Need Advice Please

[ShawnaAB]

I don't have IC, but my daughter (Kera 15) does and was diag. last year with IC, endometriosis, kidney disease and IBS w/constibation. She had surgery last july for IC and endo. We had 6 months no pain last 5 with increasingly worse pain to now where the pain is awful ( 1-10 scale 8, 9, 9 1/2). The pain is mostly on her right side and her back (right now the pain in her back is at a 9 1/2). She has, since last night, been having palpitations (sp). We have been to her Dr.'s 5 times in the last 3 week (she has also not been to school in 3 week, a tutor is starting tom.). I am going to have to take her back to Boston tomorrow but my husband thinks it is for nothing because they have not been able to help her yet. None of the pain meds that they have given her have worked. The pain is so bad that it is waking her during the night. So wrote in her pain calendar that they have her keeping that she wants to curl up and die and that she feels she is depressed. I hate what this is doing to her and want to make it stop. She is 15 and should be going out with friends, having fun, enjoying life not in her room and in pain with no end is sight. We try very hard to keep it normal for her and keep things up beat, but this is effecting us all including her 6 year old but that thinks if he hugs her long enough that he can make her feel better. I found him on her floor last night sleeping, he told me this morning he just wanted to make sure is was safe. I need advice on some things that can help because I am not getting it from her Dr's. Don't get me wrong they are trying but it just is not working. The worst part is is has so many things going on it is hard to know which one is causing the pain. I guess what really want is my happy, out going, fun duahgter back (selfish I know).

Thank you for letting me vent and any help would be greatly appreciated. I just love my daughter and hate to see her in so much pain and not be able to fix it. As a Mom that is what I am suppose to be able to do, Kiss it better.

[Dixiefireball]

oh hon i wish i knew what to tell you to make it all better i have three children my self and pray i never have to see them in that much pain.
does your daughter also have hunner ulcers?? just a thought if she does it may be causing her alot of back pain lord knows it did me and i just had them removed.
Please let us know how she is. I really wish i had some answer for you.
sending you and your daughter many gentle hugs and lots of prayers.
Rhonda

[ICNDonna]

I'm thankful every day that I am the one with IC and not my daughters. I know it's very difficult to see a child in pain.

Have you had a consultation with a pain specialist? If not, that could be a good move for you for the present --- I think pain control really is a priority right now. Once the pain is eased, different treatment options can be tried.

I'm assuming she is on an IC diet. And it's important that she gets enough to drink to help keep her urine diluted.

I hope you find some answers soon. I understand that this is torture for you.

Sending warm healing thoughts,
Donna

[Katrina]

Hi, I am Katrina age 27, when I was 15 I wasn't too healthy either but it was when I was 12 that I missed lots of school because of my health. (long story....I think the health story link at the bottom of my post tells it) Anyway I have IC, Endo, and IBS allong with other things. I too deal with the problem of trying to figure out what problem the pain is coming from.

If you or your daughter would like to email me and vent or ask anything anytime feel free to do so.
I am [

If I can give you any hope by saying that I was very sick as a child but it hleped me to become a very wonderful person that my parents can be proud of. Although life is still difficult with my health at this age I can handle it pretty well now and it helps me to help others and have learned to appreciate it.


I hope things improve for your daughter and let me know if I can help in anyway.

Best Wishes,

[ozmum]

I can only imagine how heartbreaking it is to see your daughter in such pain and feeling helpless. I have recently been diagnosed and am still coming to terms with the realisation that there is no cure. here in Australia IC is not as researched and it has taken ten years for me to be diagnosed. With the help of this site WE can tackle this together and if your daughter needs a bit of a distraction perhaps she might like to email my 11 year old daughter who I am educating on this awful afflication so she has some knowledge and understanding of what her mum is going through. An "ozzie" penpal might be as good a medicine as anything you seemed to have tried thus far. Anything we can do to help. ridge.1@optusnet.com.au
Thinking of you all.
Tracey
:pray:

[ShawnaAB]

Thank you for your replies. I have an appt. at the pain clinic at Childrens in Boston on June 1. I also have made a second opinion appt. for the endo at Childrens on June 10 too. (We go to New England Medical Center, aka Childrens Floating Hosp., now)

Kera has a very good attitude about everything that is happening to her. We spent fourty overnights in floating last year and she met kids that did not go home, which was really hard for her. One Dr. asked her how she felt about what was going on with her and her reply to her was "Well, it really sucks, but at least I am going to grow up. I'm not going to die like alot of other kids that I have seen here." I don't know if I could be that mature.

