We knew it was coming, the onset of Hypothalamic Damage was evident days after the surgery to remove her brain tumour, when we were still stuck in ICU. The ravenous appetite started then. We have fought and rallied against it for six months and the six month mark feels like a significant time to stop, observe, regroup and reassess. Six month marks the end of the first battle (read about the onset of our battle here…)
I dread the weighing scales, the numbers only ever go up. Somedays I simply cannot bring myself to weigh her, I just need a break from the feeling I get when she nonchalantly hops on the bloody thing, oblivious to the panic, pain and dreadful, morbid fear I get everytime I see the numbers go up. I hate those scales. I wish I could smash them against our tiled bathroom wall and never use them ever again.
Why is my daughter’s body weight morbid?
In short, because it makes her ‘sick’. The increased body weight gives her chronic, painful acid reflux and she suffers from knee and ankle pain so severe we have to use a wheelchair for trips outside the house. This way she is able to take a few steps until the pain starts, rest then walk more when the pain has subsided. Her ankles can’t cope with her weight gain, she is disabled by it.Her blood lipids are already showing signs of changes, as the weight continues I would expect the onset of Type 2 Diabetes.
What always brings tears to my eyes is seeing her try to run. Her body has transformed and warped beyond recognition. My youngest daughter saw a photo of Hana in the hospital pre-op and actually asked ‘Who’s that?’
What have we tried/not tried?
Six months ago, I started brainstorming ideas for how we planned to fight Hana’s Hypothalamic Obesity, read that here… A lot of has happened in the past six months, including a dramatic shift in my perspective of health and illness which has led me to start training to become a Homeopath. Here is where we are at:
Acupuncture: We tried intensive Lazer Acupuncutre for months. This helped immensely in the early post op weeks when Hana wasn’t ‘Hana’ at all, this helped to bring her back to us, but as yet, there are no signs that it has worked on or changed the damaged Hypothalamic tissue. I’m very happy we continued acupuncture for so long but we will take a few weeks or months off it now and intensify the other options we have available.
Central Nervous System Stimulants: We did not try Ritalin or Dexamphetamine. A box of Ritalin is sitting in my cupboard but I can’t bring myself to give it to her. Even without the new, homeopathic perspective that I am now developing I don’t ‘like’ the thought of a drug forcing her body to ‘crank’ itself up, especially when after time there is often a reduced effect and increasing requirements for higher dose, these medications are highly addictive. Her appetite is strong but not unbearable so I don’t feel the need for such a drastic drug. Yet. Ever? I hope not. Who knows.
T3 Supplementation: This is still on my list, what has held us back is that Hana appears to convert T4 to T3 (thyroid hormone) very well as she is always tachycardic at the smallest dose increase. However, I am disturbed by the fact that she is not on a bio-identitical hormone replacement for her thyroid hormones, it is for a very good reason that the body produces some amounts of t3 along with the higher amount of t4, so I am NOT happy just to medicate her with t4 – the patented version that pharmaceuticals have created. Our bodies know what is best for us. I hope to change her thyroid medication in the very near future.
Growth Hormone: In spite of being told to wait a year for this, we fought for it, got it and we started it record early post op. She has grown 4 CM and could have grown more had we increased the dose, but we can’t due to her sensitivity – that’s another story. In short, we did good with this!
Appetite Suppressants, Herbal: these are still a possibility but I’m still keen to try things homeopathically first. Hana is extremely sensitive to drugs and herbs and very prone to unwanted side effects. Plus, she didn’t like the taste of Carallumna Fimbriata. I also have my concerns about the long term use of this plant in high doses, particular in paediatrics.The homeopathic perspective is that herbs, although ‘natural’ can have similar ‘suppressant’ effects on the body as modern medicines.
Homeopathy: This is our biggest success so far. We have seen a crazy, sudden improvement in her short term Memory with Brain 1M and much welcomed reduced Hunger, the Hypothalamus sarcode gave us a blessed window free of strong hunger every day. There was the enormous aggravation from Hana’s constitutional remedy Carcinosin (cancer) that landed us in hospital, (read about that here) and the promise of a dramatic healing response taking place, effects of which we are observing this week. I have many, many more remedies in mind to try, particularly sarcodes (organ remedies) I have so much hope and excitement at the potential homeopathy has to improve her life…and my own!
Metformin:This is my catch 22. I want to continue to try and heal Hana homoeopathically and I believe that true healing will come from this approach BUT I am in a situation now where Hana’s weight is morbid and disabling, and the slower, deeper healing response from Homeopathically won’t work in time – once the weight is on, it is currently impossible to get off. Unlike Ritalin and Dexamphetamine, Metformin appears ‘kinder’ to the body. It is non-addictive and has even been dubbed a sort of ‘wonder-drug’. It lowers insulin levels (high insulin levels are common to people suffering from Hypothalamic Obesity) and therefore can help to subdue hunger levels and facilitate weight loss. I found out about the use of this drug in Craniopharyngioma patients via the Facebook page, from other consumers. This is really saying something about the shift of information spread these days. I’m grateful to the parents and brain tumour survivors for bringing my attention to Metformin. It hasn’t worked well for everyone, but when it has worked, cranio survivors have lost significant amounts of weight with it. My plan is to use it in the short term, ideally to facilitate some weight loss and to then have a break and re-start if the weight gain continues to be a problem over the years, once we’ve done more for her homeopathically. Fingers crossed for this approach, we are in to our second week.
Hyperbaric Oxygen Therapy: I am very interested in this for two reasons; firstly, it is thought to be anti-cancerous and is used by some for cancer treatment I therefore hope it may reduce Hana’s chances of regrowth. Secondly, because it is well established to play a role in healing, I can’t see why ‘Hypothalamic Healing’ will be exempt from this! We have had one session and have had a brilliant week after (which also coincides with some homeopathic healing post aggravation – more on this next time). We will rebook once we are over our cold virus (it is contraindicated to use the chamber with a respiratory tract infection due to the pressure). I will dedicate a full blog post to Hyperbaric O2 therapy soon.
Oxytocin: We started this after the light bulb moment a few weeks ago about the deficiency of OXytocin in Panhypopituitary Patients. I also found a promising study about the weight loss effects after administration of Oxytocin to obese subjects. As you will know from my other posts, Hana is the first and as far as I know, only panpit child in the world to take Oxytocin for appetite and weight management as well as for improved quality of life, (read about that here). What we have found is that Oxytocin turned around her ability to relate ‘lovingly’ to her sister, as well as reducing some new, post brain tumour removal obsessive compulsive tendencies AND it made her feel so ‘good’ that she has developed a stronger desire to move, particularly swimming, in the afternoons. Hana appears to develop a strong thirst at a higher dose of oxytocin and therefore I’m not sure that we will see benefits of on weight and appetite, this is way I keep pushing for someone, somewhere, to do a trial on this. More on this coming soon too.
That’s all for now, I’ll be writing an update on our homeopathic successes soon as well as filling you in on the Hyperbaric Oxygen therapy. For background posts on Hana’s Brain Tumour and our journey, look under the Brain Tumour category and check out my Facebook Page for daily updates. Thanks for reading!