Guest guest Posted August 29, 2009 Report Share Posted August 29, 2009 Need some thoughts here from Parents of kids ... a few years back, I helped to create 3 newsletters for the Parental Group. It was called The Network. It was for parents - by parents. They used to be downloadable from the website. I'm not sure if they're still there. We also mailed them out. We created these newsletters based on the updates Mrs Goldberg used to provide for parents when Dr G would visit the east coast families eons ago. I really missed these newsletters. They were informative and contained information of interest to parents. A few of the 'old-timer' parents have been tossing around ideas on how to get a parents' group started again. What can be done to support the parents and families of kids? What do parents need to get the word about to the community ? Should the newsletter be resurrected ? My local ASA posts their newsletter on their website now to cut down on printing costs. This is a *great* idea as printing and mailing were major costs for the 3 newsletters I noted early in this posting. Please post your ideas - only email me if you don't want to be identified. I want Dr G and the 'old-timers' to get a feel for what the parents want and need. Thanks! Doris - land Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2009 Report Share Posted August 29, 2009 Doris, Thank you for offering to help with this. Personally we would like to know how many children have recovered from the protocol. Our son has not made the significant progress that we had expected after 15 months on the protocol. His progress has been painfully slow and we have not missed a pill and have been strict with the diet. It is hard to reconcile whether or not it is that is helping or all the outside therapy and the natural course of development that is helping. All that to say, success stories would be helpful for those who have not made the significant progress they had hoped for. Thanks, Martha On Sat, Aug 29, 2009 at 5:47 PM, Doris and Steve < sjsmith@...> wrote: > > > > > Need some thoughts here from Parents of kids ... > > a few years back, I helped to create 3 newsletters for the Parental > Group. > It was called The Network. It was for parents - by parents. > They used to be downloadable from the website. I'm not sure if > they're still there. > We also mailed them out. > > We created these newsletters based on the updates Mrs Goldberg used to > provide > for parents when Dr G would visit the east coast families eons ago. I > really missed these newsletters. > They were informative and contained information of interest to > parents. > > A few of the 'old-timer' parents have been tossing around ideas on how > to get > a parents' group started again. What can be done to support the > parents and families > of kids? What do parents need to get the word about to the > community ? > > Should the newsletter be resurrected ? > > My local ASA posts their newsletter on their website now to cut down on > printing costs. > This is a *great* idea as printing and mailing were major costs for the > 3 newsletters > I noted early in this posting. > > Please post your ideas - only email me if you don't want to be identified. > I want Dr G and the 'old-timers' to get a feel for what the parents want > and need. > > Thanks! > Doris > - land > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2009 Report Share Posted September 16, 2009 Hello Martha! First: Thank you for responding to my query. You're the first that I've heard from which had me a little worried. I know we -parents are a busy lot but I was wondering if anyone cared about whether we should try and push forward for a reorganized parent group. Can you clarify what you mean by 'success stories'. Do you want stories from parents or do you want the official study-paperwork? Stories from parents may not include bloodwork or SPECT scans. If you're interested in seeing a study or 'hard data' as I like to refer to it, please let Dr G know during your next telephone consult. Explain why this information would be beneficial to you. Could you use it to help your son's case at home (ie with doctors, school or local papers)? Second: How old is your child? 