Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 Sorry to confuse you. Yes, on the band. They need to make sure it fits properly before you leave. Didn't shave the head. From: hibbs82879@... <hibbs82879@...>Subject: Re: new to the groupPlagiocephaly Date: Thursday, August 20, 2009, 9:47 AM thanks!!! i amsure i will have more to say/ask when she gets it. what do you mean shaved one area down? on the band?thanks,karen> > > From: hibbs82879@. .. <hibbs82879@ ...>> Subject: new to the group> Plagiocephaly> Date: Wednesday, August 19, 2009, 10:10 PM> > > > > > > i am new to this group...my daughter Emma will be getting her band in 2 weeks...any advice for me/us? i am very nervous. she is 6 months old and i am told she will need it for 3-4 months. thanks!> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2009 Report Share Posted August 21, 2009 My son just graduated from his DOC band a few weeks ago. Whoooohooo!! He started at 6 months and I was told to expect a minimum of 3 months. It turns out he only needed it for 6 weeks!! He had so many growth spurts during those 6 weeks that that was all it took. I have to admit, it was a pretty tough the first two days in the band. He hated it and would cry and cry at night. I was counseled to leave it on though. I just about killed me. After about 2 days and nights he finally got more adjusted to it and by the end of the first week, he was totally fine with it. I have to admit, I didn't have it on the whole 23 hours like they say....I would give him about a 2 hour break in the AM when he woke up and then a 2 hour break in the late afternoon before bed. he looks sooooo much better now though. Hang in there...you will be so glad you did it! > > i am new to this group...my daughter Emma will be getting her band in 2 weeks...any advice for me/us? i am very nervous. she is 6 months old and i am told she will need it for 3-4 months. thanks! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2009 Report Share Posted August 21, 2009 thank you so much for writing this! i am very nervous about it all and how she will react to it...after reading this i know what to expect a little more. congrats to you and your son! > > > > i am new to this group...my daughter Emma will be getting her band in 2 weeks...any advice for me/us? i am very nervous. she is 6 months old and i am told she will need it for 3-4 months. thanks! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2009 Report Share Posted August 21, 2009 Congrats to you and your son. That is awesome it only took six weeks. My son is six months today and we started this process on Monday. We are actually going to CT today because he had a red spot that didn't go away for hours. My opinion his head grew because there are no open spots in the helmet. We'll see. I hope my son doesn't have to wear it for 3-4 months or has to get a second band. Did your son need a second band??? From: a_dauterive <alexia@...>Subject: Re: new to the groupPlagiocephaly Date: Friday, August 21, 2009, 9:04 AM My son just graduated from his DOC band a few weeks ago. Whoooohooo!! He started at 6 months and I was told to expect a minimum of 3 months. It turns out he only needed it for 6 weeks!! He had so many growth spurts during those 6 weeks that that was all it took. I have to admit, it was a pretty tough the first two days in the band. He hated it and would cry and cry at night. I was counseled to leave it on though. I just about killed me. After about 2 days and nights he finally got more adjusted to it and by the end of the first week, he was totally fine with it. I have to admit, I didn't have it on the whole 23 hours like they say....I would give him about a 2 hour break in the AM when he woke up and then a 2 hour break in the late afternoon before bed. he looks sooooo much better now though. Hang in there...you will be so glad you did it!>> i am new to this group...my daughter Emma will be getting her band in 2 weeks...any advice for me/us? i am very nervous. she is 6 months old and i am told she will need it for 3-4 months. thanks!> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2009 Report Share Posted August 21, 2009 My son started his band with Hanger at 6.5 months old and so far we've been in it for 5 weeks and have had a great experience. He adjusted immediately, he has never even seemed to notice it, even in the 110 degree Phoenix heat! At our 3 week checkup he measured 8mm, down from an original measurement of 14mm! Our projected wear time is 3 months but could possibly be even sooner depending on how fast he grows. I do miss hugging him closely and sometimes the band bangs into your head so watch out (!) but overall just relax and know that you will get results and it's not as bad as it seems. And as far as cleaning the Hanger instructions have worked very well for us: I wash the interior with a toothbrush and Dawn liquid soap once a day and tap a little J & J Baby powder pure cornstarch inside after it dries and we have had no problems with odor. In the end I know we will be so happy we did it, and this will pass before you know it, so hang in there. Good luck! > > > > > > i am new to this group...my daughter Emma will be getting her band in 2 weeks...any advice for me/us? i am very nervous. she is 6 months old and i am told she will need it for 3-4 months. thanks! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2009 Report Share Posted August 21, 2009 The instructions for the Hanger band specifically say not to use water when cleaning:http://www.hanger.com/ThePatientExperience/Pediatrics/Pages/Plagiocephaly.aspxHow do I clean the Hanger Cranial Band?The soft foam lining of the Hanger Cranial Band does not absorb water or perspiration. It should be cleaned daily with a cloth dampened with rubbing alcohol. Do not use soap and water; soap residue can lead to skin irritations. To help prevent irritations please make certain the band is completely dry prior to putting it on your baby.MollyOn Aug 21, 2009, at 3:16 PM, "remydublin" <jenferia@...> wrote:My son started his band with Hanger at 6.5 months old and so far we've been in it for 5 weeks and have had a great experience. He adjusted immediately, he has never even seemed to notice it, even in the 110 degree Phoenix heat! At our 3 week checkup he measured 8mm, down from an original measurement of 14mm! Our projected wear time is 3 months but could possibly be even sooner depending on how fast he grows. I do miss hugging him closely and sometimes the band bangs into your head so watch out (!) but overall just relax and know that you will get results and it's not as bad as it seems. And as far as cleaning the Hanger instructions have worked very well for us: I wash the interior with a toothbrush and Dawn liquid soap once a day and tap a little J & J Baby powder pure cornstarch inside after it dries and we have had no problems with odor.In the end I know we will be so happy we did it, and this will pass before you know it, so hang in there. Good luck!i am new to this group...my daughter Emma will be getting her band in 2 weeks...any advice for me/us? i am very nervous. she is 6 months old and i am told she will need it for 3-4 months. thanks!------------------------------------For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2009 Report Share Posted August 23, 2009 Hi, my son ely was banded 3 weeks ago. The first 5 days was pretty tough on me. The baby wasnt that uncomfortable, but i was. It is bearable. The first few days i was about to quit the helmet. But then my baby got well adjusted pretty quickly. Hang in there. You can see results very quick if u abide by the rules and wear it 23 hours a day. good luck miriam > > i am new to this group...my daughter Emma will be getting her band in 2 weeks...any advice for me/us? i am very nervous. she is 6 months old and i am told she will need it for 3-4 months. thanks! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2009 Report Share Posted September 1, 2009 Hi and welcome, this is a great group. Some RA patients notice differences in disease activity in response to certain foods, so it can't hurt to keep a food diary and see if anything triggers an increase in pain. I don't really notice much connection, but I think everyone is unique. Hang in there. You are going through the worst part, when you have scary, painful symtpoms and no firm cause or treatment plan. The right rheumatologist can be your partner on this journey. You might want to set up another appt so you can interview a couple of rheums to find the one who is right for you. Try to get rest and activity when you're able. Water exercise can really be a godsend. Best, Kate F ________________________________ From: cjsc91128 <cjsc91128@...> Sent: Tuesday, September 1, 2009 1:49:10 PM Subject: [ ] New to the group  Hi everyone, I'm new to the group and haven't actually gotten my dx yet. I have a neuroma in my right foot and went to a doctor after about a 3 month flare up that wouldn't subside. I thought the tenderness in my knees and wrist might be related but the blood work came back with a rhumetoid factor of over 600. So, she referred me to a rhumetologist which I won't get to see until September 22. Searching the internet for information, I found you. I must say, reading through the messages I'm becoming more alarmed by the minute. Right now, the steroids have relieved the pain everywhere, shrunk the pinched nerve in my foot, and the only discomfort that has returned is in my right wrist. What can I do in the meantime to reduce the inflammation and flare up that will inevitably return before I can get to the doctor? I read a mention about changing our diets? Thanks in advance for any direction/guidance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2009 Report Share Posted September 1, 2009 Hi ! Welcome to our group!!  