Daughter illness close to diagnosis: UPDATE

[Frangipani]

I never realised a trip to the dentist would have my heart in a panic.

 

My daughter was diagnosed with this recently PCOS and bone density test for under developed body like a 10 year old yet she is 17. She just had pain in her wisdom teeth and the dentist saw the scans and said this PCOS bone density tests we are having and blood tests from the endocrinologist are all connected to brain tumor she had when she was nine. We are now in panic mode as the dentist concluded Glandular fever and asked had she been poorly and tired all the time and we said yes and told her all the above. So its a bit of a storm in a tea cup at the moment. Having a brother on the spectrum I am wondering if all this is affecting her biological system. As I heard PCOS and AS are connected via another topic. Will have to total conglomerate of tests back by the 18th, but now the dentist has me in panic mode, worrying about the tumor more than the PCOS. I just asked the Paediatrician to call the dentist, it has now become urgent.

 

Remaining positive, but my mind is working over time. Its hard not to jump to all sorts of conclusions.

 

F

Edited July 11, 2007 by Frangipani

[wishingwell]

Sending you lots of these.

<'> <'> <'><'>

[Frangipani]

Hi The Paediatrician just phoned thinking I was the dentist, then discussed it all he said he is going to organise an MRI of her brain. asap

 

The endocrinologist is on holidays even though she has all the tests back. But the secretary gave me her mobile phone number when I filled her in, certainly getting some action.

 

Will be in touch, when I know more.

 

Take care

 

F xx

[Frangipani]

wow

 

Booked in tomorrow morning at 10.15am all happening now.

 

no time to be anxious.

 

 

Then will be a waiting game for the results.

 

Fxx

[bid]

I heard PCOS and AS are connected via another topic.

 

Fran, please don't panic!!

 

I was only asking if there might be a link because of Simon Baron-Cohen's theory about the possible increased exposure in utero of ASC girls to male hormones.

 

I wouldn't worry about PCOS too much anyway (I'm assuming we're talking about the same thing: Polycystic Ovarian Syndrome?? ). I have had it all my adult life, and although it has caused me problems, I have still had 4 children

 

I would try and wait for all the results to come back and be interpreted by the specialist before you try and work out what may be wrong with your DD.

 

Difficult times, I know, but you have done everything you can by organising the appropriate medical help for your DD <'> <'>

 

Bidx

[Clare63]

<'> <'> <'> <'> <'>

Fran, thinking of you.

Clare x

[mossgrove]

Thinking of you.

 

Bid has a good point.

 

I have caused myself enless hours of unneccessary stress in the past trying to work out in advance what a specialist is going to say. It is best to try not to do it, but I know that is easier said than done.

 

Simon

[bikergal]

Thinking of you <'> <'> <'>

[barefoot wend]

Fran

 

Hope all goes well and that you have a clearer picture of what's going on by the end of the day.

 

Best wishes

 

Barefoot

[Frangipani]

Thank you <'> <'> <'> <'>

 

The Paediatrician said he was annoyed with the dentist for telling me so much. He said she really had no right to tell you all that especially in front of my daughter, it seemed to go over my daughters head as she walked out of the room for a moment, but the dentist saw the panic in my eyes when she told me, then she looked back at me with an equally worried look as if to say, you should be worried, then said I want you to come back on Thursday to have our head Dental surgeon to give a second opinion to my findings just to be sure. Then she said after that I want to go and discuss all this with your GP.

 

How amazing is our Paediatrician, he has organised the lot. Told my daughter to be positive and not to read anything on the internet as the Paediatrician advised as like you all say, its so easy to jump to conclusions. Thanks Bid, Mossgrove and Barefoot.

 

We have to travel to the otherside of the city to get an MRI so soon.

 

Thanks again for your posts I will do what you say, not panic.

 

I have had so many things going through my mind today, as I was silly and looked up stuff on PCOS and it was saying, possibility of not having children, diabetes. Then when the dentist gave me that look, I keep picturing her face and what she said and started thinking cancer. thats when I realised. STOP!!!!!

 

Daughter very teary and emotional, I really stuffed up, I sent a text message to my mum saying the doctor has booked her for an MRI on her brain asap, and guess who I accidentally sent it to, dahhhh, my daughter, she knocked on my door in tears and said mum, whats going on. We had a good talk and cuddle and she is calm, my mum said 'Be Positive' its working.

