Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Can she not do Medical Homebound. The Dr. can fill out a Medical Homebound form for the school district. With Blake we were able to get teh school psychologist to talk to Blake's Dr. An IEP(some call it a 504 plan) was put into place & he receives special services uner the " Other Health Impairment " status. When we decided this was best for Blake, he was in 3rd grade. School had only been in for 7 days. He lasted 3 days at school, wound up in PICU with a bacterial infection that started out as a " minor cold " . In 3 days time it progressed & his lung had collasped!!!! Just a suggestion I do know the IDF can help by giving you some info to hadn out at the school as well!!! mom to Blake SCID with Complete T-Cell Dysfunction http://www3.caringbridge.org/sc/blakester " Children are like butterflies in the wind. Some fly higher than others, BUT each one flies the best they can!!!! " From: <bluetaelon@...> Subject: Your thoughts please? Date: Tuesday, October 28, 2008, 8:52 PM I just talked to the school about 's absences. School has been in session 49 days and she's been absent 14 days due to illness (I don't know if that accounts for missing Friday last week and yesterday and today for the stomach flu) and tardy 12 days. She's been sleeping 12-15 hours a day since starting school and she is dead to the world when she has those days and its pointless to even try waking her up. She just NEEDS the sleep. That leaves 23 days where she was not absent or tardy (she misses half the day due to sleeping when tardy she's asleep between 8-9pm and needs to be at school at 9am but doesn't wake up until 10-11am). I've pulled her from PE and any activities that burns a lot of calories since she had started losing weight which was causing access issues for SCIG since she's already rail thin and that helped a lot with the sleeping issue but on the days where its ignored.. she sleeps 12-15 hours. She's already sleeping 9pm to 8am on good days and that's dragging her out of bed. Before I enrolled her in school she would sleep about 8 hours a night and be fine. She LOVES school. I'm also hesitating on pulling her because she LOVES the after school academic enrichment program which is about 2 hours a day. I just called to find out if she would still be able to attend if I switched her to an out of district public school and learned that no she wouldn't but its a moot point because she's getting kicked out in Dec because they misunderstood there grant and thought it was for all district kids when it fact it was limited to kids at that school site which she doesn't attend anyway so all the kids who don't attend that school are getting kicked from the program in Dec. (giving the parents 2 months to find other childcare options since it runs until 6pm like daycare) I know I am teetering on a truancy officer showing up so I am worried about that. My concern is that age old argument of socialization. We HS'd for 3 years, the only support here for HS'er is if your far right wing religious homeschoolers which we are not (were not even Christian which makes it even harder to get accepted) so there's no chance of joining either of the 2 HS'ing groups. The one group we mesh with is an hour away and the gas money to go every week is just not in the budget plus outside of the park days there we would have to fork over money for activities. So we'd be facing social Siberia again. I mean there's story time at the library 1x a week but that's hardly enough for the super social kid and I can't afford other classes like dance or what ever. There are neighborhood kids but I do not want her playing with them (which is why I put her in the afterschool program to limit her exposure to those kids), they literally represent all the reasons someone would want to homeschool. Horrible kids! So, what would you do if you were in this situation? *who's losing her mind at the thought of going back to HS'ing and dealing with fighting kids ALL DAY LONG, not to mention getting school work done 8 CVID Lilly 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 -- I know I had to fight and fight for my kids to get their 504's this year. I finally got them, and now, like you, my youngest has already missed 14 days of school in the first semester. And my oldest had missed 10. (in a 9wk semester, so however many days that is) and the Dr did the homebound thing for us. Filled out the paperwork no problem. I just had my meeting today for my middle schooler, had my meeting for my elementary schooler yesterday. I do realize it's a LOT of work for me, b/c they will be here (and I work from home) but it's a sacrafice I am going to have to make work since their health is dependent on it right now. I can't risk them going to school just to get more and more infections and we aren't on any treatments as of yet, other than prophalatic antibiotics. So .... I know it's going to be hard for me too, b/c I have boys, and they LOVE to fight. I feel your pain there!! But maybe you can make something work. Hopefully you have a good ped and/or Dr who would be willing to fill the paperwork out for you!!! That'd be the best route to go in order to get the hospital/homebound. That way the school system is still responsible for coming to you and bringing you their work, and teaching the kids every week. You have to make sure they do it, and it's not the same as being in a class, but ... still ... ultimately, the school is responsible. I hope you find something that works for you soon!! It's tough being a mom sometimes!! or just a grown up period!! Deska mom to Phoenix -- 11 hypogamma; possible CVID, asthma, allergies, migraines Jayden -- 7 hypogamma; possible CVID, asthma, reflux, heart murmur, migraines ________________________________ From: s <momtoboywholoveshisgoats@...