Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 hey nancy, i am far northern il by great america. kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2002 Report Share Posted June 7, 2002 Welcome, Fern! My nephew just visiter NZ and said it was beautiful! This is such a wonderful group of people...I hope you will share whatever you need or want to, as there is much compassion, caring, and great information here. With Hope... Tess - Portland, Oregon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2002 Report Share Posted June 7, 2002 Welcome Fern, I am also somewhat of a new member...but I can tell you that all of these people (my extended family I call them) are terrific. They have so much knowledge that it is amazing. I have found out so much from the links that get sent to me or just by reading other letters. Please feel free to come on and complain, whine, just vent. We all know what you are going through and we understand. That in itself is a great help. It is great to know that someone else knows what you are going through. Hope that I or my extended family ( I love you guys) can be of some help to you.... Bridgette.....Maine Delwyn <Fernromer@...> wrote: Hello everyone, My name is Fern, I live in NZ and have found out recently I have RA. Hope to get to know you all in time. --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 boy you remind me alot of me!! i'm kathy 42 they are now leaning towards reactive arthritis, ankylosing spondylitis, fibromyalgia. i just got my last bloodwork back yesterday, sed rate 40, c reactive protein positive. i have had carpal tunnel surgeries on both hands. ( i can remember not being able to butter a piece of bread) also tarsal tunnel on both feet. my hands were doing so good. then a couple weeks ago my right wrist was hurting sp bad i had to dig out a brace to wear. it has been almost 4 years since they have given me trouble. i was disappointed. i was to attend a memorial service. but i was running late and didn't feel good and was still 45 minutes away. i called and sent my sympathies. i turned around and cried all the way home. i am running a fever and feel so sick to my stomach. i took my full 5 mgs prednisone today. wonder if that was what set off my stomach. i feel like i am destined to just sit in my house. not supposed to be in the sun. seems the last 5 years at least 2 weeks. usually around 4th of july i just can't go out. my eyesight gets strange and i get dizzy. i hate this. but at the same time i am thankful it is not worse as i know it can be. i just wish i could have my life back. kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Hi Joanne, Welcome to the group! I shouldn't have any problems remembering - that's my son's name too! It sounds like you've already gotten pt and the DOC band working for you- fantastic! When you say, it rotates to the right, I'm not sure what you mean. My son had a DOC band and it did not move, except for a little slippage to the front. Can you explain what you mean by it rotates to the right? ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Hello! Welcome to the group! My name is . My daughter Lauryn has mild plagio due to Hydrocephalus. She aslo has microencephaly. It is nice meeting you. Hugs, and Family Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Hi Joanne & welcome to our group! We have a lot of posts inquiring about shifting bands during the first week or even 2. The DOCband is originally loose on the child's head. Cranial Tech makes them this way so the child won't outgrow the band too fast & need a 2nd band too soon. Does 's band shift so much that it's affecting his sleep? There really is no reason why after 2 wks he shouldn't be able to sleep in it comfortably. What has CT said about this? Is bothered by it? How has his tort improved with PT? With 's younger age, I'm sure he'll get fast & great correction (as long as worn full time of course!). Welcome again to our group! I hope will be able to wear his band full time soon! Debbie abby's mom DOCGrad MI > Hi all. I just joined your group. My son has tort/moderate > positional plagio. He has been in PT for 4 months & DOC band for 2 > weeks. The helmet rotates to the right, so he has yet to sleep in it! > He only wears it during awake times which isn't long enough. Any tips > would be greatly appreciated. > > Thanks, Joanne & (7.5 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Hi has right forehead bossing. The orthotist left a space for growth on the left side of the helmet, the right side fits snug. So when Nick lays on his back then moves his head to either side the helmet shifts...hope that makes sense! Joanne & BC, Canada Re: new member Hi Joanne,Welcome to the group! I shouldn't have any problems remembering - that's my son's name too! It sounds like you've already gotten pt and the DOC band working for you- fantastic! When you