911RN

This article describes the difficulty I touched on just recently when you have a child that does not fit a particular diagnosis or criteria for diagnosis. With the new DSM guidelines....seems like with lowering thresholds it WILL REALLY MUDDY the waters even more. "Won't even be able to spot a supermodel on the catwalk"...kinda sad but true, it seems. http://www.sciencedaily.com/releases/2013/01/130111092455.htm

My son is also "quirky" but has been tested and does not fit Asperger's Dx or Autism dx. I had one doc (Developmental Peds) at UNC that wanted to label him "asperger's, not fitting the criteria." When I took him to another Dev peds...he said this was BS. You either fit the criteria or you do not. Don't force a square peg into a round hole. THAT is the reason for the criteria! He said, if not, why don't we label everyone a little asperger's, a little Autistic, a little OCD etc. I believe the most important thing (besides a label) is to make sure your child is getting the resources they need for the developmental issues and IEP accommodations (however, I realize, sometimes, a qualifying diagnosis is NEEDED for that). I would suggest repeat testing by Neuropsych. My son has had extensive psychoeducational testing at age 6,8, 9, 10 and 11. We learn something at every testing that helps us going forward. Some of it has been speech related as well as academic related.

I have heard from parents from other forums take their kids to BBC with mixed results. It's expensive. I have had practitioners tell me neuro biofeeddback is beneficial for some of these kids if you can find good practitioner in your area. That may be worth the money if you can find it?? Good luck!

The summer of 2009 my house sounded like a bird sanctuary...I thought I would lose my flippin mind. That summer my DS9 (at the time) was hooting like an owl and peeping like a bird repetitively without realizing it. It seemed nonstop. Only time it stopped was when he slept. It was like a women in labor using the Lamaze method. Hee, Hee, Hoo, hoo. I started him on a Inositol/Choline combo...the tics stopped in a couple weeks....never to return again to that level. I have since stopped the Inositol but often wonder if I should have kept him on it. He still has some vocal tics but not LIKE the summer of 2009. It was 400 mg of each in combo capsule...think I started out a one a day for a week then twice a day. I kept him on it for several months. I read (at the time) when I was doing lots of research that you shouldn't give Inositol without Choline. One augments the other, synergistic effect, however, I have been unable to find that same research again. Despite looking for it Feel your pain, been there, done that. 16 year old moody teenage girls...sorry, got nothing for ya Only have boys! My 15.5 yo is neuro typical and not too bad.

I am struggling with figuring out how to punish my daughter for some behavior that is not acceptable. I feel like my husband and I are constantly allowing my daughter to get away with behavior that we would never let our other two non panda kids get away with. We still need to teach our daughter what is or what is not acceptable behavior at times. I'm not talking about when she is having a major episode and she is definately not all together sad, silly, argumentative, defiant etc... I'm talking when she is days into her treatment and she is acting okay most of the time ,but has her moments that are just not acceptable. My therapist says I need to be somewhat consistent and set my rules and stick to them which I agree. I just feel a bit guilty as I'm not always 100% sure she can always control this behavior...I know at times she can really try hard and hold herself together fine, but then there is other times I'm confused. How do others handle this with their kids? Any advice would be great We've not figured it out either. It took me a couple of years to accept the fact that he was not in control -hmmm, same years that our doctors insisted there was nothing wrong. Until then, we tried everything. Time outs are great if your child will follow direction. I still remember night after night holding him in his room for his time outs. On the positive side, I was getting exercise too. He seems to be over the worst of it so we've not had the severe discipline problems in a while. We did make it very clear to him that if he hurt someone in the family we would take him to a hospital. That scared him, especially after we took him there once - me holding him down the whole trip there. So one bit of advice, you have to follow through when it's serious. I do feel that it helped to discuss his behavior with him when he was in control. That also allowed us to gauge how he was doing. If he was remorseful, great. When he wasn't, those were scary times. Knowing that he wasn't really in control we've moderated our stance somewhat and pick our battles. (Our daughter reminds us that we allow him to get away with things that we would not allow her to but then again she's 17 and life isn't fair.) As he continues to heal, discipline becomes easier as well as less often. So - I don't think that easing up on the discipline while they are sick is necessarily detrimental in the long term. If your kid is essentially a good kid and it's the PANDAS making her behave inappropriately, I think they self correct as they get better as long as you are there to keep moving the bar in the right direction. All of this is of course - IMHO. bill I do not tolerate "bad behavior"...if it s OCD driven or 'disease driven' then accommodations are made. My son looked for the green salt shaker for 10 min the other day before eating...the "other" salt shaker would not do. He is not going to starve, not my problem, don't care if his food gets cold. This was OCD behavior, quirky-yes, not the end of the world, won't matter tomorrow... thus, no discipline necessary. He was having some urine frequency OCD the other day (during homework) and kept jumping up for urge but not really going anything (I don't think?). I just put up with his hopping up and down but we got thru homework OK. Think this has some avoidance tendency to it. However, if I ask him empty dishwasher or empty trash and get static because he is on the computer and engrossed in game etc. then I, like, dcmom take away "things" and "electronic/electricity" until it is done (no time limit- just remove the item from his grasp.- not tv, no computer etc. It works....he jumps up and does what he is supposed to so not to have his game/show etc turned off. Sorry for screwing upreplies- I haven't figured out how to do the reply thing to have it show up like everyone else's????

