Daughter illness close to diagnosis: UPDATE

[barefoot wend]

Frangipani

 

I am really pleased to hear that they have finally discovered what is wrong with your daughter. You must be feeling very mixed emotions - pleased that it is not the tumour but devastated to find out she has anorexia. The team you have sound brilliant and very supportive so you will have lots of help through this.

 

I hope your daughter improves now that you know exactly what it is you're dealing with.

 

Can I just also say that I hope you take some time to look after yourself as you have difficult times ahead where your strength will be needed (make sure you eat well, get as much sleep as you can, etc - I sound like an old mother hen, but you know what I mean.)

 

Take care

 

Barefoot

Edited July 24, 2007 by barefoot wend

[bid]

Really sorry to hear your news, Fran <'>

 

Bidx

[pearl]

<'> Fran <'>

[Flora]

Fran, this must be so worrying for all of you. I'm really glad to hear you have some great professionals working with you and supporting you.

 

Take care of all of you, keep your strength up and you know where we are whenever you need us.

 

Flora <'>

[Clare63]

Fran, my goodness your poor daughter and poor you, thank goodness you have what sounds to be a great team of proffesional to help you. There will no doubt be some difficult times ahead and as ever we are here for you.

You are in my prayers and thoughts.

Clare x x x <'> <'> <'>

[Frangipani]

Frangipani

 

I am really pleased to hear that they have finally discovered what is wrong with your daughter. You must be feeling very mixed emotions - pleased that it is not the tumour but devastated to find out she has anorexia. The team you have sound brilliant and very supportive so you will have lots of help through this.

 

I hope your daughter improves now that you know exactly what it is you're dealing with.

 

Can I just also say that I hope you take some time to look after yourself as you have difficult times ahead where your strength will be needed (make sure you eat well, get as much sleep as you can, etc - I sound like an old mother hen, but you know what I mean.)

 

Take care

 

Barefoot

 

Thanks Barefoot Wend you can sound like an old mother hen anytime you like Thanks Bid, Clare, Flora and Pearl <'>

 

It is a relief to know what is wrong, but boy its been emotionally draining and challenging.

 

A friend of mine said gosh you know if she isnt careful she could end up in a wheel chair. I thought oh thanks for that!! Just what I needed to know.

 

But then I had a couple more days of food refusal and again refusing any dairy and all of a sudden I had had enough and said you know .... if you dont start to get yourself well you could be looking at your health really deteriorating and very likely end up needing a wheel chair, on that note my daughter said, that banana smoothy is sounding really good. The next day she wanted breakfast and I suggested that I thought it was about time she started to prepare her own breakfast and food and start taking an interest in cooking and food preparation as we have some excellent cookbooks that I purchased especially for her to learn to cook. So she cooked herself breakfast and made me a cup of tea and grilled cheese and tomato on toast. that was a first. Then she said can I make dinner, following a recipe she made chicken skewers with rice with a beautiful satay sauce homemade it was devine. First meal she has cooked in ages.

 

I think finally she taking an active choice in her food decisions, instead of opting for junk, she is trying to make healthy choices. We are health freaks anyway, its not like there is junk in this place.

 

Being told her bone density in her spine is is the lowest 15% and that she is loosing bone and not making bone has certainly sent shock waves through us. Being told she would go into a hospital for annorexics was certainly a wake up call. As I said to her, all she needs is to get really sick, and she is at risk.

 

Who could believe this .... its like a dream, you just want to wake up and think, this isnt happening. Its hard not reading into it more..... like.... is there more they are not telling me, but, thats just probably being paranoid.

 

So I will take you advice and take it easy for a while. I cant imagine what my little girl is going through, its not like she deliberately set out to be this unhealthy, and it totally makes me feel like a bad parent which I am not.

 

Positive vibes here on in thanks again, for your kind words and caring.

 

Love

Fxx

[pearl]

<'> Fran <'> hang on in there, your latest post sounds quite encouraging xx

[Suze]

<'> Hi fran, I,ve been on holiday for a week, so have only just read your update, just wanted to send you both the biggest hugs <'> ,hope those little steps in the right direction build up into big strides soon, well done to your daughter for begining her journey back to full health ............go girl!! <'>

[Alyth_mum]

Hi I've just read this thread - you have both been put through the mill in the last 4 weeks...

