Guest guest Posted January 20, 2003 Report Share Posted January 20, 2003 Dale, Thank you for your continued prayers for Sis. I haven't had much time to check messages. I did see that your " baby " was sick. I'll pray for her tonight. Wednesday is the test MRA/MRV to look at the individual blood vessels in her brain. The neuro said he didn't think he'd have the results Wednesday, but he would try. A friend of mine said in that test they will be able to tell for sure whether she was having strokes or not. Her nose started gushing blood earlier. I put a call in, but no call back. It did stop after about thirty min. So there's little signs that her pressure is building back up. I pray the best for yall. Thank you again. Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2003 Report Share Posted March 2, 2003 Dale, thanks for the concern. I will definitely keep this in mind... and keep your information in my file to check back on -- in my next appointment. I am not sure what the injections are but - the doctor that suggested that we may use them is very young.... and they are the two head doctors at the Children's Cancer Center at U of M.... by saying that I just mean that - well --- she's not outdated in her learning thats one thing but she may be working under someone who is. I will check this out. I know that we have to push --- my regular pediatrician didn't even believe that anything was wrong with Journey -- except I kept taking her in... he thought that I was insane. Till he checked her blood work again, a second time. Thank you for your concern, Mom to Journey Igg subclass deficit > > , I am a little concerned about your doctor talking about injections. > Here's why. 20 years ago -- that was the only treatment for immune > deficiencies -- muscular injections of IgG. They are EXTREMELY PAINFUL and > the dosage is too small to do any good. No one with an immune deficiency > should be using these. They are occasionally used if a " normal " person has > been exposed to nasty stuff and they want to boost the IgG with a small dose. > But, ABSOLUTELY DO NOT AGREE to these muscular injections of IgG under any > circumstances for Journey!!!!!! > > If, indeed, what your doctor recommended was possible muscular injections of > gammaglobulin, then you have to also question everything else he told you > because he's obviously WAY OUT OF DATE!!!!!! > > I highly recommend that you call and ask him what these muscular injections > would be. If he says gammaglobulin -- RUN!!!!!! > > I don't remember where you are located, but I'm sure someone could help you > find a reputable immunologist who is current with PID care. Or you may have > to travel quite a way once a year in order to get her optimal care. It's > worth it! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2003 Report Share Posted March 2, 2003 Dale, thanks for the concern. I will definitely keep this in mind... and keep your information in my file to check back on -- in my next appointment. I am not sure what the injections are but - the doctor that suggested that we may use them is very young.... and they are the two head doctors at the Children's Cancer Center at U of M.... by saying that I just mean that - well --- she's not outdated in her learning thats one thing but she may be working under someone who is. I will check this out. I know that we have to push --- my regular pediatrician didn't even believe that anything was wrong with Journey -- except I kept taking her in... he thought that I was insane. Till he checked her blood work again, a second time. Thank you for your concern, Mom to Journey Igg subclass deficit > > , I am a little concerned about your doctor talking about injections. > Here's why. 20 years ago -- that was the only treatment for immune > deficiencies -- muscular injections of IgG. They are EXTREMELY PAINFUL and > the dosage is too small to do any good. No one with an immune deficiency > should be using these. They are occasionally used if a " normal " person has > been exposed to nasty stuff and they want to boost the IgG with a small dose. > But, ABSOLUTELY DO NOT AGREE to these muscular injections of IgG under any > circumstances for Journey!!!!!! > > If, indeed, what your doctor recommended was possible muscular injections of > gammaglobulin, then you have to also question everything else he told you > because he's obviously WAY OUT OF DATE!!!!!! > > I highly recommend that you call and ask him what these muscular injections > would be. If he says gammaglobulin -- RUN!!!!!! > > I don't remember where you are located, but I'm sure someone could help you > find a reputable immunologist who is current with PID care. Or you may have > to travel quite a way once a year in order to get her optimal care. It's > worth it! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2003 Report Share Posted March 17, 2003 Dale, I'm so sorry to hear about Katy's news. It really saddens me when doctors don't want to treat people when they obviously need the help. Of course, Katy downplaying her illnesses doesn't help, but I would think that a doctor with experience could read those test results and ask appropriate questions to read between the lines. I'm so thrilled to hear about the engagement! You must be excited! Wish the happy couple good luck from me. Hope it gets better for you soon. Ray, mother to Tabitha (age 7), Autumn, age 5 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan (22 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2003 Report Share Posted March 17, 2003 Dale, Just a thought. My daughter is like Katy to some extent and will not verbalize to the doctor how she feels. It got so bad , that during her 1st infusion she was telling me that her head hurt very badly and could barely stand it. When the nurse came in and asked her how she felt, replied , ok I guess. Well the nurse took that to mean just exactly what she said " ok " , and off she went, no problem. I found the nurse, pulled her aside and explained to her that does NOT communicate her complaints very well when asked. is ALWAYS putting other peoples feelings before her own, TO A FAULT. The nurse wisely replied, " Oh she is one of those " . It amazed me how quickly her nurse changed gears, and could get to converse about things including when she began feeling ill. Her nurse told me to make sure that never goes into nursing, because most nurses have the same personality. Maybe if you called the doc and asked to speak to him and explained to him Katy's personality , and tell him how she really feels , maybe he would dig deeper, and next time make an effort to read between the lines. just my .02 cents Praying for answers Sharon Mom to 11 Igg def healthy college student 20, wife to Ken of 22 