Guest guest Posted June 5, 2001 Report Share Posted June 5, 2001 Hi Tracey- Welcome! You've come to the right place. This was the first list I joined when I got my computer a couple of months ago and it's still my favorite. These people are a wealth of information and very supportive! My daughter Bridget is 5 and we're from Oregon. She'll be going to Kindergarten next year. I look forward to chatting with you. Deanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2001 Report Share Posted July 28, 2001 Sara - welcome to the group. My name is Ursula and I have a 6 yr old daughter Macey, who has CVID. She stopped infusions last year and so far has done very well. She has several other diagnosis which tend to complicate the situation and right now her GI system is our biggest culprit. She has an older sister who is 8 and in very good health (apart from getting allergy shots). I wasn't aware that Dr. Cunningham-Rundles saw children. Have you been to see a local pediatric immunologist? What immune testing has been done so far? I would be interested to hear how Dr. CCR looks at children diagnosed this young and what precautions and treatments she recommends. Please update us when you return. Congratulations on the Kansas Chapter-in- formation. We have been trying to get a Georgia chapter started for 2 yrs now but has put it on hold. Please know that we are all here to support each other and share information. There are a wide variety of immune deficiencies represented on the list and different physician treatments tend to clash, but hey that's more information and options for us so knowledge is power. Glad to have you find our group. -- Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ http://groups.yahoo.com/group/PedPI D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2001 Report Share Posted July 28, 2001 Sara - welcome to the group. My name is Ursula and I have a 6 yr old daughter Macey, who has CVID. She stopped infusions last year and so far has done very well. She has several other diagnosis which tend to complicate the situation and right now her GI system is our biggest culprit. She has an older sister who is 8 and in very good health (apart from getting allergy shots). I wasn't aware that Dr. Cunningham-Rundles saw children. Have you been to see a local pediatric immunologist? What immune testing has been done so far? I would be interested to hear how Dr. CCR looks at children diagnosed this young and what precautions and treatments she recommends. Please update us when you return. Congratulations on the Kansas Chapter-in- formation. We have been trying to get a Georgia chapter started for 2 yrs now but has put it on hold. Please know that we are all here to support each other and share information. There are a wide variety of immune deficiencies represented on the list and different physician treatments tend to clash, but hey that's more information and options for us so knowledge is power. Glad to have you find our group. -- Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ http://groups.yahoo.com/group/PedPI D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2001 Report Share Posted July 29, 2001 Hi I am a new member also my name is . My son ie has CVID-and has been undergoing infusions for one year now we are hoping to be able to spread them out now because his counts have been pretty good. THanks for the info on the new cream Im going to try it ie is quite shell shocked from all the sticks he gets. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2001 Report Share Posted September 1, 2001 , My daughter Autumn is classified as moderate to severe asthma. She's allergic to dust, cladisporium mold, mesquite trees & tumble weeds (Russian thistle). These things are all VERY prevalent in West Texas. Autumn is IgG deficient, so I'm no help with the Hyper IgE. We have Autumn on Pulmicort through a nebulizer two times per day. She uses albuterol & atrovent as needed. Right now we've been dealing with the same asthma attack for going on a week now. Just when I think we've got it licked, it comes right back. She was diagnosed on Monday afternoon with 2 ear infections, so I suspect the antibiotics aren't working. I'm checking on her through the night & probably calling the ped tomorrow. Ray, mother to Tabitha (age 6), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery, 3 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2001 Report Share Posted September 1, 2001 , My daughter Autumn is classified as moderate to severe asthma. She's allergic to dust, cladisporium mold, mesquite trees & tumble weeds (Russian thistle). These things are all VERY prevalent in West Texas. Autumn is IgG deficient, so I'm no help with the Hyper IgE. We have Autumn on Pulmicort through a nebulizer two times per day. She uses albuterol & atrovent as needed. Right now we've been dealing with the same asthma attack for going on a week now. Just when I think we've got it licked, it comes right back. She was diagnosed on Monday afternoon with 2 ear infections, so I suspect