Guest guest Posted July 1, 2007 Report Share Posted July 1, 2007 -Hello and Welcome to the group! My mother in law has Rum. Arth. Reg Arth usually can be found in hands and onset is very subtile but when you have your whole body effected at once quite dramatically, it's usually the worst kind of Arth and is Rum. You can be DX'd with a simple blood test to find out for sure. They have made huge advances in treatment of Rum Arth. and my Mother in law is finally doing very well with the latest medication she is on. I could find out what it is although it's premature as you need to see a Doctor. She played Guinne pig for years trying to find something that would work and lost her sight due to that. I am happy they have finally got something that keeps her comfortable. Hope the laymans terms are understandable as my understanding of it is limited. God Bless, -- In CFAlliance , jgnmemom wrote: > > I have chronic fatigue with hypothyroid. Can anyone tell me what the difference in symptoms is in reumatiod arthrits and regular arthritis. For the last few months the joints in my middle fingers have been swollen and I can't make a fist anymore. Also my knees are stiff and my hips ache. My mother had reumatiod arthritis and so this has got me a little concerned, any help would be appreciated, jgnmemom. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2007 Report Share Posted July 1, 2007 -Hello and Welcome to the group! My mother in law has Rum. Arth. Reg Arth usually can be found in hands and onset is very subtile but when you have your whole body effected at once quite dramatically, it's usually the worst kind of Arth and is Rum. You can be DX'd with a simple blood test to find out for sure. They have made huge advances in treatment of Rum Arth. and my Mother in law is finally doing very well with the latest medication she is on. I could find out what it is although it's premature as you need to see a Doctor. She played Guinne pig for years trying to find something that would work and lost her sight due to that. I am happy they have finally got something that keeps her comfortable. Hope the laymans terms are understandable as my understanding of it is limited. God Bless, -- In CFAlliance , jgnmemom wrote: > > I have chronic fatigue with hypothyroid. Can anyone tell me what the difference in symptoms is in reumatiod arthrits and regular arthritis. For the last few months the joints in my middle fingers have been swollen and I can't make a fist anymore. Also my knees are stiff and my hips ache. My mother had reumatiod arthritis and so this has got me a little concerned, any help would be appreciated, jgnmemom. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2007 Report Share Posted July 3, 2007 Hi Darlena, I'm happy for you that you got the job but do take care of yourself for sure. Moving is a huge job and lots of stress even if you want to move, and starting a new job is also way high a stressor. And you will be doing both. What will you be doing at your new job? I lost my job over 3 years ago and it was really hard to have to downsize and live on disability. It is still hard and I still hate not being able to work and socialize with folks at work etc. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2007 Report Share Posted July 4, 2007 Hi .I'm Baaack! Missed you & all with email blackout for awhile. Well I have met standard poodles who are totally skitty, golden labs who are dumb as posts or very smart, and so on. I think it is more the temperament of the dog and how you want it to help you than the breed IMHO. Then, I too am a big fan of mix breed/rescue dogs. Who knew I'd end up with a purebred Papillion LOL! He did need a home, and I just needed a dog that didn't need much exercise! We (Ruby my other dog) and I just adore him - that's the most important thing. Aylwin xox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 -Welcome back Alywin! I thought a " Cat " got your tongue! I did miss you, honestly! I know what you mean about Dogs and breeds. I used to breed labs of all colors. Both parents were very calm and yet smart. I have kept track of all puppies until I got this DD. At the last check, I found everyone to be very happy with their purchases from me and one word that was used the most was " smart " ! I always had the pups potty trained before leaving and the average time was at 4 weeks of age. I recently found out that If I want to adopt a rescued Standard Poodle, they won't let me keep my dear " Gizmo " and that is just out of the question! I asked why and they said because if you have any other dogs, you might not treat the new dog with all the attention they need. BAH! Bool-sheet! Anyway, I am still deflating here lol. I got stuck for a week battleing the 240lbs from 275 and just yesterday broke that and am streaming down pretty quickly! I have a neurologist appointment next week that Im sure will take me on yet another adventure. My 4th was very quiet as usual but hope yours was one big party! Fireworks and all! Huggz hun and I really missed yah, glad to see your back to take over the helm! -- In CFAlliance , " Aylwin " wrote: > > Hi .I'm Baaack! Missed you & all with email blackout for awhile. Well > I have met standard poodles who are totally skitty, golden labs who are dumb > as posts or very smart, and so on. I think it is more the temperament of the > dog and how you want it to help you than the breed IMHO. Then, I too am a > big fan of mix breed/rescue dogs. Who knew I'd end up with a purebred > Papillion LOL! He did need a home, and I just needed a dog that didn't need > much exercise! We (Ruby my other dog) and I just adore him - that's the most > important thing. Aylwin xox > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 Hi there Honey pie, well, being a Canuck, our big day is the 1st…but my son’s birthday is on the 4th! He always said he was born in the wrong country LOL! Glad you are getting care and treatment and deflating again. Whew hey? I am waaay to sick for any kinda party…<sigh> - it’s been a rough week, nasty extra pain as the cherry on top LOL! And I seem to have started falling down oh my, hope THAT stops! The cupboards were bare, so a friend who was supposed to come for lunch took me shopping instead. Good thing, I was so loopy, lost my cash card etc. (she found it) and she got ½ of it done while I did the other 1/2, forgetting things all the way LOL. Doing my psychomutter stagger round the grocery a guy overheard me, said sorry, was he in my way? And I said no…just shopping out loud…I don’t even get embarrassed anymore, it’s just Get the food, get the food, get home, get home…LOL. Oh well I have MRI’s finally next month and until then I can just sit on it and rotate…TC my Dear at least I have my internet back! Aylwin xox ps glad you bred the smart ones, they’re just lovely temperament etc. Good old Labs. What breed is Gizmo, I know you told me but I forget. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2007 Report Share Posted July 8, 2007 Awwww Alywin, I'm sorry you've been forced into the Party pooper position but try not to be too hard on yourself. I used to come over to canada on the 4th to watch the fireworks from a friends backyard. Those were the days! You started falling? *are you following me again?