pulling our hair out!!!

[mom of IC gurl]

I posted a couple of months ago about my 11 year old daughter who was diagnosed with ic. We are doing everything we are supposed to do. She is following the diet, we don't drink anything but water, she takes elmiron, ditropan, atarax, and we were taking tofranil but her doctor took her off of it, and she is in a biofeedback program. She had a bacterial infection that we treated, why is she not getting better? Her doctor assures us that we will get it under control, but why is it taking so long? Can anyone tell me something we have not tried that may help? This is breaking my heart! Her letter to Santa thanked him for any gifts he may leave her, but all she really wants is to feel better, even if just for a minute, just to remember what it feels like not to be in pain. I cry myself to sleep because I can't help her. She is in therapy now as well, because I worry about depression. She can hardly walk because she is in so much pain. She complains that her pelvic area is swollen, it does sometimes feel puffy, does anyone else experience this, is it common? If so, what exactly is that? She also complains that her vagina burns all the time. Right now there is no bacteria, or yeast. Her gyno (I am sorry, but an 11 year old should not have to have a gynocologist)gave us some premarin cream to try, hoping it would give those tissues some relief, but so far, no. She has told us we will just keep trying until we find something that works, but Ashton is really losing hope. She yells about taking all this medicine when nothing is working. She has not been able to return to school as she can barely walk, or sit. She has not slept through the night since August. I just, I don't know which way to turn, does anyone have any advice? Please! I am losing my mind, and I can't even begin to imagine what SHE is feeling!


God Bless all of you that are living with this, as well as those like me, who have a child or loved one living with this!!



Suzette

[Kiyoka]

Hello Suzette, I'm 21 years old. I'm sorry for everything that is happening. Please email me kiyokafett@yahoo.com or sometime if you need anything. I had tried alll that you mentioned, and they didn't work for me. Right now i'm doing dmso cocktail. the first time worked for me. do you know if they do do dmso? I also have the burning over there. They also thought it was a vaginal infection but everything came back fine. I would see if you gyn could give you a antibotic like Metronidazole. My dr give that too me. I wish you the best of luck and please let us know how she is doing.

Kiyoka

[kelly McC]

I am so sorry she has to go through this. I hope between your support and help and the gyno a treatment will help her. I would keep @ the doctors keep trying different options available to her until she's feeling better. I wish I could offer more but my prayers are with her and huggs to both of you!!
Kelly

[vm]

Has she gotten worse since going off of the Tofranil or was that not really helping? Is she on any pain medications? I wonder if she needs something for the pain in addition to the other meds she is on. I don't know how that works in young children.... How long has she been on Elmiron? Has she had ANY relief since being diagnosed? :(

Have you ever looked at the info here on vulvodynia? I wonder if some of those self help tips might help with the vaginal burning. Here is a link:

http://www.ic-network.com/handbook/selfhelp1002.html

As for the pelvis puffiness it may be this:


#11 Sandie asks "Why does an IC patient often experience the IC belly.. the generalized swelling of the lower abdomen...that so many of us have found so frustrating?" "Why does it suddenly go away?"

Dr. Theoharides - A possible explanation is that the beginning of inflammation always involves what we call increased vascular permeability, which means that the blood vessels dilate and become leaky. The first thing that happens is that a lot of fluid comes out of the blood vessels and into the tissues. Then what happens is leukocytes/white blood cells come out and that might also set up inflammation. So, to the extent that the blood vessels become leaky, alot of fluid will come out and cause the "IC belly".

The dilation of the blood vessels doesn't last a long time. To the extent that we discussed earlier, nerve endings come to the different parts of the spinal cord. This will make different parts of the abdomen swell up. In this problem a drug like Atarax could possibly be helpful because the primarily molecule that causes the swelling is histamine. One of the more effective therapies for IC is the use of antithistamine, but it's a unique antihistamine - hydroxyzine (ATARAX OR VISTARIL). It is unique because it has four properties:

*Antihistamine
*Anticholinergic (reduces the urge to urinate)It is sedating (reduces nocturia)
*Slightly anti-anxiety (but not as good as valium) Atarax, in greek, means to calm down
*It blocks mast cell activation in about 40% in the bladder, as well as elsewhere.

http://www.ic-network.com/askthemd/theo0503.html

Suzette, I can't imagine how much this breaks your heart. :( Please know we are all here for you and will try to help as much as we can, OK? :kissing:

[mom of IC gurl]

She is not on pain meds because my urologist, and the urologist that we saw for our 2nd opinion , refuse to prescribe because of her age. I feel like they should. I understand concerns, but we are about to the point that we can deal with long term effects later, she needs to feel better NOW. (Do I sound as stressed as I feel?) She uses basic ibuprofin, which does not help. She was no better or worse on the tofranil, but he took her off of it since it did not seem to be helping. She has been on elmiron for 2 months. Thank you for the passage about the puffiness. Sounds like that is what it could be but we are already on atarax. Maybe I should ask the doctor about a higher dosage. I would give anything for my baby to feel better.

