Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 >>We are GFCF and mostly SF but am wondering if we should do enzymes instead. My son left gfcf with HNI enzymes, and he noticeably improved when he did so. So it is definitely something to consider. Many kids still need some type of diet, but still improve when given enzymes also. >>I think we have other issues going on as I had hoped his stimming would get better after we went GFCF and I guess it did for a while but it is really bad right now and has been since July. I know that when he stims so much he can't concentrate on what is going on in the classroom. If we can get that better controlled I know he could do so much better. > He has verbal, visual and a stim dance that he does. Since July is the first time we really noticed verbal stims. At my house, most verbal stims were caused by yeast overgrowth. Try increasing the yeast protocol, see if that helps. http://www.danasview.net/yeast.htm Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 Hi Deb, Welcome to the group. Your story is alarming, but not surprising. Im wondering about Insurance ? We have BXBS and behavioral therapy is 80% covered by it. Also, do you have a Case worker from MH Services who is assigned to your daughter ? You may be able to access services, like in-home family treatment, through them. Hope things calm down for you. PS.. ask your dh to try using a whisper voice instead... he might be surprised how much more effective it is. From: DEB <eskiegirl@...>Subject: ( ) New member Date: Tuesday, November 17, 2009, 12:26 PM Hi, I just want to introduce myself. My name is Deb, and I am a mother of a 9 yr. old daughter with aspergers. I also have a 11 yr old daughter who is fine, but struggles with her sister. I have an older sis w/ aspergers and her son is severly autistic, so you would think I could handle having a daughter with it, but some days I want to run away. I just am struggling with all of her issues.She thinks she can control everything, and I cannot get her to do anything. She beats her sister and me, and as far as her dad, he just screams at her and makes things worse. She is so clingy to me that I just can't stand it. If I do not get her out of bed in the morning, she will just scream my name until I do it. Well, let me tell you, I do not have all day to stand by her bed and wait until she is ready to get down. We want to do behavioral counselling w/ her, but cannot afford it. We make too much to qualify for assistance from the state, but with all of our bills(mainly my husband's new business venture, but that is another story), we cannot afford to pay for the counselling ourselves. I am stressed every day, and cry all the time. I love her so much, but she treats me soooo bad, and I don't know what to do. If anyone has any past experiences to share, or ideas on behaxior things, it would be great. She just refuses to do anything. I can hardly ever even get her to take a shower or brush her teeth.Sorry to ramble, but I am just looking for someone who understands what I am going through.Thanks,DebMichigan Mom of an aspie child------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2009 Report Share Posted November 22, 2009 Gosh Janice...so sorry for your troubles! I can't imagine how I would function at all without some kind of treatment and medication. I have just been put back on MTX to try to prevent joint damage. I had to be taken off it for 8 months while my pulmonary doctor and rheumy played phone and mail tag. Can you imagine a doctor who actually employed someone that took two months to transcribe one simple letter????? I can't...but that is what happened to me. I complained and raised Cain until they got their heads together and decided it was the Enbrel that caused my lung problems...or maybe in inopportune infection so I am back on MTX alone. It is beginning to help some though. I said all this to say....all the doctors are so different...my rheumy won't let me take ANYTHING but Tylenol along with the Darvocet N100 that I also take daily. I had liver issues with naproxyn, aspirin, Celebrex, Vioxx etc. I guess we just have to decide if we want quality of life versus quantity of life. Right now I am opting for the former. Good luck girl! Sharon Hanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2009 Report Share Posted November 22, 2009 Hi Sharon, Hey, interesting coincidence. . .my maiden name is Hanna and I have a cousin named Sharon. If your screen name is in any way indicative of the year you were born, she's about your age. (Or close, anyway.) Are you my cousin? I'd like to ask for a few prayers tomorrow from the group, if you don't mind. I'm headed to the community clinic tomorrow (Monday) at 1:30 to visit with a social worker. She will guide me through the process, to see if I qualify for free care. If my income is too high, they will send me elsewhere. Regardless, I'm excited to get the opportunity to go. Two questions. I hear you all talk a lot about MTX. What is that? Also, I see you talking about biologics. What are they? I'm glad someone mentioned the ulcerative colitis. I live with this (or something similar). A recent colonoscopy (when I had insurance) revealed several polyps, which were removed. By the way, I've been on the ganoderma products for a week and am feeling somewhat better. Not sure if it's the power of suggestion or the ganoderma, itself. A good friend sent me an article about how ganoderma is being used for autoimmune diseases. Interesting stuff. My son-in-law sells the stuff, so I bought some from him. Figured, " What the heck? " Ya know? I'm also on my MSM/glucosamine/Chondrotin mix, as well. Janice Hanna Note: Ganoderma is a mushroom that grows on trees. According to Wikipedia " Two medicinal mushroom polypores in use today are Ganoderma lucidum (reishi or lingzhi) and Trametes versicolor. Beyond their traditional use in herbal