Guest guest Posted November 29, 1999 Report Share Posted November 29, 1999 shari dodd wrote: > I felt good this evening and then read the list telling me how bad > alpha interferon is for me. For the last 11 months I have had a near > normal life because of this drug.Fondly, Shari Dodd > > Hi Shari, > > I don't think anyone here is against the oral interferon treatment. I > was just wondering how many folks have been tested and know where they > are at? Yours might have very well tested LOW and not high if tested > before you started treatment and thats why it works so well for you > (and many others). Thats what I would like to see is less treatments > without some kind of testing lst to see who would benefit from each > treatment. It always boils down to dollars and cents tho, our ins. > companies won't do any more than they HAVE to and most of us can't > work so can't afford to pay it ourselves. There might be many more > people out there who are candidates for interferon treatment and don't > know it. > > I hope you stay on the list with us Shari, we need all the input we > can get!!!!! > > Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 Thanks for asking. I really really liked him. He had several students (3) with him during the evaluation. He has labeled him as Non-Responsive Polysaccaride Antibody Deficiency with Hypogammaglobulinemia. His lab results came back with his IGG low (as usual) 406 (range 528-2190) and his IGM is low (which comes in and out of range) 38.9 (range 48-226). We just did post immunization blood work on Tuesday and shipped it. We should have those results in 2 to 3 weeks. He also put him on amoxicillin 250 mg 2x daily + Zyrtec and increased his Singulair. He did say depending on the lab results, he may qualify for a subQ study with gamma. for about 6 months. He would discontinue in March and retest in July. I told him I'd heard many good things about him from you. Shari Singleton NCQA Project Manager Director, Regulatory Affairs (918) 459-1298 > Shari > > Shari - how was the appointment with Terry Harville? > > Ursula > > > > > This forum is open to parents and caregivers of children diagnosed with a > Primary Immune Deficiency. Opinions or medical advice stated here are the > sole responsibility of the poster and should not be taken as professional > advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 He's such a sweet person. Good luck and I hope that the values come back soon so you'll know what to do about the subQ. Let us know. Is he running the subQ study or someone else? Ursula Holleman Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Sensory Integration Disorder, Diabetes Insipidus, colonic inertia) http://maceyh.home.att.net / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2002 Report Share Posted July 20, 2002 I have to jump in here..... Did you not just feel as if Dr. Harville had absolutely NOTHING else to do except sit down and really talk and really listen to you and your concerns. Sam has been seen by him twice now. Both times you would have thought that he had scheduled his entire day around our visit. There was absolutely no sense of how busy he must be in his position or any vestige of hurriedness in his exam of . The man is just impressive. Wenoka (AMY - 7, Sam - 5 1/2 - Hyper IgM, Christi - 20 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 I don't know if it's his subQ study or not. He just said " we " have a subQ study. I'll let you know. I expect to hear something in the next couple of weeks about a follow up appointment. Shari Singleton NCQA Project Manager Director, Regulatory Affairs (918) 459-1298 > Re: Shari > > > > He's such a sweet person. Good luck and I hope that the values come back > soon so you'll know what to do about the subQ. > Let us know. Is he running the subQ study or someone else? > > Ursula Holleman > Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Sensory > Integration Disorder, Diabetes Insipidus, colonic > inertia) > http://maceyh.home.att.net > > / > > > > This forum is open to parents and caregivers of children diagnosed with a > Primary Immune Deficiency. Opinions or medical advice stated here are the > sole responsibility of the poster and should not be taken as professional > advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 I don't know if it's his subQ study or not. He just said " we " have a subQ study. I'll let you know. I expect to hear something in the next couple of weeks about a follow up appointment. Shari Singleton NCQA Project Manager Director, Regulatory Affairs (918) 459-1298 > Re: Shari > > > > He's such a sweet person. Good luck and I hope that the values come back > soon so you'll know what to do about the subQ. > Let us know. Is he running the subQ study or someone else? > > Ursula Holleman > Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Sensory > Integration Disorder, Diabetes Insipidus, colonic > inertia) > http://maceyh.home.att.net > > / > > > > This forum is open to parents and caregivers of children diagnosed with a > Primary Immune Deficiency. Opinions or medical advice stated here are