> Sent: Tuesday, October 28, 2008 9:37:26 PM Subject: Re: Your thoughts please? Can she not do Medical Homebound. The Dr. can fill out a Medical Homebound form for the school district. With Blake we were able to get teh school psychologist to talk to Blake's Dr. An IEP(some call it a 504 plan) was put into place & he receives special services uner the " Other Health Impairment " status. When we decided this was best for Blake, he was in 3rd grade. School had only been in for 7 days. He lasted 3 days at school, wound up in PICU with a bacterial infection that started out as a " minor cold " . In 3 days time it progressed & his lung had collasped!!! ! Just a suggestion I do know the IDF can help by giving you some info to hadn out at the school as well!!! mom to Blake SCID with Complete T-Cell Dysfunction http://www3. caringbridge. org/sc/blakester " Children are like butterflies in the wind. Some fly higher than others, BUT each one flies the best they can!!!! " From: <bluetaelonatt (DOT) net> Subject: Your thoughts please? groups (DOT) com Date: Tuesday, October 28, 2008, 8:52 PM I just talked to the school about 's absences. School has been in session 49 days and she's been absent 14 days due to illness (I don't know if that accounts for missing Friday last week and yesterday and today for the stomach flu) and tardy 12 days. She's been sleeping 12-15 hours a day since starting school and she is dead to the world when she has those days and its pointless to even try waking her up. She just NEEDS the sleep. That leaves 23 days where she was not absent or tardy (she misses half the day due to sleeping when tardy she's asleep between 8-9pm and needs to be at school at 9am but doesn't wake up until 10-11am). I've pulled her from PE and any activities that burns a lot of calories since she had started losing weight which was causing access issues for SCIG since she's already rail thin and that helped a lot with the sleeping issue but on the days where its ignored.. she sleeps 12-15 hours. She's already sleeping 9pm to 8am on good days and that's dragging her out of bed. Before I enrolled her in school she would sleep about 8 hours a night and be fine. She LOVES school. I'm also hesitating on pulling her because she LOVES the after school academic enrichment program which is about 2 hours a day. I just called to find out if she would still be able to attend if I switched her to an out of district public school and learned that no she wouldn't but its a moot point because she's getting kicked out in Dec because they misunderstood there grant and thought it was for all district kids when it fact it was limited to kids at that school site which she doesn't attend anyway so all the kids who don't attend that school are getting kicked from the program in Dec. (giving the parents 2 months to find other childcare options since it runs until 6pm like daycare) I know I am teetering on a truancy officer showing up so I am worried about that. My concern is that age old argument of socialization. We HS'd for 3 years, the only support here for HS'er is if your far right wing religious homeschoolers which we are not (were not even Christian which makes it even harder to get accepted) so there's no chance of joining either of the 2 HS'ing groups. The one group we mesh with is an hour away and the gas money to go every week is just not in the budget plus outside of the park days there we would have to fork over money for activities. So we'd be facing social Siberia again. I mean there's story time at the library 1x a week but that's hardly enough for the super social kid and I can't afford other classes like dance or what ever. There are neighborhood kids but I do not want her playing with them (which is why I put her in the afterschool program to limit her exposure to those kids), they literally represent all the reasons someone would want to homeschool. Horrible kids! So, what would you do if you were in this situation? *who's losing her mind at the thought of going back to HS'ing and dealing with fighting kids ALL DAY LONG, not to mention getting school work done 8 CVID Lilly 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 My son has had an abbreviated schedule when he has needed it. He would go in at 10 and be done when he could. So some days it was 2 and other days 3:30. the school can make these accomadations and especially if you can get a letter from the doctor asking for a reduced school day. She clearly is not doing well right now and it is not a good idea to continue stressing her until she gets her immune system up and running. I would also wonder if she is getting an adequate dose of Gamma Globulin. My son has a great deal of fatigue when his does was too low. Has she had levels drawn recently? My sons levels have to be over 900 for him to stay well. It is different for each kid. BARBIE ________________________________ From: <bluetaelon@...