Hyperventilation/Breath holding/Seizures/Mental disorders/Retardation

[jen69bren62]

My 12yo daughter's medical history is as follows: breath holding, hyperventilation, anxiety, panic attacks, seizures, mental retardation, behavioral outbursts,schizophrenia and bipolar disorder.  We have tried almost everything to try and help her with all of these problems including therapy, life modifications and medication. Do you have any suggestions as to something that may work that every Doctor we have dealt with has missed. She continues to decline and all is getting worse. She has been tested for Rett's syndrome two times and that came back negative on both occasions.

[pennst8r]

bumping it up - I lost you!

[pennst8r]

I had been wondering if she was verbal, as frequently the inability to communicate wants, needs and feelings is unbearable for challenged children. How well does she communicate? Short phrases or full sentences? Only concrete concepts or astract as well? These things make a significant difference, as it may be that she has pain, discomfort, or even frustration that she cannot understand or express effectively. She may not really know what "sorry" means, only that others say it when they do something "wrong". At what level does she function?

The inability to tolerate a change in routine is common in children, and adults, with mental retardation. She should be given notice of upcoming changes well in advance and then at intervals, so she has a chance to process the change and better deal with it. Does she show any autistic tendancies? rocking, repetitive movements that she does when stressed (called "stimming"). People with autism have an even tougher time dealing with change in routine, plus many have hypersensitive hearing and are bothered greatly by noises and high stimulus environments.

I sympathize with you on the trial and error and lack of results with specialists and meds. It is difficult to pinpoint the cause of the behaviors, and so what med will be effective is frequently hit and miss until an effective combination is found- partly because everyone's chemistry is different. If you give certain meds to "typical" kids, it will make them more drowsy. Give the same med to another kid, say one with ADHD, it will make them nearly manic. Also, most psychiatrisits I have worked with are excellent with mental illness per se. When you throw in the mental retardation, it is a whole new ball game, and the usual rules simply do not apply. Is the psychiatrist one who specializes in dually diagnosed individuals? Also, her ein PA, we have "wraparound services" that help to ensure the child has the same behavioral interventions at home, in school and in the community. Is htere such a service where you live?

Sorry I am rambling on and am afraid I will go beyond the space limit. I think I've given you more than enough to digest for now. Be sure you take care of yourself too; you'll be of more help to your daughter that way.

Penn

[jen69bren62]

My daughter started going to a therapeutic preschool at age 3.  She has received speech,PT and OT since that time.  She was diagnosed at age 3 with sensory integration and received the "Sensory Diet" at that time and for a few years but everyone thought it did not work very well and it was a source of uneccessary aggravation for her. We try to stick to a schedule everyday but as you know sometimes schedules change and she does not like that. We have tried almost every seizure med and SSRI with no decent results. It has been trial and error this whole time leaving us with a laundry list of meds that did not work. Alexis is seen by Buffalo's best pediatric Neurologist and seizure specialist, the best Psychiatrist, a pediatric Neurological opthalmologist(congenital nystagmus), she is also in the best school system providing all of her functional everyday school needs, PT,OT and speech. Alexis can have an outburst at anytime for anything, provoked by spilled milk or by nothing at all. Sometimes you can see it coming, sometimes it is a surprise. She will cry uncontrollably, rip things up, throw things, hit,sware, slam doors. I know she has no control and is remorseful afterward by saying she is sorry. It is sad. They thought for a while that this was actually seizure activity because after these outbursts she would sometimes sleep(postictal).

[pennst8r]

What else can you tell me about your daughter. I have worked in the field of mental retardation and related conditions, including Rett's, for over 20 years. What specifially have you tried? What types of doc's? Where do you live? Can you describe her behaviors? From what I read, I do not see Rett's.

Penn