Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Hi - It was wonderful to hear from you - I just sent a global thank you for the words of encouragement which certainly turned my day around (to say the least) but just wanted to send you a side note to let you know that we are going to Strong (and have an apt. w/Dr. Wong - 's neuro, right?). Bad news is, our apt. was scheduled for the end of Aug. and then called me this week saying the Dr. wouldn't be available and she needed to reschedule for the end of Sept. I was so bummed! We are so close to being seizure free (down to night time seizures now) and was interested to see how they may suggest fine tuning to get the night time seizures down. But... at least we have the apt. and all the paperwork is done and sent. I'll be sure to let you know how things go once we FINALLY get in. That's great news that is doing so well - I often think about that little guy - again, very encouraging to hear that he is making bigger strides in development and talking more. That's SOOOO cool that he is now med free, too, I'm sure a HUGE load off your minds! Always scary thinking of weaning and then pulling the medication, never knowing how he'd respond. WOW!!!! I don't think it is out of the question to discuss the possibility of weaning after you hit the one year mark. Especially since has been seizure free from the time of initiation (or close enough). Though you were probably hoping for an EEG this time, it might be more insightful to have it done in Nov. - if it's clear/normal at that time, I'm sure it will give the Drs. more info. to go by. I know what you mean though, it would have been encouraging to see a normal EEG NOW. Hug that little guy for me! I haven't seen you post much lately so am especially glad to hear 's continuing to do so well! (mom to ) --- Macko jasonsmom001@...> wrote: > - > I'm so sorry about your recent appt. with the local > neuro. What a jerk! I agree with 's > reply...you can't predict the future and if you > believe is going to be ok and you ARE seeing > strides in development, that is definitely a > positive! And the no talking thing... is > starting to say more words slowly but surely. I > think it takes awhile for these kids to get their > bearings once off all meds...there's so much more > for their little brains to take in! And they need > to comprehend things before they can be expected to > express themselves! We have a friend that is a > counselor who didn't speak till he was 3 and he is > about one of the smartest men I know! > I have been meaning to write since I saw you were > back from vacation. It seems that is doing > TONS better! That's great. We had an appt. today > with our neuro. at Strong...just a 6 month check, no > eeg till Nov. I was kind of hoping for one today > though, since he is now off all meds and doing even > better. By then though he will have been on the > diet a year and I'm wondering if we will start to > lower the ratio at all. > I thought you mentioned in a previous post that you > had an appt. this month with a new keto team? Was > just wondering if you were going to Rochester or if > it was a new team in NYC. > Anyway, glad to see that things are going well for > (despite that jerky neuro.) Big hugs to him! > - mom to 2 and 1/2, ketokid since 10/03, > seizure free since 11/03, med free since 7/04 > > " M. " mcpitza@...> wrote: > , > You have to keep " kicking against the pricks " . My > sons Neuro told me > the same thing several years back. This year he just > completed the > second grade and his teacher advised us that he is > the best reader in > her class (which btw is a regular grade school > non-special ed. class > in a private school that happens to have a great > teacher/student > ratio). You can't buy into what they are saying or > you will lower the > bar for your child. You will know what your child is > capable of > doing. Trust yourself and lean on the sustaining > infinite. > > > > > > " The Ketogenic Diet....a realistic treatment > option, NOT just a last resort! " > > List is for parent to parent > support only. > It is important to get medical > advice from a professional keto team! > Subscribe: > ketogenic-subscribe > Unsubscribe: > ketogenic-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Sorry to " jump in " . Do you mean Strong Hospital in Rochester, NY? My husband is from Rochester. Re: Strong Hosp./- Hi - It was wonderful to hear from you - I just sent a global thank you for the words of encouragement which certainly turned my day around (to say the least) but just wanted to send you a side note to let you know that we are going to Strong (and have an apt. w/Dr. Wong - 's neuro, right?). Bad news is, our apt. was scheduled for the end of Aug. and then called me this week saying the Dr. wouldn't be available and she needed to reschedule for the end of Sept. I was so bummed! We are so close to being seizure free (down to night time seizures now) and was interested to see how they may suggest fine tuning to get the night time seizures down. But... at least we have the apt. and all the paperwork is done and sent. I'll be sure to let you know how things go once we FINALLY get in. That's great news that is doing so well - I often think about that little guy - again, very encouraging to hear that he is making bigger strides in development and talking more. That's SOOOO cool that he is now med free, too, I'm sure a HUGE load off your minds! Always scary thinking of weaning and then pulling the medication, never knowing how he'd respond. WOW!!!! I don't think it is out of the question to discuss the possibility of weaning after you hit the one year mark. Especially since has been seizure free from the time of initiation (or close enough). Though you were probably hoping for an EEG this time, it might be more insightful to have it done in Nov. - if it's clear/normal at that time, I'm sure it will give the Drs. more info. to go by. I know what you mean though, it would have been encouraging to see a normal EEG NOW. Hug that little guy for me! I haven't seen you post much lately so am especially glad to hear 's continuing to do so well! (mom to ) --- Macko jasonsmom001@...> wrote: > - > I'm so sorry about your recent appt. with the local > neuro. What a jerk! I agree with 's > reply...you can't predict the future and if you > believe is going to be ok and you ARE seeing > strides in development, that is definitely a > positive! And the no talking thing... is > starting to say more words slowly but surely. I > think it takes awhile for these kids to get their > bearings once off all meds...there's so much more > for their little brains to take in! And they need > to comprehend things before they can be expected to > express themselves! We have a friend that is a > counselor who didn't speak till he was 3 and he is > about one of the smartest men I know! > I have been meaning to write since I saw you were > back from vacation. It seems that is doing > TONS better! That's great. We had an appt. today > with our neuro. at Strong...just a 6 month check, no > eeg till Nov. I was kind of hoping for one today > though, since he is now off all meds and doing even > better. By then though he will have been on the > diet a year and I'm wondering if we will start to > lower the ratio at all. > I thought you mentioned in a previous post that you > had an appt. this month with a new keto team? Was > just wondering if you were going to Rochester or if > it was a new team in NYC. > Anyway, glad to see that things are going well for > (despite that jerky neuro.) Big hugs to him! > - mom to 2 and 1/2, ketokid since 10/03, > seizure free since 11/03, med free since 7/04 > > " M. " mcpitza@...