* At least I'm getting a little notice now before I fall, I stop when I feel the twinges in my calves that come between the standing and the " hello floor " . Gizmo is a shitizu, just a lil guy that is completely devoted to me and especially when I'm at my worst, he is my shadow. Amazingly, it's taken me an hour to get this post to you..I'm falling out so I'm being ordered to wrap it up and close my eyes. Huggz, don't worry bout the mumbling thing, I hear it's a sign of intelligence! LMAO! Those that don't know that, don't count. TC of yourself and since your following me lately....so will I. cynthia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2007 Report Share Posted July 8, 2007 Thanks Sweetie, this particular Plague of Job seems to be on the wane.my falling seems to be more of a tripping, slipping kinda thing.maybe just nothing real. We'll see! but there go my brains too LOL! Sending hugs, Aylwin xox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2007 Report Share Posted July 10, 2007 -Well Alywin, You want to watch that. I called that phase " drop foot " , now I just fall -- In CFAlliance , " Aylwin " wrote: > > Thanks Sweetie, this particular Plague of Job seems to be on the > wane.my falling seems to be more of a tripping, slipping kinda thing.maybe > just nothing real. We'll see! but there go my brains too LOL! Sending hugs, > Aylwin xox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2007 Report Share Posted July 10, 2007 Gee Thanks that's sooooo reassuring! LMAO! Honestly if I wear my Blunnies which cling to anything I seem to be all right - for now anyways.hotter'n blazes here now, ants keep crawling on me <sigh> . Don't fall down now! Aylwin xox -Well Alywin, You want to watch that. I called that phase " drop foot " , now I just fall Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Dropping a toe or foot is a neurological sing my neurologist said i should watch out for. Please talk to your doctor if this is happening to you. Love ya! Big Gentle Huggles from SE PA, Di ) wrote: > -Well Alywin, > > You want to watch that. I called that phase " drop foot " , now I just > fall > > -- In CFAlliance , " Aylwin " wrote: > >> Thanks Sweetie, this particular Plague of Job seems to be on the wane.my falling seems to be more of a tripping, slipping kinda thing.maybe just nothing real. We'll see! but there go my brains too LOL! Sending hugs, >> >> Aylwin xox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2007 Report Share Posted November 11, 2007 Welcome ! Wow, it sounds like you have dealt with a lot…I’ve also been through the hives/angio/anaphylactic fun…(I have ME) it does sound like the rabies vaccs may have upset the apple cart in your immune system….I know Rabies is a must-have but you know these kinds of problems are not uncommon (post-vaccination immune meltdown)…sounds like your love of critters has carried over though, how lovely to raise pups! You are among many animal lovers here…TC Aylwin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2007 Report Share Posted November 12, 2007 Welcome to the group . I am Sandrea, am 44, and haven't working in 3 years or so due to CFS and then Fibro. I also have a long history of depression and no thyroid due to thyroid cancer. I had repetitive stress injuries to both hands and elbows and my fibro seems to have settled mostly in those areas. In any case, I am a dog lover too, I have three dogs and three cats. I know that a lot can develop after stress of any kind, physical or emotional or spiritual. So, it is no wonder if following the rabies vaccinations you developed other health problems. I'm glad to hear that your husband is supportive as that makes the world of difference I think. I am single and live alone and do some respite work taking care of folks with mental retardation. I am hoping to take care of someone on a full time basis as that would be company for me and also a good source of income. Living on disability is no fun at all. Anyway, I'm glad you joined the group. Everyone is very caring and we try to be supportive of one another and answer all the questions we can. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2010 Report Share Posted April 10, 2010 I too had my third daughter at age 36 and often blamed myself for Cristina's condition since my other two daughters (age 21 and 18) are fine. Her weight is an issue for us. She just turned 4 and only weighs 35 pounds. Her first seizure did not happen until she was 16 months old. We have it under control now with trileptol. Cristina is age a nonwalker, nontalker, excessive drooler, visual problems but does not seem to mind the loud noises as I have been reading in the other posts. She started scooting at 2 but no signs of babbling, just grunting and laughing. Her neurologist is terrible and I have to drive over an hour just to see him. I have learned more about her condition on my own than what he can tell me. Good luck with everything. From: Chelsea Thornton <chelsea49509@ hotmail.com> Subject: RE: New to group To: polymicrogyria@ yahoogroups. com Date: Wednesday, April 7, 2010, 11:50 PM Hello Crystal, I'm so sorry that your fiancee is acting that way about your son's diagnosis. My daughter was diagnosed at 2 days old and is now 16 months, her father is still having trouble coping. I am here for support if you need it. If you would like, you can call me. Just let me know and I will give you my number. So sorry to here that you are feeling alone, but as Bridget said, we are all here for you. To: polymicrogyria@ yahoogroups. com From: lodge.bridget@ yahoo.com Date: Mon, 5 Apr 2010 16:08:30 -0700 Subject: Re: New to group  Crystal, welcome! I can sympathize with you, as my husband wants nothing to do with my daughter's diagnosis or doctor appointments, so the weight of it all falls one me. So, I am with you on that one!! I am so glad you did get a definitive diagnosis... but yes, there are always tons of questions!! Hang in there and just love him. The worries won't stop, but you will become stronger in dealing with all the issues. We are all here for you. Bridget ____________ _________ _________ __ From: Crystal Bates <cdb1009sbcglobal (DOT) net> To: polymicrogyria@ yahoogroups. com Sent: Wed, March 31, 2010 11:53:15 AM Subject: New to group  Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks to a new much better quality MRI. The first one was taken at 6 months old and at that time I was told he had SOD (Septo Optic Dysplasia), and that he was completely blind, which he isn't, but that was all. Now, I am told that in addition to the SOD, he has diffuse PMG pretty much covering most of his brain, Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of in boys), and because that's not enough, he also has a cyst located inside his brain that is getting huge and causing problems and must be removed. The MRI was performed on 2/16/10 but because this was " one of the most complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology conference to get everyone's opinion on it. So I didn't get the news until 3/2/10. I'm still waiting to meet with the Neurosurgeon and Neurologist (Stanford) and we don't have an appointment until 4/8/10. I haven't slept in months now. I have so many unanswered questions and worries. In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and while speech delayed he's catching up and never stops talking. He also has been diagnosed with ADHD and has some fairly significant impulse control issues. He has never had any " visible " seizures that I am aware of, but now I'm wondering about Nocturnal seizures and I'm thinking that he's having them and I just didn't know what to look for. I'm also very curious about the " Invisible " seizures I've been reading about. That really scares me and could explain some of his behaviors. Oh, and no drooling since he finally stopped teething. Any information any of you have to share would be most welcome. I'm feeling pretty alone in this right now. My fiance refuses to acknowledge the extent of the issues found and won't share in any of the research I've done. Thanks, Crystal and Caiden Redding, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2010 Report Share Posted April 10, 2010 Rita Where are you located? Maybe someone on here knows a good neuro in your area. I drive an hour each way for mine, but he is AMAZING. I've lived in 5 states, and he is the only one who doesn't talk down to ne, and has a personality. He even makes fun of other neurologists!! Sent from my iPhone I too had my third daughter at age 36 and often blamed myself for Cristina's condition since my other two daughters (age 21 and 18) are fine. Her weight is an issue for us. She just turned 4 and only weighs 35 pounds. Her first seizure did not happen until she was 16 months old. We have it under control now with trileptol. Cristina is age a nonwalker, nontalker, excessive drooler, visual problems but does not seem to mind the loud noises as I have been reading in the other posts. She started scooting at 2 but no signs of babbling, just grunting and laughing. Her neurologist is terrible and I have to drive over an hour just to see him. I have learned more about her condition on my own than what he can tell me. Good luck with everything. From: Chelsea Thornton <chelsea49509@ hotmail.com> Subject: RE: New to group To: polymicrogyria@ yahoogroups. com Date: Wednesday, April 7, 2010, 11:50 PM Hello Crystal, I'm so sorry that your fiancee is acting that way about your son's diagnosis. My daughter was diagnosed at 2 days old and is now 16 months, her father is still having trouble coping. I am here for support if you need it. If you would like, you can call me. Just let me know and I will give you my number. So sorry to here that you are feeling alone, but as Bridget said, we are all here for you. To: polymicrogyria@ yahoogroups. com From: lodge.bridget@ yahoo.com Date: Mon, 5 Apr 2010 16:08:30 -0700 Subject: Re: New to group Crystal, welcome! I can sympathize with you, as my husband wants nothing to do with my daughter's diagnosis or doctor appointments, so the weight of it all falls one me. So, I am with you on that one!! I am so glad you did get a definitive diagnosis... but yes, there are always tons of questions!! Hang in there and just love him. The worries won't stop, but you will become stronger in dealing with all the issues. We are all here for you. Bridget ____________ _________ _________ __ From: Crystal Bates <cdb1009sbcglobal (DOT) net> To: polymicrogyria@ yahoogroups. com Sent: Wed, March 31, 2010 11:53:15 AM Subject: New to group Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks to a new much better quality MRI. The first one was taken at 6 months old and at that time I was told he had SOD (Septo Optic Dysplasia), and that he was completely blind, which he isn't, but that was all. Now, I am told that in addition to the SOD, he has diffuse PMG pretty much covering most of his brain, Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of in boys), and because that's not enough, he also has a cyst located inside his brain that is getting huge and causing problems and must be removed. The MRI was performed on 2/16/10 but because this was " one of the most complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology conference to get everyone's opinion on it. So I didn't get the news until 3/2/10. I'm still waiting to meet with the Neurosurgeon and Neurologist (Stanford) and we don't have an appointment until 4/8/10. I haven't slept in months now. I have so many unanswered questions and worries. In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and while speech delayed he's catching up and never stops talking. He also has been diagnosed with ADHD and has some fairly significant impulse control issues. He has never had any " visible " seizures that I am aware of, but now I'm wondering about Nocturnal seizures and I'm thinking that he' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2010 Report Share Posted April 10, 2010 I live in SC and my neuro treata me like I'm an idiot. When I asked a few months ag o about an updated MRI (since it hss been over 2 years since she has had one), his exact words to me were, " what do you think has changed, if she would have lost her arm two years ago would you have expected it to grow back by now? I would drive three hours for her appts. The drive doesn't bother me but I want to be treated like a concerned mother, not belittled. From: Chelsea Thornton <chelsea49509@ hotmail.com> Subject: RE: New to group To: polymicrogyria@ yahoogroups. com Date: Wednesday, April 7, 2010, 11:50 PM Hello Crystal, I'm so sorry that your fiancee is acting that way about your son's diagnosis. My daughter was diagnosed at 2 days old and is now 16 months, her father is still having trouble coping. I am here for support if you need it. If you would like, you can call me. Just let me know and I will give you my number. So sorry to here that you are feeling alone, but as Bridget said, we are all here for you. To: polymicrogyria@ yahoogroups. com From: lodge.bridget@ yahoo.com Date: Mon, 5 Apr 2010 16:08:30 -0700 Subject: Re: New to group Crystal, welcome! I can sympathize with you, as my husband wants nothing to do with my daughter's diagnosis or doctor appointments, so the weight of it all falls one me. So, I am with you on that one!! I am so glad you did get a definitive diagnosis... but yes, there are always tons of questions!! Hang in there and just love him. The worries won't stop, but you will become stronger in dealing with all the issues. We are all here for you. Bridget ____________ _________ _________ __ From: Crystal Bates <cdb1009sbcglobal (DOT) net> To: polymicrogyria@ yahoogroups. com Sent: Wed, March 31, 2010 11:53:15 AM Subject: New to group Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks to a new much better quality MRI. The first one was taken at 6 months old and at that time I was told he had SOD (Septo Optic Dysplasia), and that he was completely blind, which he isn't, but that was all. Now, I am told that in addition to the SOD, he has diffuse PMG pretty much covering most of his brain, Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of in boys), and because that's not enough, he also has a cyst located inside his brain that is getting huge and causing problems and must be removed. The MRI was performed on 2/16/10 but because this was " one of the most complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology conference to get everyone's opinion on it. So I didn't get the news until 3/2/10. I'm still waiting to meet with the Neurosurgeon and Neurologist (Stanford) and we don't have an appointment until 4/8/10. I haven't slept in months now. I have so many unanswered questions and worries. In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and while speech delayed he's catching up and never stops talking. He also has been diagnosed with ADHD and has some fairly significant impulse control issues. He has never had any " visible " seizures that I am aware of, but now I'm wondering about Nocturnal seizures and I'm thinking that he' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2010 Report Share Posted April 11, 2010 Rita- I would def look for another neurologist! Is he pediatric? I have found that makes a huge difference. The first neuro in the NICU told us " don't get your hopes up she is never going to BE anything. "  However in defense of non-pediatric docs the neurosurgeon at same hospital said " she still needs love, food and nappy changes so don't put any limits on her. "  We are fortunate to have a children's hospital 2 hours away. I am familiar with it because my first daughter was born with a birth defect and I know alot of the nurses, docs and social workers there.  