 

Hope you are now going forwards.... have they given you any ideas on how to increase her bone density?

 

I know that regular weight bearing exercise (even something simple like walking to pick up newspaper/milk) can decrease the chance of Osteoporosis in later life because it decreases the rate of bone loss .

However don't let her over do it otherwise you end up causing a negative affect.

Good Luck.

 

Louise

[Frangipani]

<'> Fran <'> hang on in there, your latest post sounds quite encouraging xx

 

Thanks Pearl <'> feels like a few steps forward and a few steps back.

 

<'> Hi fran, I,ve been on holiday for a week, so have only just read your update, just wanted to send you both the biggest hugs <'> ,hope those little steps in the right direction build up into big strides soon, well done to your daughter for begining her journey back to full health ............go girl!! <'>

 

Thanks Suze, she has alot of positive people around her, which is good but I had to ring the church pastor as my daughter is in a lot of leadership roles and they have all these plans for my daughter so they really need to know what is going on, so they can not overload her and make sure she is doing things within her capacity at the moment. They had her rostered on to do kiddies church but I am afraid of them rough and tumbling, the kids love her so much they run up and hug her and climb all over her. Also, at youth group, they play games and get a bit carried away, I am so paranoid of her breaking something. You dont realise how easily she could do this until you look at the bone density tests.

 

Suze, I hope you had a lovely holiday, a well deserved rest and lots of fun hardest part is coming back home, holidays go so quickly dont they. Thats just what we need at the moment a nice holiday. I remember reading about your marathon, I thought "go girl" I need a challenge like that. Definitely!!! Sounds like fun.

 

Hi I've just read this thread - you have both been put through the mill in the last 4 weeks...

 

Hope you are now going forwards.... have they given you any ideas on how to increase her bone density?

 

I know that regular weight bearing exercise (even something simple like walking to pick up newspaper/milk) can decrease the chance of Osteoporosis in later life because it decreases the rate of bone loss .

However don't let her over do it otherwise you end up causing a negative affect.

Good Luck.

 

Louise

 

Hi Louise <'> Just noticed you are new here, welcome to the forum, they are a lovely bunch. You have come to the right place.

Thanks for that advice I will ask them about exercise, I have to be careful not to wrap her up in cotton wool. The endocrinologist put her on a mega course of Vitamin D which apparently helps with the absorption of Calcium. We have an appointment with a Dietician this Thursday who is in the same rooms as the Endocrinologist and the Paediatrician was going to have a lengthy chat with her. I imagine she will put her on some type of plan or supplements, I am surprised the Endocrinologist didnt put her on calcium, but I forgot to mention how she refuses to eat dairy.

 

I think this has given her a big scare, but I can see its going to take a lot of patience to get her to change her habits. She is worse than a two year old when it comes to food.

 

I believe the tumor has done something to her tastebuds, this is why she loves and hates food. All I can say is I hope the dietician can bring about some changes. I have done some serious groundwork for the past two years to only lead to further frustration. Its like taking a dog to the slaughter when it comes to food sometimes. She just doesnt get hungry at times, or everything tastes bad. This is where I blame her taste buds. The Paediatrician is blaming stress for a lot of it. Perhaps I could put her into Yoga when she gets stronger, this may teach her to relax.

 

I dont understand how hard it is for parents for teens with severe annorexia. I am still in the dark about the tumor and its role in this, but we just have to focus on results now, and not fear about what might and might not happen. IYKWIM

 

Thanks again, <'> it helps me process it all by being able to talk about it. Thanks for being patient with me .

 

Each day is a new day. Another step forward I hope. I will just stop thinking, and I will be fine. Will channel some of this energy into my hobbies. Definitely.

 

Keep well.

 

Love

Frangipani xx

Edited July 30, 2007 by Frangipani

[Clare63]

Fran,

I am pleased to hear how positive things are and that each new day is a step forward. I always say its good to talk and there is always so many lovely people on this forum to listen. Its strange but I feel I know people so well, you can't help but get involved and its reassuring to hear how people are getting along with the difficulties they are experiencing.

