This article is from the mother of a type one son who has recently started school. She discusses ways to help other parents of children in the same situation in her blog.
Managing mood changes
July 5, 2017
Today I would like to open the doors on what goes on behind the scenes of a T1D child. What do they feel that we parents cannot see? What do they want to tell us but are too young to possess the vocabulary or verbalise their emotions? These, and many more questions, often race through my mind. Taking on the full time job of a pancreas isn’t just about calculating carbohydrates, night time blood tests or insulin pump therapy; it is equally as important to understand the side effects this disease has on your child’s brain and subsequently, personality.
It all starts with the physiology of diabetes. I will never be able to fully appreciate what our son physically and mentally feels when he experiences a hypo or hyper, I can only describe to you what I have been told. According to the experts: diabetics, when a child is having a hypo they feel weak, dizzy, confused and shaky. This fantastic 3 minute video of four woman describing how they physically feel and mentally react during a hypo is well worth your time.
It is quite common for a T1D to suffer from ‘hypo-unawareness‘, particularly in young children who are naturally less aware of their body and how it functions. Hypo-unawareness is physically dangerous, but it is also a mental battle for the patient and for those who care for them. When our son Noah, is feeling these symptoms his insulin pump will give me a warning alarm (caveat: there is a 20 minute, give or take, communication delay between his body and the pump) and I can treat the hypo for its physical effects.
There is no medical treatment for the mental effects of a hypo. In our experience, Noah morphs from an adorable kitten to a roaring lion in a nano-second. He goes from “Mummy I love you to the universe and back” to a vein-popping, red faced animal screaming inaudible words that make no sense anyway. Unlike typical child-like tantrums (which he naturally has too, yey! these appear as is if from nowhere.
Sometimes his behaviour is quicker to burst forth than the pump’s warning alarm and we can tell he is having a hypo simply from his monumental meltdown over inconsequential nothingness. Even though I know his diabetes is just ‘having a conversation with me’, I confess, I sometimes feel embarrassed when we are out in public. There are occasions when I have been in the supermarket or walking down the street and Noah’s diabetes wants to have another ‘chat’ with me. Millions of parents know the look you get from strangers on the street; you know the one, it appears that you cannot control your own child. I get those same looks but sometimes I just want to scream ‘you have no idea what he battles with inside!‘
Noah can also become confused during a hypo and he finds it difficult to concentrate. Whilst these are less fiery side-effects they cause me more long-term concern than the tantrum-style behaviour. I know the meltdowns will become easier as he gets older but he has already started school and now I find myself wondering how hypos will affect him in the future. How will Noah cope with T1D together with his education? Will it impact his academic ability? How can we help him now to learn to overcome these issues down the line?
According to this scholarly article we are already using the best possible therapy to support Noah’s mood and behaviour. ‘Continuous subcutaneous insulin infusion’ or insulin pump therapy has been very effective in reducing the frequency of hypos in T1Ds and the results show improved mood and behaviour changes in young children. So is that all that we have at hand to help? My answer to this is: I don’t think so.
Whilst it is notoriously difficult to measure neurological impact of T1D and, from what I can gather, is something that experts vary in opinion on, frequently the following cognitive elements are reported to be affected by T1D: intelligence (general ability), attention, processing speed, memory, and executive skills. I am not a scientist and I haven’t done any research into this, I am also only two years in as a T1D carer but my firm belief today is that all of these cognitive domains can also be greatly influenced by the parents, teachers, siblings, social circles, mentors and extended family etc. who surround the child.
And what about hypers? Someone once described to me that a hyper is like having a massive hangover, but without the nausea part. The patient is very thirsty, has severe headaches and lethargy. It isn’t rocket science to realise that these are not attributable feelings to a productive day at school or work.
For the last year, Noah experiences an (as yet) unresolved hyper every morning after his breakfast. His glucose levels soar, sometimes triple the amount of a non-T1D and try hard as we might, we haven’t yet fixed this ‘bug’ in his daily routine. Nevertheless, off he marches every morning to school, feeling like he drank himself under the table the night before. For now, I simply admire his strength but I worry about when he becomes a teenager, how will he find the will to keep concentrating on math, or history or grammar when he mentally becomes aware that he has a choice?
And speaking of teenagers, puberty is a notoriously challenging period for many diabetics, but I will leave this topic for another day, another year even. The underlying point here is that T1D presents enormous challenges both physically and mentally. Both require a bachelor degree level of understanding to deliver optimal short and long term care. Both take place behind the scenes and in front of a crowd but T1D is so massively misunderstood by many (including me before my son’s diagnosis) that raising awareness and understanding is a monumental challenge, but one that many can be proud to be passionate about.