Yes, his doctor was a "regular" allergist-asthma specialist. In practice with ENT also. Although, he never has had asthma. We were lucky, that way, for a kid that was so allergy prone. Allergist felt he may not have developed asthma due to being breast fed baby for over a year? Never had formula or milk. He had skin prick testing at age 6 then serums were developed based on his allergies and he proceeded to get shots...for 5 years!! His allergist said most kids only need 3 years but my son was a "special case." However, it worked. Now, we are on to braces at age 15.5. Oh, joy He is a special case for those, too. Got the $7000.00, 28 month plan for that today Lordy, need to get another job! Good luck with whatever you decide. Steroid nasal inhalers like Flonase and Nasonex are good at for seasonal allergies. Must use them regularly (once daily) for 2 weeks or so to get inflammation fully tamped down but they are quite effective with little to no side effects (for most). I use them primarily in Spring and Fall if things get bad for short periods then I don't use them anymore until the next season. There are some histamine blocker nasal inhalers also that folks swear by- I have never had prescribed but they are reportedly better for the itchy, runny type allergies you describe that you have. I have the stuffy, congested, blocked up type allergies.Allergies tend to run in either one of the two camps. Runny nose, itchers... or stuffy head, can't nose breath..ers!

My older neuro-typical son took allergy shots for 5 years from age 6 to age 11. He tested moderate to severe reaction to nearly every environmental allergen tested. Trees, grasses, molds etc. EXCEPT, no foods, thankfully. Prior to allergy shots, he suffered from chronic headaches and repeat sinus infections. He is 15.5 now and I can't even remember the last time he had a cold! Has been super healthy for years. He is completely clear of allergy symptoms now... while, the rest of the family that has never had shots all still suffer during allergy seasons You must be committed. Have to stay on a regular schedule for effectiveness. Testing and shots are not cheap....as long as you have good insurance coverage- you should be OK. Luckily, we did. Shots will probably help your asthma, as well.

How much Zinc are you using and the weight of your child? We could use a little more attention and focusing round here! I've tried various supplements suggested for various reasons from this site. Some have worked. Most have not.....but I'm always willing to give a trial when I see some of this info to see if it has a long lasting impact for my child. Probiotics were no go. Fish Oil is Ok for us. NAC was a no go. Have not tried Zinc??? Thanks!

It will take awhile for serum levels to go down to see appreciable differences with decreases in Lamictal. Half life is like 33 hours...pretty long by most drug standards.

Lots of memory issues here to...short term, some long term but more executive memory issues.