Kate is right on the mark about talking to other RA docs - I've just gone through that and it is of the upmost importance to feel that you relate with your doc. If you don't - you are wasting your time as well as the doc's. This group helped me with finding 2 fantastic websites: www.ratemds.com & www.vitals.com - you type in the type physician & state, etc - then you can read where the doc did their schooling, their residency and even see possible comments from patients. It will sometimes show their school ranking. Add that to referrals from friends, other doc, etc. if you can - even review what you have selected with your PCP if you want.  If I can just add to a great comment Kate made - the food diary is great - some of us see a relationship between some foods that you'd never imagine - others don't. Add to that though - the type of weather you are experiencing. Weather changes effect a lot of us and many of us - No. I personally see patterns in both. As far as I know, finding patterns doesn't cure it ( I WISH!) but it sure can help you navigate thru all of the " muddy waters " of RA! Keep us posted and again....Welcome! in SC From: Fair <kalfoley@...> Subject: Re: [ ] New to the group Date: Tuesday, September 1, 2009, 4:24 PM  Hi and welcome, this is a great group. Some RA patients notice differences in disease activity in response to certain foods, so it can't hurt to keep a food diary and see if anything triggers an increase in pain. I don't really notice much connection, but I think everyone is unique. Hang in there. You are going through the worst part, when you have scary, painful symtpoms and no firm cause or treatment plan. The right rheumatologist can be your partner on this journey. You might want to set up another appt so you can interview a couple of rheums to find the one who is right for you. Try to get rest and activity when you're able. Water exercise can really be a godsend. Best, Kate F ____________ _________ _________ __ From: cjsc91128 <cjsc91128 (DOT) com> @gro ups.com Sent: Tuesday, September 1, 2009 1:49:10 PM Subject: [ ] New to the group  Hi everyone, I'm new to the group and haven't actually gotten my dx yet. I have a neuroma in my right foot and went to a doctor after about a 3 month flare up that wouldn't subside. I thought the tenderness in my knees and wrist might be related but the blood work came back with a rhumetoid factor of over 600. So, she referred me to a rhumetologist which I won't get to see until September 22. Searching the internet for information, I found you. I must say, reading through the messages I'm becoming more alarmed by the minute. Right now, the steroids have relieved the pain everywhere, shrunk the pinched nerve in my foot, and the only discomfort that has returned is in my right wrist. What can I do in the meantime to reduce the inflammation and flare up that will inevitably return before I can get to the doctor? I read a mention about changing our diets? Thanks in advance for any direction/guidance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2009 Report Share Posted September 1, 2009 , Unfortunately, it often does take a while to get in for a first visit with a rheumatologist. You might call and ask them to put you on a cancellation list. Then if someone cancels, you could get in earlier. In the meantime, you might ask the doctor who referred you to prescribe a low dose of prednisone while you're waiting. It has a lot of bad side effects, but a low dose for a short while should not harm you. I've never seen a relationship between my RA and my diet. Sue On Sep 1, 2009, at 2:49 PM, cjsc91128 wrote: > Hi everyone, > I'm new to the group and haven't actually gotten my dx yet. I have > a neuroma in my right foot and went to a doctor after about a 3 > month flare up that wouldn't subside. I thought the tenderness in my > knees and wrist might be related but the blood work came back with a > rhumetoid factor of over 600. So, she referred me to a rhumetologist > which I won't get to see until September 22. Searching the internet > for information, I found you. > I must say, reading through the messages I'm becoming more alarmed > by the minute. Right now, the steroids have relieved the pain > everywhere, shrunk the pinched nerve in my foot, and the only > discomfort that has returned is in my right wrist. > What can I do in the meantime to reduce the inflammation and flare > up that will inevitably return before I can get to the doctor? I > read a mention about changing our diets? > Thanks in advance for any direction/guidance. