I believe my daughter has IC

[Melly]

Hi all,

It has been a long time since I posted a note. My IC is under control with Elavil and Elmiron. However, sadly my 8 year old is experiencing symptoms of frequent urination. This has been going on (actually on and off) for the past 2 years. I feel horrible that I didn't pursue it further when it came up two years ago. The pediatric urologist told me children didn't have IC. I no longer believe that especially since her symptoms have resurfaced. We have an appointment with a urologist who treats children with IC on the 27th. In the meantime, Ellen is on atavax (hydroxynine) which I was able to obtain after pestering her pediatrician all day. Last night I cried myself to sleep thinking about my daughter, how much I didn't want her to follow me on this path. I feel somewhat at fault, that I should have done more when symptoms first start presenting, that I have let her down. I should have known better given my IC journey (I started having symptoms in my mid 20's). She is not having pain, just frequent visits to the bathroom, about once/hour while she is at school. Once she asleep, she sleeps through the night. I just want to see the expert and to see what treatments on going to work best for her. We are going to see a doctor, Dr. Richard Puschinsky in High Point, NC. If anyone has seen him or has other recommendations here in NC, please let me know. I am in the Chapel Hill, Durham area.

Thanks for listening -- any advice is welcome.

Melly

[musiclover]

There is another woman on these boards and her daughter also has IC. I remember reading that her daughter's symptoms are under control with only two Cystoprotek per day. Her user name starts with an0. She might find this post or you can look for her and share ideas.

[jvr]

Hi Melly,

I'm so sorry to hear about your daughter:( A few of us have been experiencing the same with our children. You might try looking back at a few of the threads to get some thoughts. Don't beat yourself up in regards to not taking your daughter in sooner. She still sounds like her case is mild and you are doing something about it now so I'm quite sure there are things that can be done for her:) How wonderful you have found a urologist who treats IC in children! It's terrible that it can be difficult for some of us to find a doctor who will treat our kids. You're very lucky! I just recently ordered some literature on IC and children from the ICA and would be more than happy to mail or fax it to you if you'd like. It's written by Dr. Klauber who is a doctor who treats kids with IC on the east coast. He actually talks about using antihistamines to treat kids so you just might be on the right path with what she's on:) We have found a local urologist who is treating my daughter and working with Dr. C. Lowell Parsons at UCSD on her care. Dr. Parsons has had her on 50 mgs of Elmiron twice daily for about 2 1/2 months and there is some talk of the possibility of adding 10 mgs. of Atarax. As I've written on these threads before, he is very optimistic about being able to treat her. It sounds like you may have a good doctor too so I'm sure your daughter will be doing much better soon:) I know it's scary. I've been freaked out of my mind lately, but I'm trying to remain calm and positive. I remember telling Dr. Parsons that I was worried about what her future would be like. I was worried that her quality of life would be bad and that she may never be very happy because of having to deal with IC. He was very reassuring. He felt that her case was manageable and that there was no reason to believe that she would not have a great life. It is these exact comments that are keeping me going and keeping me sane at the moment:)I know I probably sound like Dr. Parsons cheerleader, but I'm just so very grateful to him and his staff for what he's done for us so far. They've been so wonderful and supportive. That's wonderful that your IC is under control-this should give you some hope that your daughter can experience the same thing with her IC:) If you need to talk anymore, I'd be more than happy to chat with you. It can be such a scary and lonely place to be. Please keep us posted on your appointment if you don't mind sharing:)

Take good care,
Jill

[ICNDonna]

I just hope it's something other than IC. I have a niece (adult now) who had bladder symptoms as a child --- but now is just fine.

Donna

[Melly]

Hi all,

I really appreciate everyone's thoughts about my daughter. I try to keep my tears to myself while she's not here. I need to let go of my experience so that my emotions are kept in check - they always are around her - to others that's not the case. It is so hard for others, mainly my mom to understand. She keeps telling me that Ellen is healthy and she will be fine. I know Ellen will be fine and I am so glad that I am armed with knowledge and this support network - those things are my guides right now so that I can help my daughter. I remember when I first joined here. I was pregnant with Ellen. I recall the ultrasound - they even showed us her bladder. And all I could think was that I hoped she didn't get a defective one like mine. I don't know what the ultimate diagnosis and prognosis will be but I am sure the doctor on the 27th will be able to provide more guidance. Thanks again to everyone here! I will keep you posted about Ellen. Sadly she was up about 10 times last night before going to bed (she just couldn't sleep, kept feeling the need to go). At 10:30, she finally went to sleep with me by her side. How I wish I could destroy the IC monster for her. Maybe one day a cure will be found for this horrible disease.