My son did not do well on probiotics either. Increased tics. We do without it. he does not have gut or yeast problems so fortunately we do not need it

Yep, sure do. It is well researched...Lamotrigine induced tics. Go to google scholar and you should be able to pull up the abstract easily. My neuro and I have talked about it at length in the past.Usually occurs at higher dosages, however, my son's ticcing worsened on Lamictal. Unforuntately, for us, he has to take a antiseizure medication for abnormal EEG and after 3 different ones... Lamictal was the best for us. So, it has always been a risk benefit ratio. We try to keep it at lowest dose for most gain and minimal side effects with tics. I am currently weaning from 150 mg down to 125 mg.We weaned down from 200 mg to 150 mg last Spring. His risk of abnormal EEG diminishes with puberty so our goal is to wean completely by age 15. He is 12.5 now. If your DD does not NEED Lamictal for it's AED properties and if you can get a handle on OCD, rages and defiance with another med (SSRI's??) then I would recommend a change to different medication to free her of the tics. Or, wean Lamictal a little and see if tics diminish. There is usually a sweet spot.

My son took Prozac for about 2 years. Highest dose 30 mg. Effects seemed to be waning and he was getting "aggressive," in some instances, which was very uncharacteristic for him.I asked Neuro to change SSRI to Zoloft. He is 12 and approaching puberty. Reportedly, Prozac has higher incidence of aggression in adolescents. He has been on Zoloft for about 6 weeks now (50 mg)and so far, so good. He seems happier, less stressed, less anxious, more social. Improved and better reports of behavior from school with medication change. He can go higher- 75 mg. He is considered low dose now but I am just holding steady and watching. Can go up later, if needed. Storch and Murphy from the children's OCD in FL clinic recommend Zoloft as drug of choice for children for OCD/anxiety over the other SSRI's. That's ome endorsement, I suppose. It's worth a trial. As Nancy said, go low and slow.My DS weighs about 130 lbs. Good luck:)

What else have you tried besides antibiotics? GSE, Artemesia, Magnesium, Acidophilus, monthly IVIG I don't want to cause a firestorm of debate. However, this sounds as if the current therapies are having very little impact to improve you or your daughter's life. Existing is not life. For you or her. I have not had a child so debilitated that he cannot leave the house or attend school. I can only imagine the stress that would place on a family, including the child! I would be open to trying some different medications many might consider under the "psychiatric" realm. SSRI's or other mood controlling agents. You describe an extreme situation...may need more than complementary, antibiotic or alternative treatments. Many of our children have improved and enjoy a better quality of life with low dose SSRI's, Lamictal and other psychiatric medications available. A good pediatric psychiatrist or neuro-psychologist should be able to help you and her. The current plan does not seem to be working...just my observation from reading. I can't imagine this life is enjoyed any more by your daughter than it is for you.This level of social anxiety, fear, separation or... whatever it is... to cause this level of disability calls for more extreme measures, in my opinion. There are medications that can help...it is not a cop out to use these medications (if they work). It is called getting your family's life back.

What else have you tried besides antibiotics?