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 Hi Jen, sorry that you had to join this group, but I agree, it is a great place to be when you have CML! I have two questions for you. 1. How low is your WBC? A low wbc count is normal for someone starting out on Gleevec. My first ONC did not know this and panicked over my low counts. I was started, stopped, raised and lowered so many times I felt like a Yo-Yo (no comments from my fans please! LOL) 2. How much experience does this doctor have with CML and Gleevec? This is an important question and related to the first. If doctors don't understand some of the peculiarities of Gleevec they might do more harm than good. I had to change my ONC early on. My first did not know much (he was open to learning when I brought him data from Dr. Drucker (did I spell his name right... blame it on CRS) but he was way behind the curve.) I'm sure you will get a lot more good input here. You might let us know a little more about yourself. Troxel On Wed, Sep 9, 2009 at 7:56 PM, jms30@... <jms30@...> wrote: > > > I am new to the group. I was diagnosed with CML in May of this year. > Totally caught me by surprise. I started Gleevec on May 31, 2009. At the end > of June my levels were normal. When I went for my next appt on August 28, > 2009, my hemoglobin was 5.8. I received a Procrit shot and told to come back > in 2 weeks for another one. I called the Dr. the next Thursday and told them > to recheck. My hemoglobin was the same but my wbc count was low. The Dr. > ordered me off of Gleevec for a week. I go back on Friday for another blood > draw and another Procrit shot. My emotions have been up and down with this. > I know my hemoglobin is coming up as I don't feel so tired anymore. > > I am glad that I found this group. > > Jen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 HI JEN, WELCOME TO OUR GROUP. I WAS DX IN 1995, AND AM ONE OF THE OLD TIMERS OF THE GROUP, I'M 79. AS RICHARD STATED, IT IS VERY IMPORTANT TO HAVE A GOOD CML DOCTOR IF IT IS AT ALL POSSIBLE, CML IS A RARE DISEASE, AND YOUR AVERAGE DOCTOR MAY NEVER EVEN HAD A PATIENT WITH IT,. BUT THERE ARE LOTS OF PEOPLE ON THIS SITE THAT WILL HELP YOU WITH ANY PROBLEMS YOU MAY HAVE, HELP YOUR DOCTOR TOO!!  BLESSINGS, BOBBY a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 -  Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan 06/02/08 - CCR ( in 4 weeks) 02/13/09 - XL trial ended due to side effects 04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz  From: jms30@... <jms30@...> Subject: [ ] new to the group Date: Wednesday, September 9, 2009, 10:56 PM  I am new to the group. I was diagnosed with CML in May of this year. Totally caught me by surprise. I started Gleevec on May 31, 2009. At the end of June my levels were normal. When I went for my next appt on August 28, 2009, my hemoglobin was 5.8. I received a Procrit shot and told to come back in 2 weeks for another one. I called the Dr. the next Thursday and told them to recheck. My hemoglobin was the same but my wbc count was low. The Dr. ordered me off of Gleevec for a week. I go back on Friday for another blood draw and another Procrit shot. My emotions have been up and down with this. I know my hemoglobin is coming up as I don't feel so tired anymore. I am glad that I found this group. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 --- Hi Jen: I also am sorry to see you had to join a group for CML, but your off to a great start by joining. Everyone is so supportive, and we even have time for some laughs to keep us positive. I totally agree with the other responses. Be sure that you have a doctor who specializes in CML. So many doctors do not know enough about Gleevec etc. My WBC runs as low as the 3 and 4 range, therefore, what is your WBC. Ask anything at anytime. We have some long time warriors on here who have dealt with every possible problem you can think of. I was diagnosed in 1998, and doing just fine. Welcome to Our Group In , " jms30@... " <jms30@...