Guest guest Posted March 30, 2001 Report Share Posted March 30, 2001 , I'm nearly finished reading Dr. Chansky's book, " Freeing Your Child from Obsessive-Compulsive Disorder: A Powerful, Practical Program for Parents of Children and Adolescents " . It's excellent, even though I'm starting to realize that my daughter is probably more Tourette's with some OCD... still learning lots every day. :-) -Marlys At 11:48 AM 3/30/01 -0500, you wrote: Also, does anyone have a suggested reading list about OCD? I think 's case is relatively mild, but he is exhibiting a lot of behavior problems. I need to learn more and learn how to effectively deal with him. Thanks again. (Durham, NC) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2001 Report Share Posted March 30, 2001 > Thanks for writing, Joni! And thanks to everyone else who has responded. > > I've been trying to learn a lot in the past 1 1/2 days since was > diagnosed. I'm feeling a bit overwhelmed, but it's reassuring to know > that help is available and that there are many friends here with whom to > share experiences. *** I know how you feel. I'm not sure if you saw my posts on the ENFP list about OCD (that's a personality type list for those who don't know - but I was a wreck. That's when I decided I needed a support group because EVERYONE I know doesn't understand this thing. Heck, I'm still trying to understand OCD. I've had to educate my family members, friends, 's teachers, principal, even his Special Ed teacher who thought he was 'daydreaming' too much! I explained to her that OCD children often appear to be daydreaming when in fact they are suppressing their urge to perform a ritual (like hand-washing) or suppressing repetitive thoughts. Whew! It's been very challenging for everyone- especially when my mother or father tell him to 'just knock it off' or 'he needs a good spanking.' They don't understand either. > > Joni, you hit on a question that has been puzzling me, too. It seemed > that we were with the psychiatrist such a short amount of time before he > decided that had OCD. There were no formal tests performed, just > questions about habits, attitudes, etc. had been seeing a > psychologist at the same practice, so maybe the psychologist suggested > the diagnosis. Do the doctors usually perform any standard tests, or is > the diagnosis typically based on observed behaviors as reported by > parents? It just seems strange that 20 minutes and $190 later, I leave > with a prescription and I didn't have a clue about what questions I > should be asking. ***I asked my psychiatrist if he should perform the formal psychiatric evaluations on or not - and since he had a Child Study performed at school, his doctor said it was unnecessary unless I insisted. He also said it was very expensive. I didn't feel it was necessary because my mother-in-law has OCD. While I didn't have a name for it 22 years ago when I was first married, my curiousity about her led me to read up on this disorder about 10 years ago. Bingo-- her symptoms were all there (door locking rituals at night before bed, clicking her alarm clock off and on 100 times before she felt sure it was on, checking the stove, iron, and other appliances, violent rages, etc). Then, (now 17) developed ADHD when he was 9yo with some OCD symptoms with it. By that time, I knew what OCD was and when ie showed symptoms last year, further testing wasn't necessary. Sometimes, I think parents can make the BEST diagnosis' for their children because we know the family history and the child so well. If you are unsure whether has OCD, start reading as much as you can about it. There are several subtypes to this disorder (hair pulling, eating disorders, depression, etc). I'm currently reading a book called 'Obsessive-Compulsive Disorder, Help for Children and Adolescents' by Mitzi Waltz. It's GREAT. It also goes into everything you need to know about the IEP's at school and your legal rights to a good education for your son. I picked this book up at the public library by accident. I was looking for a book the psychiatrist recommended: 'The Boy Who Couldn't Stop Washing.' They are ordering it for me and it should come in soon. This is an older book (written in the 70's) with outdated medication recommendations, but our doctor said it has many good stories about the different 'faces' of OCD. > > Joni, didn't you mention on the ENFP list that a trampoline really > helped your son? I'd love to know more. (By the way, I've sent several > emails to your account. Did you receive any of them? I've heard > that has had a few server problems....) *** Oooops! I haven't been checking my email. I'll do that once I finish this letter! (sorry YES, the trampoline was a lifesaver for this family with 3 very active sons! I bought it when (now 19) was 12 or so. , 17- ADHD- well, if it wasn't for the trampoline- I think I would have killed him by now! LOL It's one of those big round ones-- and they're very safe. Unlike the rectangle ones we had in our day, the round shape of these new ones keep the kids in the CENTER of the trampoline no matter where they jump-- they always land