My DS12 suffers from complex vocal tics and some oddball, intermittent complex motor tics. Thinking is more OCD compulsive motor tics.Vocal>motor. Vocal more consistent. Motor comes and goes, less noticeable for the most part. Anyway, he has been on Keppra, in the past, which at higher doses caused severe vocal tics that was drug dose related. Bird noises- hooting like an owl and tweeting like a bird etc. It was HORRIBLE! Thought I was living in a bird sanctuary the summer of '09. He was totally unaware of it- thought I would LOOSSEE my flippin mind! It was relentless and nonstop except when he slept. With decrease the vocal tics diminished and went away. Whew! TG! He has been on Lamictal for 3 years....same thing- higher doses- increase tics. Lower dose- somewhat OK. I have research articles on "Lamotrigine (Lamictal) induced tics." You can google scholar it and probably find it easily. My DS12 has to be on AED for underlying abnormal EEG. We have been through several AED's and Lamictal has been the best "all round" although, none of them have been the perfect fit for all situations. Keppra was good for several years then effects seemed to wane (which, CAN occur with Keppra- research based data to support this). Memory, social abilities, creativity and handwriting were better on Keppra. Lamictal has been better for mood stability, less anxiety but he lacks creativity and is less social. Hand writing is worse and it somewhat dulls him so executive and working memory is worse. I have talked to adults on Lamictal and they say it is somewhat like being in a brain fog, at times. I have found that the XR formula was much better for him than the regular tabs. Less highs and lows- way more consistent all day coverage and stability. XR is expensive bu I have good insurance drug coverage so I don't pay much for XR tabs.Anyway, our experience has been with Lamictal- lower dose- OK. Higher dose- increase tics. We weaned from 200 mg to 150mg daily last year and tics diminished. Looking next summer to go down another 25-50 mg if he tolerates it. Wean from AED's altogether starting at age 15 where his risk of abnormal EEG diminishes. Most neurologists are quite aware of tics as side effect with some of the AED's. Lots of research to support and validate it. In our case, we HAVE to have an AED and it was a matter of the one with most benefit with the least side effects. Benefits must outweigh risks. There has been no silver bullet- Lamictal has been the best "all round" for our DS12. For my DS- I would like to have LAM-PRA Create my own custon AED- little bit of Lamictal with a little bit of Keppra....I like some of what each drug did for him but not so much the single drug alone. Adding Prozac to Lamictal has helped with some of the depression/anxiety/OCD/compulsive vocal tics that Lamictal was not doing alone. However, after 1.5 years- I would like to change to Zoloft at Christmas time or next summer. Prozac effects seem to be waning and Storch and Murphy recommend Zoloft over Prozac for adolescents....see if change would make much difference. My son could cycle thru some oppositional, defiant, argumentative, angry, depressed stages prior to and even since Lamictal. After discovering PANDAS-there was a well set pattern of behaviors following Strep episodes, in which, this subset of behaviors followed within an exact patterns of others. Sans Strep episodes- I would say that Lamictal is more mood stabilizing for these behaviors and as Nancy says- less fixating on continuing these behaviors. Generally, I would describe my son's underlying mood (without meds) as on the depression/anxiety side not angry/oppositional/defiant side although we have seen some of those behaviors over the years- they are more the secondary behaviors with the former being primary. He seems to get more enjoyment out of life on the Lamictal/Prozac combo than on Keppra or Lamictal alone. HTH- feel like I am rambling....

Has your child had an EEG? The reason I ask is that it is most unusual to have a child with "receptive language" delay higher than expressive. Of course, I found this out the "hard way" but the end result when this occurred with my child was he was ultimately diagnosed with Landau Kleffner Syndrome (LKS). My son is likely dually diagnosed with PANDAS. He also has Central Auditory Processing Disorder. He has mild anxiety, some quirky OCD tendences and mild tic disorder. He is much improved but it has been a long 8 year long battle with us. LKS is very rare and trying to get able providers to diagnose or deal with this diagnosis is difficult. No different than PANDAs. Anyway, one of the things with LKS is that children lose the verbal realm but do not lose the visual realm. My son when he was tested at age 8 was significantly behind receptive and expressive verbally, reading etc , however, his visual IQ was tested to be that of an 18 year old. IF she has had IQ testing- any testing that is "all over" with great highs and lows in area or doesn't make sense should be evaluated more closely. I would suggest by NeuroPsych to go over results, not just Dev Peds. I would also suggest a Neurolgy appt if she has not already been and ask for an overnight EEG. My son was ADOS negative thus did not meet criteria for Autism yet alot of his scoring looked like an Autism like profile. Don't let some egotistical doc worry you on what you should or should not be doing as a mother. He is not raising your child nor walking in your shoes daily. You can home school your daughter and still get her the help and resources that she needs for developmental delay, if that all it really is. We have 8 years of multiple specialists and only 2 have ever had any ideas and modalities that were helpful in anyway over what I was already doing, had researched or was working on to help my son get better. No doc is going to care as much as you do to do the right thing and not give up.

