AmySLP

Well, we learned that Augmentin ES does not exist in chewables, so to get close to the dosage my daughter was prescribed chewable 2 Augmentin & 1 chewable Amoxicillian. There was clearly an attempt to make the Augmentin kids friendly with some sort of flavor-but they are horrible (yes, I did try a small piece after my daughter cringed and made horrible faces while chewing it) Just looking at the so called "chewable" Amox made me question how it would taste (it looked like a white pill). We did cut this in half & she swallowed it in applesause whole. We will crush the Augmentin from now on. At least they are not getting spit right back at me like the liquid was & my daughter feels like a big girl taking the pills whole.

Whipped cream-she'd always want to take her meds!!!

Thinking about OCD behaviors all day~realizing that so many parents including myself with my own daughter write these off as quirks their kids have. When I talk about my 6 y/o daughter's PANDAS symtpoms I think of her facial and vocal tics first, b/c it's just so black and white. But the movements like shoulder rolling, headstanding, and history of touching her thumb to each finger, doing all these things in threes often-those are probably considered OCD behaviors-is that right? These things would probably not come up in a first time speech eval, unless they were really interferring with the child's activities-in my own daughter's case she could do them and then move on. I know someone mentioned a book related to OCD-I think I will order it this weekend.

Just called our pediatrician for these chewables-I wish I had known they existed b/c I have always questioned the true shelf life of Augmentin liquid. Anyhow, my daughter has been spitting the Augmenin liquid right out the last few days (said she's tired of taking it and it now tastes horrible-yes we flavor it with flavor-x & she had it narrowed down to two she would accept). She insists that they are not mixing it right and it is a battle to get it in her everyday, on top of the probiotics, vitamins and fish oil. Does anyone's child use or used these previously? Apparently they are available in ES & she is to eat 3 200 mg tablets at a time. Thanks, Amy

Vickie, Certainly we see kids that have speech & sensory issues-Is it common? In my experience-no. From 2003-2009 I worked as an evaluator in a large early intervention (b-5 yr old primarily) and did about 100 evals/year & twice as many screenings. I oversaw a dept of 15 SLPs so in total we probably did 400-500 evals/year. Sensory problems are increasing no doubt, but I saw many more pure speech/language delays than anything else-percentage wise. When kids demonstrated sensory concerns on eval or their parents reported these at home, we had them screened by one of our OTs-usually with a sensory questionairre. If they got a certain score, they came back for an OT eval. But this was by no means the norm. Honestly, when we saw kids that screamed SENSORY PROBLEMS we were always thinking along the lines of ASD. I did not know about PANDAS then, as my daughter was just in her initial exacerbation & had just been dx when I left that position. Now the OCD-I find this very strange. I can't say even say I can think of one who had OCD behaviors, with the exception of a few dx ASD kids (who were school age children I treated in the same setting). I have never seen or heard of any correlation there. Jill, hoping you'll weigh in on these. We do have another SLP on the forum from VA, but I'm sorry I can't recall her name. Love to get there input too! Amy

I feel the same way about ASHA-right in my backyard. I have friends in Philly I could stay with but we travel so much to CT to see Dr. B & I was just in Boston getting certified for Lee Silverman Voice Tx., that I'll have to pass on ASHA. Just don't have the motivation or desire to pull it together & go. Plus the ASHA dues notice came the other day, so not sure I can convince my husband to send them registration fees for the conf on top of those dues. I agree the incidence of neuro. problems in the general population is rising beyond incidence numbers we have all heard before. For a long time I said to my SLP/OT/PT colleagues that I felt so blessed to have typically developing children when all it seemed like I did all day was evaluate kids with issues. I never suspected that my child could develop this at 4. I thought we could all breathe a sigh of relief when our kids turned three and did not show regression in skills suggesting ASD---boy were we wrong. But that is what I was taught just 10 short years ago in grad school....PANDAS and such-these acquired disorders must begin to reach the literature. Several of my friends work in the University setting with Grad students...I tell them about PANDAS all the time, although there has never been a direct speech correlation (that's why a survey might be a starting point)so that there may be some chance that news of it will spread.

Jill, I work in a skilled facility that has now decided to take critically ill pts. We have so many people on isolation when they come to us-but they are not my concern. It's the people who are not and them radomly you get an e-mail that they are now on isolation (and yes I've treated them for the last 4 days without anything but my labcoat-what's that doing for me? absolutely nothing!) I went to the ER myself in late August with URI/pneumonia symptoms. All I wanted them to do was r/o myco p. They sort of laughed at me when they learned I worked in long term care. They told me it's everywhere in that setting. Here I'm worried about all these MRSA postitive people & I have myco p. all around me...I feel like I should wear a mask daily, but that'd be weird. I hope everyday I am not bringing home something to my children. And on top of that, my husband is a dieititian in long term care-so we are both in that setting. Of course, he is not working in peoples face like I do everyday. However, these people do not get strep (or maybe not getting tested for it!) Seems like being around kids put me in contact with strep more frequently. You can't avoid germs so we just need to heal our kids. I've been following your story in regard to IVIG & co-infections and such. It is so much to figure out-how do you keep your kids on your caseload straight when you have so much going on at home. I'm greatful to be able to take a break from kids for a while-but I do miss treating them. If I could only be assured my daughter would remain stable, I'd pursue some peds per diem, but I know, as soon as I do, she'll have a back slide. Hang in there....Amy -----Are you going to the ASHA convention?

