Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 : I'm so glad the surgeries were a success for you and your family! That's great. One other thing...everything you said here makes sense, including that the symptoms are likely to go away after surgery. Only one problem. had surgery a year ago. This is why we're going to all these dr's. To try to get answers. I don't know if we'll find them, but we'll keep trying. Thanks! Re: Update on > Hello , > You know everyone with CM is different. So I won't give you the > speel. > > My son had severe congestion along with diagnosed allergies previous > to decompression, and now it is mostly gone. He gets a sniffle once > in a while, but the outcome post-op is more than I was looking for in > that area. > > Glenn (my son) also is suspected of having both Migraine and Chiari. > I don't know how you would go about proving that since Migraine can't > be detected yet with diagnostic devices. I think it is mostly Chiari > related with Glenn because his headaches are never touched by migraine > meds. He is much better than previous to decompression. We are both > glad that we had the option of decompression, and went ahead with it. > He actually thought the surgery was a " neat " experience. Can you tell > he is a teenaged boy? > > My daughter was the first in this family affair to have been dx'ed > with Chiari. She wet the bed until she was decompressed. Poof like a > light bulb it went away......along with a slew of other symptoms. Her > headaches remain at bay. Her surgery was the best outcome out of the > three of us. A kid born failure to thrive (wouldn't eat!), was dx'ed > with severe gastro reflux, slow motility, malabsorption, constipation, > was on the 3rd and 5th percentiles (not that we expect that to change > tremendously), was delayed with gross / fine motor (new meaning to the > word clumsy), and speech, visual acuity problems, swollen optic nerve, > mood swings, headaches, dizziness, didn't seem motivated to play like > other kids (lethargic), sleeping problems, wetting problems, learning > delayed, and I think memory problems. I can honestly say she is a > different kid today than she was pre-op almost 2 years ago. No more > visual acuity/ swollen optic nerve, which amazed the opthalmologist. > He had never in all of his practicing year experienced someone loosing > a visual acuity problem, and having a swollen optic nerve " heal " or go > totally away. Her mood is much better probably due to: being able to > eat (gastro reflux GONE!), able to sleep, play, not be dizzy, not > wetting the bed, being able to " go " (without pain, and can 'absorb' > the nutrients in food), her gross / fine motor, and speech have all > improved.... No wonder her mood is better! > > Amazingly three kids that I know (my daughter, my son, and a friends > child) all grew right after their procedures... I don't think the > growth was so tremendous as to change the outcome of their final > height. I do think that having your brain (endocrine system: > particularly the pituitary where growth hormone is emitted) squished > adds some negative impact on growth. > > I have no remaining symptoms on a consistent basis. I've had three > headaches since the surgery, and been really dizzy once. I'll take > that! I was almost bed ridden previous to decompression. My body > felt like I could write a new discription for what the word pain is > about. > > Good luck, and hang in there..... > > Decompression, for us, was a God send! > > Hugs, > N--->CM 1 successfully decompressed 4/2/01, mom to 11 > years old Noonan Syndrome = heart, eye, growth, bleeding problems + > Budd-Chiari (gastro involvement) successfully decompressed 4/13/01, > and Glenn 13 CM 1 (minimal herniation) quasi-successful decompression > 8/22/01 (I wonder if he would be doing ok .....if he didn't hit his > head post op? Still looking for some answers..... Appt with Dr. > Bolognese May 23), wife to Bob - the computer geek.....in NJ. > > > > > Hi all: > > > > Just thought I'd write a (somewhat) quick update. Sunday I had to > go to Iowa because my friend's husband had a major aneurysm and died > at age 33. Very sad. So I left the kids with 's dad (who > promptly blew it!) and drove up. I couldn't change the appointment > with the neurologist, so I zipped back home on Tuesday to take him. > Here's what she said: > > > > shows signs of both migraines and Chiari (surprise surprise). > She is going to call my NSG and try to get in before his annual > checkup in April, because she can't treat for migraines till > after the NSG says it's okay. She also mentioned that since 's > dad and I are both tall that is too small for his age. He is in > the lowest 3 percentile for his age group in height, weight AND head > circumference. So, she made an appointment in April for him to see an > Endocrine specialist. > > > > Also, given his background of asthma and sinus problems, combined > with his small stature and the fact that he's been wetting the bed > lately, she is concerned about a possibility of Cystic Fibrosis! As > if I don't have enough to deal with! > > > > Okay, as for the sinus problems, she made an appointment for > to see an ENT. The fun just never stops! > > > > One good thing came of it, though. 