HI all...New here

Discussion in 'General Parenting' started by Got2Sleep, Mar 24, 2007.

  1. Got2Sleep

    Got2Sleep New Member

    Hello, I am here with difficult child who is soon to be 6. He has diagnosis' of Early Onset Bi-Polar (EOBP), ADHD, ODD, sensory processing disorder (SPD), Separation Anxiety, and celiac disease. He will choose to not eat for days, and literally starve himself. He has had a feeding tube until this last August and we are praying to keep it out.

    difficult child is VERY medicine resistant. We are on doctor #3 who has once again said..."he is too compicated a case for me." He did refer us to NIMI in Washington for clinical trials...we will see.

    We also live in rural nowhere. We were driving 8 hours for treatment, and have had 5 hospitalizations since May of 06.

    I am glad Occupational Therapist (OT) have found this forum...I need all the help and support I can get!

  2. tiredmommy

    tiredmommy Site Moderator

    Hi S and welcome. Sorry you have to be here. You've really got your hands full. The first thing I would do is get a multidisciplinary evaluation done at a university/children's hospital. It sounds like you need many specialities looking at your son at the same time to ensure you have accurate diagnosis's and an appropriate treatment plan.
    Did he suffer failure to thrive or have any health issues in utero or as a newborn? His separation anxiety could actually be an attachment issue caused frequent illness or hospitalization as a baby.
    I know my child presents in an almost autistic manner when her allergies are kicked up badly and I've heard celiac disease can cause psychological symptoms... are you 100% certain he isn't accidentally getting wheat?
    What interventions/therapies do you have in place with his sensory issues? My Duckie turns into a maniac when overwhelmed by too much noise, loud sounds, too bright lights, crowds, etc. We need to use relaxation techniques to calm her.
    When you say medicine resistant, are you struggling with administering medications or are you having a hard time finding medications without adverse reactions? Duckie actually had allergic reactions to three separate allergy medications nearly two years ago and had a psychiatric reaction to a fourth 2.5 years ago.
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Has he seen a Child Psychiatrist or a neuropsychologist? What medications has he been on? Welcome to the board :smile:
  4. Got2Sleep

    Got2Sleep New Member

    First, thanks for the reply. Second, where do I even start getting a multidisplinary evaluation done? Can you give me some options there?

    FTT was a biggie as an infant and we still teeter dangerously about. Especially when in the low end of cycling, he chooses not to eat at all. And, he did have frequent hospitalizations(medical) as an infant up until about age 4. Since age 4--5 mental health hospitalizations.

    As for getting wheat, I seriously doubt it. One, he chooses not to eat most times, and 2, he is very picky and asks questions to everyone about the safety of the food. I am not saying he doesnt get cross contamintaion at times, but....

    As for sensory, he gets Occupational Therapist (OT) 2x per week at school as well as horse therapy every other Friday. At home, we do lots of trampoline, joint compressions, pillow sandwiches, etc. Sensory was one of the first issues approached.

    By medication resistant, I mean he metabolizes like a hummingbird, and we cant get much of anything to a theraputic level. He also has has dystonic reactions to several things, as well as allergic reactions to some.

    medications we have tried include Zyprexa(had a NMS), Abilify, Risperdal, Geodon, Lithium, Adderal, Ritalin, Straterra, Lamictal......the list goes on.

    Dont mean to be such a downer, but we are at the end of the rope here. He also sleeps less than 5 hours per night total...so, all are running on empty here.

    HUGS and thanks!
  5. Got2Sleep

    Got2Sleep New Member

    Hi..we are on 3rd child psychiatric. medications are listed in my reply post above. IF it is out there, we have tried it. We are now looking for somewhere else to go....yet again. Insurance and money are always the issue...we will see what this coming week finds.

  6. smallworld

    smallworld Moderator

    Welcome! I'm glad you found us.

    Multidisciplinary evaluations are generally done at university or children's hospitals. You may have to drive a distance, but it will be worth it in your case to figure out what is what. I live near NIMH in Bethesda, MD, and I understand the clinical trials there are amazing. You definitely should pursue that avenue.