medicine, contemporary research has suggested many applications polypores for the treatment of illnesses related to the immune system and cancer recovery. " http://en.wikipedia.org/wiki/Polypore Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2009 Report Share Posted November 25, 2009 Hi Janice, Hanna is my married name and the 1946 is just a random number...sorry....but I can be your honorary cousin! MTX is methotrexate the chemo drug that was given years and years ago to cancer patients who also had arthritis and they found that it helped with their arthritis symptoms...or that was what I have been told. My dad had lung cancer and he was on MTX but it didn't help him sadly...and as far as I know he didn't have arthritis. I am sorry I just saw your note today...I hope your visit with the social worker went well. I will be praying for you for sure! That's what cousins do...even honorary cousins! Keep me posted! " hanna1946 " <hanna1946@...> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2009 Report Share Posted November 27, 2009 I hear you on stims and stim dance. Wish I too knew what to do. From: april.sweetpea <jnichols32@...> Subject: New member Date: Thursday, November 12, 2009, 8:04 AM  Hi, I am my son is 6 with autism. I recently attended an Autism Grassroots tour with my husband and he won a basket of Enzymedica enzymes(Digest Gold, GlutenEase, Gastro, CarbGest, EFA Optimize, Candidese and Virastop), two books on enzymes and one book on the Son-rise program. My son was diagnosed at 3 years with autism and also has epilepsy. Our seizures came first at 4 1/2 months of age. I am currently reading the Enzymes for Autism and other Neurological Conditions as that was one of the books we won. We are GFCF and mostly SF but am wondering if we should do enzymes instead. I know I shouldn't do everything at once and am trying to figure out what is going to produce the best results. I emailed his neurologist who is up on dietary and DAN information to get his opinion. I am members of several other as well, GFCFkids, GFCF recipes. How do you all get the enzymes in them at school? My son is in a reg. ed. class kindergarten class and I send his breakfast and lunch everyday. I would love for him to be able to eat real food again. His eating has expanded so much in the last year since going GFCF. I think we have other issues going on as I had hoped his stimming would get better after we went GFCF and I guess it did for a while but it is really bad right now and has been since July. I know that when he stims so much he can't concentrate on what is going on in the classroom. If we can get that better controlled I know he could do so much better. He has verbal, visual and a stim dance that he does. Since July is the first time we really noticed verbal stims. Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2009 Report Share Posted December 29, 2009 Hi , My daughter just turned five and is unofficially diagnosed with Aspergers. She is also very difficult. Lots of sensory issues, but what really brought us to this point of looking behond ourselves for answers was the continued rage, aggression, defiance and anit-social issues. Since we realize now that a lot of this behavior is 'chalked' up to being on the Autism spectrum and not just her strong will against ours and total rebellion and defiance against authority, it has helped us immensely. Aspergers is certainly not an excuse for bad behavior, but it does help to know we aren't just failing as parents! Recognizing the sensory issues that cause the difficulties has been huge for us. We are more on the offensive now instead of just defensive and trying to recover! There are still many days I think I'm not going to survive this child! She is our 7th and adopted. I'm not an expert, but I'm happy to share stories! ---------- Original Message ----------From: Mikaelian <cdnlilac@...> Subject: ( ) New memberDate: Tue, 29 Dec 2009 16:31:59 -0800 (PST) Hello, My name is . My daughter has been diagnosed with Social Communication Impairment and Sensory Processing DIfficulties, and neurologist told me to read up on Asperger's (psychological assessment still pending). She is almost 4 years old and is extremely difficult. She's so young, yet I see all the characteristics in her . Looking forward to this support network! Looking for the perfect gift? Give the gift of Flickr! ____________________________________________________________ NutritionImprove your career health. Click now to study nutrition! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2009 Report Share Posted December 30, 2009 Hello ! My name is Jenna and I have a 4 year old son who has been diagnosed with Aspergers P.D.D. I too just joined this support group in hope of getting some sort of encouragement and support. I being a single young mother am always looking for answers and support. My son also deals with the same factors that your daughter is currently dealing with. I started to notice at about two years of age, when he was hitting me, screaming, kicking, and beating himself for no reason at all. Alot of people say that they think its because he is spoiled, but thats definately not the case. My daughter and him got treated and still do get treated the same way and she never displayed the beahivors he displays. He also was diagnosed with O.D.D. oppositional defiance disorder. my son started seeing neurologist when he was only two and we had to first rule out terrible two's which we did. Then after the tests with his neurologist he started seeing a child psycologist. He went through a battery of tests through our local school corporation and they said with his unusally low scores to the Gilliam Aspergers test and the autism test as well as his comprehensive low battery test scores they couldn't diagnose him with anything. So I sent those test scores to his child psycologist that he normally sees and she was immediately able to diagnose him off of those test scores. The school psycologist couldn't where as his normal dr could. I don't understnad it. Anyway I don't mean to go on and on, i just thought I could share my story with you and let you know that I know what your going through and how difficult it is. We have good days and we have bad days but for the most part we try and make them good. It was nice talking to you and hope to hear some more from you soon! Thanks for listening! Sincerely, Jenna Aguilar From: Mikaelian <cdnlilac@...