Guest guest Posted August 15, 2000 Report Share Posted August 15, 2000 Hi Kim, You and I have been corresponding by private email. This is one of the groups that I was referring to in my most recent letter to you. I hope that you find it helpful and supportive. WELCOME!!!!!! Talk to you soon~ Autumn (Mom to Mark Cd5-Cd19 PID and ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2000 Report Share Posted August 15, 2000 Dear Kim, My son has also been diagnosed with Selective Antibody Deficiency. He has been receiviv IVIG for three years now every three weeks. His # are also slightly below normal with no response to polysaccarides. Before being dignosed had 6 surgeries in two years. He would get hot joints and septic hip which led to a hip surgery. We were then sent to LPCH in Satnford where he was diagnosed. While on IVIG he does not get hot joints but when taken off for a trail they flared up. Reading your e mail sounded so much like !!! I was wondering you could expand on : She is still congested most of the time and has some gastro and urinary problems, but basically she is good. I am currently at Stanford Childrens Hospital for four day seeing Drs concerning . also has problems with bowel and bladder. Today we saw our gastro and had a procedure done. Tommorrow we see our urologist, Thursday we do biofeed back to help with bowel and bladder issues then he has his IVIG. Friday we see our nuerologist for a check up for syringomyelia (fluid in the spinal cord) is a very active 10 year old boy. HE is also constantly congested and battles with the fatigue and headaches. But he pushes thru. Kim thanks for sharing, le 10, Selective Antibody Deficincy, syringomyelia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2000 Report Share Posted August 16, 2000 Welcome Kim! My son has IgG def. 2 & 4, steroid dependent asthma, and as yet undiagnosed immune deficiency on top of the IgG def. Getting the diagnosis is a hard battle! Right now my son receives IVIG every three weeks, and he is doing much better although not as good as the immunologist had hoped. We will reevaluate the dosage again in Nov. (Kody doesn't weigh enough right now to raise the dose, making it too risky). This is a wonderful place for information and support! Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2000 Report Share Posted August 16, 2000 Kim, Hi! I am Jan, mom to Ben (CVID and other stuff) age 12 and to (asthma and allergies) age 9. We live in the Panhandle (top) of TX. When we were referred to a major medical facility 10 years ago we had a choice of Denver or Dallas. I don't remember why but we went with Dallas (maybe our ped. knew the doc better). What area are you in? We have never found a closer ped. immunologist. Nice to meet you. I hope has a happy and overall well school year. Jan TKJM1987@... wrote: > Hi, All! My name is Kim and I have just recently found your group. > I have an eleven year-old daughter who is diagnosed with > selective antibody deficiency. She has been receiving IVIg for about > 1 1/2 years now on a regular basis. Her IgG numbers are slightly > below normal, she has a low IgA level, and she does not produce > antibodies in response to polysaccharides. It took us several years > to get her properly diagnosed. She was sick often as a young child, > spiked high temps for no reason all the time, and as she got older > she had this horrible constant cough (the only way she could sleep > was to be propped up). Novemeber of first grade she got very ill and > never got better. After 60 days of different antibiotics her > pneumonia had only gotten worse. I switched doctors. The new doc > put her on different meds and introduced us to the nebulizer which we > used every four hours for the next couple of years. had two > sinus surgeries to clean out her sinuses and remove polyps. She also > went through the IV antibiotics twice. By this time we were at > Children's Memorial in Chicago. They had tested her immune system, > but said it was O.K. Little did I know that because of an IVIg > infusion given this was not accurate. After her second sinus surgery > and month of IV antibiotics I took her to National Jewish in Colorado > (for whoever was asking, it was a wonderful place). The started her > on new meds, irrigated her sinuses with an attachment which goes on a > Water Pik (which helped a ton), and told us that because of the IVIg > her immune system needed to be retested. When we returned to > Chicago, we told her docs what we had found out, but they refused to > retest. We switched docs and found one who would - low an behold her > immune system was not O.K. We then began regular IVIg infusions. > She is currently getting them every three weeks. She is doing much > better. She is still congested most of the time and has some gastro > and urinary problems, but basically she is good. She also has > narcolepsy. Her body just seems to be off a little! Now that I > rambled on forever, I had better go. I am very glad to have found > all of you! > > Kim - Mom of , selective antibody deficiency > > > > 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 20, 2000 Report Share Posted November 20, 2000 Thanks for the welcome. I'm a little confused on how this whole system works, but now that I have a message from you, I'm sure I'll get it figured out. So far, my son has had his immunogloblins checked at least 3 times. All results have been below the minimum on the IGG levels. The last test showed it had dropped 50 more points since he was tested 3 months prior. His IGG range is 407-1187 and his level in July was 289. The doctor also checked the subclassed this time, which was a first. He also has a Subclass 1 and 4 deficiency, which I originally reported to this group as a subclass 2 deficiency. He also had the tetanus and pneumoccal shots last summer, with no results from the penumoccal. He goes the 22nd (this Wed) for additional tests and the Prevnar vaccine, I believe. My daughter has been in relatively good health since she had her tonsils removed at age 3. She has also had 3 ear surgeries: 1) tubes in the ears for chronic infections, 2) paper patch tempanoplasties because the tubes came out at the holes