Tag Archive | Type 1

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.

Trim Healthy Mama?

A few years ago the Trim Healthy Mama diet was recommended to me, so I read the book, and looked at the recipes, but found it too complicated and of questionable scientific basis, and so I never actually tried it.

But the recommendations keep coming, and I see that the diet has become enormously popular in the US, and has a growing following in the UK. I joined the UK THM group on facebook, which is friendly and helpful. (The main American group is enormous and far too high volume for me to keep up with).

One of the things that I find attractive, and one of the reasons it has been recommended to me again and again is that THM is good for keeping your blood sugar levels balanced – something that’s important for everybody, but especially those with a tendency toward insulin sensitivity, pre-diabetes and type 2 diabetes (and that of course includes women with PCOS who are susceptible to all those things due to the nature of the endocrine disruption that PCOS causes).

So I am investigating Trim Healthy Mama again. I think my book is with most of our other books in storage, which is frustrating. I have no idea when we’ll be in a position to retrieve them. But there is plenty of information on the web, including the facebook groups, if you want to follow the diet without getting the book, or before buying the book, if you decide to.

You might like to start with these:

http://gwens-nest.com/trim-healthy-mama-quick-start-guide/

http://workingathomeschool.com/2014/03/30/freeprintables31daysofthmmeals

The diet is based on the idea of separating carbs and fats, separating your meals, at least three hours apart, into S (for satisfying) meals which include good fats and only very low amounts of carbs, and E (for energising) meals which are based on limited amounts of good carbs and low fat. It is quite an appealing idea. There are also FP (Fuel Pull) meals which limit carbs and fats, and Crossovers. I never did discover what Crossovers are.

But I am not sold on the idea that 3 hours is sufficient for your body to switch from one primary fuel to another. I remember Atkins saying that, since our bodies are used to a carb-based primary fuel, it can take several days before ketosis – fat-burning – starts to kick in.

Another thing that I found in my notebook from when I read the book is a question about a quote the authors made concerning insulin: “Glucagon helps to halt insulin’s stimulation of fat synthesis” Does it?

I’m not sure the way insulin etc is described is quite correct. As I understand it, glucagon is a hormone that tells the liver to dump stored glucose (glycogen) into the blood, which would seem to be the opposite of what they’re saying, which again makes me feel that the authors don’t really know what they’re talking about. But then I’m no expert, despite dealing with Type 1 diabetes for the past three years.

Perhaps somebody more expert in the way of body chemistry can confirm?

On the negative side of THM is their recommendation of what are commonly called ‘frankenfoods’, allegedly natural but really not at all healthy and really rather fake food, processed ingredients such as de-fatted peanut flour, glucomannan, stevia and a bunch of other things.

Here are a couple of articles which question THM:

http://stevenandersonfamily.blogspot.co.uk/2014/02/my-review-of-trim-healthy-mama-thm-good.html (the authors of THM are part of the Above Rubies network which is part of the Quiver-Full movement, so I am surprised that they would be promoting stevia if it is really abortifacient but its implication in infertility and miscarriage is something that concerns me.)

http://www.nourishingherbalist.com/4-reasons-why-im-not-a-trim-healthy-mama/

The claim that THM isn’t another fad seems a little bit nonsensical. And also, from a vegetarian point of view, I remember when one of the authors was promoting the raw vegan diet – I still have her book (and video)! There is no obvious accommodation for vegetarians or vegans in this new diet, it is very much meat-based.

So, read the articles, weigh it all up and decide for yourself. I’d be interested to hear from anybody who has tried it and loved it, or tried it and hated it 🙂

Autumn Update

autumn

When all my activities finished at the end of term before the summer holidays, I was relieved because I knew I had been overdoing things. But what I hadn’t realised was that when the adrenaline (or whatever) stopped, I would completely crash.

