View Full Version : My 9 year old daughter is having some symptoms.
08-13-2009, 02:43 AM
I am so thankful to have this avenue to ask questions about IC. I was diagnosed two years ago and often read the information here to learn about how to handle the diagnosis. I am pretty stable now with medications and the diet, but my 9 year old daughter has started having symptoms. She is going to the restroom about every 45 minutes to an hour during the day, more in the morning and right before bed. She also says she is dribbling urine after she uses the restroom. Her pediatrician tested her for an infection. He found blood, but no other signs of infection. He said he will culture it out to be sure, and then probably refer her on to a pediatric urologist. When I visited my own urologist, I told him what was going on. He suggested putting her on the diet, giving her Benedryl before bed, and getting some ph strips to measure the acidity of her urine.
Are the ph strips an accurate measure? Do they ever put children on Elmiron? Does Benedryl help with mast cells? I don't want to treat the symptoms without helping to cure the problem. I realize there are other possiblities, such as structural problems, but the pediatrician said that with the blood in the urine, cystitis is a good possiblity.
Does anyone have any other thoughts? Am I missing anything?
Thanks in advance. It's so good to have a place to go with people who understand.
Wow, do our daughters ever sound similar! I have a five year old daughter was just recently diagnosed with IC by Dr. C. Lowell Parsons at UCSD. She urinates more than normal, complains of stomach pain and has post void dribbling. I took her down to UCSF and they diagnosed her with vaginal voiding. I knew it was more than that so I took her to see Dr. Parsons. He diagnosed her with mild IC and put her on 50 mgs. of Elmirion. He told me that children respond typically respond very well and usually very fast to Elmiron. He told me I might notice an improvement in as little as a month. If you run into any problems with getting your daughter help, I would highly recommend Dr. Parsons. The knowledge he spills forth is amazing. He was very optimistic about treating her. We drove over 10 hours to see him and I'm so grateful that we did. I'm now looking for a local urologist to work with him. There is another gal on here who's daughter is taking Cystoprotek very succesfully. If you have any further questions, please let me know. I learned quite a bit about IC and children from Dr. Parsons and would love to share what I was told...
08-14-2009, 01:18 PM
Where is UCSF?
California, San Francisco?
Where is Dr. Parsons located?
I would love to hear more of what you learned.
08-14-2009, 05:03 PM
hi there! i am so sorry that you and even more so your daughter are having to go though this!!!!! the only thing worse and scarier than going through it ourselves, is having to watch our precious baby go through it!!!! every time she cried with symptoms i did too!!! why couldn't it be JUST me!!!!!! just like we had to tell ourselves that there is life and hope after diagnoses, we have to tell ourselves that for our daughters too!!!!
my daughter brenna was diagnosed with ic a few months back. she was having classic symptoms and of course neg cultures. she did have red and white cells in her urine, just no bacteria. her file was sent to the pediatric drs at rochester where she was diagnosed. they said that she will have to have symptoms for a year before they will see her. so i took her to my uro who is wonderful!! she said the same thing that was mentioned...that children usually respond very well and very fast to treatment and that because of this she would never get to where i was. only time will tell but so far she has respond WONDERFULLY to the cystoprotek!!!!!! and i praise God for it, though not as often as i should!!!! i giver her one morning and night. i've decided for now not to change her diet at all. i don't want her to have to give up any part of childhood. and so far we haven't had to as she has responded so well to the cystoprotek. she had one bad day about a month in and that is the last time she has complained of any symptoms!!! it's just too wonderful for me to even comprehend!!! if you have any questions or want to talk feel free to pm me!!! please give your daughter gentle hugs for me and from brenna too!!!! :)
08-14-2009, 05:15 PM
(ktmeak7),I am so sorry to see that you have IC and that your daughter may have it also. Bless her heart. I'm glad you found this website. I hope both of you respond to treatment.