in the center. So, I have no worries at all about them getting hurt. It was so used and worn out by my older sons, when ie was around 3yo, we had to replace everything on it except the frame. The initial $200 I spent on the trampoline was the BEST money I ever spent. It's truly made my life easier with 3 energetic boys. Plus, I get on there too and have a BLAST! Great way to de-stress the whole family, f'sure! Hang in there ! ((((Lots of hugs to you and yours)))) Joni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2001 Report Share Posted October 28, 2001 Welcome , What a caring Angel you are , requesting for information to assist this 6 yr.old boy . Hope you find many answers to guide him in the right direction . If an IEP has been done on him , what are the goals needed for him ? Check what Joan and others from this list have shared under Bookmarks and Files . There are great information that have been posted . We have many SITES or information to share , but once you mention which are needed the most would help , so that our professional PARENTS from this list could assist your questions . You've already mentioned he is nonverbal , so check out what I mention above . Here are a few sites in the mean time to check out . http://www.isn.net/~jypsy/autilink.jtm http://www.bbbautism.com http://www.autisms.org/Links.htm Hmm, small town , sounds like the more you learn , you could start providing some services . Many families would enjoy that in your town . Also, try to find out if any resources are available in your town ? You already have the best resource at your finger tips , the internet . Do not hesitate to ask questions , many here are just wonderful . I could vouch for that . Hope you find our list helpful . Luck . Irma, 13,DS/ASD. > Hello My name is . > I joined this list in hope of guidance. > I am a para at our local grade school and this year an autistic boy has > joined our school. > We live in a small town so we have no autistic programs available so they > just assigned me to him > but have gave me no real guidance as how to teach him. > He is a wonderful child. he is non verbal but is very bright. He is 6 years > old. > I know he has alot of potential but i have no idea where to even start or > look for information to help me. > The school district is very unhelpful. > Can anyone give me ideas where to even start. > Thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2001 Report Share Posted October 28, 2001 Oops ! Sorry , Typed it too fast , correct website : http://www.isn.net/~jypsy/autilink.htm Irma, 13,DS/ASD. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2001 Report Share Posted October 28, 2001 If you go to the page to look at this group, under files you'll find a lot of the websites that will help. (I have to confess, I haven't looked to see what's there). I homeschool my son (who is Down Syndrome and PDD-NOS and 11 years old - but academically and socially and emotionally he's about like a 7 or 8 year old). The biggest thing is to break everything down into smaller steps.....and I mean really small. Here's an example. I taught how to wash his hands. 1. turn on cold water 2. turn on hot water 3. wet hands 4. turn over and wet bottom of hands 5. put soap on hands 6. rub hands together to wash hands 7. rinse hands 8. shake excess water off hands 9. turn off hot water 10. turn off cold water 11. get hand towel 12. dry hands 13. put towel back What you do, after you break it down into smaller parts is to walk him through the whole process with you doing everything. Then the next time, you do everything except the last step, which he does. That's called reverse chaining. You just keep letting him do more until he's doing it all. I used pictures with when he wasn't verbal. There's a good site called dotolearn.com that has pecs pictures that you can print off. I even made a strip of the steps needed for to take a shower so he could do it himself. I would still have to be in there though, or he'd pour all the shampoo into the water, shave the soap or whatever else his mind could come up with. Here are the sites that I have. http://www.naspweb.org/pdf/BehInt2k.pdf http://www.newhorizons.org/spneeds_meshman.html http://specialeducation.org/ http://www.bbbautism.com/ http://www.jamesdmacdonald.com/misbehavior.htm http://www.teacch.com/teacch_e.htm http://www.autism-society.org/packages/packages.html Loriann Wife to Dewight Mom to , 11 years, Down Syndrome, PDD-NOS and Celiac Disease. , 2 years and Strong Willed Both homeschooled. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2001 Report Share Posted October 28, 2001 Irma Thanks for replying. I will check out those sites. The bad thing is that their is an IEP but their are no goals hmmm well their are but they read like , Work on being verbal, use pecs (which we are doing) and have him function as a " normal " 6 year old child. I am not a professional but i would estimate that he functions at about 2 just going by my experience as a mother. His mother has not accepted that he is Autistic yet but that is understandable, The whole thing is that the mother and the school system neither one will give in to the others wishes and i am put in the middle. The mother wants him in the regular first grade room doing first grade work and the school system doesnt want him there but has no choice at this point . He is definetely not ready for first grade work but i understand the mothers point and i try to break down the work as much as possible but sometimes i am not sure exactly how to do it since the people over me wants nothing to do with him hoping the mother will move him to another school. He is great on the computer and does wonderfully at matching and tracing so right now like on his Phonics papers i write the words and let him trace them and then cut up a second paperand let him match the pictures. That way we are doing similar to what the class is doing. But i know their is alot more that i can be teaching him I just wasnt sure how to get started. Last week I took my daughters boggle junior game and he did so wonderful I started out with 3 different words and let him match the letters then by the end of the day i would just show him the picture and he could spell the word without looking. I am not sure if this is typical of autisim or not but he can spell anything. He loves walt Disney movies and if you give him letter tiles he will spell Walt Disney Presents.... and can spell the title of any Disney movie it is amazing. I have fallen in love with him quickly. He also does great with preschool computer programs. Last year I worked with a downs syndrome child and that was easy for me because i have a cousin who has down syndrome so i kind of new what kind of things to do plus alot of what her parents wanted her to learn was life skills and with his new boy i am not allowed to teach him any life skills. anyways sorry for rambling. At 02:08 AM 10/29/2001 -0000, you wrote: >Welcome , >What a caring Angel you are , requesting for information to assist >this 6 yr.old boy . Hope you find many answers to guide him in the >right direction . If an IEP has been done on him , what are the goals >needed for him ? Check what Joan and others from this list have >shared under Bookmarks and Files . There are great information that >have been posted . We have many SITES or information to share , but >once you mention which are needed the most would help , so that our >professional PARENTS from this list could assist your questions . >You've already mentioned he is nonverbal , so check out what I >mention above . Here are a few sites in the mean time to check out . >http://www.isn.net/~jypsy/autilink.jtm >http://www.bbbautism.com >http://www.autisms.org/Links.htm >Hmm, small town , sounds like the more you learn , you could start >providing some services . Many families would enjoy that in your >town . Also, try to find out if any resources are available in your >town ? You already have the best resource at your finger tips , the >internet . Do not hesitate to ask questions , many here are just >wonderful . I could vouch for that . Hope you find our list helpful . >Luck . >Irma, 13,DS/ASD. > > >> Hello My name is . >> I joined this list in hope of guidance. >> I am a para at our local grade school and this year an autistic boy >has >> joined our school. >> We live in a small town so we have no autistic programs available >so they >> just assigned me to him >> but have gave me no real guidance as how to teach him. >> He is a wonderful child. he is non verbal but is very bright. He is >6 years >> old. >> I know he has alot of potential but i have no idea where to even >start or >> look for information to help me. >> The school district is very unhelpful. >> Can anyone give me ideas where to even start. >> Thanks >> > > > >-------------------------------------------------- >Checkout our homepage for information, bookmarks, and photos of our kids. Share favorite bookmarks, ideas, and other information by including them. Don't forget, messages are a permanent record of the archives for our list. >-------------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2001 Report Share Posted October 28, 2001 Loriann Thanks for replying. I am glad you explained how to break it down. Washing hands is actually one thing I have been working on because he was just potty trained this summer but does not wash his hands and now i know i was making it way to hard for him. Thanks again Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2001 Report Share Posted October 28, 2001 Good websites, I really enjoyed looking at them. I'll save that e-mail for later on uses. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 In a message dated 10/28/01 10:18:50 PM US Eastern Standard Time, skydiver@... writes: << The whole thing is that the mother and the school system neither one will give in to the others wishes and i am put in the middle. The mother wants him in the regular first grade room doing first grade work and the school system doesnt want him there but has no choice at this point . He is definetely not ready for first grade work but i understand the mothers point and i try to break down the work as much as possible but sometimes i am not sure exactly how to do it since the people over me wants nothing to do with him hoping the mother will move him to another school. >> Hi , Thanks for helping this little boy...he sounds great and so do you. Thanks for doing all you can for him despite a school that isn't trying very hard to help you out. I am one of those parents too that wants my child in an age appropriate general ed classroom. My son has never done grade level work but that has been OK. Help this boy do what he can do and hopefully the mom will help you out in your quest for materials and information. In a case as you described, having the mom on board with your efforts would be a great asset. What about his teacher? This little boy sounds very capable and I personally get angry when districts allow kids to fail because they don't put in a good effort to help them. Good for you for trying. Personally, I also wouldn't worry too much at age 6 about the life skills stuff...there is plenty the parents can help him with at home and he is still very young. Just my personal opinion. Do you have an Autism Society of American branch in your state? The national phone number is 800 - 3- AUTISM. They may provide someone who can come out and help for free. I don't know where you live but there are probably some autism resources in your state that you could access. You sound really creative and like you are doing some good stuff. Look for someone to come in for a few days to help you work on ways to adapt or accomodate his curriiculum. Is there an autism teacher anywhere in the district that would come over to help? It would help you if his mother could push for some of this help. It may need to get written into his IEP. You didn't talk about his social skills. Does he need any assistance in this area? Is behavior at all a problem with him? IN a county neighboring mine, there are about 70 kids with autism. This county educates all their children with autism from grades K through 7 in general education classrooms and then they start to do some resource pullout after grade 7. The consultant for that program, who does alot of staff training, provided me with the name of a book that she has found extremely useful. It is " Understanding the Nature of Autism - A Practical Guide " ...written by Janice Janzen. Published by Therapy Skill Builders. in 1996. It is a great resource. Good luck to you and keep up the good work. From a parent's perpective, it is wonderful that you care so much. Lauri in MI, mother to Gene, age 13 with DS and autism. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 In a message dated 10/29/01 6:06:15 AM Pacific Standard Time, timothytlstein@... writes: << IN a county neighboring mine, there are about 70 kids with autism. This county educates all their children with autism from grades K through 7 in general education classrooms and then they start to do some resource pullout after grade 7. >> Gosh Laurie, What about the kids that can't handle the noise level or being in large groups? Do they make exceptions for that? I'm thinking that there could not be enough supports for Seth to be able to attend a reg. ed. class. This almost seems like they can in no way be doing any individualized plans to me. Of course, this is my first year working with a school district and IEP's, but it doesn't make sense to me. Can you share more on how it's working out and if there are a lot of behavioral problems? Thanks Gail :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 In a message dated 10/29/01 9:51:03 AM US Eastern Standard Time, smilinggail@... writes: << What about the kids that can't handle the noise level or being in large groups? Do they make exceptions for that? I'm thinking that there could not be enough supports for Seth to be able to attend a reg. ed. class. This almost seems like they can in no way be doing any individualized plans to me. Of course, this is my first year working with a school district and IEP's, but it doesn't make sense to me. Can you share more on how it's working out and if there are a lot of behavioral problems? Thanks Gail :-) >> Hi Gail, The autism inclusion consultant, Kathy, in this county has been doing this for fifteen years. It was perhaps wrong of me to say " all " kids in the county with autism are included. They would not be included if their parents objected to this. But there is not an autism classroom, so the children would go into a room, like a cognitivly impaired classroom. Truthfully, I don't think there are many parents who don't choose to have their children included because that is the norm in this county adn from what I hear, they are well supported. THe autism inclusion consultant really pushes to make it successful for the children. The county uses alot of parapros, but they don't just throw them in there. She provides ongoing training in all aspects of autism to parparos adn teachers. She has a key person in each building who is the school contact for autism should problems arise adn to assist the teachers and parpros. This person is trained a half a day a month as are the parapros. In the summer, she provides two full days