I spend a lot of time determinedly denying that what I have is M.E. I have eight pages of notes to bash my GP with – there are so many other things that I should be tested for, that should be ruled out before they give up and diagnose M.E., so many things they should try, so many things they could offer before they tell me that “there’s nothing we can do”. But this thing of feeling terrible when you stop, this ‘post-exertional malaise’ is typical of M.E.

The whole summer was essentially ruined because I was too ill to go out – despite living a few minutes’ drive from the beach, I wasn’t able to get there. I wasn’t even able to sit out in the garden. I haven’t been this ill for a long, long time.

So I haven’t resumed Scouts or Guides, and I have given up Boys/ Girls Brigade, with no plans to take it up again any time soon. I had another reason for dropping Scouts and Guides – after nearly two years of volunteering, neither of them had bothered to do a CRB check (or DBS as I think they’re called now). Neither had they sent me for any training, despite me repeatedly asking for it and indicating that I was serious and wanted to be a uniformed officer. In fact, at one stage I was asked to take over the section I was working in, and I indicated that I would be interested to do it, with help, but the help wasn’t available.

It seemed to be the case that it was completely up to the volunteer to ensure that they have the correct training and certification, and nobody seemed bothered. I wasn’t prepared to carry on in the position where, if something when wrong, I could be liable. That really isn’t acceptable.

There were a lot of things about Scouts in particular that opened my eyes to bad practice and some of the inappropriate people involved in it, and I have to say that I would be very, very reluctant to put any young children of mine in a youth group that I hadn’t investigated thoroughly, or that I could perhaps be personally involved with. The willingness of parents to leave very young children with people who are really not at all suited to be working with children amazed me. The stress of that is something that I am very happy to be leaving behind.

I have had approximately ten weeks rest now, and although I’m not really feeling better, I am hopeful that my GP is now willing to offer me something since he has discovered that my blood pressure has shot up suddenly (although he doesn’t know why – he likes to blame it on my weight, but I haven’t put any on in the last year, and this time last year it was basically perfect). I have no idea why, but hopefully some medication might start to make me feel more human again.

Unfortunately, I am cross that in all that time, being unable to go to church, I haven’t had a single visit or even a phone call. I have been getting more and more cross about that as the weeks have gone on. I assumed that they knew how ill I was because my eldest son is a bell-ringer and sees them every week. But he told me last week that my husband told them I was “fine”. Because apparently, from experience, this is how he deals with things. They have to be private, nobody else is to know, in case we worry people. Please.

Really, am I an awful person for wanting to tell people I am ill and need help? Should I be worrying, like he does, more about everybody else not worrying?!

Needless to say, I have become progressively more depressed and distressed over the last ten weeks. But part of that is to do with having too much time on my own to dwell on all the trauma and distress from the events of the last few years. While I was busy, I thought I was moving on to a new normal. But now I am right back in that dark place of grief.

I have continued to wonder about adoption. One of my online contacts had got to the point of being approved by panel, but then decided that she couldn’t go ahead. It’s huge. Taking on a traumatised child – even a baby – is so much more fraught with difficulty than having a baby yourself. If I manage to get my health to a point where I could consider going ahead, do I have the emotional strength to cope?

Additionally I have had the stress of having to make a formal complaint about my boy’s paediatric diabetes team. I won’t bore you with the details right now, but suffice to say that we have elected to transfer hospitals in an effort to secure a better service. But this has been stressful and upsetting to say the least. But I have done it.

I discovered today that my old friend’s wife, the one who made a fuss a few months ago that I hadn’t enthused about her pregnancy, has blocked me on both my accounts. I don’t care much about her to be quite brutally honest. She is a shallow, selfish character who would never even want to bother trying to see somebody else’s pain or point of view. I felt like sending him an angry, ranting message or unfriending / blocking him in retaliation. Instead, I just sent him a message telling him that I am sad.

When you have lost babies, or have a sick child, or you have to deal with ill health, you are going to have some level of underlying sadness. I would love to just get happy. I want to live, I want a full life. I just wish I knew how.

My next post will be happy, I promise.