> Sent: Tuesday, October 28, 2008 7:52:48 PM Subject: Your thoughts please? I just talked to the school about 's absences. School has been in session 49 days and she's been absent 14 days due to illness (I don't know if that accounts for missing Friday last week and yesterday and today for the stomach flu) and tardy 12 days. She's been sleeping 12-15 hours a day since starting school and she is dead to the world when she has those days and its pointless to even try waking her up. She just NEEDS the sleep. That leaves 23 days where she was not absent or tardy (she misses half the day due to sleeping when tardy she's asleep between 8-9pm and needs to be at school at 9am but doesn't wake up until 10-11am). I've pulled her from PE and any activities that burns a lot of calories since she had started losing weight which was causing access issues for SCIG since she's already rail thin and that helped a lot with the sleeping issue but on the days where its ignored.. she sleeps 12-15 hours. She's already sleeping 9pm to 8am on good days and that's dragging her out of bed. Before I enrolled her in school she would sleep about 8 hours a night and be fine. She LOVES school. I'm also hesitating on pulling her because she LOVES the after school academic enrichment program which is about 2 hours a day. I just called to find out if she would still be able to attend if I switched her to an out of district public school and learned that no she wouldn't but its a moot point because she's getting kicked out in Dec because they misunderstood there grant and thought it was for all district kids when it fact it was limited to kids at that school site which she doesn't attend anyway so all the kids who don't attend that school are getting kicked from the program in Dec. (giving the parents 2 months to find other childcare options since it runs until 6pm like daycare) I know I am teetering on a truancy officer showing up so I am worried about that. My concern is that age old argument of socialization. We HS'd for 3 years, the only support here for HS'er is if your far right wing religious homeschoolers which we are not (were not even Christian which makes it even harder to get accepted) so there's no chance of joining either of the 2 HS'ing groups. The one group we mesh with is an hour away and the gas money to go every week is just not in the budget plus outside of the park days there we would have to fork over money for activities. So we'd be facing social Siberia again. I mean there's story time at the library 1x a week but that's hardly enough for the super social kid and I can't afford other classes like dance or what ever. There are neighborhood kids but I do not want her playing with them (which is why I put her in the afterschool program to limit her exposure to those kids), they literally represent all the reasons someone would want to homeschool. Horrible kids! So, what would you do if you were in this situation? *who's losing her mind at the thought of going back to HS'ing and dealing with fighting kids ALL DAY LONG, not to mention getting school work done 8 CVID Lilly 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 My sons are fine too but he just is overwhelmed by all the stuff going on in middle school. He wants to go to school but emotionally cannot handle it right now in his life. BARBIE ________________________________ From: <bluetaelon@...> Sent: Tuesday, October 28, 2008 11:08:06 PM Subject: Re: Your thoughts please? Levels were drawn Friday because that was our first thought. Results came back last night and her IgG was 1290 which is fine. She's been doing fantastic and was only sick like once in the past year I think until we put her into school. Re: Your thoughts please? > My son has had an abbreviated schedule when he has needed it. He would go > in at 10 and be done when he could. So some days it was 2 and other days > 3:30. the school can make these accomadations and especially if you can > get a letter from the doctor asking for a reduced school day. > She clearly is not doing well right now and it is not a good idea to > continue stressing her until she gets her immune system up and running. I > would also wonder if she is getting an adequate dose of Gamma Globulin. My > son has a great deal of fatigue when his does was too low. Has she had > levels drawn recently? My sons levels have to be over 900 for him to stay > well. It is different for each kid. > > BARBIE > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 The school has refused to do home bound and just wants to do independent study where they just send everything home and I teach it. I spent most of the day on the phone talking to the K12 virtual school people and I realized I have a LOT of issues with the school she attends right now. She is FAILING 3 out of the 5 subjects they teach. She is being expected to take tests on stuff that she missed and the teacher is not taking the time to do pull out and make sure she learns the material so she is being penalized for missed school with failing grades. I can not get them to give me the work she has missed or will miss until she returns to school so its rush rush rush to make up missed work and they don't tell me what they did orally so she misses a large part of the lessons. Her 504 does not address this issue and the school was unwilling to really address the PID issue beyond she won't be considered truant for missing school if I remember right. They wanted to focus on her food allergies rather then the PID issue even though I was stressing that the PID issue is what's going to cause all the headaches. I was also shocked to learn what she's actually learning in school, these are the subjects listed on her report card: Reading, Language Content, Language, Math, Spelling. (she's got barely D's and F's on the first 3. There not even teaching History or Science! Nevermind missing Art, Music or Foreign Language. The virtual school will provide Math, History, Science, Art, Language Arts and choice of either Music or Foreign Language of your choice (Spanish, French, German or Latin) supposedly they have a ton of activities for the kids to get together too. I have to call the local admin office tomorrow and I'm hoping to find out exactly what and when activities are offered. After spending several