Guest guest Posted January 28, 2002 Report Share Posted January 28, 2002 Ok - we finally saw the neuro-surgeon!!!Kayleigh is 19 months old tomorrow. Everything I researched and knew about her plagio - I was right on - my Ped is so clueless. Basically - my neoro does a rating system. Kayleigh scored 11/15 - which means her plagio is moderate to severe. Her ears is mis- alligned by over 2cm but her facial assymetry is very minor - head head protrudes in the back left instead of in the facial area - so no asymmetry. This means no surgery. The problems such as migranes, tmj, etc are caused by the assymetry and Kayleigh's is so minr we shouldn't ever have a problem. Now as for banding, her fontenelle is still open, so the neuro said we could sill helmet, however he says there are no stats showing if banding really works over 12 months and so he can;t guarantee it would help. He says that he has seen a mild improvement since the e-mails I mailed him a month ago when trying to get in to see him, and that mother nature will continue to round it out although we will never see a nice normal rounding. If we had seen him before 12 months, he would have had us banded by 9 months to get the nice rounding. He says she is a candidate for helmet though but that the latest he has ever banded was 14 months. He says if the band makes a difference he couldn't tell us if it would be due to mother nature or the band at this point cause of her age. So now we are deciding whether to band or not - he says an 18 month old can shift the band as they have the smarts and the strenght to get the band shifted which alters what it is trying to do - so we are still deciding that one,. My neuro said that he was suprised my ped even knew the word plagio as many dont - cause I told him what my ped said - that banding was useless, etc, etc - currently the neuro and his assistant are trying to get the word out there about prevention - she is doing some major educating for him about this, she sent me back with a whole swack of pmaphlets to give my health unit for her. The neuro said I should be thier spokes person jokinly cause I knew as much as them practically! I have to go for now - but I will write more later. All in all - no surgery - but to band or not to band at 18 months, that is the question. - in Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 , I am glad to hear that your appiontment went well. Dr. Aronyk is an amazing man! Who was his assistant? or Lynn? We went to see for Livia's adjustments etc. I do agree that you have a hard decision to make! By 12 months, Livia was allready taking her helmet off, so at 19 months, it would be hard to keep on. I am very happy to hear that Kayleigh does not need surgery. That must be a huge sigh or relief! With her fontenelle still open, you might get a slight improvement in her head shape, if you can keep the band on her head. Also, she is not laying on her back all the time, so with her running around and causing havoc, she is improving her head shape! It is possible that it might improve a bit on its own. If I were you,( and I am not saying you SHOULD do it, it is your decision) I would try the band. That way you would not spend years wondering what might have happened if you had tried it. That is my opinion on to band or not to band......I figure, what the heck, why not try it, just in case it does give you some improvement! Anne mom of Livia DOC Grad/12/01 Canada OUr Appointment today Ok - we finally saw the neuro-surgeon!!!Kayleigh is 19 months old tomorrow. Everything I researched and knew about her plagio - I was right on - my Ped is so clueless.Basically - my neoro does a rating system. Kayleigh scored 11/15 - which means her plagio is moderate to severe. Her ears is mis-alligned by over 2cm but her facial assymetry is very minor - head head protrudes in the back left instead of in the facial area - so no asymmetry. This means no surgery.The problems such as migranes, tmj, etc are caused by the assymetry and Kayleigh's is so minr we shouldn't ever have a problem.Now as for banding, her fontenelle is still open, so the neuro said we could sill helmet, however he says there are no stats showing if banding really works over 12 months and so he can;t guarantee it would help.He says that he has seen a mild improvement since the e-mails I mailed him a month ago when trying to get in to see him, and that mother nature will continue to round it out although we will never see a nice normal rounding. If we had seen him before 12 months, he would have had us banded by 9 months to get the nice rounding.He says she is a candidate for helmet though but that the latest he has ever banded was 14 months. He says if the band makes a difference he couldn't tell us if it would be due to mother nature or the band at this point cause of her age.So now we are deciding whether to band or not - he says an 18 month old can shift the band as they have the smarts and the strenght to get the band shifted which alters what it is trying to do - so we are still deciding that one,. My neuro said that he was suprised my ped even knew the word plagio as many dont - cause I told him what my ped said - that banding was useless, etc, etc - currently the neuro and his assistant are trying to get the word out there about prevention - she is doing some major educating for him about this, she sent me back with a whole swack of pmaphlets to give my health unit for her. The neuro said I should be thier spokes person jokinly cause I knew as much as them practically!I have to go for now - but I will write more later.All in all - no surgery - but to band or not to band at 18 months, that is the question.