difficult child's sick for about 6 weeks. Help - long

Discussion in 'General Parenting' started by Kjs, Dec 31, 2008.

  1. Kjs

    Kjs Guest

    Oh I do need help here.

    Headaches have always been an issue. The Topamax was started December 3rd, and our goal was to control headaches. Ct scan, MRA, MRI, 48 hour eeg (I believe I stated 24 hour, but it was 48 hour). That was with pediatric neurologist from childrens hospital. All normal.

    He was on Topamax for about two years and Lamictal about 3 years. Lamictal did wonders for his anger, but Topamax didn't help headaches so he quit that about 18 months ago. Lamictal was stopped as well two years ago he was doing so well.

    This year (freshman year) asked for Lamictal. He knew he was getting angry so much. psychiatrist put him on Lamictal, and at this point we are on his theraputic level.

    difficult child also asked for Focalin. Concerta put him in a foul mood. difficult child took Focalin ONE day. Called from school saying he was so angry, such a bad mood and nothing happened. In a meeting with principal, who was at one time on the board of a pyschiatric hospital asked difficult child to explain how he felt. difficult child said like he was on the edge of a cliff ready to jump. Principal/director, told him if he EVER feels that way to see him. He will leave a meeting and MAKE time to be with him. difficult child never took that again.

    Then, as I wrote before two weeks ago difficult child said he was "out of it, confused, light headed, dizzy, didn't know where he was, couldn't comprehend" he has severe anxiety and feeling like that, caused more worry and he continuously thinks he is dying.

    Spoke to doctors, removed the Topamax. December 19 we removed it.
    Meanwhile, his stomach is bothering him. Throwing up almost every other day. Still putting on a lot of weight very quickly.

    He had a complete physical in November. 7 tubes of blood. All normal.
    except no signs of puberty. Testostorone levels show he is out of infancy and puberty should begin in the next year. (he is now 14)

    His confustion and feeling out of it had gotten a little better but was still present last week. Some days better than others.

    We walk into the hotel, loud, echoy...and he tells me he feels light headed, out of it, like he is going to pass out. I tell him he is fine.

    He seemed to enjoy himself. Except for the last morning. woke me up at 4:30 saying his stomach hurt and felt like throwing up. We walked to the lobby and bought some pepto bisumal. (he has been taking that and malox) Didn't want to swim or anything that day (our last day). Just wanted to come home.

    I was holding his phone while he was on rides and swimming. His text messages, he told someone the first night how he felt and felt like throwing up. Then each day. He didn't tell me that.

    OK...more background. He had ear troubles early on. Tubes by 9 months due to 5 months of ear infections and antibiotic treatment. He would refuse to go to a fast food place because of the buzzing of the french fry machine. When he played sports he KNEW when the buzzer would go off and stop playing to cover his ears. In elementary school (first grade) I was told the sound of the flourescent lights bother him. One classroom had a clock that would get stuck for one minute and buzz...a quiet buzz but it set difficult child off. Then the following year 3rd grade, he told us everything was echoy. When the teacher talked. So, ENT took tonsils out. Seemed to really help. Now... Last year he couldn't hear, ears felt blocked. Went to doctor and he did that test to see if there is fluid in his ears. Test was way....bad. Took to ENT. They did same test. Same results. Did a hearing test. Was fine. ENT Dr. said he had no fluid behind his ears. His estation (sp?) tubes formed a vacuum. He needs to hold his nose and blow to try to keep them open. Spoke with my niece who is an audiologist, and she said estation tube dysfunction ...you cannot do anything.
    WHY can't they put tubes in to open that up??? And since the Topamax has not been taken in ten days and was worse at the Dells, could this be ears?
    Neighbor lady and I were speaking and she thinks so. Even though it happens at home also. So we are in a restaurant. and there was back ground noise, talking...Neighbor had a drink. She looks at him and says, difficult child, how can you hear in here? difficult child looks at here and immediately says "how can you drink in here?" (he was not aware of our conversation) LOL, I almost fell on the floor laughing. She was speechless. Then explained, with all the background noise can he hear. He said yes.

    difficult child and the neighbors family, mom and dad too are very, very close. He is like one of the family. He is comfortable with them and they are comfortable with him. He will talk to mom and dad about anything.

    Just to show you an example of his anxiety. He had a headache at the restaurant. I gave him two advil. Then he asked neighbor if he could taste her strawberry margurita. She said sure. He took a very small sip. Maybe a teaspoon full. Then realized he had taken Advil. He freaked out. Thought he was going to die because he now mixed advil with alcohol. It took about 30 minutes to calm him down.

