Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 Congrats on the college acceptance. Isn't she already taking a few college classes on the side? What age did she start that? is looking at options this summer for gifted students and some are at Georgia State. This child never ceases to amaze me. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, Sensory Integration Disorder, Diabetes Insipidus, colonic inertia) http://maceyh.home.att.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 Congrats on the college acceptance. Isn't she already taking a few college classes on the side? What age did she start that? is looking at options this summer for gifted students and some are at Georgia State. This child never ceases to amaze me. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, Sensory Integration Disorder, Diabetes Insipidus, colonic inertia) http://maceyh.home.att.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 Ursula, regarding HS kids taking college classes I told & Katy that they could start when they began to " look " more like a college student (size wise). That for him was at age 12. Still he was a rarity in the classroom. The other criteria I made for them was total independence in the classroom -- (Mother doesn't even get to meet the teacher or work out details, etc. If they miss, they work it out, if they are not doing well, they make an appointment with the instructor, etc.) Katy wasn't interested until she was 16 and that was fine with me because then she could drive herself to classes. etc. The other day they had a field trip and she was the only " minor " in her lab group that had to get a parental permission slip. But she handled it fine. Last year (her first year) she made a lot of friends, but she still felt out of place. This year -- she's having a blast. She just got back from playing hacky-sack with three new friends she had met (all male!). She's feeling very comfortable on campus, etc. All the colleges that I've talked to said that no matter how many college courses you've taken, as long as they are taken BEFORE high school graduation -- you would still enter college as a FRESHMAN. That was important to me because Freshman have a lot of special introductory classes, parties, etc. that transfer students do not. So, essentially was a Freshman his first semester at Wheaton and a Junior his 2nd semester of his first year! He still plans to attend all four years so he's decided on a double major. That should keep him really busy! For Katy, it will mean she will enter as a FRESHMAN and be able to take slightly less hours without messing up graduation in 4 years -- provided she ever decides on a major. NOTE: Not all classes offered at a college are college-level classes. We heard about a really neat program offered by Stanford. BUT that's all it was -- neat classes that you paid an arm and a leg for -- but they were not college level classes and did not transfer anywhere for any credit! A lot of colleges are offering those and you need to weigh out the cost against the benefit -- but don't think you are getting college credit for them! Okay -- that's probably more than you wanted to know. Raising gifted students is quite a challenge -- almost if not greater than disabilities -- because you are always running to stay ahead of them and their dreams. Best wishes for -- how old is she? Another option that keeps her off the college campus, but gives her some academic challenges is correspondence courses. A lot of colleges offer them and you don't have the problem of keeping an eye on her! In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 Ursula, regarding HS kids taking college classes I told & Katy that they could start when they began to " look " more like a college student (size wise). That for him was at age 12. Still he was a rarity in the classroom. The other criteria I made for them was total independence in the classroom -- (Mother doesn't even get to meet the teacher or work out details, etc. If they miss, they work it out, if they are not doing well, they make an appointment with the instructor, etc.) Katy wasn't interested until she was 16 and that was fine with me because then she could drive herself to classes. etc. The other day they had a field trip and she was the only " minor " in her lab group that had to get a parental permission slip. But she handled it fine. Last year (her first year) she made a lot of friends, but she still felt out of place. This year -- she's having a blast. She just got back from playing hacky-sack with three new friends she had met (all male!). She's feeling very comfortable on campus, etc. All the colleges that I've talked to said that no matter how many college courses you've taken, as long as they are taken BEFORE high school graduation -- you would still enter college as a FRESHMAN. That was important to me because Freshman have a lot of special introductory classes, parties, etc. that transfer students do not. So, essentially was a Freshman his first semester at Wheaton and a Junior his 2nd semester of his first year! He still plans to attend all four years so he's decided on a double