Frangipani Report post Posted August 22, 2007 (edited) Hi, Don't want to worry you, sorry I haven't been around much lately. <'> hope you are all okay. <'> May I ask for your positive vibes for my daughter. She has had another relapse. She was invited out the other day with her best friend and her mum to Ikea they were there over 3 hours - my daughter said it felt like 6 hours she said she had to keep sitting down. She came home with a burning temperature, then flu like symptoms for a couple of days. Then the same problem with pain in her mouth and right side of her jaw - feeling like it is bruised, and it isn't glandular. She can't chew at all again like last time she has been on soft liquid foods, and regular doses of Ibuprofen. I spoke with the dentist they said it isn't dental related either. They said they could make up a splint for her mouth, but said they really want me to get back in contact with her doctor as they believe it is related to the benign tumour in her brain. Has anyone had anything like this to ease my mind. ? Not sure at this stage what we are dealing with; but I certainly have butterflies in my stomach typing this out. We have an appointment with the dentist and Paediatrician tomorrow to find out what is really going on. I had coffee with my friend the other day and she said her husband had a 'benign tumor' also, and he had 5 strokes because it was pushing on the pituitary gland. Oh bother, that is playing on my mind a bit. Makes me realise I need to take this more seriously. Lets hope this is nothing. love Frangipani xx Your prayers would be greatly appreciated at the moment. My prayers are with you too <'> Edited August 22, 2007 by Frangipani Quote Share this post Link to post Share on other sites
sash Report post Posted August 22, 2007 Frangipani, Im so sorry to hear about your daughter. Can you contact another doctor? Im sure any doctor would be happy to see her but I dont know what has happened in the past....perhaps you have an assigned doctor familiar with everything? A big hug to you both You are both in my prayers... Sash...x Quote Share this post Link to post Share on other sites
ellisisamazing Report post Posted August 22, 2007 Frangipani <'> Gosh, You must be in bits about this.....thinking of you both, with positive vibes. <'> <'> Lisa xx Quote Share this post Link to post Share on other sites
ASue67 Report post Posted August 22, 2007 Not sure what to say, you must be worried sick. Sending you loads of pv's and hugs <'> <'> <'> <'> <'> Quote Share this post Link to post Share on other sites
bid Report post Posted August 22, 2007 <'> Thinking of you all, Fran <'> Bidxx Quote Share this post Link to post Share on other sites
pearl Report post Posted August 22, 2007 <'> Fran <'> Quote Share this post Link to post Share on other sites
KateBall Report post Posted August 22, 2007 I can't imagine what you're going through. But I know I can think positive vibes for you and if you don't mind a prayer or two. And a cyberhug <'> Quote Share this post Link to post Share on other sites
darky Report post Posted August 22, 2007 sending you loads of healing vibes and these <'> <'> <'> <'> <'> <'> I was on another forum and a guy on there said he had a burning temp, aches and pains and has lost 4lbs in weight in 2 days, he says he has the flu. There are some nasties around, maybe the temp etc was the flu, but regards the mouth thing, I have no ideas. I hope your daughter feels better soon and you get to the bottom of this problem with her. <'> <'> <'> <'> Quote Share this post Link to post Share on other sites
Kathryn Report post Posted August 22, 2007 Your prayers would be greatly appreciated at the moment. <'> Can't say much: I'm at work at the moment but praying and sending out lots of <'> <'> for you and your daughter as I type this. Hope you get to the bottom of this, K x Quote Share this post Link to post Share on other sites
Bagpuss Report post Posted August 22, 2007 Huge hugs Fran, and lots and lots of positive vibes <'> <'> <'> Quote Share this post Link to post Share on other sites
wishingwell Report post Posted August 22, 2007 You and your daughter are in my prayers. God Bless! Quote Share this post Link to post Share on other sites
annie Report post Posted August 22, 2007 <'> <'> Fran <'> <'> Annie xx Quote Share this post Link to post Share on other sites
carrieq Report post Posted August 22, 2007 Thinking of you and your daughter Carrie Quote Share this post Link to post Share on other sites
Frangipani Report post Posted August 22, 2007 Thanks <'> She isn't well enough to see both so hopefully we will see the Paediatrician. He will have some answers. Frangipani, Im so sorry to hear about your daughter. Can you contact another doctor? Im sure any doctor would be happy to see her but I dont know what has happened in the past....perhaps you have an assigned doctor familiar with everything? A big hug to you both You are both in my prayers... Sash...x Hi Sash <'> she has a brilliant Paediatrician, if its beyond him he will refer her onto another specialist for more tests - she had an MRI a month ago - but these things an change overnight. Lets hope its nothing. She had extensive tests with an Endocrinologist too. So just keeping her as comfortable as possible. Even finding it hard to eat jelly she wants me to get straws to drink out of as that is a problem too. Welcome to the forum Sash, they are a lovely lot on here <'> sending you loads of healing vibes and these <'> I was on another forum and a guy on there said he had a burning temp, aches and pains and has lost 4lbs in weight in 2 days, he says he has the flu. There are some nasties around, maybe the temp etc was the flu, but regards the mouth thing, I have no ideas. I hope your daughter feels better soon and you get to the bottom of this problem with her. <'> Thanks Darky, the flu symptoms started but vanished, its mainly this pain in her mouth and jaw feeling dizzy and headache, this afternoon a migraine and fever. Not sure if she has had a seizure in her sleep. Thinking about sleeping on a daybed in her room tonight to monitor her sleeping, maybe I am missing something. Perhaps I can see what she is doing in her sleep. other than that they may have to keep her under observation in hospital or do more tests. Hopefully, its nothing. Thank you all, for your lovely posts. Its almost midnight here. Take care, all the best love Frang xx <'> Quote Share this post Link to post Share on other sites
