Guest guest Posted December 7, 2003 Report Share Posted December 7, 2003 from Dale, Mom to Katy, CVID, age 19 Belinda, how's Lacey? Sorry I was out of town when you called -- went to L.A. to pick up Katy. She brought home 2 friends and my son was home - had 15 for Thanksgiving. I'm still trying to recuperate from pushing a little too far. Hopefully, you've got her home again and making progress. In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 In a message dated 1/16/04 3:08:22 PM Pacific Standard Time, dale@... writes: > what are some of the drugs you use to prevent migraines? Hi Dale, Has Katy ever tried Cafregot?? It is non-narcotic and excellent for some types of migraines. It helped my migraines for several years. I cannot take antidepressants, either, they give me seizures. My all time favorite is plain old ice. You need to put the ice on your head exactly where it hurts. She could start using the ice when she gets IVIG or the minute she feels the migraine. With my head, I need to keep the ice on for at least an hour. It feels at first as if the headache is getting worse, but that happens right before it dissipates. After 23 years of migraines/severe headaches, if I cannot control it any other way, ice is what I turn to. Have they used Prednisone on her when she gets her IVIG?? It is also an excellent anti-inflammatory and antihistamine--I don't know if they use small amounts with IVIG. The only other med that has helped me prophylactically is Atenelol--I take a small amount of it before bed. It relaxes the blood vessels. Sandi--Mom to , age 10. Immune Deficiency, Tetrology of Fallot, Pulmonary Valve transplant, Mitral Valve stenosis, chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD, Tethered Cord Syndrome. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Good Morning, , almost 14 now!!, Premeds one hour before IVIG and 6 hours after. Since doing this he has not had a severe headache due to infusions. We have been premeding for about 4 years. Before that he would get severe headaches due to IVIG. We also are at a very slow rate we start at 40 for the first 15 minutes than 60 for the duration of the IVIG. he takes one benadrl, one Tylenol and 20 mg predisone one hour before than one 20 mg predison 6 hours after. IVIG is not a problem for him. He does experience headaches but not due to IVIG. le 14, IVIG 8 years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 Dale: I was having recurrent migraines many years back (turned out to be due to birth control pills), and at first they had me taking Vicodin. Well, that's not a good plan on the long term (can you say " junkie " !???), and I was shocked to find that Toradol (like super tylenol, I think) worked nicely without any noticeable side effects (think somebody mentioned it can be tough on the liver, though?). Hope that helps -- (mom to Kate, born 9/19/02, dairy intolerant; and , age 5, GERD, dairy intolerant -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 - Toradol is basically IV Advil. Ursula Holleman mom to (11 yrs old) and Macey (8 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Wow ... I'm so sorry you were having heart problems! How scary that must have been for you. So glad you're getting better, though!!! , Mom to , almost 4, IgA Deficient, chronic sinus/ear infections, asthma and Connor, 5 Hi to all, Sorry it's taken me so long to get back into the swing of things. I had a nasty reaction to a new medication and went into heart failure last week while flying back from Chicago. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Hi Dale~~ I'm very close to Walnut Creek. Where would the booth be located? Belinda Lacey's mom, (16, CdLS, IgG deficient, IVIG) Pittsburg, CA CdLS OSG: Featured Family of August 2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 -Are they doing any if FL? It would be interesting to know where they are doing awareness booths. Jacquelin almost 4 GERD,GP,LS, and functional antibody deficiency Buddy just turned 2 years old- eosinophilic immune dysregulation, functional antibody deficiency, ED, EC, GERD, GP. Made it through 5 months of c-diff last year then we survived MRSA. This year we are doing a g-tube and port soon. On Neocate One +, prevacid granules, Zantac, and trying to add E028. GI doctors are Dr. Jolley and Dr. Putnam Immunologist- Dr. Skoda- -- In , Dale Weatherford <dale@x> wrote: > from Dale, Mom to Katy, CVID, age 19 > > anyone in the Fremont, Oakland, Pleasanton, Walnut Creek, Sacramento > area of California that might be interested in doing some patient > education work for the Immune Deficiency Awareness Week -- please let me > know. That's April 19-24th. It would involve sitting at a booth and > being available to answer questions about PID. This awareness campaign > is being sponsored by Bayer and they would do all the work -- you would > just need to " be there " and answer questions. > > Let me know. > > The great news is that Bayer is apparently doing these booths in several > different pediatric departments all over the U.S. for PID awareness > week. YEAH!!!!! > > In His service, > Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 I have no idea -- I just got calls today from two different Bayer reps -- one in my area and one in the East Bay of California area and was told that the Bayer reps were trying to locate patients and/or caregivers to add to their information booths for Primary Immune Deficiency Awareness Week. That's the first I'd heard about it. In His service, Dale nancygar100 wrote: >-Are they doing any if FL? It would be interesting to know where they >are doing awareness booths. > > Quote Link to comment Share on other sites More sharing options...
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