Discussions By Condition: I cannot get a diagnosis.

Ideas needed please

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: kidsmom
  • May 24, 2010
  • 04:40 PM

My 16 yr old daughter, who has moderately severe Tourette Syndrome, which developed to this severity over the past 2 years, also has anxiety/depression. She also has been diagnosed with GERD.

Over the past several months she has been developing what started out as off and on lightheadedness as well as "foggy brain" both of which have increased over that time. Her memory and concentration is very bad right now, and at times has been finding it difficult to "find the words" to say what she needs to say. She feels "weak and off-balance" as well. She also told me that her "head feels full" and that she has developed a headache, possibly because of the now constant (when she moves) lightheadeness, which ranges from mild to moderate and is dull and achy. She also said that sometimes she gets this feeling of part of her "brain feels cold". She kept these things from me until fairly recently when she decided that they "weren't going to go away" and the symptoms began to scare her. The MRI that she had approximately 3 weeks ago came back normal. She was also checked for vitamin B12 deficiencies as well as lyme disease, also coming back normal. I know that her neuro will be running more tests to find out what IS going on, but I'd love to find some ideas of what would be good to look for. There is some obvious concern on my end.

She was on a variety of medications over the past couple of years, to deal with the anxiety and also in an attempt to control the tics, but is currently on none of the meds that she was on when these symptoms began (celexa, and later Orap, then Clonidine). She is currently on Zoloft for the anxiety/depression and Intuniv (long acting version of Guanfacine) for the tics. She also takes a multi-vitamin. She takes Zantac 150 as well, for the GERD, which is well-controlled. She did try Tylenol for the headaches, and at other times tried Advil, to no avail.