Hang In There
UCSF is in San Francisco and UCSD is San Diego. Her diagnosing Dr., Dr. Parsons is one of the very best IC doctors in the country. One of the top three to be exact. He is worth his weight in gold! I had no luck with a local urologist or UCSF for her. It was refreshing to walk in a doctors office and be taken seriously for once. I guess I say that partially from my own experience and feeling like I've had to fight with doctors to help me with my IC in years past. He wants us to come back in 4 months to evalute her progress. After that he said we could go to yearly visits with phone calls in between. I asked him so many questions, I'm trying to remember everything here...I was so concerned what her quality of life would be like in the future. He diagnosed her as a mild case at this point and felt that as long as her case was taken care of now that she would never be a serious IC case. She's only been having symptoms for 7 months. He said that it's when you let IC go on for a number of years that it becomes harder to treat. He's a big believer in controlling the progression of IC. He did mention that he's seeing more children present with symptoms of IC than in years past. He said that often symptoms first present between ages 4-7 in kids. A large number will respond very well and very fast to Elmiron. I believe I was told that after 6 months on the medication that many can be tapered of the drug without a reocurrence of symptoms until often times puberty. Then the Elmiron would be started again to once again gain control of symptoms. I got the impression that children respond better to Elmiron overall. I would like to clarify this with him though. He just seemed to feel that she would most likely respond well to this treatment plan. I have so many more questions I want to ask him on her next visit. He even was asking me about my IC and was giving me a few tips. He really encouraged me to go back on the Elmiron and give it much longer to work. I also get the impression that he feels that more than 6 months is needed before one decides it doesn't work. I didn't ask him to elaborate further, so please no one quote me on that.
I still freak out and worry about my daughter, but I also have a deep comfort knowing that Dr. Parsons is my daughters urologist now. He was so optimistic about treating her and really felt that I had every reason to believe that she would have a great life. I hope that this is encouraging to you. If there's anything else I can help with, please let me know. I felt so discouraged and very scared before getting her help. Honestly, I still feel scared sometimes, but I feel so much more hope now for her:)
08-15-2009, 04:31 PM
Thanks so much for your responses! I really appreciate them.
Dr. Parsons sounds wonderful, but we live in Illinois. That would be quite a ways to go. I suppose it wouldn't be completely out of the question if we have no luck at all around here, but we'll probably try here first. Someone mentioned that there are 3 top IC docs. Who are the other 2 and where are they located?
It did take me quite awhile to respond to Elmiron, but it definitely helped eventually. I was just barely beginning to see a difference after 6 months. After a year I remember looking back and realizing that there had been some slow improvement. It's just very gradual, but definitely better than nothing! It has been about 2 1/4 years now. I still have to watch the diet, but not as strictly as I did at first. I can get away with small amounts of some of the things we are supposed to avoid.
I am thankful to hear that children respond faster. I had not heard that before, so you are giving me some hope.
What is Cystoprotek? Is it similar to Elmiron? I am assuming it is a prescription medication. Is that correct?
Thanks again for your posts!
Dr. Moldwin on the east coast would I'm sure be one of the top three. As for the third, I'm not 100% sure. I spoke with Jill here on the ICN one day and she told me that Dr. Parsons was one of the top three. I hadn't realized that until she told me. I'm sure you are right that you could find a good doctor closer. You can also call the ICA and ask them for a list of doctors who treat children. They asked what area I lived in and sent me a list of doctors around my area. Unfortunately there weren't too many. There might have been a few listed in the midwest area. I'll try to dig around for it and see if it might be of any help to you. I didn't want to jump from doctor to doctor trying to convince them that my daughter needed help. Or atleast, that was my fear anyway. That's why I personally decided to go to someone I knew would probably help her if she needed it. I just didn't want to mess around too long. It was hell for me to try to find a doctor who was willing to treat me when I developed symptoms 6 years ago.
The Cystoprotek is not a prescripton drug. You can purchase it here on the ICN, Amazon, and directly from the manufacturer. It is a glucosamine, rutin, and quercetin supplement. Just do a google search on it or you can also find more information here on this website. Many have found this supplement helpful. If you google Cystoprotek and go straight to the site it answers many questions. It even states that is safe and gentle enough for children to take.
I hope you find some answers soon:) I wish there had been more information out there when I was a child. I had my first symptoms of IC at around age 11. I saw so many different doctors and was told that it was all in my head. I wish they had known more back then and had more options. Luckily, my IC went away after two years and didn't return until many many years later. I know IC research has a long way to go, but atleast our daughters have more options then they did even just 10 years ago. Like I said earlier, I still feel scared, but I find great comfort in knowing that there's a very solid chance that our children will respond well to treatment:) Please keep in touch a let us know how she's doing....I'm sure that once she receives treament she will be feeling better:)
08-16-2009, 02:13 AM
amazon has the best prices that i have found for the cystoprotek. they have subscribe and save that brings the price down even more. and you just choose how often you want a shipment. in the beginning i had to keep an eye on shipments and a few times had to order right from the cystoprotek company, because amazon was back ordered. but i haven't had any problems in a year or so, so they must have worked out the kinks. i am really excited to hear of your daughter responding to this, or whichever treatment you choose!!!!!!
