Discussions By Condition: I cannot get a diagnosis.

Please Help, 14 Year Old Son With Many Symptoms

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: janann1206
  • March 19, 2009
  • 11:05 PM

I need help please, anybody. I have a 14 year old son who had 2 weeks of severe headaches, nausea, neck pain, dizziness back in January which resulted in a 5 day hospital stay. They did all kinds of testing and could not find anything (thought it was menengitis) on the 13 1/2 day, they seemed to go away. Several days later, they returned here and there but with a new symptom of ear pain. We have had good days and bad days.

Well yesterday he started back again except the dizziness has gotten worse and today he actually passed out in school. He is also really pale. He has lost 8 lbs in the last month and he has been eating very well. Back in January they ran all kinds of tests, did a LP, an MRI and CT Scan of the head and all were ok. The only thing was his Neutrophils were low. I was told that they were not low enough to cause concern.

He eats well, he is active. I took him to Children's Memorial in Chicago and they could not find what the issue was so they said well maybe it was Fibromyalgia and referred me to a Pain Clinic. The Dr there said that their diagnoses was incorrect and he thought it was something else. When he walks, he stumbles all over the place. I need some help please.

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  • I need help please, anybody. I have a 14 year old son who had 2 weeks of severe headaches, nausea, neck pain, dizziness back in January which resulted in a 5 day hospital stay. They did all kinds of testing and could not find anything (thought it was menengitis) on the 13 1/2 day, they seemed to go away. Several days later, they returned here and there but with a new symptom of ear pain. We have had good days and bad days. Well yesterday he started back again except the dizziness has gotten worse and today he actually passed out in school. He is also really pale. He has lost 8 lbs in the last month and he has been eating very well. Back in January they ran all kinds of tests, did a LP, an MRI and CT Scan of the head and all were ok. The only thing was his Neutrophils were low. I was told that they were not low enough to cause concern. He eats well, he is active. I took him to Children's Memorial in Chicago and they could not find what the issue was so they said well maybe it was Fibromyalgia and referred me to a Pain Clinic. The Dr there said that their diagnoses was incorrect and he thought it was something else. When he walks, he stumbles all over the place. I need some help please. Does he have sinus pressure and pain on his forehead? Is he congested? Does he have a cough? Does he still have the neck pain? Did he have a fever at any time? Does he get seasonal allergies? Best wishesDOM
    acuann 3080 Replies Flag this Response
  • No sinus pressure. Forgot to mention that he went to the ENT today and he found all well with his Ears, Nose and Throat. No allergies that we are aware of. Seems to happen most often after any physical activity. He has gym first period and usually by 2nd period he is feeling bad. Ears feel full and hearing is muffled when this happens.
    janann1206 5 Replies Flag this Response
  • That is very troubling that all the tests have been normal. Has he been tested for Lyme disease? This does not sound like fibro to me...is your son on any medications at all? There is a Dr. Cottle on this site who is very knowledgeable. Hopefully he will respond to you soon. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • It's obviously something at his school - like I suggested, a cell phone tower. But I'm happy he has no sinus pressure.That is what I thought too except he plays soccer outside of school for a premier soccer club and it happens then too and that is in another state. This is very troubling. to us.Yes, he was tested for Lyme, twice because he was bitten by a tick 2 years ago. Both were negative. Back in October he had both his appendix and gallbladder removed. He did test positive for mono both in October and January BUT all drs say that it is not active. They said you can have a positive mono spot test for up to 1 year after the virus was active. My niece had a condition when she was 17 called Neurocardiogenic Syndrome. She passed out a few times and they did the tilt test to find her diagnosis. My son's real father died in 2007 at the age of 33 of Peritoneal Mesothelioma of the stomach with no exposure to Asbestos. When I mention this to the Drs, they seem uninterested. Not sure if either of these are relevant but I thought I would mention them.He is not on any medication except for an occasional tylenol for headache.
    janann1206 5 Replies Flag this Response
  • That is very troubling that all the tests have been normal. Has he been tested for Lyme disease? This does not sound like fibro to me...is your son on any medications at all? There is a Dr. Cottle on this site who is very knowledgeable. Hopefully he will respond to you soon. Best wishesDOMYes, he was tested for Lyme, twice because he was bitten by a tick 2 years ago. Both were negative. Back in October he had both his appendix and gallbladder removed. He did test positive for mono both in October and January BUT all drs say that it is not active. They said you can have a positive mono spot test for up to 1 year after the virus was active. My niece had a condition when she was 17 called Neurocardiogenic Syndrome. She passed out a few times and they did the tilt test to find her diagnosis. My son's real father died in 2007 at the age of 33 of Peritoneal Mesothelioma of the stomach with no exposure to Asbestos. When I mention this to the Drs, they seem uninterested. Not sure if either of these are relevant but I thought I would mention them.
    janann1206 5 Replies Flag this Response
  • In his last blood tests, his Neutrophils were low and his Lymphocytes were high.
    janann1206 5 Replies Flag this Response
  • In his last blood tests, his Neutrophils were low and his Lymphocytes were high. Did they test him for any autoimune diseases? Is there any other symptoms. Even the smallest one counts. For example: poor concentration, joint or musscle pain, fever, lost appetite, or pain in other body parts? hope he feels better.
    lizitrona 6 Replies Flag this Response
