Guest guest Posted February 17, 2000 Report Share Posted February 17, 2000 My son responded well to kutapressin, but he also did well on other antivirals--we were looking for an even better response Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2000 Report Share Posted February 17, 2000 Hi Becky I am currently waiting for the results from my son's testing to see if antiviral meds are what we need to do for him. You experince has frightened me as well. can you please explain exactly hwat happened with your child? My son is a very big kid and if it was a behavior (ie out of control behavior reaction) that will be a definte concern for us. Thanks for any info JAN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2000 Report Share Posted February 17, 2000 , YIKES! What do you mean by brainwipe? JAN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2000 Report Share Posted February 17, 2000 One more question. What improvements have has anyone seen in their child? My son has moderate autism with bipolar and tourettes. We are absolutely convinced that his autism was caused by a reaction to a virus or vaccine. We know his tourettes was caused by strep. Any time his tourettes flairs up we see a fairly serious regression with severe outbursts, OCD and other problems too. I am very curious to know of improvements. Thanks JAN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2000 Report Share Posted February 17, 2000 We just started our 4 year old daughter on Kutapressin last week. She has been on a few different anti-virals over the last year. She has made improvement, but not what I would call vast improvement. We have not had any bad reactions to the medications so far. And the Kutapressin injections are going fine - we give them to her after she goes to sleep. We have not seen any changes yet - but Dr. Goldberg said it will take anywhere from 2-6 weeks to see any difference, if there is one. What kind of reactions did you see in your son? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2000 Report Share Posted February 17, 2000 Becky, What happened when you tried the anti-virals. Goldberg said there would be no reaction UNLESS Nick actually had a viral problem but we saw almost total brainwipe from Famvir (thank goodness we stopped it quickly). He is also tlking Kutapressin with us. scared >From: Valleyhts@... > >I support the idea behind anti-viral meds for our kids, however my son's >reaction to two anti-virals was HORRIBLE!!!!!!!! Now Dr. Goldberg is >encouraging a trial run of Kutapressin so I need to hear from people who have >had 1) tried at least one oral anti-viral med with negative or no >improvement results and 2) tried kutapressin. What were the results of the >trial with Kutapressin? >I am very, very scared because his experience was unbearable to him and to my >whole family. Please, please, please advise. Becky > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2000 Report Share Posted February 17, 2000 , What do you mean by " a total brainwipe " ? My son is on acyclovir (Zovirax) and we have had some improvements. I think Dr. Goldberg plans to eventually move him to another anti-viral such as Famvir, so I want to understand the risks. Thanks. Connie scared > > >>From: Valleyhts@... >> >>I support the idea behind anti-viral meds for our kids, however my son's >>reaction to two anti-virals was HORRIBLE!!!!!!!! Now Dr. Goldberg is >>encouraging a trial run of Kutapressin so I need to hear from people who >have >>had 1) tried at least one oral anti-viral med with negative or no >>improvement results and 2) tried kutapressin. What were the results of the >>trial with Kutapressin? >>I am very, very scared because his experience was unbearable to him and to >my >>whole family. Please, please, please advise. Becky >> >>--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2000 Report Share Posted February 17, 2000 OK folks....I began this inquiry and had many people ask what WAS the reaction? Well, our son is normally a very happy child with good self esteem and self image. He is generally cooperative and laughs (appropriately) numerous times per day. Suddenly, on valtrex and zivorax (tried separately several months apart for at least a 5 -6 week duration each), he was depressed and very non-compliant. His tantrums alienated him from his peers at school. At home I thought he and I would both lose our minds. He would cry at a drop of a hat and complained of headache. His tantrums, folks, were wild and frightening. I remember one time calling the answering machine of Dr. Goldberg's office begging to discontinue. Dr. Goldberg stated that this was " die off " and to expect improvement " soon " but it went on....and on.... and on and on for, like I said, up to six weeks. I finally called the office and said that was enough. Without support, I stopped and within two days I saw my little boy become happier until his true happiness returned soon afterward. I swore that I would rather have a happy and content autistic kid than a miserable, unhappy, screaming, punching, kicking, destructive non-autistic kid any day........and now I am facing the kutapressin dilemma.... One time I remember hearing a lecture featuring Temple Grandin. She supports medication use in children with autism, but warned, " if you do not see a positive response in a timely manner, stop the medication! " I am really struggling with this kutapressin because believe me, I remember the sadness, depression, and you'd-think-we-were-killing-him style tantrums. (Let me reiterate: I still believe this treatment regimen can help some children; I am just not certain it can help mine.) Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2000 Report Share Posted February 18, 2000 What type of testing is done to determine if antivirals or needed or not?? Thanks scared From: Valleyhts@... I support the idea behind anti-viral meds for our kids, however my son's reaction to two anti-virals was HORRIBLE!!!!!!!! Now Dr. Goldberg is encouraging a trial run of Kutapressin so I need to hear from people who have had 1) tried at least one oral anti-viral med with negative or no improvement results and 2) tried kutapressin. What were the results of the trial with Kutapressin? I am very, very scared because his experience was unbearable to him and to my whole family. Please, please, please advise. Becky ---------------------------------------------------------------------------- Please click above to support our sponsor ---------------------------------------------------------------------------- Now, every time you shop online, you can help MAT promote research! We have partnered with Shop2Give and BigPlanet. Visit http://mat.org for more info! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2000 Report Share Posted February 18, 2000 My child has just begun Valtrex and is still in the viral die off period. Between the absolutely crazy periods we are seeing wonderful glimpses of the child we had not seen in years! Despite the die off her school work has improved! Right now as I type she is leaping around the family room, talking to herself, and barking BUT she had a great morning so we'll get through this. Too bad we are having a heavy snowstorm and we are all locked in the house though! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2000 Report Share Posted February 18, 2000 You sound disappointed and frustrated. How long have you been working with Dr. G and how old was your child when you started? I'm getting the impression that many kids fit into the different sub categories of and are relatively easy to treat but some do not and take more time. When we have some more drugs to use (after the successful drug trials!) this may not be as much of a problem! I'm aware of a lot of success stories. I hope that you too will have one in a few years! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2000 Report Share Posted February 18, 2000 You have to do the full work up initially. You can tell by the viral titers. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2000 Report Share Posted February 18, 2000 My daughter is in the viral die off and very emotional. I figure that it took years for her to get this way and it is going to take awhile for the damage to be undone. What scares me is the progressive nature of this; immune reactions turning into autoimmune. My child already has auto immunoglobins against her thyroid. I can put up with her being crazy for months if that means long term health. She so desperately wants to be like the other kids that we are sticking with this despite the down side. Oh my daughter's fasting blood sugar is 101 also. I watched a friends autistic son become a diabetic. No thanks. Maybe the new drugs will help you son. Let's all hope that we parents can raise the money needed and get these drug trials going! That just may be the thing that will help your son! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2000 Report Share Posted February 18, 2000 My daughters behavior started to deteriorate after the first 24 hours of the half dose. One would think that you would have seen a reaction sooner but these darn kids don't read the textbooks and do things their own way. What does Dr. G think is going on? Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2000 Report Share Posted February 18, 2000 Diane - I found the best way to put the meds in my daughter was to grind them up and layer the powder between layers of frozen, nondairy coolwhip on a spoon. The first week she refused to take it and there was a lot of screaming, biting, and gagging. Now she knows we won't stop with the meds, so she opens her mouth and eats it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2000 Report Share Posted February 18, 2000 My son has been on Valtrex for approx. 3 weeks and I am now starting to see a regression. I faxed the office and was told that it is not from the Valtrex. I'm confused because I thought if it was going to work we would see this negative effect. Does anyone have any thoughts on this? Diane Re: scared >From: Valleyhts@... > >OK folks....I began this inquiry and had many people ask what WAS the >reaction? Well, our son is normally a very happy child with good self esteem >and self image. He is generally cooperative and laughs (appropriately) >numerous times per day. Suddenly, on valtrex and zivorax (tried separately >several months apart for at least a 5 -6 week duration each), he was >depressed and very non-compliant. His tantrums alienated him from his peers >at school. At home I thought he and I would both lose our minds. He would cry >at a drop of a hat and complained of headache. His tantrums, folks, were wild >and frightening. I remember one time calling the answering machine of Dr. >Goldberg's office begging to discontinue. Dr. Goldberg stated that this was > " die off " and to expect improvement " soon " but it went on....and on.... and >on and on for, like I said, up to six weeks. I finally called the office and >said that was enough. Without support, I stopped and within two days I saw my >little boy become happier until his true happiness returned soon afterward. I >swore that I would rather have a happy and content autistic kid than a >miserable, unhappy, screaming, punching, kicking, destructive non-autistic >kid any day........and now I am facing the kutapressin dilemma.... >One time I remember hearing a lecture featuring Temple Grandin. She supports >medication use in children with autism, but warned, " if you do not see a >positive response in a timely manner, stop the medication! " I am really >struggling with this kutapressin because believe me, I remember the sadness, >depression, and you'd-think-we-were-killing-him style tantrums. (Let me >reiterate: I still believe this treatment regimen can help some children; I >am just not certain it can help mine.) Becky > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2000 Report Share Posted February 18, 2000 When is it typical to see a die off? Is it normal to see after 3 weeks of the Valtrex? I'm also just curious, How do you get the Valtrex in her? I put it in Tyler's milk but I have to cover it up with chocolate syrup. It is the only way he takes it. Maybe I'm seeing a change from the chocolate syrup. Diane Re: scared >From: JOSKAT95@... > >My child has just begun Valtrex and is still in the viral die off period. >Between the absolutely crazy periods we are seeing wonderful glimpses of the >child we had not seen in years! Despite the die off her school work has >improved! Right now as I type she is leaping around the family room, talking >to herself, and barking BUT she had a great morning so we'll get through >this. Too bad we are having a heavy snowstorm and we are all locked in the >house though! Kathy > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2000 Report Share Posted February 18, 2000 It is my understanding that die off occurs in the first 7-10 days; I have a friend whose autistic daughter goes ballistic with corn syrup, which is probably the main ingredient in your chocolate syrup. When my kids couldn't swallow pills, I would crush them, dilute them in water, and squirt it in the back of their mouth with a large syringe . (whatever works, right?) Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2000 Report Share Posted February 18, 2000 - What do you mean by " brainwipe " ? Spacey? Stimming? Unresponsive? We have just started Famvir and I'm apprehensive and want to be watching for anything of concern! --Kathleen-- >From: " mnms " <mnms@...> > >Becky, > > What happened when you tried the anti-virals. Goldberg >said there would be no reaction UNLESS Nick actually >had a viral problem but we saw almost total brainwipe from >Famvir (thank goodness we stopped it quickly). He is also >tlking Kutapressin with us. > > >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> Kathleen J. McClatchey (Whiteman) kjm@... Executive Communications office phone: (734) 763-8190 Office of the Chief Information Officer fax: (734) 764-3988 5085 Fleming Administration Building cell phone: (734) 358-5122 University of Michigan home phone: (734) 944-1828 Ann Arbor, MI 48109 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2000 Report Share Posted February 18, 2000 We've tried 3 anti-virals with no improvements. The side effects have been increased stimminess and sleep problems, but they haven't been unbearable. We were on each anti-viral for at least a month. We started Kutapressin several months ago. My son had flu-like symptoms off and on for the first month. He's also had mouth sores with the Kutapressin (he never had them before in his life). We are now on Kutapressin and Valtrex. The mouth sores are better, but we still have not seen anything positive. I think we are ready to throw in the towel with anti-virals. We also have not had any success with anti-fungals. Loretta On Thu, 17 Feb 2000 12:53:25 EST Valleyhts@... writes: > From: Valleyhts@... > > I support the idea behind anti-viral meds for our kids, however my > son's > reaction to two anti-virals was HORRIBLE!!!!!!!! Now Dr. Goldberg is > encouraging a trial run of Kutapressin so I need to hear from people > who have > had 1) tried at least one oral anti-viral med with negative or no > improvement results and 2) tried kutapressin. What were the results > of the > trial with Kutapressin? > I am very, very scared because his experience was unbearable to him > and to my > whole family. Please, please, please advise. Becky > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2000 Report Share Posted February 19, 2000 Diane, I have found that compounding Valtrex into a liquid by a pharmacist is very convenient; and I don't have any trouble giving it to my child. The pharmacist will use Stevia for a sweetner and a couple of drops for flavoring; such as, banana, grape, or apple. Stevia is not real sugar so it's okay for our children. I can actually drizzle the Valtrex on my son's gluten free waffles and he'll eat it. I put it sometimes in juice, but that is probably not the best way since juice has alot of sugar. I have a friend that uses the banana flavor; and her daughter will take it right from the dropper. If you have any more questions or want the name of my pharmacy, please call me at (949) 650-2464 or email me at DVMCarney@.... Vicki Best Way Trucking Service wrote: > > From: " Best Way Trucking Service " <bestway@...> > > When is it typical to see a die off? Is it normal to see after 3 weeks of > the Valtrex? I'm also just curious, How do you get the Valtrex in her? I > put it in Tyler's milk but I have to cover it up with chocolate syrup. It > is the only way he takes it. Maybe I'm seeing a change from the chocolate > syrup. > > Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2000 Report Share Posted February 19, 2000 just swallows the pills. She started taking pills long before she was two because of her asthma. When she was little I put her pills in applesauce or almost anything that would work! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2000 Report Share Posted February 19, 2000 What does his lab work look like and how old is he? We are hoping to set up a clinic and I am trying to get prepared! I suspect that some children will be much harder to treat than others. I also suspect that the length of treatment will vary greatly. I have some suspicions on why at this point. What is your opinion? What should I be saying to parents to prepare them for what might, initially be a long frustrating road? Would it help you if you could talk to parents who have had an equally difficult time? What would help you right now? Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2000 Report Share Posted February 19, 2000 I suspect that the die off period is variable and I am saying that because while the majority may experience it within 7-10 days (and that makes absolute sense) there are always going to be those that have a different reaction. That is the benefit of going to a practitioner who has been in the business for many years, they will have seen another idiosyncratic reaction! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2000 Report Share Posted February 19, 2000 You have made some great suggestions! I reduce the amount of sugar I use in many things by using stevia. That is better for my daughter but also my husband's waistline! If anyone is going to try it believe the label! A little really does go a long way! Kathy Quote Link to comment Share on other sites More sharing options...
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