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    Old 08-30-2002, 06:22 PM   #1
    George110
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    Question Why is my child sick?

    Hi everybody,

    My son is 8 years old. He gets sick every time he goes to school for 3-6 days in a row. This has been going on for the last 3 years - ever since he started going to school. When not sick, he is a lively, active and very happy child.

    We went to several doctors and specialists and we have collected a huge file of blood tests, allergy tests, etc. He has missed so many school days that the authorities started to intervene.

    Every doctor we go to examines the child, finds nothing, and dismisses us as a bizzare case with nothing behind it or as over protective parents. Some hinted at psychological reasons.

    I do not beleive in the psychological theory for many reasons. The boy is very happy to go to school. He has friends there. In spite of the low attendance record, his grades are above average. His teachers testify that he is a popular and intelligent child and that he fits in very well. His illness is not typically in the mornings before school, but after a few days of school, sometimes coinciding with weekends and holidays.

    During the two month long summer holidays he is completely healthy.

    The symptoms almost invariably look like viral infections with sore throat, a few days of fever (usually around 38.5 degrees celsius, up to 39.3), running nose, difficulty breathing (this one keeps him awake many nights). He suffers a great deal during these illnesses. He loses interest in everything and looks really bad. Every episode by itself is not life threatening or out of the normal sicknesses children have, but the combind effect of the series of illnesses is a real problem. He lost more than 2 pounds during first grade and spent a lot less time learning researching the world around him an developing than he should have.

    During a few months in the past year (2nd grade) we tried to send him to school only two days a week. He got sick only once during this period. We then tried to go up to three days a week and he immediately got sick again.

    We went through screening tests for allergy a few times. No allergy was detected.

    All blood tests look normal, except for IgA levels that are always slighly below the normal range. The expert we went to said this is meaningless and cannot cause problems. Ferritin levels are also below normal.

    When I reflect on this, I remember that when he was much younger, he didn't get sick a lot, but when he did get sick, it went on much longer than normal. He also always looks quite pale, but, as I said, the blood tests (iron levels) are normal (on the low end) except for low ferritin. The family doctor said we should treat this with an iron rich diet, but there is no need to give him iron pills.

    The doctor disbelief has reached ridiculous heights lately. Our family doctor, for one, says he has no record of actually seeing the child when he was sick (this is not true: we have many sick leaves with his signature to prove it...). He wants us to rush to him every time this happens without giving any aspirin so that he can take the temperature himself, and continue sending the boy to school every day for at least a few months, "and then we will see". When we asked how we can do that if the fever starts rising in the evening, as it usually does, after school (and clinic) hours, or during the weekend, he just shrugged and said he does not know.

    We feel so helpless. We don't know who else to turn to. Not only we see the child suffering and being damaged by this, we also have to cope with a health system that does not believe us and even blames us.

    Does anybody have any similar experience? Any ideas what this could be?



    [This message has been edited by George110 (edited 09-04-2002).]

     
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    Old 08-30-2002, 10:10 PM   #2
    54321
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    did you rule chronic fatigue syndrome out in the end? Cos it sounds v.like it, i followed the same pattern initially, the bit that makes it stand out to me is the getting sick doing 3 days but not 2, with CFS (Fatigue does not have to be the main symtpom) often when you over do it (like his 3 days) it leaves you end up crashing out with flu/cold like symtpoms, then some people once they have spent a few days/weeks being sick like that they feel better (but not 100%) and go back and repeat the cycle. A suggestion for his schooling from me (who does have CFS) would be is it possible for him instead of going 2 full days to do 3 or 4 half days, just mornings or afternoons depending on if he has a better time of the day,

    If you want more info on CFS (known as ME in the uk) then see [url="http://www.ayme.org.uk"]www.ayme.org.uk[/url]


     
    Old 08-30-2002, 11:26 PM   #3
    George110
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    We have only started reading about CFS and we are not sure what to think,
    because the CFS sites we found do not mention 38.5+ C fever and running
    nose as symptoms (they describe "low grade fever" and "flu-like feeling"),
    and they always list fatigue at the top of the list.

