Guest guest Posted November 4, 2001 Report Share Posted November 4, 2001 Ok bear with me im not really good at using theese boards. Ok my son is 7 months and I think he has Plagio and brach how ever you spell it im not sure. well I kept bring it up to his doctor and he kept saying it will round out on its own. So I made an appointment with a pediatric neurosegeon. Thats who I should of made an appointment with right? His appointment is in December. My questions is this doctor gonna know what Im talking about when I go in there? Should I bring anything with me? Any advice on what I should say to him? What is he gonna do while I am there? Any help would be grateful. Please email me at DMiMi1228@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2001 Report Share Posted November 4, 2001 Hi & welcome to our group!!! Don't worry about " not being good on these boards " ....all us in this group understand what you're going through right now. Your son has both bracheo & plagio? So he's flat on one side of his head as well as in the back of his head? Your ped. keeps tellng you his head will round out on it's own, but at 7 mos and it still hasn't improved, it could be unlikely that it will improve on it's own. Have you had xrays or a CT scan done to rule out craniosynostosis (premature fusing of the skull bones)? If not that's something the neurosurgeon might suggest doing. The neurosurgeon is definitely the right person to see with your son's plagio/bracheo. He should know what you're talking about (he better!!!!) but it is definitely a great idea to go into your appt with as much information as you can find. Check out this website for great information: http://www.plagiocephaly.org/support/default.htm At your son's appt with the neuro, the neuro will most likely thoroughly examine your son's head, take measurements, take photos of each side of your son's head, and possibly refer you for xrays or a CT scan like I mentioned earlier to rule out craniosynostosis. He then might suggest you get a helmet/band to treat the plagio/bracheo, depending on your son's severity. Ultimately the decision is up to you if you desire to go into helmet therapy to correct your son's flatness. You do need a prescription before any helmet/band treatments can begin. I hope I helped some. Please keep us updated on your son's appt next month. Don't hesitate to ask any more questions!!!! Debbie Abby's mom 3/1/00 DOCgrad 2/16/01-6/22/01 MI > Ok bear with me im not really good at using theese boards. Ok my son > is 7 months and I think he has Plagio and brach how ever you spell it > im not sure. well I kept bring it up to his doctor and he kept saying > it will round out on its own. So I made an appointment with a > pediatric neurosegeon. Thats who I should of made an appointment with > right? His appointment is in December. My questions is this doctor > gonna know what Im talking about when I go in there? Should I bring > anything with me? Any advice on what I should say to him? What is he > gonna do while I am there? Any help would be grateful. Please email > me at DMiMi1228@a... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2001 Report Share Posted November 4, 2001 Hi, I agree woth Debbie and will add. Have you checked out Cranial technologies, http://www.cranialtech.com/about/index.html They have refering Drs who are used to this condition and prescribe the helmet if your child needs it. Also try to see a Dr sooner because valuble growing time for correction is being wasted if your child does need the helmet. Lorraine. > > Ok bear with me im not really good at using theese boards. Ok my > son > > is 7 months and I think he has Plagio and brach how ever you spell > it > > im not sure. well I kept bring it up to his doctor and he kept > saying > > it will round out on its own. So I made an appointment with a > > pediatric neurosegeon. Thats who I should of made an appointment > with > > right? His appointment is in December. My questions is this doctor > > gonna know what Im talking about when I go in there? Should I > bring > > anything with me? Any advice on what I should say to him? What is > he > > gonna do while I am there? Any help would be grateful. Please > email > > me at DMiMi1228@a... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2001 Report Share Posted November 4, 2001 Hi DMimi and welcome to the group. You sound like a great parent doing the right thing and 7 months of age is still a great time to be on top of all of this your son is young and treatment remains one of your options so that is wonderful keep up the good work. It is always nice to go to a neurosurgeon that has some familiarity with plagiocephaly and you may want to call the office and ask to speak with his nurse and just ask her/him if they have ever treated children with plagiocephaly and ask her to define it for you or in brief what are the treatment options they use? I spoke with a ped neuro when I moved to Memphis and his nurse told me plagio was skull fusion and the only treatment this doc does is surgery intervention and I knew this was going to be a waisted trip and time. If you can check out finding a dr on the plagio home page- I think Debi gave you a link to it but if not then I will try and find the address. I am out of town so I dont have access to my list of helpful web sites. If you let us know where you are from there may be other moms close to you that could also recc a good or bad dr for that matter. Whatever you do it is always best to go armed with information so you are starting out at the right place. We have lots of moms and dads and experiences and are here to help you every step of the way. It is a very scary time but you are a good parent and if you follow your heart you will do what is right. Please feel free to ask us anything at anytime we are always