- in CanadaFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 , My son Trevor who will turn 3 in three days went into his molding helmet at 14 months and stayed in it until a little over 18 months and we saw some improvement (about 40-50%). He did have assymetry in the front and that went away but he still has a mild flattening in the back and his left side bulges out a little and his ears are still a little off. My pediatrician was also very ignorant about plagio and I brought it up to her at Trevor's 3,6 and 9 month checkups before demanding to see a neurologist at 12 months and then having him helmeted. This was after I searched the internet for information about what might be happening to me son because she never seemed to talk about it with me as an actual "condition". Pediatricians need to become aware of this problem and need more information on plagio. My new pediatrician was very aware and when my son Tucker who is 5 months had the same flattening at 2 months he immediately referred me to a neurologist and he is now in a helmet and has been for almost two months and his head looks wonderful. My thought is that you still might have a little time. I've heard you can band or helmet until 2 if sutures are still open. I wish that Trevor had stayed in his helmet a little longer honestly but the doctors told me to stop and that it was no longer effective. I think that every little bit helps. Hope my story helps you. Lori in Michigan Mother to Tucker and Trevor OUr Appointment today Ok - we finally saw the neuro-surgeon!!!Kayleigh is 19 months old tomorrow. Everything I researched and knew about her plagio - I was right on - my Ped is so clueless.Basically - my neoro does a rating system. Kayleigh scored 11/15 - which means her plagio is moderate to severe. Her ears is mis-alligned by over 2cm but her facial assymetry is very minor - head head protrudes in the back left instead of in the facial area - so no asymmetry. This means no surgery.The problems such as migranes, tmj, etc are caused by the assymetry and Kayleigh's is so minr we shouldn't ever have a problem.Now as for banding, her fontenelle is still open, so the neuro said we could sill helmet, however he says there are no stats showing if banding really works over 12 months and so he can;t guarantee it would help.He says that he has seen a mild improvement since the e-mails I mailed him a month ago when trying to get in to see him, and that mother nature will continue to round it out although we will never see a nice normal rounding. If we had seen him before 12 months, he would have had us banded by 9 months to get the nice rounding.He says she is a candidate for helmet though but that the latest he has ever banded was 14 months. He says if the band makes a difference he couldn't tell us if it would be due to mother nature or the band at this point cause of her age.So now we are deciding whether to band or not - he says an 18 month old can shift the band as they have the smarts and the strenght to get the band shifted which alters what it is trying to do - so we are still deciding that one,. My neuro said that he was suprised my ped even knew the word plagio as many dont - cause I told him what my ped said - that banding was useless, etc, etc - currently the neuro and his assistant are trying to get the word out there about prevention - she is doing some major educating for him about this, she sent me back with a whole swack of pmaphlets to give my health unit for her. The neuro said I should be thier spokes person jokinly cause I knew as much as them practically!I have to go for now - but I will write more later.All in all - no surgery - but to band or not to band at 18 months, that is the question.- in CanadaFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 , What a relief that Kayleigh doesn't need surgery. That must be a huge weight off of your shoulders! You should be proud of yourself that you took the initiative and educated yourself about this and took matters into your own hands. I think its great that your neuro gave you info to take back to your doctor, hopefully it will help more parents. Good luck with making the decision about whether to band or not. It is a very difficult and personal decision to make. I'm glad to hear that your neuro thinks that there may still be time for the helmet to be effective. Did he say if he thought the plagio was caused by her skull fracture at birth? Take care , and let us know what you decide to do. And remember that we are here for you with whichever path you choose. Niki Kaylie & Danny (STAR grads) Phila., PA ceejhas2babes <gcpopik@...> wrote: Ok - we finally saw the neuro-surgeon!!!Kayleigh is 19 months old tomorrow. Everything I researched and knew about her plagio - I was right on - my Ped is so clueless.Basically - my neoro does a rating system. Kayleigh scored 11/15 - which means her plagio is moderate to severe. Her ears is mis-alligned by over 2cm but her facial assymetry is very minor - head head protrudes in the back left instead of in the facial area - so no asymmetry. This means no surgery.The problems such as migranes, tmj, etc are caused by the assymetry and Kayleigh's is so minr we shouldn't ever have a problem.Now as for banding, her fontenelle is still open, so the neuro said we could sill helmet, however he says there are no stats showing if banding really works over 12 months and so he can;t guarantee it would help.He says that he has seen a mild improvement since the e-mails I mailed him a month ago when trying