09-02-2009, 05:43 AM
My 10 yr old son is having symptoms. I have had IC for the last 8yrs and am managing, but when I see him struggling I feel like screaming. I am so distraught over this and I'm sure it is making my own body react adversely. After reading the posts here I am a little bit more hopeful. I've ordered some Cystoprotek for him (I've never taken it) but am beginning to wonder if I should even bother with the Cystoprotek or just take him to Dr. Parsons. But, I don't know if Elmiron is the thing to do either...it seems like such a harsh medication on such a little body...do we know what the long term effects of this medication are? I feel so helpless and scared for my sweet boy.
I'm so sorry to hear your son is dealing with bladder issue too:( I see that you are also located in California so personally I would recommend you might see Dr. Parsons if you can manage it. He is an adult urologist, but will see children. UCSD registration will tell you he only sees adults, but if you talk to his office they will okay it. I'm trying to find a local urologist now that will be willing to work with Parsons. I understand you hate the idea of medication, so if Elmiron scares you, I would not go see Dr. Parsons. He's a big believer in Elmiron. I don't like my daughter taking medication, but letting the IC progress and disrupt her life was far more scary for me personally. As we've all heard, the longer IC is left untreated the more difficult it can become to manage. My daughter is on a 50 mg dose twice a day. So I guess the would be about 1/3 of the FDA recommended daily dose for adults. I don't think there has been any long term ill effects from Elmiron thus far that I've heard off. Also just because he would be put on Elmiron initially doesn't mean he would definitely take it forever. He mentioned to me that if my daughter was asymptomatic for a good 4-5 months than he would try to taper her off the drug to see how she did. He is highly optomistic about treating his patients and getting them better. I left feeling more reassured and happy that he was going to over see her care. He is one of the very best in the country and has a high success rate so if you can see him I would HIGHLY recommend it! I've read a few times now that he has over 75 children under his care. I just can 't say it enough! Sorry if I'm being annoying about it, I guess I just feel so grateful to him so far....I wish you luck in whatever route you choose. Please keep us updated if you can:)
I did want to say one more thing...I know you read about a lot of individuals on here who have had adverse side effects with Elmiron. The incidence is actually not that high though. Dr. Parsons said my daughter probably would have no adverse side effects and so far he's been right. Just wanted to add that. I'm sure anobgobeloba could give more info on the Cystoprotek. Truly, I hope you find good success in whatever route you choose. I'm just touting this one because it's the only road I've walked down so far....:)
09-02-2009, 09:17 AM
Where in IL do you live? I live in the Chicago suburbs and have been hearing good things about a Dr Michael Noone. He is also on a list that I received from the ICA, which means he must stay current with IC conferences, etc.
I see a Dr at Northwestern Hosp. downtown Chicago (also good), but I am considering switching to him as he would be a 20 min drive vs. 1 hr+. There are more Drs in IL on that list depending on where you live. I have the list if you are interested I could give you names in your area.
Good luck, my heart and prayers go out to you and your daughter!!!
09-02-2009, 09:23 AM
Thank you JVR for your reply...I really appreciate it. I will let you know what I decide. So sorry we both have to deal with such a terrible situation...but so glad you are feeling optimistic, it gives me hope.
09-02-2009, 09:28 AM
Do you now or have you at anytime modified your daughter's diet?
Yes, I have changed my daughters diet. Dr. Parsons actually told me not to get to wrapped up into the diet because he felt that we may start to notice a difference with the Elmiron in as little as a month. It was hard for me though to hear her complain of stomachaches, etc.. I knew I might be able to help her find relief sooner so I opted to change her diet. It was tough on her at first, but after a couple of weeks she has become more used to it. I've actually been testing some generally not okay foods this past week and so far I've heard no complaints. I called his office today to ask a few questions and spoke to his nurse. She said that usually the pain goes first followed by frequency and urgency. She also mentioned that you can expect 4-6 weeks of healing time with the Elmiron for every year you've had IC. I never had heard that before....Anyway, you might find the diet helps him. I would highly recommend trying that too. For my daughter, it seemed like after about a week I noticed that it seemed to be helping.
