A number of progressive neurodegenerative disease can cause (or even present themselves) with swallowing problems -- as Darren Lee posted, it is often referred to as dysphasia. In my kids, degeneratio n...
I am so sorry to hear about your friend's child. Menkes syndrome is caused by a genetic defect in the ATP7A gene which provides instructions for making a protein that is important for regulating coppe r...
I would see your doctor ASAP if you are experiencing symptoms with your gait combined with memory loss. This could be a very early sign of a serious neurological issue.
Do you know the cause of the sensory ataxia? Is it genetic? Probably so and I would get tested to see if you can find the genetic basis for the ataxia.
Look into Red rice yeast -- but please note that the FDA made RRY producers in the US take out one of the key components of it because this oriental fermentation product was competing with the emergin g...
Yes! And I experienced this firsthand with my twins with a lack of a diagnosis for close to two years because of "doctor's mistakes." Mostly it was lack of follow through and attention to the case a nd...
Definitely talk to your doctor about this. Ibuprofen is an NSAID -- a nonsteroidal anti-inflammatory drug used for pain or inflammation. I assume you are using this for both symptoms?
My twins have severe ataxia as a result of their genetic cholesterol disease. Unfortunately, it's something I think about a lot. There could be a number of causes for it and I worry for you. There is...
Contact the folks who run the World Stem Cell Summit (link below) -- I find them to have the most current knowledge in this area and they are up to date on the options.
I have learned recently learned that cholesterol disruptions in the brain could play a role in schizophrenia. Here is a science article where they did a study on patients hospitalized in psychiatric institutions...
Yes, I have seen this in kids like mine and other families I know with children who were born with genetic diseases that are fatal. You need to see a doctor (I suggest a geneticist) RIGHT AWAY. If y ou...
No. And I don't think nurses should be able to strike either. I have been through two nurses strikes at one of the hospitals where my twins are treated. It's a nightmare and it has caused a lot of st ress...
"Patient advocates" can be Mom's just like me. Truthfully, I did not want the job or the title because the job really stinks. I thought I would be a "soccer Mom" but instead I was blessed with identic al...
I would check into Carlson Fish Oil - they show on their labels that they are contaminant free of PCBs -- according to the label the product is t ested...
The two brands of fish oil that I have researched are Carlson Fish Oil and Nordic Naturals. But there are plant based DHA and Omega 3-6-9 products you can buy.
For me, this depends on the situation, the stage of the case and the relationship you have with your doctor. With my twins, our doctor is highly involved in our case and is trying to move cutting edge treatments...
Absolutely, yes. When you have terminally ill children like I do, you need to find answers and treatments to help them. What matters most is intelligence and compassion and how good a doctor is at tre ating...