    So, now back to his stomach. Could this be from all the Advil, excedrin and Tylenol #3? He ALWAYS eats with medication. I explained rebound headaches to him and he hadn't taken any medication for about 4 or 5 days until that night. Why is he feeling so sick? Why is he throwing up?
    by the way..he does eat. Could it be ulcers? Should we take hom off Lamictal?

    When he isn't feeling well, every single ache and pain he thinks he has cancer, a tumor and is going to die. He asks every doctor is he is dying.

    I get tired of hearing this, I get tired of telling him he is alright. But I also realize these pains are real to him. I just don't know where to go at this point. I don't have the money for all the specialists and all the tests. I just do not have the money. Insurance pays 80%. But that leaves a lot left when you have MRI. husband had MRI for the bulging disc. My bill is $985. MY portion. Not to mention the raidologists, ER physicians, the neurologist he see's for epidurals, or for that matter the epidurals.
    difficult child has had so many trips to ER for headaches I am just out of money.

    Please, Please give me advice. So many tests already completed. ALL normal. He had no trouble with topamax a few years ago. Or with Lamictal. With no relief from the stopping of topamax, could it be lamictal?
  2. Andy

    Andy Active Member

    Has his anxiety been addressed lately? My difficult child totally fell apart last fall before we figured out it was anxiety. Just like your son, every little pain he thought he was dying. Chest pains, feeling weird, didn't feel he was getting enough air, seeing spots, lightheadedness, no energy to go anywhere (even to buy a lego set!) the list was truly endless. Seemed like every part of his body was effected. I was so scared - hoping that something would show up on a test. Not wanting something serious such as a tumor or cancer or whatever but at the point that I didn't care what it was, I just wanted an answer.

    The SW at the psychiatric hospital told me he was throwing up for attention. I told her that he is looking for help - his body is falling apart and no one is helping. Nothing is showing on the test - x-rays, EEG, blood tests, ect. ect. ect.

    Once difficult child was diagnosed with anxiety, he was taught coping skills and put on medications. It took six months and lots of determination on his part to climb out of that deep deep hole. He experienced anger, nightmares, feeling so evil, self harm thoughts, thoughts of harming/killing me and others.

    Anxiety is a huge bully. It can scare you into thinking that even the smallest of minor injuries will cause you death. It will get you to worry about your future and for a kid to wonder how they will make it in the world is super scary because they don't have those skills yet.

    Continue to do the medical tests needed to rule out EVERYTHING it may be. I would even redo the major tests if it has been a few years - new eyes may see new things? Maybe something was started that needed time to develop to see?

    At the same time, focus on the anxiety. Give him tools to work on when he is not feeling well. He needs to see a specialist to determine what is best for him. The first step might be to redirect his thoughts. Have him think of a very fun event - in his mind hear the noises of the event, taste the foods, feel the fun, smell the scents. Focus on that until the bad feelings go away. He can then write about how he feels. The breathing exercises are a biggy. My difficult child is using them now when he feels an anxiety twinge coming up. But let a professional decide about this - don't take my word for it.

    My heart goes out to him. I so hope you can find an answer and soon. I know you have been struggling with this for so long. Like my son, your son's anxiety may be rising because he doesn't feel he is getting help. It is scary not knowing what is happening and that fear makes things worse.

    My difficult child has been diagnosed with migranes but hasn't had a major headache since last February. I am continuing with the neurology appts for awhile but am thinking it was part of his anxiety?

    However, if I remember, your difficult child's migranes have been major and long lasting so I would never say his are not migranes. I do believe your difficult child does have migranes. The hard part, are migranes worse because of something else going on or is his body falling apart because of the migranes?
    Last edited: Dec 31, 2008
  3. smallworld

    smallworld Moderator

    Kjs, it's a really complicated situation that needs the attention of a good doctor who will look at all the symptoms and try to piece together what is going on. We on this board are not qualified to figure this out for you.

    I do have some thoughts, however, that I will share with you:

    Topamax, migraines themselves and over-the-counter pain relievers like Advil and Exedrin can cause stomach upset. Lamictal is generally well-tolerated, but I've heard of some kiddos who experience stomach upset on it, especially when they first start on it. Lamictal is weight-neutral so I'm not sure why he's gaining weight. Topamax causes appetite suppression.