Rita, what I have said to others is the squeaky wheel gets the grease! I am a pain as a mother! I am a nurse as well so they can't sneak too many big terms by me without me breaking them down and saying explain that a little more or knowing what it is already. I am notorious for insisting on certain tests to be done or things to be changed. I am nice as long as they are nice to me! lol I have asked nurses to leave and not take care of my oldest daughter and I've also told them I am her mother and for them to do their job and not leave it for me. I'm also appreciative of the docs we have and tell them so. Good luck in finding someone who fits you and your daughter. It is almost like looking for the right mate. Jodi From: Chelsea Thornton <chelsea49509@ hotmail.com> Subject: RE: New to group To: polymicrogyria@ yahoogroups. com Date: Wednesday, April 7, 2010, 11:50 PM Hello Crystal, I'm so sorry that your fiancee is acting that way about your son's diagnosis. My daughter was diagnosed at 2 days old and is now 16 months, her father is still having trouble coping. I am here for support if you need it. If you would like, you can call me. Just let me know and I will give you my number. So sorry to here that you are feeling alone, but as Bridget said, we are all here for you. To: polymicrogyria@ yahoogroups. com From: lodge.bridget@ yahoo.com Date: Mon, 5 Apr 2010 16:08:30 -0700 Subject: Re: New to group Crystal, welcome! I can sympathize with you, as my husband wants nothing to do with my daughter's diagnosis or doctor appointments, so the weight of it all falls one me. So, I am with you on that one!! I am so glad you did get a definitive diagnosis... but yes, there are always tons of questions!! Hang in there and just love him. The worries won't stop, but you will become stronger in dealing with all the issues. We are all here for you. Bridget ____________ _________ _________ __ From: Crystal Bates <cdb1009sbcglobal (DOT) net> To: polymicrogyria@ yahoogroups. com Sent: Wed, March 31, 2010 11:53:15 AM Subject: New to group Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks to a new much better quality MRI. The first one was taken at 6 months old and at that time I was told he had SOD (Septo Optic Dysplasia), and that he was completely blind, which he isn't, but that was all. Now, I am told that in addition to the SOD, he has diffuse PMG pretty much covering most of his brain, Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of in boys), and because that's not enough, he also has a cyst located inside his brain that is getting huge and causing problems and must be removed. The MRI was performed on 2/16/10 but because this was " one of the most complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology conference to get everyone's opinion on it. So I didn't get the news until 3/2/10. I'm still waiting to meet with the Neurosurgeon and Neurologist (Stanford) and we don't have an appointment until 4/8/10. I haven't slept in months now. I have so many unanswered questions and worries. In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and while speech delayed he's catching up and never stops talking. He also has been diagnosed with ADHD and has some fairly significant impulse control issues. He has never had any " visible " seizures that I am aware of, but now I'm wondering about Nocturnal seizures and I'm thinking that he' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2010 Report Share Posted April 11, 2010 Rita Maybe his phrasing wasn't nice, but new MRIs are not done very often. We've done 2 in 13 years. HOWEVER, even if he's right that doesn't allow him to treat you like that. He should have explained WHY you don't need new films. Educating parents is half the job of these doctors. I don't know anyone in SC, sorry. Hopefully someone will!! Is there a children hospital near you? Or a Shriners? They affiliate with greats peds neuros usually, and will give you a referral. Sent from my iPhone Rita- I would def look for another neurologist! Is he pediatric? I have found that makes a huge difference. The first neuro in the NICU told us " don't get your hopes up she is never going to BE anything. " However in defense of non-pediatric docs the neurosurgeon at same hospital said " she still needs love, food and nappy changes so don't put any limits on her. " We are fortunate to have a children's hospital 2 hours away. I am familiar with it because my first daughter was born with a birth defect and I know alot of the nurses, docs and social workers there. Rita, what I have said to others is the squeaky wheel gets the grease! I am a pain as a mother! I am a nurse as well so they can't sneak too many big terms by me without me breaking them down and saying explain that a little more or knowing what it is already. I am notorious for insisting on certain tests to be done or things to be changed. I am nice as long as they are nice to me! lol I have asked nurses to leave and not take care of my oldest daughter and I've also told them I am her mother and for them to do their job and not leave it for me. I'm also appreciative of the docs we have and tell them so. Good luck in finding someone who fits you and your daughter. It is almost like looking for the right mate. Jodi From: Chelsea Thornton <chelsea49509@ hotmail.com> Subject: RE: New to group To: polymicrogyria@ yahoogroups. com Date: Wednesday, April 7, 2010, 11:50 PM Hello Crystal, I'm so sorry that your fiancee is acting that way about your son's diagnosis. My daughter was diagnosed at 2 days old and is now 16 months, her father is still having trouble coping. I am here for support if you need it. If you would like, you can call me. Just let me know and I will give you my number. So sorry to here that you are feeling alone, but as Bridget said, we are all here for you. To: polymicrogyria@ yahoogroups. com From: lodge.bridget@ yahoo.com Date: Mon, 5 Apr 2010 16:08:30 -0700 Subject: Re: New to group Crystal, welcome! I can sympathize with you, as my husband wants nothing to do with my daughter's diagnosis or doctor appointments, so the weight of it all falls one me. So, I am with you on that one!! I am so glad you did get a definitive diagnosis... but yes, there are always tons of questions!! Hang in there and just love him. The worries won't stop, but you will become stronger in dealing with all the issues. We are all here for you. Bridget ____________ _________ _________ __ From: Crystal Bates <cdb1009sbcglobal (DOT) net> To: polymicrogyria@ yahoogroups. com Sent: Wed, March 31, 2010 11:53:15 AM Subject: New to group Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks to a new much better quality MRI. The first one was taken at 6 months old and at that time I was told he had SOD (Septo Optic Dysplasia), and that he was completely blind, which he isn't, but that was all. Now, I am told that in addition to the SOD, he has diffuse PMG pretty much covering most of his brain, Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of in boys), and because that's not enough, he also has a cyst located inside his brain that is getting huge and causing problems and must be removed. The MRI was performed on 2/16/10 but because this was " one of the most complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology conference to get everyone's opinion on it. So I didn't get the news until 3/2/10. I'm still waiting to meet with the Neurosurgeon and Neurologist (Stanford) and we don't have an appointment until 4/8/10. I haven't slept in months now. I have so many unanswered questions and worries. In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and while speech delayed he's catching up and never stops talking. He also has been diagnosed with ADHD and has some fairly significant impulse control issues. He has never had any " visible " seizures that I am aware of, but now I'm wondering about Nocturnal seizures and I'm thinking that he' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2010 Report Share Posted April 12, 2010 No one should be treated this way. If this doctor is at a hospital, contact the parent advocate and tell them what was said to you. If you don’t speak up, he will continue to treat others this way. Find a new doctor who will give you the time and respect you deserve. Is this doctor at MUSC in ton, SC? My son was born there. Donna(mom to Trevor, 14 yrs old moderate BPNH-PMG and much more) From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of Rita Pangalangan Sent: Saturday, April 10, 2010 10:23 PM To: polymicrogyria Subject: Re: New to group I live in SC and my neuro treata me like I'm an idiot. When I asked a few months ag o about an updated MRI (since it hss been over 2 years since she has had one), his exact words to me were, " what do you think has changed, if she would have lost her arm two years ago would you have expected it to grow back by now? I would drive three hours for her appts. The drive doesn't bother me but I want to be treated like a concerned mother, not belittled. From: Chelsea Thornton <chelsea49509@ hotmail.com> Subject: RE: New to group To: polymicrogyria@ yahoogroups. com Date: Wednesday, April 7, 2010, 11:50 PM Hello Crystal, I'm so sorry that your fiancee is acting that way about your son's diagnosis. My daughter was diagnosed at 2 days old and is now 16 months, her father is still having trouble coping. I am here for support if you need it. If you would like, you can call me. Just let me know and I will give you my number. So sorry to here that you are feeling alone, but as Bridget said, we are all here for you. To: polymicrogyria@ yahoogroups. com From: lodge.bridget@ yahoo.com Date: Mon, 5 Apr 2010 16:08:30 -0700 Subject: Re: New to group Crystal, welcome! I can sympathize with you, as my husband wants nothing to do with my daughter's diagnosis or doctor appointments, so the weight of it all falls one me. So, I am with you on that one!! I am so glad you did get a definitive diagnosis... but yes, there are always tons of questions!! Hang in there and just love him. The worries won't stop, but you will become stronger in dealing with all the issues. We are all here for you. Bridget ____________ _________ _________ __ From: Crystal Bates <cdb1009sbcglobal (DOT) net> To: polymicrogyria@ yahoogroups. com Sent: Wed, March 31, 2010 11:53:15 AM Subject: New to group Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks to a new much better quality MRI. The first one was taken at 6 months old and at that time I was told he had SOD (Septo Optic Dysplasia), and that he was completely blind, which he isn't, but that was all. Now, I am told that in addition to the SOD, he has diffuse PMG pretty much covering most of his brain, Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of in boys), and because that's not enough, he also has a cyst located inside his brain that is getting huge and causing problems and must be removed. The MRI was performed on 2/16/10 but because this was " one of the most complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology conference to get everyone's opinion on it. So I didn't get the news until 3/2/10. I'm still waiting to meet with the Neurosurgeon and Neurologist (Stanford) and we don't have an appointment until 4/8/10. I haven't slept in months now. I have so many unanswered questions and worries. In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and while speech delayed he's catching up and never stops talking. He also has been diagnosed with ADHD and has some fairly significant impulse control issues. He has never had any " visible " seizures that I am aware of, but now I'm wondering about Nocturnal seizures and I'm thinking that he' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2010 Report Share Posted April 12, 2010 Has Cristina seen an endocrinologist before? My son stopped growing at 6 months. It took until he was almost 3 before someone took me serious about his growth issues. He was diagnosis with growth hormone deficiency along with cortisol and thyroid….something called panhypopititurism. Donna From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of Rita Pangalangan Sent: Saturday, April 10, 2010 7:10 PM To: polymicrogyria Subject: Re: New to group I too had my third daughter at age 36 and often blamed myself for Cristina's condition since my other two daughters (age 21 and 18) are fine. Her weight is an issue for us. She just turned 4 and only weighs 35 pounds. Her first seizure did not happen until she was 16 months old. We have it under control now with trileptol. Cristina is age a nonwalker, nontalker, excessive drooler, visual problems but does not seem to mind the loud noises as I have been reading in the other posts. She started scooting at 2 but no signs of babbling, just grunting and laughing. Her neurologist is terrible and I have to drive over an hour just to see him. I have learned more about her condition on my own than what he can tell me. Good luck with everything. From: Chelsea Thornton <chelsea49509@ hotmail.com> Subject: RE: New to group To: polymicrogyria@ yahoogroups. com Date: Wednesday, April 7, 2010, 11:50 PM Hello Crystal, I'm so sorry that your fiancee is acting that way about your son's diagnosis. My daughter was diagnosed at 2 days old and is now 16 months, her father is still having trouble coping. I am here for support if you need it. If you would like, you can call me. Just let me know and I will give you my number. So sorry to here that you are feeling alone, but as Bridget said, we are all here for you. To: polymicrogyria@ yahoogroups. com From: lodge.bridget@ yahoo.com Date: Mon, 5 Apr 2010 16:08:30 -0700 Subject: Re: New to group Crystal, welcome! I can sympathize with you, as my husband wants nothing to do with my daughter's diagnosis or doctor appointments, so the weight of it all falls one me. So, I am with you on that one!! I am so glad you did get a definitive diagnosis... but