> Sent: Tue, December 29, 2009 7:31:59 PMSubject: ( ) New member Hello, My name is . My daughter has been diagnosed with Social Communication Impairment and Sensory Processing DIfficulties, and neurologist told me to read up on Asperger's (psychological assessment still pending). She is almost 4 years old and is extremely difficult. She's so young, yet I see all the characteristics in her . Looking forward to this support network! Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 Hello Friend you are not alone.Iam a single mom with a17yrs old ,so what i started to do was take away games, computer time anything he enjoyed.it started back we he was 12,so he will go for no longer than 2 days now,he does not leave the house except for group or to my games,we homeschool.keep steady and stay strong it will get better.Angel Blessings OH Welcome to the group From: hnybun72 <leah.elisheba@...>Subject: ( ) New Member Date: Monday, January 11, 2010, 11:57 AM Hi all, I am joining in desperation after having to drag my 13-year-old son into the shower last night, wash & dress him & then have his uncle come & help me drag him out to the car to get a haircut. In the process he broke a leg off a coffee table and beaned me in the skull with a bath brush. He does not leave the house willingly except to go to school and he only willingly bathes when his filth has reached the point of causing him to itch or feel pain. His father stands by and watches but only has 2 responses: either let him get away with whatever because it's too hard to fight the fight, or take off his belt & get physical. All I want is for my son to have basic personal hygiene. Please tell me I'm not alone! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 It's pretty common for boys this age to ignore hygiene. I would not recommend getting into any type of physical confrontation like the one you described.... there are NO winners in that. His own discomfort and the pressure of his peers will go a lot further than your interest in his cleanliness. With so many other very important hurdles to jump, I would let that one go. Wash his clothes, get him some cool body spray like AXE and some bath liquids.. and let the rest go... BE GLAD that he goes to school !!! For an Aspie, forcing them physically to do something is not the answer. From: hnybun72 <leah.elisheba@...>Subject: ( ) New Member Date: Monday, January 11, 2010, 10:57 AM Hi all, I am joining in desperation after having to drag my 13-year-old son into the shower last night, wash & dress him & then have his uncle come & help me drag him out to the car to get a haircut. In the process he broke a leg off a coffee table and beaned me in the skull with a bath brush. He does not leave the house willingly except to go to school and he only willingly bathes when his filth has reached the point of causing him to itch or feel pain. His father stands by and watches but only has 2 responses: either let him get away with whatever because it's too hard to fight the fight, or take off his belt & get physical. All I want is for my son to have basic personal hygiene. Please tell me I'm not alone!------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 I know that this is not going to be easy and there will be some drama at first but I would do this: First identify something important to your son that you can control. I will use as my example the computer which I can control by taking the power cord making it unusable. Notify your son that he must take a shower and get dressed before he can have the computer back. When he gets upset ( and he will ) stay very calm and repeat first you shower and dress and then you get the computer. When he argues and gets angry you will have to just ignore him or remind him again first shower then computer. After the first time I would set a schedule for bathing. To start I would take the amount of time he is currently going between showers and cut it in half. When the time comes for the next shower start over with the first/then. And then cut the time in half again. Eventually he will understand that if he wants the computer it is easier to just take the darn shower. Good luck. Vickie > > Hi all, I am joining in desperation after having to drag my 13-year-old son into the shower last night, wash & dress him & then have his uncle come & help me drag him out to the car to get a haircut. In the process he broke a leg off a coffee table and beaned me in the skull with a bath brush. He does not leave the house willingly except to go to school and he only willingly bathes when his filth has reached the point of causing him to itch or feel pain. His father stands by and watches but only has 2 responses: either let him get away with whatever because it's too hard to fight the fight, or take off his belt & get physical. All I want is for my son to have basic personal hygiene. Please tell me I'm not alone! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 I agree that forcing him to do anything won't accomplish anything in the long run. I don't know if he is hardcore about his hygene avoidance, but you might want to make a chart for him (aspies are very bad about planning anything for themselves) and if he gets his chart checked off, he can do whatever it is he is passionate about. You'll have to make the chart to cover quite a few things -toothbrushing, face washing, showering, underwear changing, cutting fingernails, etc. But once the chart works for a while, there is a possibility he'll start doing it himself without the reminders. Good luck. > > > From: hnybun72 <leah.elisheba@...