Guest guest Posted March 19, 2003 Report Share Posted March 19, 2003 you aren't whining and even if you were, after a day like that, it's allowed!!! :-) Carol April is Autism Awareness Month Trishasmom She isn't typical, She's Trisha! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2003 Report Share Posted March 20, 2003 In a message dated 3/19/2003 3:57:51 PM Eastern Standard Time, juneajack@... writes: > They each had his arms and the other aid was behind him > and he headbutted her and gave her a concussion. When > I got to school to pick him up, the ambulances were out > front and it was awful. Oh June, sure sounds awful!!! I'm sorry. Feel free to vent any time here!! BTW, welcome to the group. Do you have other children? First off, you need to have the school do an FBA (functional behavior analysis) on Zachary and to follow up with a behavior plan. Do they use a picture exchange communication system with Zach? Obviously, they are not allowing him time to process what it is they are asking of him....another important piece. I think it's a good idea to talk to your doc. We're in the process of making a jump to meds for Maddie (9, DS and autism) for the first time...it's scary. But when you are in a place that needs change PRONTO, you do what you must. Good luck and keep us posted. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2003 Report Share Posted March 21, 2003 Hi I'm Judy. My son is 27. I'm not sure how old your son is? We have been through so much over the years with the school systems too. I have always tried to do as they " the professionals " said. However, I do not think they are always right. You probably know your son better than anyone else. I am not sure what type of program he is in but when he doesn't want to do something, maybe there is a reason. I read recently in a behavior strategies book recommended to me that, " behavior is communication " . To this day I believe that they should not be forced to do something like making your son go back to his seat if he is truly not interested in do it. He should be taken out of the area into a place where he is comfortable and given time to calm down. If you back a tiger into a corner he is going to jump back at you. Of course I made that up, ha. I'm sorry you are having these troubles. So many times my son had problems over the years where the teachers or aides forced him to do something he didn't want to do. And of course the result was negative. He fought them. Now we just let him sit where he is until he is ready to comply. If it isn't a good day, maybe some tylenol might be the answer to help. I have always given Kent tylenol when he is grinding his teeth or just out of sorts. It works. Maybe a headphones with music or just a walk around would be better than forcing him to do something. Don't get into or let the school get into a position of fighting him because he will be the one that loses. The schools gang up and stick together when our kids do anything. They get the blame and the school throws up their hands and says, but, why? Sorry for my negativity but over the years I have had my hands full of the school systems and their ideas that change from day-to-day or the fact that they will try something with a kid, find it works and not continue it. These kids need structure, consistency and people that like them. They don't need people that they " feel " threatens them. They may not talk but like a blind person have a keen sense of who likes them or doesn't like them. It is time parents start writing into the IEP's some of the things that work for them as parents/moms/dads and just because someone is a special education teacher or aide doesn't make them an authority. Please tell them what works best for Zach and make them do it. Do not force him to do something when he is having a hard time. Hope this helps. I am so sick of the special education field of experts. It is time they learn to listen to parents. Sorry for the preaching. Write to me if you need. ytribe@.... Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Congratulations Risa, that's awesome! Sara, 7.5months Starband Mishawaka, IN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 hello all, just wanted to say hello, and tell everyone that we just came from seeing dry stelnicki for Zachary's follow-up. he measured, and evaluated, and said that Zachary's ears and ears are perfectly symmetrical now, and that while he still has one little flat area, he expects that to pop up shortly, he made me feel that area, and showed me how it will come up, again in little popcorn bumps, just like the rest..he told me he was officially kicking us out of his office, and that we dodged the bullet, and what a fine job we have done with Zach. HE ALSO SAID WE CAN CONSIDER ZACH A REPO SUCCESS....YEAHHHH ZACHY..he is now a crawling, cruising 8 months old, who is almost never on his back, so I am truly a happy camper right now, thank you all so much for the support and great ideas on repoing...