I'm worried about my son

[kimberlylynne23]

My 5, soon to be 6, year old son has been communicating with unseen entities since he was 3. He used to have full on conversations with his "friends" but now he complains to me all the time that whispers are stuck in his head and he can't get away from them. He doesn't understand what they are saying because he says there's too many. He also will tell me there is someone standing in the room with us, it's either one of five "characters" and he will explain in detail what they look like, where they're from, their name, their clothing and each time the details about each one stays the same, he never changes their stories. One is a young girl named uleesa who has dirty skin, torn clothes and is covered in blood. Another is a young boy named roscoe who wears "short pants" with suspenders,has gray skin, black hair, all black eyes and no other facial features. He is quite scared of the roscoe character. And there are three more distinct characters that he sees. He has extreme hyperactive and attention issues, he was diagnosed with adhd last year and takes adderall and also clonidine to help him sleep. He has macrocephaly which was caused from the size of his brain. His brain is bigger than an average adult brain. He has an mri done once a year to make sure his brain isn't growing faster than his skull. Doctors say his brain size is responsible for most of his health issues which includes asthma, severe sinus problems, slightly impaired hearing (he's had two sets of ear tubes and is now on his third) and enlarged adenoid and tonsils which have both been removed. In addition to adderral and clonidine he also takes desmopressin for bed wetting, zyrtec and singulair. He has had night terrors since age 2. Psychiatric disorders run in my side of the family, my great grandmother and grandmother both suffered from schizophrenia and my sister and I have both been diagnosed with bipolar disorder. I have talked to his pediatrician over and over again about what my son is going through. She keeps telling me it's "just a side effect" of adderall. But this was happening long before the adderall. He very smart but has little interest in anything except for tv (which I have on a strict hour a day allowance),building legos, and drawing. His drawings differ so much from day to day that some don't even resemble his work and some he has no memory of drawing. He talks like he lives in a different world, more than just a child's imagination would do. He says the most random things like "it seems we have a horse on our house" and he's completely terrified that the moon and/or Sun is going to fall out of the sky onto him and he'll be stuck under it forever because no one could pick it up. I am not convinced adhd or the medication is the root of this. I feel like I'm failing my son because I don't know what to do for him. If anyone has ideas or advice on what could be troubling my son or what I could do please I would be extremely grateful. I'm working on finding a new doctor for him but there's not many options where we are and I only want the best for my son. Thank you so much

[Sandman2]

   Oh, forgot to also mention this link - http://www.additudemag.com/slideshow/42/slide-1.html?utm_source=eletter&utm_medium=email&utm_campaign=December

[Sandman2]

     You mentioned his angry and aggressive behavior.   I just did a long post on this subject.  Check the last post I made in this link:  
        http://www.medhelp.org/posts/ADD---ADHD/how-to-help-my-8-yr-old-daughter--and-myself/show/2594928
      This is also a very good post and more age appropriate:
     http://www.medhelp.org/posts/Child-Behavior/4-year-old-son/show/2423496
    And yes, I think a psychologist who specializes in kids would be a really good idea.     If nothing else the doc could give you a better idea of what to expect from kids with ADHD and how to work with them.
    Oh, do check out the books I mentioned in the second post.  The Cool down and work through anger is a sweet book.

[kimberlylynne23]

also to answer your question Sandman2 he only talks to the characters when the adderall wears off. The whispers happen anytime of the day whether or not he is medicated. I also agree that a lot of this is probably just because of his age, but he has always been different than other kids his age. He just does things differently, he talks differently, he plays differently, he acts differently I don't really know how to explain it but in a group of kids, my son sticks out like a sore thumb. He displays the same aggressive and angry behavior that I did as a child  but still there's something different. I wish I knew the exact words to say. I've even asked his doctor several times if he could see a behavioral therapist so someone besides my family and myself could see, and maybe they could explain it better.

[kimberlylynne23]

And what I meant by the medication not being the root of this is that he's been having this problem before the medication came into the picture, yes it may or may not be the cause of the whispers, but not of the whole problem.

[kimberlylynne23]

The whispers are recent, he just told me about them a couple weeks ago and he has no filter whatever is on his mind comes out of his mouth so I doubt he heard them before telling me about it. He wears good nites so I do occasionally give him a break from the desmopressin but the others I can't. Adderall was really hard on him when he first started taking it and it took awhile for him to get used to it, I don't want him to go through that again. I would if I could change his medication, but first I would have to change his pediatrician because she's headstrong about it being the best for him. She also refuses to give him a referral to a neurologist except for the one we go see for the mri and past visits have been so stressful that I honestly didn't bring up any of this and it was before adderall and before the whispers, his next visit is in October so I might have a chance to say something then. One thing I forgot to mention was after the first three mris, the current neurologist wasn't able to come up with a reason for his head growth so they sent us to a neurosurgeon. The neurosurgeon was the one that explained my son has a very large brain, but he also has an enlarged ventricle in his brain but they don't think it's dangerous. I don't know if that could have anything to do with what he's experiencing or not. His pediatrician is well aware of our family's mental background but she's convinced he's not affected by any such thing and it's extremely hard right now to get him somewhere that will actually try to find out instead of sweeping it under the rug.  

[Sandman2]

   Wow, I hardly ever do this, but gonna disagree with Rockrose on the Adderall issue.   As you said, "But this was happening long before the adderall."  The rule of thumb is that you deal with the mood disorders first, and then the ADHD.  You don't ignore one or the other.  (New ADHD Medication Rules, p 97)
   Wow, I feel for the little guy (and you).   When he is talking to these characters - is it all day long or after the adderall has worn off.  Regular adderall is only good for 4 to 8 hours.  Start charting these behaviors to see when they are happening.  
   And yes, you really do need more then just a pediatrician to deal with this.  This is way out of their league. Do the docs who say he needs the MRI yearly have any references that you can use.  It sounds like they have seen this before.
   And you know in some ways he does sound like a typical 5 going on 6 kind of kid.  They really do live in a slightly different world.  They have enough intelligence to know what is going on, but no clue why.  
   I am almost tempted to suggest you start reading Ronald Dahl  stories to him to show him that imagination is ok.  
   And maybe rethink the tv limits a bit if you can find the right show that actually gives a bit of science, etc.  
  Oh, I am also the CL here - http://www.medhelp.org/forums/ADD---ADHD/show/175
    Don't be afraid to post there for more info on ways to help him with his ADHD.

[RockRose]

Is there some reason he has to be on Adderall?    I know he's got hyperactivity,  but adderall is contraindicated in children with a history of mental illness symptoms,  and with a family history of mental illness or bipolar disorder.

You say he had imaginary friends before but recently he began hearing the voices.  Hearing voices is probably a result of the adderall - it sounds like that wasn't a problem before?

Now that it's summer can he take a break from all medications (including the bedwetting one,  even?) to give his body and brain a break?