didn't heal - 1 ear worked and the other didn't; and 3) a permanent skin graft from behind her ear to patch the hole. They removed her stitches and when they checked her ear, the new skin graft had a hole in it. Of course, we were devastated! Anyway, we had her prayed for through our church and when we returned for the next follow-up visit, it was completed healed! She was recently discharged from the ENT for the first time since she was 2. I'm somewhat concerned that we may see similar symptoms with her that we have had with our son since I'm seeing many documents that indicate this is genetic. In your opinion, who is the leading physician in the US in the area of pediatric immunology? We live in Tulsa, Oklahoma and there are only 2 pediatric immunologists in town and we've seen both and are currently being diagnosed by the second physician, who I have great confidence in. However, I'm not sure how comfortable I am about IVIG at this point. First of all, we need to confirm a single diagnosis rather than a probable diagnosis. Then, we need to determine the treatment plan. Since he is at home and won't be going to kindergarten for 2 more years, we're not inclined to start IVIG even if his diagnosis is CVID. I understand, though, if it goes untreated, arthritis can develop which is irreversible even if you start IVIG. Maybe you can share with me your experiences. By the way, I've provided my e-mail address at work because we are currently building a house and are living in an apartment. Thus, we don't have our home computer operational until we move into our house. Once we move, I'll provide my new e-mail address. Shari Singleton NCQA Project Manager Manager, Legal & Regulatory Services This electronic message transmission contains information from PacifiCare Health Systems which may be confidential or privileged. The information is intended to be for the use of the individual(s) or entity named above. If you are not the intended recipient, be aware that any disclosure, copying, distribution or use of the contents of this information is prohibited. If you have received this electronic transmission in error, please notify me by telephone () or by electronic mail (shari.singleton@...) immediately. Thank you. > PedPID email list > > > > You recently requested to subscribe to the Pediatric Primary Immune > > Deficiency email list. A brief bio about yourself and your reason for > > interest in the group is requested. I will then add your name to the > > permanent mailing list. > > > > Thank you for your interest. > > > > PedPID Moderator > > > > > > > > > > > > > > > > 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 March 22, 2001 Report Share Posted March 22, 2001 , I can relate to you. My daughter (13) mildly autistic is in a class of mostly boys and has been all thru elementary school. She comes home now with tales that the boys have been talking " sex talk " to her and she hates them. I talked to the teacher and all she says is she never hears them saying anything like that. Also, since she has not been around girls, she thinks like a boy. As you know their social life has to be learned, and she has learned from boys who have behavior problems. We live in a small town in MD & I don't know what to do. New Member > > > > > > > > > Hi, Ive just joined this group in a hope that people actually talk > > > to > > > each other!! I haved tried to join several autistic groups, but > > > noone > > > ever speaks, or uses the ! chat room! I hope to meet other mums > > of > > > autistic girls, to prove I am not an only parent of a young > > autistic > > > > > > girl!! I look forward to hearing from anyone!!! michelle > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 , I can relate to you. My daughter (13) mildly autistic is in a class of mostly boys and has been all thru elementary school. She comes home now with tales that the boys have been talking " sex talk " to her and she hates them. I talked to the teacher and all she says is she never hears them saying anything like that. Also, since she has not been around girls, she thinks like a boy. As you know their social life has to be learned, and she has learned from boys who have behavior problems. We live in a small town in MD & I don't know what to do. New Member > > > > > > > > > Hi, Ive just joined this group in a hope that people actually talk > > > to > > > each other!! I haved tried to join several autistic groups, but > > > noone > > > ever speaks, or uses the ! chat room! I hope to meet other mums > > of > > > autistic girls, to prove I am not an only parent of a young > > autistic > > > > > > girl!! I look forward to hearing from anyone!!! michelle > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 , I can relate to you. My daughter (13) mildly autistic is in a class of mostly boys and has been all thru elementary school. She comes home now with tales that the boys have been talking " sex talk " to her and she hates them. I talked to the teacher and all she says is she never hears them saying anything like that. Also, since she has not been around girls, she thinks like a boy. As you know their social life has to be learned, and she has learned from boys who have behavior problems. We live in a small town in MD & I don't know what to do. New Member > > > > > > > > > Hi, Ive just joined this group in a hope that people actually talk > > > to > > > each other!! I haved tried to join several autistic groups, but > > > noone > > > ever speaks, or uses the ! chat room! I hope to meet other mums > > of > > > autistic girls, to prove I am not an only parent of a young > > autistic > > > > > > girl!! I look forward to hearing from anyone!!! michelle > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2001 Report Share Posted March 25, 2001 Heidi, Is the special school for your daughter a private one? Our 13 yr old autistic daughter is in special ed in middle school and it is not working out. Re: New Member Hi Michele, My daughter,Jolie,is 3 yrs. old,has been diagnosed withPDD-NOS and is a fraternal twin.We adopted her and her twin brother atbirth.She is the sweetest ,smartest ,most beautiful girl in the world.She isverbal and does well