of training for the parapros and a full day for the general ed teachers. She helps the schools work on helping the kids develop their social skills and she helps them solve behavior problems. She is a joy to know because she is so enthused about what she does. She met Gene and shared alot of info with me. She didn't question at all that we were trying to include Gene...she made a visit to a team meeting for me and was invaluable in helping them understand his behaviors. I live in the neighboring county and I don't know of anyone in my county who can do what she does and has experience doing it. I don't kow what she does about noise or sensory overload, etc. My quess is that she offers senosry breaks, like a walk outside or down the hall, or a peek at the fish tank. She may suggest that the walk be picking up attendance or delivering books, etc. so the child feels they are contriubuting in some way. I know for Gene, his sixth grade classroom has a small little side room with a window that he will go to if he needs some down time. Somedays he needs that and somedays he doesn't and they do alot of sensory activites with Gene. Unfortunately, at Gene's school, we don't have a key inclusion contact in the school...or someone who knows about autism. But Kathy, in the neighboring county, has agreed to help with Gene in behavior issues if and as they arise. Hope that answers your questions. Lauri in MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2001 Report Share Posted November 11, 2001 Loriann, Thanks for sharing that theirs files in the group of this section. I just went and thought that all the files on it were neat. I didn't know there was so many files!; untill I looked. Well I would say that the icon is my favorite file- but then I always chat on aol im- and I have like 5 icons. . so I guess that's where that comes in. . Well y'all have a good rest of the day and a good week. Oh yeah I also liked the links that you added- I'll keep that e-mail for future information. About my test if y'all are wondering. . I did bad. I failed both of them. ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2001 Report Share Posted November 24, 2001 Naomi - first and foremost is not to try herbal medicine (aka alternative medicine) without consulting with your doctor. Preferably a pediatric immunologist. Herbal supplements have been known to have harmful side effects in immune deficient patients. It brings on a type of altered reaction, instead of boosting and helping the immune system it mutates it and turns it against itself. It is a common treatment to use prophylactic antibiotics with immune deficient patients. Many times it is 2 or 3 antibiotics alternated every so many weeks so that resistance is cut down. My daughter has been on prophylactic Septra for 3 1/2 yrs now. She has also needed immune globulin replacement (IVIG) but the Septra has helped some with chest and UTI infections. Sinus infections are a common thing with IgA deficiency because the sinus cavities are lined with IgA, as is the mouth and stomach. My daughter has chronic sinus infections (always show infection on the CT's but isn't always symptomatic) and we use nasal irrigations with a sinus lavage machine. would be considered too young for this because there is some patient technique involved. Some nasal sprays help, and sometimes squirting sterile saline in the nose and suctioning out the secretions with a bulb syringe might help. Propping him up at night while he sleeps and feeding him in an inclined position (and not laying him down till 30 minutes after he eats) helps ward off ear infections in some babies. If your using formula, letting him nurse on a bottle at bedtime in the crib can pool formula in eustachian tubes sometimes and that might cause fluid build up on his ears. But basically the IgA just isn't there in his upper respiratory system to ward off infections and it just runs in cycles. Have you asked the doctor about the IgG results you saw? Has he mentioned a referral to an immunologist? -- Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2001 Report Share Posted November 24, 2001 Naomi - first and foremost is not to try herbal medicine (aka alternative medicine) without consulting with your doctor. Preferably a pediatric immunologist. Herbal supplements have been known to have harmful side effects in immune deficient patients. It brings on a type of altered reaction, instead of boosting and helping the immune system it mutates it and turns it against itself. It is a common treatment to use prophylactic antibiotics with immune deficient patients. Many times it is 2 or 3 antibiotics alternated every so many weeks so that resistance is cut down. My daughter has been on prophylactic Septra for 3 1/2 yrs now. She has also needed immune globulin replacement (IVIG) but the Septra has helped some with chest and UTI infections. Sinus infections are a common thing with IgA deficiency because the sinus cavities are lined with IgA, as is the mouth and stomach. My daughter has chronic sinus infections (always show infection on the CT's but isn't always symptomatic) and we use