Hugs to all,

Melly

[Melly]

Jill,

I would like to talk with you further -- perhaps we can correspond through e-mail. My address is mdubs@nc.rr.com. Thanks so much for your perspective on this. Everyday I worry about Ellen at school -- her teacher this year loves her and said she would do anything to help Ellen feel better. It is just hard being away from her, wondering if she's in pain. I think that drives me crazier than anything else.

Thanks again!!!

Melly

[an0bgobeloba]

hi there!!!!! i'm angela! i only have a second, but i wanted to send you hugs!!!! my heart breaks for you and your daughter because i understand!!!!!! my email is montpsycho@gmail.com. i hope we can talk soon!!!!

[Melly]

Hi all,

Ellen had a good day at school, not too many restroom visits. I have to keep reminding myself that her symptoms are not as severe as mine were before I started treatment. And, I am not going to let them become more severe. I am up to this challenge and I think Ellen is too. She has the best attitude. I am so proud of her! Sorry to be boasting so much!

Hugs to all,

Melly

[musiclover]

I think you have caught it very early and she's lucky that you are familiar already with this problem, so you know which direction to look for help. Since it is so mild, I wouldn't be surprised if she could feel totally normal just by controlling the mast cells with Atarax or Cystoprotek or whatever the professionals think is best. See what her doctor says and let us know how it goes!

[jvr]

Hi Melly,

You are not boasting at all! You have the exact attitude it takes to get through this the best way possible:) I'm glad to hear Ellen did better today:) She is very lucky to have such a loving, concerned, and caring mother!

Jill

[Melly]

Hi all,

Ellen has been on DH aloe since Thursday and seems to be doing better. I don't know if it's some placaebo effect, but she does seem to have less urgency especially at night. In the next few days we should be getting the cystoproteck in, so we'll see how that's works for her too. I still worry about her at school, but her teacher is very embracing and nurturing, so she should be okay there. Has anyone else tried these medications in children? Any feedback on this would be welcome. Thank you all for the notes and support so far. Just about 8 days until Ellen sees the doctor.

Hugs,

Melly

[jvr]

Hi Melly,

Sorry I have not gotten back to you sooner! What a crazy weekend we had:bonk: That's great about the aloe! I think I've read some that have noticed a difference fairly quick. So you are going to try the Cystoprotek for Ellen? It sounds like the two are a good combo:) I'll be curious to hear what you think. I wouldn't mind trying these two for my daughter and myself. Glad to hear Ellen is feeling a bit better!

Jill

[Melly]

Hi Jill,

I know a crazy weekend here too. Class reunion for me (22nd to celebrate us all turning 40) and family day at my husband's workplace on Saturday. Glad to have that all behind us. I would like to try the aloe too, but these things can be so expensive. And my IC seems pretty well under control with diet modification and Elavil. I have adjusted Ellen's diet a little so we'll see if that helps. Thanks for your note! I will keep everyone posted on Ellen's progress. Take care!

Hugs,

Melly

[KarenAnne]

Melly, I know you probably already know all about this awful IC, but have you noticed if certain foods or beverages are making your daughter's symptoms worse? Like when she was up all night, did she have pizza or chocolate or something? Is she having soda at school that may be contributing to the frequency? I see where you have changed her diet a little, but could she be eating things at school that you are not aware of? I will keep her in my prayers.

[Melly]

Hi KarenAnne,

Thanks for all the ideas about diet. So far I haven't seen a link between Ellen's symptoms and diet. For me, modifying my diet has been crucial -- I think I know what most of my triggers are. I pack Ellen's lunch everyday - she has a chicken sandwich (organic chicken and bread with no preservatives), apple juice with prelief, diary desert non-yogurt (nothing of note in it), honeydew sometimes, and maybe goldfish (the cheddar cheese may be a trigger). She says she notices no differences before and after eating, just that she constantly needs to go. She is able to sleep through the night maybe waking up once to use the bathroom. I just wish there was a clear test for IC and a clear way to treat it. I thought the aloe was helping, but after her report today, I just don't know. Any other ideas are welcome! I will keep you posted on what the doctor says. I probably will give her a dose of hydroxyzine tomorrow before school (doesn't seem to make her tired at all).