> > Subject: ( ) New Member > > Date: Monday, January 11, 2010, 10:57 AM > > > Hi all, I am joining in desperation after having to drag my 13-year-old son into the shower last night, wash & dress him & then have his uncle come & help me drag him out to the car to get a haircut. In the process he broke a leg off a coffee table and beaned me in the skull with a bath brush. He does not leave the house willingly except to go to school and he only willingly bathes when his filth has reached the point of causing him to itch or feel pain. His father stands by and watches but only has 2 responses: either let him get away with whatever because it's too hard to fight the fight, or take off his belt & get physical. All I want is for my son to have basic personal hygiene. Please tell me I'm not alone! > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 I definitely struggle with consistency, mainly because I can't get my husband to follow my leads and then those times when you are just too mentally wiped out. But, I do my best. My little guy thrives on routine for at home. > > I have also just joined the group. My 9 year old grandson has AD, PDD-NOS, ADHD, OCD, ODD, Dyspraxia and possibly bipolar. He is in the 4th grade and has been in 6 different schools and was just recently hospitalized in a Mental Health Facility. He takes meds but nothing works. All the doctors do is keep changing his meds. He is now in an autism school that is funded by the school district. It has helped him somewhat and he is good academically but he has violent outbursts at the school and police reports have been made. The school is not allowed to restrain him. >  > My Son-in-Law, his father, gets him ready for school in the morning. Something that has worked somewhat is a helpful chart that the Social Worker from the school made for him, both for morning and when he comes home from school. The idea is that kids with these types of behavior do well with a definite schedule showing the time the child is to do certain things, like eating breakfast, getting dressed, etc, and some free time if they are ready before the van comes. The hard part is getting him to follow it. >  > As always, consistency and encouragement are the keys. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 I don't think that's too much to ask! Unfortunately, it is a tough one for many with AS/HFA. There are a lot of different reasons why, specific to each person. For example, my 13 yo ds (hfa) doesn't notice when he smells bad. He will go take a shower when asked though. It's hard to get him to do it every day like a habit but I think he will eventually get to that point. I've seen others struggle because their kid does not like how it feels to take a shower or a bath or has zero interest in the social responsibility of being clean. Or sometimes these overlap and you have more than one problem at once. You should try to figure out why he is not doing it and that can help you figure out how to get him to clean himself up. I was spoiled with my older ds (hfa also) because he was hypersensitive to smells and he LOVED being clean and smelling good. So he showered daily and still does. No reminders. But my 13 yo, as I said, doesn't notice at all. He doesn't have a problem taking a shower, though, so it's just a matter for reminders and routines and helping him learn to do this every day. Sometimes he gets lazy and I will say, " No store until everyone is showered, clean and ready to go. " A few times, I have had to push him in there if he won't get going and we have an appointment. (he has sleep problems, so getting up in a timely manner is difficult for him.) He's fairly agreeable though. So I can usually promise him something good at the end of the appointment if we get there in time and smell nice. For instance, " First we need to get cleaned up, then we need to be at Dr. H's by 10 a.m., then we can stop for lunch on the way home. " Letting him know the plan helps. But that is how he works, don't know if that applies to your teen. It can be helpful to learn to say, " First shower, then play with your friend. " or " First shower, then we can go to grandma's house. " This is a way to remind him of the good things that will happen once he gets the chore out of the way. Try to find some kind of reward that helps encourage him to do it. Talk to him about why he doesn't like doing it. Discuss reasons for not being the smelly kid (social, skin problems, etc.) If he showers every day for two days, he can have a video rental or trip to the rec center or what it is that interests him and that you can provide. Make a chart and use stickers so he can visualize his progress. As he meets with success, slowly increase the amount of days he has to be clean. Some kids do well with this kind of organization. Again, not sure from your post why your ds won't clean up and not sure what might motivate him. So these are all ideas you can think over and apply if one sounds like it might work. Also, someone wrote to make a list of things he needs to do to " be clean " , I thought, which is great advice. Sometimes the child/teen does not know how to manage the process of cleaning himself. What steps do you take to brush your teeth? This can sometimes cause problems. Or they define " being clean " differently than you do! So set your expectations down in writing. Number the process (1. put toothpaste on the toothbrush. 2. brush against all top teeth. 