 

Sorry, babble over.

 

I'm cool, okay. Will press the delete key now.

 

Sorry, just working myself up to being strong and positive, truly I am.....!!!!

 

Sigh.........................!!!!!!

 

Thanks again, you must be sick of all my posts by now.

 

I better send you some money for a drink at the Southern Meet up just to say thanks.

 

 

Love

Fxx <'> <'>

[Frangipani]

OMG my Paediatrician just called me at home again, he wanted to confirm I had all the details for the MRI and said he wants me to call him tomorrow afternoon so he can speak with me, about the MRI.

 

He went over what the Dentist said and I assured him it went over my daughters head, but she certainly put the fear of God in me. I read her face loud and clear. He said he is still annoyed.

 

I said everything we have discussed over the past 3 months I then started filling in the dots and started to truly worry that all this is the tumor coming back or something.

 

Also how she said, I want to discuss my findings with the Head Dental Surgeon before you then go and tell your doctor.

 

Just relaying the message

 

Thanks for listening. <'> <'> <'> You're and awesome lot.

 

Lets be positive. <'>

 

Going to get an early night as we have an early departure.

 

lots of positive vibes <'>

 

F xx

[Kathryn]

Hi Frangipani,

 

<'> <'> <'> <'>

 

Thinking of you and your daughter tomorrow. You're several hours ahead of us - so hope you're managing to get some rest now.

 

K x

[brooke]

Hi fran

<'> <'> <'> hope all goes well

[aro]

Thinking of you and hoping for a good result tomorrow

 

A x

[mum22boys]

Thinking of you <'>

 

Hope it all goes ok

 

mum22boys

[witsend]

Thinking of you <'> hang in there <'> keep us posted.

Luv Witsend.

[elun1]

<'> Thinking of you

Elun xx

[peppa]

Thinking of you both

xxx

[pearl]

<'> fran <'> tough times at the mo for you. You are in my thoughts.

[Eva]

Hi Fran,

 

thinking of you today and giving you and your daughter lots of <'> <'> <'> <'> .

 

Stay positive and calm, which I know can be hard with what you're going through at the moment.

 

Evaxxx

[Frangipani]

<'> <'> <'> <'> thank you. <'> <'>

 

I have only just got in its almost 7pm just letting you know she is out of the danger zone. The tumor hasnt changed and it isnt responsible for everything going on.

 

Just need to catch my breath and will tell you whats happening a little later once I get dinner etc organised. Sorry have a terrible headache. Its been a loooonnnggg day.

 

Just want to put your minds to rest about the tumor, it is such a relief.

 

Love

Frangipani

 

xx <'> <'>

[smiley]

Fran <'> <'> <'> <'>

 

Thinking of you <'>

[Kathryn]

Hi Frangi,

 

Glad it's not as serious as you thought,

 

Catch up later when you've had a rest

 

<'> <'>

 

K x

[Flora]

Phew <'>

 

Flora

[Suze]

what a rollercoaster , you must be mentally drained and shattered.So relieved for you biggest hugs suzex <'> <'> <'>

[Frangipani]

what a rollercoaster , you must be mentally drained and shattered.So relieved for you biggest hugs suzex

 

Hi, <'>

 

I am back after a much needed sleep, Suze that was me to a T yesterday, I came home and collapsed with a migraine.

 

We sat down with the Paediatrician to go over everything including the MRI and had the second appointment with the Specialist Dentist and we came to the reasons why the dentist said it was connected to the tumor.

 

Starting with the Dentist, my daughters xray showed lock jaw and inflammation of the tendon that opens and closes her mouth and a lump inside her mouth where my daughter had bitten a chunk out of her face, and noticable grinding of teeth. So the first dentist noted not wisdom teeth, then after questioning me and finding out about the tumor, she started to put two and two together. Second dentist said my daughter is very anxious and said are you stressed a lot of the time, we both said yes, she gets stressed with her brother, and just had to change all our phone no's. as her step mum kept harrassing us saying mum could go to jail for giving her brother meds for Autism. When my daughter is sleeping she clenches her jaw and does it so much the tendon has become so inflamed. Its easy to conclude the tumor at work. We may once things settle down go and get another EEG to see if there is some activity for seizures at play. She also bit a big hunk in her tongue, thats where I started to questions seizures, and now they say she bit a hunk in her face how she did that I will never know. He went over some techniques on relaxation and relaxing the jaw and suggested a punch bag to get some of the anger out about her step mum. We left there and my daughter and I left there with the films of the MRI with us then onto the Paediatrician, as we left the dentist my daughter said, I really like that dentist, he reminds me of Dr. ....... the Paediatrician, and we both had a giggle and could see the personality's very similar.