major. That should keep him really busy! For Katy, it will mean she will enter as a FRESHMAN and be able to take slightly less hours without messing up graduation in 4 years -- provided she ever decides on a major. NOTE: Not all classes offered at a college are college-level classes. We heard about a really neat program offered by Stanford. BUT that's all it was -- neat classes that you paid an arm and a leg for -- but they were not college level classes and did not transfer anywhere for any credit! A lot of colleges are offering those and you need to weigh out the cost against the benefit -- but don't think you are getting college credit for them! Okay -- that's probably more than you wanted to know. Raising gifted students is quite a challenge -- almost if not greater than disabilities -- because you are always running to stay ahead of them and their dreams. Best wishes for -- how old is she? Another option that keeps her off the college campus, but gives her some academic challenges is correspondence courses. A lot of colleges offer them and you don't have the problem of keeping an eye on her! In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2002 Report Share Posted January 21, 2002 In a message dated 1/21/02 1:47:13 PM Pacific Standard Time, dale@... writes: > On IvIG for 4 years and never trialed off!!!! Once we got the definitive > diagnosis of CVID -- she has low IgG, low IgA, low IgM, low IgD and low > IgE, > no one has ever suggested a trial off. > Hi Dale, has always been the mystrey kid........Yep it was 4 years before we were trailed off! Levels were never checked during that time.! Remember doesn't have a clear cut diagnosis. His Igg levels are in normal range. Its the lack of antibody response that put him on. had had 6 surgeries in two years and could not get a clear sinus scan. The immuologist and ENT and Stanford decided to try IVIG since had all the symptoms.........IVIG changed his life! After two years they did stretch his IVIG out to 6 weeks and began the downward pattern again, swollen hot joints came back, sinus impacted.......within two months they put us back to the 3 week schedule and he was fine again. It was then decided that we would not retest him until he was 11. He has been very healthy with IVIG, so in June it was decided to try him off. Thats were we are now. We will see what happens on thursday le 11, Selective Antibody Def., IVIG for 4 years, every 3 weeks. Syringomyelia 6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids removed, septic hip since IVIG 0 surgery needed! Trailing off IVIG 6/28/01... Biopsy of throat and Nasal endoscopy 10/24/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2002 Report Share Posted January 21, 2002 In a message dated 1/21/02 1:47:13 PM Pacific Standard Time, dale@... writes: > On IvIG for 4 years and never trialed off!!!! Once we got the definitive > diagnosis of CVID -- she has low IgG, low IgA, low IgM, low IgD and low > IgE, > no one has ever suggested a trial off. > Hi Dale, has always been the mystrey kid........Yep it was 4 years before we were trailed off! Levels were never checked during that time.! Remember doesn't have a clear cut diagnosis. His Igg levels are in normal range. Its the lack of antibody response that put him on. had had 6 surgeries in two years and could not get a clear sinus scan. The immuologist and ENT and Stanford decided to try IVIG since had all the symptoms.........IVIG changed his life! After two years they did stretch his IVIG out to 6 weeks and began the downward pattern again, swollen hot joints came back, sinus impacted.......within two months they put us back to the 3 week schedule and he was fine again. It was then decided that we would not retest him until he was 11. He has been very healthy with IVIG, so in June it was decided to try him off. Thats were we are now. We will see what happens on thursday le 11, Selective Antibody Def., IVIG for 4 years, every 3 weeks. Syringomyelia 6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids removed, septic hip since IVIG 0 surgery needed! Trailing off IVIG 6/28/01... Biopsy of throat and Nasal endoscopy 10/24/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2002 Report Share Posted January 22, 2002 In a message dated 1/21/02 9:43:42 PM Pacific Standard Time, dale@... writes: > I'll put 's appointment for Thursday on my calendar -- what time Hi Dale, Its this Thursday at 2:30. He also has an appointment with the pain clinic at LPCH at 1:00. They are going to start accupuncture for his fatigue issues. He was not a happy camper when they told him last week they wanted to do accupuncture.......the doctor told him, and we agreed it was try accupuncture or give up a sport. The doctor feels that without the help of the IVIG 's body is constantly fighting off infections and causing the fatigue. Then with the added load of sports his body is struggling........ will not give up sports.......he has told us thats the only time he doesn't hurt is when he is doing gymnastics or wrestling. They have found that accupuncture helps.......we are willing to try anything at this point to help . It will be done at the pain clinic at LPCH at Stanford. The school has sent us a letter setting up the SST meeting. has a great teacher and is worried about ......she has done all the leg work to establish the 504 for Jr high.....she has seen the drastic change in since being off IVIG and doesn't understand what is taking the doctors so long to make up their minds, so she is making sure everything is in order for us. I do understand the doctors, it would be easier if it was obvious in 's case but then we would have never been sent to Stanford. It just gets frustrating because we see it everyday. Thanks for your prayers, le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2002 Report Share Posted January 22, 2002 My son's levels are checked every 3 months and each time his levels go up which is why he is " trialed " off; however, at the end of the summer, his IGG level is between 350-450. I would like to suggest not trialing him off but not until I have some information to help me. Hi from Dale from Dale, Mom to Katy, CVID, age 17 On IvIG for 4 years and never trialed off!!!! Once we got the definitive diagnosis of CVID -- she has low IgG, low IgA, low IgM, low IgD and low IgE, no one has ever suggested a trial off. At the IDf convention last June, Dr. Lederman of s Hopkins Hospital indicated that he would NEVER trial off a patient who has a definite diagnosis of CVID. His belief is that if puberty or age or anything else were to trigger the patient's IgG production -- you would be able to detect that at regular trough level testing (which should be done every 6 months at the least). He told us that one of his young adult patients suddenly presented with a higher than normal trough level of IgG so they trialed her off and found that she had indeed been healed. He was pretty adamant about it since the primary danger for a CVID patient is the permanent damage that can result from infection. Now, we all found at the IDF convention that everyone there had a different opinion on just about everything (ask 5 doctors and get 6 different opinions or something like that). But, I would want some proof that trialing off was to some advantage to my child. If this is unclear -- please ask questions -- I've just had 2 days of vertigo and my thinking is a little dizzy!! Hope it helps though. In His service, Dale This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2002 Report Share Posted February 16, 2002 Yes, it helps a lot to hear hopeful outcomes. We are in that difficult time when we don't have a diagnosis yet, so we worry a lot. I had wondered about putting her in Sunday School and AWANA next year. Talk about worrying about the future LONG before it arrives!! Pam wife to (15 years) mother to , 8, Hannah, 5, Rebekah 2, and Leah (5-11-2001) Hi from Dale from Dale, Mom to Katy, CVID, age 17 Pam, we chose to homeschool both of our children LONG before we had any inkling of problems -- but it was a life saver during her worst illnesses before diagnosis. She had chronic fatigue so badly she could never had attended classes. She had to drop out of so many activities that we were glad we didn't have to introduce a new school situation, too. But.... many, many, many kids with PIDs lead fabulously normal lives. Most of those kid's parent's don't stay on this list because they are too busy with scouts, and gymnastics and swimming, etc. and having a perfectly normal life. Some of our kids are unable to attend school, some have to have a modified day -- but be assured that many, many kids attend regular activities (with minor accomodations). Hope that helps. In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2002 Report Share Posted February 16, 2002 Yes, it helps a lot to hear hopeful outcomes. We are in that difficult time when we don't have a diagnosis yet, so we worry a lot. I had wondered about putting her in Sunday School and AWANA next year. Talk about worrying about the future LONG before it arrives!! Pam wife to (15 years) mother to , 8, Hannah, 5, Rebekah 2, and Leah (5-11-2001) Hi from Dale from Dale, Mom to Katy, CVID, age 17 Pam, we chose to homeschool both of our children LONG before we had any inkling of problems -- but it was a life saver during her worst illnesses before diagnosis. She had chronic fatigue so badly she could never had attended classes. She had to drop out of so many activities that we were glad we didn't have to introduce a new school situation, too. But.... many, many, many kids with PIDs lead fabulously normal lives. Most of those kid's parent's don't stay on this list because they are too busy with scouts, and gymnastics and swimming, etc. and having a perfectly normal life. Some of our kids are unable to attend school, some have to have a modified day -- but be assured that many, many kids attend regular activities (with minor accomodations). Hope that helps. In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2002 Report Share Posted March 18, 2002 Recalled IVIG?? I must have missed a message. I also tried to register with the IgG recall notice group but couldn't get subscribed. Rebekah had IgA-free gammaguard on Feb 28th and has had headaches since. What's the scoop? Pam wife to (15 years) mother to , 8, Hannah, 5, Rebekah 2, and Leah (5-11-2001) Re: Hi from Dale I got an email notice, but not the corresponding info in the mail yet. What is the lowdown on the recall? had his IVIG last Tues and does not seem to have had any adverse effects. Thanks, Wenoka At 12:14 PM 03/15/2002 -0800, you wrote: >from Dale, Mom to Katy, CVID, age 17 > >Here we go again! I just got a URGENT BIOLOGICAL RECALL but this one is too >late -- Katy received that contaminated lot on March 4. On March 6th she had >an excruciating migraine and has had a severe headache every single afternoon >and evening since. I've called the Home Health Care group that administered >the IV and I've called her Pediatrician. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Hi Dale... Unfortunately we did not have a choice of IVIG brands, We ran it over twelve hours and still had the problem. I am almost positive that it was because it was a Generic brand and Chelsea has only had Gamaguard for the last 3 plus years. I am just grateful we were able to complete the infusion and were able to go home the next day. I hope your back is doing well and I also hope Katy is doing well too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Hi Dale... Unfortunately we did not have a choice of IVIG brands, We ran it over twelve hours and still had the problem. I am almost positive that it was because it was a Generic brand and Chelsea has only had Gamaguard for the last 3 plus years. I am just grateful we were able to complete the infusion and were able to go home the next day. I hope your back is doing well and I also hope Katy is doing well too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Hi Dale, Thanks for the info. Cassie has been receiving Gamimmune and has never had what we experienced last night. We never go above 40 on her rate, so it does take a while to get infused. Tonight she is now continuing to complain of headaches and now the neck is being affected (hurts upon moving it). I did call doc and he said that is a common reaction esp. if the person possibly has an infection that is active. He went into great detail (mostly medical) which made sense. I am to keep her on the meds but tonight she is still running a fever. I might run her to ped's office if this continues through tomorrow. I will call Bayer in the morning. I do know that she was not affected by the recall though. Marlo: It was nice to finally hear from you again. Glad to hear that Chelsea is on the mend. Tell the girls that Allyssa and Cassie return their " hellos. " Are you still planning to make it to Texas anytime soon? Just let us know, and we will try to make plans to catch up with you guys. Belinda Rose, Mom to Allyssa (10) and Cassie(7), igg immunodeficient, asthma, sinusitis, IVIG for 5 years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Hi Dale, Thanks for the info. Cassie has been receiving Gamimmune and has never had what we experienced last night. We never go above 40 on her rate, so it does take a while to get infused. Tonight she is now continuing to complain of headaches and now the neck is being affected (hurts upon moving it). I did call doc and he said that is a common reaction esp. if the person possibly has an infection that is active. He went into great detail (mostly medical) which made sense. I am to keep her on the meds but tonight she is still running a fever. I might run her to ped's office if this continues through tomorrow. I will call Bayer in the morning. I do know that she was not affected by the recall though. Marlo: It was nice to finally hear from you again. Glad to hear that Chelsea is on the mend. Tell the girls that Allyssa and Cassie return their " hellos. " Are you still planning to make it to Texas anytime soon? Just let us know, and we will try to make plans to catch up with you guys. Belinda Rose, Mom to Allyssa (10) and Cassie(7), igg immunodeficient, asthma, sinusitis, IVIG for 5 years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 Dale: Of course take that pee in, but I'd like to chime in that I ALWAYS have cloudy pee. It's noticeable enough that when they take a routine urine sample for a physical or whatever they remark that on the sheet, but don't pursue it further. Any bladder infection I've ever had came with pain and blood and that horrible feeling of " having to go " but then you can't go. I hope Katy's is nothing as well! Good luck -- (mom to , 3yrs old, polysaccharide antibody def) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 Dale, Cloudy pee -- usually because of dehydration (hmmmmm - seems I'm into the dehydration thing today!). Of course, sometimes because of a UTI - though that's unusual without symptoms, and you said she's on Cipro. There are a few strains of enterococcus out there right now, that aren't sensitive to Bactrim or Cipro (two of the first-line UTI drugs), but they're usually contracted after being in a hospital setting, or in people who have taken much Bactrim and Cipro over the years. Occasionally cloudy because of ketones and other substances being deposited in higher quantities than usual in