Posted by Elaine (E.T.) (24.253.156.103) on August 25, 2001 at 23:30:12:
In Reply to: How long has she had them and------ posted by Donna on August 25, 2001 at 23:14:01:
I am going to try to answer, but please bear with me as I am in a cycle now, tonight is not too good. My daughter is now 12 - 13 in February. I noticed her headaches when she was about 9 months of age. She was a very good baby, never cryed etc. Just once in a while she would go on for a couple of weeks for 20 mins at a time, several times a day screaming an pulling out all hair on one side of her head. She would smash her head against her crib aslo. Having been diagnoised myself with clusters, I suggested to my family doctor that I felt that this is what she had. Her cycles were always when mine were. As they are today. I was sluffed off, (basically told that I was crazy) She was not only too yonge but female. Well, now we have a different doctor who takes our pains seriously. Yes she has been seen by about 5 peadiatric neuroligists, admitted into the Hospital for Sick Children in Toronto, EEG's and Sleep deprovation EEG's, etc. Yes, they are those nasty clusters. BINGO! I was right! Please don't get me wrong, I am not happy that she has them, but I am happy that her pain is recognised. She has spent the last month in England, we live in Canada. Even with our different diets, climate and weather, we are still on the same cycle. WOW! I am being treated with Epival as a preventative which helps alot, and Stadol N/S for pain (I am tolerant to everything else) and also my doctor does nerve blocks any time between 9-5 mon-fri. (I am buggered on weekends). I can get into his office with 5 minutes notice. He is great! He doesn't want to put her on the Epival yet as for the side effects at her young age. The nerve blocks only when extreme (about 5 times a year). For pain, well tylenol 3's for now until she becomes tolerant. No anti-imflamitory drugs seem to help her or I. Please feel free to e-mail me anytime at cruzcool@excite.com
Hugs, and scalp massages,
Elaine (E.T.)