Every night and every morning I ask Hana to step on the scales, I hold my breath, knowing the numbers are only going to be higher than the day before. Hana has gained 4 kgs in 7 weeks, this is a 35% increase in body weight. This has occurred in spite of a healthy diet and normalised steroid dose. If you have been following our journey you will already know that since the removal of her brain tumour, my daughter has become at high risk of becoming morbidly obese over the next six months (see Why my daughter is at at risk of developing obesity). As I see it, we have two aspects we need to address to prevent this from occurring. Firstly, we need to try and heal her brain to minimise the severity of this condition and secondly, we need to – and have already to- start implementing treatment modalities that will reduce the weight gain.
BUT: Diet and lifestyle intervention don’t work in preventing Hypothalamic Obesity. Medications also typcially don’t work very well, they may address one aspect of Hypothalamic Obesity, but there is no magic pill that addresses all the casual factors. All have side effects. We left hospital aware of the risk of Hypothalamic Obesity thanks to our own extensive research. Advice we were given with regards to the Hyperphagia aspect (one small aspect) of it, was ‘Manage it.’
No other suggestions were given although one booklet did say to lock the kitchen cupboards and fridge, not a piece of advice I found particularly wholesome or inspiring. I knew it would be up to me and my husband to find a solution that suited us. So the moment I took my daughter home from hospital I got online and began to trawl through hundreds of research papers on Pubmed as well as scanning the net for alternative and complementary treatment modalities. I was being realistic, I know that she can’t ‘regrow’ her pituitary stalk, she will always have panhypopituitarism, (more on her permanent health conditions here) but I believed that I could, somehow, find a cure, a way to heal – at least to some extent – her hyperphagia and metabolic issues.
It is well established that the brain can heal itself. It is also known that children heal better and faster than adults. In fact, it is taken for granted that the corpus callosum, which was severed during her surgery, will heal. So why can’t her Hypothalamus heal? I asked myself. Stem cell Hypothalamic Replacement has been trialled in rats successfully but human trials are a long way off, we need to take action right now.
The research states: 75% of children post Craniopharyngioma resection become morbidly obese in the first 6 months post op. What causes the obesity is not just increased hunger (hyperphagia) but also a completely screwed up metabolism. My husband and I sat down and plotted how we could tackle each physiological manifestation that contributes to this reduced metabolism and hyperphagia.
Here is what we came up with:
1. GET Growth Hormone
Most children have to wait 12 months before they can apply for growth hormone. GH is crucial for muscle over fat desposition, (which in turn helps energy levels and increases energy output which in turn increases metabolic rate). Every week that we delay another 500g-1kg of weight is gained. The moment she gets her GH injections, we hope the weight gain (at least in terms of fat over muscle deposition) will be reduced as she starts to grow again.
UPDATE, SUCCESS! Thanks to us being very pushy parents we managed to get Hana a growth hormone study at the a record 6 week post op mark!! Thanks to a little more pushing and a VERY helpful endocrinologist her results were available within 24 hours (not the usual 4 wk wait!). Our application for GH has officially now been submitted and we have asked for a private script which we will fund ourselves to cover us for injections until the government approves our application! This is literally hot off the press and I’ll be posting Facebook updates on this tomorrow.
2. Lazer Acupuncture
I was keen to try acupuncture after reading a group of articles in Pubmed about weight loss after lazer acupuncture in rats with induced hypothalamic obesity. I had a hunch it may help Hana’s brain from my own limited understanding of neurology; I guessed that Hana’s brain, after surgical insult, would have reduced neural firing due to damaged circuitry (particularly in the hypothalamic area). I hoped that the acupuncture would help to re-stimulate this neural firing, and by encouraging neural firing, her neural circuitry would become re-established.
We are extremely fortunate to have found an Australian pioneer in an area of acupuncture that is currently only practised in Europe. Dr Im Quah Smith, a medical doctor in Roseville (her website is here), has just completed her ph.d in Lazer Acupuncture (no needles) and she is using Nogier French Method to help heal Hana’s brain. The process includes listening to Autonomic Clues from the radial pulse on exactly how much lazer stimulation to give on or ‘upload’ to areas on Hana’s ears which then correspond to the brain. Dr Im is always spot on in her analysis of Hana from reading these clues (without me saying anything – it really is very interesting). We have been going twice a week for four weeks. I went with an open mind, hopeful after reading about the success with rats! I can honestly say that this form of Acupuncture has been the most crucial aspect of her overall healing and sense of wellbeing over the past four weeks. Two days after her first session where Dr Im stimulated Hana’s frontal brain (this is where the sense of self is embedded) Hana suddenly ‘returned.’ This was 3 weeks after her operation, during those three weeks Hana had been ‘vacant’, empty, just not there. If you looked in her eyes, you wouldn’t find her, I had wondered whether or not she’d ever be my Hana again! But within 48 hours after that first session she began to talk and sound like Hana again. It was beautiful. Another few sessions later the fits of rage began to decrease and her short term memory began to improve very rapidly. Of course, I can’t ‘prove’ to you that it is the acupuncture that is helping her the most, many would say that she would be improving anyway. This is true, however, her progress has been marked since the acupuncture started, so much so that even her neurosurgeon was surprised at how well she is doing. I really do believe this is true healing.