    My son (difficult child 1) is not so much medication resistant as he is medication reactive. What we have found helpful is to start low and go slow with every medication he tries. We also make one medication change at a time to make sure we know what each medication is doing, positive or negative. As soon as we see adverse effects (for example, dystonic reaction with Risperdal, manic reaction with Zoloft, migraines with Strattera, etc), we wean him from that medication. Some medications like Lamictal helped a lot, but he was still experiencing resididual depression. At that point, we added a very low dose of an antidepressant. Things aren't perfect, but they're far better than they were a year ago.

    There is a blood test that measures liver enzymes and their response to various psychotropic medications. We are going to have difficult child undergo it as soon as we convince him that he can tolerate a blood draw (he's very anxious about all things medically invasive). The blood test is expensive, but it may be worth your while given your difficult child's reactions to medications.

    What happened when your difficult child was on Lithium and Lamictal? Has he tried any other mood stabilizers? Has he ever been on a mood stabilizer with an atypical antipsychotic at the same time?

  7. Got2Sleep

    Got2Sleep New Member

    Hi and thanks for your words of wisdom. I need all I can get at this point.

    As for the NIMH--we are on the list for a clinical trial. I have spoken to 3 people so far and keep getting sent up the ladder. Praying that comes through.

    Bllod draws are no problem for him. In fact he pretty much does it all but stick the actual needle in, and is very anal about the way in which they do it. They must wipe arm certain amount of times, etc.

    Lithium caused seizures and he went toxic as soon as it reached theraputic level. That was over a year ago. Lamictal gave the dreaded skin rash as well as showed no real improvements in behavior.

    FOr now he is on Depakote, Seroquel, Tenex, and we just weaned off of Xanax as it was disinhibiting.

    Thanks, and please ask any more questions you have. I think you guys might find something I am missing here..that is my hope.

    PS--B has a feeding disorder as well, we have been g-tube free since August
  8. smallworld

    smallworld Moderator

    Are you sure the rash from Lamictal was the "dreaded" one (Stevens-Johnson Syndrome)? Many kids get rashes on Lamictal, but not all are the fatal one. If you start low and go slow, the risk of the rash is greatly reduced.

    Has he been evaluted by a pediatric neurologist for seizures? Lithium can reduce the seizure threshhold. The symptoms of Temporal Lobe Epilepsy mimic BiPolar (BP).

    How is he doing on his current medication mix? What is his Depakote blood level? What dose Seroquel is he taking? Anecdotal evidence indicates that Tenex can cause problems for BiPolar (BP) kids.

    Has he ever been on an SSRI antidepressant?

    Do you feel certain he has Pervasive Developmental Disorder (PDD)-not otherwise specified?

    My easy child had an NG tube for a month last summer. She developed a choking phobia and refused to eat. Her medication combo (see below) plus intensive therapeutic interventions have helped her immensely. She's doing great now.
  9. Got2Sleep

    Got2Sleep New Member

    Are you sure the rash from Lamictal was the "dreaded" one (Stevens-Johnson Syndrome)? Many kids get rashes on Lamictal, but not all are the fatal one. If you start low and go slow, the risk of the rash is greatly reduced. --Not sure of anythign at this point. WE did start slow, but the rash continued and pharmacist and psychiatrist wanted us to stop.

    Has he been evaluted by a pediatric neurologist for seizures? Lithium can reduce the seizure threshhold. The symptoms of Temporal Lobe Epilepsy mimic BiPolar (BP).--Yes, we did MRI and EEG(both a regular and a sleep deprived) in October. No signs of seizures, although psychiatrist said he feels something is not right-either seizures deep in brain or weird form of migraines(was on Topamax for a while for these)

    How is he doing on his current medication mix? What is his Depakote blood level? What dose Seroquel is he taking? Anecdotal evidence indicates that Tenex can cause problems for BiPolar (BP) kids.--medications are so-so. He still cycles rapidly and sleeps less than 5 hrs per night. Depakote level was 67 last week, bood glucose was 57!! We had this problem before on Depakote a year ago, couldnt reach theraputic level and his liver enzymes started elevating. He takes 500mg am/pm of Depakote. We have weaned down his Seroquel to 200mg pm only. He was on 200mg am and 400pm, and we recently decreased. Tenex is not my favorite. In fact I have argued its effectiveness and we are in the process of weaning down on it as well. Have already cut the mid-day dose and lowered both am/pm doses.

