Talking Helps
A Charity Forum where affected families can talk, share and learn about all aspects of the rare brain disease 'AADC deficiency'
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| | 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. |
 Fundraising for Research (Public Forum) | Topics | Posts | Last Post |
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 | Do you know of any outlets to sell Charity products such as Christmas Cards, Wrapping Paper & Gift Tags?
| 2 | 7 | shopping online
Tue Sep 23, 2008 11:35 am
LisaF | | Could you hold a small/large scale event in aid of AADC research, such as a Coffee Morning, Quiz/Race Night, Gala Ball or Golf Day etc? Include your idea here in the forum or if you would like to talk to someone at the Trust please contact lisa@aadcresearch.org.
| 7 | 16 | Fundraising for AADC
Fri Sep 26, 2008 2:18 pm
LisaF | | Could you run, swim, walk or be silent for AADC research. Include your idea here in the forum or if you would like to talk to someone at the Trust please contact lisa@aadcresearch.org.
| 3 | 8 | Create a Sponsor Page or Donate using JUSTGIVING.c...
Wed Sep 24, 2008 1:33 pm
LisaF |
General Chat (Members Only) | Topics | Posts | Last Post |
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| Introduce yourself, chat amongst friends...anything and everything goes!!!
| 27 | 190 | Zain's not been well
Yesterday at 7:52 am
lise |
Family Impacts (Members Only) | Topics | Posts | Last Post |
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| 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.
| 3 | 20 | Physical therapy
Wed Oct 08, 2008 12:25 pm
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 | 6 | See Romain with his new chair/stander
Wed Apr 09, 2008 7:05 am
lise | | 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?
| 0 | 0 | | | 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.
| 1 | 6 | Older siblings
Tue May 06, 2008 12:57 pm
LisaF | | 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 | 10 | Flying with our Children
Fri Oct 03, 2008 2:44 pm
LisaF |
Medical Impacts (Members Only) | Topics | Posts | Last Post |
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| 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!
| 18 | 127 | Pramipexole & Phenylephrine
Wed Oct 01, 2008 6:21 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.
| 4 | 16 | AADC Seminar in Malaysia
Mon Oct 06, 2008 5:45 pm
LisaF |
AADC February 2008 Medical Meeting Info (Members Only) | Topics | Posts | Last Post |
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| 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 |
Professional Visits (Members Only) | Topics | Posts | Last Post |
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| Please keep checking back to find out which Professional will be visiting us!
| 0 | 0 | | | Please keep checking back to find out which Professional will be visiting us!
| 0 | 0 | | | Please keep checking back to find out which Professional will be visiting us!
| 0 | 0 | | | Please keep checking back to find out which Professional will be visiting us!
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Fun 'n' Stuff (Members Only) | Topics | Posts | Last Post |
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| What do your children love to do? How do you entertain them on a daily basis? Do they have favourite toys, games, blankets or teddy bears? What do they think of animals? Where is there favourite place to visit? Do they love to travel by car, plane or train? What about music, TV and favourite children's characters and shows? Share you child's favourites with other AADC families!
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| Who is Online ? |  | Our users have posted a total of 508 messages
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