Phasmid

Using a keyboard is a good idea and should be written into an IEP... assuming he will write on a keyboard even. My son made much progress with concept webs/maps. Use a blank unlined sheet. The whole sheet of lined paper was way too much to tackle for him- very intimidating to look at because to him, every line had to be filled up, or it wasn't "finished." Blank sheets took some of the anxiety away. Try using a soft, friendly color as well, rather than stark white. When my son was dealing with this, he could more easily tackle the task if he was faced given a main concept/theme in a central bubble (maybe write it there for him as he watches), and just two or three smaller bubbles attached to that, it is more "doable." If you can encourage him to write the theme in the central bubble, he will experience success and that will help. It should only be one word- that way he'll more likely be able to do it. After he can write the theme/title word, have him choose the word that represents or "sums up" the first body paragraph, and write it in one of the smaller bubbles, etc. The idea here is that he adds as he goes along depending on how much he can handle. If he can continue, have him add his own smaller bubble to the first small bubble, and then choose the next word. With a skeleton created, it MAY be easier for him to go back and fill in the spaces with a sentence. The lined paper was terrifying for my son. He would panic if he crossed a line, wrote to big, small, etc. The thicker blank paper will take more erasing, and this boy should feel that erasing is okay. Hope that helps!

The important bit of information in this is that they are both caused by Streptococcal infection and need to be treated with antibiotics.

Oh, thanks. I'm sure it will pass with time, but it's just so incredible perplexing and frustrating. Like you all don't know that...

OMG! WOW!!! Thanks for this!!!!

Is it only high dose IVIG that would cause a worsening of symptoms? How long after infusion will this happen? How long does it last? What is the explanation for it according to this doc? My ds12 had low "replacement" dose on Jan. 6. Things got way worse this week in terms of his "body fat" obsession, as well as the ocd while reading. Been a long time since I've been scared over something he's doing, but night before last, I was ill! Instead of him getting "stuck" on a sentence, and repeating the sentence over and over, he got stuck on a LETTER and was saying, "ttttttttttttttt........." and "sssssssssss." Very scary. Now his doc wants him seen ASAP by neurologist (I have to drive four hours for one of THEM too!) HOWEVER.... last night we read together for a test today. I read aloud mostly. Then, with my stomach in my throat, I asked him to read aloud, and then to himself. It is only when reading silently that the "sticking" happens (who knows why?) and he switches from reading silently, to reading aloud with repetition or stutter. When he read aloud he did fine. When he read silently, a paragraph, he didn't repeat. Could it have come and gone so quickly? When I asked ds about his reading last night he said he knew he did better and then commented about the night before, saying "The other night I even got stuck on letters, Mom. Things are getting smaller." I tried to reinforce last night's success so he remembers that he CAN read. Hoping this is a "flipping back" or temporary worsening after IVIG.

Hi Ange, glad you emerged from the shadows! Happy that you found information and strength here. Besides the rage fits, does your son have motor tics as well? So, no OC issues? What state are you in?

Could it be roseola? This comes with high fever though, and usually hits younger kids.

I have a dream... that someday, my brain will forget all that I have had to learn about disorders and diseases and syndromes and symptoms and infections and medications and treatments, so that I will go into a doctor's office and sound like an average parent, rather than being asked if I'm a doctor or nurse because of the way I talk, with terminology and textbook references and treatment suggestions rolling off my tongue like one of them.

I have a dream that some day I will spend time reading something other than posts on this forum...

That is scary! What did doc think???

Did you happen to run into poison ivy? No idea where you live.

Who knows, since none of my son's physicians have anything to go on since there hasn't been final word on what the results mean!

You need to go to your local urgent care clinic. Rashes are not something to take lightly.

http://ajp.psychiatr...full/159/8/1430 Interesting paper on the anorexia related to PANDAS and D8/17 expression. Buster, thanks for your reply. I am going to ask our doc about this. I plan to ask for my son's second infusion to be high dose. I anticipate problems, since his IVIG is covered under immune deficiency diagnosis. What happens if we do high dose? I think insurace will refuse to cover the extra product. Today, after increased sinus issues/stubborn sinus infection, his body ocd is REALLY bad. More worried about it now. [sORRY.. JUST REALIZED THIS TOPIC HAS BEEN DISCUSSED ALREADY, THE D8/17 STUFF]

Denise, I am really sad for you tonight. So sorry you are having a rough time again tonight. I am just throwing this out there, and this may be totally useless in terms of helping, but it's all I have. I suggest, until you have appt. with doc B., that you spend as much time outside having fun. Forget school right now as much as is possible. Take her out and let her be in nature somewhere- go for a walk, hike, whatever. Just spend as much time outside having fun. It is becoming more evident from studies that the less time children are outdoors, the more psychiatric issues they have. I know this is PANDAS, but I think it still applies. Get her tired. Let her get as much exercise as possible so that she is good and tired in the evening. Then, a nourishing meal, and hot bath, and melatonin. Get her to bed as early as possible. I hear the Melatonin is a life saver for these cases. Then you have the evening to collect yourself and recharge.

