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Child exhausted & very thirsty after short exertion

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Marlène, Feb 16, 2013.

  1. Marlène

    Marlène Senior Member

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    Edegem, Belgium
    My youngest child (8) always cries after a physical effort like running. He is exhausted and very upset but without tears.
    He always complains about extreme thirst too after short power efforts (just running for 2 minutes). He will drink three times as much as usual then.

    He is taller and stronger than most of his friends, the athletic type. He can play for hours in the park with friends as long as it doesn't involve active games. He's practices judo once a week but I have to give him Q10 before otherwise he feels sick the rest of the day.

    Since he was born he has trouble sleeping, tummy pain, regular headaches, low body temperature.

    A few weeks ago he collapsed out of the blue, vomited for hours. We thought it was some kind of virus. A few hours later he was unconscious and a doctor gave him an injection.

    Does anybody recognize these symptoms or do you think it is ME as well? I became ill when I was pregnant.

    All his blood results came back normal ...
  2. snowathlete

    snowathlete

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    Sorry to hear Marlene. I don't really have an answer I'm afraid, only to say that before I became sick I would have terrible thirst like that after exercise - more than would be normal I think.
    When you say his bloods came back normal what tests were they? Standard or more specific to ME type tests?
  3. Shell

    Shell Senior Member

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    Oh Marlene, I'm sorry. It's such a worry when we have kids.
    Did the doc check his blood sugars and keytones? Symptoms of type 1 diabetes include thirst, exhaustion, headache and just feeling utterly naff. (my oldest has T1D). If it's that it's treatable.

    I hope he can get some proper tests.
    taniaaust1, snowathlete and Valentijn like this.
  4. SickOfSickness

    SickOfSickness Senior Member

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    I think there is a strong genetic link and he probably has a higher chance of having ME/CFS someday :( But I think most people have a chance to avoid ME/CFS taking over their life if they are careful in the early days. What I mean is knowing is half the battle. For most of us on this forum, if we knew that our symptoms were the start of ME/CFS, we could have lowered our stress levels, taken supplements, and not done as much physical activity. Instead most of us tried to push through. I think your son should not push himself. He knows when it's too much for him, he gets those feelings. Running for 2 minutes is too much for him.
    maryb and snowathlete like this.
  5. Marlène

    Marlène Senior Member

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    Thanks for pointing out the diabetes. It was on my mind as well.Sugar was not checked. Most of regular blood tests are done like blood cells, thyroid, auto-immunity, vit B12, viruses, lyme, parasites, ... Only pfeifer was was slightly positive but that does not explain the symptoms he has since he is a baby.

    I have lupus-like symptoms, cannot stand the sunlight at all. Does anyone know something about or have experience with porphyria?
  6. Marlène

    Marlène Senior Member

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    Edegem, Belgium
    I do give him extra vitamins, minerals as well as Q10 when needed. He stopped eating gluten about 2 years ago and his daily fatigue is much better already. The pain in his belly is much better now unless he eats some bread or cookies again. We are very careful but of course, doctors and relatives think I'm too worried.

    My best friend (a social worker for kids) went playing with yesterday when it happened again. This time she realized it is something that happens every time he makes an effort. She urged me to see a doctor because she was worried. Needless to say I already did countless times.
  7. adreno

    adreno 3% neanderthal

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    Extreme thirst is usually connected to electrolyte imbalances. Try an electrolyte drink for him when he do sports. I would also check hormone levels and kidney function. Low aldosterone or vasopressin for example, can cause electrolyte issues. Diabetes insipidus is an example of this.
    Nielk likes this.
  8. WillowJ

    WillowJ Senior Member

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    Crying without tears would mean either
    1) dehydration (if he can make tears at other times) or
    2) if he cannot make tears at all (whether crying, something in his eye, whatever): dry eye (sicca syndrome, etc.)

    Either way, he should be checked by a doctor. These things could go with ME/CFS, but they could be signs of something else.
  9. WillowJ

    WillowJ Senior Member

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    I see you have been. Ask for a referral to a rheumatologist or geneticist. Try to find a really good one.
  10. Marlène

    Marlène Senior Member

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    He is indeed 'addicted' to it. Whenever we come in a shop, it is the first thing he asks for. He does not even want a candy.
  11. Marlène

    Marlène Senior Member

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    I had a appointment at De Meirleir yesterday. He says it is probably bartonella. Since I have a very red skin in the face and chest, it is a sign of overvascularisation.
    Bartonella prevents your veins to adapt to a physical effort. That's probably why my little boy collapses after a strong physical effort.

