Guest guest Posted November 13, 2001 Report Share Posted November 13, 2001 , Hello. Glad to meet you and hear about your daughter. She sounds like a doll. I have 2 CHARGEr's (Tryny 7 and Zak 2) and would be happy to help you with anything. Both of my son's have CHARGE syndrome but also have a lot of other medical problems (especially Tryny who has a total of 4 different syndromes, epilepsy, apnea and other problems) and Zak also has CP. So if I can ever be of any help with questions or just to talk, don't hesitate to write. I never mind sharing my knowledge and I'm always happy to help. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2001 Report Share Posted November 13, 2001 & Janice-- Welcome! I hope you will find answers to many of your questions and lots of support here on the list. has been through so much already that I'm sure there were times that felt overwhelming. We've all " been there, done that " in one way or another even if our exact experiences are different. My daughter, Aubrie, did not have many of the complications that you are dealing with so I will leave the advice on all that to the other " experts " . Just wanted to welcome you to CHARGEland and commend you having survived what I am sure has been a difficult 13 months! It sounds like you are all doing very well! Michele w mom to Aubrie (CHaRgE) almost 4 yrs and 10 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2001 Report Share Posted November 13, 2001 , Janice & , Welcome to CHARGEland, has certainly been through a lot, the first year is so crazy, it seems like it's just one thing after another. I'm so glad you found the list and can get some ideas, help & support whenever you need it. It seems as though from your description of 's surgeries that they are doing multiple procedures at one time. This is my best advice I can give regarding airway issues, intubation/extubation, etc. Insist on them doing as much as possible while she is out, we do everything from hearing aid molds to at one point having the nurses clip her toenails while she was out (she's over it now and we can do it while she's awake). Starting with her next surgery, she will also have dental cleanings/etc done while she is out. Dental care is very important for Kennedy because of her heart surgery and patches. We were told this right from day one after her heart surgery. I see you didn't mention anything about 's heart, but you still may want to look into having her seen by a dentist while she's going to be out at some point as well. We've also had the ophthamology team down while she was out to get a really good look into her eyes at her colobomas, etc as well. We had one nasty airway incident with an extubation when she was 6 months old but knock wood, she's been good since. I don't really have any other advice about the trachealmalacia issues but to try and keep the number of surgeries as low as you possibly can by combining them whenever possible. It is amazing how well these kids can do after going through SO much, it sounds like is a typical take it on the chin CHARGEr like so many of them. Has she shown you her stubborn side yet??? Take care and again, welcome Mom to Kennedy 3.5yr old CHARGEr, 12, 10, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 (no subject) Hello, my name is Hiltner my wife Janice and I are parents of a 13 month old beautiful CHARGE girl named . This is our first time on the CHARGE list so please allow me to give you a brief history. has colobomas (into the retina and optic nerve),possible choanal stennosis,and moderate to severe hearing loss(bone and nerve). She also was born with a bilateral cleft lip and palate, and has microcephaly.On DEC.22nd 2000 underwent surgery which included P.T. tubes,Nissen fundiplication, G-tube,and a glossopexy (where an ENT sutures the tongue to the lower lip to correct an obstructed airway). also had her lip repair on Feb. 14th 2001. It's been a long 13 months but we are proud to say that is doing remarkably well considering everything she has gone through! On Monday Nov. 19th is scheduled for palate repair surgery and a possible glossopexy take down . We are quite concerned about 's airway,trachealmalacia, intubation -extubation,apneic spells, as well as recovery time. We would appreciate any advice we can get. We would love to hear from you! THANKS! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2001 Report Share Posted November 13, 2001 Welcome , Janice and ! Welcome to this mailing list! I am a 23 year old CHARGEr. There are two other charge adults on this list (Belinda - in Australia and Chip - in California) Feel free to ask us anything. There is no such thing as a stupid question and we are all happy to answer any questions you may have! Hugs and welcome Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2001 Report Share Posted November 14, 2001 Jan, I hope is feeling better today...teething is rotten for any child and it must be difficult with the glossopexy from what you've described. Give her a hug from Kennedy! Weir Mom to Kennedy 3.5yr old CHARGEr, 12, 10, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/kawfolks ICQ #1426476 " When the tide of life turns against you and the current upsets your boat, don't waste your tears on what might have been, just turn on your back and float. " -Anonymous (no subject) Hello, it was absolutely wonderful hearing from so many of you.We really feel like we are meeting a great family, CHARGEland.We will do our best to keep in-touch with you all. It is 3am here in MN and it's been a19hr. day. It's been one of those teething days' today.She's getting her lower central incisor's and with the glossopexy intact, makes it very difficult to give her comfort in that area.BYE, bless all--Jan mom to ,CHARGEr; is our 1st child, and I have been married for almost 15 yrs.The pregnancy was very much a SURPRISE, more on that some other time-miracles do happen---- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2001 Report Share Posted November 14, 2001 , Instead of ordering another for your PCP, why don't you just let them copy it? That's what we did with each of Kennedy's specialists, they each photocopied their section, or whatever was of interest to them. Also, regarding the lingo in the manual, I think a lot of the parents who've been around the hospitals a lot have just picked up on a lot of the medical terminology. That said, I realize everyone doesn't know all of the terms and may be confused with some of it. I URGE you to write in, ask questions of the list about anything you don't understand. This is a good point for any new families here on the list as well, we tend to use a lot of abbreviations, etc here on the list and I would hate for someone not to know what they stand for or be wondering about something. Please please, ask about anything, everyone is more than happy to share what they know. I am glad you found the manual useful. I think it's a fantastic resource! Hugs, Weir Mom to Kennedy 3.5yr old CHARGEr, 12, 10, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/kawfolks ICQ #1426476 " When the tide of life turns against you and the current upsets your boat, don't waste your tears on what might have been, just turn on your back and float. " -Anonymous Re: (no subject) Hi and Janice! I'm new to the list as well. I've only been on for a couple of weeks, but I'm really starting to get to know a few of the families here. Everyone is very friendly, supportive and helpful. Our little girl, , turned 2 at the end of Oct. Sounds like she has a lot in common with your little girl. Starting from the top-- also had a bilateral cleft lip and palate, colobomas in both eyes (but is blind in only one), her left eye is micropthalmic, she has severe hearing loss in her left ear, a double aortic arch, an ASD, a herniated umbilicus, and her feet were dramatically turned inward when she was born. At four months she had her first surgery--a lip adhesion, g-tube, partial Nissan, and tubes put in her ears. Then at 8 months there was the surgery to repair her double aortic arch. This is a heart condition, but did not mean open heart surgery. Our pediatric surgeon did such a lovely job that she was crawling the next day, and home that afternoon! This totally stopped our need for any Zantac, Reglan, etc. She stopped gagging and spitting up. She stopped crying when we'd feed her. And, best yet, we were able to start really feeding her by mouth!! Her final surgery, at 11 months was to do a combined lip/palate repair. The palate repair surgery was probably the hardest for us. We really had a hard time keeping her sats up afterward, and then, of course, there is the 3 weeks with her little arms in splints so she can't reach her mouth with her fingers. That was NOT easy for any of us. Has your surgeon told you about MEDERMA? It costs a lot of money ($20 a tube here in Denver), but it works very well to fade scars. Our plastic surgeon (who is an ARTIST) recommends it over vitamin E or any other preparation. We've been using the same tube for over a year, so that's a little more cost effective. Since then, her ASD has closed on it's own. Her feet straightened out on their own as our orthopedist believed they would, she is off the g-tube and eats/drinks entirely by mouth (when the " experts " told us she'd be at least 5-6 before that would happen!). She also had a schleral shell made for her and looks amazingly symmetrical. She's walking, talking, keeps up with kids her own age, and is WAY ahead of me most of the time, like a 2 year old ought to be. She's also a very happy and loving child who adores being around people. Right now we're interested in why isn't growing. She's below the curve, now. Hasn't grown in 6 months. We see an endocrynologist on Friday, and I suspect (from the help I've gotten here) that she has a growth hormone deficiency. The Wiers suggested that I write away for the manual that the CHARGE Foundation publishes for parents. I did so and received it a couple of days ago. While I find it