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  • My 16 yr old daughter, who has moderately severe Tourette Syndrome, which developed to this severity over the past 2 years, also has anxiety/depression. She also has been diagnosed with GERD. Over the past several months she has been developing what started out as off and on lightheadedness as well as "foggy brain" both of which have increased over that time. Her memory and concentration is very bad right now, and at times has been finding it difficult to "find the words" to say what she needs to say. She feels "weak and off-balance" as well. She also told me that her "head feels full" and that she has developed a headache, possibly because of the now constant (when she moves) lightheadeness, which ranges from mild to moderate and is dull and achy. She also said that sometimes she gets this feeling of part of her "brain feels cold". She kept these things from me until fairly recently when she decided that they "weren't going to go away" and the symptoms began to scare her. The MRI that she had approximately 3 weeks ago came back normal. She was also checked for vitamin B12 deficiencies as well as lyme disease, also coming back normal. I know that her neuro will be running more tests to find out what IS going on, but I'd love to find some ideas of what would be good to look for. There is some obvious concern on my end. She was on a variety of medications over the past couple of years, to deal with the anxiety and also in an attempt to control the tics, but is currently on none of the meds that she was on when these symptoms began (celexa, and later Orap, then Clonidine). She is currently on Zoloft for the anxiety/depression and Intuniv (long acting version of Guanfacine) for the tics. She also takes a multi-vitamin. She takes Zantac 150 as well, for the GERD, which is well-controlled. She did try Tylenol for the headaches, and at other times tried Advil, to no avail. While I'm not sure about Tourette's syndrome, I do know there is a link between something called leaky gut syndrome and aspergers/autism. From the symptoms your daughter is saying she's experiencing, it sounds like how I felt before I found out I'm gluten intolerant. Gluten intolerance causes the brain fog, heavy-headed, can't-find-the-right-words feeling she's talking about. I wish you the best. Try an elimination diet. This could change her life for the better!
    awakeningspirit 10 Replies Flag this Response
  • It could be Postural orthostatic tachycardia syndrome (POTS) especially if she has other symptoms such as heat intollerance, thirst or tiredness with it. Has she noticed she's been drinking more ever since she developed this issue?. Is she worst when she gets hot? Two main symptoms of POTS are headaches and dizziness/light headed and this illness more common in females and often starts in teens (and then improves in ones 20's). There's a episode of "Mystery diagnoses" on youtube on someone who had a severe case of POTS if you do a search on youtube for it. (it has three parts there). i suggest you make sure this illness isnt what is causing your daughters issues. (if so. there are things which can be done to help it)
    taniaaust1 2267 Replies Flag this Response
  • While I'm not sure about Tourette's syndrome, I do know there is a link between something called leaky gut syndrome and aspergers/autism. From the symptoms your daughter is saying she's experiencing, it sounds like how I felt before I found out I'm gluten intolerant. Gluten intolerance causes the brain fog, heavy-headed, can't-find-the-right-words feeling she's talking about. I wish you the best. Try an elimination diet. This could change her life for the better!I never realized that gluten intolerance could cause such symptoms. I'll definitely be trying this. Thank you.In the meantime, while changing her diet over, we'll still be searching for other possible causes too.I appreciate the answers thus far and will be bringing them, and any others that come up, up to her doctor when we see him again in a week
    kidsmom 3 Replies Flag this Response
  • It could be Postural orthostatic tachycardia syndrome (POTS) especially if she has other symptoms such as heat intollerance, thirst or tiredness with it. Has she noticed she's been drinking more ever since she developed this issue?. Is she worst when she gets hot? Two main symptoms of POTS are headaches and dizziness/light headed and this illness more common in females and often starts in teens (and then improves in ones 20's). There's a episode of "Mystery diagnoses" on youtube on someone who had a severe case of POTS if you do a search on youtube for it. (it has three parts there). i suggest you make sure this illness isnt what is causing your daughters issues. (if so. there are things which can be done to help it)I'll look this video up as well as finding out more about this POTS.One of the things she noticed is that the lightheadedness becomes most severe when she moves from a darker area to one with more lighting,(or vice versa) especially from a darker room (like her bedroom) to the living room, which is usually filled with sunlight during the afternoon. I thought this may help with ideas.Again, I appreciate the answers I'm getting.
    kidsmom 3 Replies Flag this Response
  • I'll look this video up as well as finding out more about this POTS. One of the things she noticed is that the lightheadedness becomes most severe when she moves from a darker area to one with more lighting,(or vice versa) . That would fit with it possibly being POTS. The act of getting up and standing and moving to another place.. the postural changes esp of going from sitting or laying to standing.. triggers off POTS worst. Some POTS people only get the symptoms when standing while others can have the POTS dizziness etc most of the time. a good site for info on this issue is http://www.dinet.org/pots_an_overview.htm Also if you look up POTS on wikipedia there is a lot of good info there too..... correction needed in my last post.. shouldnt have said POTS improves in ones 20's.. as that may not happen.. was just meant to say thou that is just "often" improves then in ones who get it in teens, from what ive read.
    taniaaust1 2267 Replies Flag this Response
  • Ok, my daughter saw the doctor today concerning her symptoms. Her neuro recommended that she see a cardiologist about them so I got the name of one from her primary and the appointment was today.Kim was diagnosed as having a "small heart" when taking her for a checkup to diagnose the dizziness and all that she had been dealing with for the past little while.The doctor ran an EKG while having Kim laying on an exam table, which came out "normal". Once that was done, and actually before it was done, she mentioned that her feeling is that Kim isn't drinking enough water and that that was the reason for her heart being "smaller than normal". She said that she feels that if Kim drank more water all of the symptoms that I described in my first post will fade out and go away over time. When asked about followup appointments the dr said "no need, she'll be fine".My feeling is that she (the dr.) is basically blowing off my daughters symptoms as something that she can't be bothered with diagnosing but I need to know.. could this be a possibility? I'm not one to subject my kid to all sorts of unneeded tests and such, but in this case, doing an EKG and an xray and nothing else seems to be less than what was needed for a real solid diagnosis, especially since these symptoms can be caused by many different things.Kim does drink a fair amount of real fruit juices, water, gatorade, and things like that, but tends to rarely drink soda, koolaid, and other sugary type drinks. My feeling is that these symptoms are too severe to actually be signs of not drinking enough fluids as she shows zero signs of dehydration.I figure that I'm going to give the water idea a chance, see if there is an improvement over the course of the next 3-4 weeks (she said we should see improvement within a week) then, if there is none, will be contacting her pediatrician to get a name of a different doctor as I don't feel that she put any real effort into making sure there was no underlying issue before coming up with the diagnosis she did.What are your thoughts on this? Could she be right?
    kidsmom 3 Replies Flag this Response
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