 

As we arrived at the Paediatricians he passed us in the hallway on the way in, and said, its good news I just want to let you know the MRI came back normal, a big sigh, my daughter all this time didnt know what all the fuss was about, so when we went into the Paediatricians we sat her down and told her just how worried we were over the past 24 hours, the Paediatrician said he was relieved and pleased all the same that we had another MRI as we have been worrying about it and its possible link to all her health problems for a couple of months now, and I agreed I haven't had a decent nights sleep or day, as its constantly going through my mind. A huge weight off our shoulders.

 

Then we went over the report of the MRI the findings were a thin Lipoma is noted paralleling the superior surface of the corpus callosum. Callosal development is within normal limits. A cavum septum pellucidum is noted. Pituitary gland is not expanded. Signal is within normal limits. Posterior pituitary bright spot and stalk are demonstrated. Temporal lobe anatomy and signal are within normal limits. no asymmetry of development is seen and no abnormal grey matter is identified, no hydrocephalus, major vessels have normal voids. no focus of ischaemia. If you understand that

 

The Paediatrician then went throught all the reports from the Endocrinologist, and GP that were sent across, and he started to say he really needs to talk to the Endocrinologist when she gets back from holidays as there are a few things in all these blood tests I need to get confirmation with her about first. That he doesnt understand. That report was about 10 pages long,

 

He basically then said he wants us both to just rest from all this for a while, and wait for a while before we go looking into EEG's and all that. He then said he knows of two boys that their bodies didnt kick into puberty until the age of 26.

 

My daughter told the Paediatrician how the dentist reminded her of him, she said he was just like you. he said oh no...

 

He said to call him next week or everyday to find out when and if he has spoken with the Endocrinologist so he can then advise our next plan of action.

 

Sigh of relief, I had the best sleep last night, to be honest I have been a nervous wreck, it was a nice feeling to wake up to find that 'fear and worry' all gone. At the same time I feel guilt as my ex partners daughter is not so lucky, she had two plum sized tumor's removed and given 5- 20 years then reduced 4 - 5 years. None of us talk anymore. I still worry about them. Wonder how they are getting along, and if they have managed to kick that prognosis. I went through this whole thing with them all the operations and stuff supporting them where I could where they would let me. It just brought back all the memories for them of losing his wife and their mother to breast cancer, so they started giving me the cold shoulder. Its a hard decision walking away from someone in these circumstances. But I know it is what they wanted. Only this morning waking up feeling relieved about my daughter do I truly understand why they couldnt cope with me around and my kids any longer.

 

This has all been a big lesson. I am going to be a lot more gentle with myself and stop blaming myself for that relationship ending. I still feel sad that we cant be friends. oh well, I have resolved more than I imagined over the past twenty four hours.

 

On a funny note if you are ever worrying about the MRI being noisy they have changed, when my daughter first had one it was noisy like a jack hammer in a barrel, yesterdays we had ear muffs and ear plugs and I could sit with her and massage her legs while she was in the tube, and the noise was bearable and it changed sound and pitch, and would pause in between the next loud noise and I actually found myself actually starting to giggle, because their was this constant noise that went on in between the loud stuff, that sounded like a band, or organ, going cha cha click - cha cha click - and this went on for about a minute or two and its like your waiting for the band to start or someone to start singing. It helped me relax. yeah I have gone potty I am sure you already know it. They had Nora Jones?? playing in the background we could hear it during the quiet bits. The MRI took about 45 minutes and they gave us both a blanket. To keep warm.

 

Thanks for listening. One very relieved family. <'> thanks for all your beautiful posts, they kept me strong.

 

Love'

Frangipani <'> <'>

Edited July 12, 2007 by Frangipani

[Clare63]

Great news Fran <'> <'> <'>

[pearl]

<'> fran <'> so, so glad its good news.

