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  • #1

    Update on my daughter

    Well, I wound up taking her to the pediatrician on Friday because her neuro appt isn't until the 26th. I just couldn't wait that long to see a doctor. The doctor really doesn't know what's wrong with her either. It's SO frustrating. She did manage to go to school today but I'm absolutely terrified that something is going to happen to her there.

    This is SO hard. I can't STAND the not knowing, and the waiting for the neuro appt. Nobody can say for sure WHY she had this seizure right now, and nobody can guarantee that it won't happen again. The pediatrician was worried enough she ordered 2 rx's of valium suppositories, one set for home, one set for school, in case she seizes again.

    She's had some sort of stomach bug, but the doctor can't say for sure if that's just a coincidence or somehow the cause.

    I haven't been around here much, just really exhausted and when I do have a free minute I'm resting. I'm starting to get that funky kidney pain back again, only in the left kidney, but it's definately there. I'm not going to sit on this like I did the last time. My daughter needs me as healthy as possible, and I just can't be sick like I was a couple weeks ago.

    I need all the prayers and well wishes I can get. I'm just an exhausted mom who's worried sick about her baby.

    *IC-- Summer 2004; PFD--October 2005
    *Fibro--Fall 2000; CFS-- Fall 2000
    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

    Total Abdominal Hysterectomy--adenomyosis--9\08

    04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.
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  • #2
    Sandy,

    Sending lots of prayers and well wished for you and your daughter.

    April

    Comment

    • #3
      Sending hugs and prayers.

      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.       [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

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      • #4
        Definitely take care of yourself. You are right, daughter needs a healthy mom. My prayers are with you and your daughter. Nothing is more stressful than the "wait"

        Comment

        • #5
          Sandy,

          Can your daughters pediatrician order an EEG by chance?
          My son had a seizure out of the blue a few years back. The ER Dr had us follow up with the ped, who saw him the following morning. The ped ordered an EEG that was done 3 days later. Fortunately nothing was amiss--turned out it was a febrile seizure. The fact that the EEG was ordered so quickly surely helped with my worry.
          I can surely understand how nerve-wrecking the waiting can be.
          Hopefully you'll get some answers very soon.

          Diana
          (\__/)
          (o.O )
          (> < ) This is Bunny. He's on his way to world domination.

          Comment

          • #6
            The ped wanted to wait for the neuro unless she had pretty severe symptoms today, then she was going to talk to the neuro and order the MRI and EEG ASAP. I guess if she is able to get along ok at school today then hopefully we'll make it til the 26th.

            I had thought about febrile seizures, I sure wish that was the answer here. I took her temp that morning and it was 98.3.

            I'm so glad that your son was ok dg. Seizures are SO scary!
            *IC-- Summer 2004; PFD--October 2005
            *Fibro--Fall 2000; CFS-- Fall 2000
            *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

            Total Abdominal Hysterectomy--adenomyosis--9\08

            04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

            Comment

            • #7
              Sandy,
              I am so sorry you are going through this, it has to be taking a toll on you and your health..I pray that you are able to stay strong to get through this with your daughter..God Bless you and your daughter
              Hugs
              Ronda

              ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


              Link to Patient Handbook:
              http://www.ic-network.com/handbook/

              Diet Reference Sheet:
              http://www.ic-network.com/diet/icndi...tsheet0909.pdf

              Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

              Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

              Meds I have Tried:
              Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
              Lexapro< Bad reaction to this med!
              Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

              Dx With IC in Nov 2006 with Hydro/Cysto
              Hydro/Cysto Caused Bladder to Rupture.

              Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.


              ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

              Comment

              • #8
                I know you are a totally worried Mom, and who would not be. I sure hope she is okay until you can get her into the neuro and then that nothing major is wrong with her. 'ers coming your way.
                God grant me the serinity to withstand the days ahead!!!

