We Have Hit The Type 1 Rocky Road!!

Claudia aged 7 Type1

 

 

This has got to be the hardest blog that I have ever had to write.

Claudia has been diagnosed Type 1 and Coeliac for over 5 years. We know her thyroid is on it's way out too. She has a white/grey streak in her hair which they believe is linked to Waardenburgs Syndrome, still not confirmed or fully explained.




Claudia's first day at High School.

In September 2012 Claudia started High School and I went back to work full time. Not ideal I know. In the current financial climate with 5 children we needed another income. At parents evening, Claudia had glowing reports from everyone of her teachers and  a letter home saying she was near the top of her set.

In October 2012 we attended clinic, Claudia's HbA1c was 6.5%. Which was expected.

In December 2012 we attended clinic, Claudia Hba1c was 7% this time. At this appointment it was notated that Claudia had lost weight, she was always hungry. I raised my concerns that I didn't think Claudia was OK, as she was constantly tired and looked unwell. I just couldn't put my finger on it, but in my heart I knew all was not well.

Clinic said not to worry,as her HbA1c was fab and they took some bloods to check her thyroid function.

January 2013:
I had constant phone calls and texts from Claudia saying she was hypo and felt rotten. So I reduced her basal progressively with the support of our clinic.By the end of January Claudia was down to 4 units of basal insulin in 24 hours. I checked her BG meter and the readings that she had given me were correct her CGM was also confirming the information. The only thing that was questioned was there were BG readings carried out within minutes of each other. Claudia just said, "oh I didn't wash my hands properly". We had no reason to not believe her, as sometimes this can happen if they are she is in a rush.

January 2013 Claudia was  admitted to hospital to check for Addisons Disease and a full blood screen. All came back negative/ok apart from the thyroid, which was expected. Whilst in hospital, she didn't have any hypo's and her levels were fine.

We were discharged non the wiser. I just knew something wasn't right but I had no idea what was wrong. I was really worried.We went home and Claudia went back to school and I went back to work. The hypo's started again but not as often and I gradually increased her insulin once again.

We attended clinic again in March 2013. Donald took Claudia as I had to work. Claudia was unhappy as she prefers me to attend clinic with her. I sent Donald with a huge list of concerns as I was very worried, Claudia had lost more weight, she looked tired, pale and was really moody!! Donald actually gave the team the iPad to read as it was such an epic.....

After 5 years of HbA1c's between 6.1 and 7.4, wait for it 10.6! 
Claudia was hysterical for several hours, the team were confused.It just didn't make sense as her CGM reading and the readings from her BG meter told a different story. Claudia was sent to have further bloods taken. I had this news via text, I felt sick and cried. In fact I was hysterical, thank goodness I don't share an office. Something wasn't right but I didn't know what. It brought back the day she was diagnosed, when she was so ill and I thought she was going to die.I had those feelings again.it's not a place I thought I would ever visit again.

After the initial shock, and I had calmed down. I began thinking, this just doesn't make sense. When I got home from work I had a long chat with Claudia, who was still hysterical and saying the HbA1c was wrong. The machine was wrong. I asked her if there was anything she wanted to tell me and if she did anything that might not be ok, if you had Type 1 Diabetes. Claudia was very angry and said no. I had no reason to doubt her as she had always been very responsible and mature above her years when managing her Diabetes and Coeliac diet.

That night Claudia slept in my bed. I didn't sleep as I checked Claudia every hour. I felt sick I didn't know what was happening. The next morning Claudia went to school and I went to work, in truth I just felt sick and was very worried.

It was complete coincidence that I had ordered 2 new meters for Claudia. I decided to start using 1. When I got back from work I decided to check Claudia's meter. Claudia had been with her friends as school had finished at lunch time for Easter. I looked and thought gosh that's a huge difference. Her BG's went from 1.1 to 16.5 !!!,  2.2 to 12 etc. I shouted for Claudia to come down. I started to question why such differences, she got very animated, angry and started to cry. At that point I knew I had uncovered something but not sure what....... and I certainly wasn't prepared for what she had been doing and why.

Claudia had been:

Claudia had been deliberately falsifying her readings by, leaving her hands wet. This gives an artificially low reading.
Applying pressure to her CGM which alters it's accuracy.
Claudia had been taking glucose,on purpose when she didn't need too.
Claudia had been pulling her cannula's out deliberately and so much more....
I have promised Claudia I wouldn't blog everything.
Impressive in a very tragic way as her Diva had out smarted the Clinical Team and me for months and discovered ways of cheating that had never even occurred to me.

Why I asked, why Claudia, don't you know you are damaging your body and making yourself ill.

Claudia's response:

You have have gone back to work and left me.
It scares me when you are so far away.
I even pulled my cannula out and you didn't come and put it back in. I had to do it myself.
You are not there to collect me from school anymore.
I am just scared when you are not close, I need you at home.
You don't always come to clinic, you let daddy take me.
I hate diabetes and I hate you working.

Looking back I can now see the tell tale signs:

Cannula's coming out on a regular basis.(never happened before High School)
Lost blood glucose meter's.
Watery blood drips in the bathroom.
Several low BG readings within minutes of each other
Increased Diva episodes !!!!!!!
Constant marks/scratches on her forehead and scalp.
Huge quantities of glucose tablets being consumed.
She was reluctant to show us her meter.
CGM failing on a regular basis and being pulled out.

How did I miss all the warning signs? What could I do to make her feel better again and stop her from harming herself. I felt like the worst mother in the world, how could I have got is so wrong. Had I been to strict with her management of Type 1 and Coeliac?

Claudia is now attending clinic once a month. In 4 weeks her HbA1c has come down to 8. Claudia has seen a psychologist and talks to the school chaplain. I feel totally drained but Claudia is looking much healthier and coping very well. I have to carry out spot checks to ensure she isn't "false testing" again. It is going to be a long rocky road but I am determined that we will win the Type 1 emotional battle. No-one told me how hard this would be, mum, nurse, psychologist, friend all rolled into one.
We have put realistic goals in place and targets to work towards. From diagnosis everyone has always said, "you will never have any problems with Claudia, she is so grown up and responsible". This keeps echoing in my mind.

I have been that numb and in shock that I haven't been able to cry. That's a really strange feeling.

Sharleen Spiteri - All the times I have cried, is a song that is very close as it was released in 2008 when we had news Claudia had been awarded a pump. It was such a relief I cried and this song was playing. For the first time in my life I am just numb and it's heartbreaking.
https://www.youtube.com/watch?v=pUtnQTzimMw

Everyday I have to carry on with a smile, pretending that everything is fine. In reality my emotions are in a constant whirl. Not only have I got 4 other children who need me but a husband, not forgetting work. I often wonder how everyone living with Type 1 or caring for someone with Type 1 hold it all together. I am there by the skin of my teeth currently.

Claudia looking a lot happier and healthier May 2013