The Torture of Waiting..

Waiting for a diagnosis is one of the most difficult things a person can experience, especially to a parent of an undiagnosed child...when waiting on test results especially of a serious nature is almost unbearable at times...but it seems to be a common factor in the life of a parent of an undiagnosed child - you are forever waiting for a final diagnosis as to what could be wrong with your child but while waiting for that final diagnosis that may never come you have the waiting of the many different test results your child undergoes...You are continually counting down the months, weeks, days & hours till the next appointment where you hope to get the test results or you are watching for the postman every single day wondering if they have that all important letter that you are desperately waiting on, every time you see the letters on your doormat you are looking for the all too familiar hospital letter hoping that you will finally answers but secretly dreading reading it at the same time...a strange combination of feelings.

Roo has had many tests and we have endured the wait till the next appointment or waited for the letter to come so you would think that we would be used to it by now but it doesn't get easier...it feels like it gets harder every time especially as Roo gets older..

As you will know from previous blog posts, Roo had 2 EEGs - one of which was just an hour long and showed higher wave frequency than normal in his brain but no answers to why so next stage was a 24hr EEG which he had nearly 5 wks ago...While waiting on the consultant to do the ward rounds he went to check the results then came back only to say that he wanted to show them to the other consultant to study so we will get the results in our next Neurology appointment in 4wks time...I was happy with that as thought the month would fly by in no time...the first 3 wks flew by but then we came to the final week of waiting and I noticed my anxiety levels rising, worrying about the outcome, worrying about Roo future ...Every morning I woke feeling sick as the day got closer and closer...

I felt so silly as I have waited on results before and never been that anxious but I think its because my biggest fear has been Roo developing epilepsy...Ever since he was a baby at every hospital appointment we have always been asked - "any seizures yet?" and we always said no... I always think that from the way they ask that question and the fact they ask it at every appointment makes me feel as though they are expecting Roo to develop seizures and to me that's terrifying as I know so little about it and what I hear from others is not something you would wish on anyone....when the consultant mentioned that it sounded like Roo could be starting to develop epilepsy I was terrified and worried...I thought it would be straightforward to get the results but I'm realising that isn't the case...

We had the neuro appointment on Tuesday past and the neuro then comes out with " I haven't had time to look at the results , they are still upstairs!" I couldn't believe it, was gobsmacked...4wks of torture waiting and  worrying all that week only to be told that we would have to wait for a further 2 wks so that he could get round to studying the EEG and inform us if its the dreaded E or not.... do consultants not realise how torturous the waiting is and then to be told that they haven't had time to review the results and do the reports is disheartening...I came away so depressed & annoyed that we still had no answers, still did not know if Roo has E or not, and we still have the waiting to endure...for once I wanted and hoped to walk into an appointment and for them to actually say " this is what we found, this is whats wrong and this is what we can do to help" but nope as every appointment we go to its always " I'm sorry we don't know why he has so & so", "we don't understand why he has those issues", " we think its part of a syndrome but need to do more tests".....it just never stops...

The waiting is whole set of emotions itself... as well as being so stressful you also become "impatient" as you just want to know there and then, you want to be in control, you want to solve the issue and you simply just want to KNOW but instead you are told to wait and it makes you feel like you are trapped in a room with no windows and you are waiting to be set free...Frustration is another emotion often encountered as you are frustrated with having to wait around for the doctors to do their job, you are frustrated at getting no answers & you are frustrated at how long it takes them to do it...you wonder to yourself why does it take so long, surely it can be done much quicker in this day and age. Then there is the anger at the consultant not being organised and having the results ready for appointments, angry at them for making you wait longer. Then you have the sadness and depression that comes next... You just simply feel so overwhelmed with everything, with all the different emotions going on that you just feel like walking away from it all sometimes...

So we have gone a full circle and are now back in the waiting game, waiting anxiously for the Neurologist report to drop onto my doormat....