academically but has no social interest in otherchildren.She attends a full time program for children with autism. I am new to the computer and have been "on line"with this group for over amonth.All are very supportive and helpful.Welcome In friendship, Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2001 Report Share Posted March 25, 2001 Heidi, Is the special school for your daughter a private one? Our 13 yr old autistic daughter is in special ed in middle school and it is not working out. Re: New Member Hi Michele, My daughter,Jolie,is 3 yrs. old,has been diagnosed withPDD-NOS and is a fraternal twin.We adopted her and her twin brother atbirth.She is the sweetest ,smartest ,most beautiful girl in the world.She isverbal and does well academically but has no social interest in otherchildren.She attends a full time program for children with autism. I am new to the computer and have been "on line"with this group for over amonth.All are very supportive and helpful.Welcome In friendship, Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2001 Report Share Posted March 25, 2001 her sibs were so escalated in the elementary school-autistic classroom-none of the teachers were trained to use behavior techniques that she needed-so i wrote a letter to our school district-administration and placement specialist-we had a big meeting- i convinced them to get my daughter more help-so i also wrote a letter to the principal and administration of Devereux in our area(Devereux has programs throughout US)- then they contacted our school district-then we all had a big meeting-i was in tears by then end of it-i convinced everyone that she needed more help than i could give her at home due to the nature of the sibs(she was wearing a helmet to protect her scalp) she would bang on herself so frequently all day long-we were so very worried-i was afraid we would have to send her into residential-oh my god-not our girl-so she has been at Devereux Day School (she comes home at night) for a year now-between the medications and all there support and help-there are weeks now that she comes home and no sibs have occurred all day. Thus, making her more happy and manageable at home. The personnel at this place are trained to be consistant and implement various behavior techniques to manage behaviors that the regular school system cannot provide. What a difference. I mean she has improved 75%.! She will not have to go residential now and she will be able to stay at home and be with us. Guess what-2 weeks ago the helmet was removed - and put away because her sibs have become very infrequent. She still has trouble when she goes out of her routines or during transitioning times or when out in public places. But at home, she is playing-happy most of time-and if sibs occur -i make her do task-box and then she stops. ~heidi~ Re: New Member Hi Michele, My daughter,Jolie,is 3 yrs. old,has been diagnosed withPDD-NOS and is a fraternal twin.We adopted her and her twin brother atbirth.She is the sweetest ,smartest ,most beautiful girl in the world.She isverbal and does well academically but has no social interest in otherchildren.She attends a full time program for children with autism. I am new to the computer and have been "on line"with this group for over amonth.All are very supportive and helpful.Welcome In friendship, Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2001 Report Share Posted March 25, 2001 her sibs were so escalated in the elementary school-autistic classroom-none of the teachers were trained to use behavior techniques that she needed-so i wrote a letter to our school district-administration and placement specialist-we had a big meeting- i convinced them to get my daughter more help-so i also wrote a letter to the principal and administration of Devereux in our area(Devereux has programs throughout US)- then they contacted our school district-then we all had a big meeting-i was in tears by then end of it-i convinced everyone that she needed more help than i could give her at home due to the nature of the sibs(she was wearing a helmet to protect her scalp) she would bang on herself so frequently all day long-we were so very worried-i was afraid we would have to send her into residential-oh my god-not our girl-so she has been at Devereux Day School (she comes home at night) for a year now-between the medications and all there support and help-there are weeks now that she comes home and no sibs have occurred all day. Thus, making her more happy and manageable at home. The personnel at this place are trained to be consistant and implement various behavior techniques to manage behaviors that the regular school system cannot provide. What a difference. I mean she has improved 75%.! She will not have to go residential now and she will be able to stay at home and be with us. Guess what-2 weeks ago the helmet was removed - and put away because her sibs have become very infrequent. She still has trouble when she goes out of her routines or during transitioning times or when out in public places. But at home, she is playing-happy most of time-and if sibs occur -i make her do task-box and then she stops. ~heidi~ Re: New Member Hi Michele, My daughter,Jolie,is 3 yrs. old,has been diagnosed withPDD-NOS and is a fraternal twin.We adopted her and her twin brother atbirth.She is the sweetest ,smartest ,most beautiful girl in the world.She isverbal and does well academically but has no social interest in otherchildren.She attends a full time program for children with autism. I am new to the computer and have been "on line"with this group for over amonth.All are very supportive and helpful.Welcome In friendship, Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2001 Report Share Posted March 25, 2001 her sibs were so escalated in the elementary school-autistic classroom-none of the teachers were trained to use behavior techniques that she needed-so i wrote a letter to our school district-administration and placement specialist-we had a big meeting- i convinced them to get my daughter more help-so i also wrote a letter to the principal and administration of Devereux in our area(Devereux has programs throughout US)- then they