    He has been on Prozac(major stomach issues) Zoloft(doctor felt it led to more issues and made him suicidal).

    As for the Pervasive Developmental Disorder (PDD)---we thought autism early on. He didnt speak until over age 2, but looking back, I believe it was due to feeding issues. But, he does have classic signs and I would love to resolve them with a simple NO, but too much points that way.

  10. smallworld

    smallworld Moderator

    Blood glucose levels don't have anything to do with liver function. High blood glucose levels are more likely from Seroquel than Depakote. As you probably know, BiPolar (BP) kids need Depakote blood levels in the 80 to 90 range; some need as high as 100 to 125 for stability.

    Has he ever tried the mood stabilizers Trileptal or Tegretol?

    Have you tried melatonin for sleep? My son and I also used Amitriptyline for sleep with good results.
  11. Got2Sleep

    Got2Sleep New Member

    I realize that about the blood glucose. It was just one of those things that had we not being drawing for a Depakote level, we probably wouldnt have known about.

    The doctor wants his Depakote level above 100...he has been on it since December.

    Same with both Trileptil(no real benefit and was super whiny and clingy) and Tegretal couldnt get to treatment level. He was taking it via g-tube though and we think possibly that had a metabolizing effect.

    Melatonin activates him, as well as Periactin, Benadryl, Ativan. Trazadone did help him fall asleep, but he was almost always manic the next day. Ambien caused hallucinations, Lunesta works at getting him to sleep, but then he wakens very frightful during the night.

    I will mention Amitriptyline to the doctor. Thanks for the input.

  12. smallworld

    smallworld Moderator

    Boy, you have been through the wringer. I thought my kid was hard to medicate! I hope you can get into NIMH.

    Beware that Amitriptyline is a tricyclic antidepressant and could activate him (but it didn't activate my son whereas other ADs like Zoloft, Prozac and Effexor did).

    The only way you're going to get over 100 on Depakote at this point is to raise the dose.

    If rash was your only issue with Lamictal, you might want to try it again.
  13. Got2Sleep

    Got2Sleep New Member

    Here is a quick list I keep on hand for me....

    Previous and adverse reactions:

    Abilify--bullemic eating and anxiety

    Zyprexa-possible NMS

    Risperdal-no beneift at high dose and skin rash

    Geodon-extreme fatigue and cognitive dulling(this was inpatient at SMHC)

    Dexadrine-NO sleep for 4 days and in high gear

    Ritalin-same as Dexadrine plus wound tight and stomach issues

    Adderal XR-rebound in evening with aggression and crying

    Adderal-dystonia after possible NMS


    Tegretol-could not reach treatment level-metabolized too quickly

    Trileptal-large dose, no benefit, aggressive

    Lamicatal-skin rash

    Depakote-no real benefit,liver functions elevated

    Prozac-stomach problems


    Ativan-extreme activation

    Buspar--no problems I am aware of

    Ambien-gives about 2 hours sleep/hallucinations

    Trazadone-helps him stay asleep once he is asleep, but he is so irritable the next day and almost always has a manic episode

    Benadryl-turns to spiderman

    Phenerghan-hyper and mean

    Periactin-no appetite help and mean

    Atarax--NEVER would I give it to him again..worst thing I have ever seen--BAD!
  14. Liahona

    Liahona Active Member

    Just wanted to add my welcome. If the psychiatrist says he is to complicated a case for him who does the psychiatrist recomend? I've found the best tdocs and psychiatrists are recomended from others in the profession.
  15. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Is he getting Pervasive Developmental Disorder (PDD) interventions? All of my son's earlier symptoms, including hyerpnness turned out to be linked to the Pervasive Developmental Disorder (PDD)-not otherwise specified, and his bipolar diagnosis was rescinded. These kids can appear to have bipolar when sometimes they don't. medications made him worse.
  16. SRL

    SRL Active Member

    Hi Got2sleep & Welcome.