hours on the phone today the virtual school is looking better and better but the thought of having her at home all day every day again is... daunting.. Your thoughts please? > groups (DOT) com > Date: Tuesday, October 28, 2008, 8:52 PM > > I just talked to the school about 's absences. School has been in > session 49 days and she's been absent 14 days due to illness (I don't know > if that accounts for missing Friday last week and yesterday and today for > the stomach flu) and tardy 12 days. She's been sleeping 12-15 hours a day > since starting school and she is dead to the world when she has those days > and its pointless to even try waking her up. She just NEEDS the sleep. > That > leaves 23 days where she was not absent or tardy (she misses half the day > due to sleeping when tardy she's asleep between 8-9pm and needs to be at > school at 9am but doesn't wake up until 10-11am). I've pulled her from PE > and any activities that burns a lot of calories since she had started > losing > weight which was causing access issues for SCIG since she's already rail > thin and that helped a lot with the sleeping issue but on the days where > its > ignored.. she sleeps 12-15 hours. She's already sleeping 9pm to 8am on > good > days and that's dragging her out of bed. Before I enrolled her in school > she > would sleep about 8 hours a night and be fine. She LOVES school. > > I'm also hesitating on pulling her because she LOVES the after school > academic enrichment program which is about 2 hours a day. I just called to > find out if she would still be able to attend if I switched her to an out > of > district public school and learned that no she wouldn't but its a moot > point > because she's getting kicked out in Dec because they misunderstood there > grant and thought it was for all district kids when it fact it was limited > to kids at that school site which she doesn't attend anyway so all the > kids > who don't attend that school are getting kicked from the program in Dec. > (giving the parents 2 months to find other childcare options since it runs > until 6pm like daycare) > > I know I am teetering on a truancy officer showing up so I am worried > about > that. My concern is that age old argument of socialization. We HS'd for 3 > years, the only support here for HS'er is if your far right wing religious > homeschoolers which we are not (were not even Christian which makes it > even > harder to get accepted) so there's no chance of joining either of the 2 > HS'ing groups. The one group we mesh with is an hour away and the gas > money > to go every week is just not in the budget plus outside of the park days > there we would have to fork over money for activities. So we'd be facing > social Siberia again. I mean there's story time at the library 1x a week > but > that's hardly enough for the super social kid and I can't afford other > classes like dance or what ever. There are neighborhood kids but I do not > want her playing with them (which is why I put her in the afterschool > program to limit her exposure to those kids), they literally represent all > the reasons someone would want to homeschool. Horrible kids! > > So, what would you do if you were in this situation? > > *who's losing her mind at the thought of going back to HS'ing and > dealing with fighting kids ALL DAY LONG, not to mention getting school > work > done > 8 CVID > Lilly 2 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Levels were drawn Friday because that was our first thought. Results came back last night and her IgG was 1290 which is fine. She's been doing fantastic and was only sick like once in the past year I think until we put her into school. Re: Your thoughts please? > My son has had an abbreviated schedule when he has needed it. He would go > in at 10 and be done when he could. So some days it was 2 and other days > 3:30. the school can make these accomadations and especially if you can > get a letter from the doctor asking for a reduced school day. > She clearly is not doing well right now and it is not a good idea to > continue stressing her until she gets her immune system up and running. I > would also wonder if she is getting an adequate dose of Gamma Globulin. My > son has a great deal of fatigue when his does was too low. Has she had > levels drawn recently? My sons levels have to be over 900 for him to stay > well. It is different for each kid. > > BARBIE > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 I had the same problem with Lucas he went 3 mo with out ever eating lunch but the school did nothing. He was so overwhelmed by the cafeteria and the noise . He would come home and melt down everyday because he had not eaten and was so fried by the end of the afternoon. I could not believe that he did not see it as a concern. They MAKE kids eat breakfast but are not concerned if a kid with health problems and losing wt eats at all. If you can get the info from IDF for schools and nurses it might help to bridge the gap a bit. I think much of the time they are totally ignorant about what a PID really is and how it effects so much of the body. BARBIE ________________________________ From: <bluetaelon@...