Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 In a message dated 5/10/2004 10:24:47 PM Eastern Daylight Time, pmork@... writes: I think her negative thoughts were true reflections of how bad she felt all the time. Oh, I'm sure it was. Poor baby. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2004 Report Share Posted November 14, 2004 In a message dated 11/14/2004 12:36:47 AM Eastern Standard Time, lmschatz@... writes: I don't care anymore...He's my son and I want what is best for him. THANKS for you SUPPORT!!!!!!!!! You did the right thing! You did what was best! Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 In a message dated 11/13/2004 11:36:47 PM Central Standard Time, lmschatz@... writes: > they were miffed that I went > > over their heads. I don't care anymore...He's my son and I want what is > best > > for him. THANKS for you SUPPORT!!!!!!!!! > When you're facing something that can cause permanent damage to the eye, you would have to be insane to sit back and wait just because the docs didn't want you going " over their heads " !!!!!!!! Too bad for them!!!!!!!!! Only you have your son's best interests truly at heart, and you have the God-given Mommy Radar to let you know when to " go over heads " or when to sit back and hope someone else knows FOR SURE there won't be any permanent repercussions to waiting. GOOD FOR YOU. Sometimes you just gotta step on some toes. If I was really truly concerned about burning a bridge, I might make an excuse for going over someone's head like, " I know you said we could wait but my husband (or MIL or mom or someone) was driving me insane with their worry, they were not going to sleep or let me rest unless I got it looked at immediately, they were just not taking my word for it!!!! " All said with a smile and apologetic tilt and shrug. You certainly don't have to apologize for caring about your son's care, but then again, you catch more flies with honey than with vinegar!!! No excuses necessary of course, if they simply dropped the ball. (mom to , age 5-1/2, dairy intolerant-related GERD -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs... and also to Kate, born 9/19/02, dairy intolerant) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 That's exactly what I did when I talked to the ped. Warren did have a herpes inf in his eye a couple of years ago and was told if left untreated could cause blindness...They seemed to accept that and when we saw Dr. F today, I again apologized for calling him and he said I was right to be worried. Guess I'm not so dumb after all. " I know you said we could wait but my husband was driving me insane with their worry, they were not going to sleep or let me rest unless I got it looked at immediately, they were just not taking my word for it!!!! " All said with a smile and apologetic tilt and shrug. You certainly don't have to apologize for caring about your son's care, but then again, you catch more flies with honey than with vinegar!!! No excuses necessary of course, if they simply dropped the ball. (mom to , age 5-1/2, dairy intolerant-related GERD -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs... and also to Kate, born 9/19/02, dairy intolerant) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 That's exactly what I did when I talked to the ped. Warren did have a herpes inf in his eye a couple of years ago and was told if left untreated could cause blindness...They seemed to accept that and when we saw Dr. F today, I again apologized for calling him and he said I was right to be worried. Guess I'm not so dumb after all. " I know you said we could wait but my husband was driving me insane with their worry, they were not going to sleep or let me rest unless I got it looked at immediately, they were just not taking my word for it!!!! " All said with a smile and apologetic tilt and shrug. You certainly don't have to apologize for caring about your son's care, but then again, you catch more flies with honey than with vinegar!!! No excuses necessary of course, if they simply dropped the ball. (mom to , age 5-1/2, dairy intolerant-related GERD -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs... and also to Kate, born 9/19/02, dairy intolerant) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 In a message dated 11/15/2004 4:11:29 PM Central Standard Time, lmschatz@... writes: > Guess I'm not so dumb after all. > > Well, WE knew that, but sometimes I gotta wonder if some docs out there think anybody who gave birth automatically lost IQ points. (mom to , age 5-1/2, dairy intolerant-related GERD -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs... and also to Kate, born 9/19/02, dairy intolerant) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 In a message dated 11/15/2004 4:11:29 PM Central Standard Time, lmschatz@... writes: > Guess I'm not so dumb after all. > > Well, WE knew that, but sometimes I gotta wonder if some docs out there think anybody who gave birth automatically lost IQ points. (mom to , age 5-1/2, dairy intolerant-related GERD -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs... and also to Kate, born 9/19/02, dairy intolerant) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2004 Report Share Posted December 1, 2004 I heard a minute or two of Neil Boortz today and he was not very sensitive to Asperger's -- and you might imagine. C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2004 Report Share Posted December 1, 2004 I am not defending Neal but remember it is strictly his opinion. I have seen lots of posts about people upset with him over the last year and I understand. I do believe he says some of the things he says simply for the shock value. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 , Be careful with the insurance company. In our two hospitalization experiences, we had to be in close contact with them to be sure she was approved to stay the correct number of days. Our hospital was very expensive, as in $800 a day or so....so I'd just advise you to keep close tabs on the insurance situation. We had no social worker to do it; we had to do it ourselves. maralee update I wanted to thank everyone for their responses when I wrote about . Things finally came to a head on Mon., the school called mental health services because they were concerned about his behaviors. They in turn called me, telling me he needed to be evaluated. Well duh!!! That's what we've been trying to do for months now, but couldnt get him an appointment with the psychiatrist. We took him to a psychiatric hospital about an hour away, and they admitted him. It was very hard to leave Mike there, but I knew this was the best thing for him. My husband was against it, blaming himself for not spending enough time with Mike, he's had a hard time dealing with this. They said Mike would be in for 7-14 days, and I was on the phone all day yesterday with differant agencies calling to say they would help in any way they could. Where were they before this happened?? If they would have helped before, maybe it wouldnt have come to this. Now the insurance agency called and said Mike doesnt meet their " qualifications " to be in the hospital and were talking about releasing him. I called the social worker, and he said the psychiatrist would prob. override the decision, their trying him out on meds and want to keep an eye on him. The social worker was also upset that the insurance co. even bothered us, he said they should be contacting him. So as of right now, I don't know what the hecks going on, we're going to see Mike tonight, hopefully they can let us know something. I'm so tired of getting the run around about this. All I want is for my son to feel better about himself so he can come home and not worry about him being discharged and going back to square one. Thanks again, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 ---Does the hospital let you know when the insurance won't pay anymore? I don't want to have the hospital keep Mike, not say anything, and then get zapped with a bill. In Autism and Aspergers Treatment , " Maralee " <mparker72@w...> wrote: > , Be careful with the insurance company. In our two hospitalization > experiences, we had to be in close contact with them to be sure she was > approved to stay the correct number of days. Our hospital was very > expensive, as in $800 a day or so....so I'd just advise you to keep close > tabs on the insurance situation. We had no social worker to do it; we had to > do it ourselves. > maralee > > update > > > > > I wanted to thank everyone for their responses when I wrote about > . Things finally came to a head on Mon., the school called > mental health services because they were concerned about his > behaviors. They in turn called me, telling me he needed to be > evaluated. Well duh!!! That's what we've been trying to do for months > now, but couldnt get him an appointment with the psychiatrist. We > took him to a psychiatric hospital about an hour away, and they > admitted him. It was very hard to leave Mike there, but I knew this > was the best thing for him. My husband was against it, blaming > himself for not spending enough time with Mike, he's had a hard time > dealing with this. They said Mike would be in for 7-14 days, and I > was on the phone all day yesterday with differant agencies calling to > say they would help in any way they could. Where were they before > this happened?? If they would have helped before, maybe it wouldnt > have come to this. Now the insurance agency called and said Mike > doesnt meet their " qualifications " to be in the hospital and were > talking about releasing him. I called the social worker, and he said > the psychiatrist would prob. override the decision, their trying him > out on meds and want to keep an eye on him. The social worker was > also upset that the insurance co. even bothered us, he said they > should be contacting him. So as of right now, I don't know what the > hecks going on, we're going to see Mike tonight, hopefully they can > let us know something. I'm so tired of getting the run around about > this. All I want is for my son to feel better about himself so he can > come home and not worry about him being discharged and going back to > square one. Thanks again, > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2005 Report Share Posted February 10, 2005 Yes, they usually do. But I'd stay on top of it myself if I were you. Maybe you could ask the social worker at the hospital what the process is...our dr tells us " she was preapproved for 3 days " or whatever. Then they have to go back and check again after that time to see if it can be lengthened if need be. They are VERY structured about it. How's it going...? maralee update > > > > > I wanted to thank everyone for their responses when I wrote about > . Things finally came to a head on Mon., the school called > mental health services because they were concerned about his > behaviors. They in turn called me, telling me he needed to be > evaluated. Well duh!!! That's what we've been trying to do for months > now, but couldnt get him an appointment with the psychiatrist. We > took him to a psychiatric hospital about an hour away, and they > admitted him. It was very hard to leave Mike there, but I knew this > was the best thing for him. My husband was against it, blaming > himself for not spending enough time with Mike, he's had a hard time > dealing with this. They said Mike would be in for 7-14 days, and I > was on the phone all day yesterday with differant agencies calling to > say they would help in any way they could. Where were they before > this happened?? If they would have helped before, maybe it wouldnt > have come to this. Now the insurance agency called and said Mike > doesnt meet their " qualifications " to be in the hospital and were > talking about releasing him. I called the social worker, and he said > the psychiatrist would prob. override the decision, their trying him > out on meds and want to keep an eye on him. The social worker was > also upset that the insurance co. even bothered us, he said they > should be contacting him. So as of right now, I don't know what the > hecks going on, we're going to see Mike tonight, hopefully they can > let us know something. I'm so tired of getting the run around about > this. All I want is for my son to feel better about himself so he can > come home and not worry about him being discharged and going back to > square one. Thanks again, > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2005 Report Share Posted April 6, 2005 Kathleen, I am glad to hear that Conan is doing well...I am so glad that life has improved for Conan - and I hope that only continues! Best wishes and lots of hugs Stefani and Will Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 In a message dated 4/6/2005 7:34:09 P.M. Eastern Daylight Time, kkrt1@... writes: our quality of life has greatly improved..90% That is great news! That's a happy update. =) Janet, Mom to Brittany, CVID, age 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 In a message dated 4/6/2005 7:34:09 P.M. Eastern Daylight Time, kkrt1@... writes: our quality of life has greatly improved..90% That is great news! That's a happy update. =) Janet, Mom to Brittany, CVID, age 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 > Kathleen, > I am glad to hear that Conan is doing well...I am so glad that life has > improved for Conan - and I hope that only continues! > Best wishes and lots of hugs > Stefani and Will > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Kathleen, I am thrilled that Conan has come as far as he has in these 6 months! I hope he continues with his progress. Is he still able to tolerate all foods okay? Been thinking of you guys. Amy, mom to , 2 years old, CVID, asthma, GERD, on prophalatic abx (rotating Septra and Amoxicillin) and IVIG (Carimune NF) every 4 weeks, flovent, xopenex, albuterol and claritin. Allergic to latex.. among other things. Visit Nick's Caringbridge site at http://www3.caringbridge.org/ne/nicholasb/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Thanks so much, we have had little things, a lot of allergies still, but you know what some days are great, and I enjoy him.... and he enjoys me... I feel that is a huge improvemnet.. food is an issue, as well as GI stuff, and now the damn sun gives him a rash... but He is happy, and laughs.. I hadnt had one picture of him smiling since birth until recently... I feel blessed at this point... I know there might be some downs... that is ok. cause I know what can be..... I have kept him isolated until a month ago, no going to stores, play dates, etc... and of course now he has a chronic cold..... but that is better than the constant screaming....... OK enough about me, how are you guys doing? are you going back to sub Q? did you get approved for the port? how are you doing?? and the rest of your kids.... Re: Re: Update Kathleen, I am thrilled that Conan has come as far as he has in these 6 months! I hope he