-risa Risa-mother to: 2/20/98Zachary 6/18/03husband-Larry 9/17/95 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 I will definitely stick around to help in any way that I can-risa Re: zachary Wow Risa, what great news! You must be SO excited! It sounds like you've truly done a wonderful job repoing. I hope you'll stick around and share your tips with other repo parents. , mom to Hannah, DOCgradCape Cod, Ma> hello all, just wanted to say hello, and tell everyone that we just came from seeing dry stelnicki for Zachary's follow-up. he measured, and evaluated, and said that Zachary's ears and ears are perfectly symmetrical now, and that while he still has one little flat area, he expects that to pop up shortly, he made me feel that area, and showed me how it will come up, again in little popcorn bumps, just like the rest..he told me he was officially kicking us out of his office, and that we dodged the bullet, and what a fine job we have done with Zach. HE ALSO SAID WE CAN CONSIDER ZACH A REPO SUCCESS....YEAHHHH ZACHY..he is now a crawling, cruising 8 months old, who is almost never on his back, so I am truly a happy camper right now, thank you all so much for the support and great ideas on repoing...-risa> Risa-mother to:> 2/20/98> Zachary 6/18/03> husband-Larry 9/17/95For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 WOOOHOOOO!!! Risa, I am sooo happy for you. Please post Zach's pictures. Are you done repoing now? Is Zach a repo grad now? Congratulations on all your hard work paying off. > hello all, just wanted to say hello, and tell everyone that we just came from seeing dry stelnicki for Zachary's follow-up. he measured, and evaluated, and said that Zachary's ears and ears are perfectly symmetrical now, and that while he still has one little flat area, he expects that to pop up shortly, he made me feel that area, and showed me how it will come up, again in little popcorn bumps, just like the rest..he told me he was officially kicking us out of his office, and that we dodged the bullet, and what a fine job we have done with Zach. HE ALSO SAID WE CAN CONSIDER ZACH A REPO SUCCESS....YEAHHHH ZACHY..he is now a crawling, cruising 8 months old, who is almost never on his back, so I am truly a happy camper right now, thank you all so much for the support and great ideas on repoing...-risa > Risa-mother to: > 2/20/98 > Zachary 6/18/03 > husband-Larry 9/17/95 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Oh Risa! I'm soooo happy for you. You deserve a huge round of applause for all your wonderful hard work & persistence! Yay Debbie > > > hello all, just wanted to say hello, and tell everyone that we just > came from seeing dry stelnicki for Zachary's follow-up. he measured, > and evaluated, and said that Zachary's ears and ears are perfectly > symmetrical now, and that while he still has one little flat area, he > expects that to pop up shortly, he made me feel that area, and showed > me how it will come up, again in little popcorn bumps, just like the > rest..he told me he was officially kicking us out of his office, and > that we dodged the bullet, and what a fine job we have done with > Zach. HE ALSO SAID WE CAN CONSIDER ZACH A REPO SUCCESS....YEAHHHH > ZACHY..he is now a crawling, cruising 8 months old, who is almost > never on his back, so I am truly a happy camper right now, thank you > all so much for the support and great ideas on repoing...-risa > > Risa-mother to: > > 2/20/98 > > Zachary 6/18/03 > > husband-Larry 9/17/95 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Hi Risa, This is wonderful news! Way to round Zachary! It's great to hear that he's crawling and cruising too (what a help when you're repo'ing). Please post a picture for us soon and pat yourself on the back! Great job!! Kel (currently repo'ing 7 month old ) > hello all, just wanted to say hello, and tell everyone that we just came from seeing dry stelnicki for Zachary's follow-up. he measured, and evaluated, and said that Zachary's ears and ears are perfectly symmetrical now, and that while he still has one little flat area, he expects that to pop up shortly, he made me feel that area, and showed me how it will come up, again in little popcorn bumps, just like the rest..he told me he was officially kicking us out of his office, and that we dodged the bullet, and what a fine job we have done with Zach. HE ALSO SAID WE CAN CONSIDER ZACH A REPO SUCCESS....YEAHHHH ZACHY..he is now a crawling, cruising 8 months old, who is almost never on his back, so I am truly a happy camper right now, thank you all so much for the support and great ideas on repoing...-risa > Risa-mother to: > 2/20/98 > Zachary 6/18/03 > husband-Larry 9/17/95 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 HELLO STACY, to me, when Zach is fully rounded, I will say he is a repo grad, until then, I will keep going...I will try to take some good shots for comparison-risa Re: zachary WOOOHOOOO!!!Risa, I am sooo happy for you. Please post Zach's pictures. Are you done repoing now? Is Zach a repo grad now? Congratulations on all your hard work paying off. > hello all, just wanted to say hello, and tell everyone that we just came from seeing dry stelnicki for Zachary's follow-up. he measured, and evaluated, and said that Zachary's ears and ears are perfectly symmetrical now, and that while he still has one little flat area, he expects that to pop up shortly, he made me feel that area, and showed me how it will come up, again in little popcorn bumps, just like the rest..he told me he was officially kicking us out of his office, and that we dodged the bullet, and what a fine job we have done with Zach. HE ALSO SAID WE CAN CONSIDER ZACH A REPO SUCCESS....YEAHHHH ZACHY..he is now a crawling, cruising 8 months old, who is almost never on his back, so I am truly a happy camper right now, thank you all so much for the support and great ideas on repoing...