> Sent: Tuesday, October 28, 2008 11:42:54 PM Subject: Re: Your thoughts please? I was talking to someone earlier on the phone and she thinks maybe its just to much crap coming at her at once for her body to fend off so even though the levels are fine its just to much for her. That and the fact that school does make for a long day which is why she's exhausted. It would be nice to not have to go to the school 4x a day though... yes, 4! They refuse to make sure she eats her lunch so I have to go to the school at lunch, pick her up. bring her home, feed her then take her back because they can't be bothered to check that she actually ate her lunch (she doesn't, she's to busy gabbing) or better yet have her eat her lunch in the office or something. She was losing weight but yet they can't be bothered.. The school nurse couldn't figure out why a kid with blood sugar issues can't go from 8:30am to 3:30pm without eating and that her skipping eating at school was fine. ugh! Re: Your thoughts please? > >> My son has had an abbreviated schedule when he has needed it. He would >> go >> in at 10 and be done when he could. So some days it was 2 and other days >> 3:30. the school can make these accomadations and especially if you can >> get a letter from the doctor asking for a reduced school day. >> She clearly is not doing well right now and it is not a good idea to >> continue stressing her until she gets her immune system up and running. I >> would also wonder if she is getting an adequate dose of Gamma Globulin. >> My >> son has a great deal of fatigue when his does was too low. Has she had >> levels drawn recently? My sons levels have to be over 900 for him to stay >> well. It is different for each kid. >> >> BARBIE >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 That is exactly what happened with us. I finally started to give him a Balance Bar in the car and it made a huge difference. He would only eat 1/2 but it was plenty to get his sugars stable again. He to this day is a huge CARB eater but I have to constantly work with him to get enough protein. BARBIE ________________________________ From: <bluetaelon@...> Sent: Wednesday, October 29, 2008 12:31:19 AM Subject: Re: Your thoughts please? Exactly, by the time we get home she's in tears having a meltdown over really stupid stuff because her blood sugar is low but once she eats its fine but that first hour after school man... I'd rather pick her up at lunch then deal with low blood sugar tantrums. Re: Your thoughts please? >> >>> My son has had an abbreviated schedule when he has needed it. He would >>> go >>> in at 10 and be done when he could. So some days it was 2 and other days >>> 3:30. the school can make these accomadations and especially if you can >>> get a letter from the doctor asking for a reduced school day. >>> She clearly is not doing well right now and it is not a good idea to >>> continue stressing her until she gets her immune system up and running. >>> I >>> would also wonder if she is getting an adequate dose of Gamma Globulin. >>> My >>> son has a great deal of fatigue when his does was too low. Has she had >>> levels drawn recently? My sons levels have to be over 900 for him to >>> stay >>> well. It is different for each kid. >>> >>> BARBIE >>> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 I was talking to someone earlier on the phone and she thinks maybe its just to much crap coming at her at once for her body to fend off so even though the levels are fine its just to much for her. That and the fact that school does make for a long day which is why she's exhausted. It would be nice to not have to go to the school 4x a day though... yes, 4! They refuse to make sure she eats her lunch so I have to go to the school at lunch, pick her up. bring her home, feed her then take her back because they can't be bothered to check that she actually ate her lunch (she doesn't, she's to busy gabbing) or better yet have her eat her lunch in the office or something. She was losing weight but yet they can't be bothered.. The school nurse couldn't figure out why a kid with blood sugar issues can't go from 8:30am to 3:30pm without eating and that her skipping eating at school was fine. ugh! Re: Your thoughts please? > >> My son has had an abbreviated schedule when he has needed it. He would >> go >> in at 10 and be done when he could. So some days it was 2 and other days >> 3:30. the school can make these accomadations and especially if you can >> get a letter from the doctor asking for a reduced school day. >> She clearly is not doing well right now and it is not a good idea to >> continue stressing her until she gets her immune system up and running. I >> would also wonder if she is getting an adequate dose of Gamma Globulin. >> My >> son has a great deal of fatigue when his does was too low. Has she had >> levels drawn recently? My sons levels have to be over 900 for him to stay >> well. It is different for each kid. >> >> BARBIE >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 I would give her another day with all that you have said. I am interested in what you are saying about her other issues. Lucas had all kinds of GI problems when he was a baby. Bloody stools and could not tolerate ANY formula on the market. ( I adopted him when he was a newborn or otherwise I would have nursed him for sure. We end up making him a goats milk formula from nubian goats that was very carefully handled. He had blood in his stools and became FTT at 4mo and then again most of his 2's-5s. He has tantrummed most of his life. I mean for hours and hours per day. Even now he tantrums very easily over food. He has HORRIBLE gas all of the time. I took him to the GI doc about 6 months ago and he scoped him and everything looked good. Also did some RAST testing for food allergies but did not show much. He use to have terrible overall allergies with 4+++ on some things. But I am not sure how things test with the Gamma Globulin since it is altering his tests from what I know. He had Eosinophylic Gastroenteritits at 2mo and then we were told that he had H Pyloris but he was never treated. The reason I am saying all of this is that he is diagnosed Bipolar, ADD, ODD, Sensory