15 mths really isn't a long time to see significant long lasting and meaningful results on the protocol. Granted, some children do respond more quickly than others. Others can be 'hard cases' and be a little bit more slower in responding. Sometimes, the health of the brain is not easily recognized. I know we often went months (years?) with little or no progress. Sometimes, even regression. I often joked with other parents that we were taking 1 step forward and 3 steps back. My son is doing better these days, but we still have alot of ground to cover. Doris land > > > > > > > > > > > Need some thoughts here from Parents of kids ... > > > > a few years back, I helped to create 3 newsletters for the Parental > > Group. > > It was called The Network. It was for parents - by parents. > > They used to be downloadable from the website. I'm not sure if > > they're still there. > > We also mailed them out. > > > > We created these newsletters based on the updates Mrs Goldberg used to > > provide > > for parents when Dr G would visit the east coast families eons ago. I > > really missed these newsletters. > > They were informative and contained information of interest to > > parents. > > > > A few of the 'old-timer' parents have been tossing around ideas on how > > to get > > a parents' group started again. What can be done to support the > > parents and families > > of kids? What do parents need to get the word about to the > > community ? > > > > Should the newsletter be resurrected ? > > > > My local ASA posts their newsletter on their website now to cut down on > > printing costs. > > This is a *great* idea as printing and mailing were major costs for the > > 3 newsletters > > I noted early in this posting. > > > > Please post your ideas - only email me if you don't want to be identified. > > I want Dr G and the 'old-timers' to get a feel for what the parents want > > and need. > > > > Thanks! > > Doris > > - land > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2009 Report Share Posted September 17, 2009 Doris, My husband and I would love both the stories from parents and the official study paperwork. We have a phone consult in the next week so we will ask Dr. Goldberg about it. The reason is to help us have the confidence to stay on this path when literally everyone (doctors, teachers, friends, therapists) believes this is a shot in the dark. With so much money being poured into this treatment with such slow (if any) progress it makes us wonder whether or not we are on the right track. Also we are pouring our resources into all kinds of other therapy that it makes it hard to know just what is making a difference at times. Because we are on the other side of the country this is a huge leap of faith for us. Our son will be 5 in January. We have been on the protocol since June 2008. We had the spect scan done last May which revealed a moderate dysfunction in the temporal lobes and frontal lobes. His main issues are language (nonverbal but emerging hopefully), stim behaviors, and lack of social interaction with peers. We were dissatisfied with the explanation of the spect scan and especially how the results did not give clarity as to how to proceed. Right now we seem to be stuck on finding the right SSRI and the high IGE/esonophil levels. We have been strict with his diet and even have done an elimination diet per our allergist's recommendation. Dr. G wants a typical child's " sharpness " from the ssri. We just don't see this. (We have tried 5 SSRIs) Sorry to vent. Several on this list have been extremely helpful (Marcia, Bill etc). We hang on every word and hope that we will have a success story to share at some point, too. If I were to guess there are other parents out there just like us that need to hear encouragement to stay the course or even some of the realistic " downs " of this journey. Just my thoughts. Thanks, Martha On Wed, Sep 16, 2009 at 8:29 PM, doris <sjsmith@...> wrote: > > > Hello Martha! > First: Thank you for responding to my query. You're the first that I've > heard from which had me a little worried. I know we -parents are a busy > lot but I was wondering if anyone cared about whether we should try and push > forward for a reorganized parent group. > > Can you clarify what you mean by 'success stories'. Do you want stories > from parents or do you want the official study-paperwork? > Stories from parents may not include bloodwork or SPECT scans. If you're > interested in seeing a study or 'hard data' as I like to refer to it, please > let Dr G know during your next telephone consult. Explain why this > information would be beneficial to you. Could you use it to help your son's > case at home (ie with doctors, school or local papers)? > > Second: How old is your child? 15 mths really isn't a long time to see > significant long lasting and meaningful results on the protocol. > Granted, some children do respond more quickly than others. Others can be > 'hard cases' and be a little bit more slower in responding. > Sometimes, the health of the brain is not easily recognized. I know we > often went months (years?) with little or no progress. Sometimes, even > regression. I often joked with other parents that we were taking 1 step > forward and 3 steps back. > My son is doing better these days, but we still have alot of ground to > cover. > > Doris > land > > > > > > > > > > > > > > > > > > > Need some thoughts here from Parents of kids ... > > > > > > a few years back, I helped to create 3 newsletters for the > Parental > > > Group. > > > It was called The Network. It was for parents - by