                My myspace link...
                www.myspace.com/patricia_luvs_matt

                Patricia

                In Memory of My Father (Lawerence) 1/25/2007

                Procedures:
                Interstim Sept 2001
                1st InterStim Removal May 2005
                2nd Interstim Implanted May 2005
                2nd InterStim Removed March 2007
                Hysterectomy 1999
                Tubes Tied 1997
                C-Section 1996

                Me and my kids


                Taylor (my daughter) Me and my daughter My son Cody and Taylor

                Comment

                • #9
                  (((hugs))) Sandy and lots of prayers for your daughter.
                  Sharon

                  Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                  Where I can be found most days.



                  Link to the ICN Patient Handbook:
                  http://www.ic-network.com/handbook/

                  Link to the IC Diet:
                  http://www.ic-network.com/diet/


                  IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                  Comment

                  • #10
                    ****
                    Jen

                    *Diagnosed with severe IC in 2004
                    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                    **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                    Comment

                    • #11
                      You and your daughter are in my thoughts and prayers.

                      Erika
                      IC diagnosed officially via cysto/urodynamics 1/26/07

                      Grade II Endometriosis diagnosed via lap 12/11/07

                      "Fall down seven times, Stand up eight."

                      "Life is a tragedy for those who feel and a comedy for those who think."

                      Current Treatments:
                      Interstim Since 5/25/07!
                      Birth Control

                      Comment

                      • #12
                        It's 2 pm and no calls from the school. I'm hoping she'll make it through the day without an incident. Fingers crossed, only a couple more hours to go til she comes home!
                        *IC-- Summer 2004; PFD--October 2005
                        *Fibro--Fall 2000; CFS-- Fall 2000
                        *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                        Total Abdominal Hysterectomy--adenomyosis--9\08

                        04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                        Comment

                        • #13
                          Sending positive thoughts her way and yours!! Big hugs!
                          Hugs,
                          Tracey
                          How do you eat an elephant? One bite at a time...

                          Harry arrived 2/23/09!



                          *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                          IC Diet Cheat Sheet:
                          http://www.ic-network.com/diet/2009icdietlist.pdf


                          Dx's:
                          IC dx'd Nov 2004
                          Lymphocytic Colitis dx'd July 2005
                          Possible IBS
                          Current IC Meds
                          Vistaril 25mg in the evening
                          Previous IC Meds taken:
                          Cystoprotek - 2 caps 2x's a day
                          Elmiron, 100mg 3x's a day
                          Ditropan, 5 mg 3x's a day
                          Others:
                          Wellbutrin 150mg 2x's a day for Anxiety/IBS
                          Pepcid 40mg a day for GERD
                          Zytrec for Nasal Allergies
                          Align Probiotic daily for IBS

                          Comment

                          • #14
                            Thanks guys! I really appreciate it. My baby did pretty well in school yesterday, and part of that reason is the email I sent to all of her teachers. I pretty much told them that if she says she's dizzy, she IS, and if she looks like she doesn't feel well, she DOESN'T. Megan said all of her teachers asked her if she was ok, and one even let her go in a quiet workroom next to the classroom to do her work because the room was so noisy and hurt her head. How nice is that?? She came home and began fighting with her little brother so I knew ALL was well!!! Well, as well as can be expected. She really does have some color back in her face, the stomach bug seems to have gone on it's merry way, and other than a headache and getting dizzy a couple times she was fine at school.

                            Now, to make it til the neuro appt!!! I'm praying SO hard that this was just a fluke and will never happen to her again.

                            I don't know what I would do without all of your support. I'm so greatful for this board!!!!!!!
                            *IC-- Summer 2004; PFD--October 2005
                            *Fibro--Fall 2000; CFS-- Fall 2000
                            *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                            Total Abdominal Hysterectomy--adenomyosis--9\08

                            04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                            Comment

                            • #15
                              I know the waiting is horrible of not knowing. Hopefully she will continue to get better. Sounds like mom needs some comforting too

                              Prayers for both of you, Trishann

                              Comment

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