3. etc.) Some kids need that direction, even older kids. You say " wash your hair " but they don't know how to start the process or how to do it. When my ds was a bit younger, I was still washing his hair for him because he couldn't manage it himself - long after the age he " should know how to do that himself. " So if that might be causing problems, write it down and tape a card to the mirror or bath door or where it is easily accessible. Don't expect instant success. Pick small battles to start with and add more as you and he meet with success. Also, PRAISE any form of success. If he uses deodorant one day, let him know how great that was! Even if he forgot the shower to go with it. <g> I've had to do that before, lol. I've said, " Wow, I love how great that deodorant smells! But you really need to pair it with a shower first because it doesn't cover all the smells.... " I have seen schools (sped people) who have also worked on hygiene issues with the kids - kind of hitting the kid at both sides. I don't know what I think about that. One time they put a hygiene reminder on my older ds's agenda because they did that for the " other kid who had AS at the school " and the other kid was the smelly kid. lol. So I had to make them stop talking to my ds about how he smelled each day, even though he smelled fine. But it was embarrassing to him and not necessary either. Sometimes they take an idea and run with it. And if they had done this with my 13 yo (he e-schools now, so doesn't attend regular public school), he would have been mortified and dejected by having his hygiene analyzed daily. It would have embarrassed him but in a bad way, adding to his depression and not in a way that would help the situation. In a sense, it could be used as a negative behavior plan, which would not be good for many kids. I guess it depends on how it is set up and applied (like so many things!) So anyway, you have to figure out what might work with your ds. Good luck!! Roxanna " The only thing necessary for the triumph of evil is for good men to do nothing. " E. Burke ( ) New Member Hi all, I am joining in desperation after having to drag my 13-year-old son into the shower last night, wash & dress him & then have his uncle come & help me drag him out to the car to get a haircut. In the process he broke a leg off a coffee table and beaned me in the skull with a bath brush. He does not leave the house willingly except to go to school and he only willingly bathes when his filth has reached the point of causing him to itch or feel pain. His father stands by and watches but only has 2 responses: either let him get away with whatever because it's too hard to fight the fight, or take off his belt & get physical. All I want is for my son to have basic personal hygiene. Please tell me I'm not alone! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 If you are in the USA, then I would request a " functional behavior assessment " (FBA) be done on your ds. This assesses his behavior, just like the name suggests. More importantly, it looks at what is going on when the behavior is occurring and concludes why it is probably happening so that you can figure out ways to change or stop the behavior problem. Anytime a child's behavior affects his ability to learn, you can request an FBA to analyze what is going on. Then you meet with everyone and discuss ways to put together a behvaior plan (BP) (positive behavior plan, not a negative behavior plan) to work on improving the behavior. Roxanna " The only thing necessary for the triumph of evil is for good men to do nothing. " E. Burke ( ) New member Hi I am a single mom of 2 boys. My oldest was dx about 2 yrs ago. We knew something was different, just not sure what. The worst part of this has had to be in school. He has always attended public schools. He is going to be 10 soon so 4th grade. what a nightmare... It started in Pre-K. Thank God that was a private program & they worked with us. K was a nightmare. He had a very nasty teacher. i have noticed that if he doesn't like the teacher or vice-versa the behavior gets exceedingly worse. I don't want to discuss how many meetings we've had about " behavior " Ugh!! I got a progress report & his grades were all 90 & above except when it came to behavior. we got 65 in that. so yeah the gpa went down to an 88. Anyone else see a problem with this? Back to the school I go. lol. Thanks for letting me vent.h Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 I sure see a problem with it. Since when is " behavior " figured into a GPA? I always thought that a GPA was an overall aggregate of measured progress with classwork, mostly academic (i.e., music, gym, art, etc., are figured in, but often given less " weight " when calculating the overall total). Not to mention that since you have a child with a disability, he should be receiving accommodations to " level the playing field " and not be punished for actions/things caused by that disability. Does the deaf kid get points off of his/her " behavior " grade because s/he is not " listening and following verbal commands " ? Ask the school to see the papers, tests, etc., that objectively measure your DS's " behavior. " And, yes, as Roxanna said, request an FBA be done and a positive behavior intervention plan (BIP or BP) be implemented. The school should involve an autism expert for this. If the school does provide concrete data regarding your DS's behavior which shows it is not up to par, this only serves as proof that an FBA is needed. Regards, ( ) New member > Hi I am a single mom of 2 boys. My oldest was dx about 2 yrs ago. We > knew something was different, just not sure what. The worst part of this > has had to be in school. He has always attended public schools. He is > going to be 10 soon so 4th grade. what a nightmare... It started in > Pre-K. Thank God that was a private program & they worked with us. K was > a nightmare. He had a very nasty teacher. i have noticed that if he > doesn't like the teacher or vice-versa the behavior gets exceedingly > worse. I don't want to discuss how many meetings we've had about > " behavior " Ugh!! I got a progress report & his grades were all 90 & above > except when it came to behavior. we got 65 in that. so yeah the gpa went > down to an 88. Anyone else see a problem with this? Back to the school I > go. lol. Thanks for letting me vent.h > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2010 Report Share Posted February 7, 2010 Welcome to the group. My daughter wore a starband a few years ago and hers was just at or slightly above here eyebrows. If he's adjusted well that is one indication that the fit is good. ALso if you're seeing improvement that is another :-) I remember at our 2 week visit my daughter's measurements had already improved (she started wearing her band at 5 mo old when growth is pretty fast). Keep us posted on JD's progress. -christine sydney, 4yrs, starband grad > > Hi i am melissa and live in the north nj area. My son JD received his Starband about 2weeks ago. We had a little trouble in the begininng but now i think he got used to it. His band sits low on his face like right over his eyebrows...Is that the way its suppose to fit? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 Ditto! So nice to see your name Robbin! I don't know of anyone in MO. Sorry! How is ? How are you? Hi eceryone, I haven't posted in ages. My daughter, is a 7 yr old survivor. I run a program called 's Upside Down Ball. I just have received word of a new family in Missouri. Are any of you from that state? I am trying to pair them up. I will pass on this site too.Robbin Lyons Reply to sender | Reply to group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 I'm not, but just wanted to say how great it was to see your name in my inbox this morning!!! Miss ya! ~ [ ] new member Hi eceryone, I haven't posted in ages. My daughter, is a 7 yr old survivor. I run a program called 's Upside Down Ball. I just have received word of a new family in Missouri. Are any of you from that state? I am trying to pair them up. I will pass on this site too.Robbin Lyons Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2010 Report Share Posted March 24, 2010 I'm sorry you are dealing with this. I'm pretty new to this too. My son who just turned 13 was diagnosed in October, it started with the knee arthritis, swelling which the fluid drained was pos. for lyme. I was shocked, never had a tick on him, no rash, nothing. Now the spinal tap confirmed lyme meningitis. He was at opthamologist today for the headaches, eyes are good, must be from the lyme, neurologist, is doing brain MRI next week, gotta see rhumatologist for knees which get so bad he can barely walk. Between all that and infectious disease dr. now he broke his elbow last Sunday and we have orthopedist. Its a horrible disease, cant seem to get him in remission if thats what you would call it...I wish you the best. By the way, where do you live ? From: Pavone <pavone1@...> Subject: [ ] New member Date: Tuesday, March 23, 2010, 5:22 PM Hi I am a new member. After a couple of very weird months and too many doctors and ER visits my 12 year old was diagnosed with Lyme in February. He also shows exposure to 4 coinfections. He was initially put on Bactrim and was taking that for 3 weeks when we went to C.T. for a second opinion. The C.T. Dr. put him on zythromax, minicyclin and mepron. By the 5th day he was in so much pain he was writhing and his shortness of breath was worsening and he could no longer walk. Our C.T. Dr. told us to go to the E.R. to be evaluated for ascending neuropathy. He was admitted for 3 days and they did more tests and decided they didn't know what as wrong but it wasn't Lyme. After he returned home our C.T. Dr. told us to resume his meds. We couldn't. It was too scary and the Dr.s at the hospital were not fans of our C.T. Dr. besides we weren't able to see our C.T. Dr. again for months. We decided to pursue another Dr. this one will see us on a more regular basis and is starting my son off more slowly. After 10 days we are back up to 2 zythro a day but my son is still suffering terribly. I am desperate to know when can we excpect to see him turn a corner and to start improving? Any words of hope and encouragement or advice would be most appreciated!  Thank you!!    ------------------------------------ Lyme Disease News continually updated from thousands of sources around the net: http://www.topix.net/health/lyme-disease MedWorm: The latest items on: Lyme Disease http://tinyurl.com/23dgy8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2010 Report Share Posted March 24, 2010 Hello, I am so sorry to hear your son is suffering, and therefore so are you and the family. Many of us have experienced similar suffering. I'm glad you've found this group. They are a great supportive and informative group of people. My first thought is that those meds were too much to start your son on; however, I am certainly not a doctor. Our doc started on Zith for 3 wks before adding 1 or 2 other drugs. I think it's good that you've found another doctor whom you can see more often and will maybe go a little slower. It's a scary thing. Depending upon the symptoms, I saw some things begin to improve right away for me and my son (11, now 12), but then some things have not improved while others have gotten worse. I think it depends on what infection is being treated at the time because I believe infections can progress as other infections are treated. I think this was the case for me and Bartonella. The slowest symptoms to improve are neurological, in our experience. My son's stomach pains (Bartonella infection) probably took a few weeks to subside then maybe a few months to disappear altogether. I suspect the shortness of breath is Babesia and the Mepron would be targeting that. I didn't start on Mepron for several months into my treatment-- I think it's a hard hitting drug. It is quite common for symptoms to worsen as treatment begins or is modified (Herxing) but that sounds like a pretty severe herx. I'm sorry to say though that this all does take a very long time, especially when someone is quite sick. I have heard of good success for children so try to remain optimistic and focused on getting your child well. And, stay in touch with this group. It truly helps to hear from others who share the same experience. Hope that helps. Best wishes, Elaine ________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2010 Report Share Posted March 24, 2010 Hi thee -- My daughters have congenital Lyme. My older one had her first flare at age 8 but it got very bad at 10 1/2, when she was diagnosed with fibro. What a waste. This past August (at age 12 1/2) she was diagnosed with Lyme and coinfections (at least 2, possibly more). She started treatment with an overly aggressive LLMD in August. We switched her in October. She is back in school more or less full time as of end of January. She spent first semester sequestered in her room, in the dark, squirming with pain. It was horrible to watch. The treatment is working though. She did have a bad flare a week ago and has been at home since then, but the flares are no longer weeks and weeks long and when she is not in an actual flare she is doing great. When she started with her LLMD in October she could barely walk and had to be half-carried into the doctor's office. She is now running around, dancing, ice skating, etc. Still gets overtired more easily than a healthy child but nothing compared to the flattening exhaustion and pain she used to have all the time. Good luck. I promise, even if it takes some time, you will see a huge difference. My daughter had some luck with Neurontin and Cymbalta for pain. Natasha From: Pavone <pavone1 (DOT) com> Subject: [ ] New member Date: Tuesday, March 23, 2010, 5:22 PM Hi I am a new member. After a couple of very weird months and too many doctors and ER visits my 12 year old was diagnosed with Lyme in February. He also shows exposure to 4 coinfections. He was initially put on Bactrim and was taking that for 3 weeks when we went to C.T. for a second opinion. The C.T. Dr. put him on zythromax, minicyclin and mepron. By the 5th day he was in so much pain he was writhing and his shortness of breath was worsening and he could no longer walk. Our C.T. Dr. told us to go to the E.R. to be evaluated for ascending neuropathy. He was admitted for 3 days and they did more tests and decided they didn't know what as wrong but it wasn't Lyme. After he returned home our C.T. Dr. told us to resume his meds. We couldn't. It was too scary and the Dr.s at the hospital were not fans of our C.T. Dr. besides we weren't able to see our C.T. Dr. again for months. We decided to pursue another Dr. this one will see us on a more regular basis and is starting my son off more slowly. After 10 days we are back up to 2 zythro a day but my son is still suffering terribly. I am desperate to know when can we excpect to see him turn a corner and to start improving? Any words of hope and encouragement or advice would be most appreciated!  Thank you!!    ------------ --------- --------- ------ Lyme Disease News continually updated from thousands of sources around the net: http://www.topix. net/health/ lyme-disease MedWorm: The latest items on: Lyme Disease http://tinyurl. com/23dgy8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2010 Report Share Posted March 24, 2010 > > Hi I am a new member. After a couple of very weird months and too many doctors and ER visits my 12 year old was diagnosed with Lyme in February. He also shows exposure to 4 coinfections. > He was initially put on Bactrim and was taking that for 3 weeks when we went to C.T. for a second opinion. The C.T. Dr. put him on zythromax, minicyclin and mepron. By the 5th day he was in so much pain he was writhing and his shortness of breath was worsening and he could no longer walk. Our C.T. Dr. told us to go to the E.R. to be evaluated for ascending neuropathy. He was admitted for 3 days and they did more tests and decided they didn't know what as wrong but it wasn't Lyme. After he returned home our C.T. Dr. told us to resume his meds. We couldn't. It was too scary and the Dr.s at the hospital were not fans of our C.T. Dr. besides we weren't able to see our C.T. Dr. again for months. We decided to pursue another Dr. this one will see us on a more regular basis and is starting my son off more slowly. After 10 days we are back up to 2 zythro a day but my son is still suffering terribly. I am desperate to know when can we excpect to see him turn a > corner and to start improving? Any words of hope and encouragement or advice would be most appreciated! > > Thank you!! > Thank you for all your responses. I'm sorry that you are all watching your children suffer too. It is a comfort to know that there are other moms going through some of the same stuff and hearing that there are those of you who have children well on their way to recovery is most encouraging. I believe we are with the right Dr. now and my C.T. Dr. is willing to work with us and our new D.R. so it seems like the right choice for now. There is just so much uncertainty with this disease and the controversy surrounding it has been a battle as I'm sure many of you can relate to. While in the hospital the Dr.s were so opposed to our choice to treat that I was growing worried. Now back at home and continuing with treatment in spite of them it is scary, I know that this is the right decision but walking it out is tough. I understand this could be a long ride but I am anxious to see some lifting of the painful symptoms. It breaks my heart to see his brothers and sister out riding bikes and playing while he has literally been on the couch for over a month (except for the hospital or dr.s). We see the Dr. again on Monday and I am anxious to talk to him and a little nervous that he will increase his abx load. Thank you for mentioning the neurotonin and cymbalta i will mention it to our Dr.. Oh we live on Long Island. Have any of you used pesticides on your yard to ward of ticks? I am very concerned about our yard and wondering how to keep my kids safe . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2010 Report Share Posted March 24, 2010 > > Hello, > I am so sorry to hear your son is suffering, and therefore so are you and the family. Many of us have experienced similar suffering. I'm glad you've found this group. They are a great supportive and informative group of people. > > My first thought is that those meds were too much to start your son on; however, I am certainly not a doctor. Our doc started on Zith for 3 wks before adding 1 or 2 other drugs. I think it's good that you've found another doctor whom you can see more often and will maybe go a little slower. It's a scary thing. Depending upon the symptoms, I saw some things begin to improve right away for me and my son (11, now 12), but then some things have not improved while others have gotten worse. I think it depends on what infection is being treated at the time because I believe infections can progress as other infections are treated. I think this was the case for me and Bartonella. The slowest symptoms to improve are neurological, in our experience. My son's stomach pains (Bartonella infection) probably took a few weeks to subside then maybe a few months to disappear altogether. I suspect the shortness of breath is Babesia and the Mepron would be targeting > that. I didn't start on Mepron for several months into my treatment-- I think it's a hard hitting drug. It is quite common for symptoms to worsen as treatment begins or is modified (Herxing) but that sounds like a pretty severe herx. I'm sorry to say though that this all does take a very long time, especially when someone is quite sick. I have heard of good success for children so try to remain optimistic and focused on getting your child well. And, stay in touch with this group. It truly helps to hear from others who share the same experience. > > Hope that helps. Best wishes, > Elaine > > > > > > ________________________________ > > Hi Elaine, Thank you for your response. I'm sorry to hear you and your son are suffering too. I am very thankful I found this group, it is good to hear from those who have experienced some of the same stuff. I would agree with you about the meds, it was just too much at once for my son. My sons pain is still pretty intense and his fatigue is debilitating but after reading your reply and thinking back there have been some signs of improvement. His " eye ticks " which had become quite severe have disappeared and he is complaining less about his light and sound sensitivity. He may even be slightly less nauseas. I'm going to hold onto these signs of hope and continue to look for more. I guess this will be a long road, thank you for helping me to look a bit more carefully. , > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 I think there is a company called New York Tick Control that helps with preventing ticks in the yard. Dara > > > > Hello, > > I am so sorry to hear your son is suffering, and therefore so are you and the family. Many of us have experienced similar suffering. I'm glad you've found this group. They are a great supportive and informative group of people. > > > > My first thought is that those meds were too much to start your son on; however, I am certainly not a doctor. Our doc started on Zith for 3 wks before adding 1 or 2 other drugs. I think it's good that you've found another doctor whom you can see more often and will maybe go a little slower. It's a scary thing. Depending upon the symptoms, I saw some things begin to improve right away for me and my son (11, now 12), but then some things have not improved while others have gotten worse. I think it depends on what infection is being treated at the time because I believe infections can progress as other infections are treated. I think this was the case for me and Bartonella. The slowest symptoms to improve are neurological, in our experience. My son's stomach pains (Bartonella infection) probably took a few weeks to subside then maybe a few months to disappear altogether. I suspect the shortness of breath is Babesia and the Mepron would be targeting > > that. I didn't start on Mepron for several months into my treatment-- I think it's a hard hitting drug. It is quite common for symptoms to worsen as treatment begins or is modified (Herxing) but that sounds like a pretty severe herx. I'm sorry to say though that this all does take a very long time, especially when someone is quite sick. I have heard of good success for children so try to remain optimistic and focused on getting your child well. And, stay in touch with this group. It truly helps to hear from others who share the same experience. > > > > Hope that helps. Best wishes, > > Elaine > > > > > > > > > > > > ________________________________ > > > > Hi Elaine, > > Thank you for your response. I'm sorry to hear you and your son are suffering too. I am very thankful I found this group, it is good to hear from those who have experienced some of the same stuff. > > I would agree with you about the meds, it was just too much at once for my son. My sons pain is still pretty intense and his fatigue is debilitating but after reading your reply and thinking back there have been some signs of improvement. His " eye ticks " which had become quite severe have disappeared and he is complaining less about his light and sound sensitivity. He may even be slightly less nauseas. I'm going to hold onto these signs of hope and continue to look for more. I guess this will be a long road, thank you for helping me to look a bit more carefully. > > , > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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