    Thanks a lot for the input. We will go on reading.

     
    Old 08-31-2002, 10:11 AM   #4
    Jaytor
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    Environmental illnesses e.g. 'sick building syndrome' or sensitivity to environmental toxins are other possibilities to research.

    Here's a link to the CDC site:
    [url="http://www.cdc.gov/health/default.htm"]http://www.cdc.gov/health/default.htm[/url]

    If you can, try to get the school building and grounds inspected.



     
    Old 08-31-2002, 12:48 PM   #5
    54321
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    hi george, fevers are common with CFS, as it makes you more vunrable to infections + it effects the hyperthamlous (bad spelling i know), which gives you loads of symtpoms like fluctating temperature, some of my friends with it run a fever when ever they over do it. I know fatigue is always at the top of the list but not everyone with CFS/ME suffers with it espeicaly at the higher ability levles
    A good site with loads of people on it is [url="http://www.brainfog.org"]www.brainfog.org[/url]

     
    Old 08-31-2002, 03:06 PM   #6
    George110
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    We never thought of environmental illnesses, but we'll look at that too,
    even though I doubt it. The exact same symptoms were present at kindergarten,
    a completely different kind of building in a completely different part of
    town. Thanks, Jay!

    About the fatigue, well, I cannot say the boy does not exprerience it.
    He does sleep much longer than normal when he has the symptoms. Coming
    to think of it, he always sleeps a lot. There is one more phenomenon that
    we only thought of today: he always sleeps sitting up in bed. Even if he
    falls asleep lying down, we see him some time later sleeping in a sitting
    position. When we asked him why he does that, he said it is because he gets
    a tingling sensation all over his body if he lies down. I don't know if
    this is significant, but I can't help connecting this with the circulation
    problems I saw mentioned in recent research.

    Anyway, I suppose my next step is to locate doctors specializing in CSF
    in my area and try to talk to them.

    Many thanks, 54321!

    - Much encouraged G.


     
    Old 09-02-2002, 09:12 PM   #7
    Kathy Boss
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    George,Do you live in an area where ticks are common? Have you ever heard of Lymes Disease? Since you are looking for suggestions please check it out. The tingling feeling is common with LD as is the breathing problems. Even if you are not in a tick known area please just check it out. I just learned today reported cases have been in every state but Montana.

     
    Old 09-03-2002, 08:48 AM   #8
    George110
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    Thanks, Kathy!

    [...pausing to read some Lyme info...]

    We do have ticks around here. We also have dogs. The symptoms, however, don't seem to match. From what I read, there is a theory that CFS and Lyme are connected, and maybe even the same disease, so I would expect a CFS Dr to know about Lyme, right?
    Anyway, we'll keep this possibility in mind when consulting with our next Dr.

     
    Old 09-03-2002, 10:42 PM   #9
    Kathy Boss
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    George, The symptoms is what caught my eye. General symptoms are what you listed along with loss of sleep. April thru July for most places are the highest risk for transmission. Usually a person can go for several days and then hit's their down time because of the bateria. There is also a reproduction cycle of the spirochete. When you are trying to do normal daily things it takes everything you have to get thru the normal school or work week. And, when the weekend or any other day you have to crash you do it. Sometimes in the middle of the day during the week it can hit if you went the weekend without enough rest. Only a Lymes Specialist can diagnosis Lymes. And, as far as I know only one lab is equiped to do the blood test for LD which is in CA. A blood test can also come up as a false negetive. I don't know where you looked for Lymes but please check lymenet. I found out about it from this healthboard when checking under "Rare disorders" On lymenet there are several topics about children and lymes. Good luck to your family.

     
    Old 09-04-2002, 01:36 PM   #10
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    About the sleeping upright and tingling comment:

    This is a really wild possibility - a disequilibrium of the cerebrospinal fluid [CSF] or a problem with the extrapyramidal cortex. There are some other possibilities primarily concerned with balance involving vision [space/motion] perception.

