My Daughter; Post Brain Tumour and Hypothalamic Obesity UPDATE

We are officially 12 weeks post op. These have been the hardest 12 weeks of my entire life and we aren’t out of the woods yet. Things have been so busy that I haven’t had time to write a decent update and there is a lot to say. Sorry for spelling and grammar errors, I’m sure there will be loads. Here is some of our news:

image

Always beautiful

Weight and Hunger

Hana has steadily gained weight every week since her surgery, that’s  8 KG in 12 weeks, (21KG to 29KG) and she is still rising. At only 110cm this is an enormous increase in weight. She finds it hard to bend over, as well as standing up from sitting and gets tired very easily when walking around. Her feet and ankles hurt when she walks. She has also developed painful acid reflux over the last two weeks. Her weight gain is terrifying and makes me feel physically nauseous whenever I think about it, thoughts of it preoccupy much of my waking moments. One very sad moment was last week when she asked me why she needed a bathing suit for a ten year old when she is only six.

From our action plan (see a Raging War against My Daughter’s Obesity) we have managed to start Growth Hormone. We were very lucky to be able to start this at a record 7 weeks post op as we’d originally been told we’d have to wait a year, this would have been a total disaster for Hana. We have problems with Growth Hormone (of course we do, nothing is simple for us!) but I am beginning to get to grips with it – will be posting on these unexpected, problematic side effects very soon.

We haven’t tried T3 supplementation due to our Endocrinologist’s personal experience, his patients developed thyrotoxicity while on it.

We haven’t tried Ritalin or Dexamphetamine yet either. I have gone as far to get the script for Ritalin but have withheld trialling it for two reasons: Firstly Hana has had unexplained tachycardia over the past few weeks. I think it is a reaction to the Growth Hormone and her Thyroid Meds (I’ll explain this in detail in an up and coming post) but we can’t give her this Nervous System stimulant whilst she is tachy. Secondly, I really want to give her a little longer to ‘heal’ and to also try homeopathy before giving her these very strong medications.

As I’ve been saying on Facebook, I’ve enrolled in a very basic homeopathy course (with an intent to study further and even qualify as a Homeopath should I find Homeopathy works for us) so that I can begin to understand the mechanism in which this approach may help Hana. I’ll blog separately on this soon as it deserves a post all to itself as I have already witnessed something VERY interesting.

I have tried one dose of Carallumna Fimbriata (the cactus appetite suppressant), but she detested the taste. I tried one day of taking the supplement and found that it dulled my appetite and I felt like my blood sugars were very stable all day inspite of not eating much. However, the next day, when off the supplement I ate more. I still think it could be very useful for Hana BUT am hesitant to give her something (long term) that has traditionally only be used in the short term (i.e on hunting trips). Considering Hana is so sensitive to food chemcials I am also wary of bombarding her system with it – this is why I prefer homeopathy although as I will soon be blogging, she is also highly sensitive to that!

We have been following the story of the beautiful 12 year Alexis Shapiro in the USA who suffers from Hypothalamic Obesity and has just had bariatric surgery to reduce her stomach size. Two questions my husband and I have is; Has this surgery been done  much/at all on children as young as Hana? We have found one case study where it was carried out on a 2 year old with unexplained obesity, (not Hypothalamic Obesity) he successfully lost weight post op but we want more details on his growth and nutrient status post op. This was done in Saudi Arabia.

And secondly, if the onset of Hypothalamic Obesity is clear in a patient, why couldn’t the surgery be used prophylactically? An important question to ask considering that due to the size of Alexis’s liver a stomach banding couldn’t occur and they had to do a sleeve gastrectomy instead. Where we are, Australia, laparoscopic banding is not conducted on children under the age of 14. We are now going to find out why and we will try to have some serious dialogue with doctors here about this possibility should Hana’s weight gain continue into the 30’sKG.

It’s worth adding here though, that Hana does not eat much more than before her tumour was diagnosed. The only difference now are two snacks a day, a bit of pear in the morning and usually a small bowl of vegetables (such as cabbage or green beans) in the afternoon. Yet the weight gain continues at such a frightening rate. It is baffling and cruel.

Mood

We have been very up and down with mood. One thing is for certain, lazer acuptuncure improves her mood and sense of self. We still go twice a week and once she receives an ‘upload’ into her frontal cortex she is much happier. What negatively affects her mood is fluid retention and hunger. Her ability to cope with hunger is adversely affection by fluid retention and bad mood.

Memory

This has improved dramatically. It is worse with severe hunger and fatigue. I still don’t know how much she will be affected by this in the long run but I do know that because she is so young, she will continue to compensate and ‘heal’. She still hasn’t started school.

Sorry for the abrupt ending, I have two minutes left before the kids wake from their nap. There is a lot more to say, so please keep looking out on my facebook page and keep in touch, all your support helps on an hourly basis at this dark time of our lives xx

For more on our Journey look under “Brain Tumour”

 

 

 

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  4 comments for “My Daughter; Post Brain Tumour and Hypothalamic Obesity UPDATE

  1. Shaimaa
    April 13, 2014 at 10:40 am

    I am sure she will overcome this and be a very happy healthy beautiful lady Xx

  2. Jane
    April 13, 2014 at 3:03 pm

    You’re doing so well. And clearly so is she. It’s early days. You will find a way with the weight issues. Have you tried organic apple cider vinegar? It won’t make her lose weight but it does balance out blood sugars and also it might help with her hunger pangs? I add a teaspoon to a small smoothie before meals and it does something to sugar levels. I don’t know what, I’m not a medic, I just know it’s not toxic and it’s easily administered. I wish you all the luck in the world x

  3. Frogee
    April 13, 2014 at 5:08 pm

    Naomi,
    I have been following Hana’s journey thru your blog and Facebook. Know that I am keeping all of you in my continued prayers. You are doing such a wonderful thing fighting, fighting, fighting. I understand the “dark hour” I have been taking care of my aging mom for a dark hour of several months. Hold on to those moments that keep you going. “We never knew how strong we could be until the only choice we had was to be strong” Love and prayers!

  4. Lindsey Cook
    April 13, 2014 at 7:01 pm

    Hana..so beautiful. Always so painful to read these updates. Always wishing you’re going to say “all fine now”. It’s going to take times and patience. Hope you and Nour are getting enough support. You are always in.my thoughts. Wish I could do something to help xx lindsey

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