Yes, I would say that all PANDAS kids are at risk. Why is it not routinely tested- I have no idea?? I can tell you I know more about this process that most Internists, ER docs and Peds do. I had to school myself. My children love to challenge Mom (the nurse) and not get any run of the mill diseases. Boy, I could sink my teeth into something normal like asthma etc:) Something, I might actually know about- off the top of my head! Nah, they always had to get something that nobody had ever heard of that required a specialist and google search. I would advise going to your family doctor then get referral to Pediatric Nephrology NOT Urology ASAP.Many Nephrologist will not accept appt until after some 24 hour urine collections. US of the kidneys etc. which Peds/family doc may have to order. Nephrology will want their own baseline rule out testing before accepting for appt. I have a theory that we had a severe Strep strain in our home that effected both of my children the year my older one was 7 and the younger one was 4. I remember the Strep episode- my older son got it- July 4th week. Bad case, fever, Strep rash etc. My younger son was never sick, no symptoms (that I knew of?) My boys are now 15 and 12. My older one had response that effected his kidneys- thus, IgA nephropathy. He was followed for 5 years, as I said. He is Neuro-typcial and recovered from his IgA nephropathy.It never really goes away and can come back to haunt you in latter years- must follow with some regularity....he may need BP meds in future to protect kidneys- use ACE inhibitors. However, he no longer has to be followed by Nephrology...his Peds can do random urine checks for protein. As I said, luckily his case was not severe and he has done well but not all kids are so fortunate. Interestingly, we had a very smart female Nephrologist that treated him for "Suspected IgA Nephropathy"--the only way to "prove" disease is by kidney biopsy and due to his case not being severe- she did not want to put him through that. Even if she "proved it"- there would be no treatment (at his level) thus she chose not to prove anything and just monitor. She coded his visits as proteinuria and hematuria. The reason she did not want to prove his diagnosis was because she did not want to "label" him with a kidney disease. This was prior to Obama changes in insurance laws re: pre-existing conditions etc. She said, at that time, that if he was labeled with this then he would likely never qualify for insurance (life or health) separate from me or with any policy that looked at pre existing conditions. The other thing to consider was he would be exempted from any military service. Branches of government will not take recruits with this disease. He was 7 at the time- who knew, at that time, what his future goals and life desires might be?? We didn't biospy since she said even if it was positive- she wouldn't treat or do anything different. Just giving you some food for thought in case his case is not severe. Be careful in thinking you must "prove" this disease if there will be not treatment even if positive. My younger one had subsequent, slow, progressive neurological decline (suspected PANDAS child and MORE!!)after meeting or exceeding all developmental milestones when he on a normal developmental path from birth to age 4. He was on nobody's radar then within 2 years- was on everyone's radar. Hhhhhmmmm....think that same summer the Strep got his brain. Can I prove it- NO! But, too many of the pieces fit that link my children. Different diseases, same infectious organism (Strep), different organ response. Each had different flawed immune response. One got the kidneys, one got the brain. Can't help but think that age played a factor. Neurological maturity, BBB, pathways in the older one somewhat "protected" him. Looking back- now, that I know about PANDAS (did NOT then)- he had PANDAS type behaviors that were "sudden onset" at the same time as his IgA Nephropathy was diagnosed. However, with lengthy antibiotic treatment, at that time, for severe sinusitis- he recovered. This was just coincidental treatment by Peds and Allergist while he was going through all the other stuff with kidneys. He had irrational fears of abandonment, refused to participate in baseball camp which he had done the year before?, severe separation anxiety in kid that had never had it even when it was normal to have it like with 18 month olds, preschool etc. OCD behaviors, decline in Math and Writing skills, school phobia etc. He had been in pre school 2 years, kindergarten and 1st grade with no issues, AT ALL! Then in second grade- we are having to push him onto the bus and through the classroom door. It was weird and odd. We were baffled with no clue as to why. We thought it was just a stage and he just got better (likely from prolonged antibiotics although we didn't know this was the reason at the time). Never thought anything more about it until younger son started going through similar behaviors (MANY years later and we discovered PANDAS). I could have 2 PANDAS, atypical neurological children--- instead of 1?? Luckily, sequence of events and treatments early on in his disease process allowed my older one to recover. Without even knowing what the source, cause and effect of what was going on at the time. Dumb luck on our part. My younger one is improving but still a mess. Not NT. I likely would have NEVER picked up on my older son's IgA Nephropathy had it not been for the typical, little boys' habit of dribbling on the toilet seat (not lifting lid) when urinating AND a nurses' eye. He never really had any symptoms! He was in the shower and had peed prior to getting in- I was bringing him a towel and noted "bloody urine" dribble spots on the toilet seat. He was 7- Mom didn't watch him pee or help him shower anymore! I had him pee into a clear glass the next time he urinated and it was hematuria- bloody urine. That began our adventure into IgA Nephropathy. Anyway, that's our story. Hope you can get some answers from your family doc!

