Couldn't find what you looking for?

TRY OUR SEARCH!

Hi, my son is 5 years old and he is diagnosed with ALS. I don’t know what to say but that I am desperate. No one in the family did have similar disease. I don’t know what to think and I don’t know what to do. If someone had similar experience please tell me about it.

Loading...

Hi, some form of ALS is inherited while the other is not. This is very severe disorder which affects people from 40 to 60 ages. However all other people may be affected. Specific therapy doesn’t exist and only therapy is symptomatic. Also some people need mechanical ventilation to prevent pulmonary failure. Mentally your son is completely fine so you have to communicate with him normally.
Reply

Loading...

Hello,

I am really sorry to hear about your son, that's a terrible disease and he's so young!
I am researching comparables to help save Jenny's life and I it would be very helpful for Jenny's family to have more info on your son's condition.
If you click through to the blog (http://jenjensfamily.blogspot.com/), you’ll see that some doctors suspect she has a rare form of ALS. There is also a possible link to the HPV vaccine, given that her third Gardasil injection occurred not long before her family began noticing the first symptoms of her illness, but doctors are not sure whether Gardasil played any role in Jenny’s illness.

We are desperately looking for other cases that might be comparable to Jenny’s. Please read the sidebar in blue (“Am I a Comparable?” http://jenjensfamily.blogspot.com/).

The cause of Jenny’s illness remains a medical mystery. Finding relevant comparables – fast – could help to solve that mystery and thus provide a crucial clue to finding the treatment that could save Jenny’s life.

Thank you,
Clarence Berger-Greer


**link allowed by admin**
Reply

Loading...

I have an 8 year old boy that has been in and out of doctors for the last two years. I have been told by a couple of his physicians that hey suspect a very rare form of ALS. We went to Johns Hopkins this past October where they also agreed that he had an extremly rare motor neuron disease. We wait, have tests, and wait some more. I am going back to the neurologist in a couple of weeks. I did get a call from the neurologist stating that my son's frozen biopsy did have some results. However, he was reluctant to discuss the results with me by phone. He did say that he had to bring more physicians on board. I am concerned that he does have ALS. Can you help me with some information and/or symptoms about your child. I am also desperate. I am very afraid!
Reply

Loading...

HI...

I am so very sorry for what you and your family are going through. Before accepting the ALS diagnosis, please look into Lyme disease. It is frequently misdiagnosed as ALS because once the Lyme bacteria penetrates the central nervous system, it can cause identical symptoms. Try Googling Tom Coffey Lyme and you will get a remarkable story on the subject.

Doctors don't know much about Lyme, just the basics. You would need to find a pediatric Lyme specialist to have your son tested and properly evaluated.

I don't want to give you false hope, but I believe it's worth following up.

Take care.
Reply

Loading...

you posted 3 - 18 - 08 - it is now Aug. '09 - How is your son now - do you know any more then you did last year? My daughter was 23 when she was DX with ALS - she is 38 now
Linda
Reply

Loading...


Hi ! We live in Finland Rovaniemi. We have a 12-year old boy, who has recently diagnosed with ALS. It was a huge shock and we don´t accept the diagnosis. Both parents have a medical education thank god and we are now searching answers elsewhere than this university hospital of Oulu. We remembered that our boy had couple years ago an tickbite in his left arm but we didn´t realize / notice it then. Now his has had all kinds of symptoms ( weakness of muscles, muscleatrophy, cysts in brain and in arm, arthritis in fingers etc. ) How is your son doing now? It would be wonderful to hear more about your life with ALS.
Reply

Loading...

it is so sad your kid is diagnosed with ALS how can you take care of him when he become a teenager
Reply

Loading...

hello my name is dina finegold i am so sad i heard your son is only 13years old now he is diagnosed
ALS it is hard for you
Reply

Loading...

Im sure I'm responding the wrong post. I just want to put it out there that the reason my daughter was initially diagnosed with childhood ALS is because the standard test for SMA only covers about 95 percent of cases. It takes a ecoding of the entire SMN gene. They did find a point mutation on her gene confirming SMA. Lime cannot alter the genes so if you have both tests and either is positive you have SMA. I just don't want to give false hope to kids with SMA. Thank you!
Reply

Loading...