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Ginah

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    Ginah reacted to kcjstaine in Updates from members - successes or not   
    I have been on the site only once before as a poster. About 2 years ago. My son dx TS 3 years ago. There is sooo much literature out there to sift through and stories to read about. I'm curious how many of you have seen TS proceed in the way most of the medical sites say it should (fully recognizing that this is very much a case-by-case condition). But most of the peer-reviewed studies say that the time of highest symptomology is between ages 8-12 or 9-13. Followed by a reduction in intensity as adolescence continues. For those of you who have travelled through this time period with your children - can your verify this statement/contention? With those who have older children....mid to late teens - what have you observed? The data says that about half of all TS patients are essentially tic free by 18 and another 25-35% are substantially reduced by that age as weel. I am hopeful that my son, as well as the vast majority of children will "grow out of" the days of high symptomology. It's just nice sometimes to get reinforcement of that hope by those who have travelled that road already. Any and all responses are appreciated
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    Ginah reacted to lulu4 in First ivig next week   
    Matter of fact attitude and calm reassurance helped our daughter (12 yo) through her fear. Lots and lots of liquid is critical. Yes, start that liquid a day or so before, and keep pushing liquids for days afterwards! Our daughter wasn't crazy about Gatorade, but did drink a few, but drank a lot of LifeWater. She probably had about 6 bottles per day during the 2 day procedure. The following day she slowed down a bit and ended up with a horrible headache. I don't really subscribe to the headache is a good sign thought. The dr. increased her pain meds for 24 hours and we went right back to pushing those fluids. She was on high fluids for a week. When she went back to school, I sent her with one or two drinks per day for a week and talked with her teachers about allowing her to have them to prevent headache. They were very cooperative and my daughter did not get any more bad headaches...Some initial signs following ivig that there was some progress included her willingness to go downstairs by herself (which previously she was scared to do) and some increased independence. However, there was not a lot of progress within the first four months. After that, the progress became rapid. We are 10 months post ivig and she is doing so well. Not 100%, but probably 95%. She and our family are so different than we were a year ago. We are so grateful. I wish you the best with your son! I hope the procedure goes smoothly and that ivig does for him what it did for my daughter. Blessings!
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