contacted our school district-then we all had a big meeting-i was in tears by then end of it-i convinced everyone that she needed more help than i could give her at home due to the nature of the sibs(she was wearing a helmet to protect her scalp) she would bang on herself so frequently all day long-we were so very worried-i was afraid we would have to send her into residential-oh my god-not our girl-so she has been at Devereux Day School (she comes home at night) for a year now-between the medications and all there support and help-there are weeks now that she comes home and no sibs have occurred all day. Thus, making her more happy and manageable at home. The personnel at this place are trained to be consistant and implement various behavior techniques to manage behaviors that the regular school system cannot provide. What a difference. I mean she has improved 75%.! She will not have to go residential now and she will be able to stay at home and be with us. Guess what-2 weeks ago the helmet was removed - and put away because her sibs have become very infrequent. She still has trouble when she goes out of her routines or during transitioning times or when out in public places. But at home, she is playing-happy most of time-and if sibs occur -i make her do task-box and then she stops. ~heidi~ Re: New Member Hi Michele, My daughter,Jolie,is 3 yrs. old,has been diagnosed withPDD-NOS and is a fraternal twin.We adopted her and her twin brother atbirth.She is the sweetest ,smartest ,most beautiful girl in the world.She isverbal and does well academically but has no social interest in otherchildren.She attends a full time program for children with autism. I am new to the computer and have been "on line"with this group for over amonth.All are very supportive and helpful.Welcome In friendship, Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2001 Report Share Posted March 26, 2001 Hi. My daughter, Haylee, is 4 1/2. Our school in Iowa pays for Haylee's ABA. She has a one on one aide 8-3:30 M-F. Her ABA is done at home. She spends 10 hours at a regular preschool and 27.5 hours ABA with her aide, I do 10-15 hours in the evenings and weekends. We've been doing ABA since last June. We also have had her on the gfcf diet for a year and have been working with supplements for a year also. I give her cod liver oil, flax seed oil, super-nu thera, vit. c, food enzymes, colloidal minerals, bifadophalus, sam-e, and a multivitamin. She has made dramatic improvement over the last year. She is far ahead of other children her age in academics, although she has some trouble with fine motor stuff. We're working hard on her social skills in her ABA. I have a daycare in my home so it works perfectly into her ABA. When they take their " structured " breaks from the ABA we work on social skills, we also send a child in to work with her one on one, play games, conversation, etc. Haylee has another year before Kindergarten. Hopefully we can get her where she needs to be socially before then. Sounds like you've got a great program going for Bridget. Congratulations. That's half the battle. Good luck with Kindergarten. Has your school suggested that she attend the Kindergarten room a few days before the school year is over? They do that here. Haylee doesn't have a hard time transitioning and for her it would just confuse her. But for some kids it really helps them and gives you some ideas for accomodations before the school year begins. Good luck. I enjoyed reading about your daughter. Dawn from Iowa mother to Camden Haylee (autistic) >From: dbe3452@... >Reply-To: Autism_in_Girls >To: Autism_in_Girls >Subject: New member >Date: Sun, 25 Mar 2001 00:14:45 -0000 > >Hi from the Great Northwest. This computer is only two weeks old so >bear with me. My daughter Bridget just turned five, she attends an >ECSE prescool in our area. I Was driving 45 minutes to an hour each >way 2 or 3 times a week taking her to private ABA services, but even >at 4.5 hours a week we were spending close to 900.00 a month. I >don't know about all of you but it was brutal trying to keep up with >that. I still feel guilt over taking her out but I really had no >choice. She gets @ 20 hrs a week from the ESD. That includes to >language groups that have been wonderful for her. The kids may be >delayed in their speech but they are socially pretty on target. >Bridget is verbal and has just recently begun expressing herself so >much better, using greetings when she sees people, asking kids to >play using their names etc. The other day she asked a little boy in >her class to play and they spent 45 minutes on the teeter-totter >interacting. This has been a major breakthrough-if this hasn't >happened for you yet, know that it is possible. Are any of you guys >GFCF? We have been for almost a year. Bee is also supplemented with >vits. and minerals, acidophilus, iron and calcium. I get her some >extra EFA's transdermally after her baths-basically a massage with >primrose oil. Our recent trial has been with natural vitamin A and I >do attribute some of her breakthrough to that, so does her teacher. >Are any of you interested in this stuff? Do I feel eyes rolling back >in heads? HaHa! I'll just say before I end this that her preschool >teachers have been great. Transitioning to kindergarten has me a >little nervous-we live in a small rural community where funding is an >issue and our state is not exactly on the cutting edge of autism >education in the public schools. Did that make sense? My husband >was talking to me. Best wishes to everyone, chins up! Hope to talk >to someone soon. >Deanna > _________________________________________________________________ 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 March 26, 2001 Report Share Posted March 26, 2001 Hi. My daughter, Haylee, is 4 1/2. Our school in Iowa pays for Haylee's ABA. She has a one on one aide 8-3:30 M-F. Her ABA is done at home. She spends 10 hours at a regular preschool and 27.5 hours ABA with her aide, I do 10-15 hours in the evenings and weekends. We've been doing ABA since last June. We also have had her on the gfcf diet for a year and have been working with supplements for a year also. I give her cod