    Whenever a child this young has an ABC list of diagnosis's but no one big umbrella diagnosis under which everything else falls, I always am suspicious that something has been missed. Knowing what we know about child psychiatrists and the frequency in which certain disorders slip under the radar, I'd be doubly so. Obviously we don't diagnose here but what we want to do is 1) give you the information needed to set up a proper assessment and 2) give you a reasonable direction to go digging around research wise.

    You will want to schedule an appointment with your pediatrician and tell him/her that things aren't going well and that you want a multidisciplinary evaluation at a Children's Hospital. This would be with a developmental pediatrician preferably given the combination of health and behavioral issues or a neuropsychologist if that's too far out. I would want a pediatric neurologist, a private Occupational Therapist (OT) evaluation, and speech/language assessment for starters. If the route you are pursuing doesn't pan out and you are going to have to travel anyway, I'd highly recommend Mayo Clinic in Rochester, Minnesota. They are set up for handling out of town patients and they have some of the best medical staff in the world so you could cover both realms at once.

    Secondly one of my HUGE concerns with medicating early by child psychiatrists for Early Onset Bi-Polar (EOBP) is that we are finding that a lot of Autistic Spectrum Disorders look like Early Onset Bi-Polar (EOBP) if they aren't treated properly. Medication--especially if a poor responder--only makes the situation exponentially worse (been there, done that with my difficult child). When kids have both behavioral and health it adds to the confusion. Since your kiddo has anxiety and sensory those would alert us to look seriously in that direction.

    What has his speech development like--any delays or differences such as talking very early, talking like an adult at a young age, etc? How about the mental health history of the biological family?

    (Ladies, Sorry I'm painting my upstairs today and tomorrow so will you help her pursue this avenue very thoroughly please? I'm not saying Early Onset Bi-Polar (EOBP) isn't there since I know it can be comorbid--I'm just suspicious that something is missing. Also she could use some Explosive Child help!)
  17. SRL

    SRL Active Member

    Also, has he gone through early intervention through the county or school district? Outside of Occupational Therapist (OT), is he getting any services?

    I'm always concerned when children have been through a large list of medications at a young age that the support services aren't matched for the needs of the child. How does he do in the classroom? How about socially--does he have friends?
  18. Sheila

    Sheila Moderator

    I may be way off base here, but with all the problems your little one is having, it might be prudent to rule out allergies -- sure couldn't hurt. There's a blood test for allergies that is much more comprehensive and reliable than skin :censored2: testing. You might want to consider having a full battery done.

    If allergies are causing some of these problems and that's brought under control, it'd be easier to sort the rest out.

    Another potential is Obsessive Compulsive Disorder (OCD). Based on what you've written, it seems he may have some "rituals?"

    Couldn't agree more with getting a multidisciplinary evaluation done.

    You might also want to think about doing a Parent Report. It's helpful to the professionals and can be updated as time goes by. (Also helpful to parents. When filling out new patient info, I write "see Parent Report." lol)

    There's info on the FAQ/Board help forum with a thread on parent reports.

    The Explosive Child is a good resource. Also, The Bipolar Child.

    Whew! He's a toughie!

    by the way, welcome to the site.
  19. Got2Sleep

    Got2Sleep New Member

    Thanks for the welcome. He really would like us to move to San Antonio where he is. I think the long distance is complicating the issue more. We live so rural that there is NOTHING here. He did reccomend we call NIMH and we are on that track now.

  20. Got2Sleep

    Got2Sleep New Member

    As for Pervasive Developmental Disorder (PDD) interventions, not really. We just got that dianosis in May, and the school is slow to add anything. They do have a autism specialist coming in, but he is low on the list.