Tag Archive | type1

Up-rising against DKA

My son was repeatedly mis-diagnosed over a period of several years (from age 3-9).

Approximately one year later (aged 10 in 2012) after moving house to a different health authority, my son was rushed into hospital severely dehydrated and in DKA – Diabetic keto-acidosis – a life-threatening complication of Type1 Diabetes that is wholly preventable if addressed quickly enough.

When my son got ill, I had not trusted my instinct as I had been repeatedly told it was not Diabetes.

I had been told that I was imagining his symptoms and that I was a hypochondriac mother. (Munchausens by proxy was strongly implied but not mentioned by name.) Our GP at the time told me not to come back, and that if I did they would have to deal with me!

This mistreatment devastated my confidence, and nearly cost my son his life.

It seems very unlikely indeed that I ‘imagined’ Diabetes and then he got it.

But a mother’s instinct was completely mocked and discounted.

He only just made it through the night after diagnosis, but thankfully he made it through and recovered after a week in hospital.

I now strongly believe that my son’s Type1 developed slowly along the lines of LADA (LADA stands for Latent Auto-immune Diabetes in Adults, which is Slow Onset of Type1 Diabetes – atypical for children, I know, but not unheard of) and I now know that, although initial urine tests seemed to be negative, a blood test would have detected antibodies years before the full-blown disease manifested itself. Blood sugar could have been tested. Neither blood tests were done.

Far too many children are ending up in DKA after missed diagnosis or misdiagnosis of Type1 Diabetes. Far too many children are dying because DKA is missed and left untreated.

Here is a reminder of the typical ‘Four T’ symptoms of Type1 Diabetes:

• Toilet – needing to go to the toilet much more often
• Thinner – unexplained weight loss
• Tiredness – unusual tiredness
• Thirst – excessive thirst

And a couple of atypical symptoms:

• Tummy – stomach-ache after eating
• Thickened skin – this is an atypical symptom which I noticed only because my son’s skin was rougher than his siblings, but both of these symptoms have been mentioned by other families of children with Type1.

We only had two of the typical symptoms – toilet and thirst, so don’t wait until you see all the symptoms to act.

Above all, trust your instincts, educate yourself, and if you suspect Diabetes don’t allow yourself to be fobbed off by arrogant and uncaring doctors. Know your rights. Get a second opinion if necessary, and don’t stop fighting until you know your child is safe.

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Review of the Decade so far!

Shalom!

It has been a very long time since I posted (for those receiving this post on facebook, you can find my previous blog posts on http://messianickah.wordpress.com/ )

In the three or more years since I posted, a great deal has happened to us. Firstly we have lost three babies – identical twins at 14 weeks due to TTTS (twin-to-twin transfusion syndrome) in 2010 and then a singleton in early 2012.

My Dad died after a long illness in February 2011.

The very next weekend we moved from the city to a very remote location in Devon where we had no internet access (even dial-up wouldn’t function due to the very ancient split-line technology!) We have now moved again to a slightly less remote location in Cornwall. The timing of this original move was extremely painful, and a terrible wrench for my mum who was left behind.

In January 2012  our middle son was diagnosed with Type1 auto-immune Diabetes, a week after my last miscarriage. Again, the timing of this was extremely hard. Type1 Diabetes is often called Juvenile Diabetes, since it is often (though not always) diagnosed in childhood. This was a shock but not entirely a surprise – I had suspected diabetes for a very long time indeed, although I did not know the difference between types 1 and 2. More on that later, as it is a BIG subject and has utterly changed our lives as a family.

My eldest son has now turned 18 and left homeschool for Sixth Form college at the school where his dad works, which has made for a much easier and pleasant transition. For those of us left at home though it is a challenge to adjust after having him at home with us for almost 15 years! It is truly a life-change for me as well as for him.

The eldest two joined Scouts and Explorers (the younger two tried cubs and Scouts but couldn’t get on with it). I also started as a helper with Beaver Scouts, but had to give it up when I was without transport. I hope to take it up again this year.

We were sadly forced to sell our house at a loss in 2012 after our tenants did a very good job of destroying the place (and we, being green and naive at the time had not thought to obtain landlord’s insurance, or even a deposit – the tenants were people we knew who were down on their luck and we thought we would do them a favour, which makes what they did all the more heartbreaking).

So we are in rental accommodation again with no hope at this moment of buying a house again, sadly (unless our situation changes). The one good thing about that is that rental prices where we are now are fairly reasonable and we have a much bigger house than we originally left.

We have been in this house now for just over two months, and we are still in a mess! I am slowly going through everything trying to streamline and adjust to our new circumstances (with no garage or shed, and not allowed to use the loft space, which does nullify the extra space somewhat).

In between leaving our own home and coming here, we actually moved in effect five times: to an enormous rental house in a village in Devon, but which we had to leave after flooding. Secondly we lived for almost three years in a much-to0-small bungalow in another very remote village in Devon, but were flooded out after just a month in August 2011 and had to stay in a cottage temporarily. We moved back into the bungalow in October 2011. The bungalow was located in the most spectacularly beautiful countryside, with farmland all around. Sadly the experience was marred by cluster flies that we couldn’t get rid of, and crashing my car which made the whole of 2012 a very difficult year for me, with a 7 mile walk to the bus stop, we didn’t get out much!

Our new location is less remote, being 5 miles outside town instead of 15 miles out. At a pinch, if I were without transport again,’ it would be conceivably possible to walk to the local post office which is a couple of villages away, or even into town if I needed to.

However, after more than 10 years with a non-descript semi-diagnosis of CFS (‘chronic fatigue syndrome’) I finally obtained a more firm diagnosis of ME (‘Myalgic Encephalomyelitis’) again, another huge subject which merits further discussion. It’s not a diagnosis I am pleased to receive, and I still hope that it is wrong and have spent the last few months persuading my new GP to run tests to eliminate every possible other thing it could be, without any helpful results so far.

I have not found a suitable fellowship since we moved, and believe me I have looked very hard indeed. There used to be a Messianic Fellowship in Devon some years ago but it is long gone now. I have tried to make friendly links with Christians in the area though, and visiting several different Salvation Army corps in Devon and Cornwall. Sadly none of them are very close by, but I tend to be most comfortable with The Salvation Army as it is an active, working church. I have tried without success as well to find believers friendly to Israel who would be interested in forming a prayer group, but I’m sure that will come about in the L-RD’s time.

So all in all, this decade has been a very hard one so far, but I am confident that with this move, things are looking up, and I am looking forward to a year full of blessing.