I totally understand how you feel in regards to feeling helpless. I fell into sort of a depression over this. None of us want to see our babies suffer with this condition. We all know how difficult it is ourselves sometimes. I honestly still feel scared sometimes. One of the few things that keeps me more positive is the trust I feel for her doctor now. He's got this real confidence in his ability to treat his patients. I know it sounds weird, but he almost made is sound like it would be no big deal to treat my daughters symptoms...and I guess after treating over 7000 IC patients, he does have the experience to back his knowledge up. I know I must sound like I'm getting paid by Dr. Parsons to say all these wonderful things about him...but, I just want you to know that there are people out there who will be willing to help your son and that there is hope!
09-03-2009, 11:36 AM
Thanks again for all your responses.
Tina B., I too was initially pretty upset to think that my daughter might have to go through this, but my husband always knows what to say to calm me down. Did I mention I have a wonderful husband?!? He always reminds me that first of all, we don't know that she has IC. We need to try to stay calm, find a doctor that knows what he/she is doing, and find out what the problem really is first. If it is IC, I am thankful that I actually know what it is, and my experience will actually be of help to someone. I don't have to try to figure out the whole diet thing by "experimenting" on her. I can give her some pretty solid leads on what to avoid by my experience. He is such a blessing to me!
I made her stay on the diet about 4 days and she felt better. Then, I realized that I really don't want to mask the symptoms when the doctor sees her, so I am letting her eat what she wants until she sees the doctor. The interesting thing is that she realized very quickly that chocolate really hurts. She is avoiding that on her own without any prompting from me. (This does make me think it really is IC, but I keep hoping I'm wrong anyway! I guess a little denial until I really know for sure doesn't hurt anyone.)
We have an appointment scheduled to see a pediatric urologist in 1 more week. (The appointment date was changed from before.) Anyway, she's doing O.K. until we can see him, and I am glad to see her trying to help herself.
Is there anything I am missing? Should I be thinking about anything else before I take her to see the doctor? Is there anything we should do before we go? I wish I knew if there was anything we could do ahead that would help him understand what was really going on? Does anyone do voiding charts or anything? Does that help the urologist?
In a packet I was mailed before her appointment, it had a 3 day voiding journal that he wanted completed before her saw her. Perhaps, that could be beneficial for the doctor for you to show him/her from the get go. I'm also meeting with a pediatric urologist locally next week. I'm really hoping that this doctor will be willing to work long distance with Parsons. I haven't had much luck myself with the urologists in my area for myself, so I'm really crossing my fingers with this one. I don't know what all we can do to prepare except just really explain what symptoms they are having and what makes it worse, better, etc. If anyone has better advice, I'd love to hear it myself:) Let us know how her appointment goes. I'm saddened to hear that all the rest of you are going through this too, but it's also kind of a comfort to speak with others having similar experiences.
Well, I must say I'm kind of feeling excited:) I met with a local urologist today and he feels pretty comfortable taking over my daughter's care. I still plan on checking in with Dr. Parsons in November and once yearly beyond that, but I'm feeling pretty lucky to have found a good local one to care for her. I've been to so many terrible urologists myself, so I just feel so tickled pink to have found another doctor that takes what's happening seriously and who's kind and cares. I'm glad I was assertive and feel like I'm doing what I need to do to make this right for her:-)
09-10-2009, 03:56 PM
Oh, I'm so glad you are feeling hopeful...finding the right doctor is key. I talked to Parson's office today and they are going to send me the big package and then we will get an appointment after we have completed everything. Thanks for all of your advice.
09-11-2009, 01:09 AM
I am so thankful for you. What a blessing!
09-11-2009, 01:30 AM
very good news!!!!!! :smile tee
Thanks ladies:) Tina, I doubt you will regret having your son see Dr. Parsons. If you wouldn't mind, please let us know how the appointment goes:) Anobgobeloba, you've got me wanting to try Cystoprotek for my daughter and myself! Did it take care of all your daughter's issues? How long had you noticed your daughter having IC like symptoms before you started her on it?