's hyperreflexes are all > cleared up now. That's a plus! > > > > Well, now that I'm home and settled, my oldest son has a terrible > flu that has kept him in the bathroom most of the time since 3 a.m. > last night, so I'm going to sign off and head for bed. I'm wiped out! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 : I'm so glad the surgeries were a success for you and your family! That's great. One other thing...everything you said here makes sense, including that the symptoms are likely to go away after surgery. Only one problem. had surgery a year ago. This is why we're going to all these dr's. To try to get answers. I don't know if we'll find them, but we'll keep trying. Thanks! Re: Update on > Hello , > You know everyone with CM is different. So I won't give you the > speel. > > My son had severe congestion along with diagnosed allergies previous > to decompression, and now it is mostly gone. He gets a sniffle once > in a while, but the outcome post-op is more than I was looking for in > that area. > > Glenn (my son) also is suspected of having both Migraine and Chiari. > I don't know how you would go about proving that since Migraine can't > be detected yet with diagnostic devices. I think it is mostly Chiari > related with Glenn because his headaches are never touched by migraine > meds. He is much better than previous to decompression. We are both > glad that we had the option of decompression, and went ahead with it. > He actually thought the surgery was a " neat " experience. Can you tell > he is a teenaged boy? > > My daughter was the first in this family affair to have been dx'ed > with Chiari. She wet the bed until she was decompressed. Poof like a > light bulb it went away......along with a slew of other symptoms. Her > headaches remain at bay. Her surgery was the best outcome out of the > three of us. A kid born failure to thrive (wouldn't eat!), was dx'ed > with severe gastro reflux, slow motility, malabsorption, constipation, > was on the 3rd and 5th percentiles (not that we expect that to change > tremendously), was delayed with gross / fine motor (new meaning to the > word clumsy), and speech, visual acuity problems, swollen optic nerve, > mood swings, headaches, dizziness, didn't seem motivated to play like > other kids (lethargic), sleeping problems, wetting problems, learning > delayed, and I think memory problems. I can honestly say she is a > different kid today than she was pre-op almost 2 years ago. No more > visual acuity/ swollen optic nerve, which amazed the opthalmologist. > He had never in all of his practicing year experienced someone loosing > a visual acuity problem, and having a swollen optic nerve " heal " or go > totally away. Her mood is much better probably due to: being able to > eat (gastro reflux GONE!), able to sleep, play, not be dizzy, not > wetting the bed, being able to " go " (without pain, and can 'absorb' > the nutrients in food), her gross / fine motor, and speech have all > improved.... No wonder her mood is better! > > Amazingly three kids that I know (my daughter, my son, and a friends > child) all grew right after their procedures... I don't think the > growth was so tremendous as to change the outcome of their final > height. I do think that having your brain (endocrine system: > particularly the pituitary where growth hormone is emitted) squished > adds some negative impact on growth. > > I have no remaining symptoms on a consistent basis. I've had three > headaches since the surgery, and been really dizzy once. I'll take > that! I was almost bed ridden previous to decompression. My body > felt like I could write a new discription for what the word pain is > about. > > Good luck, and hang in there..... > > Decompression, for us, was a God send! > > Hugs, > N--->CM 1 successfully decompressed 4/2/01, mom to 11 > years old Noonan Syndrome = heart, eye, growth, bleeding problems + > Budd-Chiari (gastro involvement) successfully decompressed 4/13/01, > and Glenn 13 CM 1 (minimal herniation) quasi-successful decompression > 8/22/01 (I wonder if he would be doing ok .....if he didn't hit his > head post op? Still looking for some answers..... Appt with Dr. > Bolognese May 23), wife to Bob - the computer geek.....in NJ. > > > > > Hi all: > > > > Just thought I'd write a (somewhat) quick update. Sunday I had to > go to Iowa because my friend's husband had a major aneurysm and died > at age 33. Very sad. So I left the kids with 's dad (who > promptly blew it!) and drove up. I couldn't change the appointment > with the neurologist, so I zipped back home on Tuesday to take him. > Here's what she said: > > > > shows signs of both migraines and Chiari (surprise surprise). > She is going to call my NSG and try to get in before his annual > checkup in April, because she can't treat for migraines till > after the NSG says it's okay. She also mentioned that since 's > dad and I are both tall that is too small for his age. He is in > the lowest 3 percentile for his age group in height, weight AND head > circumference. So, she made an appointment in April for him to see an > Endocrine specialist. > > > > Also, given his background of asthma and sinus problems, combined > with his small stature and the fact that he's been wetting the bed > lately, she is concerned about a possibility of Cystic Fibrosis! As > if I don't have enough to deal with! > > > > Okay, as for the sinus problems, she made an appointment for > to see an ENT. The fun just never stops! > > > > One good thing came of it, though. 