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Showing posts with label tests. Show all posts
SAY no evil, hear no evil…..
Wednesday, 18 March 2009
Its been one of those mornings….I know some of you are new to my life…so you may or may not be aware of the fact that Deion is going through some tests at the moment. He seems to be losing some muscle tone, developing squints and having trouble swallowing. So he is undergoing all sorts of investigations…Deion had an appointment today at our local hospital. He visits four different hospitals, but we were local today.
Now I often moan about how the system works with regards to appointments. This particular clinic schedules appointments three minutes
apart…I kid you not…ridiculous really, by the time Deion drives in the room in his electric wheelchair, takes out a couple of potted plants and a table leg…our time is up. So needless to say, the clinic always runs late and although our appointment was at nine minutes past nine, the clinic was already running about six hours late by then…(you do know I tend to exaggerate by now right?)Now, Deion has been going through this for a while, and all the consultants at all the hospitals have his detailed notes….so I am under the mistaken notion that they should vaguely know Deion, his history, our family history ever so slightly. Some of these consultants were even Aaron’s consultants too.
In the beginning, I expected to have to talk to these consultants a few times and ask them to be careful about what they say. Of course, while most eleven
year olds wouldn’t have a clue about muscular dystrophy, progressive neuromuscular and life curtailing illnesses… Deion does, because its all the same doctors, the same words, the same tests and same fears as when Aaron had to go through it.So I have asked them to be careful what they say in front of him. Deion is fine as long as he knows what’s going on, as long as he is told they are just ruling out, looking at and don’t bandy around these awful words in front of him, he can cope.
It breaks my heart to see his little face drop when they talk about mitochondrial cells not performing…and to be fair to the docs…what eleven year old should understand this???? Well!! Deion does unfortunately. And no matter what I say, or explain, they won’t stop saying these things in front of him.
I’m not sure what to do.
Last time Deion got really upset, so this time I stepped in the room before Deion, and pre warned the consultant about Deion’s understanding of the terminology. She looked at her watch twice, obviously the three minute appointment did not allow for a mum’s pre consultation, but undeterred I went on and took up those three precious minutes.So in comes Deion, he’s a little nervous I can tell, because he’s driving is a little erratically… he ran over my toe, crashed into a chair and killed a small side table. He parked in front of the doctor, I sat in the chair next to him and she asked him how he was...so far so good.
And also, at Deion’s insistence he was wearing his T-shirt that says “if you can’t say anything nice…don’t say anything at all.” We thought this would have gotten the message across….
Then she turned to me and said, “There’s definitely something neuromuscular going on, we need to see if it’s progressive and how aggressive it is, at this point a full muscle biopsy to get an accurate prognosis is essential.”
For the love of god….did she hear nothing I said.
I resisted the urge to kick her under the desk, but she must have clocked the look on my face because she went silent and then said “oh,” very quietly.
I spent the next ten minutes explaining to Deion that nothing is certain and we are just right now trying to find out why things are harder for him now…every now and then I turned to the doctor as if she was five years old and said, “isn’t that right doctor,” to which she nodded and smiled.
She's lucky Deion wasn't in Yellow Lightning mode...he would have zapped her!I know it is hard for docs, I know they are under pressure, and on time scales that are nothing less than ridiculous. But I was so clear….
Is it me? Am I trying to protect him too much? But we don’t know anything yet, and we are sooo trying to be positive that the news won’t be bad, so shouldn’t we be ignoring all those words to a certain degree? Or is it just burying our heads in the sand?
The thing is, we were accused of doing that with Aaron, but we felt that if we stayed positive and fought, he would too…and he had seven and a half years when they gave him six months…so how can it be wrong?…there may be no connection, but we think there is…..