Melly

[Melly]

HI all,

I went to Ellen's school today to help out. Seems that her frequency issues have increased and this is with diet modification. I don't know what else to do -- I will keep her on th DH aloe and we're supposed to get the cystoprotek in Thursday, so I hope that helps. I just hate this disease -- why is this happening to my daughter, isn't one person in our family having his enough? I am jsut so angry. I worry about my daugther being in pain -- the teacher assures me that Ellen's in good spirits, but I can't help but worry.

Thanks for listening to me vent.

Melly

[KarenAnne]

Melly, Again, please forgive me for being so forward, but I'm wondering if it isn't the apple juice (even w/ Prelief). From the beginning, my main symptoms have been urgency & frequency. I can't imagine your poor little daughter feeling the same way. I know Deerpark water is safe, I drink it. And they make cute little child friendly bottles. Just throwing that out there. I will keep her in my prayers.

[jvr]

Hi Melly,

I'm sorry to hear that Ellen's issues have increased the past few days:( At least you will be seeing a urologist for her in the next week or so. Then hopefully you can really get to the bottom of all this and come up with a plan of attack. I feel angry about this too with my daughter. Isn't life complicated enough by itself? !:rant: My daughter is in good spirits too and is still generally a happy child and I'm very grateful at least for that through all of this:) I worry often too, but I'm trying to keep the faith. We'll get our girls through this:)_

Jill

[Melly]

Hi all,

I just don't know what is causing Ellen's frequent urination. Today she's been fine, went at 8:30 when she woke up this morning, then around 12:00 before we went out for lunch. She even had OJ (low acid) at breakfast. I haven't seen a food connection through this. I know she is experiencing a lot of stress at school. She says that she doesn't have pain and usually she is able to hold it without discomfort. Nighttime is a nightmare. She says she keeps getting the sensation that she needs to go -- she is having difficulty going to sleep because of it. That is how my symptoms started originally, but I had some discomfort too. Nighttime was really hard for me. She is on aloe (DH), and atarax, but I don't know if they're helping. We are taking her to the doctor on Tuesday -- maybe he'll be able to provide some answers. I don't know if this is IC or extraordianary daytime frequency. When she wakes up to urinate at night, usually only once, she is able to get right back to sleep. Maybe this is the beginning stages of IC.

Any advice or input would be most welcome. Any kids out there on a low dose of Elavil?

Thanks,

Melly

[jvr]

Hi Melly,

I wish I could give you some answers:( I do think you're totally smart to see a pediatric doctor who believes in IC to truly shed some light on this for you. I too am curious to hear what's going on. You would think that things like OJ would be more bothersome:loco: Is it possible she's having any delayed reactions? Keep us posted...I hope whatever is going on is more manageable for her soon....

Jill

[Melly]

Hi all,

We visited the pediatric urologist today and that seemed to go reasonably well. The next step is an ultrasound of the abdominal and pelvic area. He also mentioned another test, it sounded like a cystocopy (sp), but not with the distention part -- water would be put in the bladder through a small catheter (but not under pressure and he said it was not painful). Time was limited, so I didn't really get a chance for follow-up about it. I am not to keen on invasive procedures and unless there is some benefit to be gained, I will probably forgo this last procedure, unless someone knows exactly what this is. I think he does feel that Ellen probably does have IC. He gave another refill on the hydroxyzine. And we'll continue with some diet mod (and the aloe). Ellen did report a better day today, so that's hopeful. I do believe that stress may exacerbate hear symtoms because during the school week she seems to be having more problems.

Any input is most welcome.

Thanks,

Melanie

[Bekah79]

I hope you get answers soon and that Ellen gets the help she so desperately needs. At her age she needs to get the required amount of sleep to function in school. I will say a prayer for her tonight.


Keep The Faith:pray:

[jvr]

Hi Melanie,

You sounds like you're in pretty good spirits. I'm so glad that you found a doctor who is taking this all seriously:) I hate hearing those stories of those doctors that just brush these young kids symptoms off. Out of curiousity, how much Atarax is Ellen on? Did he mention at all how he treats IC in children? Did he have anything to say about the Aloe or Cystoprotek? I don't even know if you got this far with him, but I was just curious to compare notes on treatment, etc. Sorry to bombard you with so many questions...I haven't talked to anyone else yet who has gotten this far with a pediatric doctor, so I'm really curious to hear more of your experience. There does not seem to be a ton of pediatric urologists that treat IC so it's really interesting to hear their thoughts and to see how they all choose to go about treatment. I'm eager to see Dr. Parsons soon because I have like a million questions I want to ask him again.:bonk: Well, I'm really glad things went well. It sounds like you all are in good hands!

