Brain Damage and the Medications that keep my Daughter alive after her Tumour

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Medications that keep my daughter alive.

When I used to wake up in the morning my first thought was coffee, now it’s medications. When I wake up I have to prepare Hana’s first dose of steroid, give her the daily dose of thyroxin and water control medication if she has ‘broken through’ (started peeing).  I also have to weigh her to work out how much fluid she has/hasn’t lost and then get her a drink. Then it’s coffee time! My daughter’s medical conditions are very complex so I thought I’d put up a post explaining what sort of damage there is now to her brain after having a craniopharyngioma brain tumour.

Hana was suffering a few subtle symptoms of hormonal (endocrine) dysfunction for a while, but because they came on so slowly, they were hard to pick up on until the end when things suddenly became  so obvious to us. These changes were the tumour interrupting messages in her brain. The ‘Hypothalamus’ in the mid brain speaks to the ‘Pituitary Gland’ which in turn sends out messages to other body parts to secrete hormones that are necessary for sustaining life:

Thyroid Gland, the Adrenal Glands, Growth Hormone, Sex Hormones, Water Control

Hana was showing signs of an underactive thyroid, adrenal issues, growth hormone deficiency, and the onset of diabetes insipidus before her diagnosis. The problem was that she was coping and compensating far too well for us to think that there could be anything that sinister wrong with her. She’d successfully completed her first year at school in kindergarten, positively  flourishing with her lessons, piano and swimming tuition. How could someone who was doing so well and who seemed so happy be so sick? But then things really began to intensify over Christmas 2013 and all too soon it became apparent that there was something very wrong with our little girl.

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On the back of her new medic alert bracelet it states that she is cortisone dependant and that she has diabetes insipidus. If she is ever in an accident, a high dose shot of steroid could save her life.

During Hana’s surgery the teeny stalk connecting the Hypothalamus to the Pituitary Gland was cut out. The tumour, the size of a tennis ball, had grown out of that tube, a tube the size of a piece of spaghetti. So we expected that post operatively she’d have absolutely zero pituitary function becuase there was no way for the Hypothalamus to send messages to it anymore. In turn, because the pituitary no longer receieved prompts from the Hypothalamus, it could no longer send out messages to the thyroid, the adrenals and other bodily parts to prompt them to produce hormones necessary for sustaining life.

So Hana needs hormone replacement for  bodily functions that are determined by this ‘hypothalamic-pituitary axis’. She takes:

Thyroxin (T4, a hormone that is produced by the thyroid gland as a result of stimulation from the hypothalamus and the pituitary gland). Our pituitary glands also secrete other hormones such as T3 in small amounts as well as other things. I am pushing to get her prescribed some T3 in addition to the T4 as there is a large amount of anecdotal evidence in consumer circles that quality of life improves greatly with T3 supplementation. Actually, until T4 was synthesised, hypothyroidism was only treated with natural desiccated porcine or bovine thyroid gland extract which contains t3 and a similar proportion of hormones to a functioning human thyroid gland. She has thyroxin once a day.

Hydrocortisone: This steroid replaces cortisol that would be secreted by her adrenals. We need to increase her dose in times of stress and illness. We carry an intra-muscular injection with us to give in an emergency like an accident, injury or emotional shock, if she doesn’t receive large doses of cortisone at these times she could fall into a coma and die. Lack of cortisone is life threatening. She also wears medical alert  bracelet and necklace so that if we aren’t around, a paramedic would know to give her hydrocortisone to save her life if she needed it. She has hydrocortisone three times a day.

Desmopressin: This medication controls her Diabetes Insipidus. This type of diabetes is not the sugar diabetes that you probably already know about. This diabetes affects her sodium and water balances. Because her pituitary gland can no longer secrete ‘Anti-Direutic Hormone’ her kidneys can no longer control her water balance. Without medication she would keep peeing and become dangerously dehydrated. The elevated sodium levels could eventually cause a seizure and death unless fluids are replaced at the rate of excretion. She has Desmopressin (DDAVP) three times a day.

Growth Hormone: Hana’s skeletal age is only 3.5 years. She desperately needs growth hormone injections (I will be able to give her these every evening when we are allowed them). Growth Hormone also promotes energy conversion into muscle rather than fat and facilities the breaking down of the thyroid hormone T4 to T3 (where it is then able to be utilised by her bodily tissues). We have to apply for growth hormone, the usual waiting period is a year post op but in some instances children can be proven to need it earlier. We hope that Hana will be allowed to start her growth hormone sooner rather than later as it may help us to combat the onset of Hypothalamic Obesity (more on that here). Without growth hormone multiple bodily systems are adversely affected and not to mention the fact that her school friends will be turning 7 and with her skeletal age of 3.5 years, she will be a lot shorter than them.

Sex Hormones: These will come nearer to puberty. We hope that with the right hormonal replacement therapy Hana will be able to have children of her own.

These medical conditions that we are getting to grips with are treatable with traditional medicine and we are so lucky that these medications exist because they keep our beautiful daughter alive. One doctor even postulated that she’d have an improved quality of life on these medications than she’d had before the tumour was removed. Time will tell, I hope he is right.

The other area of the brain that was damaged by the tumour, and potentially further damaged by it’s removal however, is the Hypothalamus itself. What is so terrifying about the symptoms of hypothalamic damage is that so far, traditional medicine does not have a suitable ‘cure’. If you’ve been reading my Facebook updates then you’ll know that I’m talking about Hypothalamic Obesity and Hyperphagia but these are only two symptoms of Hypothalamic damage. For more on that read this: Why my daughter is at risk of developing Obesity after her brain tumour 

As promised, coming soon is a post on how we are trying to facilitate ‘healing’ of Hana’s brain after her tumour and surgery. For other posts on our journey so far, have a look under the Brain Tumour category.

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  3 comments for “Brain Damage and the Medications that keep my Daughter alive after her Tumour

  1. February 27, 2014 at 11:12 pm

    Thank you for sharing this information about your journey with Hana post-tumour. What an enormous challenge for Hana and for you as her mother. I’m sure these posts will be incredibly helpful for other parents seeking information on how to care for their child in similar circumstances. It’s heartening to know that you have resources to improve Hana’s quality of life.

  2. Naomi R Cook
    March 2, 2014 at 7:33 am

    Thanks Virginia, times are hard and things are tough but we are also very lucky that these medications exist. Definitely counting my blessings x

  3. Aly Thabet
    March 4, 2014 at 12:03 am

    This is such an enormous challenge, I hope that you & her father will be able to continue to fight for her and that more medications will be made available that will help her lead a normal life as much as can be possible,

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