continues with his progress. Is he still able to tolerate all foods okay? Been thinking of you guys. Amy, mom to , 2 years old, CVID, asthma, GERD, on prophalatic abx (rotating Septra and Amoxicillin) and IVIG (Carimune NF) every 4 weeks, flovent, xopenex, albuterol and claritin. Allergic to latex.. among other things. Visit Nick's Caringbridge site at http://www3.caringbridge.org/ne/nicholasb/<http://www3.caringbridge.org/ne/nicho\ lasb/> 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. To unsubscribe -unsubscribe@groups<mailto:-unsubscribe@groups>. To search group archives go to: /messages<PedP\ ID/messages> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Thanks so much, we have had little things, a lot of allergies still, but you know what some days are great, and I enjoy him.... and he enjoys me... I feel that is a huge improvemnet.. food is an issue, as well as GI stuff, and now the damn sun gives him a rash... but He is happy, and laughs.. I hadnt had one picture of him smiling since birth until recently... I feel blessed at this point... I know there might be some downs... that is ok. cause I know what can be..... I have kept him isolated until a month ago, no going to stores, play dates, etc... and of course now he has a chronic cold..... but that is better than the constant screaming....... OK enough about me, how are you guys doing? are you going back to sub Q? did you get approved for the port? how are you doing?? and the rest of your kids.... Re: Re: Update Kathleen, I am thrilled that Conan has come as far as he has in these 6 months! I hope he continues with his progress. Is he still able to tolerate all foods okay? Been thinking of you guys. Amy, mom to , 2 years old, CVID, asthma, GERD, on prophalatic abx (rotating Septra and Amoxicillin) and IVIG (Carimune NF) every 4 weeks, flovent, xopenex, albuterol and claritin. Allergic to latex.. among other things. Visit Nick's Caringbridge site at http://www3.caringbridge.org/ne/nicholasb/<http://www3.caringbridge.org/ne/nicho\ lasb/> 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. To unsubscribe -unsubscribe@groups<mailto:-unsubscribe@groups>. To search group archives go to: /messages<PedP\ ID/messages> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Kathleen, Thanks for asking. has been better. We had a great winter and so far this spring he has had a horrible sinus infection/double ear infection, then last week he had pneumonia. We did get approved for the port and then the immuno talked me out of it. We are starting home subQ next week. So that should be interesting. My other two kids are doing well. Noah is just being a typical 6 year old boy! Kayla is doing great, no seizures since Dec 19th and her school work is looking wonderful. I just found out I am severely allergic to dust mites and have to go in for weekly allergy shots.. it never ends around here. Ugh, Oh well I guess it could have been worse. Take care Kathleen. Are you still moving? Have you figured out where? Amy Re: Re: Update > > Thanks so much, we have had little things, a lot of allergies still, but > you know what some days are great, and I enjoy him.... and he enjoys > me... I feel that is a huge improvemnet.. food is an issue, as well as GI > stuff, and now the damn sun gives him a rash... but He is happy, and > laughs.. I hadnt had one picture of him smiling since birth until > recently... I feel blessed at this point... I know there might be some > downs... that is ok. cause I know what can be..... I have kept him > isolated until a month ago, no going to stores, play dates, etc... and of > course now he has a chronic cold..... but that is better than the constant > screaming....... OK enough about me, how are you guys doing? are you going > back to sub Q? did you get approved for the port? how are you doing?? and > the rest of your kids.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Kathleen, Thanks for asking. has been better. We had a great winter and so far this spring he has had a horrible sinus infection/double ear infection, then last week he had pneumonia. We did get approved for the port and then the immuno talked me out of it. We are starting home subQ next week. So that should be interesting. My other two kids are doing well. Noah is just being a typical 6 year old boy! Kayla is doing great, no seizures since Dec 19th and her school work is looking wonderful. I just found out I am severely allergic to dust mites and have to go in for weekly allergy shots.. it never ends around here. Ugh, Oh well I guess it could have been worse. Take care Kathleen. Are you still moving? Have you figured out where? Amy Re: Re: Update > > Thanks so much, we have had little things, a lot of allergies still, but > you know what some days are great, and I enjoy him.... and he enjoys > me... I feel that is a huge improvemnet.. food is an issue, as well as GI > stuff, and now the damn sun gives him a rash... but He is happy, and > laughs.. I hadnt had one picture of him smiling since birth until > recently... I feel blessed at this point... I know there might be some > downs... that is ok. cause I know what can be..... I have kept him > isolated until a month ago, no going to stores, play dates, etc... and of > course now he has a chronic cold..... but that is better than the constant > screaming....... OK enough about me, how are you guys doing? are you going > back to sub Q? did you get approved for the port? how are you doing?? and > the rest of your kids.