Stuff I come across in my research that might be useful to other families in the same crazy boat.
PARENT SEEKING LT DIAGNOSIS
S.W.A.N. – Syndromes Without A Name is a is a non-profit tax exempt organization that advocates for children and young adults who have been unable to find a diagnosis for their symptoms. Every time I’ve emailed them, the founder Amy Clugston has responded personally with as much help as she could offer. A great organization. http://www.undiagnosed-usa.org/
Find Zebra is a search engine for medical professionals to cross-reference symptoms of difficult medical cases. Like disease bingo. Not really that helpful for us but sometimes it leads me into new ideas about a possible diagnosis. http://findzebra.compute.dtu.dk/
The National Institutes of Health (NIH) is the nation’s primary medical research agency—by contacting a research study there we were able to eliminate one of the possible diseases for Lydia (see Not MEB post). http://www.nih.gov/
To search for clinical studies (some of them offering whole genome sequencing) go to https://clinicaltrials.gov/ Search by your best diagnosis guess i.e., ‘Muscle-Eye-Brain Disease,’ or search by symptom i.e., ‘Infantile Spasms.’
(Where you never saw it coming and then it was a train crash that never ended).
We haven’t been able to get Lydia’s seizures under control and eventually she is a likely candidate to be ‘diagnosed’ with Lennox-Gastaut Syndrome. It is basically Infantile Spasms that never end with a big kid name. These slides and associated presentations from the LGS-Foundation have taught me so, so much and I am infinitely grateful to the people that put them together and shared them FOR FREE. http://www.slideshare.net/lgsfoundation/01-friday-morning-10-2414
Actually Facebook has been the most helpful in researching this. Look for ‘Pediatric Cannabis Therapy’ or ‘Cyndimae S’miles.’ The story of Cyndimae keeps me on the edge of my seat and Susan Meehan (her mom) is incredible. Worth reaching out to her for help.
David Mapes is a chef-scientist-kind-hearted-medical-marijuana advocate. He is on Facebook and here is one way he contributes to making the world a better place: http://www.epsilonresearch.org/#!free-guide
Ah, once upon a time I wasn’t even sure if medical marijuana was legal in my state. So innocent. This is a marijuana advocacy group that provides information on your state’s local laws, assuming you are in the US: http://norml.org/states . (Sorry, I just realized a lot of these links might be US oriented. Hm…)
If you are into the nerdy depths of cannabinoids http://steephilllab.com/cannabis-science-what-are-cannabinoids/
For entertaining and candid descriptions of the side-effects of AEDs (Antiepileptic Drugs) there is no better website than Jarod Poore’s: http://www.crazymeds.us/pmwiki/pmwiki.php/Main/HomePage
THERAPY TO IMPROVE MAD BASIC SKILZ
Early Intervention comes to our house every week. Any child with developmental delays will have a referral to these services before they’ve read this blog, but I’m posting a link because it is worth re-reading once and awhile. It is helpful for re-thinking what the sessions are about and what you are trying to accomplish. http://www.parentcenterhub.org/repository/ei-overview/
Anat Baniel method is hot stuff in the world of child therapy. It is different from what your EI person is doing. Kinda cool stuff, but I’m not sure the $$$ outweighs the benefit in our particular case. Maybe once my daughter actually starts moving her limbs deliberately we’ll revisit this. http://www.anatbanielmethod.com/
Beyond Play offers an extensive selection of products for young children of all abilities – from infants and toddlers to children in the early elementary grades. Ok so I haven’t ordered anything from them but I was desperate for ideas in the beginning and this place helped: http://www.beyondplay.com/
Adaptive Mall offers adaptive equipment for children with special needs. Products range from special needs strollers to special needs car seats to adaptive toys. http://www.adaptivemall.com/
A beautiful selection of trunk support braces for your little flopster. Also full of other resources and ideas that are worth browsing. Actually this is a really cool ‘magazine’ put together by Susan Agrawal that I need to explore some more…http://articles.complexchild.com/jan2011/00263.html
Ok, I’m tired. Will work on the rest of these later….