> wrote: > > I am new to the group. I was diagnosed with CML in May of this year. Totally caught me by surprise. I started Gleevec on May 31, 2009. At the end of June my levels were normal. When I went for my next appt on August 28, 2009, my hemoglobin was 5.8. I received a Procrit shot and told to come back in 2 weeks for another one. I called the Dr. the next Thursday and told them to recheck. My hemoglobin was the same but my wbc count was low. The Dr. ordered me off of Gleevec for a week. I go back on Friday for another blood draw and another Procrit shot. My emotions have been up and down with this. I know my hemoglobin is coming up as I don't feel so tired anymore. > > I am glad that I found this group. > > Jen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 I found right away that my Dr. is not up to speed on CML. I ventured out to Seattle in June and visitied Dr. sdorf at the SCCA. He is wonderful and gave me a lot of insight about CML and my prognosis. I am headed to a teaching hospital in Chicago in 2 weeks to talk with a Dr there. (I was refered to him by the Dr in Seattle) I feel like I am teaching the Dr that I have now. I am not sure at this moment what my wbc count was. I go back to the Dr tomorrow to re-check everything and get another Procrit shot. About me.....I am a 36 year old mother of 4. I have a 14(almost 15)year old daughter, an 8 year old daughter, a 5 year old son and a 2(almost 3) year old daughter. They keep me extremely busy. My poor husband and son! They are surrounded by hormones. At least the dog is a male. I am very fortunate to have very supportive family and friends. They are all amazing. I am so happy that I found this group. I have read a lot of the posts and have learned a lot already. > > > > I am new to the group. I was diagnosed with CML in May of this year. Totally caught me by surprise. I started Gleevec on May 31, 2009. At the end of June my levels were normal. When I went for my next appt on August 28, 2009, my hemoglobin was 5.8. I received a Procrit shot and told to come back in 2 weeks for another one. I called the Dr. the next Thursday and told them to recheck. My hemoglobin was the same but my wbc count was low. The Dr. ordered me off of Gleevec for a week. I go back on Friday for another blood draw and another Procrit shot. My emotions have been up and down with this. I know my hemoglobin is coming up as I don't feel so tired anymore. > > > > I am glad that I found this group. > > > > Jen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2009 Report Share Posted September 11, 2009 Hi Jen: Glad you are following up wherever you feel necessary. Sounds like you have a very nice family and supportive husband. That helps more than anything. I know from experience and the support and care I have gotten from my husband and family. It really helps with your day to day challenges. Keep in Touch, and let us all know how your doing. God Bless Suzzie From: jms30@... <jms30@...> Subject: [ ] Re: new to the group Date: Thursday, September 10, 2009, 6:12 PM  I found right away that my Dr. is not up to speed on CML. I ventured out to Seattle in June and visitied Dr. sdorf at the SCCA. He is wonderful and gave me a lot of insight about CML and my prognosis. I am headed to a teaching hospital in Chicago in 2 weeks to talk with a Dr there. (I was refered to him by the Dr in Seattle) I feel like I am teaching the Dr that I have now. I am not sure at this moment what my wbc count was. I go back to the Dr tomorrow to re-check everything and get another Procrit shot. About me.....I am a 36 year old mother of 4. I have a 14(almost 15)year old daughter, an 8 year old daughter, a 5 year old son and a 2(almost 3) year old daughter. They keep me extremely busy. My poor husband and son! They are surrounded by hormones. At least the dog is a male. I am very fortunate to have very supportive family and friends. They are all amazing. I am so happy that I found this group. I have read a lot of the posts and have learned a lot already. > > > > I am new to the group. I was diagnosed with CML in May of this year. Totally caught me by surprise. I started Gleevec on May 31, 2009. At the end of June my levels were normal. When I went for my next appt on August 28, 2009, my hemoglobin was 5.8. I received a Procrit shot and told to come back in 2 weeks for another one. I called the Dr. the next Thursday and told them to recheck. My hemoglobin was the same but my wbc count was low. The Dr. ordered me off of Gleevec for a week. I go back on Friday for another blood draw and another Procrit shot. My emotions have been up and down with this. I know my hemoglobin is coming up as I don't feel so tired anymore. > > > > I am glad that I found this group. > > > > Jen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2009 Report Share Posted December 6, 2009 Welcome. You will bless the day you joined us. Raniolo From: mydogrunsmyhouse <bj_clegg@...