We had the same issues....after 7 years, too many specialists to count, all whom had their own spin and different diagnosis. None, of which, any two docs could "agree on"....I gave up!! I changed my focus from "diagnosis" to drilling down into my child's learning needs/style and how best to help him. Accommodations and modalities to work with his strengths and not his disabilities and weaknesses. This has been our recipe for success and improvement. Is he NT and perfect, NO. Is he better than where we started- YES!! We deal with the hand we were dealt. We continue to show an upward path of progress although not at the same rate as his NT peers. There was never any consensus. Too much waxing and waning with my child, too many outliers that didn't fit classic criteria for the diagnosis of this or that. Too many symptoms that came in and faded out, new ones arose, went away, others replaced. You know the drill. He looked like Autism, Asbergers, OCD, LKS, tic disorder, anxiety disorder, MR, speech apraxia, CAPD, sensory issues, Tourettes, PANDAS etc., etc. It was full blown craziness...I told them there is no way a child can be ALL of these things.I refused that he be an alphabet soup of diagnosis that he only fit bits and pieces of each one. I FINALLY defined my child---PPPFED---Purple Polka Dotted Flying Elephant Disease:)!! The IEP team just shakes their head and laughs when I tell them that that is his qualifying diagnosis for his IEP. I tell them I am as right as the rest of the "professional experts" that can't reach agreement either. With a folder that is 4 inches thick with psychoeducational and medical testing from various sources that all disagree---what can they say?? Between me, him and them (IEP team)---we came up with what works DESPITE what the experts said or didn't say. It has been trial and learn. Some bad medication decisions, some good. Reevaluate, change, fall back and punt Try a new strategy--it works--stick with it. Change doctors, more testing etc. I always relished testing---not for him---but for ME and IEP team to learn something new that may help him. See changes, progress etc. With a child that seemed to change everyday this was necessary. I learned to focus on the child's needs and not necessarily the diagnosis. Once, I reached this point, there was a certain amount of freedom and liberation from the medical world. It was up to "us" to come up with a formula that worked. And, yes- I fought many doctors along the way to get what I researched that I wanted to try. I had to research, learn, have reasoned arguments. Be more knowledgeable than the docs. Beat them at their own game! Had one Neurologist actually throw a Rx at me and run from the room because he had no counter points for my arguments. I am a nurse which helped, although, I have the greatest respect for non medical parents, on this forum and others, that don't have the medical back ground that fight similar fights being "self taught". I can only imagine that learning curve!! Seriously, he has an OHI qualifying diagnosis for his IEP which nobody will disagree with once they know the child. "Inconsistency is the hallmark of neurological disease." WHAT neurological disease could still be debated. My child has been nothing if not inconsistent. One day he can be a rocket scientist, the next day drooling in soup. I fought to prove LKS since that most fit the history and testing, which is his underlying OHI diagnosis BUT he still had docs that disagree. I don't care. I fought Autism since he was ADOS negative and had a leg to stand on with that! Mainly, due to no insurance reimbursement for that particular diagnosis (I AM a realist, after all!!) Bottom line, you sound like you are doing all the right things. I would worry less about the Aspberger's label and more about how that qualifies him for needed services. Focus his education and teaching style to his strengths--not his disabilities. His accommodations to his weaknesses. I am from the Church of What Works! After 7 years- that's my motto. My son is entering Middle school- big transition year-UUGGHH! I have spent hours in IEP meeting over the last couple weeks. We will see what happens with current plan and reevaluate in 4-6 weeks. If it is not working we will reevaluate and change plan. THEY know that and I am brutally honest with any reservations and concerns with the middle school plan. Wish us luck!