Annual Review

type1

On Friday we had a Paediatric Diabetes clinic appointment and Annual Review. It should have been in January, to give you an idea of how shambolically incompetent our current healthcare providers are at the outset.

Ds’s hba1c, the average measurement of blood sugar over the last three months, has risen since we have been on the pump from 7.3 to 8.3. We were told we weren’t doing well enough and that the pump probably wasn’t appropriate for us. I argued that we would do whatever it takes to keep it, since it has been utterly life-changing in a good way, to the same degree that suddenly having to inject insulin was life-changing in a bad way. The meeting was combative and left Ds distressed and in tears.

On Saturday morning I woke at 4am absolutely furious, because for 2 and a half years we have had the most appallingly poor and low level of care. I have wanted to transfer out of this health authority; the only reason we have stayed is that our pump of choice is not supported at any other local hospitals as far as we know.

A brief overview of the ‘care’ we have received so far:

  • We were released from hospital without enough test strips to cover the weekend, and we were told by our PDSN to inject insulin without testing! On the advice of the national parents group, we went back to the hospital who were happy to supply us with extra strips.
  • Our PDSN routinely ignores calls, texts and emails. He is currently on long-term medical leave, but did not bother to let us know.
  • His inbox is supposedly going to the new additional PDSN but we didn’t hear from her either. In fact, she has been in the practice for over 6 months but we were not given her number until Friday. Either the calls are not being forwarded, or she also routinely ignores them, as we have not been able to get hold of her through his number, nor has she bothered to get back to us.
  • After the initial week of visits, we were left completely to our own devices, and were left to cope for 6 months without any lantus (it turned out we were injecting it wrongly, but we had to discover it for ourselves). Controlling the blood sugar during that time involved 2-hourly bolus injections day and night. But we had no help, visits or advice from the PDSN. The Consultant, during this time, suggested it was due to insulin resistance and did nothing to investigate or help us.
  • Despite the above, we managed at that time to keep the hba1c to 7.3. In fact we were originally refused a pump because our control was ‘too good’!!

Overall, I have been disgusted with the absolutely total lack of service, lack of contact, lack of help and lack of empathy.

It really isn’t acceptable for a child to leave the clinic in tears, angry, upset and distressed, frightened that he will have his pump (which makes life worth living as far as he is concerned) taken away.

We work bloody hard, and to my mind, we should be congratulated and our dedication should be acknowledged. Instead, the consultant is patronising and mocking. He dislikes our lifestyle and philosophy, the fact that we homeschool, and takes every opportunity to criticise. He told us on Friday that we should consider school now because Ds ‘obviously’ isn’t getting enough exercise (he has put on weight since the last appointment). I know, however, from conversations on the parents list and with other parents I know personally that the biggest complaint parents have is how badly the schools care for and manage their children’s blood sugar. Only last week we were told a story of a child who had refused to go on a school trip to Germany because she did not feel confident about their care. The only other 2 children with Diabetes who went on the trip ended up in hospital with Diabetic Ketoacidosis.

School would not be helpful in our case for a number of reasons that I won’t go into here, but suffice to say that the consultant’s tone added to Ds’ distress and fear. It was completely unwarranted and unhelpful.

It really makes my blood boil that they are threatening to take the pump away. If we had had an adequate level of help, I am sure that we would have had much better results.

Interestingly, on the way out, we met the family with whom we started the pump trial. They told us that they are having EXACTLY the same issues. Their hba1c has gone up, they are finding it hard to manage, and control is more elusive than it was on injections, but the benefits for the child are immeasurable and they don’t want to give it up. Needless to say, they also have the same issues with the PDSN.

There is no doubt that using a pump is much more complicated that injections. Leaving us on our own to figure it out is absolutely ridiculous. Threatening to punish us because we haven’t managed to figure it out on our own is unbelievable.

So at this point, depending on whether and where we can transfer and still keep our pump, we have every intention of transferring out of our current health authority. Hopefully, this pattern of incompetence, apathy and punitive, unhelpful attitude is not prevalent throughout the country.