interesting I have two criticisms: first, they shouldn't call it, " For Parents, " but " For Parents to Show Their Kid's Doctors. " Even the fact sheets that are specifically for parents in it are very technical in language and I think could be cumbersome for many parents. The second thing is that I wonder if their statistics are truly representative of the CHARGE population as a whole, or just the most severe (and most often studied) patients. For example, the manual says that growth hormone deficiency is " rare " in kids with CHARGE, but I've heard tons of stories on this list about this problem. That said, I still think it's well worth the $20! I'm going to order one for our PCP as well. I hope all goes well for ! Brighton Mom to Tessa (7), Emma (5) and (2--CHARGE) Wife to Littleton, CO __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2001 Report Share Posted November 16, 2001 Thanks, n, that's a really good point. One less thing for me to have to think about: making sure she gets the updates. I'll take care of it soon! --- n Norbury wrote: > , > > Another reason to buy the Manual if someone wants > the whole thing is > that they will get notified when we have an update. > Do need to remember > to send in the form near the front of the Manual. > > n > > Brighton wrote: > > > Hi ! > > > > I thought I'd copy off the sections needed for > > specialists, like the endocrynologist we see > tomorrow, > > but our PCP wants the whole thing, and that's an > awful > > lot of copying. I thought it'd be easier for me > just > > to order another for her. > > > -- > n A Norbury, Executive Director > CHARGE Syndrome Foundation, Inc. > 2004 Parkade Blvd, Columbia MO 65202 USA > phone/fax; (families only) > mailto:mnorbury@... or > mailto:marion@... > web site: http://chargesyndrome.org > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2001 Report Share Posted November 18, 2001 Josh is 18 months. C=7th cranial nerve palsy which involves swallowing problems (requiring Nissen and g-tube placement) and hearing loss, No colobomas; H=PDA which has closed; A=left nasal atresia which was not completed blocked and didn't require surgery. Caused problems as newborn due to desaturation when first attempt at sucking on bottle; R=delayed growth and development but no mental retardation; G=small penis and one undescended testes;no urinary or renal problems; E=malformed ears with no ear lobes; mixed loss. Josh is crawling everywhere and pulling up on anything and everything. Sometimes he attempts to walk which is unsuccessful at this time. But what a difference a year makes!!!! Kriste (Josh's mom) is 29 years old and the best mom in the world. She and her husband had a child 3 years ago, , which was born with some similar Charge characteristics but never diagnosed as Charge. Josh's endo has said that Kriste is probably a Charger---C=bell's palsy and hearing loss; H=PDA which did require surgery for repair; R=delayed growth and development; E=malformed ears and mixed hearing loss. There are other characteristics that are listed such as third nipple, gait sequence, etc. Kriste is doing great and has a very supportive and understanding husband. She did have difficulty with social issues as a teenagers but had supportive friends, some that are still friends today. She isn't able to work at this time due to the demands of Josh. Iris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2001 Report Share Posted November 27, 2001 Jan, You got that right! Kennedy has NEVER and I mean NEVER napped in her life. BUT, she has slept through the night so I've survived. As long as I get my sleep at night I can function! Jan, Dr. Blake has been studying CHARGE and working with people who have CHARGE for quite some time. She has been published many times with articles about CHARGE. The one I quoted from was called " CHARGE Association: An Update and Review for the Primary Pediatrician " . A great article covering CHARGE. It's from the March 1998 issue of Clinical Pediatrics. We are fortunate that Dr. Blake works here in the Maritimes at our Children's hospital. She follows Kennedy and a variety of other CHARGErs and I just feel very lucky to be involved with her. She's a fantastic person, extremely approachable (not doctor-ish at all! RE: Chloral, etc We don't generally have to sedate Kennedy for much anymore unless it is an actual surgery for something where she will get anesthetia. Back in the days we tried to do the sedating for hearing tests, etc, we didn't have much luck. I forget now what they used for her CT scan at 2 months. Weir Mom to Kennedy 3.5yr old CHARGEr, 12, 10, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/kawfolks ICQ #1426476 " When the tide of life turns against you and the current upsets your boat, don't waste your tears on what might have been, just turn on your back and float. " -Anonymous (no subject) , just curious, is Kennedy one of those non stop CHARGEr's? is like an energizer bunny, she really doesn't know when to stop! She