yes, there are always tons of questions!! Hang in there and just love him. The worries won't stop, but you will become stronger in dealing with all the issues. We are all here for you. Bridget ____________ _________ _________ __ From: Crystal Bates <cdb1009sbcglobal (DOT) net> To: polymicrogyria@ yahoogroups. com Sent: Wed, March 31, 2010 11:53:15 AM Subject: New to group Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks to a new much better quality MRI. The first one was taken at 6 months old and at that time I was told he had SOD (Septo Optic Dysplasia), and that he was completely blind, which he isn't, but that was all. Now, I am told that in addition to the SOD, he has diffuse PMG pretty much covering most of his brain, Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of in boys), and because that's not enough, he also has a cyst located inside his brain that is getting huge and causing problems and must be removed. The MRI was performed on 2/16/10 but because this was " one of the most complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology conference to get everyone's opinion on it. So I didn't get the news until 3/2/10. I'm still waiting to meet with the Neurosurgeon and Neurologist (Stanford) and we don't have an appointment until 4/8/10. I haven't slept in months now. I have so many unanswered questions and worries. In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and while speech delayed he's catching up and never stops talking. He also has been diagnosed with ADHD and has some fairly significant impulse control issues. He has never had any " visible " seizures that I am aware of, but now I'm wondering about Nocturnal seizures and I'm thinking that he's having them and I just didn't know what to look for. I'm also very curious about the " Invisible " seizures I've been reading about. That really scares me and could explain some of his behaviors. Oh, and no drooling since he finally stopped teething. Any information any of you have to share would be most welcome. I'm feeling pretty alone in this right now. My fiance refuses to acknowledge the extent of the issues found and won't share in any of the research I've done. Thanks, Crystal and Caiden Redding, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2010 Report Share Posted April 12, 2010 Donna, My daughter stopped growing at 2.  Between 2 and now she has gained about a pound and grown 3 cm.  Total.  She turned 3 in January.  She was about 2 1/2 when they took me seriously.  At 1 year she weighed 17 pounds, now at 3 years 4 months she weighs 25-26 (depends on the day!).  She actually FELL OFF the growth chart.  This is my typical daughter, by the way, not my daughter with PMG (who has been in the 95% her entire life).  We did endocronology and they found NOTHING - yet.  If she doesn't start growing soon I'm going to take her back. R. Holman PADI OWSI #193832 From: Chelsea Thornton <chelsea49509@ hotmail.com> Subject: RE: New to group To: polymicrogyria@ yahoogroups. com Date: Wednesday, April 7, 2010, 11:50 PM Hello Crystal, I'm so sorry that your fiancee is acting that way about your son's diagnosis. My daughter was diagnosed at 2 days old and is now 16 months, her father is still having trouble coping. I am here for support if you need it. If you would like, you can call me. Just let me know and I will give you my number. So sorry to here that you are feeling alone, but as Bridget said, we are all here for you. To: polymicrogyria@ yahoogroups. com From: lodge.bridget@ yahoo.com Date: Mon, 5 Apr 2010 16:08:30 -0700 Subject: Re: New to group Crystal, welcome! I can sympathize with you, as my husband wants nothing to do with my daughter's diagnosis or doctor appointments, so the weight of it all falls one me. So, I am with you on that one!! I am so glad you did get a definitive diagnosis... but yes, there are always tons of questions!! Hang in there and just love him. The worries won't stop, but you will become stronger in dealing with all the issues. We are all here for you. Bridget ____________ _________ _________ __ From: Crystal Bates <cdb1009sbcglobal (DOT) net> To: polymicrogyria@ yahoogroups. com Sent: Wed, March 31, 2010 11:53:15 AM Subject: New to group Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks to a new much better quality MRI. The first one was taken at 6 months old and at that time I was told he had SOD (Septo Optic Dysplasia), and that he was completely blind, which he isn't, but that was all. Now, I am told that in addition to the SOD, he has diffuse PMG pretty much covering most of his brain, Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of in boys), and because that's not enough, he also has a cyst located inside his brain that is getting huge and causing problems and must be removed. The MRI was performed on 2/16/10 but because this was " one of the most complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology conference to get everyone's opinion on it. So I didn't get the news until 3/2/10. I'm still waiting to meet with the Neurosurgeon and Neurologist (Stanford) and we don't have an appointment until 4/8/10. I haven't slept in months now. I have so many unanswered questions and worries. In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and while speech delayed he's catching up and never stops talking. He also has been diagnosed with ADHD and has some fairly significant impulse control issues. He has never had any " visible " seizures that I am aware of, but now I'm wondering about Nocturnal seizures and I'm thinking that he's having them and I just didn't know what to look for. I'm also very curious about the " Invisible " seizures I've been reading about. That really scares me and could explain some of his behaviors. Oh, and no drooling since he finally stopped teething. Any information any of you have to share would be most welcome. I'm feeling pretty alone in this right now. My fiance refuses to acknowledge the extent of the issues found and won't share in any of the research I've done. Thanks, Crystal and Caiden Redding, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2010 Report Share Posted April 12, 2010 Correction on my e-mail, Cristina is 4 and weighs a whopping 25 pounds, not 35. She has been to an endocrinologist. She sent me to a dietician. She recommendexd pediasure in between feedings. I now spend about $40.00 per week in pediasure. You would think since she doesn't walk or move a lot that she would gaon weight. She has only gained 5 pounds in 2 years. From: Chelsea Thornton <chelsea49509@ hotmail.com> Subject: RE: New to group To: polymicrogyria@ yahoogroups. com Date: Wednesday, April 7, 2010, 11:50 PM Hello Crystal, I'm so sorry that your fiancee is acting that way about your son's diagnosis. My daughter was diagnosed at 2 days old and is now 16 months, her father is still having trouble coping. I am here for support if you need it. If you would like, you can call me. Just let me know and I will give you my number. So sorry to here that you are feeling alone, but as Bridget said, we are all here for you. To: polymicrogyria@ yahoogroups. com From: lodge.bridget@ yahoo.com Date: Mon, 5 Apr 2010 16:08:30 -0700 Subject: Re: New to group Crystal, welcome! I can sympathize with you, as my husband wants nothing to do with my daughter's diagnosis or doctor appointments, so the weight of it all falls one me. So, I am