Thanks also for your feedback. I am so greatful for this board. I pray everyday for everyone living with this!


Suzette

[Cali girl]

I know that the Elmiron can take a while before it starts to work. It can be a very slow and gradual process. I know it can take anwhere from 6 months to a year. I do pray that she feels better soon. I am sending lots of hugs and kisses to you and your daughter.
:grouphug: :grouphug: :kissing: :kissing: :pray: :pray:

[ICNDonna]

Elmiron can take up to six months or longer to become effective; she definitely needs some relief in the meantime. I'm surprised that your doctors are not willing to help with the pain. I suggest ask about a referral to a pain specialist. Another thought is that sometimes city water supplies can be irritating, especially if it's strongly clorinated. You might give bottled spring water a try as an alternative for drinking. Some find Evian to be best; I just make sure I buy spring water with no additives.

I wish I could be of more help.

Sending encouraging hugs,
Donna

[vm]

I've been thinking a lot about your daughter since you posted and about pain relief for children. I was thinking about kids with cancer and the fact that their pain is treated. I did a quick google search on "pain management children" and got these results:

http://www.google.com/search?hl=en&q=pain+management+children

I haven't looked at any of the links yet....

I wondered if you did your own research on pain management in kids - what is out there, what is current, what is safe, dosages, etc. AND had your daughter keep a pain diary rating her pain on a scale of sorts AND brought your doctors lots of information on pain in patients with IC ------ if that might persuade them to treat her pain. Or at least persuade them to refer her to someone who can manage that part of her IC.

This link gives instructions on how to download a "Faces Pain Scale" on which children can rate their pain:

http://www.dal.ca/~painsrc/docs/pps92.html

This is another link on pain scales:

http://www.intelihealth.com/IH/ihtIH/WSIHW000/29721/32087.html

[vm]

Also, ibuprofen can be an irritant for some people with IC. :(

[Imustpee]

I feel your pain and frustration,,,I got I.C. in 1966, at the age of 6...dr's had no clue to what I had..they told my parents my bladder was small, I would grow out of it, I just wanted attention since there was nothing wrong with me...I didn't start any meds ( Elmiron) until this July...that's 38 years on my own...keep fighting...your girl needs you..I know my parents did the best they could, but now we know what we are dealing with, when in the 60's they didn't....thankfully I do not have the pain that most do..nor the burning...I just feels a heavy pressure that feels like my bladder is so full it's ready to pop....good luck...keep us posted..

[mom of IC gurl]

THANK YOU FOR THE FEEDBACK. i AM GOING TO GO TO THE PAIN LINKS RIGHT NOW.

IMUSTPEE, I AM HEARTBROKEN READING THAT YOU SUFFERED FOR SO LONG. I TRY TO STAY THANKFUL THAT WE HAVE COME SO FAR, IT IS JUST SO DISCOURAGING TO SEE ASHTON CRYING, AND KNOW WE STILL HAVE SO FAR TO GO.

God Bless,

Suzette

[Imustpee]

Thank you for your concern Mom...I.C. is all I know,,I was never "Normal" first, so I know nothing else,,,,,, Elmiron has been a miracle for me...

[Betsie]

We in the Boston/New England area are so fortunate to have a top Children's hospital available and my own daughters have been there several times. One was to see a urologist at 5 yrs old....with IC like complaints....who knew? I have it, she outgrew a horrible episode of something.

But does Seattle, (hmmmm am wondering if I read that correctly) has a similar facility. My advice from Mom to Mom: don't stop for unacceptable answers....push and push and push your way through the system and find out who the TOP pediatric Uro is in your area or city and demand an appt ASAP. I'm sorry to sound so pushy, but I have had tons of experience with patience advocacy and like any other business, the greasy wheel gets the oil. It may take time, but don't hold back...you can push in a diplomatic way to advocate for your daughter....as many others here can attest to, IC is a painful and annoying disease, The sooner her treatment kicks in and is right for her, the sooner she will be normal in your eyes, and I promise she can get there, be open to tweaking of her treatment options. I would be opposed to any urethral dilation or similar procedures...I have no experience, but would be concerned for the emotional toll and misunderstanding. I would even have the **lls to call Dr. Moldwin in Long island to get a phone consult and direction....I can be very persistent. Good luck Mom, I know how this hurts your heart, you are doing a wonderful job...it's exhausting, but hang in there and lean on us whenever! Looking back, my exasperation with my now 22 yr olds experience was after awile lacking in patience...reach out to your own primary if needed for understanding and help for anxiety/sleep. I was beside myself......our kids can really unnerve us.......it's called love! ;)

[Imustpee]

Seattle is 60 miles East from me...It has several top hospital..Uni of Wa, Seattle Childrens, ...my uro has a practice at one of the Doctors Clinics...about 17 miles from me..