-risa> Risa-mother to:> 2/20/98> Zachary 6/18/03> husband-Larry 9/17/95For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 --Risa, That is wonderful news!!! I am so happy for you. I admire all of your hard work with repo. We were not successful with repoing Jenna. Angie and JEnna(STAR grad) - In Plagiocephaly , " risa silverman " <risathenurse@c...> wrote: > hello all, just wanted to say hello, and tell everyone that we just came from seeing dry stelnicki for Zachary's follow-up. he measured, and evaluated, and said that Zachary's ears and ears are perfectly symmetrical now, and that while he still has one little flat area, he expects that to pop up shortly, he made me feel that area, and showed me how it will come up, again in little popcorn bumps, just like the rest..he told me he was officially kicking us out of his office, and that we dodged the bullet, and what a fine job we have done with Zach. HE ALSO SAID WE CAN CONSIDER ZACH A REPO SUCCESS....YEAHHHH ZACHY..he is now a crawling, cruising 8 months old, who is almost never on his back, so I am truly a happy camper right now, thank you all so much for the support and great ideas on repoing...-risa > Risa-mother to: > 2/20/98 > Zachary 6/18/03 > husband-Larry 9/17/95 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Risa, I'm new to the group but thrilled to hear about your success with Zach. We're currently doing a trial of repo, so it's great to hear about a success story! I'd love to hear about when you started, what you did, etc. Again, congratulations!! Mom to Nate (4.5 months) > hello all, just wanted to say hello, and tell everyone that we just came from seeing dry stelnicki for Zachary's follow-up. he measured, and evaluated, and said that Zachary's ears and ears are perfectly symmetrical now, and that while he still has one little flat area, he expects that to pop up shortly, he made me feel that area, and showed me how it will come up, again in little popcorn bumps, just like the rest..he told me he was officially kicking us out of his office, and that we dodged the bullet, and what a fine job we have done with Zach. HE ALSO SAID WE CAN CONSIDER ZACH A REPO SUCCESS....YEAHHHH ZACHY..he is now a crawling, cruising 8 months old, who is almost never on his back, so I am truly a happy camper right now, thank you all so much for the support and great ideas on repoing...-risa > Risa-mother to: > 2/20/98 > Zachary 6/18/03 > husband-Larry 9/17/95 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 Amy, I am going......my son doesn't have a definitive diagnosis yet.....subclass deficiency, neutropenia issues and suspected NK cell defect.....Am awaiting a second opinion in Cincinnatti......Where do you live???? I can email you privately re where staying and if you want to get together....I fly in on Wed and out Sun Am. Am coming solo.....I live in ND. Talk to you later. Quoting Amy Junes <ajunes@...>: > > > > > > Dear MG > > I am so sorry for everything you and your son are going through. First I > > should start off and introduce myself since I am new to the group. My son > > is 5 years old (almost 6)and diagnosed with CVID after a two year sinus > > infection, cellulitis, that didn't improve no matter what the treatments. > > That was until we realized after a 8 day visit to Mayo Clinic that the > > reason he was so sick was because of a Primary immune disease, CVID IGG and > > subclass deficiency. He also has GERD, etc............ > > He started on monthly IVIG, then every three weeks, and last summer we had > > the choice to go to every two weeks or daily sub Q since he never had safe > > levels and was always getting sick right before his treatment was due. > > Since he got terrible side effects from the infusions such has joint pain, > > fatigue,illness, and headaches we opted for the daily IGG. It has been a > > life change. I have a close to normal son. He went from July to February > > with good IGG levels, no illness, no side effects besides injection site > > redness, constant IGG levels, no more peak and troughs! He also had no > > illnesses till February when he got pneumonia. When he is ill he needs the > > injections are twice a day for 14 days. He bounced back in three days, not > > a month like in the past and has been well since. He gains weight now, no > > longer borderline failure to thrive. He is hard to tell from his siblings > > and is my most healthy child. > > So any one with questions about sub Q injections feel free to ask, it has > > been a huge blessing for us. > > Our immunologist also told us he was at higher