> wrote: > , > You have to keep " kicking against the pricks " . My > sons Neuro told me > the same thing several years back. This year he just > completed the > second grade and his teacher advised us that he is > the best reader in > her class (which btw is a regular grade school > non-special ed. class > in a private school that happens to have a great > teacher/student > ratio). You can't buy into what they are saying or > you will lower the > bar for your child. You will know what your child is > capable of > doing. Trust yourself and lean on the sustaining > infinite. > > > > > > " The Ketogenic Diet....a realistic treatment > option, NOT just a last resort! " > > List is for parent to parent > support only. > It is important to get medical > advice from a professional keto team! > Subscribe: > ketogenic-subscribe > Unsubscribe: > ketogenic-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 Hi - That's great you have an appt. with Dr. Wang! He is a very nice man...also very smart. Are you going to be meeting with Theresa also (dietician)? We love going there. It is about and hour and a half drive for us but so worth it! I can't say enough abot all the staff we have come into contact with at Strong...very professional, helpful, just really nice people! actually did have an eeg in Feb. which came back normal. Needless to say we were very surprised and thrilled! I thought we were going to have another one this time but was mistaken. I guess it does make more sense to wait till Nov. That way they can compare his eeg when we started the diet...very chaotic...to what it hopefully will continue to be, normal. I read your post about deciding to write your neuro. a letter. Good for you. I actually thought about doing that when we switched from our original neuro here but never did it. He had a very negative attitude also. I can't believe how some of these Dr.'s really think they know EVERYTHING and think nothing of telling you that. Gotta get going...have a PT appt. to get ready for. Hugs to ! michelle paulson michelle101291@...> wrote: Hi - It was wonderful to hear from you - I just sent a global thank you for the words of encouragement which certainly turned my day around (to say the least) but just wanted to send you a side note to let you know that we are going to Strong (and have an apt. w/Dr. Wong - 's neuro, right?). Bad news is, our apt. was scheduled for the end of Aug. and then called me this week saying the Dr. wouldn't be available and she needed to reschedule for the end of Sept. I was so bummed! We are so close to being seizure free (down to night time seizures now) and was interested to see how they may suggest fine tuning to get the night time seizures down. But... at least we have the apt. and all the paperwork is done and sent. I'll be sure to let you know how things go once we FINALLY get in. That's great news that is doing so well - I often think about that little guy - again, very encouraging to hear that he is making bigger strides in development and talking more. That's SOOOO cool that he is now med free, too, I'm sure a HUGE load off your minds! Always scary thinking of weaning and then pulling the medication, never knowing how he'd respond. WOW!!!! I don't think it is out of the question to discuss the possibility of weaning after you hit the one year mark. Especially since has been seizure free from the time of initiation (or close enough). Though you were probably hoping for an EEG this time, it might be more insightful to have it done in Nov. - if it's clear/normal at that time, I'm sure it will give the Drs. more info. to go by. I know what you mean though, it would have been encouraging to see a normal EEG NOW. Hug that little guy for me! I haven't seen you post much lately so am especially glad to hear 's continuing to do so well! (mom to ) --- Macko jasonsmom001@...> wrote: > - > I'm so sorry about your recent appt. with the local > neuro. What a jerk! I agree with 's > reply...you can't predict the future and if you > believe is going to be ok and you ARE seeing > strides in development, that is definitely a > positive! And the no talking thing... is > starting to say more words slowly but surely. I > think it takes awhile for these kids to get their > bearings once off all meds...there's so much more > for their little brains to take in! And they need > to comprehend things before they can be expected to > express themselves! We have a friend that is a > counselor who didn't speak till he was 3 and he is > about one of the smartest men I know! > I have been meaning to write since I saw you were > back from vacation. It seems that is doing > TONS better! That's great. We had an appt. today > with our neuro. at Strong...just a 6 month check, no > eeg till Nov. I was kind of hoping for one today > though, since he is now off all meds and doing even > better. By then though he will have been on the > diet a year and I'm wondering if we will start to > lower the ratio at all. > I thought you mentioned in a previous post that you > had an appt. this month with a new keto team? Was > just wondering if you were going to Rochester or if > it was a new team in NYC. > Anyway, glad to see that things are going well for > (despite that jerky neuro.) Big hugs to him! > - mom to 2 and 1/2, ketokid since 10/03, > seizure free since 11/03, med free since 7/04 > > " M. " mcpitza@...> wrote: > , > You have to keep " kicking against the pricks " . My > sons Neuro told me > the same thing several years back. This year he just > completed the > second grade and his teacher advised us that he is > the best reader in > her class (which btw is a regular grade school > non-special ed. class > in a private school that happens to have a great > teacher/student > ratio). You can't buy into what they are saying or > you will lower the > bar for your child. You will know what your child is > capable of > doing. Trust yourself and lean on the sustaining > infinite. > > > > > > " The Ketogenic Diet....a realistic treatment > option, NOT just a last resort! " > > List is for parent to parent > support only. > It is important to get medical > advice from a professional keto team! > Subscribe: > ketogenic-subscribe > Unsubscribe: > ketogenic-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
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