13 Challenges to Having a Mentally Ill Child

>The Comedian is a beautiful, smart, funny, fast as the wind little boy who is also bipolar, ADHD, and pituitary deficient.

1. When we picked him up, at age 5 weeks, he looked starved. His skin was stretched over his skull, with deep sunken eyes. He had lost pounds since his birth. He was lethargic and sleepy and hungry. Within a week of us having him, he gained over 2 pounds.

2. He had a terrible cry, almost from the beginning. It didn’t sound like a normal baby’s cry. It was a howling piercing cry. Only I could get him quiet, with a strange, bouncy, dancelike walk around the living room. Over and over and over….

3. By the time he was a year old, he was having rages. He would scream over little things. He was inconsolable. Sometimes, he’d sit on the couch and bounce his head back against the cushions unendingly.

4. As he got older, he became obsessive over his appearance. He’d literally spend an hour in the bathroom in front of the mirror combing and re-combing his hair. He wasn’t satisfied until it looked just right, even though it looked the same every time he combed it. If we forced him to get in the car, so we could get to church, school, or a doctor’s appointment on time, he would shut down. He’d stop talking, he wouldn’t move, he would walk away….

5. He walked away at malls, grocery stores, parking lots, cemeteries, amusement parks. Sometimes he ran. The only person in our family fast enough to catch him is the Musician. Thank Goodness for the Musician’s speed.

6. Reading and math were a torture for him. When I asked him to read to me, he’d start rubbing his eyes or itching his arms until they turned red. He became anxious and would shut down.

7. At the end of 2nd grade, I asked the pediatrician about ADHD. We did the Vanderbuilt study, with the teacher and both parents filling out observation forms. His behavior signified ADHD without any doubt. The doctor prescribed his favorite medication and we saw an immediate change.

8. The Comedian said he was so glad to be able to concentrate. He could get a chore done in 10 minutes instead of an hour. He began to improve a bit in school. He also started self mutilating. His arms were covered with cuts and scratches. The doctor prescribed a different medication.

9. This new med worked the same as the last, but without the scary side effects. The Comedian continued to improve in school, but he was more sullen. The boy who made jokes and remembered every conversation he’d ever had faded away.

10. Around third grade, the pediatrician finally admitted that my little boy was actually too little. On these ADHD meds, his appetite had diminished so that he was eating less and less. We started the process of getting help for his size (I’d been asking pediatricians about this since he was 3). By the time all of the tests were done, including a tortuous 5 hour blood test, the specialists said his pituitary gland was the size of a pea. The minimum level of growth hormone considered healthy was 10, he was putting out .5.

11. The rages and sullen behavior were escalating. The pediatrician finally admitted that he was out of his league and referred us to the community mental health system. We went through a long series of testing and he was diagnosed with an anxiety disorder. Our psychiatrist put him on tiny doses of anti psychotic meds, changed his ADHD meds and also threw in an adrenaline blocker.

12. The 4 hour rages that included breaking furniture, tearing up clothing and toys, throwing rocks at the house, etc. lessened. I kept telling the psychiatrist that he was like Dr. Jekyll and Mr. Hyde when he went into these episodes and she’d nod her head and tell me how much better he seemed. I was frustrated to think that this was all the help we’d get.

13. Then we moved again. New doctors, new health systems. Our new pediatric endocrinologist prescribed a different growth hormone, one that is injected with a pen-like syringe with a tiny needle…so easy, so much less pain. Our new psychiatrist said bipolar and changed everything and changed our lives. My funny, smart, happy little boy is back. For the last month, we have not had any rages. Oh, there is some learned behavior that has to be modified over time, but that is nothing compared to death threats, suicide threats, violent attacks, running away, truancy, lying, screaming….I can only hope that the meds work for a long time. Everything I have read indicates that as he gets older, we will have to change his meds again and again.

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10 thoughts on “13 Challenges to Having a Mentally Ill Child

  1. >A sobering look into the life of a mother who loves her little boy so much. I am glad that were able to have new doctors with more understanding and new meds with less side effects. I hope that they work for him for a long time too.

    TT

  2. >Half the battle is getting the right diagnosis. I pray he continues to thrive. My heart goes out to you. Sending positive vibes to you and your family.
    Happy t13!

  3. >My Uncle was diagnosed with Bipolar disorder at a late age and unfortunately didn't stay on his medication like he should have. Although I love my grandparents so very much- they weren't the parents that Greg needed. Your boy is so blessed that he has you to love and take care of him, and what an amazing blessing to also have a Dr that has taken such care in diagnosing and caring for your son. My prayers are with your family.

  4. >Enjoyed reading your T13. As I read each entry I was hoping for you that the next entry was about finding some answers and something that helped. TFS.

  5. >Quick question: You mentioned rubbing his eyes excessively when asked to read, as well as the perfectionism and other things. While these are symptoms common to a lot of conditions, does he also:

    - have trouble writing neatly? When he writes "p", "d", or "b", does he often get them confused, or not be able to consistently connect the line with the circle for the letter?

    - complain of headaches when reading?

    - have trouble remembering what he just read?

    - complain about double vision, especially when tired?

    Our son had a (lesser) version of a lot of the symptoms you listed. We were thinking Aspergers or even full blow autism. Thankfully, our eye doctor diagnosed him with insufficient convergence and strombosis; he's been seeing a vision therapist ever since, and the change has been drastic. Screaming fits when we have to change plans at the last minute have stopped. His writing is many times neater. He can now read for more than 5 minutes without eyestrain and headaches.

    I've also discovered that I have the same condition, undiagnosed for my entire life, though thankfully less than he does. Apparently my eyes at some point adjusted to compensate so that one was farsighted and the other nearsighted.

    One quick way to see if your child *might* have this issue is to have him place a finger a couple of inches in front of his nose and ask him how many fingers he sees. If he says two or has to concentrate hard to see one, talk to your eye doctor for a formal checkup. Like I said, may not be the same condition, but they do share some symptoms.

    God bless!

  6. >As I read each entry I was hoping for you that the next entry was about finding some answers and something that helped.

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