that each decision we have made was the best at the time is a gift her father and I must bestow on ourselves.

Slowly but surely there has to be a point when you realise as I have that acceptance pro or con is actually about balance too.

Accepting too much could land up slowing down the search for a diagnosis so holding back on full acceptance while maintaining a calm and careful watch on her responses to all our chronic treatments, physical therapy music therapy and occupational therapy will hopefully lend a guiding hand in showing us the way to her future.

Once she is able to communicate with us better and tell us how she is actually feeling it could open more doors as well as assist her in learning meditation and other calming techniques for body and mind perhaps allowing her to slowly wean herself off her stronger treatments.

So, acceptance is about balancing the choices you have made for now with the possibilities of change in the future. Always reminding yourself that life is all about change and nothing stays the same for very long really so accepting that for now the path we have chosen is is good. Maintaining that confidence is key, it’s hard but necessary. Plus, acceptance is the end of denial and everything is easier to handle once you have accepted that it is the way it is-for now.

In my position it is sometimes also hard not to focus on the problems in her life and mine for that matter, but, and this has become one of my coping mechanisms for moments of worry. I remind myself that in actuality if I had a choice I wouldn’t change her situation because then she would be a different her and I love her whole being everything she is the hard and everything else too. She is mine and I am hers and together we can do anything.

Hard is funny though, usually in life one doesn’t want to walk the hard path, and don’t get me wrong I wouldn’t wish this hard path on my daughter or anyone else. However, after all we have been through and the amazing person she is growing into, I honestly would not have it any other way. She would not be who she is without the hardship she is facing in her life, neither would I.

So, even though focusing on the hard parts is kind of what I am using this blog for, to really get into how I am feeling as I’m sure millions of parents out there are also feeling these emotions and going through the hard part of parenting too.

Talking it over with everyone helps me a lot, , you never know where your next best treatment or idea for finding a diagnosis could come from. Talk, share, support each other always.

Stay well, until next time, accept where you are currently and if you don’t like it chose to change as much of it as you can in the future…keep sharing.