Integration Issues, Depression, Severe Anxiety etc. But.... I think much of it is based no his nutrition. I have NEVER been able to get anyone to look at him about this because he put on a good deal of wt with prednisone and also some of the psychotropic meds he was on. OH yeah he is also very allergic to meds. He cannot take the Psych meds due to life threatening responses that cause his immune system to bottom out. Or his Blood Eosinophils alway increase exponentially when he is allergic to a med. My question is what are we missing that his causing some of his mental health issues. I am reading a good deal about nutrients and mental health issues and I know that blood sugar can be a big issue. He has had some wierd blood sugars but no one will listen to me about it. I just wish I had the money to get him to a Natropath/nutritionist that really knows what they are doing. Maybe at NIH or NIMH. I just feel we are missing something BIG. He is so irritable, angry agitated and then depressed, suicidal etc. I have taken him out of school and he seems to be settling down. He was kind of angry about it but also sees that he is beginning to feel better overall and so is not fighting me. I know he misses his friends so I am trying to make sure he has friend play times. I just want to help him, he is NOT autistic or Asbergers, he is very smart but has MAJOR mood swings and all day long. He hates the way he acts sometimes and tells me and then I have a Jekyl and Hyde on and on all day long. It is making me crazy. I just have to get him some more help somewhere. I am moving back to WA state next year because I will lose his Medicaid here in OK due to my income. Less than $25k per year. It is absurd with his bills being around 80k per year but they have no programs here in OK either for chronically ill kids or for mentally ill kids. LIFE IS SO HARD SOMETIMES. I am also disabled and single so it is a lot to carry sometimes. I guess I am having a Pity Party !!!! BARBIE ________________________________ From: <bluetaelon@...> Sent: Wednesday, October 29, 2008 12:45:28 AM Subject: Re: Your thoughts please? In our case she's suspected of having the same mito/metabolic issue the 2 yr old has. A little over a month ago I said screw it and took her off the high fat/carb diet the GI has wanted her on her whole life due to FTT issues and put her on the diet the 2 yr old is on which is a very low fat/high carb/restricted protein diet and her moods really stabilized almost immediately and she started eating 3 meals and 3 snacks a day without fuss and she started gaining weight which she hasn't done in ages. She's moody as heck right now since she's getting over a GI bug and still can't eat much. Gatorade only does so much with blood sugars. I'm debating on whether or not to send her back to school tomorrow, she's been up and playing all day but barely eating. I'm thinking I should wait until she's eating a normal diet again, what do you think? I had meant to call the pedi today but was busy with everything else going on I plum forgot to call. Re: Your thoughts please? >>> >>>> My son has had an abbreviated schedule when he has needed it. He would >>>> go >>>> in at 10 and be done when he could. So some days it was 2 and other >>>> days >>>> 3:30. the school can make these accomadations and especially if you can >>>> get a letter from the doctor asking for a reduced school day. >>>> She clearly is not doing well right now and it is not a good idea to >>>> continue stressing her until she gets her immune system up and running. >>>> I >>>> would also wonder if she is getting an adequate dose of Gamma Globulin. >>>> My >>>> son has a great deal of fatigue when his does was too low. Has she had >>>> levels drawn recently? My sons levels have to be over 900 for him to >>>> stay >>>> well. It is different for each kid. >>>> >>>> BARBIE >>>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Exactly, by the time we get home she's in tears having a meltdown over really stupid stuff because her blood sugar is low but once she eats its fine but that first hour after school man... I'd rather pick her up at lunch then deal with low blood sugar tantrums. Re: Your thoughts please? >> >>> My son has had an abbreviated schedule when he has needed it. He would >>> go >>> in at 10 and be done when he could. So some days it was 2 and other days >>> 3:30. the school can make these accomadations and especially if you can >>> get a letter from the doctor asking for a reduced school day. >>> She clearly is not doing well right now and it is not a good idea to >>> continue stressing her until she gets her immune system up and running. >>> I >>> would also wonder if she is getting an adequate dose of Gamma Globulin. >>> My >>> son has a great deal of fatigue when his does was too low. Has she had >>> levels drawn recently? My sons levels have to be over 900 for him to >>> stay >>> well. It is different for each kid. >>> >>> BARBIE >>> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 In our case she's suspected of having the same mito/metabolic issue the 2 yr old has. A little over a month ago I said screw it and took her off the high fat/carb diet the GI has wanted her on her whole life due to FTT issues and put her on the diet the 2 yr old is on which is a very low fat/high carb/restricted protein diet and her moods really stabilized almost immediately and she started eating 3 meals and 3 snacks a day without fuss and she started gaining weight which she hasn't done in ages. She's moody as heck right now since she's getting over a GI bug and still can't eat much. Gatorade only does so much with blood sugars. I'm debating on whether