Jill:hi:

[jvr]

Oops, I meant you sound like your in good spirits. Whenever I proofread my posts, they always look fine. I never spot the mistakes until after I post them...please forgive me!

Jill

[glassd18]

I'm so sorry your daughter is having issues. I know you have probably checked this, but did you check her for a UTI? You can buy the test strips at the pharmacy. I know you probably already did this, but I didn't see it mentioned so I thought I'd throw it out there.

[survivor]

Melly,

I am so sorry to hear about your daughter. I too have a 13 year old daughter with symtoms of IC. The doctors are still in the process of trying to rule every other possiblilty out not believing that she has ic. I was also told that kids don't get IC. I know that is not true since I had IC at even a younger age than my daughter. Needless to say I cried for the first months of her urgency and frequency, thinking in the back of my mind that she has IC. My friends and parents tried to reasure me that she most likely did not have it. After 4 doctor and 4 neg bladder infections I decided to treat her as if she really did have IC. At that time she was going to the bathroom 13-15 times a day and 2 or 3 times at night. I took her off of all foods that could even possibly be negatively affecting her and started her drinking water from an artesian well. She was so IC diet sensitive it was amazing. Within a months time she is almost pain free and bathroom trips are around 8 times/day, sleeping through the night.

One day when she went to a movie with a friend she didn't want to leave to go to the bathroom. She held it till she got home, ooops!!! That was not a good idea. That caused her a horrible flare.

She takes oxybutynin when needed and DIET!!!


I was reading your lunch for your daughter. My only suggestion is that the applejuice is a killer. Another thought would be to try baby juice it is suppose to be a little less acidic. I would try pear and skip the apple at least until her IC flare calmes down.

Good luck to you both I hope to see more posts from you. I am sure I will be needing some friends through this whole thing. It is one thing to go through it yourself, but to see your children go through this, it is horrible.

[statesboro]

I know I have mentioned on here more than once by now. I decided I would throw it out again. It won't help much, but I do know a dude that was diagnosed at kindergarden age. Hey! It was not by the first doctor that he went to, either.(or that his parents had taken him to) Yep! He deals with more than IC. Of course, he is in high school by now.

[maryla]

I feel so bad for both of you and your daughters.!!! OH this horrid disease!

Lots of hugs and blessings

[Melly]

Hi all,

Thanks for all the suggestions and kind words of empathy. Actually since Ellen started the atarax, she is doing much better -- it took a few weeks for it to start to work, but she is having less restroom visits and is sleeping better at night. She is also on DH aloe and that may be helping too. We have been to a pediatric urologist, but it really seems we have to manage and guide our own care. What a journey this disease takes us on.

Thanks again,

Melly

[jvr]

Hi Melly,

I've been thinking about you:) That's great news that Ellen is doing better on the Atarax! I started my daughter on it about 3 weeks ago and I swear I noticed a difference after a week. Seems a bit soon, but I started noticing less trips to the bathroom which is great. We see Dr. Parsons in a week and a half and I want to discuss with him adding in Cystoprotek. I'm still not 100% sure the Elmiron has done much. I'm thinking diet and the Atarax have helped the most, but like I said I'm not totally sure. I want to talk with Parsons more about this to get his take on her progress thus far. I'm so glad to hear that Ellen is feeling better:woohoo: So good to hear from you on here too!:)

Jill

[Melly]

Jill,

I am so glad that your daughter is doing better too! I am going to dry the DH aloe too at some point. Elmiron didn't really do much for me, my sensitivities shifted, and for me I think Elavil really works the best. I flare about once a month and Ellen seems to be on similar schedule although she is prepubertal (may be due to phermones?). I have an order of cystoproteck here but I have been relunctant for Ellen to try that. Let me know what your doctor says. The doctor here was more knowledgeable about IC in adults, so Ellen and I are plotting our own courses (of course with his consultation. It always seems that we know more than the doctors about this -- you are so fortunate to have an expert in Dr. Parsons (sp?). Take care -- I hope you had wonderful holiday. I cooked a lot of the recipes from this month's newsletter.

Hugs and thanks for all your support.

Melly