We had the same issues....after 7 years, too many specialists to count, all whom had their own spin and different diagnosis. None, of which, any two docs could "agree on"....I gave up!! I changed my focus from "diagnosis" to drilling down into my child's learning needs/style and how best to help him. Accommodations and modalities to work with his strengths and not his disabilities and weaknesses. This has been our recipe for success and improvement. Is he NT and perfect, NO. Is he better than where we started- YES!! We deal with the hand we were dealt. We continue to show an upward path of progress although not at the same rate as his NT peers. There was never any consensus. Too much waxing and waning with my child, too many outliers that didn't fit classic criteria for the diagnosis of this or that. Too many symptoms that came in and faded out, new ones arose, went away, others replaced. You know the drill. He looked like Autism, Asbergers, OCD, LKS, tic disorder, anxiety disorder, MR, speech apraxia, CAPD, sensory issues, Tourettes, PANDAS etc., etc. It was full blown craziness...I told them there is no way a child can be ALL of these things.I refused that he be an alphabet soup of diagnosis that he only fit bits and pieces of each one. I FINALLY defined my child---PPPFED---Purple Polka Dotted Flying Elephant Disease:)!! The IEP team just shakes their head and laughs when I tell them that that is his qualifying diagnosis for his IEP. I tell them I am as right as the rest of the "professional experts" that can't reach agreement either. With a folder that is 4 inches thick with psychoeducational and medical testing from various sources that all disagree---what can they say?? Between me, him and them (IEP team)---we came up with what works DESPITE what the experts said or didn't say. It has been trial and learn. Some bad medication decisions, some good. Reevaluate, change, fall back and punt Try a new strategy--it works--stick with it. Change doctors, more testing etc. I always relished testing---not for him---but for ME and IEP team to learn something new that may help him. See changes, progress etc. With a child that seemed to change everyday this was necessary. I learned to focus on the child's needs and not necessarily the diagnosis. Once, I reached this point, there was a certain amount of freedom and liberation from the medical world. It was up to "us" to come up with a formula that worked. And, yes- I fought many doctors along the way to get what I researched that I wanted to try. I had to research, learn, have reasoned arguments. Be more knowledgeable than the docs. Beat them at their own game! Had one Neurologist actually throw a Rx at me and run from the room because he had no counter points for my arguments. I am a nurse which helped, although, I have the greatest respect for non medical parents, on this forum and others, that don't have the medical back ground that fight similar fights being "self taught". I can only imagine that learning curve!! Seriously, he has an OHI qualifying diagnosis for his IEP which nobody will disagree with once they know the child. "Inconsistency is the hallmark of neurological disease." WHAT neurological disease could still be debated. My child has been nothing if not inconsistent. One day he can be a rocket scientist, the next day drooling in soup. I fought to prove LKS since that most fit the history and testing, which is his underlying OHI diagnosis BUT he still had docs that disagree. I don't care. I fought Autism since he was ADOS negative and had a leg to stand on with that! Mainly, due to no insurance reimbursement for that particular diagnosis (I AM a realist, after all!!) Bottom line, you sound like you are doing all the right things. I would worry less about the Aspberger's label and more about how that qualifies him for needed services. Focus his education and teaching style to his strengths--not his disabilities. His accommodations to his weaknesses. I am from the Church of What Works! After 7 years- that's my motto. My son is entering Middle school- big transition year-UUGGHH! I have spent hours in IEP meeting over the last couple weeks. We will see what happens with current plan and reevaluate in 4-6 weeks. If it is not working we will reevaluate and change plan. THEY know that and I am brutally honest with any reservations and concerns with the middle school plan. Wish us luck!