with you on that one!! I am so glad you did get a definitive diagnosis... but yes, there are always tons of questions!! Hang in there and just love him. The worries won't stop, but you will become stronger in dealing with all the issues. We are all here for you. Bridget ____________ _________ _________ __ From: Crystal Bates <cdb1009sbcglobal (DOT) net> To: polymicrogyria@ yahoogroups. com Sent: Wed, March 31, 2010 11:53:15 AM Subject: New to group Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks to a new much better quality MRI. The first one was taken at 6 months old and at that time I was told he had SOD (Septo Optic Dysplasia), and that he was completely blind, which he isn't, but that was all. Now, I am told that in addition to the SOD, he has diffuse PMG pretty much covering most of his brain, Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of in boys), and because that's not enough, he also has a cyst located inside his brain that is getting huge and causing problems and must be removed. The MRI was performed on 2/16/10 but because this was " one of the most complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology conference to get everyone's opinion on it. So I didn't get the news until 3/2/10. I'm still waiting to meet with the Neurosurgeon and Neurologist (Stanford) and we don't have an appointment until 4/8/10. I haven't slept in months now. I have so many unanswered questions and worries. In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and while speech delayed he's catching up and never stops talking. He also has been diagnosed with ADHD and has some fairly significant impulse control issues. He has never had any " visible " seizures that I am aware of, but now I'm wondering about Nocturnal seizures and I'm thinking that he's having them and I just didn't know what to look for. I'm also very curious about the " Invisible " seizures I've been reading about. That really scares me and could explain some of his behaviors. Oh, and no drooling since he finally stopped teething. Any information any of you have to share would be most welcome. I'm feeling pretty alone in this right now. My fiance refuses to acknowledge the extent of the issues found and won't share in any of the research I've done. Thanks, Crystal and Caiden Redding, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2010 Report Share Posted April 12, 2010 Yes, he is at MUSC From: Chelsea Thornton <chelsea49509@ hotmail.com> Subject: RE: New to group To: polymicrogyria@ yahoogroups. com Date: Wednesday, April 7, 2010, 11:50 PM Hello Crystal, I'm so sorry that your fiancee is acting that way about your son's diagnosis. My daughter was diagnosed at 2 days old and is now 16 months, her father is still having trouble coping. I am here for support if you need it. If you would like, you can call me. Just let me know and I will give you my number. So sorry to here that you are feeling alone, but as Bridget said, we are all here for you. To: polymicrogyria@ yahoogroups. com From: lodge.bridget@ yahoo.com Date: Mon, 5 Apr 2010 16:08:30 -0700 Subject: Re: New to group Crystal, welcome! I can sympathize with you, as my husband wants nothing to do with my daughter's diagnosis or doctor appointments, so the weight of it all falls one me. So, I am with you on that one!! I am so glad you did get a definitive diagnosis... but yes, there are always tons of questions!! Hang in there and just love him. The worries won't stop, but you will become stronger in dealing with all the issues. We are all here for you. Bridget ____________ _________ _________ __ From: Crystal Bates <cdb1009sbcglobal (DOT) net> To: polymicrogyria@ yahoogroups. com Sent: Wed, March 31, 2010 11:53:15 AM Subject: New to group Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks to a new much better quality MRI. The first one was taken at 6 months old and at that time I was told he had SOD (Septo Optic Dysplasia), and that he was completely blind, which he isn't, but that was all. Now, I am told that in addition to the SOD, he has diffuse PMG pretty much covering most of his brain, Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of in boys), and because that's not enough, he also has a cyst located inside his brain that is getting huge and causing problems and must be removed. The MRI was performed on 2/16/10 but because this was " one of the most complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology conference to get everyone's opinion on it. So I didn't get the news until 3/2/10. I'm still waiting to meet with the Neurosurgeon and Neurologist (Stanford) and we don't have an appointment until 4/8/10. I haven't slept in months now. I have so many unanswered questions and worries. In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and while speech delayed he's catching up and never stops talking. He also has been diagnosed with ADHD and has some fairly significant impulse control issues. He has never had any " visible " seizures that I am aware of, but now I'm wondering about Nocturnal seizures and I'm thinking that he' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2010 Report Share Posted April 12, 2010 Hey Rita,  My daughter Nava just turned 3 at the end of February and currently weighs 23 pounds. We have been to a bunch of different nutritionist, had some metabolic testing done (normal thus far) and keep being told to just feed her a high calorie/fat diet. We spend a lot of money on pediasure as well! I started getting the adult ensure available at walmart (equate brand nutritional shake plus) for $6.97/6 pack. It is a bit cheaper and compared to the pediasure brand. Here is the nutrition label if you are wondering:   Equate Shake Plus                    Boost Kid Essentials                   Pediasure Calories - 350                            240                                      Â\  Â Â Â Â Â Â Â Â Â 240 Fat - 11g                                     9                                      Â\  Â Â Â Â Â Â Â Â Â Â Â Â Â Â 9 Cholesterol - 10mg                    5                                       Â\  Â Â Â Â Â Â Â Â Â Â Â Â 10 Sodium - 240mg                         180           \                                       90 Potassium - 420 mg                  270                                      Â\  Â Â Â Â Â Â Â Â Â 310 Carb - 50 g                                 33                                       \             31 Protein - 13g                               7       \                                         \        7  Nava's GI doc recommended the boost kids to us which his comparable to the pediasure as you can see. She will drink pretty much anything. I'm not sure if anyone has recommended to make 'shakes' for your little one. I tried doing it for awhile with Nava, she loved them, however I found that she was in a stage where she would hold off on eating her food so she could have her shake. Which became a problem, so I started limiting her to only after dinner/before bedtime. I put pretty much anything and everything in them...yogurt, fruit, peanut butter, chocolate syrup, ice cream, ensure, etc. This seems to have boosted her weight gain from about nothing to 1 lb and a half in the last 9 months. I am hoping she will keep on track as her GI doc found out her diagnosis and automatically wanted to give her a g-tube! Crazy! Nava is fully capable of feeding herself, chewing, swallowing, drinking