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.