In The Beginning......

In The Beginning....

In 2005 Sam was born a very happy and healthy baby.
My pregnancy and birth had been completely normal with him and for the first 2 years of his life, everything went according to plan. Sam was learning everything at the right times and was growing well.
At around 2yrs 5mths I noticed that Sam was not quite himself and seemed a little under the weather. There was absolutely nothing that I could put my finger on....and everything that seemed unusual, I could explain away due to his age and what I knew of growing up.
Some of the things I noticed happened regularly...some were more infrequent, so for quite some time, we carried on as normal.
Some days he would be overly grumpy, sometimes he would sleep more during the day. He had mild stomach pains on and off, his appetite dropped and his face looked "different". At the time I could explain all of these things away, due to him starting to grow into a toddler.
After some time (over a couple of months!), I noticed that his appetite was much reduced, yet he seemed to be putting on weight and becoming more chunky. This seemed strange to me....1. because my other 2 children had had similar appetites...but were tiny! and 2. if he was eating so little...how could he get so chunky?
At this stage things seemed to move quite quickly! Sam was now eating very little, had very little energy, had quite bad balance (kept tripping over nothing) and yet was getting still more podgy. At this point we also noticed that he was not using his potty very much at all. 
I booked him an appointment the next afternoon at the doctors surgery..just to voice my concerns. I still thought I was going mad and that he would just be given a course of something to get him right again.
As soon as he was seen and I'd gone through all the symptoms (even telling the doctor that I thought I was going mad....but knew there was something not quite right!?), she instantly referred us up to the hospital. She had not told us what she supsected, but even though Sam's condition is very rare, (it only affects approx 1 in 100,000), she had spotted it straight away!
As you can imagine...I didn't sleep much that night...and was now really worried!
The next morning Sam woke screaming and very floppy and I couldn't do anything to console him at all!
We brought our hospital apointment forward.

On 11th Feb 2008 we spent many hours in Sophie's Place at Winchester Hospital having blood tests, doctors checks, blood pressure, urine tests, temperture checks...anything and everything that they could look at on Sam....and many, many forms and questions to complete!
By the end of the day...Sam was diagnosed with Nephrotic Syndrome and was admitted into hospital.....

Please remember....
These are my experiences of Sam's condition and not a conclusive list of all the symptoms that may be present. Likewise, as I said, all the symptoms presenting individually are perfectly normal in a child of that age.


For my next post, I will dig out my (official) notes on "what is Nephrotic Syndrome"...just so you have details of what is happening inside the body.

Thanks for reading :)
Sonja xx