etc (without aspiration) and so this just seemed like we would go backwards if we gave her a g-tube. Anyway, I hope some of this helps if you haven't heard it all before. =) My daughter has been off the growth chart since about 4 months, but is on her own curve so we have been monitoring her weight for quite awhile! It's hard to figure out a way for her to gain some weight and factor in the crawling to walking phases too! Good luck! =) From: Chelsea Thornton <chelsea49509@ hotmail.com> Subject: RE: New to group To: polymicrogyria@ yahoogroups. com Date: Wednesday, April 7, 2010, 11:50 PM Hello Crystal, I'm so sorry that your fiancee is acting that way about your son's diagnosis. My daughter was diagnosed at 2 days old and is now 16 months, her father is still having trouble coping. I am here for support if you need it. If you would like, you can call me. Just let me know and I will give you my number. So sorry to here that you are feeling alone, but as Bridget said, we are all here for you. To: polymicrogyria@ yahoogroups. com From: lodge.bridget@ yahoo.com Date: Mon, 5 Apr 2010 16:08:30 -0700 Subject: Re: New to group Crystal, welcome! I can sympathize with you, as my husband wants nothing to do with my daughter's diagnosis or doctor appointments, so the weight of it all falls one me. So, I am with you on that one!! I am so glad you did get a definitive diagnosis... but yes, there are always tons of questions!! Hang in there and just love him. The worries won't stop, but you will become stronger in dealing with all the issues. We are all here for you. Bridget ____________ _________ _________ __ From: Crystal Bates <cdb1009sbcglobal (DOT) net> To: polymicrogyria@ yahoogroups. com Sent: Wed, March 31, 2010 11:53:15 AM Subject: New to group Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks to a new much better quality MRI. The first one was taken at 6 months old and at that time I was told he had SOD (Septo Optic Dysplasia), and that he was completely blind, which he isn't, but that was all. Now, I am told that in addition to the SOD, he has diffuse PMG pretty much covering most of his brain, Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of in boys), and because that's not enough, he also has a cyst located inside his brain that is getting huge and causing problems and must be removed. The MRI was performed on 2/16/10 but because this was " one of the most complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology conference to get everyone's opinion on it. So I didn't get the news until 3/2/10. I'm still waiting to meet with the Neurosurgeon and Neurologist (Stanford) and we don't have an appointment until 4/8/10. I haven't slept in months now. I have so many unanswered questions and worries. In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and while speech delayed he's catching up and never stops talking. He also has been diagnosed with ADHD and has some fairly significant impulse control issues. He has never had any " visible " seizures that I am aware of, but now I'm wondering about Nocturnal seizures and I'm thinking that he's having them and I just didn't know what to look for. I'm also very curious about the " Invisible " seizures I've been reading about. That really scares me and could explain some of his behaviors. Oh, and no drooling since he finally stopped teething. Any information any of you have to share would be most welcome. I'm feeling pretty alone in this right now. My fiance refuses to acknowledge the extent of the issues found and won't share in any of the research I've done. Thanks, Crystal and Caiden Redding, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2010 Report Share Posted April 12, 2010 Thanks...I'll try the shakes. It's great that your daughter can feed herself. I am working on trying to get mine to fingerfeed herself. I still have to mash her food up for her. She has had swallow tests. Her swallowing is not an issue, it's the chewing. In fact, she still takes the bottle because I want to make sure she gets enough to eat. I know she's too old for the bottle but I would rather do that than a g-tube which has also been recommended to me. From: Chelsea Thornton <chelsea49509@ hotmail.com> Subject: RE: New to group To: polymicrogyria@ yahoogroups. com Date: Wednesday, April 7, 2010, 11:50 PM Hello Crystal, I'm so sorry that your fiancee is acting that way about your son's diagnosis. My daughter was diagnosed at 2 days old and is now 16 months, her father is still having trouble coping. I am here for support if you need it. If you would like, you can call me. Just let me know and I will give you my number. So sorry to here that you are feeling alone, but as Bridget said, we are all here for you. To: polymicrogyria@ yahoogroups. com From: lodge.bridget@ yahoo.com Date: Mon, 5 Apr 2010 16:08:30 -0700 Subject: Re: New to group Crystal, welcome! I can sympathize with you, as my husband wants nothing to do with my daughter's diagnosis or doctor appointments, so the weight of it all falls one me. So, I am with you on that one!! I am so glad you did get a definitive diagnosis... but yes, there are always tons of questions!! Hang in there and just love him. The worries won't stop, but you will become stronger in dealing with all the issues. We are all here for you. Bridget ____________ _________ _________ __ From: Crystal Bates <cdb1009sbcglobal (DOT) net> To: polymicrogyria@ yahoogroups. com Sent: Wed, March 31, 2010 11:53:15 AM Subject: New to group Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks to a new much better quality MRI. The first one was taken at 6 months old and at that time I was told he had SOD (Septo Optic Dysplasia), and that he was completely blind, which he isn't, but that was all. Now, I am told that in addition to the SOD, he has diffuse PMG pretty much covering most of his brain, Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of in boys), and because that's not enough, he also has a cyst located inside his brain that is getting huge and causing problems and must be removed. The MRI was performed on 2/16/10 but because this was " one of the most complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology conference to get everyone's opinion on it. So I didn't get the news until 3/2/10. I'm still waiting to meet with the Neurosurgeon and Neurologist (Stanford) and we don't have an appointment until 4/8/10. I haven't slept in months now. I have so many unanswered questions and worries. In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and while speech delayed he's catching up and never stops talking. He also has been diagnosed with ADHD and has some fairly significant impulse control issues. He has never had any " visible " seizures that I am aware of, but now I'm wondering about Nocturnal seizures and I'm thinking that he's having them and I just didn't know what to look for. I'm also very curious about the " Invisible " seizures I've been reading about. That really scares me and could explain some of his behaviors. Oh, and no drooling since he finally stopped teething. Any information any of you have to share would be most welcome. I'm feeling pretty alone in this right now. My fiance refuses to acknowledge the extent of the issues found and won't share in any of the research I've done. Thanks, Crystal and Caiden Redding, CA Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.