the antibiotics aren't working. I'm checking on her through the night & probably calling the ped tomorrow. Ray, mother to Tabitha (age 6), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery, 3 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2001 Report Share Posted September 1, 2001 , My daughter Autumn is classified as moderate to severe asthma. She's allergic to dust, cladisporium mold, mesquite trees & tumble weeds (Russian thistle). These things are all VERY prevalent in West Texas. Autumn is IgG deficient, so I'm no help with the Hyper IgE. We have Autumn on Pulmicort through a nebulizer two times per day. She uses albuterol & atrovent as needed. Right now we've been dealing with the same asthma attack for going on a week now. Just when I think we've got it licked, it comes right back. She was diagnosed on Monday afternoon with 2 ear infections, so I suspect the antibiotics aren't working. I'm checking on her through the night & probably calling the ped tomorrow. Ray, mother to Tabitha (age 6), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery, 3 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2001 Report Share Posted October 3, 2001 Patty (I think I have your name right?): There have actually been quite a few posts regarding infusion reactions. My daughter doesn't get IVIG but I've been here long enough to think 's episodes sound EXACTLY like one kind of reaction. Maybe go to the archives of the group and search for that topic...there's a lot there. Others can tell you more but I wanted to jump in right away so you'd know there may be hope for solving the problem (or at least reducing it). If he's reacting to the IgA in the product (sounds likely given his IgA deficiency), there are brands that are considered least likely to cause reactions. And all sorts of protocols for pre-medicating before infusions to reduce reactions. Again, I don't know the details because we haven't been there (yet?). (mom to , age 2-1/2, polysaccharide antibody def, IgA def) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2001 Report Share Posted October 3, 2001 Hi Patty, My daughter Chelsea used to have really bad reactions, she is now on Gamaguard and we premedicate with Zyrtec and Solumedrol, side effects have reduced a great deal. Welcome to the Group! Marlo, Mom to Britt (10), Chelsea(6) IGA, IGM def and Sinus, Ear and Mastoid disease, Reactive Airway. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2001 Report Share Posted October 3, 2001 Hi Patty, My daughter Chelsea used to have really bad reactions, she is now on Gamaguard and we premedicate with Zyrtec and Solumedrol, side effects have reduced a great deal. Welcome to the Group! Marlo, Mom to Britt (10), Chelsea(6) IGA, IGM def and Sinus, Ear and Mastoid disease, Reactive Airway. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2001 Report Share Posted November 8, 2001 Welcome a.... My Daughter Chelsea also is IGA def and has been since 8 months old she is now 6 almost 7 (In Feb). This is a wonderful group of people who can get you through many difficult times! Marlo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2001 Report Share Posted November 13, 2001 MarloDarr@... wrote: Welcome a.... My Daughter Chelsea also is IGA def and has been since 8 months old she is now 6 almost 7 (In Feb). This is a wonderful group of people who can get you through many difficult times! Marlo 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 November 13, 2001 Report Share Posted November 13, 2001 MarloDarr@... wrote: Welcome a.... My Daughter Chelsea also is IGA def and has been since 8 months old she is now 6 almost 7 (In Feb). This is a wonderful group of people who can get you through many difficult times! Marlo 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 November 13, 2001 Report Share Posted November 13, 2001 Hi a, Chelsea's main issues are of course the IGA, IGM def as well as chronic Sinus and Ear disease. Chelsea also suffers from croop very often and at 15 months old she had mastoiditis twice and underwent a mastoidectomy on the right side. Chelsea also suffers from what they believe to be Cyclic Neutopenia. Chelsea's White cells tend to drop instead of rise when she is infected which makes things real fun to try and clear up..... Chelsea has done much better since her IVIG treatments began much less inpatient stays, however lots of Antibiotics and ER visits still. What are Shauns symptoms? If I can be of any other help and you want to talk off line of the group please feel free to write me at MarloDarr@.... Where are you located? Welcome again and I hope you find the group as helpful as I have. Take care Marlo, Mom to Brittany (10) Chelsea (6) IGA< IGM def, Chronic Sinus, Ear and Mastoid disease. IVIG every 4 weeks.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2001 Report Share Posted November 13, 2001 Hi a, Chelsea's main issues are of course the IGA, IGM def as well as chronic Sinus and Ear disease. Chelsea also suffers from croop very often and at 15 months old she had mastoiditis twice and underwent a mastoidectomy on the right side. Chelsea also suffers from what they believe to be Cyclic Neutopenia. Chelsea's White cells tend to drop instead of rise when she is infected which makes things real fun to try and clear up..... Chelsea has done much better since her IVIG treatments began much less inpatient stays, however lots of Antibiotics and ER visits still. What are Shauns symptoms? If I can be of any other help and you want to talk off line of the group please feel free to write me at MarloDarr@.... Where are you located? Welcome again and I hope you find the group as helpful as I have. Take care Marlo, Mom to Brittany (10) Chelsea (6) IGA< IGM def, Chronic Sinus, Ear and Mastoid disease. IVIG every 4 weeks.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2002 Report Share Posted February 1, 2002 Hi , I'm sorta new too and my husband has stills and your case reminded me of his since it took along time to find out exactly what he has. He was never hospitalized but went to a arthritic ruematoligist and had about every test there was too along with the bone marrow test.He had a 'flare' that lasted for over 3 months before they get him on the rights meds and he finally got on enbrel and we waited awhile because you get on a waiting list. His symtoms was extreme pain ,fevers as high as 105 with inflammation of joints and with that the severe rash. He had to go on sick leave in October ans was still on arthotec and prednisone along with the methotextrate. He was doing quite well on the enbrel but 3 weeks ago took him off the mex and put him on neoral(CHLORISPINE) something like that but now he got a terrible fungus thrush infection in mouth and is spreading so much that the dr. took him off all meds so they can treat this. I as his spouse,(my name is ) have been so frustrated and I feel so helpless at times. I am so thankful for this cite. It has helped me immensely. Anywaywelcome to the group and God Bless. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2002 Report Share Posted February 1, 2002 Hi , I'm sorta new too and my husband has stills and your case reminded me of his since it took along time to find out exactly what he has. He was never hospitalized but went to a arthritic ruematoligist and had about every test there was too along with the bone marrow test.He had a 'flare' that lasted for over 3 months before they get him on the rights meds and he finally got on enbrel and we waited awhile because you get on a waiting list. His symtoms was extreme pain ,fevers as high as 105 with inflammation of joints and with that the severe rash. He had to go on sick leave in October ans was still on arthotec and prednisone along with the methotextrate. He was doing quite well on the enbrel but 3 weeks ago took him off the mex and put him on neoral(CHLORISPINE) something like that but now he got a terrible fungus thrush infection in mouth and is spreading so much that the dr. took him off all meds so they can treat this. I as his spouse,(my name is ) have been so frustrated and I feel so helpless at times. I am so thankful for this cite. It has helped me immensely. Anywaywelcome to the group and God Bless. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2002 Report Share Posted June 24, 2002 Florica, Welcome, and I will look at your website later but now I must get to the vitamin store before my son's next ABA therapist appoinment. Hope In a message dated 6/24/02 12:51:38 PM Eastern Daylight Time, tguppy@... writes: > Subj: new member > Date:6/24/02 12:51:38 PM Eastern Daylight Time > From:<A HREF= " mailto:tguppy@... " >tguppy@...</A> > Reply-to:<A HREF= " mailto:Texas-Autism-Advocacy " >Texas-Autism-Advocacy@yahoog\ roups.com</A> > To:<A HREF= " mailto:texas-autism-advocacy " >texas-autism-advocacy@yahoog\ roups.com</A> > Sent from the Internet > > > > > > new member > > > Hi all, > My name is Florica ,I have three children one of whom > is , 13 years old, has ASD . I am also the author > of 'Autism the Eighth Colour of the Rainbow, A Guide > to Loving Interaction and Shared Understanding' > > I joined you list wanting to share knowledge with > whomever wants it and also to find out the latest > developments related to ASD. > > On my website at http://hope-tlc.autistics.org you can > find out more about and myself. > > If some of you are parenting a child who finds it hard > to make sense of words, there is a linguistic > behaviour table which might provide some helpful > suggestions designed to increase a child's vocabulary > of shared meanings and confidence around people. > > http://hope-tlc.autistics.org/assess.html > > Kind Regards > Florica Stone > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 > Hi, > I have a 4 year old son with cleft lip palate, speech language delays > and recently diagnosed with PDDNOS. We live in austin tx. this is a > wonderful group. I wanted to learn more about ABA, diet therapy. also > has anybody had NACD evaluation. apparently it is anew therapy with > regional center at ARlington do