Well, Deion got rewarded with a detour on the way back to school and a yummy extra breakfast, all the while we made up really crap jokes like...'what do you call someone who totally ignores everything you say?'...' a consultant' cue raucous laughter from us and puzzled looks from fellow diners! and he went into school cheered up, giggling and pleased to have a secret that we’d played truant for an hour! I’m sure there will be more questions tonight, so I guess I’ll just do what I do and make sure he feels safe now!And I’m very proud of myself, I didn’t cry until I was safely indoors, and only threw two plates….
Big sigh!
More Tests!
Monday, 16 February 2009
Deion has to go into hospital tomorrow for some tests on his central nervous system. The doctors are still trying to find out why Deion is losing muscle strength, so we are off for another set of tests, maybe we’ll get some answers this time. He should only be in for a day or so.
I’m packing his bag as we speak, which seems to include rather a lot of video games and a whole rotisserie chicken for him to scoff as soon as he can eat again...he isn’t bothered about anything else!!!
So if I’m not blogging for a couple of days, it’s because I am at the hospital with Deion, or if he’s home, catering to his every need!
Back soon
Sally and Deion xxx
Not having all the answers!
Tuesday, 3 February 2009
Thank you everyone for your e-mails and messages of support for Deion and what’s been going on. A few people are asking me what is wrong with Deion with regards to the new tests.
The simple answer is, “we don’t know.”
Deion’s elder brother passed away from a muscle wasting condition three years ago. At that time Deion was tested for similar conditions as he was also a wheelchair user and ‘vulnerable’, but nothing was picked up.
Deion’s condition was always separate from Aaron’s because Deion was a preemie and had a brain haemorrhage resulting in cerebral palsy. Yes, there were physical disabilities, but we were not expecting anything new to show up…
Well, life just isn’t that simple is it?
About 18 months ago Deion developed a squint right out of the blue. At first the doctors thought he was having small absences, so ordered tests for epilepsy…all negative. The squint got worse, and then was in both eyes, so they had to correct it.
Then he started getting headaches, so the tested for brain swelling or tumours…still negative thank goodness.
Next Deion began to have trouble chewing and swallowing. Normally Deion could reduce a man size meal to a mere smudge on a dinner plate in seconds, but he was taking half an hour or more to eat small portions, and was having to swallow six or seven times for each mouthful to get the food down. More tests, which showed the doctors that chewing was becoming unsafe, then he had some weight loss, so food supplements were prescribed and now we have to closely monitor all his food and textures.
And now Deion seems to be losing some of the use of his trunk muscles. His head is a little floppier, his legs are weaker when doing his exercises, and sitting straight is harder. So his wheelchair has lots of added support and a head rest for him.
Deion has always been incontinent, but he used to have some sensations in his lower abdomen, now he doesn’t seem to have any.
But we still don’t know why.
The doctors are testing for ‘myasthenia gravis’ (literally meaning grave muscle weakness) ‘muscular dystrophy’ and ‘mitochondrial myopathy’ (which Aaron had).
Now, we don’t particularly want any of these illnesses, but if we had a choice (I know, I know, we don’t…) but we will take the myasthenia, as it can at least be controlled and isn’t necessarily life shortening.
Now it will seem outrageous to many of you to hope for an illness, but any parent in our position will understand. There has to be a reason for the change in Deion and his abilities, so we want the reason to be as non-life threatening as possible…simple…if only.
So Deion is still undergoing tests, he is due to go back into hospital on the 17th Feb for tests on his central nervous system, and we will see what they tell us.
One thing is for sure, Deion is Deion, he’s strong and determined and whatever we have to deal with, we will…because lets face it, we have no choice. And although it feels a little de-ja-vu, we are staying positive that we are not going down the same road we did with Aaron. We have to believe Deion is here to stay, no matter what any test or doctor tells us, because to live any other way is not living, it’s waiting for something to happen…and that’s not what we do!
So thank you for your support, I know there are many, many families in our position, so I am wishing everyone of them well. I know how hard it is to stay strong, but look in your child’s eyes, see the love in them and tell me that is something that you will ever stop feeling!
Fight, fight, fight!!!
Take care
Sal xxxxx