risk for blood and bone > > cancers, auto immune disorders, etc. and they check him every six months > > with a detailed physical and lab work. > > I try to take in each day with as much as we have to deal with and try not > > to worry about what else may appear, and I pray a lot. > > I am glad to be here, I wish there was no need for these groups and our > > families and loved ones could all be healthy, but since that isn't the > > reality, it is nice to have others to walk with down this road. > > I hope things get better for you and Zachary and that you can be comforted > > during this time. > > Take care > > Amy J > > PS > > Any one going to the National Primary Immune Deficency Foundations National > > Conference in Orlando this June? We are so excited to go. > > Zachary > > > > > > > > > >Zachary will go on Monday to get a g-tube inserted. I know at this point > > its the best thing for him, but I'm still having a difficult time dealing > > with it. He will have it placed by endoscopy and will be inpatient for about > > 3 days so the GI can get his feeds where she wants them to be. First he will > > have a tube, and the they will switch it out to a button in about 3 months. > > We are hoping this will help him put some weight, and build back some > > muscle. > > > > > >Zachary only has two days left of IV antibiotics left, and last night he > > was coughing and woke up today with his eyes swollen. With the attitude he > > has had today, I have a feeling we aren't beating this monster. With two > > weeks of vancomycin, and two weeks of rocephin, I think we need a visit to > > the ENT and sinus culture!! Another little sign of it being still there, is > > that after his dosage of med, his cheeks get nice and bright and red. I've > > seen this so many times before, but I'm trying very hard to deny that mommy > > instinct. I guess the good side of it, is that we will only have this > > weekend to worry about it, and then it can be taken care of by the drs next > > week. I hope! Different childrens hospitals...so it might be hard. > > > > > >Tomorrow I go to do the paperwork to do his hospital homebound info. I hope > > I'm not kidding myself, but I do have hopes that he will be able to return > > to school in August since he loves it so much. His immunologist told me > > that it may not be a option, but she will reevaluate him at the time. I'm > > praying the combination of the tube and the summer time will help build > > Zachary up enough so he can return. > > > > > >I also was shocked to hear that we will be doing periodical scans and blood > > testing for cancer with Zachary. They have lowered his flovent and rhinocort > > aqua dosages, and took him off elidel. She said he should not be on steriods > > unless its the only option. When I asked her why, she said that because of > > Zachary's situation, where he is now showing defects in his bone marrow, > > that we know have a higher risk of cancer and luekemia's. I know that this > > has been discussed on the list before, but I was under the impression that > > the risks of this were just a little higher with PID. I said that to the > > Immunologist, and she said that Zachary doesn't fall in the mold of the most > > common PID's. And we have to be very cautious with him. This has us worried. > > Its her opinion, and the opinion of the immunologists at the childrens > > hospital that we are dealing with more, and they ordered a battery of tests, > > along with chromosonal tests. Has anyone ever dealt with this kind of > > situation?? > > > > > >Well if you have gotten this far, thank you. ~MG (Relying only on Faith, > > and the Lord's Grace!!) & Zachary(5-7-99)monthly IVIG,IgG > > totaldeficiency,IgG1 & 4deficiency, IgA deficiency, suspected Pancreatic > > insufficency (adnormal tryspin test-treated with enzymes),Antibiody > > Dysfunction,Asthma,GERD,Chronic Sinus,Diarrhea and skin > > infections,FTT,Speechand Fine Motor Delays,central apnea,hypoapnea,bowel and > > urineincontience, and way too much more..... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 Amy, I am going......my son doesn't have a definitive diagnosis yet.....subclass deficiency, neutropenia issues and suspected NK cell defect.....Am awaiting a second opinion in Cincinnatti......Where do you live???? I can email you privately re where staying and if you want to get together....I fly in on Wed and out Sun Am. Am coming solo.....I live in ND. Talk to you later. Quoting Amy Junes <ajunes@...>: > > > > > > Dear MG > > I am so sorry for everything you and your son are going through. First I > > should start off and introduce myself since I am new to the group. My son > > is 5 years old (almost 6)and diagnosed with CVID after a two year sinus > > infection, cellulitis, that didn't improve no matter what the treatments. > > That was until we realized after a 8 day visit to Mayo Clinic that the > > reason he was so sick was because of a Primary immune disease, CVID IGG and > > subclass deficiency. He also has GERD, etc............ > > He started on monthly IVIG, then every three weeks, and last summer we had > > the choice to go to every two weeks or daily sub Q since he never had safe > > levels and was always getting sick right before his treatment was due. > > Since he got terrible side effects from the infusions such has joint pain, > > fatigue,illness, and headaches we opted for the daily IGG. It has been a > > life change. I have a close to normal son. He went from July to February > > with good IGG levels, no illness, no side effects besides injection site > > redness, constant IGG levels, no more peak and troughs! He also had no > > illnesses till February when he got pneumonia. When he is ill he needs the > > injections are twice a day for 14 days. He bounced back in three days, not > > a month like in the past and has been well since. He gains weight now, no > > longer borderline failure to thrive. He is hard to tell from his siblings > > and is my most healthy child. > > So any one with questions about sub Q injections feel free to ask, it has > > been a huge blessing for us. > > Our immunologist also told us he was at higher risk for blood and bone > > cancers, auto immune disorders, etc. and they check him every six months > > with a detailed physical and lab work. > > I try to take in each day with as much as we have to deal with and try not > > to worry about what else may appear, and I pray a lot. > > I am glad to be here, I wish there was no need for these groups and our > > families and loved ones could all be healthy, but since that isn't the > > reality, it is nice to have others to walk with down this road. > > I hope things get better for you and Zachary and that you can be comforted > > during this time. > > Take care > > Amy J > > PS > > Any one going to the National Primary Immune Deficency Foundations National > > Conference in Orlando this June? We are so excited to go. > > Zachary > > > > > > > > > >Zachary will go on Monday to get a g-tube inserted. I know at this point > > its the best thing for him, but I'm still having a difficult time dealing > > with it. He will have it placed by endoscopy and will be inpatient for about > > 3 days so the GI can get his feeds where she wants them to be. First he will > > have a tube, and the they will switch it out to a button in about 3 months. > > We are hoping this will help him put some weight, and build back some > > muscle. > > > > > >Zachary only has two days left of IV antibiotics left, and last night he > > was coughing and woke up today with his eyes swollen. With the attitude he > > has had today, I have a feeling we aren't beating this monster. With two > > weeks of vancomycin, and two weeks of rocephin, I think we need a visit to > > the ENT and sinus culture!! Another little sign of it being still there, is > > that after his dosage of med, his cheeks get nice and bright and red. I've > > seen this so many times before, but I'm trying very hard to deny that mommy > > instinct. I guess the good side of it, is that we will only have this > > weekend to worry about it, and then it can be taken care of by the drs next > > week. I hope! Different childrens hospitals...so it might be hard. > > > > > >Tomorrow I go to do the paperwork to do his hospital homebound info. I hope > > I'm not kidding myself, but I do have hopes that he will be able to return > > to school in August since he loves it so much. His immunologist told me > > that it may not be a option, but she will reevaluate him at the time. I'm > > praying the combination of the tube and the summer time will help build > > Zachary up enough so he can return. > > > > > >I also was shocked to hear that we will be doing periodical scans and blood > > testing for cancer with Zachary. They have lowered his flovent and rhinocort > > aqua dosages, and took him off elidel. She said he should not be on steriods > > unless its the only option. When I asked her why, she said that because of > > Zachary's situation, where he is now showing defects in his bone marrow, > > that we know have a higher risk of cancer and luekemia's. I know that this > > has been discussed on the list before, but I was under the impression that > > the risks of this were just a little higher with PID. I said that to the > > Immunologist, and she said that Zachary doesn't fall in the mold of the most > > common PID's. And we have to be very cautious with him. This has us worried. > > Its her opinion, and the opinion of the immunologists at the childrens > > hospital that we are dealing with more, and they ordered a battery of tests, > > along with chromosonal tests. Has anyone ever dealt with this kind of > > situation?? > > > > > >Well if you have gotten this far, thank you. ~MG (Relying only on Faith, > > and the Lord's Grace!!) & Zachary(5-7-99)monthly IVIG,IgG > > totaldeficiency,IgG1 & 4deficiency, IgA deficiency, suspected Pancreatic > > insufficency (adnormal tryspin test-treated with enzymes),Antibiody > > Dysfunction,Asthma,GERD,Chronic Sinus,Diarrhea and skin > > infections,FTT,Speechand Fine Motor Delays,central apnea,hypoapnea,bowel and > > urineincontience, and way too much more..... > > > > > > Quote Link to comment Share on other sites More sharing options...
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