liver oil, flax seed oil, super-nu thera, vit. c, food enzymes, colloidal minerals, bifadophalus, sam-e, and a multivitamin. She has made dramatic improvement over the last year. She is far ahead of other children her age in academics, although she has some trouble with fine motor stuff. We're working hard on her social skills in her ABA. I have a daycare in my home so it works perfectly into her ABA. When they take their " structured " breaks from the ABA we work on social skills, we also send a child in to work with her one on one, play games, conversation, etc. Haylee has another year before Kindergarten. Hopefully we can get her where she needs to be socially before then. Sounds like you've got a great program going for Bridget. Congratulations. That's half the battle. Good luck with Kindergarten. Has your school suggested that she attend the Kindergarten room a few days before the school year is over? They do that here. Haylee doesn't have a hard time transitioning and for her it would just confuse her. But for some kids it really helps them and gives you some ideas for accomodations before the school year begins. Good luck. I enjoyed reading about your daughter. Dawn from Iowa mother to Camden Haylee (autistic) >From: dbe3452@... >Reply-To: Autism_in_Girls >To: Autism_in_Girls >Subject: New member >Date: Sun, 25 Mar 2001 00:14:45 -0000 > >Hi from the Great Northwest. This computer is only two weeks old so >bear with me. My daughter Bridget just turned five, she attends an >ECSE prescool in our area. I Was driving 45 minutes to an hour each >way 2 or 3 times a week taking her to private ABA services, but even >at 4.5 hours a week we were spending close to 900.00 a month. I >don't know about all of you but it was brutal trying to keep up with >that. I still feel guilt over taking her out but I really had no >choice. She gets @ 20 hrs a week from the ESD. That includes to >language groups that have been wonderful for her. The kids may be >delayed in their speech but they are socially pretty on target. >Bridget is verbal and has just recently begun expressing herself so >much better, using greetings when she sees people, asking kids to >play using their names etc. The other day she asked a little boy in >her class to play and they spent 45 minutes on the teeter-totter >interacting. This has been a major breakthrough-if this hasn't >happened for you yet, know that it is possible. Are any of you guys >GFCF? We have been for almost a year. Bee is also supplemented with >vits. and minerals, acidophilus, iron and calcium. I get her some >extra EFA's transdermally after her baths-basically a massage with >primrose oil. Our recent trial has been with natural vitamin A and I >do attribute some of her breakthrough to that, so does her teacher. >Are any of you interested in this stuff? Do I feel eyes rolling back >in heads? HaHa! I'll just say before I end this that her preschool >teachers have been great. Transitioning to kindergarten has me a >little nervous-we live in a small rural community where funding is an >issue and our state is not exactly on the cutting edge of autism >education in the public schools. Did that make sense? My husband >was talking to me. Best wishes to everyone, chins up! Hope to talk >to someone soon. >Deanna > _________________________________________________________________ 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 March 26, 2001 Report Share Posted March 26, 2001 Hi. My daughter, Haylee, is 4 1/2. Our school in Iowa pays for Haylee's ABA. She has a one on one aide 8-3:30 M-F. Her ABA is done at home. She spends 10 hours at a regular preschool and 27.5 hours ABA with her aide, I do 10-15 hours in the evenings and weekends. We've been doing ABA since last June. We also have had her on the gfcf diet for a year and have been working with supplements for a year also. I give her cod liver oil, flax seed oil, super-nu thera, vit. c, food enzymes, colloidal minerals, bifadophalus, sam-e, and a multivitamin. She has made dramatic improvement over the last year. She is far ahead of other children her age in academics, although she has some trouble with fine motor stuff. We're working hard on her social skills in her ABA. I have a daycare in my home so it works perfectly into her ABA. When they take their " structured " breaks from the ABA we work on social skills, we also send a child in to work with her one on one, play games, conversation, etc. Haylee has another year before Kindergarten. Hopefully we can get her where she needs to be socially before then. Sounds like you've got a great program going for Bridget. Congratulations. That's half the battle. Good luck with Kindergarten. Has your school suggested that she attend the Kindergarten room a few days before the school year is over? They do that here. Haylee doesn't have a hard time transitioning and for her it would just confuse her. But for some kids it really helps them and gives you some ideas for accomodations before the school year begins. Good luck. I enjoyed reading about your daughter. Dawn from Iowa mother to Camden Haylee (autistic) >From: dbe3452@... >Reply-To: Autism_in_Girls >To: Autism_in_Girls >Subject: New member >Date: Sun, 25 Mar 2001 00:14:45 -0000 > >Hi from the Great Northwest. This computer is only two weeks old so >bear with me. My daughter Bridget just turned five, she attends an >ECSE prescool in our area. I Was driving 45 minutes to an hour each >way 2 or 3 times a week taking her to private ABA services, but even >at 4.5 hours a week we were spending close to 900.00 a month. I >don't know about all of you but it was brutal trying to keep up with >that. I still feel guilt over taking her out but I really had no >choice. She gets @ 20 hrs a week from the ESD. That includes to >language groups that have been wonderful for her. The kids may be >delayed in their speech but they are socially pretty on target. >Bridget is verbal and has just recently begun expressing herself so >much better, using greetings when she sees people, asking kids to >play using their names etc. The other day she asked a little boy in >her class to play and they spent 45 minutes on the teeter-totter >interacting. This