say, it rotates to the right, I'm not sure what you mean. My son had a DOC band and it did not move, except for a little slippage to the front. Can you explain what you mean by it rotates to the right? ' MomFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Hi Debbie Nick has full ROM now, but still a small tilt. He doesn't mind his helmet...it's me that is worried about him sleeping in it! If he moves his head enough to one side his left ear gets folded over by the helmet. So he wears it when awake so I can reposition it if need be. Joanne & BC, Canada Re: new member Hi Joanne & welcome to our group!We have a lot of posts inquiring about shifting bands during the first week or even 2. The DOCband is originally loose on the child's head. Cranial Tech makes them this way so the child won't outgrow the band too fast & need a 2nd band too soon. Does 's band shift so much that it's affecting his sleep? There really is no reason why after 2 wks he shouldn't be able to sleep in it comfortably. What has CT said about this? Is bothered by it?How has his tort improved with PT?With 's younger age, I'm sure he'll get fast & great correction (as long as worn full time of course!).Welcome again to our group! I hope will be able to wear his band full time soon!Debbie abby's mom DOCGradMI> Hi all. I just joined your group. My son has tort/moderate > positional plagio. He has been in PT for 4 months & DOC band for 2 > weeks. The helmet rotates to the right, so he has yet to sleep in it! > He only wears it during awake times which isn't long enough. Any tips > would be greatly appreciated.> > Thanks, Joanne & (7.5 months)For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2002 Report Share Posted July 2, 2002 Hi Joanne and welcome! If you are keeping the band off because it rotates then you need to get into the CT clinic just as soon as you can. needs to be wearing it 23 hours a day to get max correction! How is he doing with it during the day? Welcome to the group and I hope you will share more of your story with us! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2002 Report Share Posted July 2, 2002 Hi Joanne, and welcome to the group! In the beginning of treatment, it is quite common for the bands to shift some. The bands are made to fit a little loose, to help extend the life of the band. If the band was made to sit real close to the head, then with the first growth spurt, the child may outgrow the band and lose out on more correction. That being said, if you feel that it is shifting too much, which it sounds like it is, give your ortho a call, and adjustment might be needed. Good luck and keep us posted! Niki Kaylie & Danny (STAR grads) Phila., PA > Hi all. I just joined your group. My son has tort/moderate > positional plagio. He has been in PT for 4 months & DOC band for 2 > weeks. The helmet rotates to the right, so he has yet to sleep in it! > He only wears it during awake times which isn't long enough. Any tips > would be greatly appreciated. > > Thanks, Joanne & (7.5 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2002 Report Share Posted July 2, 2002 Joanne, Yes, that makes sense to me, and I would guess that if you have already addressed this with your ortho, and you feel comfortable with it shifting, if its not a huge shift and just a little shifting (my son's also shifted slightly forward)- then perhaps its just going to be that way until some growth happens. Are you using a locally made band, DOC band or Starband? Keep us posted. ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2002 Report Share Posted July 2, 2002 Joanne, That still doesn't sit well with me. I would have them shave around ' ear when it was so close it would pinch it. Are they saying this is normal for it to fold his ear over? I honestly have never heard of this. What type of helmet is it again? It seems like the optimum time to keep it on is at night when they are sleeping on those soft skulls, so that it will be protected from 8+ hours on a flat surface. Maybe I am just not familiar with this- I hope someone can chime in with their opinion- but I feel that you need to address this with the ortho regarding the ear folding over and it shifting- I have not heard of where it shifts completely so much. I don't want to concern you, but I do at the same time! There have been problems with orthotists in the past, so I only want to help you if that may be what's happening! Some orthotist's are less experienced than others, so take that into consideration if only to start getting some of those concerns addressed. I hope others can share if this is what is happening with their helmets as well. ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2002 Report Share Posted July 2, 2002 The orthotist called it a plagiocephaly helmet. It shifts a lot!! So much so that it causes his left ear to fold over. That is why he only wears it during awake times. Joanne & Re: new member Joanne,Yes, that makes sense to me, and I would guess that if you have already addressed this with your ortho, and you feel comfortable with it shifting, if its not a huge shift and just a little shifting (my son's also shifted slightly forward)- then perhaps its just going to be that way until some growth happens. Are you using a locally made band, DOC band or Starband? Keep us posted. ' MomFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2002 Report Share Posted July 5, 2002 Hey Joanne welcome to you and - I am surprised that the people at CT want you keeping it off at night-how much does it rotate???? What are they saying about it? Have you tried using repositioning devices while he is in bed to keep him still and keep it from rotating? That might be worth a try. Here are a couple of links you can take a look at. We would love to hear more about you and . Welcome we are glad you found us! beck Butterfly Support Pillow, positioning aid for premature infants files Baby Pillow, Baby Gift, Prevent Flat head, Baby Gear, Infant Pillow repostiioing Repositioning Techniques Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Welcome to the group, Sal! Aloha, Sue Hi, This is Sal and I'm sure many of you know me from the MCS groups. I just joined and wanted to say hi. I've seen lots of good forwards from this group so decided to become an " insider " . LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Hey Sal, Welcome, it's great to have you here. [] New Member > Hi, > > This is Sal and I'm sure many of you know me from the MCS groups. I > just joined and wanted to say hi. I've seen lots of good forwards > from this group so decided to become an " insider " . LOL > > I currently live in my vehicle as it is the only " safe " place I could > find. Mildew is a real problem here in Hawaii and most homes and > furniture are loaded with it. I stopped sleeping on beds long before > moving into the vehicle. It seems the extreme heat in the daytime > makes it difficult for the mildew to grow in a vehicle. > > Aloha, > > Lourdes " Sal " Salvador, salvadorlourdes@... > www.mcs-awareness.org, www.mcs-awareness.org/19670.html > > > > > > > > > FAIR USE NOTICE: > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2007 Report Share Posted January 30, 2007 Hi Abbie My name is Bryony; I am 28 and also have BPES. I also have POF and have been told that we would need donor egg IVF. I am very lucky in the fact that I had a happy accident age 23 leading to the birth of my BPES free daughter so have decided against IVF. If you want to chat about this I'm all ears but am not very comfortable chatting about it in an open forum so please e-mail me direct brtyony2@... Take care B >-- Original Message -- >blepharophimosis >From: " abbie_gog " <abbie_gog@...> >Date: Fri, 26 Jan 2007 12:18:19 -0000 >Subject: blepharophimosis new member >Reply-blepharophimosis > > > >Hi > >I was born with BPES, and came accross this group while trying to find >out more about the condition. I had surgery when I was 18 years old, >which was very successful and improved my appearence and confidence >significantly. I have treid to post some pics, as I hope it will give >reassuarence to some of the parents here. > >Until now, my eyes have never really been a problem for me, I didn't >even realise it was a 'syndrome' . I always believed it was just 'a >thing that I got from my dad'. However, I have been trying to get >pregnant for a while now, and have found out that I have 'premature >ovarian failure' (POF). I have also found out that this is closely >linked with women who have BPES. I was wondering if anyone is in the >same situation as me, or know's of anything that might be able to help? > >At the moment, we are persuit IVF, however our chances are pretty slim. >If this fails, we will have to resort to egg donation. I would also >like to add, that I am 31 years old now, and if I knew earlier that I >was a high risk of POF, then I would have treid to have children >earlier, or looked into freezing my eggs. If there is anyone out there >who is in their early 20's, or any mom's who have girls with BPES, then >please baer this in mind, as things could have been very different for >me if I had have known more about this when I was younger. > >I will continue to try to add some photos! > >Abbie x > > ___________________________________________________________ Tiscali Broadband only 9.99 a month for your first 3 months! http://www.tiscali.co.uk/products/broadband/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 Ciao Massimo Welcome to the group. We have a few members who live in Italy. I have met 2 families who live in Milan, each has a young daughter. There are some very good surgeons in Italy, and I am sure that it is just a matter of time before you are able to find somebody who can help to prepare a