    Bartonella is difficult to detect he says since it cells divide only once a month. There are many bartonella species but only two can be detected with conventional methods. I tested positive in 2008 but negative since so my doctors and I thought it was gone.

    DML collaborates with a lab to check for all species via a PCR test in the DNA of the blood. In 5 weeks we'll have the results. If it is positive, I'll have my 3 children tested as well. Two are sick and one is sleeping up to 14 hours a day with night sweats and pain in his feet. Also a sign of bartonella.

    Other signs of bartonella: nightmares, pain in the shins, anxiousness, some people have stretch marks, ...

    The test costed me 180 + 85 euro in total.
    taniaaust1 likes this.
  12. snowathlete

    snowathlete

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    Wow, that's great that KDM might be able to help you get to the bottom of it. I'm being tested for bartonella too and interestingly got stretch marks on my back years ago. GP told me it was nothing. I also got pain in the shins - so bad in the end that I had surgery - didn't make it better. My wife also pointed out a few times when after exercise I collapsed in a heap. Great that we are both seeing someone so experienced and knows to look for this stuff. I really hope he gets to the bottom of it for you and your children!
  13. Marlène

    Marlène Senior Member

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    Thank you snowathlete. Wish you all the best too.
  14. merylg

    merylg Senior Member

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    http://ghr.nlm.nih.gov/condition/neurohypophyseal-diabetes-insipidus

    I think this explains it well. I'm experiencing this excessive thirst. Whether it is genetic or acquired in my case, I have yet to find out. I know that Richvank alerted me to this. I checked my output over 24 hrs & he said it was diabetes insipidus...but when I mentioned it to my Endocrinologist she dismissed it as still in normal range...so I was confused. Also I asked to have ADH level measured & my Endocrinologist said that testing the levels of ADH was not going to give meaningful information... :/ or it was difficult to measure...or something like that...

    This overnight dehydration, especially, may explain my eyeballs sometimes shrinking...which to date NO opthalmologist has yet been able to explain. Add to this the bladder irritant effects of tannins etc in tea & dehydrating effects of caffeine...
    My Rheumatologist was one who suspected some hormonal issue...but my Endocrinologist never found much except slightly elevated Parathyroid Hormone, needing increased Calcium intake in food...& adequate intake Vit D3.
  15. Marlène

    Marlène Senior Member

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    Thank you merylg, do you have it all the time or only when you do an effort?
  16. merylg

    merylg Senior Member

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    Haven't been able to exert much,,,been bedridden a lot BUT...
    That's a good question!!! I'm not sure. I will see tomorrow as I had a big day out today...driving to Genetic Clinic, stressful appointment, then lunch out... then Opthalmology clinic...then stressful drive home 1 hr in peak traffic though 40 kph school zones....feel a bit dehydrated & have headache...LOL not surprised.

    Some supplements did make it worse. I've been taking water with me to sip all the time. Maybe I need electrolyte drink instead???
    Marlène likes this.
  17. lnester7

    lnester7 Seven

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    I feel horrible in the sun, my head feeling buzz or whatever I have, gets worse in the sun (since I remember), the explanation I got is because sun exacerbates Herpes viruses (I have high hh6v) I am not sure that is why but is what I was told in my case.
  18. Marlène

    Marlène Senior Member

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    Very interesting! How did they test HHV-6? Do you occasionally have dizzy spells too when your stomach hurts?
  19. lnester7

    lnester7 Seven

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    I got tested for all herpes Igm and Iggs by CFS doctor (even though the GP could of have, this is very standard test). Dizzy for me comes from OI. I have read on the dinet forum where people get stomach pain and dizzy at the same time but to me only happens when I black out (or close to) otherwise no stomach pain.

    To be honest I was wondering the same about the sun, because POTs people get exacerbated too. So I was wondering if mine comes from OI or the hh6v, or maybe I react so strongly because of both. I get head malaise, Flue like feeling. Like I need to get off the sun or I will die, then I just feel sick for hours/days. I get the same type of crash I would get if I would run, but more immediate.
  20. Marlène

    Marlène Senior Member

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    Intriguing, I have this sun intolerance just like you long before I got sick. Maybe it is my weak spot and an extra infection just escalated it to ME. I'll see if I can have it tested as well. In a few weeks I get the results if I have bartonella. After all I have read and having compared it to my results, there's a very big chance this is it.

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