A Distressing Update on my Daughter’s Hypothalamic Obesity after her Brain Tumour

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Blood test time, we’d both been awake since 2a.m. Yes, the bags under my eyes are big enough to pack an for international flight.

Things have been hard recently…we have had serious issues finding the right ‘care’ for Hana – something I want to write about in the future when ‘things’ have settled. For now I wanted to update you on Hana’s obesity and where we are at with our own investigations and interventions.

Hana Now

My little girl has gained nearly 20KG in 9 months. She is only 117cm tall.

She finds it hard to stand up  for more than a few minutes and she can’t even toddle around the house without severe knee and ankle pain now. The wheelchair is a fixture in our new lives. Another morbidity that has developed over the last few months is Sleep Apnea. A few nights ago I had to listen to Hana gasping for breath every ten minutes in her sleep. We are on a waiting list for a sleep study and I’m guessing may need to get her a C-PAP machine in the future. Secondly her most recent bloods have shown the onset of Insulin Resistance and signs of an early Fatty Liver.

What we were dreading and fighting against from the moment she woke up from her surgery has happened and we are dealing with the very frightening reality of severe Hypothalamic Obesity that is showing no signs of abating or slowing down. I’m trying to do two things with my intervention, firstly I want to decrease Hana’s hyperphagia – her constant, demonic hunger consumes most of her waking thoughts, I can’t bear to see her suffer from such severe hunger, her life revolves around when she can eat. Secondly, I am also trying to find something that will stop the weight gain.

Here’s what we’ve been trying recently:

The Metformin Disaster

Some survivors have had great success from the Diabetic Drug Metformin – one even says that it reversed Hypothalamic Obesity in their child very early on. Unfortunatly we are not one of these lucky ones. Hana had a paradoxical reaction to Metformin, it further increased her constant hunger (can you imagine!!) and made her hungry at times we’d found relief (post Homeopathic Hypothalamus) , it dramatically impaired her concentration too, she was like a zombie for a week. Finally, at the end of that hellish week, we tried in vain to increase the dose to see if that helped  – no, she developed sudden, extreme thirst – her mouth was like sandpaper! She gained 2 KG in a couple of days (fluid  initially- but that weight never came off) and her fingers swelled up like tight sausages. We stopped the drug as soon as we observed these effects of course. There is a chance we can try Metformin in the future – once Hana’s Insulin Resistance has further developed (once more damage to her body has occurred).

Natural Desiccated Thyroid

Some have lost weight on this, Hana however hasn’t but has experienced improved quality of life see (Thyroid Medication, why I chose the Natural over the Pharma) – Hana has always appeared to convert t4 to t3 very well with no apparent issues with reverse t3 so I’m not surprised we haven’t had weight loss yet, although I’m currently increasing her dose. The increased dose will help raise her metabolic rate, but unfortunately increased BMR increases the appetite. This small increase has made Hana completely famished over the past week – so much so she’ll even say “I’m full…but I’m STILL thinking of food.” As I said on my Facebook page earlier this week; “Listening to my daughter cry because dinner is over…sometimes I wonder how the World can still turn.” 

A piece of me shrivels up and dies inside every time I hear her complain of her hunger.

Homeopathy: Hypothalamus 9c and RNA

The hypothalamus 6c had a great effect in reducing Hana’s afternoon appetite (see this post for details on that) however, a few months ago I made a mistake in trying to improve this by giving Hana hypothalamus in a 200c dose, this appeared to have the opposite effect and INCREASED her appetite and appeared to disrupt a three week period of weight stabilisation. Gutted…but I had to try it. Under the guidance of our great homeopath, Hana is now on daily Hypothalamus 9c and has just started RNA 6c. Afternoon appetites improved again without no weight stabilisation. Overall I’d say that  up until we had to increase her Thyroid meds last week the homeopathy we’re using had made life ‘liveable’ but now her hunger is back to being unbearable. I’m hoping my homeopath will have some more ideas this week when we meet to discuss our next actions.

Chromium

I started giving Hana a small dose of Chromium every other day, I was very careful as Chromium is a trace mineral and therefore toxicity is an issue with too much, so I kept it within the RDA. I was very pleased with a clear dampening of her appetite which started within 24 hours of the first dose and we continued for two weeks. However  if you’ve been following my Facebook page, you’ll know she’s had headaches and dizziness recently,  so I stopped giving it. Who knows, could it have been some sort of reaction?? Or maybe she has issues excreting it? Maybe it’s nothing to do with the Chromium! But we need to tread so carefully – the only way to find out is to try again in the future at some point.

Oxytocin

This has transformed Hana’s quality of life (and ours too) but not in relation to food (THIS is what happened when Hana started Oxytocin). She can only tolerate a low dose of this right now, we are trying to slowly increase this but getting to the higher levels used in the study for Obesity is a long way off. Why does Hana react with extreme thirst to high levels of Oxytocin? I don’t know – this is why it needs to be studied. To help me get the word out there why not share my PLEA? Either way, Oxytocin is integral to Hana’s overall wellbeing and we couldn’t imagine going back to life without it. I’ll be posting an update separately on Oxytocin soon.