treatment plan for your son. Take a look at the database on the site – you will find the two families. Here are the instructions – Click Database Click BPES List Then in the search box, put in Italy. Good luck, and once again welcome to the group. Shireen From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of massimoizzo1970 Sent: 18 May 2007 20:54 blepharophimosis Subject: blepharophimosis New Member Hello I'm Massimo from Italy My 2nd son, Francesco, has the BMES, he is 7yo I'm starting to search an expert in Italy, can anyone address me? thanks massimo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2007 Report Share Posted May 23, 2007 Hi Massimo sono Tamara, la mamma di Alice.. Puoi trovare le foto della mia bimba nella sezione di questo spazio. (Alice from Milan) La mia bimba è stata operata a 5 mesi e ora siamo in attesa di organizzareil prossimo intervento... Se vuoi contattarmi liath_6@... tamara.laineri@... > > Hello > > I'm Massimo from Italy > My 2nd son, Francesco, has the BMES, he is 7yo > I'm starting to search an expert in Italy, can anyone address me? > thanks > > massimo > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2007 Report Share Posted May 27, 2007 Ciao Tamara Mio figlio Francesco ha ormai 7 anni e mezzo, la diagnosi gliela fece la Primario di Chirurgia pediatrica del Niguarda, che me lo voleva far operare a 3 anni, io non ero molto soddisfatto e sono andato al San Raffaele dal primario di chirurgia estetica , dopo essere andato in Germania da una specialista dell'occhio che usa la medicina omeopatica , e dal colloquio è emerso che l'intervento non poteva essere risolutore in un bambino sì piccolo e che se non sussistevano patologie per l'occhio, si poteva aspettare. Da allora ogni sei mesi Francesco va a visita e finora, a parte un pò di astigmatismo, non c'è problema; a parte a scuola gli amichetti che sono un pò carognette ... Ora sto cominciando a sondare il campo perchè il primario di allora non c'è più e lui mi aveva parlato di un centro Pompidù in Francia. Al ministero della Salute mi hanno detto che la BPES non è nella tabella delle malattie rare , per ora, voi con l'intervento come avete fatto? Dove l'avete fatto? non vorrei essere troppo invasivo scusatemi e grazie anticipatamente per le risposte che potrete fornirmi. saluti Massimo > > > > Hello > > > > I'm Massimo from Italy > > My 2nd son, Francesco, has the BMES, he is 7yo > > I'm starting to search an expert in Italy, can anyone address me? > > thanks > > > > massimo > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 Ciao Francesco, la nostra storia inizia con la nascita di Alice e la diagnosi anche noi dal primario del Niguarda (D.ssa Piozzi) Anche mio marito è affetto da BPES e ha subito in totale 3 interventi che hanno risolto la maggior parte dei problemi legati all'apetto estetico della sindrome (Mio marito è della Repubblica Ceca e gli interventi sono stati eseguiti tutti nel suo paese) La scelta di intervenire presto su Alice è stata presa in considerazione della ptosi grave, Alice infatti aveva l'apertura non sup. a 1 mm su un occhio e 1 mm e qualcosa nell'altro (lo si vede bene dalle foto pubblicate) e inoltre da una vistosa asimmetria che stava sfociando in ambliopia. L'intervento lo ha eseguito Dr. Preis presso il Niguarda e devo dire che ci siamo trovati molto bene perchè non ha avuto alcuna difficoltà ad operare una bimba di 5 mesi (tutti gli altri medici con i quali siamo entrati in contatto ci avevano molto scoraggiato proprio perchè ritenevano Alice troppo piccola) Invece il post-intervento è stato di molto superiore rispetto alle nostre aspettative e il cambiamento non solo estetico ha migliorato moltissimo lo sviluppo psico-fisico motorio di Alice. Era come si fosse svegliata all'improvviso! Inoltre la ripresa è stata rapidissima (nel giro di 10 giorni le avevano già tolto i punti e ora le cicatrici sono lievissime e spesso sono scambiate per rima palpebrale) Adesso Alice ha quasi 2 anni (li compierà il 3 luglio), apre discretamente entrambi gli occhi e l'ostruzione è limitata all'epicanto inverso. Secondo le ultime previsioni del Dr. Preis il prossimo step sarà la cantoplastica, poi se necessario una seconda sospensione ed infine intorno ai 7 anni vorrebbe concludere fissando i canti interni in modo definitivo al setto nasale per evitare che si sformino con la crescita. Devo dire che ho scelto di fidarmi di Preis perchè mi è sembrato uno dei pochi con una esperienza nella correzione della Bpes sufficiente, e inoltre al Niguarda quando andiamo ai controlli periodici (cadenziati circa ogni 3 mesi per controllo visivo e ortottico) abbiamo notato che ci sono sempre altri casi di Bpes. (ad incontrato in reparto una decina di casi) Anch'io so che la BPES in Italia non è inclusa nelle malattie rare (NON CAPISCO IL PERCHE' PERO'!!!! In tutti gli altri paesi lo è) e non so bene se questo comporta il fatto che dopo i 6 anni gli interventi vanno pagati. L'operazione di Alice è stata effettuata in ospedale con l'ASL. Questa è la nostra esperienza e spero ti possa essere utile. Un caro abbraccio Tamara, Alice e Radek >From: " massimoizzo1970 " <massimoizzo1970@...