Guest guest Posted May 31, 1999 Report Share Posted May 31, 1999 Dear Michele, I will add Gavin to my daily prayers and will ask others to do so as well. I recently heard a presentation on Di syndrome and know how serious a problem you are having to deal with right now. I will keep you and yours in my thoughts. Autumn mom to Mark Cd5-Cd19 PID/ GERD, A1A, Samter's syndrome Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 1999 Report Share Posted June 7, 1999 Dear Amber: I hope that Kelsey's IVIG treatment goes well tomorrow. My daughter is a little bit better with each treatment about recieving the needle. Have a good week and hope you have no aftermath from the IVIG. We finally get to see our imunologist friday and we have like four pages of questions for him. All from what we have learned on the website. Thanks again. annette mom to alissa cvid,asthmatic > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: (no subject) >Date: Sun, 06 Jun 1999 20:04:13 -0700 > > > >Hi, > Well kelsey has her 4th IVIH treatment tomorrow at 9. I am going to >premedicate with the benadryl and advil and hopefully she wont get the >headache, vomiting and temp flucuations. I told her she had to go for >her needle tomorrow and she took it just fine. It seems that every time >becomes a bit less traumatic for her. I keep waiting for the treatments >to start working and she can have a normal life again. we were told 6-8 >treatments so we are almost there. >Amber mom to kelsey 3 1/2 selective def,and keira 14 months selective >def, GERD > >------------------------------------------------------------------------ >Got an opinion? >http://www.onelist.com >Make it count! Sign up for the ONElist Weekly Survey now. >------------------------------------------------------------------------ >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. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 1999 Report Share Posted June 7, 1999 Dear Amber: I hope that Kelsey's IVIG treatment goes well tomorrow. My daughter is a little bit better with each treatment about recieving the needle. Have a good week and hope you have no aftermath from the IVIG. We finally get to see our imunologist friday and we have like four pages of questions for him. All from what we have learned on the website. Thanks again. annette mom to alissa cvid,asthmatic > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: (no subject) >Date: Sun, 06 Jun 1999 20:04:13 -0700 > > > >Hi, > Well kelsey has her 4th IVIH treatment tomorrow at 9. I am going to >premedicate with the benadryl and advil and hopefully she wont get the >headache, vomiting and temp flucuations. I told her she had to go for >her needle tomorrow and she took it just fine. It seems that every time >becomes a bit less traumatic for her. I keep waiting for the treatments >to start working and she can have a normal life again. we were told 6-8 >treatments so we are almost there. >Amber mom to kelsey 3 1/2 selective def,and keira 14 months selective >def, GERD > >------------------------------------------------------------------------ >Got an opinion? >http://www.onelist.com >Make it count! Sign up for the ONElist Weekly Survey now. >------------------------------------------------------------------------ >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. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 1999 Report Share Posted June 8, 1999 Amber, Have a fun, safe, happy and HEALTHY vacation! Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD, chronic sinusitis, IVIG, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 1999 Report Share Posted June 8, 1999 Amber, Have a fun, safe, happy and HEALTHY vacation! Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD, chronic sinusitis, IVIG, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 1999 Report Share Posted June 20, 1999 Dear Annette: Thank you for the info you gave me, I really appreciate your help. I have been in touch with another mom who's daughter also has hyper ige syndrome. She suggested that we go to NIH where they have studied 70 people with this disorder. I was very excited because they had published their research in the New England Journal of Medicine. The more I talked with her the more upset I became. She didn't even know what IVIG was. She also thought that diflucan was a medical miracle. I've known about this for years. I just feel like a terrible mom. I don't want to put him through any more trauma. I try my hardest to make sure what is being done is only if it is necessary. They used so many things on him when he was a baby(that was before I realized they had no idea what to do for him and I also trusted them) It is so hard to know what to do. I'm really afraid of starting all over and trusting someone to have his best interests at heart as I do. Nothing seems to work for him. I'm sorry to lay this on you, but at the same time I'm sure you have probably been there. I've looked for a long time trying to find other parents who understand what we are going through, but now that I've found you guys I really feel afraid to let anyone in. I guess I'm just really tired, emotionally. You know? Of course you do! Thanks for listening. Hugs and kisses for Alissa. Sheble (Tyler's Mom) annette lennon wrote: > Dear , How are you? Have not heard back from you. Did you get in touch with Dr. Manning or did you find a pediatrician you and your husband like? Please let us know. > regards, > annette and bob lennon parents of alissa > cvid,asthmatic > > ______________________________________________________ > www.eCircles.com - Stay in the loop > http://www.ecircles.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 1999 Report Share Posted June 20, 1999 Dear Annette: Thank you for the info you gave me, I really appreciate your help. I have been in touch with another mom who's daughter also has hyper ige syndrome. She suggested that we go to NIH where they have studied 70 people with this disorder. I was very excited because they had published their research in the New England Journal of Medicine. The more I talked with her the more upset I became. She didn't even know what IVIG was. She also thought that diflucan was a medical miracle. I've known about this for years. I just feel like a terrible mom. I don't want to put him through any more trauma. I try my hardest to make sure what is being done is only if it is necessary. They used so many things on him when he was a baby(that was before I realized they had no idea what to do for him and I also trusted them) It is so hard to know what to do. I'm really afraid of starting all over and trusting someone to have his best interests at heart as I do. Nothing seems to work for him. I'm sorry to lay this on you, but at the same time I'm sure you have probably been there. I've looked for a long time trying to find other parents who understand what we are going through, but now that I've found you guys I really feel afraid to let anyone in. I guess I'm just really tired, emotionally. You know? Of course you do! Thanks for listening. Hugs and kisses for Alissa. Sheble (Tyler's Mom) annette lennon wrote: > Dear , How are you? Have not heard back from you. Did you get in touch with Dr. Manning or did you find a pediatrician you and your husband like? Please let us know. > regards, > annette and bob lennon parents of alissa > cvid,asthmatic > > ______________________________________________________ > www.eCircles.com - Stay in the loop > http://www.ecircles.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 1999 Report Share Posted June 20, 1999 Dear Annette: Thank you for the info you gave me, I really appreciate your help. I have been in touch with another mom who's daughter also has hyper ige syndrome. She suggested that we go to NIH where they have studied 70 people with this disorder. I was very excited because they had published their research in the New England Journal of Medicine. The more I talked with her the more upset I became. She didn't even know what IVIG was. She also thought that diflucan was a medical miracle. I've known about this for years. I just feel like a terrible mom. I don't want to put him through any more trauma. I try my hardest to make sure what is being done is only if it is necessary. They used so many things on him when he was a baby(that was before I realized they had no idea what to do for him and I also trusted them) It is so hard to know what to do. I'm really afraid of starting all over and trusting someone to have his best interests at heart as I do. Nothing seems to work for him. I'm sorry to lay this on you, but at the same time I'm sure you have probably been there. I've looked for a long time trying to find other parents who understand what we are going through, but now that I've found you guys I really feel afraid to let anyone in. I guess I'm just really tired, emotionally. You know? Of course you do! Thanks for listening. Hugs and kisses for Alissa. Sheble (Tyler's Mom) annette lennon wrote: > Dear , How are you? Have not heard back from you. Did you get in touch with Dr. Manning or did you find a pediatrician you and your husband like? Please let us know. > regards, > annette and bob lennon parents of alissa > cvid,asthmatic > > ______________________________________________________ > www.eCircles.com - Stay in the loop > http://www.ecircles.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 Amber, My son Mark gets thrush from time to time. Usually on the back of his throat and/or tongue. His tongue gets a very thick white coating on it. I usually have it confirmed by a doctor before treating it,....it kind of sounds like thrush to me. Autumn mom to Mark Cd5-Cd19 PID/ GERD, A1A, Samter's syndrome Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 1999 Report Share Posted July 1, 1999 Dear , Glad they made the decision on the mediport. Please let me know how it goes and we will probably follow. Especially when they place it. How much activity must you limit. Have a good holiday and hope the kids get to watch some neat fireworks. In our prayers. annette mom to alissa cvid,asthmatic > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: Re: " the call " >Date: Thu, 1 Jul 1999 08:08:28 -0400 > > > >Hi Ursula, >Glad to hear that things are coming about and getting solved with Macey. >Yes we have decided to definitely get the port. It is just a matter of >getting the rash he has cleared. And the Ped. Surgeon doing it has alot of >experience. He is a wonderful doctor. his name is Doctor Howell, and he >works up at MCG. > >I will let you know when it happens. > >, wife to Preston, mother to Shelbie 8, Mandy 3 and 13 months >Moderator of Military EFMs, IVH-Hydrocephalus and NICU Families >Registered Chat for Preemies Friends and Family. > >For as the body is one and has many members, >but all the members of that one body, >being many, are one body, >so also is Christ. >1 Corinthians 12:12 > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2000 Report Share Posted July 28, 2000 Hi there and welcome. I took a quick peek at your website and it looks really nice. I can't wait until I have time to really explore it. I am about 500 e-mails behind now, but I hope I get through them quickly. --- sderka1@... wrote: > Hello. > > I am new here. I am , the mother of two > learning disabled > children. I am also a child / parent advocate. I run > an online > support group called KidsHeart (onelist), as well as > have a web page > by the same name. > > I believe in trying to educate people who are new to > the learning > disability world. Together I believe we all can help > and support each > other. > > I look forward to getting to know you all. > ~~ > KidsHeart ~ www.geocities.com/KIDSHEART2000 ~ > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2000 Report Share Posted July 28, 2000 Hi there and welcome. I took a quick peek at your website and it looks really nice. I can't wait until I have time to really explore it. I am about 500 e-mails behind now, but I hope I get through them quickly. --- sderka1@... wrote: > Hello. > > I am new here. I am , the mother of two > learning disabled > children. I am also a child / parent advocate. I run > an online > support group called KidsHeart (onelist), as well as > have a web page > by the same name. > > I believe in trying to educate people who are new to > the learning > disability world. Together I believe we all can help > and support each > other. > > I look forward to getting to know you all. > ~~ > KidsHeart ~ www.geocities.com/KIDSHEART2000 ~ > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2000 Report Share Posted July 28, 2000 Hi there and welcome. I took a quick peek at your website and it looks really nice. I can't wait until I have time to really explore it. I am about 500 e-mails behind now, but I hope I get through them quickly. --- sderka1@... wrote: > Hello. > > I am new here. I am , the mother of two > learning disabled > children. I am also a child / parent advocate. I run > an online > support group called KidsHeart (onelist), as well as > have a web page > by the same name. > > I believe in trying to educate people who are new to > the learning > disability world. Together I believe we all can help > and support each > other. > > I look forward to getting to know you all. > ~~ > KidsHeart ~ www.geocities.com/KIDSHEART2000 ~ > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2001 Report Share Posted June 1, 2001 Kim - Interesting point you make about Garett deciding himself when to start using the toilet. Our son is like that, and I've always assumed it to be an Aspergers trait (rules having their most meaning when they come from within the Aspie). Once he fixes on a rule, he's adamant about it being essential to his belief structure. Also, he had an interesting approach to acquiring skills (like toilet training). In virtually all benchmarks, he was the first of the twins to try something and the last to do it regularly. Crawling is a good example - He started crawling - really crawling, not just directional squirming, fairly early. He did that for about a week, then before our daughter started, he quit. She started crawling, he just laid there. It was probably a good 4-6 weeks where he just waited. She developed her skills and got good at it; he just laid there (and *I* think, thought about it, practicing in his mind), until one day, he decided " Ok - I can be good at this. Time to start again! " At which point, though she'd been crawling for 6-8 weeks, and he'd only done it for a week, some time back, he was just as good as her. I can relate to that - I used to practice typing in my head - just imagined myself moving my fingers to the right places. It helped my typing a great deal. I'm sure there are other examples I'm not going to think of tonight. Anyway, your comment just rang some bells for me. _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2011 Report Share Posted May 28, 2011 ..Have only powerful erection! http://thielmarketing.spacequadrat.de/page.php?fyphotmailID=97tj5 Quote Link to comment Share on other sites More sharing options...
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