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hi! my 6 year old son is undiagnosed with a possibility of 4h syndrome which is not even an officially named leukodystrophy yet. we have worked with cincinnati children's hospital medical center for about 4.5 years now and also dr van der knapp in amsterdam.
it sure is frustrating not having a diagnosis.
my son will be 4 years old soon and he is still undiagnosed.. doctors dont have a clue.. my son has had alot of doctors veiw his case but its crazy how much info is out there and no diagnose.. but i can say that im very lucky to still have him he is a fighter.
hi! what kind of symptoms does he have? what kind of testing have they done with him? it sure does seem like with all the docs know about our bodies that they could help out more, but i guess that is the way it goes. are they positive that it is a leukodystrophy? we went around and around for a long time with neurology before they had a good clue that it was a leukodystrophy, so i understand your frustration. the only way that i deal with all of it is my son is full of life! he doesn't let much get him down and it keeps me going! tell me about your son! take care
I have been diagnosed with an adult onset of Leukodystrphy of unknown origin so I know how frustrating it is not to know, makes it quite difficult to do any research since they taget specific forms of Leukodystrophy.
another member here mentioned to me that even having a name for your disorder may not change a thing. this is very true. it makes us feel better to have something to pinpoint but most of these disorders are so new that there is very little that can be done medically at this point in time. my son is very strong headed and he fights this on a daily basis without even knowing that "something is wrong with him". if you haven't already, get into occupational and physical therapy! i have seen my son make improvements in some areas and be able to maintain his ability in others. without a diagnosis it is so hard because we don't have a timeline of what comes next. but fight it! you have a lot to do with what comes next!
anytime you want to chat!
Hello everyone I just joined yesterday!! I have a 15 month old daughter (my only child) and they still don't know whats going on!!! She has had a muscle biopsy, spinal fluid taken, blood work left & right, 4 MRI's done, and the even sent her newborn screening tests to the netherlands!! I am so glad everything has come back normal but it puts us back at square 1. She has really bad reflux, and aspiration so she has a GTube. She dosn't roll over, sit up, or speak. She is seeing PT, and Speech thearapy on a weekly basis. She also has the infantile spasms. Is their anyone going through the similar symptoms? I would love to hear from you!!
Hi I just joined today. I have a 10 almost 11 year old son who is also still undiagnosed. He has an unknown leukodystrophy.
I had mentioned at one time that my son was undiagnosed for almost 20yrs...he is 25 yrs. old now.After all these years and many tests and lots of research we now have a name for his leukodystrophy.As hard as it may be on you not knowing ...a name will not mean a cure. Treating our children as children and treating their problems as they arise is all any leukodystrophy parent can do...and lots and lots of love . LBSL is the medical term for my sons leuko...if you need to know more just ask me and I will share what I know with you.
My son was finally diagnosed in Aug, 2007 with Hypomylination Atrophy of the Basal Ganglia and Cerebellum. It took 4 years, 5 different hospitals, and many different test to find out. Dr Van der Knapp diagnosed him after seeing his MRI'S.
I hope that you will all find the answers you are looking for...never give up the chance to know what is robbing your child of his or her health...just remember to help them everyday to live up to their abilities and search for community support programs for yourself and your child. It really does take a village to get thru this type of disorder. God Bless.
Hi! My 3 year old daughter is undiagnosed with a possibility of 4h syndrome also. It is very frustrating not having any information. We are also involved in a study in the Netherlands with no information yet. I am behind you in the age of our children, but maybe we could still help each other. I would love to hear from you. I didn't think that I would find anyone else with similar problems. I would like to compare notes. I am new to this site. I just barely joined because of your post. I am not sure how this all works, I have never joined a group thing before.
MY 2 YEAR OLD SON STILL HAS NO NAME FOR HIS LEUKO... AND IT IS VERY CONFUSING AND HE HAS HAD 2 MRI'S AND 1 MRS AND TONS OF BLOOD WORK AND STILL NO ANSWERS SO IF ANYONE CAN HELP PLEASE FEEL FREE TO I AM VERY CONFUSED ABOUT EVERYTHING THANKS
My son was diagnosed with 4H syndrome last month by Dr. van der Knaap. I would love to chat with you.
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