takes very few naps during the day never really has. We do the myofascial releases, which does seem to help at bedtime. Thankfully has responded well to this soft touch therapy. It saved my sanity (somewhat)!! Although we've only been involved with this form of therapy since mid September. We have never heard of DR. Blake? The only thing we know about sedations/CHARGE is what we found in the manual, which wasn't much. If Chloral Hydrate is like candy for Kennedy, have you found something that does work for her? Jan mom to (13.5 mo) CHARGEr wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2001 Report Share Posted November 30, 2001 Hello All, I know I have been somewhat of a shadow in the CHARGE list. I am more of an CHARGE_ Angel lister. But it mostly due to the overwhelming emails of all your beautiful children you have and I have absolutely no experience with that because I lost my little CHARGE Angel. So I can only imagine the phenomenal strength and courage you all have. But I do have good news. We are expecting! July 3rd! I have recently miscarried and am a bit scared but I think this one will be fine. But I just wanted to pop in and say hello to you all. Take care. Hugs Kris - Mommy to (Austin - Aug 23, 1999 - Sept 22, 1999 CHARGE) - 16, ie - 14, - 13, New baby due July 3rd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2001 Report Share Posted November 30, 2001 Kris, Congratulations on your pregnancy. Take care of yourself Jack's due date was 4th July but he wasn't born until the 10th. Hugs. Elaine mum to Elise (9 yrs) & Jack (4 yrs) CHaRGE Dumfries, Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2001 Report Share Posted November 30, 2001 , When Aari had his palate repair that's when the nose started to run constanly also. I figure that it had always been there just 'going out' through his palate. When he had his bony atresia fixed his nose stopped running, but three years later when it restenosed it started running again. As a matter of fact it was the runny nose that sent me back to the ENT to see what was up, the doc thought I was nuts to think the runny nose was from his restenosing, but it turned out I was right. After they fixed it it stopped again and other than colds it's been fine now for four years. Casey Mom to Dawn 22 HH, Ken 12 ADHD, 9 CHARGE ICQ 728514 AIM ZeeCasey CHARGE Web Page: http://www.geocities.com/Heartland/1220 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2001 Report Share Posted November 30, 2001 , I think the choanal stenosis could definitely play a part in the runny nose, maybe things ran down a different way when the palate was open, and now that it's closed, the secretions are finding another route....out the nose.... No real helpful answers here, just buy a lot of kleenex...and if her nose gets irritated from the wiping, we use prevex cream on Kennedy's nose (and now on the back of her hands from wiping away the stuff) Weir Mom to Kennedy 3.5yr old CHARGEr, 12, 10, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/kawfolks ICQ #1426476 " When the tide of life turns against you and the current upsets your boat, don't waste your tears on what might have been, just turn on your back and float. " -Anonymous (no subject) Hi all Since s palate repair on Nov.19th she has had runny nose, we especially noticed it after we got back home. At first we thought she had picked up a cold at the hospital, but as time went by we noticed she did not have any other symptoms. We're wondering if it had anything to do with, having her palate closed and the fact that she may have unilateral choana stenosis?? Any one have any thoughts? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2001 Report Share Posted November 30, 2001 Kris, Good luck and be well!! Audrey Dwyer, Mom to -10, Meredith-8(CHARGE), -7, and wife to Bill. Re: (no subject) > Hello All, > > I know I have been somewhat of a shadow in the CHARGE list. I am more of an > CHARGE_ Angel lister. But it mostly due to the overwhelming emails of all > your beautiful children you have and I have absolutely no experience with > that because I lost my little CHARGE Angel. So I can only imagine the > phenomenal strength and courage you all have. But I do have good news. We > are expecting! July 3rd! I have recently miscarried and am a bit scared but > I think this one will be fine. But I just wanted to pop in and say hello to > you all. Take care. > > Hugs > Kris - Mommy to (Austin - Aug 23, 1999 - Sept 22, 1999 CHARGE) - 16, > ie - 14, - 13, New baby due July 3rd > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2001 Report Share Posted December 3, 2001 Good luck with your appt too! Michele (no subject) > > > Michele, > Good luck to you on Aubrey's appts.Hope all goes well !! Enjoy a > little get away from the daily grind...... > We have a follow up appt. with 's craniofacial/plastic surgeon > on Monday. We are hoping for a good report on 's palate (she really > misses her oral stim.) > > Jan mom to (13.5 mo) CHARGEr > wife to > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2004 Report Share Posted October 18, 2004 The dual (or the Saunders model with zeroing feature) digital incllinometer is the AMA standard. The nice thing is that for lumbar you have the option of attaining a true " curve angle " with this tool which sells for about $300. I find the inter and intra tester reliability quite good, certainly better than gonio or visual guesstimating. (no subject) How does one objetively document cervical and lumbar range of motion? 