years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2003 Report Share Posted March 30, 2003 Saturday morning I got to speak to a Nursing Continuing Education symposium at Stanford on administration of IVIG (3 minutes out of the 6 hours!) But, I got to speak on behalf of children getting IVIG. Dale, How did it go? Was there a good turn out? Thanks for speaking out for our kids. le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2003 Report Share Posted March 30, 2003 Dale - please do not feel bad about thinking you made a mistake about the injections. The question did involve IgG and not PEG-ADA. PEG-ADA is a synthetic enzyme that replaces the ADA that is missing from the immune system and thus causes the SCID. It is a treatment prescribed after a great deal of lab testing and is an alternative for BMT for SCID-ADA patients. It not only helps these patients it is what saves their lives. So it would not be recommended lightly but as an alternative to BMT. We have no SCID-ADA patients on the list and only one SCID family at all (x-linked). I hope Katy's yeast infection resolves soon and I'm glad to hear that she is feeling better (or at least 50% better). Ursula Holleman mom to (10 yrs old) and Macey (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation's 2003 National Conference http://www.execinc.com/idf/ 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 March 30, 2003 Report Share Posted March 30, 2003 le, Please thank for me. I read his letter in total and the nurses got really big grins on their faces and they commented that he sounded like an incredible young man. I assured them that he is! -- what a phenomenally good writer you are. I've followed your work for several years and I just continue to become more and more impressed. There were 20 something nurses there and a handful of patients who were just observing. The immunologist who spoke was Dale Umetsu, and immunologist from Stanford. He seemed to be a very caring physician and very understanding of the impact chronic illness makes on the family. Then, the seminar on IVIG was hysterically simplified and badly explained. But.... Then the seminar on PICC lines and ports and all was not my cup of tea, but the nurses came to hear about that stuff. The patient panel was really basic -- We each got a few seconds to talk and then to answer questions. Really, no new material was covered that I haven't heard on Pedpid -- except the intra muscular injections that are used for some types of SCID. I also learned that SubQ has passed clinical trials and is available to any physician who is willing to prescribe it. Sure would cut down on your trips back and forth?????? I'm hoping Katy will change over soon. I have another project for if he's interested. I met a young lady who has a 6 year old son with CVID. If wants to let me know when his next IVIG is -- I think this little guy would really benefit from meeting a big strong guy doing the same IV stuff! They live here locally. I didn't mention it to her -- so if doesn't want to do it, that's fine. Gotta get to bed -- my typing is getting atrocious! In His service, Dale le wrote: > > Saturday morning I got to speak to a Nursing Continuing Education > symposium at > Stanford on administration of IVIG (3 minutes out of the 6 hours!) > But, I got > to speak on behalf of children getting IVIG. > > Dale, > > How did it go? Was there a good turn out? Thanks for speaking out for our kids. > > le > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 In a message dated 4/6/03 4:27:58 PM Pacific Daylight Time, dale@... writes: > I know, for us, Katy doesn't deal with life-threatening illness. She dealt > with life-impairing issues -- like fatigue and headache and body aches and > always going from one little infection to another -- always sick, Dale, This sounds like . What were Katy's IgG numbers before you started to treat with IVIG? is tired (could also be his heart) but also starting to get body and joint aches, also stomach aches. Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2003 Report Share Posted August 20, 2003 from Dale, Mom to Katy, CVID, age 19 Oh, Dayna, that sounds like a parent's worst nightmare. It also reminds me of what Lynne is going through with Sis. Sounds like you two need to compare notes. Then, I'm wondering about migraine headaches -- maybe the " urp " was just a coincidence. I'm praying that your doctors will continue to fight on her behalf and find some answers or that it will " go away " for good.. But I'm also praying for your peace and comfort and strength during this hard time. In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2003 Report Share Posted August 26, 2003 From: Beth, Mom to Wade,16(CVID,etc) Hi Dale, We 've dealt with this type of reaction occasionally & found the things that worked for Wade were warm moist compresses on the area for several hours or even overnight, accompanied by tylenol or ibuprofen, which ever she uses regularly for mild to moderate pain. If it is NOT cellulitis, these measures will help & the reaction will usually be all but gone in 24 - 48 hours. If her arm is still sore, pink, throbbing or more pale in color than usual by this afternoon, I would have someone look at it or at least call. Hope Katy is feeling better today! Glad to hear you guys had a great summer! How's ? When is he tying the knot?Please say " HI " to Katy, & from me. Love & Hugs, Beth >From: Dale Weatherford <dale@...> >Reply- > >Subject: Hi from Dale >Date: Mon, 25 Aug 2003 18:13:53 -0700 > >from Dale, Mom to Katy, CVID, age 19 > >Question: Katy asked me at dinner to ask my " experts " on Pedpid -- so >here goes. She had her IVIG yesterday and her whole arm is sore today >-- specifically up the vein that they used near her wrist all the way to >above her elbow. Could this be vasculitis? What do we do about it? > Should we yell -- or just endure? Has anyone else had this >complication? >Katy wants to know!!!! > >I take her back to school on Thursday -- I'm really going to miss her, >it's been a good summer. > >In His service, >Dale > _________________________________________________________________ Get MSN 8 and help protect your children with advanced parental controls. http://join.msn.com/?page=features/parental Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 In a message dated 9/8/03 9:05:29 PM Pacific Daylight Time, dale@... writes: > I have > an appointment with Rheumatology on October 14th. Hi Dale, I'll be praying for you. For a Rheumy, you got in fast!!! Here in Portland, if you are not an established patient, it takes about three months!! I'm so glad you don't have to wait that long. Sandi Quote Link to comment Share on other sites More sharing options...
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