's hyperreflexes are all > cleared up now. That's a plus! > > > > Well, now that I'm home and settled, my oldest son has a terrible > flu that has kept him in the bathroom most of the time since 3 a.m. > last night, so I'm going to sign off and head for bed. I'm wiped out! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 : I'm so glad the surgeries were a success for you and your family! That's great. One other thing...everything you said here makes sense, including that the symptoms are likely to go away after surgery. Only one problem. had surgery a year ago. This is why we're going to all these dr's. To try to get answers. I don't know if we'll find them, but we'll keep trying. Thanks! Re: Update on > Hello , > You know everyone with CM is different. So I won't give you the > speel. > > My son had severe congestion along with diagnosed allergies previous > to decompression, and now it is mostly gone. He gets a sniffle once > in a while, but the outcome post-op is more than I was looking for in > that area. > > Glenn (my son) also is suspected of having both Migraine and Chiari. > I don't know how you would go about proving that since Migraine can't > be detected yet with diagnostic devices. I think it is mostly Chiari > related with Glenn because his headaches are never touched by migraine > meds. He is much better than previous to decompression. We are both > glad that we had the option of decompression, and went ahead with it. > He actually thought the surgery was a " neat " experience. Can you tell > he is a teenaged boy? > > My daughter was the first in this family affair to have been dx'ed > with Chiari. She wet the bed until she was decompressed. Poof like a > light bulb it went away......along with a slew of other symptoms. Her > headaches remain at bay. Her surgery was the best outcome out of the > three of us. A kid born failure to thrive (wouldn't eat!), was dx'ed > with severe gastro reflux, slow motility, malabsorption, constipation, > was on the 3rd and 5th percentiles (not that we expect that to change > tremendously), was delayed with gross / fine motor (new meaning to the > word clumsy), and speech, visual acuity problems, swollen optic nerve, > mood swings, headaches, dizziness, didn't seem motivated to play like > other kids (lethargic), sleeping problems, wetting problems, learning > delayed, and I think memory problems. I can honestly say she is a > different kid today than she was pre-op almost 2 years ago. No more > visual acuity/ swollen optic nerve, which amazed the opthalmologist. > He had never in all of his practicing year experienced someone loosing > a visual acuity problem, and having a swollen optic nerve " heal " or go > totally away. Her mood is much better probably due to: being able to > eat (gastro reflux GONE!), able to sleep, play, not be dizzy, not > wetting the bed, being able to " go " (without pain, and can 'absorb' > the nutrients in food), her gross / fine motor, and speech have all > improved.... No wonder her mood is better! > > Amazingly three kids that I know (my daughter, my son, and a friends > child) all grew right after their procedures... I don't think the > growth was so tremendous as to change the outcome of their final > height. I do think that having your brain (endocrine system: > particularly the pituitary where growth hormone is emitted) squished > adds some negative impact on growth. > > I have no remaining symptoms on a consistent basis. I've had three > headaches since the surgery, and been really dizzy once. I'll take > that! I was almost bed ridden previous to decompression. My body > felt like I could write a new discription for what the word pain is > about. > > Good luck, and hang in there..... > > Decompression, for us, was a God send! > > Hugs, > N--->CM 1 successfully decompressed 4/2/01, mom to 11 > years old Noonan Syndrome = heart, eye, growth, bleeding problems + > Budd-Chiari (gastro involvement) successfully decompressed 4/13/01, > and Glenn 13 CM 1 (minimal herniation) quasi-successful decompression > 8/22/01 (I wonder if he would be doing ok .....if he didn't hit his > head post op? Still looking for some answers..... Appt with Dr. > Bolognese May 23), wife to Bob - the computer geek.....in NJ. > > > > > Hi all: > > > > Just thought I'd write a (somewhat) quick update. Sunday I had to > go to Iowa because my friend's husband had a major aneurysm and died > at age 33. Very