[Frangipani]

Me tooooooo!! <'> <'>

[Eva]

That's great Frangi!!! Wonderful news!!

 

Evaxxx

[Frangipani]

That's great Frangi!!! Wonderful news!!

 

Evaxxx

 

all round

 

such a relief.

 

<'>

Edited July 12, 2007 by Frangipani

[bid]

Really glad for you, Fran <'>

 

I'm sure the Paed. was right when he said you all need a rest from this, so try to be gentle with yourselves.

 

Life can be a funny old business, can't it? <'> <'>

 

Bidx

[Frangipani]

Really glad for you, Fran <'>

 

I'm sure the Paed. was right when he said you all need a rest from this, so try to be gentle with yourselves.

 

Life can be a funny old business, can't it? <'> <'>

 

Bidx

 

 

Life sure can Bid <'> and rest...... definitely, feel like this huge knot has gone from my stomach, didnt realise how stressed I was, I think if the GP checked my blood pressure yesterday he would have flipped. You dont feel it at the time. Glad its all over.

 

Will be thinking of you all at the Meet up, have a drink for me. I bet you're looking forward to it. .

 

A trip to the Beauty Spa is what I need.

 

Have an awesome day you lot, will be thinking of you all.

 

Love

Frangipani xx <'>

 

Hope Baddad remembers to bring the microphone as he said he would, I would love to hear your voices. FINALLY !!

 

Edited July 13, 2007 by Frangipani

[barefoot wend]

Really pleased that you have the news you hoped for and enjoy your well earned rest.

 

Take care

 

Barefoot

[witsend]

<'> <'>

Luv Witsend.

[Kathryn]

Frangi

 

Thanks for the update.

 

What a weight off your mind. Take your own advice and be gentle with yourself <'>

 

K x

[Frangipani]

Thank you <'> <'> <'>

 

My daughters mouth is still in a lot of pain where she bit it, using lots of salt water wash to help.

Hurts everytime she eats. She seems to have lost more weight. Will keep feeding her banana smoothies, that should help.

 

Have a great time at the meet up on Saturday.

 

Love

Fxx <'>

[Suze]

Just wanted to send you some big big hugs and squeezes, I know the last year has been pretty hellish for you with one thing and another, you ve really had a rough ride.I,m so so pleased that your daughter is gonna be alright, can,t put it into words really.But like others have said take things easy and be kind to yourself you need some TLC too.hugs suzex

[Frangipani]

Just wanted to send you some big big hugs and squeezes, I know the last year has been pretty hellish for you with one thing and another, you ve really had a rough ride.I,m so so pleased that your daughter is gonna be alright, can,t put it into words really.But like others have said take things easy and be kind to yourself you need some TLC too.hugs suzex

 

 

Thanks Suze, I bit late getting back to this, got a bit caught up with the Southern Meet up

 

We are off to the Endocrinologist and she will have a lot more information for us, then its back to the Paediatrician so we are still not 100% on what is happening, but getting pretty close.

 

I have just setup Distance Education High School to work on a few subjects as she had to sign out of school as she has been so ill, and she is going to repeat year 11 in 2008 but instead of having to do 6 subjects throughout the course of the year she will have to only complete four, so it will be like doing it part time. The school Principal recommended we do this, they have been really helpful and kept ringing me to see if she was okay, and so has the Careers advisor. They assured me there will be no stress on her and they will allow her to do things at her pace, and according to her health.

 

Hopefully tomorrow news will be a good starting point for my daughter in knowing what the next course of action will be.

 

Wish us luck

 

Thanks again, for all your thoughts and wishes, you are amazing.

 

Love

Frangipani xx <'>

[Frangipani]

Hi, <'> Finally, but nothing to be celebrating

 

My daughter has Annorexia Nervosa. Its serious.!!!

 

The bone density test revealed her hips the bones are in the lower than normal range if you look on a chart there are three lines my daughter is on the bottom line. But worse still, her spine on the chart reveals she is on the lower than normal range of the bottom 15% meaning she is loosing bone, rather than making bone in her spine.

 

The Endocrinologist has spoken for hours with the Paediatrician and have both come up with a plan. The Paediatrician sat my daughter down yesterday and said to her, I dont want to make a mountain out of a mole hill, but we need to work together on this, and I need you to promise you are going to step up and try and help yourself, with us, otherwise I am going to have to put you into hospital in a clinic for patients with Annorexia Nervosa.

