I Have An Undiagnosed Child

Personal Stories, Advice, and Support 15 People

    Update......lots To Tell.

    Okay...where do I begin? For the past few months Dillon has been having trouble urinating.....added to the constipation issues. He sometimes goes up to 21 hours with no urine out put..no matter what he drinks...so that isn't the cause. Also his face and feet swell...to the...
    luckypickle luckypickle
    26-30
    9 Responses Dec 15, 2009

    New Meds. New Doctors.

    Update. A bit ago (aug 24) we went back to ACH for Dils urology appt. It was a different one that actually took his problem seriously and listened to us. Really really listened. That was nice. So the doc wants to talk to the genetics and research peeps and get us back there. He...
    luckypickle luckypickle
    26-30
    3 Responses Sep 2, 2010

    Just A Bit Of More Info.

    Okay...I posted this in a blog..but anyway. His genetics appt. was cancelled as his tests were okay..but only covered 20% of his genes. His file remains open and the doctor said perhaps in a few years better tests will be avaliable. They still believe it is genetic but can not...
    luckypickle luckypickle
    26-30
    4 Responses Nov 4, 2009

    Procedure

    So....today, rather this morning, lil man had his colonoscopy. Since sunday morning, until the appt, we had been giving him water and tea ONLY while also giving him mira lax and exlax. To clean him out. Anyway he didn't have ANY sort of BM until sunday night (about 7:30) then it...
    luckypickle luckypickle
    26-30
    2 Responses Apr 17, 2012

    Neuro And Urology

    Last appts were April 10 (urology) and April 11 (neuro)Sooooo this is what we found out : Doc wants to have a scope in his bladder to see if there is something they are missing. Did an ultrasound on his kidneys again. Also Dil always has clear UAs. But he hurts to pee. SO we now...
    luckypickle luckypickle
    26-30
    6 Responses Apr 12, 2012

    Mystery Baby

    I have a 20 month old son that had a very bad start and is still having problems pop up. At 6 days old he had 2 small seizures involving his hands and legs, after which he cried and got the hiccups. Both happened late in the day. By midnight he started seizing again. So at 7 days...
    luckypickle luckypickle
    26-30
    18 Responses Jun 2, 2009

    Another Doc. Another Trip. Another Ray Of Light.

    So....as you may know Dil had a GI appt this last tuesday. A new doc (Dr. Fuchs). This one actually said "this isn't normal, he is not doing this to himself" FINALLY!!!!! And I heard the most amazing words "the ball drops here. I WILL get to the bottom of this" I nearly cried...
    luckypickle luckypickle
    26-30
    21 Responses Feb 29, 2012

    June 4

       Last night Dillon had to go to the ER. He woke up hugely distended and his belly was hot and tender. We gave him his glycerian enema and waited. He didn't go. So we tried a warm water/soapy enema. Waited and waited...nothing. Just his screams. So much screaming. I...
    luckypickle luckypickle
    26-30
    2 Responses Jun 4, 2010

    Update

    My little one went to see the pediatric gastroenterologist yesterday. No diagnosis yet but she thinks it may go along with his genetic problem..whatever that is...Anyway our goal is 6 capfulls (six time the adult dose) of mira-lax for three days or until his stool looks like...
    luckypickle luckypickle
    26-30
    5 Responses Jul 3, 2009

    Constant Bumpy Road.

    Things get better only to get worse again. My little man was starting to stool everyday until yesterday. His belly swelled up and he didn't eat or drink much at all. It was a struggle just to get him to take his meds. (please read other posts to know what I'm talking about) So...
    luckypickle luckypickle
    26-30
    4 Responses Jul 19, 2009

    Here We Go.

    The last I posted...Dillon had lost two pounds. Then started to put them back on. Yay. But now...he is losing again. There are good days and bad days. I learned quickly to take each day for what it is and try to make the bad days happier for him. Like letting him eat what he...
    luckypickle luckypickle
    26-30
    3 Responses Apr 1, 2010

    My Story In A Nutshell

    Looks like you and I luckypickle are in the same scary boat. My oldest has hip pain that concerns the doctor.  All sorts of tests - fortunately the scary stuff came back negative, and she's on some pain killer medication that does the trick.  She lives a normal life...
    passionateactorxox passionateactorxox
    31-35, M
    2 Responses Nov 17, 2009

    This Is Confusing.

    My little one is dehydrated again today. He hasn't passed urine for 18 hours and is tired. His nurse was out and if he doesn't go by the end of the day we need to take him in to have IV fluids. This happens on and off no matter how much liquid he takes in...just another one of...
    luckypickle luckypickle
    26-30
    2 Responses Sep 3, 2009

    Update.

    Dillon ate today!!!!!!!!!!!!!!!! I'm so proud of my little Pickle. He was way distended today. All the urine that wa past was over flow for his bladder. I found out he is having an electromyography on April 28. They do that test if they think your bladder doesn't have the...
    luckypickle luckypickle
    26-30
    3 Responses Mar 21, 2010

    Graham Needs Help!

    www.grahamshealthupdate.blogger.com
    Myers2574 Myers2574
    36-40, F
    Apr 13, 2011

    Latest Development.

    What's in the works: Next appt is Feb 28 @ 9am. Can't afford to stay over night so we'll have to leave the house by 3am to get there in time. At least he can sleep in the car. This is GI.Then April 11 @ 2:30pm to neurology. As of today I don't know if they are going to re-run the...
    luckypickle luckypickle
    26-30
    2 Responses Feb 14, 2012

    Please Help

    25-year-old female with undiagnosed disease. Symptoms began in 2004 with eyelid and ankle swelling. After 5 month she developed polyserositis(fluid in pleural and peritoneal cavities and in pericardial sac). Tests were performed and Systemic Lupus Erythematosus was diagnosed...
    nattta nattta
    26-30, F
    1 Response Jul 27, 2012

    Struggling With No Diagnosis

    In comparison to others I feel like we are very lucky. My daughter has had a host of problems since birth. She spent the first 2 years of her life not really 'with it'. She didn't open her eyes fully until she was 3 months old, she cried all the time, didn't like being held...
    Torsie1000 Torsie1000
    31-35, F
    1 Response Sep 16, 2012

    Just A Bit Of What Is Going On Now.

     Well....Dillon went for a blood test last week....and yesterday we got the results. And something is wrong in his kidneys labs. We don't know much yet....but he is set up with the urologist in town. His doc sent over the labs....and if the specialist feels it's urgent he...
    luckypickle luckypickle
    26-30
    12 Responses Dec 30, 2009

    Update......

    A few months ago my son was up to 28lbs..and is now 25lbs. He is hardly eating anything and I hate to give him laxatives if he doesn't eat..but I'd hate even worse to have his intestines rupture because of a back up. I'm lost and worried. He is getting so smart and by all...
    luckypickle luckypickle
    26-30
    19 Responses Sep 5, 2009

    One of Those....months.

    Well things had been going okay.....meaning that my little man was sh*tting like a goose. (read other posts) He was taking three caps of mira-lax and it seemed to be doing the job. Well last week he started having lumps in his stool again. And then he started losing his appetite...
    luckypickle luckypickle
    26-30
    15 Responses Jul 12, 2009

    Test Results Are In?

    Okay as you know my son has many medical issues that have not been diagnoses. Well he went in for a chromosome count and a microarray analysis..both of which turned out normal. But with those results his geneticist said that the tests only cover 20% of his genes and many genetic...
    luckypickle luckypickle
    26-30
    5 Responses Aug 29, 2009
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