has been a major breakthrough-if this hasn't >happened for you yet, know that it is possible. Are any of you guys >GFCF? We have been for almost a year. Bee is also supplemented with >vits. and minerals, acidophilus, iron and calcium. I get her some >extra EFA's transdermally after her baths-basically a massage with >primrose oil. Our recent trial has been with natural vitamin A and I >do attribute some of her breakthrough to that, so does her teacher. >Are any of you interested in this stuff? Do I feel eyes rolling back >in heads? HaHa! I'll just say before I end this that her preschool >teachers have been great. Transitioning to kindergarten has me a >little nervous-we live in a small rural community where funding is an >issue and our state is not exactly on the cutting edge of autism >education in the public schools. Did that make sense? My husband >was talking to me. Best wishes to everyone, chins up! Hope to talk >to someone soon. >Deanna > _________________________________________________________________ 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 March 27, 2001 Report Share Posted March 27, 2001 Hi Sue. We live in NW Iowa. Where do you live? I don't think all schools are as supportive as ours. But I have learned that by saying " I know there is an autistic child in this school district receiving these services in Iowa... " then the administrators are more likely to go for it if they know it is happening somewhere else. The first obstacle was making sure she had the funding for a one on one aide. To receive this your local Area Education Agency has to classify her a level 3. That gets your school district $13,000. More than enough to pay for an aide, they only make $6.50/hour here, sad huh? I read about all of Haylee's interventions on the internet. Then I started making contacts and finding the support I needed. Research the Sunderland Protocal. It has been very helpful. It gives you a step by step guide to getting your daughter healthy again. The first step is the gfcf diet. I can't find a doctor to support me on this but this diet has been amazing for Haylee. Then start supplements slowly. I couldn't do it without our health food store. Not only do they have everything I need but they give me direction. And YES, the supplements have really helped. Here is a run down of what I am giving Haylee but keep in mind that we have worked up to this slowly. Her body could not have tolerated all this in the beginning. 3 T flax seed oil, 1/2 t cod liver oil, 2 t liquid multivitamin, 3 bifadophalus capsules, 2 food enzyme capsules, 1/2 tsp super-nu thera, 1/4 t vitamin c crystals, 1 t colloidal minerals, 5 drops Pau D'Arco (yeast treatment), 1 Sam-e tablet. Every child is different. This is what is working for Haylee right now. What we give her and the amount is always changing. Your daughter's body may not be ready for some of this. We started with the multivitamin, food enzymes, flax seed oil and colloidal minerals. Good luck. Dawn > >Reply-To: Autism_in_Girls >To: <Autism_in_Girls > >CC: >Subject: Re: New member >Date: Mon, 26 Mar 2001 23:07:00 -0600 > >Dawn, > i am new to this program and i am just wondering where abouts do >you live in iowa, cause i live in iowa and i never heard of all of what you >mentioned in here. I have a daughter who is autistic and she is 13 years >old and having a hard time trying to get her what she needs to learn and >try to get her back to some extent of what she used to be before all this >happened to her. If you can give me some info on that it will be very >helpful and what exactly is all that stuff you are giving your child and >does it really work and how much of it do you give her? Please let me >know i am very desperate. Thanks, Sue from iowa > New member > >Date: Sun, 25 Mar 2001 00:14:45 -0000 > > > >Hi from the Great Northwest. This computer is only two weeks old so > >bear with me. My daughter Bridget just turned five, she attends an > >ECSE prescool in our area. I Was driving 45 minutes to an hour each > >way 2 or 3 times a week taking her to private ABA services, but even > >at 4.5 hours a week we were spending close to 900.00 a month. I > >don't know about all of you but it was brutal trying to keep up with > >that. I still feel guilt over taking her out but I really had no > >choice. She gets @ 20 hrs a week from the ESD. That includes to > >language groups that have been wonderful for her. The kids may be > >delayed in their speech but they are socially pretty on target. > >Bridget is verbal and has just recently begun expressing herself so > >much better, using greetings when she sees people, asking kids to > >play using their names etc. The other day she asked a little boy in > >her class to play and they spent 45 minutes on the teeter-totter > >interacting. This has been a major breakthrough-if this hasn't > >happened for you yet, know that it is possible. Are any of you guys > >GFCF? We have been for almost a year. Bee is also supplemented with > >vits. and minerals, acidophilus, iron and calcium. I get her some > >extra EFA's transdermally after her baths-basically a massage with > >primrose oil. Our recent trial has been with natural vitamin A and I > >do attribute some of her breakthrough to that, so does her teacher. > >Are any of you interested in this stuff? Do I feel eyes rolling back > >in heads? HaHa! I'll just say before I end this that her preschool > >teachers have been great. Transitioning to kindergarten has me a > >little nervous-we live in a small rural community where funding is an > >issue and our state is not exactly on the cutting edge of autism > >education in the public schools. Did that make sense? My husband > >was talking to me. Best wishes to everyone, chins up! Hope to talk > >to someone soon. > >Deanna > > > > _________________________________________________________________ > 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 March 27, 2001 Report Share Posted March 27, 2001 Hi Sue. We live in NW Iowa. Where do you live? I don't think all schools are as supportive as ours. But I have learned that by saying " I know there is an autistic child in this school district receiving these services in