Guest Lya of the Nox Report post Posted August 22, 2007 <'> <'> <'> Quote Share this post Link to post Share on other sites
soraya Report post Posted August 22, 2007 my prayers are with you <'> >< Quote Share this post Link to post Share on other sites
brooke Report post Posted August 22, 2007 <'> <'> <'> Quote Share this post Link to post Share on other sites
Frangipani Report post Posted August 23, 2007 Hi, <'> <'> thanks for your lovely wishes. <'> <'> The Paediatrician saw dd today, said things are quite disastrous at the moment., he wants me to call him first thing in the morning with a very high possibility of putting her in hospital. I just asked my mum if she could come down from north coast and stay with ds and she said no, she gets too nervy. I knew I would get this response, even though her grand daughter is seriously ill and her grand son autistic. My daughter wants me to stay with her at hospital. My son says he will be fine, but I know I will be coming home every day to make sure he has his meds and cook his evening meal. He has never stayed alone at night before. Sorry for the rant, unfortunately my mother always uses this excuse. She has always been this way. Not worth getting an ulcer or upset over? she is very reclusive only when it comes to spending time with us. To top things off dd had a cold gave it to ds now my throat has gone a bit tingly too - oh brother love Frang <'> Quote Share this post Link to post Share on other sites
madme Report post Posted August 23, 2007 <'> <'> <'> Hope she is soon better. It must be very stressful for you. Can a neighbour help out with your son? Quote Share this post Link to post Share on other sites
sash Report post Posted August 23, 2007 <'> <'> <'> Feel so frustrated for you...have similar relatives Is there a friend near by that could look after/ pop in to check on your son? I know in these sort of situations its hard as you feel you want to do your best by all children. Be thinking of you...let us know what happens sash xx Quote Share this post Link to post Share on other sites
wishingwell Report post Posted August 23, 2007 Hope and pray, things could look worse than they really are! As for your mum well what can i say except i have lived with the same problem from my eldest son was born. Bless her she has all the time in the world for my lovely sisters so called NT children. And is always unwell when i need her help, passed asking! You have enough to worry about without wasting time on her reason for not being beside your family when she is most needed. Praying for your beautiful daughter. Quote Share this post Link to post Share on other sites
pearl Report post Posted August 23, 2007 Oh Fran, thinking of you & your daughter. Looks like lots of us on here get the same response from our relatives, so we know where you are coming from xx Quote Share this post Link to post Share on other sites
Frangipani Report post Posted August 23, 2007 <'> <'> <'> Hope she is soon better. It must be very stressful for you. Can a neighbour help out with your son? Thank you <'> we do have some lovely friends already lining up. don't know what we would do without them. <'> <'> <'> Feel so frustrated for you...have similar relatives Is there a friend near by that could look after/ pop in to check on your son? I know in these sort of situations its hard as you feel you want to do your best by all children. Be thinking of you...let us know what happens sash xx Its frustrating when your relatives are like this, friends and you lot are all I need thanks Sash <'> Hope and pray, things could look worse than they really are! As for your mum well what can i say except i have lived with the same problem from my eldest son was born. Bless her she has all the time in the world for my lovely sisters so called NT children. And is always unwell when i need her help, passed asking! You have enough to worry about without wasting time on her reason for not being beside your family when she is most needed. Praying for your beautiful daughter. I sms'd my mum so I didn't have to sit and listen - instead the excuses - I could sit there and giggle, oh my gosh the house will fall down if I leave - etc, etc, etc, thank goodness for sms thanks Wishingwell <'> Oh Fran, thinking of you & your daughter. Looks like lots of us on here get the same response from our relatives, so we know where you are coming from xx Its their loss. Thanks Pearl <'> Keep everything crossed, its after midnight here- big day tomorrow. Take care Love Frangipani xx Quote Share this post Link to post Share on other sites
stressedmumto2 Report post Posted August 23, 2007 Sending you loads of these, thinking of you <'> <'> <'> Hope your daughter is better soon <'> <'> <'> Quote Share this post Link to post Share on other sites
elun1 Report post Posted August 23, 2007 <'> <'> <'> to you and your daughter Elun xxx Quote Share this post Link to post Share on other sites
Frangipani Report post Posted August 23, 2007 Sending you loads of these, thinking of you <'> <'> <'> Hope your daughter is better soon <'> <'> <'> <'> <'> <'> to you and your daughter Elun xxx Thank you both <'> <'> it is inevitable that she needs help. She has bitten inside her mouth again and has a big ulcer in her mouth and all this is affecting her eating, pushing her down in weight to crisis point. She got up to 53 kilo's but I can see she is down in the 40's again. So hospital is the only way safely forward I imagine. I am getting all fluey need a crash course of vitamins. I bought my daughter a complete food replacement to build her up a bit more- hopefully we can manage this at home, but its what is going on with lock jaw and the ulcer that has us all puzzled. Only able to consume liquids becaue of the pain and zero energy, is certainly making things worse. Will keep in touch where I can. Keep well, sending you all lots of hugs, <'> Wishing you all a safe and happy return to the new school year any of you struggling some extra big squeezy hugs, you are going to get there <'> <'> Positive vibes to you all- we all need them. love Frangipani xx Quote Share this post Link to post Share on other sites
Eva Report post Posted August 24, 2007 Hi Frangipani, sending you and your daughter lots of <'> <'> <'> <'> <'> <'> <'> <'> <'> I'm sending you lots of positive vibes and am thinking about you. Evaxxx Quote Share this post Link to post Share on other sites