> >Reply-blepharophimosis >blepharophimosis >Subject: blepharophimosis Re: New Member >Date: Sun, 27 May 2007 19:39:59 -0000 > >Ciao Tamara > >Mio figlio Francesco ha ormai 7 anni e mezzo, la diagnosi gliela >fece la Primario di Chirurgia pediatrica del Niguarda, che me lo >voleva far operare a 3 anni, io non ero molto soddisfatto e sono >andato al San Raffaele dal primario di chirurgia estetica , dopo >essere andato in Germania da una specialista dell'occhio che usa la >medicina omeopatica , e dal colloquio è emerso che l'intervento non >poteva essere risolutore in un bambino sì piccolo e che se non >sussistevano patologie per l'occhio, si poteva aspettare. >Da allora ogni sei mesi Francesco va a visita e finora, a parte un >pò di astigmatismo, non c'è problema; a parte a scuola gli amichetti >che sono un pò carognette ... >Ora sto cominciando a sondare il campo perchè il primario di allora >non c'è più e lui mi aveva parlato di un centro Pompidù in Francia. >Al ministero della Salute mi hanno detto che la BPES non è nella >tabella delle malattie rare , per ora, voi con l'intervento come >avete fatto? >Dove l'avete fatto? >non vorrei essere troppo invasivo >scusatemi e grazie anticipatamente per le risposte che potrete >fornirmi. > >saluti > >Massimo > > > > > > > Hello > > > > > > I'm Massimo from Italy > > > My 2nd son, Francesco, has the BMES, he is 7yo > > > I'm starting to search an expert in Italy, can anyone address me? > > > thanks > > > > > > massimo > > > > > > > _________________________________________________________________ Sai tutto sul cinema? Gioca ad , Gratis su Messenger! http://www.messenger.it/giochi_e_attivita.html?gameID=10401408 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2007 Report Share Posted June 19, 2007 Welcome I also .. have a web page on my space... Anyone.... eles.. ~ just add me .. ill add u so u can see pics.myspace.com/dawnmarie2 <stuck_n_tx@...> wrote: Hello to all,I just found this site. I'm actually excited about finding this site. I have tried for soon to be 18 years to get information regarding blepharophimosis. I have 4 biological children .. 2 sons (24, 17), 2 daughters (15, 13). I have 2 children with blepharophimosis, and 2 without. My 17 & 15 year olds have it. They are wanting more information for themselves, as well. Our knowledge of this is limited at best. We are hoping to get more from here. Any and all would be greatly appreciated. I'd like to say thanks in advance .. Blessings to all, PS ... I have a myspace acct with photos .. you're more than welcome to go look.myspace.com/jesusnameapostolic Pinpoint customers who are looking for what you sell. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2007 Report Share Posted June 19, 2007 whats your myspace account? <stuck_n_tx@...> wrote: Hello to all,I just found this site. I'm actually excited about finding this site. I have tried for soon to be 18 years to get information regarding blepharophimosis. I have 4 biological children .. 2 sons (24, 17), 2 daughters (15, 13). I have 2 children with blepharophimosis, and 2 without. My 17 & 15 year olds have it. They are wanting more information for themselves, as well. Our knowledge of this is limited at best. We are hoping to get more from here. Any and all would be greatly appreciated. I'd like to say thanks in advance .. Blessings to all, PS ... I have a myspace acct with photos .. you're more than welcome to go look.myspace.com/jesusnameapostolic Be a better Heartthrob. Get better relationship answers from someone who knows. Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 www.myspace.com/jesusnameapostolic > Hello to all, > > I just found this site. I'm actually excited about finding this site. > I have tried for soon to be 18 years to get information regarding > blepharophimosis. I have 4 biological children .. 2 sons (24, 17), 2 > daughters (15, 13). I have 2 children with blepharophimosis, and 2 > without. My 17 & 15 year olds have it. They are wanting more > information for themselves, as well. Our knowledge of this is limited > at best. We are hoping to get more from here. Any and all would be > greatly appreciated. I'd like to say thanks in advance .. > > Blessings to all, > > > PS ... I have a myspace acct with photos .. you're more than welcome > to go look. > > myspace.com/jesusnameapostolic > > > > > > > --------------------------------- > Be a better Heartthrob. Get better relationship answers from someone who knows. > Answers - Check it out. > Quote Link to comment Share on other sites More sharing options...
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