sad. So I left the kids with 's dad (who > promptly blew it!) and drove up. I couldn't change the appointment > with the neurologist, so I zipped back home on Tuesday to take him. > Here's what she said: > > > > shows signs of both migraines and Chiari (surprise surprise). > She is going to call my NSG and try to get in before his annual > checkup in April, because she can't treat for migraines till > after the NSG says it's okay. She also mentioned that since 's > dad and I are both tall that is too small for his age. He is in > the lowest 3 percentile for his age group in height, weight AND head > circumference. So, she made an appointment in April for him to see an > Endocrine specialist. > > > > Also, given his background of asthma and sinus problems, combined > with his small stature and the fact that he's been wetting the bed > lately, she is concerned about a possibility of Cystic Fibrosis! As > if I don't have enough to deal with! > > > > Okay, as for the sinus problems, she made an appointment for > to see an ENT. The fun just never stops! > > > > One good thing came of it, though. 's hyperreflexes are all > cleared up now. That's a plus! > > > > Well, now that I'm home and settled, my oldest son has a terrible > flu that has kept him in the bathroom most of the time since 3 a.m. > last night, so I'm going to sign off and head for bed. I'm wiped out! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 Lee wrote: Hello everyone! Just wanted to give an update on what is happening with . She is still in the hospital and just today is starting to appear a little better. She had the VCUG done on Friday and she does have kidney reflux so , We will continue to send positive thoughts your way for Miss . I'm glad they seem to be moving forward with her care and getting things underway. I hope they will get everything repaired soon so she can come home! Love, Weir Visit the Weir family online: http://ca.geocities.com/weirfamilyrogers Home: lisaweir@... Work: lisa.weir@... Phone: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 Lee wrote: Hello everyone! Just wanted to give an update on what is happening with . She is still in the hospital and just today is starting to appear a little better. She had the VCUG done on Friday and she does have kidney reflux so , We will continue to send positive thoughts your way for Miss . I'm glad they seem to be moving forward with her care and getting things underway. I hope they will get everything repaired soon so she can come home! Love, Weir Visit the Weir family online: http://ca.geocities.com/weirfamilyrogers Home: lisaweir@... Work: lisa.weir@... Phone: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 Oh, - I'm glad things are getting better for lil' -- but it's so much worse than I'd imagined. You've been dealt lots of new " stuff " -- kidney reflux, lung damage, going home with a pic line... eegads. And just when she'd started school! I hope she's well and back of to class soon. Keep in touch. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 glad shes gettinb bwetter > > , > > Thanks for the update and I am so glad she is improving!!!! As hard as it > is now, hopefully these discoveries will lead to appropriate treatment > once > she is well, that can prevent her being so ill like this again. > > Kim > > > > > > Hello everyone! Just wanted to give an update on what is happening with > > . She is still in the hospital and just today is starting to > appear a > > little better. She had the VCUG done on Friday and she does have kidney > reflux > > so we will be seeing the urologist on Monday. She was started on a daily > > antibiotic and went for another kidney ultrasound Friday night. A > > pulmonologist was called in to see her on Friday because she was not > getting > > better. He has started some strong antibiotics and inhaled treatments > and they > > seem to be working. She was diagnosed with having pseudomonas last year > and > > they ran a culture to see if it is acting up along with the pneumonia > and it > > is. The pulmonologist said that she has some lung damage from the TE > fistula > > not being detected for 2 yrs and that has compromised all of this as > well. She > > is going to have a pic line placed Monday so that we can give IV > antibiotics > > for a couple of weeks and we may get to come home the middle of the week > as > > long as she > > continues to improve and the pic line is doing well. > > > > Thanks for all of your prayers. We really appreciate them! > > > > > > Mom to 3 yrs. > > > > > > > > --------------------------------- > > Yahoo! Mail > > Bring photos to life! New PhotoMail makes sharing a breeze. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 With all this I am hoping things get better soon! Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 With all this I am hoping things get better soon! Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 With all this I am hoping things get better soon! Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
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