    Anxiety itself can cause somatic problems, including headaches and stomach upset. In addition to all the physical issues that could be going on, your difficult child sounds very anxious (for example, fearing he's going to die is not normal). Lamictal will treat mood instability, but not anxiety. He may need a medication to calm his anxiety, which in turn could help with his somatic issues.

    I know money is tight, but your difficult child really needs to see a doctor. What does his psychiatrist say about all of this?
  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I've taken enough medications myself to know that any medication can cause anything, even if it's not listed or very uncommon. And, yes, Tylenol and Advil DO cause stomach problems if you take too much. I've been told that many times by doctors.
    Hypochondria is a frightening phobia that I had well into my 30's (and as a child). I would take him for cognitive behavioral therapy...that can become a total obsession. I used to always think I had some dreaded disease (always a fatal one) usually right before a depression hit me. If one doctor said I was ok, I thought he got it wrong and wanted my mother to take me to another doctor. I was like this until I was finally put on Paxil and, for some reason, that made my phobia better. Just a few thoughts.
  5. klmno

    klmno Active Member

    You know, it must be a horrible time for difficult child's and illnesses- I'll throw this out because SW reminded me of it last month- even though he's already seen a dr (pediatrician or GP), it might not hurt to take him back again. Mine had caught a virus on top of being unstable and having medication changes, and dr first said nothing physical was going on, 2 weeks later it was that he had a virus and his allergies were acting up and a week after that, I took SW's advice and too difficult child back to dr again, even though I thought this was all "non-physical"- but that time the dr said difficult child was very ill, ear infections, etc. So, I'm wondering if maybe there is such a combination of things going on that none of them are being treated adequately. I don't know that for sure, of course- it's just a thought.
  6. Nancy423

    Nancy423 do I have to be the mom?

    food for thought - any mental imbalance can cause physical symptoms. and if you "think" you're sick, you can very well become sick with-o having the bacteria/virus. This is NOT to say this is the case for your difficult child but just wanted to throw this out there.

    And yes, ibuprofen and Tylenol can cause stomach upset. My doctor doesn't like me to take it long term because of that.

    And just as an alternative - Try alternating tapping on both sides of the body, it can have a calming effect. My mother is trained in EMDR, and taught me a "pseudo" version. I basically just tap on the top of the hands (alternating) and talk calmly to my difficult child. The rhythem is not slow, not fast.
    Last edited: Dec 31, 2008
  7. ML

    ML Guest

    This might sound "off" and irrelevant but is there any chance of food allergies contributing to his headaches?

    Manster has anxiety like that too. If he takes a bit of food that's spoiled or mixes with something else he goes into a panic: am I going to die? Luckily I'm usually able to reassure him and calm him down right away. I think the CBT route is the way for both of our difficult children to go.

    I'm so sorry that he's suffering so much. Gentle hugs to you xoxox ML
  8. gcvmom

    gcvmom Here we go again!

    Some of his symptoms sound like panic attacks.

    Have you tried Benedryl to see if it opens up the eustachian tube and helps the fullness problem? If it helps, maybe there's something to the allergy theory, which could also explain the migraines.

    I'm so sorry you're all dealing with this and that insurance is compounding the problem.
  9. TerryJ2

    TerryJ2 Well-Known Member

    Kjs, I am so sorry.
    He's been having these headaches for a long time.
    I would definitely deal with-the anxiety issue, because his stress level can be either causing some of the headaches or making them worse. I would look into anxiety medications, and cognitive therapy. (I don't know how you will do this financially, except that both should be covered by ins. and you can put the copay on a credit card.)

    And yes, absolutely, Tylenol can cause stomach upsets. In fact, (dont' tell difficult child this) it's horrible for the liver. In fact, as a side note, Lamictal is not recommended for people with-liver disease.

    I found the info below on a website, in reg. to Lamictal. It does talk about lightheadedness, but more in terms of eyes rather than ears.
    Your difficult child could be having a mild allergic reaction, in addition to an inner ear issue.