Iowa... " then the administrators are more likely to go for it if they know it is happening somewhere else. The first obstacle was making sure she had the funding for a one on one aide. To receive this your local Area Education Agency has to classify her a level 3. That gets your school district $13,000. More than enough to pay for an aide, they only make $6.50/hour here, sad huh? I read about all of Haylee's interventions on the internet. Then I started making contacts and finding the support I needed. Research the Sunderland Protocal. It has been very helpful. It gives you a step by step guide to getting your daughter healthy again. The first step is the gfcf diet. I can't find a doctor to support me on this but this diet has been amazing for Haylee. Then start supplements slowly. I couldn't do it without our health food store. Not only do they have everything I need but they give me direction. And YES, the supplements have really helped. Here is a run down of what I am giving Haylee but keep in mind that we have worked up to this slowly. Her body could not have tolerated all this in the beginning. 3 T flax seed oil, 1/2 t cod liver oil, 2 t liquid multivitamin, 3 bifadophalus capsules, 2 food enzyme capsules, 1/2 tsp super-nu thera, 1/4 t vitamin c crystals, 1 t colloidal minerals, 5 drops Pau D'Arco (yeast treatment), 1 Sam-e tablet. Every child is different. This is what is working for Haylee right now. What we give her and the amount is always changing. Your daughter's body may not be ready for some of this. We started with the multivitamin, food enzymes, flax seed oil and colloidal minerals. Good luck. Dawn > >Reply-To: Autism_in_Girls >To: <Autism_in_Girls > >CC: >Subject: Re: New member >Date: Mon, 26 Mar 2001 23:07:00 -0600 > >Dawn, > i am new to this program and i am just wondering where abouts do >you live in iowa, cause i live in iowa and i never heard of all of what you >mentioned in here. I have a daughter who is autistic and she is 13 years >old and having a hard time trying to get her what she needs to learn and >try to get her back to some extent of what she used to be before all this >happened to her. If you can give me some info on that it will be very >helpful and what exactly is all that stuff you are giving your child and >does it really work and how much of it do you give her? Please let me >know i am very desperate. Thanks, Sue from iowa > New member > >Date: Sun, 25 Mar 2001 00:14:45 -0000 > > > >Hi from the Great Northwest. This computer is only two weeks old so > >bear with me. My daughter Bridget just turned five, she attends an > >ECSE prescool in our area. I Was driving 45 minutes to an hour each > >way 2 or 3 times a week taking her to private ABA services, but even > >at 4.5 hours a week we were spending close to 900.00 a month. I > >don't know about all of you but it was brutal trying to keep up with > >that. I still feel guilt over taking her out but I really had no > >choice. She gets @ 20 hrs a week from the ESD. That includes to > >language groups that have been wonderful for her. The kids may be > >delayed in their speech but they are socially pretty on target. > >Bridget is verbal and has just recently begun expressing herself so > >much better, using greetings when she sees people, asking kids to > >play using their names etc. The other day she asked a little boy in > >her class to play and they spent 45 minutes on the teeter-totter > >interacting. This has been a major breakthrough-if this hasn't > >happened for you yet, know that it is possible. Are any of you guys > >GFCF? We have been for almost a year. Bee is also supplemented with > >vits. and minerals, acidophilus, iron and calcium. I get her some > >extra EFA's transdermally after her baths-basically a massage with > >primrose oil. Our recent trial has been with natural vitamin A and I > >do attribute some of her breakthrough to that, so does her teacher. > >Are any of you interested in this stuff? Do I feel eyes rolling back > >in heads? HaHa! I'll just say before I end this that her preschool > >teachers have been great. Transitioning to kindergarten has me a > >little nervous-we live in a small rural community where funding is an > >issue and our state is not exactly on the cutting edge of autism > >education in the public schools. Did that make sense? My husband > >was talking to me. Best wishes to everyone, chins up! Hope to talk > >to someone soon. > >Deanna > > > > _________________________________________________________________ > 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 March 29, 2001 Report Share Posted March 29, 2001 QTtoes, I'm so happy to see that you decided to join the group! I know you'll be able to get so much more information here than what I gave you. Since Chad was diagnosed 9 years ago, I'm not current like all the other mothers here are on the latest testing and procedures. We've reached the point with Chad that we're sticking with the basics and staying the course for the most part. Please feel free to still email me and let me know how things are coming along and I'll keep up with your posts here as well. The address listed here is different than the one you have, but you can use either of them. I'll be hoping for you to soon have your little girl's full diagnosis and a plan for treatment to get and keep her at her best. , Chad's Mom, age 9, Hypogammaglobulinemia, GERD, Asthma/Bronchitis, " Allergy King " , Scoliosis, ??IGA Nephropathy, Anemia Re: Hypogammaglobulinanemia > > > Hi i saw your post on the message board it was my first time there, my > daughter has just been diagnosed with the same she is 6 i'd love to chat > maybe insant message or something E-mail me QTtoes55@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2001 Report Share Posted March 29, 2001 QTtoes, I'm so happy to see that you decided to join the group! I know you'll be able to get so much more information here than what I gave you. Since Chad was diagnosed 9 years ago, I'm not current like all the other mothers here are on the latest testing and procedures. We've reached the point with Chad that we're sticking with the basics and staying the course for the most part. Please feel free to