  • No sinus pressure. Forgot to mention that he went to the ENT today and he found all well with his Ears, Nose and Throat. No allergies that we are aware of. Seems to happen most often after any physical activity. He has gym first period and usually by 2nd period he is feeling bad. Ears feel full and hearing is muffled when this happens. The fact that physical activity is setting off these specific range/group of symptoms" point to it probably being a case of chronic fatigue immunity dysfunction syndrome (CFIDS). In this way I personally think CFIDS presents usually quite distinct. CFIDS is triggered off more by physical activity or any body stressors eg anything from mental emotional stresses to other body stressors eg vaccinations etc etc. Be aware that the school gym sessions could actually end up putting your son into a possible permanent worsened state, it's possible to worsen from CFIDS when triggered and not recover!. He needs to STOP doing those gym sessions now as they are making him sicker. You need to take him to someone who specialises in this illness for a diagnoses (or to get it ruled out). The best way to recover from CFIDS is for a diagnoses as soon as possible then to start listening to ones body and not worsening the CFIDS by rest and pacing. In children CFIDS appears equally in males and females and is the most common reason for long term school absentism. (It is possible that your son could worsen and actually not be able to attend school no more at all.. hence please listen to me when i say to stop those gym sessions until he does get a diagnoses which is correct and covers all his symptoms). The good news is that if he does have this illness... that being a child with it (rather than an adult) he has a much better chance of recovery and within a couple of years may be fully recovered. check out http://wwcoco.com/cfids/bernesx.html for a very good list of CFIDS symptoms and how often (according to studies) they appear in this illness.
    taniaaust1 2267 Replies Flag this Response
  • I need help please, anybody. I have a 14 year old son who had 2 weeks of severe headaches, nausea, neck pain, dizziness back in January which resulted in a 5 day hospital stay. They did all kinds of testing and could not find anything (thought it was menengitis) on the 13 1/2 day, they seemed to go away. Several days later, they returned here and there but with a new symptom of ear pain. We have had good days and bad days. Well yesterday he started back again except the dizziness has gotten worse and today he actually passed out in school. He is also really pale. He has lost 8 lbs in the last month and he has been eating very well. Back in January they ran all kinds of tests, did a LP, an MRI and CT Scan of the head and all were ok. The only thing was his Neutrophils were low. I was told that they were not low enough to cause concern. He eats well, he is active. I took him to Children's Memorial in Chicago and they could not find what the issue was so they said well maybe it was Fibromyalgia and referred me to a Pain Clinic. The Dr there said that their diagnoses was incorrect and he thought it was something else. When he walks, he stumbles all over the place. I need some help please. I would of suggested said your son may have postural tachycardia syndrome (POTS) is it wasnt for the sore neck and now the ear pain.. (POTS can all those other symptoms you said). These two other symptoms, are the reason why Ive said CFIDS as these do appear in CFIDS with all his other symptoms. Be aware thou that POTS DOES often coexist with CFIDS (well over half with CFIDS have POTS as just ONE of the CFIDS symptoms). POTS is picked up by tilt table testing. It isnt normal for one to pass out completely in CFIDS unless they have to commonly coexisting POTS with it as well. (i myself have both of these and like your son pass out at times)............ I'll try to explain how i think the doctors confused your son with having fibromyalgia (FM) which clearly i think he doesnt "currently" have!! (they couldnt say he does with just the symptoms you said.. and that diagnoses shouldnt have been given in his case without the FM trigger points being tested). CFIDS patients .. up to 75% of us with CFIDS get or end up getting fibromyaligia too as a symptom of the CFIDS...so it is possible he may find that he actually does end up with FM too. Cause of the great overlap of these two illnesses.. MANY doctors actually confuse these two illnesses together as being the same. They are not the Same thou. One can have FM without CFIDS and one can have CFIDS without FM. But obviously this is probably what the doctor has done and wrongly thinks they are the same illness hence giving your son a FM diagnoses when he clearly dont have FM. I start researching both POTS and CFIDS (to which i think he has both, with the POTS being part of his CFIDS). http://www.youtube.com/watch?v=NN3PB6N6oGY (mystery diagnoses eposide one on POTS) , http://www.youtube.com/watch?v=I40-r3RpFjs&feature=related (eposide two) http://www.youtube.com/watch?v=PHydjGdg4XQ&feature=related (part three). For info on CFIDS a good site is www.immunesupport.combest luck
    taniaaust1 2267 Replies Flag this Response
  • taniaaust1:Thank you for all the info. It is funny you mention POTS because it is the same thing as Neurocardiogenic Syncope. My niece had that as a teenager and that was one thing I am trying to get a diagnoses on. Went to the DR again today and she sent him for an ECHO, EKG and he will have a Holter Monitor over the weekend. She refereed us to a Pediatric Cardiologist and we will be seeing him on Thursday. I am requesting a Tilt Table Test. The neck pain is gone and I think it was from a soccer injury which according to studies done can cause POTS as well as the MONO he had back a few months ago. While I do not have a firm diagnoses, this gives me some hope and I will be treating him as if he has it until I receive confirmation either way (increase in water intake, more salt, small frequent meals, etc). The headache today was so severe and when I asked the DR for something other then the Naproxen or Tylenol 3, she said she didn't have anything. When we were at Children's and they diagnosed the Fibro, they gave me an RX for Lyrica and guess what, it has shown to help relieve symptoms in POTS patients. I gave him one and he said while the symptoms are still there, they have lessened. I think we will try it for a few days (as requested by the Neurologist that saw us) and we will see what happens. Thanks Again!!!!
    janann1206 5 Replies Flag this Response
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