This blog post is entirely from the horses mouth (Bev) I am literally touch typing everything she says 😉
Well what can I say, a waste of an NHS appointment slot!
No offence to the lady I saw, and it is no offence to her… Alder Hey had said because of her weight (gain) we will sort out a meeting with a dietitian and we ended up at this appointment at Blackpool Vic.
The lady said “Angel has had these symptoms for a while” I said to her ‘well have you heard about hypothalamic syndrome?” She had ‘heard of it’ but that was it – so I kind of like said “All I’ve been told is Angel has this syndrome, I have had no literature or guidelines or anything.. which has resulted in me researching it all myself, and even joining a group in Australia, to find people on Angel’s wavelength”
So she said to me “You sound like you know what you’re talking about”
I told her “I’ve put her on a low carb diet, after everything I have read online and discussed with the group – Angel doesn’t burn off sugar very well, if at all, so low carb is what I opted for”
Her reply was “You sound like you know what you’re talking about, I will get in touch with the adult endocronology team and if anyone there has more information about Hypothalamic syndrome we will let you know… if you don’t hear anything then it means they don’t”
Well – talk about having a rare brain tumour, she also a rare syndrome.
I did actually say to pediatric dietitian “Have you ever actually met anyone who has wrong with them what Angel has”
No surprise, she said “no”.
I feel like Angel is the only child in the flyde coast that is suffering with this??
[ READERS: If anyone reading this has experience with or knows or anyone suffering from hypothalamic sydrome – multiple hormone deficient please get in touch we would love to hear from you]
The next day, Tuesday 23rd June: Endocrinologist Clinic Review.
Angel saw Doctor Didi and he weighed her. At her highest Angel was 8 stone 8lbs. This is the first time since we came back from America that she has lost weight at an appointment and not gained – and she has lost 2lbs. This was only doing a low carb diet for two weeks. So she was now 8 stone 6lbs.
Doctor Didi was very impressed, and we told him about her low carb diet. Her medications have been upped, she is now on:
- 6am in the morning – hydrocortizone 5m | thyroxine 50mg
- 7am – 500mg of metformin
- 11am – 5mg of hydrocortizone
- 3:30pm – 5mg of hydrocortizone
- 5:00pm – 500mg metformin
- 8pm – Growth hormone (injection)
- 8pm 4mg melotonin
That’s it! We are aboslutley chuffed to bits for the first time she is losing weight and not gaining. She’s been told with the syndrome she has, it doesn’t matter if you diet, eat healthy or eat crap, you will still put weight on, the hypothalamus is something you can’t control.