the > sole responsibility of the poster and should not be taken as professional > advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 & Wenoka: he did seem to have all the time in the world, which is so unusual. Also, when we returned from vacation, he had sent us a copy of a letter to our pediatrician which was dated the same day as our appointment and it was 3 1/2 typed pages! We saw Dr. Cunningham-Rundles in NYC last August, and her communication was not as detailed as his. Do you guys live in Arkansas or close by? We're in Tulsa, and I found the drive well worth it! Shari Singleton NCQA Project Manager Director, Regulatory Affairs (918) 459-1298 > RE: Shari > > I have to jump in here..... > > Did you not just feel as if Dr. Harville had absolutely NOTHING else to do > except sit down and really talk and really listen to you and your > concerns. > > Sam has been seen by him twice now. Both times you would have thought > that > he had scheduled his entire day around our visit. There was absolutely no > sense of how busy he must be in his position or any vestige of hurriedness > in his exam of . > > The man is just impressive. > > Wenoka (AMY - 7, Sam - 5 1/2 - Hyper IgM, Christi - 20 months) > > > > This forum is open to parents and caregivers of children diagnosed with a > Primary Immune Deficiency. Opinions or medical advice stated here are the > sole responsibility of the poster and should not be taken as professional > advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 & Wenoka: he did seem to have all the time in the world, which is so unusual. Also, when we returned from vacation, he had sent us a copy of a letter to our pediatrician which was dated the same day as our appointment and it was 3 1/2 typed pages! We saw Dr. Cunningham-Rundles in NYC last August, and her communication was not as detailed as his. Do you guys live in Arkansas or close by? We're in Tulsa, and I found the drive well worth it! Shari Singleton NCQA Project Manager Director, Regulatory Affairs (918) 459-1298 > RE: Shari > > I have to jump in here..... > > Did you not just feel as if Dr. Harville had absolutely NOTHING else to do > except sit down and really talk and really listen to you and your > concerns. > > Sam has been seen by him twice now. Both times you would have thought > that > he had scheduled his entire day around our visit. There was absolutely no > sense of how busy he must be in his position or any vestige of hurriedness > in his exam of . > > The man is just impressive. > > Wenoka (AMY - 7, Sam - 5 1/2 - Hyper IgM, Christi - 20 months) > > > > This forum is open to parents and caregivers of children diagnosed with a > Primary Immune Deficiency. Opinions or medical advice stated here are the > sole responsibility of the poster and should not be taken as professional > advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 We're about an hour NE in Arkansas. Ark. Children's is where has always received his treatments, and I cannot say enough good things about them. Wenoka Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2003 Report Share Posted March 23, 2003 Hi Shari. I have found puberty to be a very difficult time for my 12 year old son diagnosed with Asperger's. As far as the dentist, I would recommend talking with other parents of children with special needs or calling your local Autism society for recommendations. Also, some universities with dental programs offer reduced rates for cleaning. You could consult with them and tell them about your daughter's sensitivies and perhaps they could accomodate her. Here are a couple of articles for you to check out: Pam <A HREF= " http://www.aspennj.org/baker2.html " >Alphabet Soup? AS/ADHD</A> <A HREF= " http://home.ptd.net/~blnelson/SIDWEBPAGE2.htm " >Sensory Integration Dysfunction - </A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2003 Report Share Posted March 23, 2003 While its a great idea to take advantage of dental students, I would think twice about it with as kids. The air base works with the local vocational school here so we were asked to take part in their program. I found that the cleaning was very painful compared to cleaning done by licensed hygiene. Also it took much longer since after every skill they did, their teacher had to come in go over what had been done and in some cases do it over again to show the student what they didn't do correctly. Barbara ppanda65@... wrote: Hi Shari. I have found puberty to be a very difficult time for my 12 year old son diagnosed with Asperger's. As far as the dentist, I would recommend talking with other parents of children with special needs or calling your local Autism society for recommendations. Also, some universities with dental programs offer reduced rates for cleaning. You could consult with them and tell them about your daughter's sensitivies and perhaps they could accomodate her. Here are a couple of articles for you to check out: Pam <A HREF= " http://www.aspennj.org/baker2.html " >Alphabet Soup? AS/ADHD</A> <A HREF= " http://home.ptd.net/~blnelson/SIDWEBPAGE2.htm " >Sensory Integration Dysfunction - </A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2006 Report Share Posted October 4, 2006 Shari, Thanks for sharing this poem, brought tears to my eyes. I may email to her tomorrow, I am still thinking about that..... Caroline Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 Shari I could never imagine my child sick from my own implants. Logan is handsome, has a wonderful loving mom and a blessed future ahead. God Bless, Sandy~ Hi girlsFor those who know me here know my little one Logan and the turmoil I went thru with him as a toddler with all the "silicone" issues as I breast fed him w/ salines w/ silicone shells that shed and he had all kinds of illnesses as a baby and small child ranging from constant fever, seizures, unexplained infections, mold exposure, hives, rashes,etc. It was horrible but I am so happy to say he has been incredibly healthy the last three and a half years - grown big and strong and willbe 7 in June. I am so relieved and am hoping it all worked it's way outand he will not have anymore issues... I can only pray... I am so thankful is is normal now and so healthy. I am blessed.Anyways - for anyone who may be interested in a few smiles....As I mentioned a few weeks back, he models and such now and just filmed a commercial a few months back which is just starting to air. It is pretty cute - I have put a link to it if anyon e would like to take a look for a laugh... he is in the "fishing" one for the Toronto Bluejays, as Hill at age 7. It is funny - on a 30 second spot although there are two others after it that were filmed the same week for other players - his is the first one the little blonde fishing.ogan's Toronto Blue Jays' commercial is airing now in Canada... I have *********************************************************************It isn't on the Toronto site yet but it has been posted on youtube...I found it this morning...Logan's is the first one they show. It is pretty funny...Go to - cut and paste it to your browser...http://www.youtube.com/watch?v=fROQhNrzJ7kShari Halverson Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2010 Report Share Posted October 10, 2010 Hi Shari I will be thinking about you on your activation date, i guess being second time round you know what to expect,Having my third mapping tmrw already using max volume again so im sure its due, Been having a few Ci moment, driving home from friends tonight hear funny sound in car the i realised that it was the keys in the ignition jingling around and i can now hear if it raining outside, cool and im sure there will be many more to come, but in general it seams to be complimeting my hearing aid in the other ear quiet well at the moment, heading back to work tmrw , should be interesting to see how i cope, Glad to hear most of your soreness has gone, did you lose your taste at all, some things still taste funny for me on the right side of my tounge but it is getting better, Ive been using the small batteries for the nuke 5 at the moment and have been getting about 14 hrs out of them so far which is enough for me, I must say I have been good and wearing it all day and two hours of practice each day, mostly with just listening to the tv with implant only and following the subtitles. Neil From: Shari <skedi1@...> Subject: (unknown) Received: Friday, 8 October, 2010, 4:31 AM Â Hi Neil. Â I remember from my first activation how the initial " noise " sounded like. That ear did not get any real speech in that ear for about 15 years. That said, it took time for the brain to adjust and recognize those sounds again. I had a second mapping two weeks after the activation and when I was tested, I was so surprised that I was hearing words and sentences or parts of sentences. I really didn't think I would do as well as I thought I did. Â I wore it all day, letting the sounds in. practicing. I remember how putting it on, it didn't hurt but in a few hours, it weighed down on the tip of my ear. It hurt to lift it off and the audi ut some moleskin on the ear hook, on the underside of it where it would touch the top of the ear. What a difference that made. It was a lot heavier and bigger than a hearing aid. I still put on a strip of moleskin on it, peeling it off, cleaning it, and putting a fresh one on. Â It is true that the CI is more successful for those who had hearing before losing it. Also, some people get a CI within months, depending on insurance approval and/or the time spent deciding on an CI and then getting the CI are more successful at hearing things a lot quicker. Â I'm so glad the CI is working for you. I've got another week till activation yet. Â I am healing well. The incision is healed. I am not stiff in the neck area anymore. The only " jaw pain " I have is when I yawn (on the side of the new implant). It's still a little sore that way, but I have no toothache feeling anymore. I can still feel that it is a bit swollen around the magnet and I remember that from the last time, too. Â Take Care, Shari in WI Â Â Quote Link to comment Share on other sites More sharing options...
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