nasal irrigations with a sinus lavage machine. would be considered too young for this because there is some patient technique involved. Some nasal sprays help, and sometimes squirting sterile saline in the nose and suctioning out the secretions with a bulb syringe might help. Propping him up at night while he sleeps and feeding him in an inclined position (and not laying him down till 30 minutes after he eats) helps ward off ear infections in some babies. If your using formula, letting him nurse on a bottle at bedtime in the crib can pool formula in eustachian tubes sometimes and that might cause fluid build up on his ears. But basically the IgA just isn't there in his upper respiratory system to ward off infections and it just runs in cycles. Have you asked the doctor about the IgG results you saw? Has he mentioned a referral to an immunologist? -- Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2001 Report Share Posted November 25, 2001 << Have you asked the doctor about the IgG results you saw? Has he mentioned a referral to an immunologist? >> I did ask him about the IgG and the IgM results and got a wishy-washy answer. I was told " we're not focusing on that right now, just on the IgA. " I would really like to get to an immunologist, preferably one that has a pediatric clientile. He has not referred us to an immunologist and I definitely need a referral for my health insurance to cover it. Thank you for the tips about the alternative medicine. I nurse . I try to hold him in a more upright position during the day. At night, I really have no choice since I am so tired, I just lay on my bed and he lies next to me. Again, thanks for the advice. Hugs, Naomi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2001 Report Share Posted November 25, 2001 << Have you asked the doctor about the IgG results you saw? Has he mentioned a referral to an immunologist? >> I did ask him about the IgG and the IgM results and got a wishy-washy answer. I was told " we're not focusing on that right now, just on the IgA. " I would really like to get to an immunologist, preferably one that has a pediatric clientile. He has not referred us to an immunologist and I definitely need a referral for my health insurance to cover it. Thank you for the tips about the alternative medicine. I nurse . I try to hold him in a more upright position during the day. At night, I really have no choice since I am so tired, I just lay on my bed and he lies next to me. Again, thanks for the advice. Hugs, Naomi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2001 Report Share Posted November 25, 2001 Hi Naomi, WELCOME to the group ! My name is Barbie, my son Lucas is 5 and has been sick since the first week of his life with chronic ear, sinus etc. infections. He started out with IgA deficiencies but gradually moved into other forms of immunity problems. It is great you are breastfeeding your son. The immunity you are giving him is not available in formula so nurse as much into the 2nd year as possible. Each time you touch something you build antibodies to that bug that is given back to him in your milk for your more mature immune system. He is doing much than he would be if you were not nursing. With breastfeeding the mechanics of the nipple and aereola in the babies mouth fill up the mouth and close the eustian tubes to prevent the flow into the ears so it is not a concern to nurse him lying down.. Formula also is a foreign non living product that the body does not metabolize the same way as live breastmilk. So keep at it. I also wanted to try some more natural ways to help Lucas but became very leary about trying anything that boosts the immune system because it makes a malfuntioning system malfunction even further. It also seems that a visit to a Regional Pediatric hospital with an immunologist would be a good idea if you can get the referral set up. Ask your doctor to either refer you or ask him to call the Immune Deficiency Foundation docs to get a second opinon of his records. Living with children that have immune defiencies is challenging but I know this group has made it a much more bearable experience. I am a pediatric nurse as well as a lactation consultant but I am speaking based on experiences rather than on a medical level. Good Luck and continue to as questions. BARBIE Lucas,5 Dysgammaglobulinemia, low IgG, IgM, chronic sinus,ear infections. Asthma, sensory integrations dysfunction etc. IvIg since June 2000. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2001 Report Share Posted November 25, 2001 Hi Naomi, WELCOME to the group ! My name is Barbie, my son Lucas is 5 and has been sick since the first week of his life with chronic ear, sinus etc. infections. He started out with IgA deficiencies but gradually moved into other forms of immunity problems. It is great you are breastfeeding your son. The immunity you are giving him is not available in formula so nurse as much into the 2nd year as possible. Each time you touch something you build antibodies to that bug that is given back to him in your milk for your more mature immune system. He is doing much than he would be if you were not nursing. With breastfeeding the mechanics of the nipple and aereola in the babies mouth fill up the mouth and close the eustian tubes to prevent the flow into the ears so it is not a concern to nurse him lying down.. Formula also is a foreign non living product that the body does not metabolize the same way as live breastmilk. So keep at it. I also wanted to try some more natural ways to help Lucas but became very leary about trying anything that boosts the immune system because it makes a malfuntioning system malfunction even further. It also seems that a visit to a Regional Pediatric hospital with an immunologist would be a good idea if you can get the referral set up. Ask your doctor to either refer you or ask him to call the Immune Deficiency Foundation docs to get a second opinon of his records. Living with children that have immune defiencies is challenging but I know this group has made it a much more bearable experience. I am a pediatric nurse as well as a lactation consultant but I am speaking based on experiences rather than on a medical level. Good Luck and continue to as questions. BARBIE Lucas,5 Dysgammaglobulinemia, low IgG, IgM, chronic sinus,ear infections. Asthma, sensory integrations dysfunction etc. IvIg since June 2000. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2002 Report Share Posted February 21, 2002 In a message dated 2/21/2002 12:22:36 PM Eastern Standard Time, jschutt@... writes: > I have just joined this list and am not sure I belong here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2002 Report Share Posted February 21, 2002 Hi Julana, Your little reminds me quite a bit about my son Brook.Welcome to our group. Brook also had seizures when he was a baby and still is on medication for seizures. By the way Brook just turned 12 years. He had myoclonic seizures, which are similar to infantile spasms when he was around 1 year old. We also blamed a lot of his delays on the seizures. It now seems that the seizures can be one of the causes of autism. Have you seen Dr. Len Leshin's website? There is an article on DS and autism that mentions infantile spasms as being one of the causes of the onset of autism. Brook also did not make eye contact with people, loved to swing and loves water and music videos. Brook didn't walk until 3 yrs 8months. Does get physcial therapy? Hope to hear from you soon. Marisa Mom to Miles 15, Brook 12 and Genevieve 4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Hi . This might help with the boxes. packagingexpressions.com. They have all kinds of clear boxes. I'd sure like to know where you found the large powder puffs. Been looking for them for about a month now. Holly1 E-mail is holliberry1@... On Wed, 24 Jul 2002 22:51:18 -0700 (PDT) sandra s <naturalsilk2002@...> writes: Hi Everyone: My name is and I'm from the midwest. I manufacture my products for sale. I just want to introduce myself to the list. Thanks for having me. I do hope to be able to share and receive much info. However, today I need some help. Does anyone know where I can purchase large mouth powder containers for the big powder puffs I've located? I've tried .... but her product is believed to be a smaller mouth container. Also, in perusing the archives of this site and another I have been searching for a sterilizer for my creme containers. I have found info regarding a 'bar sanitizer' (not exactly sure what this is). At another list I found info on using sodium metabisulfite tablets to sterilize containers. Has anyone used either item to sterilize their products? LOL and a cheery smile!!! Also __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Thanks Holly, Regarding large powder puffs you may want to check the following sites: www.thaipuff.com www.homemadeO.tripod.com/ www.groovyplanet.com Allegresse >From: Hollice M <holliberry1@...> > I'd sure like to know where you >found the large powder puffs. Been looking for them for about a month _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 I would be interested in knowing where to find the large powder puffs, also. Thanks for all the great info! Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 And, thank YOU for your help Holly On Thu, 25 Jul 2002 19:11:36 +0000 " sandra s " <successforme30@...> writes: Thanks Holly, Regarding large powder puffs you may want to check the following sites: www.thaipuff.com www.homemadeO.tripod.com/ www.groovyplanet.com Allegresse >From: Hollice M <holliberry1@...> > I'd sure like to know where you >found the large powder puffs. Been looking for them for about a month _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 , glad to see you found the list! I had no idea that you lied in Stillwater! My best friend lived there for a long time-- I helped move her there when we got out of college and she got her first Graphic design job. Her parents still live in OKC. You'll find lots of helpful people on this list! You already know about my boys from the neutropenia list! ><>Pattie Quote Link to comment Share on other sites More sharing options...
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