[Katrina]

:grouphug: :grouphug:
:kiss: Thanks for the update.

[Ginny]

Pain medications keep me up at night. I try to take the last one at 4:00pm - no later. See if that helps. Elavil also might be a good idea for her so she can get some sleep at night. I hope the doctors will suggest that. Start out at a very low dose and work up. If not, she will be so tired all day long.

Keep us posted on what the doctor tells her.

Ginny

[Coleen]

I can relate to severe back pain. I have done a litle research on this and went to a IC support group meeting this past weekend and got some really good advice and someone else told me that they too had severe back pain until they went to see this certain DR at Beth Isreal Hospital. This dr. gave him a block in his back and this has helped him in 6 days he was pain free from his back pain. I was told that when your bladder is inflammed which is most of the time it presses against a nerver right around L5. I am calling this Dr. at that hospital in hopes to get the same nerve block that he received. It is a 3 hour meeting with the dr the first time you meet. Back pain is my biggest complaint. its been almost a year with a chronic lower back ache. I think its time for me to do something about it. And I think I have found the perfect Dr. to do it. Her name is Dr. Christine Asdourian at the Arnold Pain management clinic in Boston at Beth Isreal Hospital. I have not called yet but you can bet as soon as I can take more time off from work I am going for my interview. Well good luck ad I hope she finds some releif asap. I know how it feels..... Its terrible.. Tell her to keep her chin up. Hope this information is helpful.

[celine]

Please keep hope,prayers,always.No mother wants to see her children go through any kind of pain, no matter what.Please continue to talk to us through this great link.So many have helped me through alot of rough days, and have also given me a lot of insight.Alot of ideas come from this sight.Prayers continually going out.Ask the pain clinic about all options.Methadone is what I finally found that works for me.And I have tried everything with no pain releif. It's a huge difference when you do find something that works for you.It helps with depression,energy,just everything.So keep in touch, Celine

[littlebear]

Dear Shawna, I'm so sorry about your daughter's health. It must be tearing you up inside. Know that we are always here for you. I hope that the appointments in Boston will be really helpful to Kera. Sending you both all my best wishes, little bear

[Iris]

Hi Shawna, I know how you must feel, it must be heartbreaking to watch your daughter going through so much pain. I have a daughter also, and would not wish to see her in pain and dealing with being a teenager as well, and missing out on a lot of school and activities. I do hope that she can find some relief and help with her pain, she is so young to be fighting health problems, my heart goes out to both you and her. Glad that you have found us, and always ready to help out in any way that I can. I say thank you God every day, for finding the network and the very supportive gals that are here, hopefully I can be of some help to you in any way. Take care and keep us posted on how your daughter is doing, love and hugs to both Iris.:hi: :kiss: :grouphug: :flower:

[Ginny]

Please excuse me if I am repeating something. I can't read all the answers but read your entire post.
I just have a few thoughts. Not trying to be a doctor but I have had IC for 20 years and I probably tried everything.
Have they tried Elavil so she can sleep at night? Very low dose to start though because you are in a fog from it in the morning.
Can she try Lidocaine patches? It is not a narcotic, just lidocaine. I am sure it will not take the pain away but it has helped with my back pain.
I agree with the pain specialist idea. They may be able to find a balance where the medication helps but does not knock her out.
Don't stop with the doctors she is seeing. Just add a pain specialist. Also diet as Donna said.
I feel for you. It is so much worse when it is our children. You can almost feel their pain. I will be praying.

Ginny

[ShawnaAB]

Thank you all for your post. Kera has now gone to the pain clinic at Children's in Boston. They have her on a TENS unit and have started her on Neuronton(she is working up to 900mg daily). She will start accupunture on Monday. She went to a new gyn at Children's too, he has scheduled her for surgery on July 14th to take out the endo., then she will start Lupron. If that doesn't help with the pain then she will have a cystoscopy to increase capcity and see if that releaves any of the pain. She is also taking Amitriptilean & Ditropan. Her Uro. has said that over the summer he wants to start her on Emrilon (sp) to see if that may help. It is just very hard to figure out what is causing the pain with her because she has so many things going on at once.