you have any idea. > thanks > bharathi Hi bharathi, Here is a website that has lots of information on a wide range of issues/treatments/methods/etc. http://www.autismchannel.net/dana/ here is a map of everything on this website: http://www.autismchannel.net/dana/sitemap.htm here is some info on diet(s): http://www.autismchannel.net/dana/parent3.htm#diet this page has info on ABA (and other related therapies): http://www.autismchannel.net/dana/parent2.htm#therapies best wishes, Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 > Hi, > I have a 4 year old son with cleft lip palate, speech language delays > and recently diagnosed with PDDNOS. We live in austin tx. this is a > wonderful group. I wanted to learn more about ABA, diet therapy. also > has anybody had NACD evaluation. apparently it is anew therapy with > regional center at ARlington do you have any idea. > thanks > bharathi Hi bharathi, Here is a website that has lots of information on a wide range of issues/treatments/methods/etc. http://www.autismchannel.net/dana/ here is a map of everything on this website: http://www.autismchannel.net/dana/sitemap.htm here is some info on diet(s): http://www.autismchannel.net/dana/parent3.htm#diet this page has info on ABA (and other related therapies): http://www.autismchannel.net/dana/parent2.htm#therapies best wishes, Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 Hi Bharathi, I would like to welcome you to this very informative group. When I spoke with you yesterday I mentioned that I did not know of any DAN doctors who I would recommend in Texas to speak with you. I bet someone on this list has used a DAN doctor that they like in Texas. I heard from Dr. Amy Holmes that she is no longer taking new patients at this time. Any ideas?? Good luck " Barty " ! Trina Sherman new member Hi, I have a 4 year old son with cleft lip palate, speech language delays and recently diagnosed with PDDNOS. We live in austin tx. this is a wonderful group. I wanted to learn more about ABA, diet therapy. also has anybody had NACD evaluation. apparently it is anew therapy with regional center at ARlington do you have any idea. thanks bharathi Unlocking Autism www.UnlockingAutism.org Autism-Awareness-Action Worldwide internet group for parents who have a child with AUTISM. Schafer Autism Report News and information on Autism To Subscribe http://home.sprynet.com/~schafer/index.html Healing Autism: No Finer Cause on the Planet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 Hi Bhrathi-- A great beginner's site for ABA is www.rsaffran.tripod.com/aba two great diet sites are www.gfcfdiet.com and www.autismndi.com and of course ' Special Diets for Special Kids I & II are worth 5 times the price you pay because they save you from reinventing the wheel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 Hello Tina, I am relatively new also.We don't seem to have on line chat but it looks like people check their mail several times a day so if you need support or an answer to a question you usually get it that day, Welcome to the group, my name is Katy from the UK "tinabrat29 wrote: Hello . i am tina and my son is somewhere on the spectrum. Is there a time where there are members normally in chat. there are not close by support groups and i am looking to find other info and parents in this same situation. please reply. thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 We might be able to "chat" via instant messenger. My MSN messenger name is mljjmom@... and my aol name is mljjmommy. I am new - I have an 8 year old son who is definitely as Aspie as far as I am concerned. He is 99% of what is described socially with some of the other stuff. He wants friends, but drives the other children away with his behavior. His little brother is a kid "magnet" so kids come looking to play with him, but ignore, exclude and shun ny. I need support, insight and ANY RECOMMENDATIONS for a therapist in the Dallas/Fort Worth Texas area. Blessings!Diane Hearon -----Original Message-----From: katy wicks Sent: Friday, February 07, 2003 3:25 PMTo: autism-aspergers Subject: Re: new member Hello Tina, I am relatively new also.We don't seem to have on line chat but it looks like people check their mail several times a day so if you need support or an answer to a question you usually get it that day, Welcome to the group, my name is Katy from the UK "tinabrat29 wrote: Hello . i am tina and my son is somewhere on the spectrum. Is there a time where there are members normally in chat. there are not close by support groups and i am looking to find other info and parents in this same situation. please reply. thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 I have a question about aspergers?? Dakota was diagnosed with pddnos. Now this may be a dumb question but do all kids with aspergers have social skill problems? Do they have good eye contact? I am jsut wondering cuz sometimes I don't wonder if dakota has aspergers cuz he can be so high functioning stacie Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.