1. Flexion Extension Rotation Sidebending Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2009 Report Share Posted August 8, 2009 Tami: I understand your concerns. I will share some thoughts. I have been told that one is no longer contagious once their immune system is strongly fighting a pathogen. This is mostly referring to acute infections. Basically, docs tell me that once you have a cold, you are no longer contagious once you start to feel better, even though you have symptoms left. Not sure if I believe this. My other thoughts are about things like Bartonella. Bartonella is said to be so contagious that if you have a family member with it, everyone is going to get it. Not all doctors will say this, but many doctors who dedicate their practice to specializing in Bartonella do. They say it's in feces, in flea feces, so it's in dust. Cumanda is often used for Bartonella. Keep in mind that whole families are testing positive for Lyme, Mycoplasma, Bartonella, even though many family members didn't feel they were sick. As a matter of fact, I heard some autism specialists say that the moms were testing positive for Lyme even though they felt they were not ill. So, being a carrier is well, kind of expected, if your children are ill. So, basically, the pathogens and toxins our children have, well, likely came from us. Not to alarm you, many just have one child with autism. All my children had symptoms of some sort, but are all now indistinguishable from peers. (I say that to give you hope). But then we do know that Herpes is contagious via the blisters, which only appear when the immune system is fighting it. So, this leaves a quandry. I can not say or even give a good educated guess as to what those bumps would be doing as far as contagiousness. But, I feel exposure may happen with at least some pathogen types no matter what. At my house, everyone gets treated for all pathogen types at the same time. This could be why we have been successful are ridding symptoms. I have heard that some doctors feel the whole family has to be treated. For example, since many pathogens are transferred via sex, many feel that both husband and wife have to be treated. So, once again, it really is a family thing. My son does get white bumps when treating Bartonella. He gets them on his back. They don't pop, so I have not thought about them being contagious, but surely the contents of them is some sort of infection or waste product his body is trying to rid through the skin. He has been on Bartonella treatment about a year, and they do get worse the more we try to kill Bartonella and go away when he stops treatment. He is the only one who gets those bumps. He also has the stretch-mark rash. I have Bartonella, but never got any of those rashes. I get the forehead rash, which is tiny red bumps that can easily be covered with make-up. Lucky me. So, here are my thoughts. I guess I would treat. But the decision you must make for your family has to be yours. I always pray and go with my gut. I guess many refer to it also as mommy instinct. Love and prayers, Heidi N Heidi, This is alittle away from this topic but hope you have some insight!! I am wanting to try Cumanda, Revestrol, Samento....some of the microbials that you mention but am concerned about a couple of things. We have tried Cumanda with him and saw some great things but about day 16 or so he got white bumps all over his mouth, tongue, lips and they hurt him greatly. I was ready to push through this but I am pregnant with our 3rd child due in Nov. and got scared of what might be coming out of him could be measles, rubella, etc and something that I may get and harm the baby. I have read quite abit about how you have to be careful when pregnant and what viruses my come out when treating. I hate to stop treating this as we saw good things but also have to thank of the baby. I am also so frustrated as I obviously wont be able to do this treatment in the near future if viruses are coming out as we are not vaccinating the baby. Do you know if herbs likeI listed bring the viruses out where if you use Valtrex it will kill them off and my concerns would be nill. I hope this makes sense and any help would be appreciated!Tami Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2012 Report Share Posted June 9, 2012 http://exoticholidays.info/wp-admin/xi169ldf.php 6/9/2012 10:07:11 AM Quote Link to comment Share on other sites More sharing options...
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