to get in to see him, and that mother nature will continue to round it out although we will never see a nice normal rounding. If we had seen him before 12 months, he would have had us banded by 9 months to get the nice rounding.He says she is a candidate for helmet though but that the latest he has ever banded was 14 months. He says if the band makes a difference he couldn't tell us if it would be due to mother nature or the band at this point cause of her age.So now we are deciding whether to band or not - he says an 18 month old can shift the band as they have the smarts and the strenght to get the band shifted which alters what it is trying to do - so we are still deciding that one,. My neuro said that he was suprised my ped even knew the word plagio as many dont - cause I told him what my ped said - that banding was useless, etc, etc - currently the neuro and his assistant are trying to get the word out there about prevention - she is doing some major educating for him about this, she sent me back with a whole swack of pmaphlets to give my health unit for her. The neuro said I should be thier spokes person jokinly cause I knew as much as them practically!I have to go for now - but I will write more later.All in all - no surgery - but to band or not to band at 18 months, that is the question.- in CanadaFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 , Great news for Kayleigh! You are such a great Mom for going the extra mile and educating yourself- and the Docs!! I was in this same predicament too, and I essentially informed the neuro of all treatments- not vice versa believe it or not! He admitted he didn't know everything (WOW) and asked me to send him tons of literature which I'm still gathering. At least the hard work will help their future patients with less hassle and more direction! That is a tough question, whether to band or not, but I think I would agree with Anne (especially if all costs may be covered and its convenient for you) that you might want to just give it a try. Look at the road 10 years from now and ask yourself if the decision you are making now will be the right one for your piece of mind down the road. Good luck in your decision making- it is a definite tough call- and I wish you all the best of luck getting there! Please keep us updated on whatever you decide- we support you band or no band!! ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 , Well, at least surgery is not in your future! It sounds like all in all the appointment went well and that the neuro was very knowledgeable and encouraging. I'm glad to hear that. Good luck with your decision to band. I'm sure it will be a real struggle to decide what to do. Either way you have our support. Keep us posted! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 : It sounds like you had a great appt with your neuro. That's wonderful. And the best news of all, no surgery is required. That's interesting that he said the assymetries are what causes the plagio side effects, I was unaware of that & it's so good to know. My Abby's head is still somewhat flat, but her assymetries are pretty minor. So that's a relief for me to hear also. Now you have to make the to band or not decision. I know Cranial Tech treats babies until they're 2. Is there a CT near you in Canada? Maybe you could bring her there for an eval. And with Kayleigh's fontanels still open, you do have a chance to get improvement with a band. The decision is entirely up to you, if you'd like my worthless 2 cents, I'd go for it. What a pity about your clueless pediatrician. That's gotta be so frustrating to you. But you've done a great job trying to get Kayleigh help. Thanks so much for your update. I'm so happy things went well for you & you finally got some answers. Keep us updated on your banding dilemma Debbie Abby's mom DOCGrad MI > Ok - we finally saw the neuro-surgeon!!!Kayleigh is 19 months old > tomorrow. Everything I researched and knew about her plagio - I was > right on - my Ped is so clueless. > > Basically - my neoro does a rating system. Kayleigh scored 11/15 - > which means her plagio is moderate to severe. Her ears is mis- > alligned by over 2cm but her facial assymetry is very minor - head > head protrudes in the back left instead of in the facial area - so no > asymmetry. This means no surgery. > > The problems such as migranes, tmj, etc are caused by the assymetry > and Kayleigh's is so minr we shouldn't ever have a problem. > > Now as for banding, her fontenelle is still open, so the neuro said > we could sill helmet, however he says there are no stats showing if > banding really works over 12 months and so he can;t guarantee it > would help. > > He says that he has seen a mild improvement since the e-mails I > mailed him a month ago when trying to get in to see him, and that > mother nature will continue to round it out although we will never > see a nice normal rounding. If we had seen him before 12 months, he > would have had us banded by 9 months to get the nice rounding. > > He says she is a candidate for helmet though but that the latest he > has ever banded was 14 months. He says if the band makes a > difference he couldn't tell us if it would be due to mother nature or > the band at this point cause of her age. > > So now we are deciding whether to band or not - he says an 18 month > old can shift the band as they have the smarts and the strenght to > get the band shifted which alters what it is trying to do - so we are > still deciding that one,. > > My neuro said that he was suprised my ped even knew the word plagio > as many dont - cause I told him what my ped said - that banding was > useless, etc, etc - currently the neuro and his assistant are trying > to get the word out there about prevention - she is doing some major > educating for him about this, she sent me back with a whole swack of > pmaphlets to give my health unit for her. The neuro said I should be > thier spokes person jokinly cause I knew as much as them practically! > > > I have to go for now - but I will write more later. > > All in all - no surgery - but to band or not to band at 18 months, > that is the question. > > - in Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2007 Report Share Posted August 4, 2007 Cheryl-This is indeed GREAT news!!! We have been waiting 12 long years to hear it and I want to thank you so much for sharing this with all of us!!! Onward and upward, and hopefully very soon!!! Gayle Our appointment today So I got some news from Dr. G today that I wanted to pass along for those that don't already know... His funding came through!!!! I asked him how long it will take to get fully up and running with the new tests, etc. and he said he doesn't know but they are trying to go as fast as they can. They *will* be doing viral genomics testing with our kids!!!! For me, this is great news as Gryffin *needs* more help with the viruses and I really think he has more than just ebv and hhv6 issues. Don't know about the immune modulator as I forgot to ask - way too excited about the viral genomics so I got myself a little side tracked. He is definitely planning to get much more aggressive. cheryl ________________________________________________________________________ AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2007 Report Share Posted August 6, 2007 Good! You can ask all the questions I didn't! Definitely ask him about the immune modulator! Please let us know! Also, would you mind asking if the funds are coming from NIH? Cheryl On Aug 5, 2007, at 10:42 PM, thefamily007 wrote: > What AWESOME news!!! Dr. G has been saying he really feels this is > the " missing piece " with so many kids...certainly with mine. I > hope we'll also be hearing similar news about the immune modulators in > the not-too-distant future. Our next appt. is this Thursday -- can't > wait to discuss it with him! > > Donna > > > > > > > > > > > > > Cheryl-This is indeed GREAT news!!! We have been > > > > waiting 12 long years to hear it and I want to thank > > > > you so much for sharing this with all of us!!! > > > > Onward and upward, and hopefully very soon!!! > > > > > > > > Gayle > > > > > > > > > > > > Our appointment today > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > So I got some news from Dr. G today that I wanted to > > > > pass along for > > > > those that don't already know... > > > > > > > > His funding came through!!!! I asked him how long it > > > > will take to > > > > get fully up and running with the new tests, etc. > > > > and he said he > > > > doesn't know but they are trying to go as fast as > > > > they can. They > > > > *will* be doing viral genomics testing with our > > > > kids!!!! For me, > > > > this is great news as Gryffin *needs* more help with > > > > the viruses and > > > > I really think he has more than just ebv and hhv6 > > > > issues. Don't know > > > > about the immune modulator as I forgot to ask - way > > > > too excited about > > > > the viral genomics so I got myself a little side > > > > tracked. He is > > > > definitely planning to get much more aggressive. > > > > > > > > cheryl > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________________ > > > > AOL now offers free email to everyone. Find out > > > > more about what's free from AOL at AOL.com. > > > > > > > > > > > > [Non-text portions of this message have been > > > > removed] > > > > > > > > > > > > > > __________________________________________________________ > > > Shape in your own image. Join our Network Research Panel > > > today!http://surveylink./gmrs/_panel_invite.asp?a=7 > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2007 Report Share Posted August 6, 2007 Donna-Please share whatever great news you hear on Thursday with all of us parents! Our appointment today > > > > > > > > > > > > > > > > > > > > > > > > So I got some news from Dr. G today that I wanted to > > > pass along for > > > those that don't already know... > > > > > > His funding came through!!!! I asked him how long it > > > will take to > > > get fully up and running with the new tests, etc. > > > and he said he > > > doesn't know but they are trying to go as fast as > > > they can. They > > > *will* be doing viral genomics testing with our > > > kids!!!! For me, > > > this is great news as Gryffin *needs* more help with > > > the viruses and > > > I really think he has more than just ebv and hhv6 > > > issues. Don't know > > > about the immune modulator as I forgot to ask - way > > > too excited about > > > the viral genomics so I got myself a little side > > > tracked. He is > > > definitely planning to get much more aggressive. > > > > > > cheryl > > > > > > > > > > > > > > > > > > > > __________________________________________________________ > > > AOL now offers free email to everyone. Find out > > > more about what's free from AOL at AOL.com. > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > __________________________________________________________ > > Shape in your own image. Join our Network Research Panel > > today!http://surveylink./gmrs/_panel_invite.asp?a=7 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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