still email me and let me know how things are coming along and I'll keep up with your posts here as well. The address listed here is different than the one you have, but you can use either of them. I'll be hoping for you to soon have your little girl's full diagnosis and a plan for treatment to get and keep her at her best. , Chad's Mom, age 9, Hypogammaglobulinemia, GERD, Asthma/Bronchitis, " Allergy King " , Scoliosis, ??IGA Nephropathy, Anemia Re: Hypogammaglobulinanemia > > > Hi i saw your post on the message board it was my first time there, my > daughter has just been diagnosed with the same she is 6 i'd love to chat > maybe insant message or something E-mail me QTtoes55@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2001 Report Share Posted March 29, 2001 QTtoes, I'm so happy to see that you decided to join the group! I know you'll be able to get so much more information here than what I gave you. Since Chad was diagnosed 9 years ago, I'm not current like all the other mothers here are on the latest testing and procedures. We've reached the point with Chad that we're sticking with the basics and staying the course for the most part. Please feel free to still email me and let me know how things are coming along and I'll keep up with your posts here as well. The address listed here is different than the one you have, but you can use either of them. I'll be hoping for you to soon have your little girl's full diagnosis and a plan for treatment to get and keep her at her best. , Chad's Mom, age 9, Hypogammaglobulinemia, GERD, Asthma/Bronchitis, " Allergy King " , Scoliosis, ??IGA Nephropathy, Anemia Re: Hypogammaglobulinanemia > > > Hi i saw your post on the message board it was my first time there, my > daughter has just been diagnosed with the same she is 6 i'd love to chat > maybe insant message or something E-mail me QTtoes55@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2001 Report Share Posted March 30, 2001 New Member, I am sorry, but I don't know your name. I am Jan. I have a 9 yr.old girl and a 13 yr. old boy. My son has CVID. I believe his IgA is on the low end of normal, but very low on IgG and IgM. I plan to ask about the IgA at our next Immuno. appt. He was diagnosed at age 2 1/2 and began IVIG immediately during that hospital visit. I live in the TX Panhandle. My son is doing well. He had surgery and complications last year, but otherwise did well. He is quite small for his age and no one believes how old he is. He doesn't like that and is sensitive about it at this age. He has digestive problems including a diagnosis of Shwachman's Syndrome. He does not look ill, just small. I am happy a Mom with a boy of his age is on this list. He is a 7th grader. Welcome to the list. Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2001 Report Share Posted March 30, 2001 New Member, I am sorry, but I don't know your name. I am Jan. I have a 9 yr.old girl and a 13 yr. old boy. My son has CVID. I believe his IgA is on the low end of normal, but very low on IgG and IgM. I plan to ask about the IgA at our next Immuno. appt. He was diagnosed at age 2 1/2 and began IVIG immediately during that hospital visit. I live in the TX Panhandle. My son is doing well. He had surgery and complications last year, but otherwise did well. He is quite small for his age and no one believes how old he is. He doesn't like that and is sensitive about it at this age. He has digestive problems including a diagnosis of Shwachman's Syndrome. He does not look ill, just small. I am happy a Mom with a boy of his age is on this list. He is a 7th grader. Welcome to the list. Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2001 Report Share Posted March 30, 2001 New Member, I am sorry, but I don't know your name. I am Jan. I have a 9 yr.old girl and a 13 yr. old boy. My son has CVID. I believe his IgA is on the low end of normal, but very low on IgG and IgM. I plan to ask about the IgA at our next Immuno. appt. He was diagnosed at age 2 1/2 and began IVIG immediately during that hospital visit. I live in the TX Panhandle. My son is doing well. He had surgery and complications last year, but otherwise did well. He is quite small for his age and no one believes how old he is. He doesn't like that and is sensitive about it at this age. He has digestive problems including a diagnosis of Shwachman's Syndrome. He does not look ill, just small. I am happy a Mom with a boy of his age is on this list. He is a 7th grader. Welcome to the list. Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2001 Report Share Posted June 5, 2001 Hi Tracey, My name is Roxanne and I too have an Autistic girl...Arielle...4.5 years old. Extremely high functioning and making wonderful progress. We have been doing various types of therapy for a couple of years now and Arielle is almost indistinguishable from her peers. I live in Oakville, Ontario and I noticed that you were from Ontario as well. What part? Email me privately if you like or please write to me at this list group or the Autism Ontario list group. Take Care and best of luck! Roxanne __________________________________________________________________________ Duane and Tracey Pratt wrote: Hello Everyone I am new to the list and would like to introduce myself. My name is Tracey and I have two children. Our oldest is Coral and she is almost 11 and we have an 8 year old daughter named Skylar who is autistic. We live in a small community in Ontario, Canada. We are very fortunate to have alot of services available to our dauther and a very supportive school. Our daughter is integrated into a regular grade 3 classroom with an Educational Assistant. Skylar was diagnosed at the age of 3 1/2. She has made great progress and we are very excited about her accomplishments. She has a small groups of friends that like her accept her the way she is. I was very glad to find this site because almost all the information I find on autisim is based on boys because it occurs mostly in the boys. I will be glad to hear from and talk to others with autistic girls. Thank you Tracey Quote Link to comment Share on other sites More sharing options...
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