or not to send her back to school tomorrow, she's been up and playing all day but barely eating. I'm thinking I should wait until she's eating a normal diet again, what do you think? I had meant to call the pedi today but was busy with everything else going on I plum forgot to call. Re: Your thoughts please? >>> >>>> My son has had an abbreviated schedule when he has needed it. He would >>>> go >>>> in at 10 and be done when he could. So some days it was 2 and other >>>> days >>>> 3:30. the school can make these accomadations and especially if you can >>>> get a letter from the doctor asking for a reduced school day. >>>> She clearly is not doing well right now and it is not a good idea to >>>> continue stressing her until she gets her immune system up and running. >>>> I >>>> would also wonder if she is getting an adequate dose of Gamma Globulin. >>>> My >>>> son has a great deal of fatigue when his does was too low. Has she had >>>> levels drawn recently? My sons levels have to be over 900 for him to >>>> stay >>>> well. It is different for each kid. >>>> >>>> BARBIE >>>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 He tested + for EG? Was it treated? That takes YEARS to overcome and that's with intensive treatment. These kids are in a lot of pain so its no wonder they have behavior issues. At his age he may not realize he's in pain because for him that's normal. Another thing I would look at is Celiac disease, it can cause some serious mental health issues. When I've gotten gluten into my diet on a regular basis I become very depressed, severe anxiety and more then once suicidal. Its actually marked on the front of my folder that if I show up for treatment to check for gluten exposure because EVERY TIME I've had mental health issues it was due to gluten. Removed the source and I was fine within 30 days every time, I also have a jeckle and hyde type reaction that starts about 15 minutes after exposure and often I am not aware of it. dd reacts with extremely violent behavior to gluten and is a nightmare, if the exposure is prolonged she starts developing autistic type symptoms. We found we needed to go on the Feingold diet as well, I thought it was just dd that needed it but realized I needed it as well. Anyway, check out this group, great resource for EG! eosinophilgastro ps: fantastic resource on nutritional healing is the " Encyclopedia of natural medicine " by Murray and Pizzorno. I have used that to find a lot of nutritional deficiency issues then test though the Dr and its been right on every single time. Re: Your thoughts please? >>>> >>>>> My son has had an abbreviated schedule when he has needed it. He >>>>> would >>>>> go >>>>> in at 10 and be done when he could. So some days it was 2 and other >>>>> days >>>>> 3:30. the school can make these accomadations and especially if you >>>>> can >>>>> get a letter from the doctor asking for a reduced school day. >>>>> She clearly is not doing well right now and it is not a good idea to >>>>> continue stressing her until she gets her immune system up and >>>>> running. >>>>> I >>>>> would also wonder if she is getting an adequate dose of Gamma >>>>> Globulin. >>>>> My >>>>> son has a great deal of fatigue when his does was too low. Has she had >>>>> levels drawn recently? My sons levels have to be over 900 for him to >>>>> stay >>>>> well. It is different for each kid. >>>>> >>>>> BARBIE >>>>> >>>> >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 -- Have you gotten a 504 plan yet.....they cant bust you for truancy when you have that in place for her. I wonder if they would work with you on a reduced school week......like, could she only go on Mon, Wed, and Fri? and maybe do homework on the days she is off, or have a tutor come to the house on the off days? but then you'd be left finding a babysitter, right? bc of your school......I know you must be really frustrated. I remember you saying before how much she really enjoys school......I hope you can find a way for her to be able to stay:) valarie mom to 3 w/cvid - In , " " <bluetaelon@...> wrote: > > I just talked to the school about 's absences. School has been in > session 49 days and she's been absent 14 days due to illness (I don't know > if that accounts for missing Friday last week and yesterday and today for > the stomach flu) and tardy 12 days. She's been sleeping 12-15 hours a day > since starting school and she is dead to the world when she has those days > and its pointless to even try waking her up. She just NEEDS the sleep. That > leaves 23 days where she was not absent or tardy (she misses half the day > due to sleeping when tardy she's asleep between 8-9pm and needs to be at > school at 9am but doesn't wake up until 10-11am). I've pulled her from PE > and any activities that burns a lot of calories since she had started losing > weight which was causing access issues for SCIG since she's already rail > thin and that helped a lot with the sleeping issue but on the days where its > ignored.. she sleeps 12-15 hours. She's already sleeping 9pm to 8am on good > days and that's dragging her out of bed. Before I enrolled her in school she > would sleep about 8 hours a night and be fine. She LOVES school. > > I'm also hesitating on pulling her because she LOVES the after school > academic enrichment program which is about 2 hours a day. I just called to > find out if she would still be able to attend if I switched her to an out of > district public school and learned that no she wouldn't but its a moot point > because she's getting kicked out in Dec because they misunderstood there > grant and thought it was for all district kids when it fact it was limited > to kids at that