    You might be able to rule out or confirm whether body position is contributing to the problem by charting your child's body position over the course of a few days - e.g. how long does he sit/stand upright at a time? how long does he keep his head completely elevated? how comfortable is it for him to lower his head below his knees/chest? [Don't be too aggressive trying this - as soon as he says he's uncomfortable, stop.]

    Not sure what the specific diagnostic tests might be other than a lumbar puncture [spinal tap] for the CSF and a CT Scan/MRI of the extrapyramidal region of the brain. For these conditions you would need to consult a paediatric neurologist.

    Unfortunately, the above does not address the fevers or other symptoms.

    Good luck,
    Jay

     
    Old 09-05-2002, 10:54 PM   #11
    54321
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    hiya CFS (or ME as its called in england) is an unbrella term, no ones knows exactly what it is, its a term for a collection of symptoms and other illnesses which are very similar like lyme and PVFS (post viral fatigue syndrome) can be diagnosed but also fit under the CFS title.

    Another site for CFS is [url="http://www.brainfog.org"]www.brainfog.org[/url]

     
    Old 09-06-2002, 02:23 PM   #12
    Kamden
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    George 110, I believe your son may be suffering from sick building syndrome. I also developed this and no doctor is going to find the cause, because they are all looking in the wrong place. If you read your own message over again, you have pretty much answered your own question without even realizing it. It says your son started getting sick 3 years ago, when he started school, and is only sick after he goes to school. The source is very obvious to me, { something in his school } Symptoms are known to come on hours later and this is also why he gets worse the longer he spends there. There have been schools, factories, plants closed down for this very reason. The materials used to spray for bugs, strip the floors, any glues, paints, etc. are well known to outgas and cause alot of illnesses such as this. Fatigue , sinus and breathing problems are very common with this because of what he is breathing in, and irritating his lungs. If your son gets better on the weekends, and any school breaks and all summer long, it is something in the school. There are many people who are not affected by things in the environment, and this is why this illness is so hard for others to comprehend, but the ones who are chemically sensitive, suffer quite a bit and get very ill over time if exposed to these things on a daily basis, like me. Because of my chronic exposure, I am now dead tired all the time and have chronic sinus problems. If he is well when not in school, and ill every time he spends a few hours there, I would home school him for now and keep him away from whatever is making him sick. Read up on " sick building syndrome , environmental illness, and chemical sensitivity if you can. There have been shows on TV { Oprah } of whole families getting very ill from renovating their home, and having to move out of it. Good luck, I hope you find the cause and a cure.

    [This message has been edited by Kamden (edited 09-06-2002).]

     
    Old 09-09-2002, 08:52 AM   #13
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    hi to add confusion to what kamdan said, it could me multiple chemical sensativies which is part of CFS. Another reason why he gets sick after school and not during the holidays is cos at school you are doing 7or so hours of activity with no rests where during the holidays your not so active mentaly or maybe physically

     
    Old 09-09-2002, 05:08 PM   #14
    George110
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    Thanks again to all who replied. This is most helpful and encouraging.

    We are compiling a list of possibilities to test later. We gave some thought to each of the possibilities (Lyme, CFS, sick building, ...) and prioritized them according to likelihood. Our current feeling is that CFS is much more likely than the others. We are trying to get in touch with a local CFS expert, but it takes time.
    It is curious to note that we have to educate several doctors about CFS on the way! From our reading this seems to be a common experience for people with rare disorders.

    In the mean time our son got sick again after the first 5 days of school. Again, almost the same symptoms. Again, the doctor found nothing.

    I will let you know what happens when we know more.

    - G.


    [This message has been edited by George110 (edited 09-10-2002).]

     
    Old 09-11-2002, 09:21 AM   #15
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    hi george, it took me 7 years to get a diagnosis it wasn't until i was severly affected they diagnosed it! There is a criteria to diagnose CFS in children, where you have to score certain points, i think its called the oxford CFS criteria, or something like that.

    Have you considered cutting your sons school hours down to half days? or letting him take weds off? I wish i had done that, it may have stopped me relapsing

    Good luck, i hope you get a diagnosis soon

     
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