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 In a message dated 4/6/2005 4:34:09 PM Pacific Standard Time, kkrt1@... writes: he has not been really sick like he used to be.... Kathleen, Thanks for sharing your excellent news!! Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve transplant (2003), asthma, Carnitine deficiency, GERD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2005 Report Share Posted July 26, 2005 - I just wanted to mention, two similarities with your son. First though, let me just say you are a step ahead in the fact that he was even willing to give the job a try! Kudos to him for that. The similarities - the eye blinking - My son started this back in second grade. He was diagnosed shortly thereafter with Tourette's (not just because of the eye blinking, there were other symptoms and history dating back). He described the eye blinking as just something that he " felt " he had to do. The other similarity was his picking up on your frustrated " tone. " This has been a major, consistent problem with my son through the years. Unless you speak even-toned or monotone in his presence he interprets any rise in voice as being " mad or ticked off " at him. I must admit, this is a little better since he has been on the Zoloft, but it's still present from time to time. For instance, a while back if he were in another room and I had to raise my voice just to call him, he interpreted this rise in my voice as being mad at him. If I'm calling my husband who might be out in the yard and raising my voice to get his attention, he (my son) automatically assumes I'm " mad " at dad and causes discomfort for my son. Just wanted to share. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2005 Report Share Posted July 26, 2005 He then asked if he was just a pain to have around. Aww, , breaks my heart too! Well, he knows that his OCD is a " pain " , it's just hard to separate it from himself; and then they (and us parents) get frustrated as they listen to/follow OCD's instructions. I used to joke with sometimes back when he would get frustrated and hit himself in the head due to OCD, " here, let ME do that! I'm fed up with OCD too! " and smile/laugh, and we'd wish it were that simple to knock it all away! (Although I would also tell him that I wasn't going to allow that, his hitting himself, or pinching, and would hold lightly his arm when I had to.) Does he have a certain time limit to get the mowing done? Maybe saying, " no problem, you have til bedtime tonite; if it's not done, come back tomorrow " or something might help. Tell him that's what I do, mow all the yard (front, back, sides, roadside...) and then walk around to see what foot-tall weed(s) I missed! went thru a period of some facial things. I wondered if it was OCD or tics beginning. It ended though. Well, give your fella a hug from me! > Hi. We finally will get to see our doctor in 3 more weeks. I sure > wish we could see him right away. Our son didn't get any better > being away from school as we had hoped. At least it's been one less > thing to deal with though. Over the last week he has accually got > worse. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2005 Report Share Posted October 6, 2005 I think your plan is sound. Sounds like the Indian doc can’t really take good care of you anyway. Try the programs they have & see how it goes. De Update Hey hope everyone is well. I have been doing some thinking.So I guess I wanted to use you all as a sounding board for my plans. As most of you may know I dont have any insurance. That tends to make it a lil bit diffucult to find a Dr that wants to give his services away free of charge. Cant even say I blame them. I was sopposed to go see my dr tomorrow for my every three month check up. My dr is at an Indian clinic in okla. Because I live in Texas there are a lot of things they dont do. So I am changing Drs. I spoke to the University of Tex at Tyler, they have programs that will allow me to be seen. I am having alot more problems and there is nothing my current dr can really do until he runs some tests. The tests happen to be in the group of things they cant do do unless Im an Okla resident. I am not very fond of the limbo game..lol. At least not when my health is involved. Well I guess that is the general idea of my plans. Im tired of being sick. As Im sure many of you can understand. love hugs and prayers d Quote Link to comment Share on other sites More sharing options...
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