school site which she doesn't attend anyway so all the kids > who don't attend that school are getting kicked from the program in Dec. > (giving the parents 2 months to find other childcare options since it runs > until 6pm like daycare) > > I know I am teetering on a truancy officer showing up so I am worried about > that. My concern is that age old argument of socialization. We HS'd for 3 > years, the only support here for HS'er is if your far right wing religious > homeschoolers which we are not (were not even Christian which makes it even > harder to get accepted) so there's no chance of joining either of the 2 > HS'ing groups. The one group we mesh with is an hour away and the gas money > to go every week is just not in the budget plus outside of the park days > there we would have to fork over money for activities. So we'd be facing > social Siberia again. I mean there's story time at the library 1x a week but > that's hardly enough for the super social kid and I can't afford other > classes like dance or what ever. There are neighborhood kids but I do not > want her playing with them (which is why I put her in the afterschool > program to limit her exposure to those kids), they literally represent all > the reasons someone would want to homeschool. Horrible kids! > > So, what would you do if you were in this situation? > > *who's losing her mind at the thought of going back to HS'ing and > dealing with fighting kids ALL DAY LONG, not to mention getting school work > done > 8 CVID > Lilly 2 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Thanks, He has been a nightmare since he was a baby. He is so resistant to life in general. So I do not know how I would take wheat out of his diet. Yes he did have ED but they really did nothing for it. I have seen so many kids on this list with it but he only rarely has loose stools. He mostly had bloody stools at the time with lots of mucus. When he was 5 we followed up and were told his gut was very friable( small intestine blood very easily) but no treatment again. As I said last year we scoped him again and everything looked good. I was told that he was fine. I just feel like there is something else but he would NEVER change his diet. He is SOOOOO particular about what he eats and fights any changes in anything. Actually I am in a nightmare with him right now. He is wreaking havoc at school. ( threatened the bus driver) so I have had to pull him from school and we are going to have to try to homeschool. Really what I think needs to happen is that he go to Residential Treatment for awhile. It is so sad but he is only hurting himself and now it is not only in the home but at school too. He in the past had school phobia and also cried everyday but now he wants to go to school but only because of friends but is TOTALLY overwhelmed by being there. He also cannot get up in the morning so I have to fight him daily but refuses to go to bed at night. It is exhausting!!!! He has a sinus infection right now but REFUSES to do anything about it. I noticed he has started coughing this morning so we will see where we go with it. BARBIE ________________________________ From: <bluetaelon@...> Sent: Wednesday, October 29, 2008 1:43:18 AM Subject: Re: Your thoughts please? He tested + for EG? Was it treated? That takes YEARS to overcome and that's with intensive treatment. These kids are in a lot of pain so its no wonder they have behavior issues. At his age he may not realize he's in pain because for him that's normal. Another thing I would look at is Celiac disease, it can cause some serious mental health issues. When I've gotten gluten into my diet on a regular basis I become very depressed, severe anxiety and more then once suicidal. Its actually marked on the front of my folder that if I show up for treatment to check for gluten exposure because EVERY TIME I've had mental health issues it was due to gluten. Removed the source and I was fine within 30 days every time, I also have a jeckle and hyde type reaction that starts about 15 minutes after exposure and often I am not aware of it. dd reacts with extremely violent behavior to gluten and is a nightmare, if the exposure is prolonged she starts developing autistic type symptoms. We found we needed to go on the Feingold diet as well, I thought it was just dd that needed it but realized I needed it as well. Anyway, check out this group, great resource for EG! http://health. groups.. com/group/ eosinophilgastro ps: fantastic resource on nutritional healing is the " Encyclopedia of natural medicine " by Murray and Pizzorno. I have used that to find a lot of nutritional deficiency issues then test though the Dr and its been right on every single time. Re: Your thoughts please? >>>> >>>>> My son has had an abbreviated schedule when he has needed it. He >>>>> would >>>>> go >>>>> in at 10 and be done when he could. So some days it was 2 and other >>>>> days >>>>> 3:30. the school can make these accomadations and especially if you >>>>> can >>>>> get a letter from the doctor asking for a reduced school day. >>>>> She clearly is not doing well right now and it is not a good idea to >>>>> continue stressing her until she gets her immune system up and >>>>> running. >>>>> I >>>>> would also wonder if she is getting an adequate dose of Gamma >>>>> Globulin. >>>>> My >>>>> son has a great deal of fatigue when his does was too low. Has she had >>>>> levels drawn recently? My sons levels have to be over 900 for him to >>>>> stay >>>>> well. It is different for each kid. >>>>> >>>>> BARBIE >>>>> >>>> >>>> >>>> Quote Link to comment Share on other sites More sharing options...
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