in the process of a possible BP diagnosis... help!
hi all,
i'm new to this forum and would really love some answers to what's going on in our house. our oldest daughter (now 9) has had issues since she was 21 months. prior to that the only thing unusual i ever noted about her was her sleep... she seemed to need to sleep ALL the time, and even at just a few months old social situations seemed to just wear her out both physically and emotionally. at 21 months she started crying whenever people would come over, and often would cry till they left. she refused to participate in any group activities and would not ever let me out of her site. at age 4 she started getting seriously hyper, but it was like a stressed-out kids of hyper. i dreaded anything we had to do that would force us to be around people because she was so hyper. and would cry so much. when she started school her teacher had lots of problems getting her to try things, to sit still, and to not be so wound up. in first grade we had her tested for ADHD and started meds. the next year our districts' autism assessment team evaluated her for several months and diagnosed her with aspergers (she much prefers younger children and loves to talk in made up languages and sing-songy voices). at the end of 3rd grade (last year) we discontinued the ADHD meds because they seemed to be doing nothing for her at all. she was becoming psychotic, instead of just crying she was screaming over things, sometimes for an hour or more. we would let her go to her room and cool off and when we would go talk to her later a lot of times she was back at the other end of the high - giddy to see us and seemed to have no recollection of her tantrum.
sometimes she seems to know what sets her off but a lot of times she doesn't. she can't seem to tolerate anything - everything gets on her nerves. she frequently complains of headaches. i hate riding in the car with her - it always sets her off even if no one else is doing anything and it's only a 10 minute trip! i can't take her to the mall - we frequently lose her, or she rearranges everything in the stores because it doesn't make sense to her. or she'll tell the store clerk how to do it. she's bored at school; her teachers really have tried their best to help but she has an IQ of 149 and is bored senseless. she will challenge adults in authority over her if she doesn't like what they are doing or if it freaks her out. she falls asleep ok at night if we get her in bed at a reasonable hour but wakes up a lot - sleepwalks, yells in her sleep, ends up in a different part of the house. she now loves things that are dangerous (her words) and like to be naked when she can or keep her legs in very inappropriate positions. i am scared, and am SO burned out i'm not sure how much longer i can take this. our psychologist thinks she's bipolar - is this a possibility? we are trying to get into see a ped psychiatrist but it's taking forever. she gets so worked up being around others - it comes out in the form of very annoying hyper, and there is apparently no ADHD med on the planet that will work - we've tried just about all of them with no results or they made things worse. i feel like we can't have any kind of family life at all (we have a 7 and 4 year old too) and most kids her age cannot tolerate her. she is SO smart and unbelievably creative, but wasting away. any input would be so helpful - thank you and i'm so sorry for the long rambly post. :)
Hi Katieb,
You don't know how much we can sympathize about waiting for an appointment. For us, our daughter was 5 when it became absolutely undeniable as to how bad it was and that she was mentally ill. Our family doctor prescribed Resperidone, and referred us to a psychiatrist which was an agonizing 2 month wait. Once we were past the intake, it was much easier to get in, even on an urgent basis.
While your waiting, something to keep in mind is safety first. Our little girl was 6 when she started taking a baseball bat to her younger brother's head. We are lucky he was not injured. He has spent a lot of extra time at Grandma's house to keep him safe. If your daughter gets bad enough and nobody is safe, then if you don't already have a plan in place, please call either a local crisis line or 911 for an ambulance.
I wish somebody had spoken to us early on about diet and nutritional supplements. At one time I would have scoffed at the suggestion, but for us now, I believe it is the only way to keep her stable. For tody, it is diet and supplements + a very minimal amount of psych meds. I don't think she would ever have became stable on meds alone. Over the last 2 years (but it seems like a whole lot longer), we have tried quite a number of meds with either a bad psychiatric reaction, a bad side effect, or at best only little long term effect. Within a few months of starting something new, we would be upping the dose, but that would only last a few more weeks, and we would up it again, finally to where we were at a max dose.
Keep in mind everybody has a unique set of genetics. These diseases are combinations of roughly 5-15 completely unique genetic factors, but with a somewhat similar set of symptoms. So everybody's disease has a different cause and thus will have a different outcome. What works for us will not necessarily work for anybody else.
While you are waiting, I would suggest immediately looking at your diet. If we had a do-over, before a psychiatrist, we would start with cleaning the house and changing to a diet that does not include gluten, dairy, soy, corn, food colorings, and food preservatives. There may be some other stuff too to experiment with later. If this helps, the individual items can be added back in later under a controlled situation to see how it effects her mood. Don't worry, there are a lot of good foods left to eat. With stopping eating anything at a restaurant or anything that comes pre-packaged in a box, you will save money as well. If you either see immediate improvement, or drug withdrawal like symptoms (cold sweats, headache or flu like symptoms), then you know you are on the right path. At this point, you are looking for improvement, not perfection.
I would also take a look at True Hope's products called EMPower Plus, and Amino Power plus (www.truehope.com). I would speak to their help line and order some products following their suggestions. Note that the help line people are very knowledgeable, but are definitely not doctors. There product is far superior than any over the counter multivitamin/mineral products, and I would not even recommend trying any kind of a drugstore equivalent. The other common supplements to take are fish oil, co-enzyme Q10, methyl folate, and NAC (n-acetyl cysteine). Although you could start those now from a drug store and according to label instructions, it may be best to wait until you have an integrative physician behind you.
Next, I would try to get to an integrative physician this week. The easiest resource that is somewhat widely available is a DAN! doctor (Defeat Autism Now). http://www.autism.com/pro_danlists_results.asp?list=US&type=1 There are other more specialized integrative psychiatrists, but they may be hard to reach in a short amount of time. Generally the DAN! doctor and the integrative physicians can take insurance and are relatively inexpensive. There are several posts on the CAM section as to how to find a doctor.
Lastly, If we had a do-over and before going to the first psychiatrist, I would read the posts on the CAM section. I would also poke around at Naomi's It's Not Mental blog, and read her book. Several of the posters on the CAM section posts have had kids as severely sick or even much worse than ours and now their children live wonderful normal lives without meds.
With all of this, don't be surprised if the normal medical community and the psychiatrists scoff at you. If it were me starting again with our daughter, I would try this before the highly addictive psychiatric meds. The proof will be in the pudding will be your daughters moods. In the end, you may need the meds to get her stable enough to even try the CAM approach.
Lastly, before you get very far down the road, I would insist on a thorough neurological examination, complete with a minimal of screening tests for hormone function and other physical non-psychiatric causes.
Wheather or not you pursue the CAM approach, with a little hard work and some trying days, you will make it work. I hope some other people with more background answer in the morning, but until then, we wish your family the best of luck.
Brian,
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BK Daughter 7 BP/violent rages. Unsuccessful with multiple meds. Now reasonably stable for last 3 Months (with a couple of slip backs) on Intuniv + Restrictive diet + True Hope's EMPowerPlus & AminoPowerplus + low dose lithium.