Caralluma Fimbriata

We gave this a good go – for the first week I noticed only a slight effect on appetite but a good effect on reducing Hana’s constant extreme thirst (this is an uncomfortable issue for many Cranio survivors). However – this ended up being a negative not a positive as as two weeks later she ended up dehydrated with a slightly elevated sodium – the thirst dampening effect was too strong and appetite effect too little combined with the fact she stacked on 2 KG over week three of trying this herb. It also increased her gut motility to a level of bowel frequency that was simply irritating and inconvenient and I was beginning to worry about nutrient absorption etc etc. So Caralluma Fimbriata is officially dumped. Bye bye…

What Next?

There are some other herbal medications that we could try; Green Bean Coffee extract and various others that sit on the shelves in the Health Food Store. There is also a chance we could try a daily injection of a drug called Octreotide. This can only be used for a few months but has shown good results for some sufferers of HyOb for that short period of time, and a few months of decreased appetite and weight loss would be a godsend for little Hana. My biggest worry of course, is that she’d react to it! She is so super drug sensitive I’m not confident she would be without some nasty side effect – probably thirst and water retention. We are also being forced to revisit the idea of trying Adrenergics – Sympathetic Nervous System stimulaters – such as Ritalin and Dexamphetamine – her quality of life is so impeded by her weight and appetite we are getting desperate.

Meanwhile my husband and I are trying to start meaningful conversations about Bariatric Surgery – Lap Banding. Lap Banding is thought not only to improve satiety in patients with Hana’s condition but it also interrupts some metabolic processes and facilities weight loss that way too. Thoughts on how this occurs is through some interruption to the Vagal Nerve – some have called this a “Functional Vagotomy”. In Cranio survivors Vagal activity is considered overactive or ‘disinhibited’ whereas Sympathetic Neural Signalling (fight/flight) is reduced – hence the prescriptions and use of SNS stimulators such as Dexamphetamine to compensate for this. Actually, there have been reports of sufferers of Hypothalamic Obesity benefiting from a Vagotomy where the nerve is surgically cut. This sounds SO scary but naturally something we would be pushed to consider if research in this area develops and continues to look promising.

Questions we have about the Lap Banding: Would anyone consider conducting it on someone so young? The youngest patient worldwide that I have found was two years old but he does not have a long term follow up.  Of course the concept of lap banding our little girl is terrifying – but so is the thought of continuing to be a bystander to her suffering and multiplying morbidities.

Thomas Inge, the surgeon who operated on  Alexis Shapiro (little girl with the same tumour and health conditions as Hana) makes an excellent point about Bariatric Surgery on youngsters by saying:

“Given what is known about the natural history of HyOb, its resistance to diet and lifestyle modification, and the extreme and progressive weight gain involved, some may consider bariatric surgery appropriate at ages currently considered too young in patients with exogenous obesity. However, in general, the younger the patient the more compelling and serious the comorbidities must be to justify surgical intervention.” (Ref here). He also states that earlier intervention in this population could well lead to an improved outcome post operatively rather than waiting for morbidities to progress.

When will Hana’s weight gain subside? NO ONE KNOWS. Another question we have is that, a 7 year follow up of Lap Banding on  four survivors of Craniopharyngioma with Hypothalamic Obesity showed weight loss for two years but all survivors had regained their previous weight by the end of the study period. Why is this? Is there anyway we can override this potential consequence by intermittently lap banding her over a period of years – either for the rest of her life or until some brain healing takes place?

We are in the process of finding the best specialist for Hana right now and hope that we can  find someone with whom we can have these very conversations and together devise a Treatment Plan for our little girl. Hopefully we’ll find ‘that someone’ very soon, for Hana’s sake.

That’s where we are. Thanks for following, more posts on our journey with Hana’s Brain Tumour and her survival can be found here. And as you know, I usually update my Facebook Page daily. 

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  2 comments for “A Distressing Update on my Daughter’s Hypothalamic Obesity after her Brain Tumour

  1. Jane Thorne
    September 15, 2014 at 11:44 am

    ❤ xXx

  2. Helena Sindelar
    October 11, 2014 at 11:22 pm

    Hi Naomi..Just read about this in the paper-what an absolute shock. I haven’t read all your blog and won’t presume you haven’t exhausted all avenues but The Zone Diet (Barry Sears) has some interesting things to say about certain foods and insulin production-namely avoiding the carbs that cause insulin to rocket such as rice, bread, some cereals and certain veggies like peas, carrots, pumpkin, corn and potato. An interesting read despite it being on the hard-sell American side. It suggests a little lean protein with every meal but doesn’t overdo the carb/protein thingy but suggests a balanced ratio. Bread is one of the culprits as one slice can be upwards of 100 calories due to the high carb content but the same weight and calories in broccoli would equal 3 cups which would create more hunger alleviating bulk. Of course, a child and huge amounts of broccoli doesn’t always compute. Of course there are other carbs available to do the same trick. The diet’s guidelines have had a great deal of success dealing with and avoiding diabetes. I also want to add that there would be a great deal of relief for her symptoms that Hannah would be experiencing when she eats, certainly to alleviate her severe hunger pangs, which would put the idea of and reliance upon food also in the emotional category as well as the physiological which would be very difficult for a young child to differentiate between. Food creates relief which in turn increases her desire for it. Not suggesting that is the complete case with Hannah as I think you would be much more of an expert it hypothalamic disorders than I would but it’s very easy to enter into a battle scenario with food which can’t help but turn eating into a heaven/hell situation with the idea of food being celebrated and dreaded at every turn. This can’t help but nudge a need for food into the realm of emotional comfort.
    I can’t imagine what you’re going through but Don and I are thinking of you.

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