> Subject: [ ] New to the group Date: Sunday, December 6, 2009, 3:16 AM  Hello everyone! My name is Barbara and I'm new to the group so I wanted to just jump in here and say " hi and hello " to all of you! I'm also new to RA although my doctor had suspected it for many years. So now I'm trying to take in a whole lot of information and figure out how to apply it to myself. You've all been there so I'm sure you know exactly what I mean. Well, I'll probably lurk in the shadows for a little while until I get the " feel " of the board and hopefully be able to offer a little bit to the conversation as well. Everybody take care and it's great to meet you! Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2009 Report Share Posted December 6, 2009 Hi Barbara: You have have done the best thing for yourself by joining our wonderful group. I would be lost without all of them. You get support, advice, able to vent, and most of all, love and caring.  I was sorry to read that RA reared its ugly head on you. I have had RA for 6+ years. I do know what you are dealing with each and every day of your life.  Take care of yourself, and rest as much as you can. Nice to meet you.  Hugs,  Barbara From: mydogrunsmyhouse <bj_clegg@...> Subject: [ ] New to the group Date: Sunday, December 6, 2009, 3:16 AM  Hello everyone! My name is Barbara and I'm new to the group so I wanted to just jump in here and say " hi and hello " to all of you! I'm also new to RA although my doctor had suspected it for many years. So now I'm trying to take in a whole lot of information and figure out how to apply it to myself. You've all been there so I'm sure you know exactly what I mean. Well, I'll probably lurk in the shadows for a little while until I get the " feel " of the board and hopefully be able to offer a little bit to the conversation as well. Everybody take care and it's great to meet you! Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2009 Report Share Posted December 6, 2009 Hello Barbara, I am glad you have joined this group buut sorry about the circumstances that led you here. I have found the group to be most helpful to me & know that you will too. Hope you feel better soon, Connie From: mydogrunsmyhouse <bj_clegg@...> Subject: [ ] New to the group Date: Sunday, December 6, 2009, 3:16 AM  Hello everyone! My name is Barbara and I'm new to the group so I wanted to just jump in here and say " hi and hello " to all of you! I'm also new to RA although my doctor had suspected it for many years. So now I'm trying to take in a whole lot of information and figure out how to apply it to myself. You've all been there so I'm sure you know exactly what I mean. Well, I'll probably lurk in the shadows for a little while until I get the " feel " of the board and hopefully be able to offer a little bit to the conversation as well. Everybody take care and it's great to meet you! Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2010 Report Share Posted March 14, 2010 Hi, Oriana. Welcome to the group! I hope you find it helpful and beneficial to you and your son. I have three boys on the protocol. One of them, my Asperger's kid, has horrible eczema. He even gets it on his eyelids. Dr. G's protocol has gone a long way in improving his condition. It is definitely food related with him, especially peanut butter, eggs and casein. Regarding the virus, all three of my boys have HHV6 and it can reside in the brain causing behavioral problems, speech and language problems, attention issues, etc. Valtrex is a good med for some and not so good for others. It also has to be given in a strong enough dose to combat the virus. So far, acyclovir has been great for us. If you have any questions, please don't hesitate to post. The people on this list are very knowledgeable. All the best, Robyn ________________________________ From: Oriana <ovaldes82@...> Sent: Sun, March 14, 2010 10:09:21 AM Subject: New to the Group Hi- I'm new to the group and would like to introduce myself. My son is 13 years old and moderately affected, he is verbal but not conversational. We have been on the biomedical wagon for about 5 years with little improvements. The reason I'm interested in this protocol is because my son hasn't been sick for years, as long as I remember he's had a rash on his back, legs and back of arms that looks like a mild eczema, he participated in Dr. McCandles LDN study and she suggested after looking at his results that he might have a brain virus usually in the herpes family. He was on valtrex years ago but did not see any improvements. I'm am feeling discouraged this days because I see my beautiful baby already a teenager and sooo.. behind in everything. I'm going to make an appointment with Dr. Goldberg because I have a good feeling about this protocol. I pray that it will help my son heal. I'm looking forward to learn from all of you. Oriana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2010 Report Share Posted March 14, 2010 Hello, Your son's symptoms sound just my son's - the eczema, verbal but not socially great. Consequently, I recently found out that I have a very high HHV6 and EBV antibody count (both of those viruses are in the herpes family.) I'm am wondering if I passed this onto my son, either in utero or by genetic predisposition! I think I am going to have his antibodies tested. Bridget From: Oriana <ovaldes82@...