09-11-2009, 04:07 PM
hi jvr! i have to say that it has worked so well for us, i encourage anyone to try it!!!! i didn't realize how much it helped me with pain until i tried to stop taking it. holy crap!!!! brenna had been having symptoms for about 4 months i think. i started her on it as soon as she was diagnosed. i haven't changed her diet at all. she takes two pills a day, morning and night. they are big but she swallows them right down. you can squeeze them out but they stain everything!!!!! the last time that she has complained of symptoms was about a month after she started it. she has been symptom free since that time!!!! it still brings me to tears when i think about what an answer to prayer it is!!!! i can't even express, but i know that you can understand!!!!! i am so excited that very soon we will be able to say the same about your sweet baby!!!!!! please keep in touch :)
That's awesome you got her under treatment so fast! I've seen several posts on Cystoprotek on this site, but your experience along with your daughter have left me the most inspired to want to give it a try. My daughter has been on Elmiron for six weeks. I started her on a more safe IC diet at the same time, so honestly, I don't know what is helping her exactly right now. She is having less post void leaking and I haven't heard her complain too much about her stomach pain so I'm hoping that things will continue to get better and better. She still has some frequency to some degree it seems. This all still has my nerves pretty rattled, but I'm trying to keep the faith. Dr. Parsons said the Elmiron would most likely work in his opinion, (I got the impression it works very well in kids) but God forbid it doesn't, I just keep thinking that he highly likely would have more tricks up his sleeve. I definitely know that the I could try the Cystoprotek:) I think what holds me back from getting this right now for my daughter is that I want to know if the Elmiron itself is working or not. It crosses my mind quite often though! I really am considering ordering some for myself.
I'm envious that you never had to change your daughter's diet. This has been one of the most difficult aspects for my daughter. I'm hoping we can expand her diet out the better she gets. I'm so glad your daughter is feeling good again:) I'll definitely keep you posted on her progress. Again, it's so nice to be able to talk with you mothers experiencing or having experienced a similar situation:) Thank you!
09-14-2009, 06:45 AM
Our appointment is this afternoon. I am nervous. I hope we can figure something out. The thing that paradoxically makes me the most nervous is that she is feeling so much better now, that I am afraid they won't take us seriously. She has pretty much put herself on the diet and says she won't eat peaches or chocolate any more. She says she can tell she feels worse if she eats pizza, but she will still eat a little so it must not be as bad as chocolate for her. I am afraid they will say to just stick with the diet and let her get worse before they treat her. I DON'T WANT HER TO GET WORSE!!! Worse can be VERY bad! (However, I am not telling you all anything you don't already know!)
Sorry, I just had to do a little venting before this appointment!
I understand your nervousness:) If you're not happy with the outcome, remember you can ALWAYS keep looking for another doctor until you feel good about the outcome. I also am highly impressed by the Cystoprotek with Anobgobeloba's daughter, I'm still considering adding that in at some point. There still will be lots of options for you if you're not satisfied:) Hang in there and please keep us updated on her appointment:)
09-15-2009, 06:36 AM
Hello to all,
Well, we had the appointment. The doctor informed me that IC does not occur in children and that even if it did, he would not treat it because Elmiron is not approved for use in children. He is convinced that her whole problem is due to vaginal voiding and constipation. He told me to have her use Benefiber and Miralax every day for 6 weeks and then come back. He will then do an x-ray to see how constipated she is. If she still has symptoms at that point, he will consider other possibilities. He informed me very bluntly that just because I have IC doesn't mean that she does, and I have to be careful not to think that she does just because I do.
When we arrived, the nurse had her give a urine sample and couldn't get her machine to work. I don't know whether there was blood in her urine today or not.
I don't mind trying his advice for 6 weeks. That isn't terribly long in the whole course of life since she isn't really in a lot of pain or discomfort. He felt that her bladder could be irritated and that is why the acidic foods are bothering her. Unfortunately, I couldn't think clearly enough at the moment to ask why constipation would make her bladder irritated. I'm not saying it couldn't. I just don't understand why it would. I wish I knew if there was blood in her urine today. I don't believe constipation would cause that either, but maybe there is something I am missing.
I would have to admit that this doctor really rattled me. He was extremely confident (almost to the point of being rude) in his belief that children don't get IC. He said that he does treat some adults for IC, but never children. When I asked a question, he shot back an answer so quickly and adamantly that it was hard to think quickly enough to frame my next question.
