Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 Hello all, I have not posted in quite some time here is the latest. Mark has been suffering with urinary frequency, and some incontinence. After seeing 2 urologists and just completing multiple tests on his bladder and kidneys a diagnosis of interstitial cystitis was given. This condition is an irritation of the bladder lining causing pain, frequency, and sometimes incontinence. 2 years ago he had constant diarrhea and was diagnosed with Lactose intolerance. So to sum it up now there are several of his favorite foods which he is supposed to eliminate!! He loves canned pasta, and choc cakes (snack like) He is on a soft diet still due to swallowing issues. He had a TEF and had a g tube for 11 years. Here we are at age 17 with all these diet, bladder and bowel concerns. It has been a royal pain. Now the urologist states after a cystoscope in OR that his testilces are NOT where they should be. He is VERY small in that area so we thought it was just related to CHARGE so he wants a second surgery to locate them and either bring them down or? He was supposed to have this done during another surgery at age 1 1/2. I just needed some feedback and to vent a little. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 Hi , It is great to see you! I'm sorry Mark is having more issues. That is very hard. Why in the world didn't they do the surgery when he was little like at 1 and 1/2 years as they said they would? It is a lot easier on a baby at that time because a teenager sure doesn't like that type of surgery. :-( I can see why you are venting. Also what will be done about the interstitial cystitis? Are some of the dietary restrictions due to lactose intolerance and some due to the interstitial cystitis? Kendra can not process the proteins in milk and is also on a milk free diet mostly. However she loves yogurt and I was sooo happy to recently find that our market started carrying soy yogurt and soy puddings (they come in chocolate). She really likes them. As for the canned pasta, are you thinking of Chef Boyardee or Franco American? Kendra also likes Franco American spaghetti and can have it once in a while. I have a listing of many snack kinds of foods that are both milk and wheat free in case you are interested. Maybe, just maybe, there could be some great substitutions for those great chocolate cakes. How are things with Mark's interpreter this year? Is it an intervenor or an interpreter? I hope things are going well at school. And how is your daughter? Mom to Kendra, 14, CHARGE, , 20 and Camille, 22 Southern California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 , Nice to hear from you. I would love your list of snack foods for the milk free. I was doing some research and found out that in persons that are lactose intolerant can have an increased intolerance to other foods. Are you supplementing Calcium? I also came across a treatment for IC which is really calcium, could this be where Marks problem stemmed from? Also Mark DID have that surgery supposedly when he was about 1 & 1/2 for the undescended testicles. What a mess. I have been on the picket line for 2 months now. The RN's went out on strike Nov 8th over overtime issues and we are still out. Not a good time for NO CHECK. Not that there is a good time for that. Sara is starting another semester at CMU this week. I am just tired of all these problems. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 , I hope this isn't too persoanl or embaressing for Mark for me to ask, but are his testes close above the penile area or are they all the way up near his abdomen? I have a friend whose son had to have the surgery because they were near his abdomen and the docs say these can become cancerous. I was worried about my own " normal, non-CHARGE " son and took him to a uroligist at age 2 because I couldn't find his in the scrotum and they were just above the penile area. They now are retractile and I still look for them every time he's naked in the bath or hot tub. I still worry cuz sometimes they are there and sometimes they are not there. They are still extremely small ( guess in comparison to all I have seen...I do in home daycare so I have jsut noticed that 's are the smallest ones I've ever seen) foley Mom to jackson 5, (CHARGEr in heaven) and Jillian 2 cHaRGE What a rut we are in.... > Hello all, > I have not posted in quite some time here is the latest. Mark has been > suffering with urinary frequency, and some incontinence. After seeing 2 > urologists and just completing multiple tests on his bladder and kidneys a > diagnosis of interstitial cystitis was given. This condition is an irritation > of the bladder lining causing pain, frequency, and sometimes incontinence. 2 > years ago he had constant diarrhea and was diagnosed with Lactose > intolerance. So to sum it up now there are several of his favorite foods > which he is supposed to eliminate!! He loves canned pasta, and choc cakes > (snack like) He is on a soft diet still due to swallowing issues. He had a > TEF and had a g tube for 11 years. Here we are at age 17 with all these diet, > bladder and bowel concerns. It has been a royal pain. Now the urologist > states after a cystoscope in OR that his testilces are NOT where they should > be. He is VERY small in that area so we thought it was just related to CHARGE > so he wants a second surgery to locate them and either bring them down or? He > was supposed to have this done during another surgery at age 1 1/2. I just > needed some feedback and to vent a little. > > > " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 , I am sorry that after all this time these things keep popping up with Mark. That is so scary, just when you think you've gotten into your "routine" of life, something new pops up...gotta love CHARGE... I really don't have any helpful advice for you, you're a lot farther into and more wiser about the game than I am, we are thinking of you though and hoping for some easy resolutions or treatments for Mark's issues. Hugs, Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/kawfolksICQ #1426476 What a rut we are in.... Hello all, I have not posted in quite some time here is the latest. Mark has been suffering with urinary frequency, and some incontinence. After seeing 2 urologists and just completing multiple tests on his bladder and kidneys a diagnosis of interstitial cystitis was given. This condition is an irritation of the bladder lining causing pain, frequency, and sometimes incontinence. 2 years ago he had constant diarrhea and was diagnosed with Lactose intolerance. So to sum it up now there are several of his favorite foods which he is supposed to eliminate!! He loves canned pasta, and choc cakes (snack like) He is on a soft diet still due to swallowing issues. He had a TEF and had a g tube for 11 years. Here we are at age 17 with all these diet, bladder and bowel concerns. It has been a royal pain. Now the urologist states after a cystoscope in OR that his testilces are NOT where they should be. He is VERY small in that area so we thought it was just related to CHARGE so he wants a second surgery to locate them and either bring them down or? He was supposed to have this done during another surgery at age 1 1/2. I just needed some feedback and to vent a little. "5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
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