> Subject: New to the Group Date: Sunday, March 14, 2010, 1:09 PM  Hi- I'm new to the group and would like to introduce myself. My son is 13 years old and moderately affected, he is verbal but not conversational. We have been on the biomedical wagon for about 5 years with little improvements. The reason I'm interested in this protocol is because my son hasn't been sick for years, as long as I remember he's had a rash on his back, legs and back of arms that looks like a mild eczema, he participated in Dr. McCandles LDN study and she suggested after looking at his results that he might have a brain virus usually in the herpes family. He was on valtrex years ago but did not see any improvements. I'm am feeling discouraged this days because I see my beautiful baby already a teenager and sooo.. behind in everything. I'm going to make an appointment with Dr. Goldberg because I have a good feeling about this protocol. I pray that it will help my son heal. I'm looking forward to learn from all of you. Oriana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2010 Report Share Posted March 14, 2010 Dear Oriana.  Doctor Goldberg will help you heal your son and will point you in the right direction as far as advice for your son. It is up to us (especially with kids that haven't come along as easy, like mine) to either do it yourself or hire help to fill in the gaps with language, pragmatics, self-awareness, and catch up for whatever your son may be behind in school.  I also suggest purchasing a book on  floortime, products through Linguisystems, Great Ideas for Teaching,Remedia Publications, Gander Publishing, or Bright Apple.  I think you made a great choice and I wish you the best.  Lynn From: Oriana <ovaldes82@...> Subject: New to the Group Date: Sunday, March 14, 2010, 1:09 PM  Hi- I'm new to the group and would like to introduce myself. My son is 13 years old and moderately affected, he is verbal but not conversational. We have been on the biomedical wagon for about 5 years with little improvements. The reason I'm interested in this protocol is because my son hasn't been sick for years, as long as I remember he's had a rash on his back, legs and back of arms that looks like a mild eczema, he participated in Dr. McCandles LDN study and she suggested after looking at his results that he might have a brain virus usually in the herpes family. He was on valtrex years ago but did not see any improvements. I'm am feeling discouraged this days because I see my beautiful baby already a teenager and sooo.. behind in everything. I'm going to make an appointment with Dr. Goldberg because I have a good feeling about this protocol. I pray that it will help my son heal. I'm looking forward to learn from all of you. Oriana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2010 Report Share Posted March 15, 2010 Interesting that you should ask that, Bridget. Both my husband and I have HHV6 and EBV and are being treated by Dr. G. I do believe it has to do with a genetic predisposition. Both are pretty common viruses; it's just that the immune system keeps them in check for most people. In our case, two people with impaired immune systems had kids and passed along those deficiencies. Al the best, Robyn p.s. I would definitely have your son tested. ________________________________ From: Briffa SeventySeven <briffa77@...> Sent: Sun, March 14, 2010 1:37:42 PM Subject: Re: New to the Group Hello, Your son's symptoms sound just my son's - the eczema, verbal but not socially great. Consequently, I recently found out that I have a very high HHV6 and EBV antibody count (both of those viruses are in the herpes family.) I'm am wondering if I passed this onto my son, either in utero or by genetic predisposition! I think I am going to have his antibodies tested. Bridget From: Oriana <ovaldes82 (DOT) com> Subject: New to the Group groups (DOT) com Date: Sunday, March 14, 2010, 1:09 PM Hi- I'm new to the group and would like to introduce myself. My son is 13 years old and moderately affected, he is verbal but not conversational. We have been on the biomedical wagon for about 5 years with little improvements. The reason I'm interested in this protocol