I know that it might not be IC, and of course, I hope it isn't. I just wish the doctor had been open to the possibility. I have read enough on this site to know that many people's symptoms started in childhood.
I guess we'll take his advice for now, and keep an eye on her symptoms and see what happens.
Any thoughts??? I am feeling kind of confused about the whole appointment and am definitely open to any thoughts.
Interesting to say the least. I had a similar experience when I took my daughter to UCSF. They told me it was vaginal voiding. I did try having her turn around on the toilet to see if that would help and unfortunetely it did not. They couldn't also explain to me why the leaking seemed worse after foods like chocolate or tomatoes. Dr. Parsons has over 75 children with IC he treats and he told us that leaking is a classic sign of IC in children. He actually got pretty irritated after looking at the notes from the nurse practioner for UCSF. He told us vaginal voiding is not really all that commen. It can never hurt to try his advice, but if it doesn't work, I would run FAST from this doctor. I strongly believe that IC can occur in children because I had symptoms as a child and was told by my doctors it was all in my head. I'm really sorry that he treated you and your daughter like that. It makes me angry to think of all the poor kids that have seen these useless doctors who have been in a lot of pain only to be told that it's not IC. That is inhumane. We already know that they do it to plenty of women and men, but children?! It's just sick! Sorry, I had to vent for a minute...:cussing: Have you tried calling the ICA for a list of doctors in your area who treat IC in children? That is how I found a local urologist who willing to work with Parsons and is now prescribing the Elmiron for my daughter. Sorry, I'm not trying to say your daughter has IC..I'm kind of reacting from my own anger from my IC experience as a child and also as an adult. I went through several of my own idiot urologists who think they knew it all. I really hope this doctor's advice works, but if not, I KNOW you can find one that will help her. Sorry, I hope I didn't offend you, it's just that I would love these doctors to experience what IC is like and then I bet they would be willing to help their patients more....:tsk:
09-15-2009, 07:33 AM
:grouphug: Hi ktmeak, I hope you get some answers soon.
Keep The Faith:pray:
Hi Again Ktmeak,
I just was finally able to find my list that the ICA sent me and I found a doctor in Peoria, Illinois named Dr. Jose Hernandez. They did warn me that they did not know a lot about these doctors, but just that parents of IC children recommended them to the ICA. His number is (309) 692-9898. I don't know how far that is or if your even interested, but I thought that I'd share that with you:)
09-15-2009, 08:29 AM
that appointment doesn't sound like it went all that well! i'm so sorry!!!! i'd like to punch that dr in the balls!!!! not because he doesn't think YOUR daughter has ic, but because he would be so arrogant to say that children don't get ic. it's simply not true, and if he were keeping up on his education like he should be, he would know that while rare, children do get ic!!!! the lead dr in my daughter's general practice, told me that "children never get ic!" it's just not true and you might want to keep looking. i think the maralax sounds kinda harsh. but your the only one who can decide if you want to try that. if you do decide to give it a go, you can still pursue other opinions at the same time. please keep us posted!!!!! give your daughter a big hug for me!!! and yourself as well!
09-15-2009, 09:21 AM
How does Dr. Parsons go about diagnosing children with IC? Does he do a cysto?
No, thankfully Dr. Parsons did not do a cystoscopy. I was a little concerned initially about that. I felt like that would have been a little too tramatic for her to have to go through so I'm really glad he didn't. I didn't know what to expect when first meeting him, but he just asked a lot of questions and pretty much decided it was IC right then and there. I think especially since I have IC, he was not totally surprised honestly. I know I've talked up Dr. Parsons quite a bit, but I bet you could find a good doctor closer too. Although, I must say we made our trip to San Diego really sort of a vacation. We went for three days and took our kids to Legoland to make the trip a bit fun too. We're going back in November to check in with him and I'm actually looking forward to it. I really liked San Diego and we're hoping to hit one more attraction for the few days we're down there.
I hope this doctor is right. If your daughter is still having issues though, I know you can find a doctor to help...this local doctor near us that came recommended by the ICA-I don't think he would have done a cysto either to verify whether or not he thought she had IC. He read Parsons notes and asked me a few questions a said he keep prescribing the Elmiron and take over her care. The doctor in Peoria might be a good doctor too! Whatever you choose, I hope you find the answers you're looking for soon:) If there's anything else you need, please let us know:)
09-15-2009, 10:44 AM
:pray::pray::pray: I'm praying for your daughter. Bless her heart. She's too young to be going through this.