here. I have a 10 month old son who is a DOC grad and I couldnt be happier. Welcome again- we are so glad you found us! Beck mom to brian memphis,. tn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2001 Report Share Posted November 5, 2001 If you can check out finding a dr on the plagio home page- I think Debi gave you a link to it but if not then I will try and find the address. http://www.plagiocephaly.org/ppcs-location.asp Kendra in Canadawww.plagiocephaly.org/support/Plagiocephaly/joinhttp://geocities.com/kendraandhanna/ ----- Original Message ----- From: rebecca Plagiocephaly Sent: Sunday, November 04, 2001 2:55 PM Subject: Re: need some advice? Hi DMimi and welcome to the group. You sound like a great parent doing the right thing and 7 months of age is still a great time to be on top of all of this your son is young and treatment remains one of your options so that is wonderful keep up the good work. It is always nice to go to a neurosurgeon that has some familiarity with plagiocephaly and you may want to call the office and ask to speak with his nurse and just ask her/him if they have ever treated children with plagiocephaly and ask her to define it for you or in brief what are the treatment options they use? I spoke with a ped neuro when I moved to Memphis and his nurse told me plagio was skull fusion and the only treatment this doc does is surgery intervention and I knew this was going to be a waisted trip and time. If you can check out finding a dr on the plagio home page- I think Debi gave you a link to it but if not then I will try and find the address. I am out of town so I dont have access to my list of helpful web sites. If you let us know where you are from there may be other moms close to you that could also recc a good or bad dr for that matter. Whatever you do it is always best to go armed with information so you are starting out at the right place. We have lots of moms and dads and experiences and are here to help you every step of the way. It is a very scary time but you are a good parent and if you follow your heart you will do what is right. Please feel free to ask us anything at anytime we are always here. I have a 10 month old son who is a DOC grad and I couldnt be happier. Welcome again- we are so glad you found us!Beck mom to brianmemphis,. tnFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 Dear Janet, Thanks for responding. I did call the Mayo Clinic in Florida and they actually told me I had too many problems for them.lol. That was sort of a shocker. It was mainly because of the Erythromelalgia and they said only the main Mayo's treat EM. I'm not sure if I have any hope of them treating that in Naples at the Cleveland Clinic either, but as miserable as it can make me at times, so many other things are worse right now. Of course, I don't go anywhere without ice packs either, so that does show how it affects my day-to-day life. It is amazing what you learn to get used too. I went out with my girls today for my birthday and we went to lunch and to one store. I was in the wheel chair the whole time. To say I was exhausted when I got home is an understatement. They are picking up dinner now but at least for once I got out to do something besides going to the doctor. It's been ages since I've been able to do that. My left leg is swollen pretty badly, but it could be much worse. I hope the Cleveland Clinic in Naples can help me, but if they can't then I'll be going to the main Mayors next. I have to be sure that nothing else is wrong. Like you said I have too many things going on at once. I'm sure I have an inflamed vein in my left leg since it is so painful and that might be causing the edema. I'm down to 15mg on the predinsone now, which is a major deal for me. I've been at 60mg for the past 2 months trying to get over the chest and asthma problems from trying Humira. Thanks for writing Janet. I'll let you know how the Cleveland Clinic goes. Thanks again, Fran Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 Dear Marti, thanks so much for responding. I’m glad to know I’m not alone on the neuropathy situation. Not that I would wish it on anyone, or the swollen glands. I thought I had read once where PA could cause swollen glands, but I wasn’t sure. I plan on keeping the appointment with the Cleveland Clinic in Naples and hope I get a good doctor that is willing to explore some possibilities with me. I know my family doctor is at the end of his rope. I guess I should be glad he lasted as long as he did. I’ve had them poop out after only 3 visits. I feel pretty good today since I actually got out, but I’m paying for it tonight. It was worth it though since I went out with my girls and we had a good time. Thanks for writing and it really helps to know I’m not alone. Love, Fran Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2004 Report Share Posted June 29, 2004 Dear Jane, Sometimes it is very overwhelming and I get down. I do my best not give up or give in to negative thoughts. It only makes me feel worse and it's the last thing I need. It helps a lot to know I'm not alone and that people like you are thinking good thoughts for me. It may seem like a little thing, but it isn't. When I'm at my worst, I remember everyone on this list and know there is still hope for me and I still have a future to face, regardless of what it brings. So thanks for thinking of me and every day is a possibility of feeling better. I just have to remember that on the bad days. Thanks again, Love, Fran Re: [ ] Need some advice? Wow Fran, I don't know how you put up with everything that's going crazy in your body I wish there was something I could say or do that would help you. You'll be in my prayers. Jane Quote Link to comment Share on other sites More sharing options...
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