Willow and I went to The Ellen Barron Clinic (which is the QLD equivalent) back the week before Christmas before a lot of her actual issues were found and I found it really good.
It was extremely hard being 450kms away from DS and DH for a week, but the nurses and support networks which they have set in place were awesome.
Would highly recommended it for anyone who is having sleep issues.
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15-04-2011 15:25 #41
15-04-2011 15:36 #42
Its something ill look into. Im not sure if its her middle ear issues leading to sleep problems though
17-04-2011 10:30 #43
Hi Everyone :waves:
I haven't posted recently because I was not in a good frame of mind. But last night we were spasm free and didn't even need Midaz! We're still in Royal Children's Hospital and after wat seems like endless spasms, meds and room changes I think we have found the right cocktail. There's been a lot of debate about whether she's having epileptic seizures or muscle spasms. They're treating both as she has both conditions but I think we've finally determined that her episodes are CP spasms brought on by 2 infections (RSV and Adno) together with severe side effects of the Pred she was on for the Infantile Spasms. Not only hav they controlled the spasms, but I also have a happy, content baby. For those that have read my posts u'll kno that this is the single most greatest achievement ever. Who cares bout CP, Epilepsy, GERD, FTT?! I got to have a coffee in the cafe while her dad stayed with her in the room :celebration:
So that's my update! Hope u all r doing well too
19-04-2011 09:20 #44
Glad to hear things are looking up Kiz. So glad to hear your DD is happy as well. Sometimes it's those "small" achievements which make everything worthwhile.
I remember when Willow started putting a sippy cup in her mouth, and then she drank water. I don't think I'd cried so much in so long. After months of screaming if we put anything near her mouth, it was something so small which meant the world to us...
Hope you can get to go home soon. It's hard being so far away from home. xx
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19-04-2011 09:42 #45
We're going home!! HOORAY!! It IS the small things that mean the most. Bree being happy means more then ANYTHING!!
21-04-2011 13:23 #46
Forevermine Hope your DDs ears are feeling better
Kiz Glad to hear you're home now
J got his hearing aids today. Ive never seen him smile so much as he did when he hear mine and DH talk to him. It was amazing and brought a tear to my eye. Although I forgot how hard they are to put in tiny tiny ears
21-04-2011 18:24 #47Senior Member
- Join Date
- Mar 2008
21-04-2011 19:06 #48
Hi can I come and Join in. Never thought I would end up here (noone does) I have 2 DDs but my 2nd is SN. We have been getting her tested since she was 7 1/2 months old as she was/is failure to thrive. she is now 16 months today and we have just found out she has got Cystic fibrosis. Im a bit shocked but relieved that we finaly know whats wrong
21-04-2011 21:16 #49
AliG, My DD (14 months) is in the last stages of being confirmed with CF. So I share you battle.
I've no time to say much now, but hopefully will in the morning.
Feel free to PM me or anything anytime.
22-04-2011 15:34 #50Member
- Join Date
- Apr 2011
hi well my little girl is 11 and a half months. she has had 12 possible seizures first thought to be symptoms of silent reflux since about 2 weeks old. Then she has had 3 grandmal seizures , the first in early feb. then 2 thursday week ago. We are now waiting on refferal to see a paediatric neurologist in the near future. i have 2 other girls 5 and 3 that are fine and have never had a seizure.
Mia's seizures have only happened in her sleep or as she is waking up or going to sleep.
i guess i am looking for you other parents out there that know where i am coming from. 2 of the 3 grand mal seizures i have been holding her at the time, and it has scared the pants off me. My husband has seen 1 of them but i feel her doesnt really understand where my brain is as i am constantly jumping every time she moves when she is in bed etc. And our other family that is close by also seem to sweep the issue under the rug, and wont consider the possibilities of another seizure..
My biggest fear is another seizure and what to do when it happens, we live 100km from any town and most of the time i am here with my other kids and hubby is out working.
but i am trying to keep positive, and i know epilepcy is managable and i have a happy otherwise healthy little girl that could be so much worse off.
sorry for rambling on..
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