3. Diet and Nutritional Supplements
Some doctors tell their patients to take things OUT of their diet to combat obesity, so I decided that I would do the opposite and put more (goodness) in her diet! Fat in particular was high on my list of things to cram in. Yeah, not the processed food kind of fat, but good fats, brain healing fats! Pretty crucial considering the brain is one large, fatty organ. How can it heal without fat? Interestingly one of the medications prescribed to adults with hypothalamic obesity are drugs that stop them from absorbing fat in their food. I really struggle with this, although fast food fats are terrible for overall health as well as being inflammatory, how can a brain heal without ‘good fats?’ Well it can’t, I suppose. What I also needed to do, was rectify Hana’s iron deficiency and anaemia from the blood loss in hospital. As I’ve written else where (see Iron Deficiency in Kids; Is it serious?), adequate iron levels are crucial for helping myelin producing cells in the brain (these produce the fatty sheath for ultra fast neural processing). So I put Hana on a iron supplement right away. She is also on vitamin supplements vital for neural processing including B vitamins, zinc, magnesium and a good probiotic for her damaged gut lining (thanks to the multiple courses of antibiotics that she’s needed). The biggest issue I have is getting omega 3 fish oils into her. They taste disgusting and she reacts to the flavoured kiddy ones. My mission continues here, I will find a solution!
There is some research that suggests a ketogenic diet is ‘neuroproctective’ which may help reduce brain inflammation and facilitate neuro-generation; healing. However, due to our food intolerances and diet restrictions I can’t try this option yet. If she continues to become obese then I may have to try this also as an attempt to reduce her insulin output (hyperinsulinemia).
4. Increase Metabolism
As I’ve discussed here, Hypothalamic Obesity is characterised by ‘poor sympathetic tone and increased parasympathetic tone’ this means there is a decrease in adrenalin release, basically a decreased ‘get up and go’. One drug that has been tried in kids with Hypothalamic Obesity is Ritalin (the amphetamine drug used in ADHD kids). Now the use of this drug in ADHD kids is sometimes seen as controversial but I’m very glad that it is a drug that is well used! This means that doctors are familiar with using it and would be good at managing us, if we need to go down that track. As a drug it would replace EXACTLY what my daughters body/brain is missing: Adrenergic Nervous System stimulation! The negative side affects of the drug (reduced appetite and weight loss) are a total bonus, positives for us! We will continue to carefully moniter her energy levels and wait until the 10-12 week post op mark before we try this drug as a last resort in the final three months of massive predicted weight gain.
5. Appetite Control
I (try to) manage Hana’s constant hunger with healthy snacks like lettuce and frozen pear. However, she is very disturbed by her hunger and has asked me how she will cope in school being so hungry. We want to improve her quality of life by removing that hunger so that she can focus on activities like children her age. I found a selection of promising studies on an Indian Cactus Supplement called Caralluma Fimbrata on the net. In India it was been used for hundreds of years as a ‘fasting’ food. What is exciting about this vegetable is that it is thought to act centrally on the Hypothalamus itself, interrupting hunger pangs from the stomach. BUT whether or not it will affect a potentially ‘damaged’ hypothalamus like Hana’s is another question. I was also very encouraged to find that a mother whose daughter had intractable Hyperphagia due to Prader Willi syndrome successfully controlled her appetite with this supplement. She was so excited by this that she is now completing a Ph.d on the topic. We will put this up our sleeve for further down the line.
Latest; Homeopathy: I’ve been to see a fantastic naturopath this morning who has had excellent results from homeopathy. I am very keen to try homeopathy to help manage Hana’s hyperphagia and so under her instruction we will begin this treatment this week. I’ll keep you posted on how that goes. This will be fascinating…
The War Continues to Rage…
A day doesn’t go by that I don’t scan the net for something that I may have missed in this war against Hana’s obesity. I am hopeful that we can at least minimise her weight gain by using this action plan…And all you need is a little hope to get you out of bed in the morning. I’ll keep you all posted, thanks for reading. xx
For more on our journey have a look under the Brain Tumour category