I know what you mean! So your child has not been on Azithromycin yet? It works great for my son. Our son's case is kinda baffling. Although he had very well documented strep pharyngitis history, things are muddied with more going on than strep probably. Going from most recent to back to 2003: May 2010 to present- Behavior issues and obsessions/compulsions related to PANDAS respond very well to azithromycin July 2010- Behavior issues respond well to steroid taper (30 days prednisone starting at 40mg) Dec. 2008/January 2009 - Sudden onset OCD after possible pneumonia and/or strep pharyngitis (coprolalia, facial motor tics) responded nearly overnight to Flagyl and vancomycin. Well enough to return to school after three weeks. He was on these antibiotics for Clostridium difficile positive stool test. I don't know if it was coincidence, or if this chronic C. diff. infection caused the neuropsych. symptoms. Anyway, symptoms resolved! April, 2004- Horrible, terrifying, grotesque sudden onset chorea, OCD. It started with facial tics, compulsions to look upward, then turned into full blown chorea, then retracing compulsions, and lots of types of OC behaviors. While getting worse, he was put on Nystatin in July for supposed Candidiasis. Symptoms gradually resolved from July to October. Some compulsive behaviors sustained. No motor or vocal tics that we recognized, but may have been there until the new episode in 2009. April, 2003- sudden, overnight onset of chorea type movements that involved trunk twisting. Resolved without treatment in about two weeks.

I don't mean to scare you, but when my son's symptoms changed from only motor tics to vocal tics, things got much worse very fast. I am only guessing, but my theory is that as the child ages, different centers of the brain are affected. What treatment does your child receive? The GOOD NEWS is that my son's vocal tics (may have been compulsions but I don't know how a vocal tic is differentiated from a compulsion) resolved with antibiotic treatments.

Wikipedia: Neopterin is a catabolic product of guanosine triphosphate (GTP), a purine nucleotide. Neopterin belongs to the chemical group known as pteridines. It is synthesised by macrophages upon stimulation with the cytokine interferon-gamma and is indicative of a pro-inflammatory immune status. Neopterin serves as a marker of cellular immune system activation

http://www.drgreene.com/azguide/tourette-syndrome In this popular web doc's article, TS and PANDAS can be "one in the same." Not everyone agrees with this. It may help to show this to your SIL so she can move beyond the fear and get going on trying to find help for her child.

Azithromycin works very well for my son.

What a sad situation. This sounds more like generalized anxiety disorder and possible PANDAS, than asthma. If you can somehow suggest that the "tic" may be related to something treatable, such as PANDAS, rather than TS/tics, which seem an untreatable disorder, she may be more open. Print and give to her as much literature on PANDAS as you can, so she can see that tics can be part of the PANDAS set of symptoms. Maybe you could help her find a doc who treats PANDAS and go with her. Anxiety can be a huge issue in PANDAS. But the home situation could very well cause that too. Denial is a common emotion to have at the start with all this. I think we all probably started there, if the initial diagnosis was Tourettes. I was there for sure. The very unwanted thoughts are part of PANDAS as well. I would say, although her home life could certainly be a root cause of her emotional troubles, the history of strep is a big red flag. The physician may not know about PANDAS. I would ask/suggest this to him/her up front about this. What state are you in?

Oh gosh, this gets so overwhelming. Just when you think you have one bud nipped, another one sprouts! To answer those who asked about antibiotics he is on: He has been on azithromycin since July, on/off. He's "on" right now. He will stay on now. Others he has been on = flagyl (for his C. diff., but "cured" his ocd very quickly), oral vancomycin after relapse on flagyl, azithromycin, Pen VK, and back to azithromycin. He is on 250mg. per day and he weighs 130 lbs. He was initially on 500mg. per day for 30 days. He has had 2 predisone tapering doses which worked well. He just had first IVIg, but low "replacement" dose. I am talking with his doc about doing a high dose next time. Just a reminder; my son is a very chronic case. We didn't know what was happening to him. So, he was sick from 2003 to 2009 without treatment. He resolved most major symptoms (which we thought were only vocal and motor tics) on his own each exacerbation. Here is a message I just got from Dr. K who was kind enough to answer my question about whether or not the disordered body image could be taken care of with low dose IVIg: "Disturbed body image develops later in the course of illness. This (if confirmed PANDAS) responds ONLY to high dose IVIG."

Hi, The CamK test is NOT technically a diagnostic test at the present time. The other tests have been approved for use in diagnoses of exposure and/or infection with Streptococcus. The diagnosis of PANDAS remains a clinical diagnosis. The tests that indicate presence or exposure of Strep are confusing when applying to a PANDAS diagnosis, but together with the clinical picture, they help. My son's present doc, (we are in CA too), never asked for any testing except for basic labs and immune panel, but went on presentation, history, and response to antibiotics.

My son's PANDAS doc gave him a total of about 25 grams in one day (2.5 hours) He will get ivig every 21 days

Phew... can't help but just wanted to say sorry to hear. And I thought I was having a bad day...