[Betsie]

Well, if it were me Suzette, and you may have already researched, I would be online to all the .org sites associated...just google the names in....keep searching until you find the peds urology areas and read what they specialize in...it may take a few phone calls, but perhaps it will reveal an IC specialist. It certainly can't hurt to look into the possibilities. :help:

Thanks to I.M.Pee~ :kissing:

[Imustpee]

Betsie is right,,,,pick up that phone and tear up those phonelines....find someone to help...don't give up....my parents did, but I.C. wasn't known then...I remember several times thinking my parents think I am lying or crazy..no one else went pee every 40 minutes...I was told I had I.C. in 1976 but there really wasn't a treatment except for dmso...I had a treatment, stood up and it all ran down my legs....Navy dr didn't even get it in my bladder...needless to say my parents didn't take me back...so I lived with it in this last July 2nd....I am 44...now I know what it is like to be almost normal..I still pee more than anyone but not as much as I used to,,

[Betsie]

OMG-I just realized i was reading I.M. Pee's location, but my advice is the same and thank ou IMP for standing behind this...obviously as an adult i know the misery of this, though so much better now...but as a parent I nearly lost my mind, my daughter walked out of the bathroom and right back in.....so i truly get how even the best and most understanding parent can get completely overwhelmed...and I will admit the entire peds practice treated it as an emotional disease...hers and my reaction to the severity, my memories are making me a tyrant for you!!!

I am a relentless advocate when needed, don't qwuit, no matter what one ?Dr. tells you. Sorry I confused the location, holiday sleepiness....with unable to sleep misery. LOL.

[Imustpee]

My son pees about 2- 3 times a day..his bladder must be huge! Hahahahha

[kelly McC]

I wanted to check and see how your daughter doing ? I had a thought I remember when I could not find a doctor who knew what IC was or get taken seriously about pain control I searched myself the local hospitals had links to all providing doctors and under each heading there expertise was listed. To my surprise several uro's and gyno's had IC listed.. also pediatric uro listed.. It took me awhile and I was nervous for another let down but I now go to those doctors and it made a world of difference for me. Also not all pain clinics are willing to treat IC patients as I found out in our area there 5 pain clinics and only 2 would see IC patients for various reasons.. Might not be the case in your area ..I was referred to a pelvic pain specialist dont know if there is one in your area but he knows his stuff about pain control.. Maybe worth a try to see if there is one in area also you can call the pain clinics and ask if they treat IC I did and saved me time and money.. My uro called a few and I called the rest. Good luck and hope shes feeling better keep us posted...
Kelly

[Howard Burkhart]

I am sorry your daughter is going through this. Our 12 year old daughter has been diagnosed and this started a year ago for her. She feels the same frustrations as you mentioned. I imagine your daughter has lost a lot, including friends, most enjoyable things, school, doesn't get out much, optimism, and even hope for the future. It's not always like this for her, but at times it is.

We are fortunate to live near Stanford and are seeing their ped. pain management clinic as well as other specialists. They have readily prescribed pain meds as needed. My daughter's main sympton is the bladder spasms, 24/7. She is 4 months in on the Elmiron. She is currently in a flare and it is brutal.

As the others have said, keep pushing the doctors. Also for the school, we finally got a 504 accomodation that gives her a reduced schedule as well as some reduce work load. We had to do a lot of education to get this.

My wife and I went to USM in Hattiesburg a long time ago. It is tough on the parents as well.

Let us know if we can be of help in any way.

Howard Burkhart

[blue]

Poor sweet baby!

[Betsie]

This may be a huge stretch and i am just re reading this and just as frustrated for you as I was when you first posted. Do you have the means to travel, and if so would you consider it?

I ask this because often the best pediatric speacialists are in urban areas far from many of us. When I was first in the grips of IC and prior to seeing an IC specialist, revered for his work...only as a second opinion and right in my my own city... I would have traveled anywhere for answers and relief. Many here have incredible Drs and many of us have tolerable ones. For my child if possible, I would not settle for tolerable.

I dont mean to suggest you have not done enough, I just wonder if you have thought further away. I think UROS, and good ones at that can establish a protocol that our home Dr.s can follow.

I agree with you about the pain issue. Uncontrolled pain in a child this young is barbaric and to me, seems a worse long term affect , than the pain treatment issue. I am a mother who abhors pain meds in my daughters just following surgery...but this is different. Yes, they did get their meds.

Kim has gone and found some great links, I hope they have helped. I would also look into a patient advocate for your daughter, if you feel that "Mom" is not being taken seriously, having an advocate along may turn some heads. I do see you haven't posted here in a few weeks, so I do hope that means you are on a better path. Let us know if possible. Hugs to you and your daughter, it will get better, but i know how this can stress you to the max. :kissing: