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Any information on Loes score will be appreciated. Is it possible that there is brain damage, but at some point it stoped and did not progress further?
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ALD / AMN
- By AA
- Posted October 5, 2009 at 7:12 pm · 7 replies
- In Treatment and therapy
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- By sjm
- Posted October 5, 2009 at 11:44 pm
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Hi
Have you contacted the Kennedy Krieger Institute. I think that would be a good thing to do. I am sorry you are going through this, I know it is very distressing, the worst. My nephew had ALD and we are dealing with his lose. I know ALD is a bit different from AMN which is probably what your son has. AMN is the adult form, but I am not sure at what age it starts to be classified as adult AMN. Minnisota childrens hospital is the leading hospital in the States treating ALD, they might be able to answer some of your questions too. Has your son seen a good doctor to help you. I know there is this huge gap in information, I spent many hours on the internet searching for answers. The doctors are very lacking in information. You have to get him on a very low fat diet which is one thing he can start to do now while you are searching for answers. And Dr Singh at (I think) North Carolina university is doing a study on Lovastatin to help lower VLCFA. I may have already mentioned this to you in a previous email. I know how difficult this is to deal with.
best wishes
- By sjm
- Posted October 6, 2009 at 12:24 am
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Hello again
The nurse at Kennedy Krieger can be reached at
hollandsworth@kennedykrieger.org
And Dr Inderjit Singh is at MUSC children's hospital. You could probably find a contact number for him on the internet. I spoke to him once, he was very nice.
And of course Minnesota children's hospital. Some people have talked about Dr Eichler too a neurologist, on this site but I am not sure where he works.
- By Quiller
- Posted October 6, 2009 at 7:44 am
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De, Echlier is in Boston MA at MA General-my son sees him
- By Charlestonlady
- Posted October 6, 2009 at 10:10 am
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Hello--to make an appt. with a doctor from MUSC in Charleston, SC the no. is 843-792-1414. I'm sure they can direct you to Dr. Singh.
- By marinemomkerry
- Posted October 8, 2009 at 11:34 am
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MUSC is great hospital, if my son had gone there when he had the first seizure out of state, he would have been diagnosed at the time and been 7 months earlier in getting the transplant. his loes score early september when we got to minnesota was 17. there was further decline in brain for 4 more months. even so his tx was good and we continue to work with him and he continues to respond to treatment.
dr loes in minnesota came up with that scoring system to determine brain involvement for ALD and if the child could be transplanted. before the use of IV mucomyst they would not like to do one with a score over 9. once they began the mucomyst by mouth it was better, not great. by IV the med is the magic bullet for kids who wouldnt have a chance otherwise. not every hospital uses it.
- By Fred48
- Posted October 8, 2009 at 1:25 pm
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According to my experience (in layman's terms), yes it can stop, but every case is unique. From what I have been told, if the affected area on scan shows up bright with IV contrast enhancement it is active (you don't really want this). If scarring is evident but it does not show up bright it is likely dormant - a sign of previous activity. KKI (Dr. Raymond), MUSC (Dr. Singh), MGH (Dr. Eichler), and Dr. Charlie Peters in Kansas City (Bone Marrow Specialist) are all excellent resources to help you increase your understanding.
I found Dr. Peters to be most helpful and tremedously skilled at explaining things - he is a gem.
God bless - FredM
- By ss12_as12
- Posted October 10, 2009 at 9:32 am
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my husband has AMN and yes it is one of the worst things to go through but with alot of freinds and god you well make. scott (my husband) was about 27 when he first started having some problems walking. we went to dr all over the state of kentucky and finally found and cyst on his spine after 4 spinal surgery he was alot worse and we were getting no help. this went on for about 4 years then our family dr sent us to the mayo clinic in jacksonville florida that is where they found his disease , ten we went to kenndey kr. where we meet dr raymond. he told us that there really is not alot that they know to do about this disease. scott is still walking with alot of help and he falls alot but we keep him going i am not going to let him give up. he does have alot of pain but our family dr keeps in contact with dr raymond and together they keep it uncontrol. we live on a small farm in kentucky and scott stays really busy. if i can be of any help please feel free to contact me. or if you just want to talk email me and i well give you my number aksshelton@gmail
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