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  • moodygirliegirl
    replied
    Thank you all for responding. JVR-My oldest (20) does take Elmiron and it seems to be working fine for her. My 2nd (16) was taking Elmiron, but had to go off of it because it was pushing up her liver levels too high. The Dr. hasn't suggested Atarax but I will ask him next visit about that. But she has been taking Urelle which mostly controls spasms in the bladder - that and along with a supper strict diet is keeping her afloat and pain free. I just took my 3rd daughter (12) in to a regular Dr. and they did all kinds of tests that showed nothing abnormal..bummer. So it is looking like we will have another one with IC. I will look into Dr. Parsons project...it sounds interesting and we would be good candidates for it.
    Tuckersmom-thanks for the advice on Prelief. It does seem to help her the last day.
    I have also contacted Dr. Oz-I know it seems silly but I just want to get word out there about IC - how else do we do it??
    Thanks for your responses and I will keep you all posted.

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  • Tuckersmom
    replied
    Please have your daughter try Prelief. This product has been a God-send to many of us. There are some amazing review on Prelief's web site, and several of them are from people with IC. Take a look for yourself:

    http://www.akpharma.com/prelief/testimonials.html

    Leave a comment:


  • jvr
    replied
    Hi,

    I don't think it's thought to be highly genetic, but that definitely seems to be the case for some of us. I have IC and my 7 year old daughter has IC. I've definitely seen some troubling signs with my almost 4 year old son too:-( One of my sisters has very mild IC I believe too. I don't know of any other history of bladder problems in either branch of my family outside of this though. I took my daughter to see Dr. Parsons at UCSD who has been one of the big key players with IC in years past. His own research has showed a much higher incidence of IC amongst family members than other studies. Since I have IC, he was not surprised in the least that my daughter was showing signs. There is some current research going on with genetics and IC at Boston Children's Hospital. (part of the MAPP Study) They especially are interested in enrolling families with clear genetic ties with IC. If interested, you might enroll your family. I think they are still accepting families.
    If you don't mind me asking, how has your other daughters responded to treatment? My daughter is on Atarax along with diet and seems to do okay on that. I didn't think Elmiron did all that much (although it's hard to gauge a 7 year old completely) I have always been curious if those of us with a more genetic IC respond to certain types of medications better.....(assuming that IC may actually represent different disease processes in various individuals.....)
    Oh, and yes, hormones definitely play a role in IC so it seems to appear for many....

    Thanks!
    Jill

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  • ICNDonna
    replied
    There was research going on several years ago which involved studying IC cases that involved more than one family member. I haven't seen reports of their results.

    Donna

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  • moodygirliegirl
    replied
    Here we go again!

    The doctor says that IC is not genetic....but I don't know what to believe. My oldest daughter who is now 20 was diagnosed at 16 with IC. My 2nd daughter started saying she thought she had it too at the age of 13 (she is now 16) she even kept records of what she ate and when she had pain. Now my next youngest daughter (currently 12) has been complaining of bladder pain as well for over a week!

    We can't get an appt with the urologist (3 hours away) until the 19th of July, since she is a new patient. The Dr. treats the other 2 daughters. When I took my second daughter in to get some testing done he was sure she didn't have it but did the dystention just to rule out IC....he came out dumbfounded, shaking his head saying I can't believe it...I have never had siblings patients with IC!! My oldest daughter was only his 4th patient in 35 years to be under the age of 20 to be diagnosed with IC.

    I want to know if there is any way - test, etc.- that could be done to see if it is in fact genetic. (We could be a testable family I think) I do not have any symptoms, nor have I ever had any problems with my bladder. Their Dad was killed in 2003, so I don't know if he would have developed the symptoms or was a carrier. His parents are also deceased. The girls' Aunts and Uncle on their Dads side don't have symptoms or children with it. None of my family members have it either.

    My oldest takes Elmiron, my 2nd daughter can't take Elmiron because it raises her liver levels so she is on Urelle. Is IC brought on by hormone changes or is it aggravated by them?

    Im desperate for information! Any and all could help.
    Thanks

    Leave a comment:


  • vivsmom
    replied
    Good luck! It is great that you found a specialist in high regard and have found a plan to help!
    It must be hard to watch your son go thru this. Blessing to you both!

    Leave a comment:


  • Tina B
    replied
    My son, 12yrs old, has been suffering with IC for the past 5 years. We see Dr. Parsons in San Diego. He has only been taking one Elmiron a day for the past year and a half. He is better...not 100%...but better. We did have him on two a day...but he had some side effects. Diet plays a huge role for him. And I am now starting him on a Alkaline based diet along with Fish Oil and Colostrom. He gets a big glass of freshly juiced green veggies (that I make at home)everyday that he comes home from school...he complains to high heaven every single day...but it helps him alot...so I insist!! I haven't tried other meds or alternative therapies for him...but will if he ever gets worse. My own case of IC is manageable...Most days

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  • Renate
    replied
    I am so sorry for your daughter and you! I was just diagnosed and having a hard enough time as an adult and my symptoms came over night just woke up one day with IC! No child should have to suffer this horrible disease and no parent should have to watch their child suffer. I pray you find a good doctor for her and she is able to live a normal and happy childhood and way beyond that!