    ****Call your doctor at once if you have any of these serious side effects:
    • <LI itxtvisited="1">the first sign of any skin rash;
      <LI itxtvisited="1">fever, sore throat, and headache with a severe blistering, peeling, and red skin rash;
      <LI itxtvisited="1">chest pain;
      <LI itxtvisited="1">pale skin, easy bruising or bleeding;
      <LI itxtvisited="1">fever, chills, body aches, flu symptoms; or
      <LI itxtvisited="1">muscle pain, tenderness, or weakness with fever or flu symptoms and dark colored urine; or
    • nausea, stomach pain, low fever, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes).
    Less serious Lamictal side effects may include:
    • <LI itxtvisited="1">dizziness or drowsiness;
      <LI itxtvisited="1">blurred vision;
      <LI itxtvisited="1">mild nausea, vomiting, diarrhea, upset stomach;
      <LI itxtvisited="1">headache;
      <LI itxtvisited="1">lack of coordination;
      <LI itxtvisited="1">weight loss;
      <LI itxtvisited="1">sleep problems (insomnia), unusual dreams; or
    • runny or stuffy nose.
  10. susiestar

    susiestar Roll With It

    Advil and tylenol are not meant to be taken daily for extended periods. Not just the rebound headache issue, but there are other problems they can cause. Stomach trouble is one of them, and it can happen when given with food or without food.

    The eustachian tubes are not somewhere they can get to and put tubes in. They simply are not in a place that can be done. use sudafed (you have to give your drivers license to the pharmacist to get it, but it is still with-o prescription - just tracked to cut down on meth production) and benadryl, but NOT benadryl alone. Using just benadryl can dry things out too much and then things stick together and the natural mucus gets too thick. Using the sudafed (generic is OK, but our ENT says the alternate sudafed that you don't sign for doesn't work nearly as well) will help keep things moving. Mucinex is also very good to add to this. It should help get the eustachian tubes opened up which may help some of the other things.

    I have suffered dizziness, ringing in my ears, terrible irritation at the sounds of some flourescent lights (my parents had to completely replace a light fixture in their kitchen because it gave me terrible headaches and the sound it made drove me absolutely batty - and I was an ADULT at this point, NOT a kid.) and have had many many problems with eustachian tubes blocking, etc...

    Get him to drink as much water as he can. Yes, he will ahve to go to the bathroom more often, but it may be the ONLY way to deal with the ear problems. I was able to avoid sinus surgery several times by upping my water intake to over a gallon a day. That done with the benadyl-sudafed-mucinex routine was very effective.

    Some medications don't work when you revisit them, or they work differently. So the lamictal and topamax were good to try, as they had worked previously, but his body had changed so they didn't work this time.

    I DO think anxiety is behind a lot of this. If he can learn ways to handle anxiety better it will help him even if his problems are all caused by very real problems. Has he tried the gluten and casein free diet? It can be done, and though maybe not very exciting, it can really help sometimes. It may be time to try it.

    I am sorry he is so scared about dieing. That is hard to go through at any age.
  11. bran155

    bran155 Guest

    I don't really have any advice. I just wanted to send you some {{{HUGS}}}. I am so sorry for you and your son. Poor thing!!

    Hang in there and God bless. :)
  12. BestICan

    BestICan This community rocks.

    Hi, this is only my personal bias, but I wonder if you feel confident that they've ruled out seizures? I see you've had tons of neurological tests, but my difficult child has seizures that were controlled by tegretol and he never had anything show up on the MRI or EEG. The reason the doctor called his episodes "seizures" is that the anti-seizure medication caused them to stop happening.

    You could go nuts looking at all the symptoms caused by various types of seizures, but vomiting, feelings of fear, feeling "out of it," all fit in there. You may want to tool around epilepsy.com and see if anything strikes a chord. My difficult child's seizures were characterized by intense feelings of fear, then being very sleepy, then several hours of being wired and a little "off." His pediatrician suggested it was panic attacks but I knew it wasn't.

    Good luck!
  13. Jena

    Jena New Member

    hi i'm so sorry to be so late to this. You have gotten so much good advice and thoughts already.

    As I read through your post the one thing that sticks out to me is anxiety, bigtime. As others have stated. I'm not familiar with the medications you listed, yet has anyone tried medicating him for the anxiety only?? Just a thought.

    My difficult child is similar, she has anxiety just about everywhere we go, so i'm constantly redirecting her and it. I try to teach her self talk and to try her best to gain control through the situation.

    My difficult child has thrown up from anxiety, become dizzy, ringing in her ears, etc. alot of the things that you listed. it is rough anxiety, it places you in a very heightened state on multiple levels.

    I wish you luck in figuring out what's going on. Hugs to difficult child for struggling thru all of this.
  14. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hyperventilation can cause everything from disorientation to headaches to vomiting to ringing in the ears. I know. I've been in ER with it. Now I have learned how to relax by breathing right. You may want to pick up a panic disorder book that explains breathing to relax. Don't Panic by Reid and Wilson (I think, I read it so long ago) was great for that.