parents. > > > They used to be downloadable from the website. I'm not sure if > > > they're still there. > > > We also mailed them out. > > > > > > We created these newsletters based on the updates Mrs Goldberg used to > > > provide > > > for parents when Dr G would visit the east coast families eons ago. I > > > really missed these newsletters. > > > They were informative and contained information of interest to > > > parents. > > > > > > A few of the 'old-timer' parents have been tossing around ideas on how > > > to get > > > a parents' group started again. What can be done to support the > > > parents and families > > > of kids? What do parents need to get the word about to the > > > community ? > > > > > > Should the newsletter be resurrected ? > > > > > > My local ASA posts their newsletter on their website now to cut down on > > > printing costs. > > > This is a *great* idea as printing and mailing were major costs for the > > > 3 newsletters > > > I noted early in this posting. > > > > > > Please post your ideas - only email me if you don't want to be > identified. > > > I want Dr G and the 'old-timers' to get a feel for what the parents > want > > > and need. > > > > > > Thanks! > > > Doris > > > - land > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 > > > > > > > > > > > > > > > > > > > > > > > Need some thoughts here from Parents of kids ... > > > > > > > > a few years back, I helped to create 3 newsletters for the > > Parental > > > > Group. > > > > It was called The Network. It was for parents - by parents. > > > > They used to be downloadable from the website. I'm not sure if > > > > they're still there. > > > > We also mailed them out. > > > > > > > > We created these newsletters based on the updates Mrs Goldberg used to > > > > provide > > > > for parents when Dr G would visit the east coast families eons ago. I > > > > really missed these newsletters. > > > > They were informative and contained information of interest to > > > > parents. > > > > > > > > A few of the 'old-timer' parents have been tossing around ideas on how > > > > to get > > > > a parents' group started again. What can be done to support the > > > > parents and families > > > > of kids? What do parents need to get the word about to the > > > > community ? > > > > > > > > Should the newsletter be resurrected ? > > > > > > > > My local ASA posts their newsletter on their website now to cut down on > > > > printing costs. > > > > This is a *great* idea as printing and mailing were major costs for the > > > > 3 newsletters > > > > I noted early in this posting. > > > > > > > > Please post your ideas - only email me if you don't want to be > > identified. > > > > I want Dr G and the 'old-timers' to get a feel for what the parents > > want > > > > and need. > > > > > > > > Thanks! > > > > Doris > > > > - land > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2009 Report Share Posted October 5, 2009 Carole, My son will be 5 in January. And yes he is on SSRI. Currently he is on Paxil and we trying to decide whether or not to try Prozac again. Martha On Mon, Sep 28, 2009 at 6:20 PM, chocolatiluv <chocolatiluv@...>wrote: > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Need some thoughts here from Parents of kids ... > > > > > > > > > > a few years back, I helped to create 3 newsletters for the > > > Parental > > > > > Group. > > > > > It was called The Network. It was for parents - by parents. > > > > > They used to be downloadable from the website. I'm not sure if > > > > > they're still there. > > > > > We also mailed them out. > > > > > > > > > > We created these newsletters based on the updates Mrs Goldberg used > to > > > > > provide > > > > > for parents when Dr G would visit the east coast families eons ago. > I > > > > > really missed these newsletters. > > > > > They were informative and contained information of interest to > > > > > parents. > > > > > > > > > > A few of the 'old-timer' parents have been tossing around ideas on > how > > > > > to get > > > > > a parents' group started again. What can be done to support the > > > > > parents and families > > > > > of kids? What do parents need to get the word about to > the > > > > > community ? > > > > > > > > > > Should the newsletter be resurrected ? > > > > > > > > > > My local ASA posts their newsletter on their website now to cut > down on > > > > > printing costs. > > > > > This is a *great* idea as printing and mailing were major costs for > the > > > > > 3 newsletters > > > > > I noted early in this posting. > > > > > > > > > > Please post your ideas - only email me if you don't want to be > > > identified. > > > > > I want Dr G and the 'old-timers' to get a feel for what the parents > > > want > > > > > and need. > > > > > > > > > > Thanks! > > > > > Doris > > > > > - land > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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