Cold cap support

Katonthemat1
Katonthemat1 Member Posts: 3
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

Hi  I am a recently single mother of 5 kids, 3 of which I adopted through NJ foster care. My 6 yr old son has fetal alcohol syndrome disorder which is difficult to explain and understand without researching quite extensively. Long story short, his aggressive behaviors are extremely increased by change/instability. My diagnosis has been tough on him during 13 day hospital stay (long due to infection acquired during surgery) he was suspended from bus, lunch and recess. As per 1st onc advice I began wearing scarves and hats around house to prepare him and was met with a violent reaction by him. Changed dr and 1st appt at MSK in Basking RidgeNJ   on 6/5. Anyone know of support groups in area that may help me with caps? 

Thank you!

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  • hope49
    hope49 Member Posts: 370
    edited May 2014

    Hi Kat, 

    Sorry to hear the difficult time you are having.  I'm not aware of any support groups for the caps themselves, but I would recommend a few things...

    -go to the 'Cold Cap Users Past and Present' board and post your question.  those of us who used the Penguin Cold Caps rented them and have had to send them back after chemo, but there are others who used ElastoGels, which they purchased maybe someone would be willing to share with you or sell them at a lower price

    -check out The Rapunzel Project - i know they donate freezers to medical centers for the caps, they may have ideas on local support groups

    -call someone at Penguin Cold Caps and ask if they know of any local resources

    The caps can and do work and I'm happy to say I saved my hair using them when I went through chemo last year. Good luck to you!

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