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Well yesterday I got a call from my boyfriend of 5 years mother. She was crying hestarically and told me that my nephew (I consider my boyfriends family my family) was diagnosed with cystic fibrosis. I am not too familiar with the disease but I know it causes mucous in the organs...I am still researching. David (my nephew) has been sick since he was a newborn and he is now 4. His mother dosen't provide the best diet for him.
Immediatly my boyfriends mom blamed it on the mother of my nephew that she is making him sick. I have read that both parents must be a carrier of the disease to pass it on to the child. Anyone out there with someone they know or information on this disease or maybe somewhere I can go...I am really torn in half about this and can't keep my tears back. Please someone respond, my boyfriend is away on business until the 26th with no way to reach him...I have no one to reach out too and I am afraid that the family will split because of this devistating news. Please keep my family in your prayers.
(sorry Lynn I know this isn't about orthodontic treatment but I needed to get it out)
Hi Katie, sorry you have had this bad news about your nephew. You are right that both parents must be carriers of the CF gene for a child to be affected, and the risk of a child being affected is 1 in 4. David's mother isn't making him sick. He was born with a genetic disorder and it's nobody's fault. Finding out that a loved one has an incurable disease is going to be upsetting for everyone and often people lash out in anger and/or ignorance when they are upset. It's kind of natural to be looking for someone to blame. We all do it sometimes.
I haven't had experience of CF in my own family, but I do know that although incurable, it's not untreatable. The prognosis for a CF patient is much much better than it used to be, and new treatments are being developed all the time. Children with CF didn't used to survive past their teens, but recent stats show that almost half of CF patients are now over 18.
Getting David diagnosed will enable him to get the treatment he needs to start feeling better. And hopefully once you've all come to terms with it a little, you'll be able to do what's best for David as a family. Maybe you could help by doing some research and pass it onto your boyfriend's mum and David's mum, to help them understand it better too.
This is a UK site, but it looks like it has some helpful information.
Thank you Lisa for that information. It really helps having anyone at all talk to me about it. It is heart breaking becuase I know that he is only 4 years old and dosen't understand. I am trying to hang in there.
I'm so sorry about your nephew. And from reading your previous posts, it sounds like you've had a tough journey with your mouth as well, from the wallet to the tonsils. You're in my thoughts and I hope that this is just a really low point and that it goes up from here. You deserve some good news right about now!
Thank you for your support. This site has really been a helping hand to me. I am just trying to remeber that this is about David and no one else. My prayers are with him and I am trying to keep my head high
Well spacers on Tuesday for me. I have to get 8 total! Ouch...everyone is scaring me with the horror stories of spacers. I was going to go snowboarding on Monday but my finances are not in line enough and I want to spend time with my nephew.
Also, my nephew went to the doctor again yesterday for a final sweat test and it was confirmed that he does have cystic fibrosis. I have sort of come to terms that no matter how angry or sad I am, the disease is what it is and I should cope. I have to be strong and happy because if I am weak and sad he will take those traits also.
Anyone with advice or experiences with spacers or cystic fibrosis...please share with me, I am in dire need of some support with my boyfriend gone for another week!
Well today I got my spacers in! I have had them for about 4 hours and no pain. More of an annoyance than anything else. I am in the process of eating my lunch and I keep feeling like I have to pick something out of my teeth...but I dont!
Well here's how it went:
I arrived at my ortho's office right on time and was checked in. I put my inital payment ($1,500 ) down and was called into the chair. The assistant explained to me that i was going to be getting spacers for my herbst and that about 6 months from now I will be braced! I got 8 total and one of them was real pesky. The assistant could not get it in, so she called the ortho over and he had to put some special sting in and told me to come back tomorrow on my lunch hour to get a normal spacer put in.
I know that it has only been 4 hours but so far no pain...like I said, I definitaly know they are there but not a real throbbing pain. I will keep you updated on how I am feeling. My appointment is on Feb. 7th to receive my Herbst! The countdown has begun...
Ok I lied, the pain is starting to set in!!! It has been about 7 1/2 hours since I have been spaced and it is killing me. I have to get one more put in tomorrow on my lunch and then it is a 2 week waiting game. Man does my mouth hurt. I took some Tylonal about an hour ago and it dosen't seem to be helping...I wonder how it will be for dinner?? My boyfriend is returning tomorrow from his trip and we wanted to go to dinner...
My nephew went today for his team assignment and we will find out the specifics on the disease's progress on his organs. Will keep updated. My boyfriend still does not know and it is not going to be good having to tell him. Please keep my family in your prayers
I feel your pain Katie! I got spacers put in today too. I also got braces too. But so far so good - other than my shock to the whole thing. But I'm slowly getting over it, I think.
Hope they're able to get that stubborn spacer in. They had a heck of a time getting mine in.
Katie, I missed your entry about little David. As devastating as the news is, as long as the family remains positive David should pull through. I'll keep him in my prayers since it's so much harder being as young as he is to understand what is actually happening to his little self.
On the spacers note, I've only had one spacer placed and that was after I had been braced for a while so that was a cake walk. If you ask about my first month in braces, I hardly ate a solid bite of food. So for me, being braced was harder than my 1 spacer. I'm sure had I been stuck with spacers first, I would have felt just as miserable as I was when braced.
Upper and lower 1st premolars extracted
Uppers braced 4/6/07 & Lowers braced 4/20/07
ceramic brackets and rectangular arch wires
Est. term: 30-36 months
De-banded: 3/04/09 w/ LBR and U&L Essix
Well today is day 3 for my spacers and it is still really hard to eat anything hard or semi-hard. I managed meatloaf and mashed potatoes for dinner last night. I tried to eat a sandwich today with chicken and pesto but the bread was real crunchy and it cost me $12!!!! Oh, well I already paid for it and now I cant eat it.
I think that I can eat anything I want until I put it in my mouth to chew and then I am like OUCH!!! Well hopefully tomorrow will be more promising. Only 1 week 6 days left with these darn things in my mouth!
Yesterday we got more news about little David. His disease has already spread into his lungs and they did testing to see how far it has progressed which will give us a timeline on how much longer we have with him. My boyfriend had to stay until tomorrow for business and still does not know. I am trying to keep his mind focused on other things right now and I will tell him when we can sit down and be rational about it. I have a deep ache in my heart that I have never felt before. It takes a lot of strength not to sit and ponder about it every moment. I know he is not my son but I love him dearly and I hope that his guardian angels are by his side to keep him here for a happy and healthy life.
Same here as far as the spacers go. Actually, I can't really chew anything, so I've been sticking to the mushy stuff. Hope it gets better for you soon!
Keeping you, David and his family in my thoughts. *hug*
Wisdom teeth extracted: 11/09/07
Upper & lower arches braced, but only the 6 upper front teeth wired: 1/22/08
All 4 Bicuspids extracted: 1/26/08
Upper & lower fully wired: 2/6/08
Est. treatment time: 18 months
In-Ovation C brackets
De-braced: 2/11/10
Essix retainers both arches
) down and was called into the chair. The assistant explained to me that i was going to be getting spacers for my herbst and that about 6 months from now I will be braced! I got 8 total and one of them was real pesky. The assistant could not get it in, so she called the ortho over and he had to put some special sting in and told me to come back tomorrow on my lunch hour to get a normal spacer put in. 
But so far so good - other than my shock to the whole thing. But I'm slowly getting over it, I think. 