I would be looking for another opinion. Froman IC patient who has been diagnosed for 34 years at the age of 17 and I know I had symptoms before that, kids do indeed get IC. I had the same trouble with a urologist I had to see in the early 90's, he said the same thing.
Then in 2002 I found a great urologist in Ft. Worth, TX and he said I had classic IC.
I realize it may not be as common in kids but I can vouch that kids do get IC.
10-13-2009, 01:51 PM
uh!!!!!! brenna is very sick again!!!!!! she has been complaining of symptoms almost every day this week!!!!!! it's so awful!!!!! i think that i'm going to call my dr in the morning, because i don't know what else to do. but since she is so young i'm not sure that she will see her. the dr that diagnosed her won't see her for a year and that is just not an option!!! it hurts so bad to see her feeling like this!!!!!!
I'm so sorry to hear that Brenna is having trouble again. My heart sank for you when I read that. You sure have a lot on your plate right now:( The must be hard dealing with this especially being pregnant. I'm really hoping your doctor will see her, but if not, I noticed a doctor in Boston, Ma named Dr. George Klauber who will see kids with IC. His number is (617) 636-5360. I don't know how far this is from you though. That's the closest doctor I'm noticing on the east coast. (I found his name on a list the ICA sent me for doctors who will treat children with IC. It's not a huge list, these are doctors who have been recommended by parents.) Actually, this Dr. Klauber is the same doctor that has written some literature on treating kids with IC for the ICA. I just recently ordered it and can make a copy of it or fax it to you if interested. My daughter still is having some symptoms so I recently called Dr. Parsons office and spoke to his nurse for awhile. We have an appointment with him next month, but I still wanted to call and touch bases. She mentioned that Dr. Parsons might want to add in 10 mgs. of Atarax in the next couple of weeks or so if they're not seeing her respond like they think she should be. She was still very encouraging and hopeful and said she'd bet her house that Dr. Parsons was going to get her better. She said we are very lucky to have caught it early and began treatment. Brenna is very much in the same boat. In fact, Brenna has had symptoms for a shorter period than my Sydney. Just remember, there is much that can be done to help our daughters. I've been up and down with feeling positive to feeling scared out of my mind...very much like a rollercoaster. I'm just keep trying to remember the optimism of Dr. Parson and staff and that is what is keeping me sane at the moment. I just heard recently of a new instill that is going to be tested in the next few months or so that I believe deadens the nerves. It is being done by Pfizer. I just get really hopeful when I hear that clinical trials, etc. are occuring. The more treatment options that come down the pike for ourselves and our daughters the better! Let us know what transpires with your doctor if you get a chance. I'm definitely saying a prayer for you and Brenna. This is so unfair for such young children to be having to experience this. It literally sickens me every time I think about it. You are a such a good mom taking care of her and working on getting her the care she needs. I totally understand feeling overwhelmed by all this. It's so ridiculous that we have to search out and cherry pick doctors for IC. Just remember this too shall pass and we will get our girls through this:) One more thing, I know the diet is tough for children especially, but I have definitely noticed a difference for my daughter. When I keep her diet fairly clean of the no no's she doesn't complain about her stomach hurting nearly as much. It is very hard, but I think it has been worth it too. Dr. Parsons didn't want us to get to wrapped up in the diet, but I wanted to give her some relief sooner than later. His nurse also mentioned to me last week that they want her at the point where she can eat a fairly normal diet minues the acid bombs. (tomatoes, chocolate, citrus, etc.) We're still not there, but hopefully soon:) Sorry to babble on, I just wanted to share more of our experience thinking it might be beneficial to you in some way:) Again, please keep me posted if you can. Sending you both many hugs and prayers:pray:
10-15-2009, 04:54 AM
You and Brenna both have my prayers. I guess another thought is to make sure she isn't constipated as well. My symptoms are worse when I am, and it has seemed to make some difference with my daughter. I have been feeding her Fiber 1 cereal and Fiber 1 snack bars and using Miralax occasionally. She has definitely been getting "cleaned out." She has not complained of symptoms as much, although she rarely complains anyway. I have to remember to keep tabs on it, because she doesn't say much about it. I realize this won't cure IC, but maybe it would help make her more comfortable?
I still don't know if she has IC. She has her return apointment in 1 1/2 weeks.
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