 

The Endocrinologist put her on Vitamin D call Ostelin she isnt getting enough sunlight, hard to believe living in Australia. She has Chronic fatigue because of all this. The endocrinologist also put her on Oestrogen tablets called Yasmin for polysistic ovaries also caused by Annorexia.

 

He went on to say they talked at length about the tumor and were both relieved that we had the other MRI as he had been worrying about this for some time. He didnt advise whether this was responsible for her annorexia but I put two and two together and say yes it is responsible.

 

How the tumor is responsible he went on to say but leaving that word out of the equation, her eating disorder is because she is 'Stressed' all the time. Because of the tumor in the back of her mind, her father living interstate, cancelling a 2 hour doctors appointment to come up to speed about her brother and her health. Not being a proper father. The stress of her brother, but things have improved a great deal since we increased his Risperdal. He is now interested in learning again and doing some do it yourself Programming courses, and will start procedures to get him into the transition program, a program that will support him for the rest of his life.

 

My daughter absolutely hates milk and a very reluctant eater of any dairy products, I have literally had to follow her around to make sure she has consumed some throughout the day.

 

It turns out I had borderline annorexia as a teen and an eating disorder as I did modelling for about 3-4 years and I confessed I remember on my wedding day I weighed 47 kilos and prior in my teens I thought 50kilo was fat so I drank coffee all day to keep me feeling full, and often didnt eat or just ate vegetarian. So I am the genetic carrier. I never realised but my daughter was going through some of my modelling photo's and kept an old pair of jeans that I used to wear and she said mum how did you ever fit into those, I tried them on when I was 12 and they didnt fit me so I thought I was fat. I was just tall and skinny. She said she wants to be like her mum I didnt know I had an eating disorder. Back then. Sorry this is her mind set, and some of the alarm bells I didnt recognise. Also her brother was on Ritalin and it made him really skinny and she used to look at him and say he has your build mum, when you were young and she thought she was fat, this all started when she was nine. Being in creative arts and dance and singing, ballet, you know the merry go round parents get onto with their daughters to keep them happy.

 

To cut a long story short, the Paediatrician and the Endocrinologist and a Dietician are going to work together. The Paediatrician has advised us he is going to be the number one person in our world, holding our hands through this. He doesnt want to send my daughter back to the Community Health counsellors, he is angry with them, as we went to them 3 years ago and ongoing for help and all they did was stuff it all up. So he has promised, he is going to get things right with my daughter, and said to her to say to your father, WHY didnt he call the Paediatrician and make another appointment after he cancelled the last one.

 

I think it scared my daughter thinking she would end up in a hospital, to be honest when you look at her tests I am worried about everything she does, especially picking anything up or lifting or falling over as she could break a bone quite easily.

 

Well, I guess on the positive side, the tumor so to speak hasnt grown around her mouth as the dentist had me thinking. But it is affecting her mind, causing all this stress. Mostly doing damage while she is sleeping. We are going to have to get a mouth guard for sleeping from the dentist. Its especially molded.

 

No wonder I lie in bed at night saying over and over, O God, O God, O God, O God,............ help us. I am feeling really strong and positive and shook the Paediatricians hand as we talked on about things and said I know we are going to get there. My daughter and I are very strong spiritually and have some awesome friends and mentors and pastors and positive people around us, and we are going to get through this. I told my daughter she has SOOOOOOO.... much potential if she was running on all cylinders. If anything this has made her determined, her problems, though they were invisible are no longer going to get swept under the carpet, they are not in her mind, or mine, they are real. Best of all, we have been blessed with some truly awesome people around us, that will make her want to get well. if she doesnt, he told her its her future generation at stake, does she want to have a family etc. I know she does, despite all this there is a young man very in love with her. He is a really decent boy too, and the team leaders at the church assure me he is trustworthy. IYKWIM

 

Enough said, as you can see, we have a lot of work to do. But it is achieveable, that all depends on my daughters constitution now, and I know it is strong regardless of what all her tests say. Especially now, that her mum and doc hear her cry for help.

 

I owe this forum big time, it has helped me soooooo much. Thank you 'everyone ' <'> <'> I wish you all lived in Aussie but I am so glad I found you. You have helped me no end. Thank you <'>

 

Love

Frangipani xxoo