Hyberbaric Oxygen & PET Scan

[Carol-Lewin]

    
      Re: Hyberbaric Oxygen & PET Scan
    


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Posted by ccf neuro M.D. on June 01, 1997 at 15:55:22:

In Reply to: Hyberbaric Oxygen & PET Scan posted by Carol Lewin on May 26, 1997 at 22:59:51:

: My 4 year old is athethoid ataxic (low tone abdomen/legs) and doesn't talk yet.  To keep the facts short we had no known birth trauma but he seems quite CP like but does not have a diagnosis of CP.  He has had normal MRI's, CT's, and EEG's since age 6 months when he began seizures.  He had grand mal seizures for about 1 1/2 years, stabilized well on low dose of Tegretol and, great news, has been seizure free for 2 years.  He has had significant blood work to eliminate many things and doesn't have Dystonia we think as a primary problem althought it seems to be a secondary issue.  He is in good school environment getting PT, OT, and speech.  Issues currently are: he is being tested for AT because many signs are positive but we don't have a conclusion and certainly hope it isn't AT.  We are interested in Hyberbaric Oxygen Therapy to improve cell regeneration.  Can you point us in a direction on this matter?? Second, we are interested in a PET Scan.  Will be talking to his Neurologist this week about such a scan but would like to know outcomes from others about this scan.  I truly believe the metabolic function analysis from the PET can be useful, but doctors seem hesitant to do this test and the data and results seem scant.  I hope I can find some results so that I can convince my Dr. to order this for my son to continue to research his issues.  THanks so very much , carol lewin
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I am not aware of any role for PET scanning in the diagnosis or treatment of spinocerebellar degeneration disorders like atxia-telangiactasia, but to be certain, I did I search of the medical literature for the past 20 years on your behalf and found no articles that mention either PET scanning or hyperbaric oxygen therapy as having any roles for this disease. Hyperbaric oxygenation is generally reserved to treat conditions in which there is severe or life-threatening oxygen deprivation that requires the immediate maximization of oxygen in the blood. Carbon monozide poisoning is a good example. Because neurodegenerative disorders are not the result of oxygen deprivation and because no data exist to support the use of such treatment for such diseases, I could not in good faith support your contention that such may be useful for your son. Likewise, PET scanning is generally reserved for very highly specific questions (usually preoperative for epilepsy surgery) or for research purposes; PET scans are fuzzy and
provide only nonspecific information about decreased or increased metabolic function in regions of the brain; they do, sometimes, however, demonstrate clear abnormalities where all other neuroimaging studies fail to do so; whether or not this information would be medically USEFUL or not, however, is another matter, and again, I have not found any data to support the use of PET scanning in the diagnosis of AT. You might wish to contact the Ataxia Telangiectasia Children's Project at: 398 West Camino Gardens Blvd. Boca Raton, FL 33432 (contact person Brad Margus); phone# [phone]; FAX [phone]; and/or the National Ataxia Foundation: 750 Twelve Oaks Center 15500 Wayzata Blvd.; Wayzata, MN, 55391; phone [phone] or FAX [phone]; e-mail ***@****; web page www.ataxia.org--- these organizations may be privy to research information relevant tp your questions about these two modalities that is not yet available to the general neurological community. Information provided in the Neurology forum is intended for general medical informational purposes only; diagnosis and treatment of your specific medical condition in question should be conducted strictly in conjunction with your (son's) treating physician(s). We hope you find the information provided useful.