    Leave a comment:


  • jvr
    replied
    Hi,

    That's wonderful news Tripleblessed! That's also great that you don't have to wait too long until the appointment either:-) I'm hope your daughter gets on a good treatment plan and is feeling better very soon!
    Keep us updated! It's nice to network with other parents going through the same thing.
    Jill

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  • Mothergoose
    replied
    I am very glad for you that you have a good lead on a Dr. for your daughter.

    When my son was sick that was the most frustrating part, was finding a good Dr. who believed what was actually happening to him. We took him to 2 different gastrointeroligists (sp) supposedly the best in their Field, at 2 different children hospitals. Neither one helped him at all both just blew us off, basicly said he was not, it was all in his head and I was spoiling him by byeing into his complaints. I knew better.

    With perseverance I figured out what was wrong with him and got him treated and his quality of life has improved so much, he will have to live with this for the rest of his life, but his quaility of life is back to what would be considered normal to a teenager of his age.

    Yes I am bitter at him loosing 6 years of his life to his disease, and bitter to wards these Dr. I wrote to them and let them know my son was actually sick and is fine with treatment.

    But I have let my anger go, it is easier to let anger go over wrongs done to you, than done to your child. My son did not let him be bitter about it, he took it all in stride.

    You just need to be your child's best advocate and let your child know that no matter what a Dr. says you believe them.

    I always took a note book write down all my questions to be asked, and a list of all symptoms your child is having, and I wrote down all response. In my experience poor Dr's will change their stories or what they think each time you see them, so you don't have to rely on just your memory, and can actually call the Dr. on conflicting info if you have it all written down. This can help with confusion after appointments etc.

    Let us know how the app goes. I hope this Dr. can help you child and things can improve for her. MG

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  • tripleblessed
    replied
    update

    I met a Rep today from a company that deals with urology supplies and as we were talking I mentioned I was having difficulty finding a Ped urologist that treats kids with IC. She immediately told me she knew of one at Swedish in Seattle. She likes this Dr so much that she is taking her own daughter to see her. I called and they can see her on the 15th of June! I was so dissapointed with the fact that 2 hospitals known for taking care of children were not very encouraging over the phone but after talking with this Rep, I have more hope that we can find an excellent physician to help us manage this disease.
    I just wanted to share a little update and thank all of you for your support.

    Leave a comment:


  • Linda May
    replied

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  • skybluesoul
    replied
    I used to have my worst frequency in the morning also. I've been on hydroxyzine (generic for atarax) for awihle, and that has helped a lot. It made me very drowsy at first, but I got used to it after a few weeks. I don't know if that's an option for your daughter, but might be worth looking into if you haven't already.

    Leave a comment:


  • tripleblessed
    replied
    Jill
    I also wanted to thank you for your input. Our local urologist is hoping at the least to find someone in state to consult with. It's an odd situation, our area has been without a urologist for about 4 years and we finally got one to come to our area last September. Being new here, he is not that familiar with the support available from Seattle or Tacoma. Who knows, maybe the PA in Seattle will have a fair amount of experience with treating IC and be able to help Rebecca but as much as I keep hearing "we don't really treat it since it isn't that common in kids" I am not holding on to too much hope. I will try the ICA list of Dr's that treat IC to see if I can come up with any options in western washington.
    I have not heard of the rescue instills but I can imagine what they are. Thankfully her pain is only if she is unable to use the bathroom. It is something I will keep in mind for possible future management needs.
    Thanks for taking the time to reply, I really appreciate everyone's support and compassion.

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  • tripleblessed
    replied
    Thanks for the reply. Her current school has been understanding. Her teacher lets her go without asking and the principal has talked with her choir and PE teacher as well. Since returning to school this week, she has only been going for the 1st half of the day. Next week she'll go back full-time so we'll see how it goes with the PE and Choir teacher then.
    I also talked to the principal of the school she'll go to next year. I mentioned the 504 plan but he didn't think I needed to do that. He assured me that he would talk to her teachers and she would never be prevented from going to the bathroom when she needed to go. If she has any issues I will go back and insist on a 504 plan.
    I never thought of asking for her to have the ability to stand in the back of the class if needed. She has told me several times that sitting makes the symptoms worse so it makes sense to allow her to do that.
    Thanks for the support~

    Leave a comment:

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