the urine -- for example, from not eating much (ketosis from dieting), or from things like diabetes (diabetic ketosis -- highly unlikely without other symptoms like excessive thirst, hunger, fatigue, and weight loss). Occasionally cloudy because of mucus or other discharge " in the region " or because of yeast in the actual urinary tract, secondary to being on antibiotics. Hope that helps - your doctor's UA should give the definitive answers, though. Hope she's doing well otherwise! Is she getting psyched to wrap up the school year and start preparing for college? Have you guys found an immuno you like in S. California? I know that Maurita LOVES her immuno, though I'm not sure how near UC-Irvine is to Asuza... Hope you are well, and that your parents' health improves -- I know how hard it is to juggle out-of-town family issues (except my brother and parents, all of my relatives live or lived outside the US - we've always been the only ones here in the States - so my parents have had to deal with the distance issues over the years). Take care, Dale Weatherford wrote: > Katy just asked me what it meant to have cloudy pee!!! Oh, yeah! This is a > new one for us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 Dale, Cloudy pee -- usually because of dehydration (hmmmmm - seems I'm into the dehydration thing today!). Of course, sometimes because of a UTI - though that's unusual without symptoms, and you said she's on Cipro. There are a few strains of enterococcus out there right now, that aren't sensitive to Bactrim or Cipro (two of the first-line UTI drugs), but they're usually contracted after being in a hospital setting, or in people who have taken much Bactrim and Cipro over the years. Occasionally cloudy because of ketones and other substances being deposited in higher quantities than usual in the urine -- for example, from not eating much (ketosis from dieting), or from things like diabetes (diabetic ketosis -- highly unlikely without other symptoms like excessive thirst, hunger, fatigue, and weight loss). Occasionally cloudy because of mucus or other discharge " in the region " or because of yeast in the actual urinary tract, secondary to being on antibiotics. Hope that helps - your doctor's UA should give the definitive answers, though. Hope she's doing well otherwise! Is she getting psyched to wrap up the school year and start preparing for college? Have you guys found an immuno you like in S. California? I know that Maurita LOVES her immuno, though I'm not sure how near UC-Irvine is to Asuza... Hope you are well, and that your parents' health improves -- I know how hard it is to juggle out-of-town family issues (except my brother and parents, all of my relatives live or lived outside the US - we've always been the only ones here in the States - so my parents have had to deal with the distance issues over the years). Take care, Dale Weatherford wrote: > Katy just asked me what it meant to have cloudy pee!!! Oh, yeah! This is a > new one for us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2002 Report Share Posted May 12, 2002 from Dale, Mom to Katy, CVID, age 17 and counting Sorry I dropped out for a while. Katy and I traveled to D.C. for a IDF leadership conference, she came home sick, found a lump in her breast, we did the whole 9 yards on that, found it's just tissue and nothing to be concerned about, she's doing one sinus infection after another and got an attitude like no body's business about turning 18. I thought Senior-itis was bad -- but this is ridiculous! She's challenging and I on absolutely everything. Hang on Mothers -- and you thought 2 year olds were tough. Actually, I think we may live over it! But I'll let you know come August when she leaves for college! I'm sorta rusty on this, but let me sorta cover the bases: There's milk allergies and there are milk intolerances. They are two different things. Milk allergies occasionally show up on allergy tests but not necessarily and generally cause things like diarrhea and hives and itches and headaches and of course anaphylactic shock for those that are really severe. Milk intolerances can only be determined by trial and error or by colon biopsies and can cause things like diarrhea, bloating, headaches, fatigue (note the overlap). Then more confusing is that intolerances and allergies can be caused by LACTOSE (the milk sugar) found primarily in milk but not so much in the cream or CASEIN (the milk protein) found primarily in the cream but not so much in the milk or it can be caused by the fact that it is BOVINE (anything related to beef). So, all in all its a pretty complicated mess -- but with trial and error you can get it pretty close to figured out. But warning -- a milk intolerance (I don't know about an allergy) that irritates the lining of the intestines reaction can last up to a week!!!! So, be careful that you are not just seeing the same reaction multiplied. Hope that makes sense -- my men folks are waiting on me to play a game. Gotta get off. In His service, Dale Quote Link to comment Share on other sites More sharing options...
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