You daughter sounds to be in very safe hands and has such a lovely caring Mum, I am sure things will improve very quickly.

<'> <'> <'>

Clare x x x

[Frangipani]

Fran,

I am pleased to hear how positive things are and that each new day is a step forward. I always say its good to talk and there is always so many lovely people on this forum to listen. Its strange but I feel I know people so well, you can't help but get involved and its reassuring to hear how people are getting along with the difficulties they are experiencing.

You daughter sounds to be in very safe hands and has such a lovely caring Mum, I am sure things will improve very quickly.

<'> <'> <'>

Clare x x x

 

I know what you mean about this place. They certainly have a place in my heart. We have a bond that is special. I know I have had my share of ups and downs and the odd PM to say hang in there keep going, makes you realise they really care about you. Sometimes you feel they are the only people in the whole world that is listening. Have so much gratitude for this place and the people I have come to know as friends.

 

Fxx

[Frangipani]

Hi,

 

My daughter and I had our first session with the Dietician and it went really well, she said I was doing everything right but recommended as well as three meals a day my daugher have at least 3 dairy smoothies and fruit in between meals and add a scoop of powdered milk or hospital supplement powder vanilla to boost the calcium levels. In between meals so she is actually having 6 meals a day.

 

We also have her enrolled in Online Distance Education for HSC subjects, the teacher rang this morning and introduced herself.

 

The dietician helped a great deal in letting my daughter see she needs to eat for strength. She agree's the annorexia and bone density test reading so low was not caused by my daughter refusing to eat because of worry of weight gain, but from worry and stress about having a brain tumour, and the recent split with my partner and his daughter also having a brain tumour.

 

Its all little steps at the moment. My heart goes out to other parents with kids affected by illness and mental illness, as you are literally on your own working through this, and the worry is like a vacuum if you are not getting the right help and advice. Finally, we are getting the right advice but it took 3 years to get it.

 

Thanks for being there for me through these rough patches. I believe I have come out of it a better person. and I know at the end of the day, you lovely people here deserve a big big thank you.

 

<'>

 

love

Frang <'>

Edited August 10, 2007 by Frangipani

[annie]

Sending you and your dd some <'> <'>

 

Annie

xx

[Frangipani]

Sending you and your dd some <'> <'>

 

Annie

xx

 

 

Thank you Annie

 

Here are some hugs for you too <'> <'> <'>

 

Love

Frangipani xx

[smiley]

<'> Hey Frag - you are a fantastic mum, you know that? <'>

 

I've been reading your updates and have been sending stacks of positive vibes your way <'>

 

I've had an ..............erm............. eventful life, lol! But, i think the hardest thing to get through was bulimia, in my teens and early twenties. Having someone around to support you (and understand you) whilst you're trying to get yourself better makes so much difference. Your daugters a lucky girl

 

<'>

[Frangipani]

<'> Hey Frag - you are a fantastic mum, you know that? <'>

 

I've been reading your updates and have been sending stacks of positive vibes your way <'>

 

I've had an ..............erm............. eventful life, lol! But, i think the hardest thing to get through was bulimia, in my teens and early twenties. Having someone around to support you (and understand you) whilst you're trying to get yourself better makes so much difference. Your daugters a lucky girl

 

<'>

 

Thank you Smiley <'> You are a fantastic Mum too, I am sending you lots of positive vibes too Its easy for parents to beat themselves up when we get a diagnosis like this, so your comments are greatly received and appreciated. Thanks Smiley, I see you know where we are at with your Bulimia. Its a matter of breaking the cycle and loving supportive friends or family. I talked at length with my Pastor she wants me to step out of the fear mode, she said 'fear is the devil 'and asked me do I trust ... that was a good question to ask me; it is like something in my mind went snap, and released me from the fear factor. So thank you for your positive vibes; I can feel them working. I am getting out and walking everyday, that's what the dietician recommended my daughter do too.

 

All steps forward now

 

Love Frang xx <'>