 |
A Charity Forum where affected families can talk, share and learn about all aspects of the rare brain disease 'AADC deficiency'
|
| | IMPORTANT! - please read | The Comments posted here are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! The AADC Research Trust and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. The AADC Research Trust does not endorse the views of any user. |
 General Chat (Members Only) | Topics | Posts | Last Posts |
|---|
 | Introduce yourself, chat amongst friends...anything and everything goes!!!
| 51 | 322 | Romain to have an operation
Mon May 23, 2011 5:58 pm
lise |
Family Impacts (Members Only) | Topics | Posts | Last Posts |
|---|
| Which therapists does your child see? Physio, Speech and Language, Occupational etc...? Do you have a good relationship with your childs therapist? Do they listen to you? Do they understand the rareness of this disease? Maybe you see an alternative therapist? What benefits have you seen with alternative therapy, if any? Where do you have to travel to for therapy? Maybe your therapy can help another child...Let us know what you know.
| 6 | 34 | Speech
Sun Aug 30, 2009 6:58 am
vhau | | Do you have a special diet for your child, do you see a Specialist for feeding or have you found your own techniques and recipes that work. Do you worry about dehydration and low sugar levels. What do you do to keep your child nutritionally balanced. If you have any ideas or experiences which may help other families please share them here.
| 1 | 6 | Food being able to help for the diarrhoeas and con...
Fri Feb 15, 2008 8:01 am
vhau | | Equipment takes over our lives when caring for a child with AADC and at times our house can feel like a medical/therapy centre... From medical equipment to therapy equipment to communication equipment to play equipment to mobility equipment; What works for your child? Where can you get it? Can the correct equipment really make a difference? What do you avoid? Share your ups and downs with other families.
| 1 | 7 | See Romain with his new chair/stander
Wed Nov 26, 2008 8:23 am
anna10 | | Natural developments for most children are major milestone for children living with AADC. Why not share your experience with other families. Some AADC children may be developing positively or negatively as a result of taking medications. Which medications do you think affect your child’s development? Do certain types of therapy or equipment help with their development? If you have any information, which may be useful to another family, please share it here?
| 0 | 0 | | | Does your child have behaviour Issues? Are these affected by medication? How do you manage behaviour problems? Why not let us know.
| 0 | 0 | | | Sooner or later every child goes to school, how does your child cope with the stress of school? Or maybe they enjoy the whole experience? Can you tell? What support does your school provide for your child? Do you have any suggestions, which may help another family? Why not share it here?
| 1 | 2 | School
Tue Oct 14, 2008 8:15 pm
LisaF | | What does the future hold for AADC families? Do our children have a good quality of life? What about relationships with siblings? How does having a child with AADC affect us having more children? Have you lost your child to this disease? These can be difficult discussions, they will very often strike an amazing emotional cord and sometimes the next day is all we can think about...but if you have a question, suggestion or you would just like to talk about your experience please share it here. What we do share may help or even save another child or a family.
| 2 | 12 | Losing an AADC child
Sun Jun 21, 2009 1:47 pm
jbriley |  | How do we integrate our children in to a society who has, mostly, never heard of AADC deficiency? Do you avoid going out with your disabled child for fear of taunting? Does your area accommodate people with disabilities well? Are people afraid to talk to you about your child’s condition? Do you avoid the subject? Our children are suffering the same disease; lets talk and help each other.
| 0 | 0 | | | How do you overcome travelling with your special needs child? How much do you organise in advance. Is your AADC child insured for travelling in the event of accident or medical emergency resulting directly from their condition? Where have you been that caters well for children with disabilities? How do you travel, car, boat or fly or maybe the whole experience is too much to think about? Whatever your experiences or thoughts why not share them here.
| 2 | 12 | Emergency Talismans/Medical Tags
Sat Apr 11, 2009 5:55 pm
rileykat |
Medical Impacts (Members Only) | Topics | Posts | Last Posts |
|---|
| What are the most troublesome symptoms for your child? How often do they occur? How do you treat them? What treatments do you use that are not listed on our web site? Is there a pattern to your childs symptoms? Are they better in the morning than the afternoon? Learn from each other; let us know what you do?What medication does your child take? How does it help? What side affects do you see? Who monitors the medication and the dose? What else have you tried? Why? Do you know how the drugs work? What symptoms are they for? Are you aware of all side affects? PLEASE NOTE: Some of our children are on many different medications, this forum is a place where you can voice your concerns and share experiences. Please do not try medications, which are mentioned here without discussing it with your childs Consultant first...IT COULD BE DANGEROUS!
| 25 | 164 | OGC - article relating to side effect of Aripipraz...
Mon Aug 08, 2011 2:19 pm
LisaF | | Do you understand why your child was born with AADC? Do you know how AADC affects the brain? Do you know of any AADC research? Would you let your child be involved with research? Do you understand you childs test results? Do you know why your child takes certain medications? What they do? Let us know what you know.Do you know what risks are involved with operating on an AADC child? Does your child cope well in hospital? Can you explain enough about AADC to an Accident and Emergency department should you need to visit it in an emergency? As well as your regular Paediatric Neurologist should other Paediatric Specialists, such as a, Metabolic Specialist, Gastroenterologist, Geneticist, Ophthalmologist, Cardiologists, Movement Disorder Specialists, Dental Specialist, Metabolic Dietician, and Feeding Specialist, assess you child? Let us know your suggestions and experiences.
| 3 | 11 | Nathan Due to have his PEG fitted 22/2/08
Fri Feb 22, 2008 5:32 am
vhau |  | Do you understand why your child was born with AADC? Do you know how AADC affects the brain? Do you know of any AADC research? Would you let your child be involved with research? Do you understand you childs test results? Do you know why your child takes certain medications? What they do? Let us know what you know.
| 27 | 110 | AADC Conference in October 2011 in London
Thu Aug 11, 2011 1:56 pm
LisaF | | | Please find details of the all the discussions which took place at the AADC Medical Meeting in February 2008
| 19 | 66 | DVD of Meeting
Mon Jun 23, 2008 9:50 am
LisaF |
| Who is online? |  | Our users have posted a total of 772 messages
We have 68 registered users
The newest registered user is grannys angel | In total there is 1 user online :: 0 Registered, 0 Hidden and 1 Guest
Most users ever online was 78 on Tue Mar 08, 2011 10:55 am
Registered Users: None
| No users have a birthday today
No users are having a birthday in the upcoming 7 days | | Legend : [Administrator ] [ Moderator ] |
 | New posts | | | No new posts | | | Forum is locked |
| |
|
