good vibes, prayers, rattle bones requested

Discussion in 'The Watercooler' started by seriously, Jul 5, 2011.

  1. seriously

    seriously New Member

    difficult child 2 has lost 21 pounds (13% of his body mass) in the past 30 days including 12 pounds in 6 days last week when he was at camp.

    He isn't hungry most of the time and is complaining of a growing lack of stamina.

    He has multiple health problems including being immune suppressed.

    I am trying to stay positive but the most likely explanations for this kind of severe, sudden weight loss in a kid like mine are really very scary.

  2. KTMom91

    KTMom91 Well-Known Member

    Oh, PJ...hugs and prayers going out. How very scary.
  3. Mattsmom277

    Mattsmom277 Active Member

    How intimidating!! Vibes on their way complete with rattling. Do you have a doctor appointment set? Poor kid, that's a rapid loss. I'll be hoping for a update with good news and a simple fixable explanation.
  4. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Fingers crossed and prayers going out
  5. seriously

    seriously New Member

    First doctor's appointment with pediatrician is tomorrow afternoon. Then we'll probably run labs that day or the next.

    His pediatrician GI has given him an appointment 7/18. Usually takes 3 months for an appointment with them.
  6. Hound dog

    Hound dog Nana's are Beautiful

    Saying prayers. Weight loss like that is concerning.

  7. gcvmom

    gcvmom Here we go again!


    Is he eating at all? Have you seen any other signs or symptoms that could give you some clues?

    I know he'd put on weight because of the medications, but this is way too much coming off too quickly. Sure do hope it's not serious!

    Keep us posted on what you find out!!!
  8. gcvmom

    gcvmom Here we go again!

    If he's not eating, that would sure explain the weight loss AND the lack of stamina. But I realize it's probably not that simple.
  9. seriously

    seriously New Member

    He is eating some but only very small amounts infrequently and he seems to be eating less and less. He says he is just not hungry. Even things that he loves he is suddenly refusing to eat at all.

    He's had poor stamina for quite a while but we chalked that up to depression. His labs have been textbook perfect for months so it shouldn't be hard to spot any abnormalities there.

    pediatrician GI has sent me 2 e-mails today asking for albumin levels in particular.

    He had already lost some weight over the past year so his BMI was down to 30 last December. By 6/1/11 it was down to 28.6.

    At his current weight his BMI is 24.5 a difference of 4 in just one month.

    I don't think it's Anorexia Nervosa but I suppose that's one possibility.

    I'm pretty sure I'd rather have it be that than pancreatic cancer or HSTCL.
  10. gcvmom

    gcvmom Here we go again!

    Does he have any idea why he's not hungry? Does he say why he's refusing the things he usually liked before (any new fears/worries/paranoia)? Any chance it IS tied to mood issues? How is his mental status otherwise? I don't remember, was he on Remicaid at one point?

    I know you are on top of it like no one else could be -- I'd be freaking out a bit, too. Like I said before, I hope it's not serious.
  11. gcvmom

    gcvmom Here we go again!

    The thing about malignancies, I would expect there to be other signs along with weight loss, especially fever, night sweats, abdominal pain (espec. if liver or spleen are involved). I don't know how common it is to just have weight loss as the primary presenting symptom.
  12. Steely

    Steely Active Member

    Your sig says he takes medications for other health issues. Does he have other health problems that he struggles with?
  13. seriously

    seriously New Member

    He's been having unexplained episodes of chills for a least 3 months and generally feeling cold no matter how many layers he wears. But no apparent fevers. He was looking forward to camp so much - yet he barely participated in the activities because he said he was so tired. He's been having more nausea lately but nothing really bad. He was on Humira for about 2 years and on 6-MP for the first year and then Methotrexate for the 2nd year. He's only on MTX now.

    Yes, Steely, he has several other health issues. The main one is Crohn's and he has been on immune suppressing medications of varying power for several years now. He's already at increased risk of lymphoma because of the Crohn's diagnosis. The immune suppressing medications increase this risk a tiny amount in adults but there isn't the data out there to really do a good job assessing the risk of these medications to our kids.
  14. gcvmom

    gcvmom Here we go again!

    Well admittedly I had to google the acronym for the T-cell lymphoma you posted, and while I knew there was an issue with the anti-TNF drugs, I was NOT aware of this latest warning from the FDA:

    And you know, my difficult child 1 has been on Imuran/azathioprine since nearly day 1 (and 6-MP for a short time in the beginning) with his diagnosis.

    The chills could be from low blood sugar if he's not eating. But it could also be a low-grade fever. Do you check his temperature very often? When difficult child 1 had the low-grade fevers they would be there for part of a day, and then not again for a few more days. Maybe check his a couple times a day for a few days and see what you get?

    I wonder if any of the new psychiatric medications he's started are causing any of the GI issues?

    Sigh. As if you haven't had enough junk to deal with, huh? Unbelieveable. Please let us all know how the appointment with the pediatrician goes... and maybe be a squeaky wheel with the GI for a cancellation just in case!

  15. seriously

    seriously New Member

    Thanks Jean.

    pediatrician GI only does clinic twice a month last I heard so that IS the next clinic. Guess that's part of what has me biting my nails.

    We've actually reduced his medications quite a lot and I truly don't think it's a psychiatric medication side effect.

    I have seen the warnings about the t-cell lymphoma and did some research a couple months ago for DPers.

    So I will hope that his liver is just fine tomorrow and that this is all some temporary diet fad he has neglected to disclose to his intrusive mother.
  16. gcvmom

    gcvmom Here we go again!

    I'll be thinking of you both tomorrow! (difficult child 1 goes in for his quarterly GI check-in on Thursday).
  17. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Adding in my prayers and good thoughts!
  18. seriously

    seriously New Member

    Well just got a series of e-mails from pediatrician GI. Apparently they are NOT all excited as their previous e-mails suggested. It would have been nice if that had been made clear to me at the start.

    They want labs but they're like - well if he's not eating then of course he's losing weight. He was heavy before now he's "just" getting proportional.

    Nothing about - gee I wonder why he's NOT eating?

    Sheesh. doctors.
  19. gcvmom

    gcvmom Here we go again!

    Have you been to see the regular pediatrician yet today for labs?

    Have you considered putting in a call to psychiatrist to get their perspective?
  20. Shari

    Shari IsItFridayYet?

    Getting back to proportion and losing a significant portion if your body weight in a month are not exactly the same in my book.
    But who am I and what do I know, right?