is because my son hasn't been sick for years, as long as I remember he's had a rash on his back, legs and back of arms that looks like a mild eczema, he participated in Dr. McCandles LDN study and she suggested after looking at his results that he might have a brain virus usually in the herpes family. He was on valtrex years ago but did not see any improvements. I'm am feeling discouraged this days because I see my beautiful baby already a teenager and sooo.. behind in everything. I'm going to make an appointment with Dr. Goldberg because I have a good feeling about this protocol. I pray that it will help my son heal. I'm looking forward to learn from all of you. Oriana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Amen to that! ________________________________ From: csemmeyer <csemmeyer@...> Sent: Thu, March 25, 2010 11:06:00 AM Subject: New to the Group Greetings: I am new to this group so I thought I would say hello to all the current posters. I can't tell how many people are in this group so if anyone could share that would be great. My son, , now 10 yrs, was misdiagnosed with ASD about 5 years ago. Since we learned that he has an immune system dysregulation, and other associated issues, we are working diligently to help him recover from this illness. When I tell people this, they look at me like I am crazy, everyone is drinking the Autism koolaid and it's gut wrenching for me sometimes. I am very lucky to have this knowledge, and to have such a wonderful supportive family. I wish this didn't happen, but since it has, I am even more grateful for all the people in my son's life who love him so very much. We are so blessed! Keep up the good fight all, parent with courage, you are not alone! Corinne Meyer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2010 Report Share Posted July 27, 2010 I think there is only Dr. Goldberg in LA and Dr. in TX. Dr. G is very opposed to chelation and believes it is very dangerous. Be prepared to throw everything you thought you knew from the DAN doc out the window if you go to Dr. G. We did and our son has never been better! (he has been with Dr. G for 4 months). My son is on a different anti-viral so I cant tell you dosage. > > Hello, We are new to the group. Our 3.5 old has been getting DAN treatment for > just under a year. We have been on Valtrex prescribed through the same doctor > for about 3 weeks. We saw some significant changes in the first week which > included more speech, eye contact, more awareness & assertiveness. We have not > done any Viral tests or brain imaging but would like to consult a doctor who is > an expert in . I have a few questions for those who saw improvement on > Valtrex: > 1) Have folks done both Valtrex & Chelation and seen improvement > 2) What dosage did you use for Valtrex (abt 36 lbs)? Is it always given with an > anti-fungal like Diflucan? > 3) Like Dr G are there doctors in the Northern CA area that have a lot of > clinical experience in this? > > > Thanks very much for the help. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2010 Report Share Posted July 27, 2010 Hi, Sloan, Can you elaborate on how your son is doing? What are all the improvements you have seen? Has anything caused him a problem? Thanks, Sheryl ________________________________ From: Sloan <Sloan_smith@...> Sent: Tue, July 27, 2010 2:41:25 PM Subject: Re: New to the group  I think there is only Dr. Goldberg in LA and Dr. in TX. Dr. G is very opposed to chelation and believes it is very dangerous. Be prepared to throw everything you thought you knew from the DAN doc out the window if you go to Dr. G. We did and our son has never been better! (he has been with Dr. G for 4 months). My son is on a different anti-viral so I cant tell you dosage. > > Hello, We are new to the group. Our 3.5 old has been getting DAN treatment for > just under a year. We have been on Valtrex prescribed through the same doctor > for about 3 weeks. We saw some significant changes in the first week which > included more speech, eye contact, more awareness & assertiveness. We have not > done any Viral tests or brain imaging but would like to consult a doctor who is > > an expert in . I have a few questions for those who saw improvement on > Valtrex: > 1) Have folks done both Valtrex & Chelation and seen improvement > 2) What dosage did you use for Valtrex (abt 36 lbs)? Is it always given with an > > anti-fungal like Diflucan? > 3) Like Dr G are there doctors in the Northern CA area that have a lot of > clinical experience in this? > > > Thanks very much for the help. > > > > > Quote Link to comment Share on other sites More sharing options...
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