I have never been more thankful that we have the option of a traditional insurance plan now that we are battling PANDAS. Yes, we pay more for it, but it is worth every penny not to need referrals and to go anywhere you choose.

Kmom- I was so hoping your story was going in the direction that your child did NOT get lice. Wouldn't it be great if, with all we have to deal with already, this would be true-somehow these parasites would not find our kids appealing. I am so paranoid about this-never have experienced it with my girls, but I check everyday when I'm doing there hair determined I will catch it early if present. As if we need another thing to worry about!

I talked to Dr. B by phone prior to our appt for this same reason. I wanted to get my daughter on something and wanted to know what he recommended. He told me to ask our ped for Zith and gave me the appropriate dosage. Maybe you could call & ask that question-when I did that prior to our appt. the recept., Stella, said hold on I'll get him on the phone. I then called my ped & said this is what the specialist said she needs to be on prior to our appt so he can assess how she's doing at that time. Now my daughter did have a dx of PANDAS from Dr L prior, so maybe that made Dr B more comfortable in telling me what to do leading up to the appt. Good luck!

In Apraxia, you see very poor speech intelligibility, that does not respond to typical articulation therapy. Sometimes these kids have groping movements when they try to speak, particularly when they are young. These kids usually have pretty good auditory comprehension skills, but the motor plan for speech (sending the signal from the brain) is thought to be interrupted. I've seen apraxia purely in kids with no other language problems, just speech and they are much easier to dx as Apraxic (versus a phonological impairment) which can look very similiar in younger kids. I have seen children with autism or PDD who have apraxia as well, this sometimes takes longer to figure out, b/c you need to improve their language skills & social pragmatic skills to really make a good differential diagnosis here, but thinking along those lines and knowing there are children with PANDAS & a dx somewhere on the autism spectrum-I do believe this is something we will/can see in PANDAS kids. It really opens your eyes to how PANDAS is a spectrum in and of itself. I would be really interested in knowing of how many kids have had speech/articulation issues & also have PANDAS, but I have no idea how to create one of those surveys. In hindsight, I can remember a child I evaluated about 3-4 years ago. I remember his mom telling me about him being sick with strep all the time. He had his tonsils out at 3, which struck me as so young. He appeared to be on the autism spectrum, but not precisely. I think of him often and knowing what I know now, wonder if he could have PANDAS. Interestingly enough his father was not working b/c he had psych problems, which the mother did share with us b/c she was so concerned that that was what was happening with her son. I can't even recall his name, but I remember everything about him. I always hope I'll run into them in the community to inquire about him. I have worked with adults for the last 18 months. I had to find a more PT & flexible job due to my daughter's PANDAS. I wonder how many kids I would think potentially have PANDAS if I still worked as an evaluator-I think for now I am better off where I am. I do make sure my former pediatric colleges and any other therapists I know in the community know about PANDAS, so they can be thinking this when they hear about sudden onset of behaviors.

Just wanted to let you know that I bought small probiotic capsules-it's a Jr formula. She can do them well in pudding or applesauce ( I work in a nursing home & wonder why I hadn't thought to try this months ago!). Anyhow, this way it's not the antibiotic and thus not a problem if she can;t get one down-but again today she did it. Also I called the pharmacy and learned that Augementin is available in a chewable in I think 400 mg & 200 mg doses. The pills are coated and can be cut, but not crushed & have more clavaic (sp?)acid. I know there is a max based on weight so I think I'll call Dr B about the chewables tomorrow. The liquids getting unbearable to give her-today she spit it back at me twice! I had to walk away the second time and remind myself this is the PANDAS. Ugh, I really need those pills in time for tomorrow's dose!

My daughter is also being treated by Dr. B on ABX so I was surprised by the thought that he would not go more than a few months with ABX or is it that he wouldn't if they were not working (rather at that time trying IVIG). My daughter too will be on them 1 yr a least before we reduce her dose or stop it. My understanding is that he feels some kids will need these for years to some degree. My daughter is young (6, dx at age 4 by Latimer & started treatment then). She responds well to abx and does poorly without them (I've tried several times to take her off) She has primarily tics and choreiform movements. I have thought about trying the OLE that stephanie talked about b/c my daughter does have what I would consider a milder case compared to many on this forum, so thinking that if Stephanie's children who were severe are doing well maybe mine will too. SHe is so susceptible to strep that it does scare me to go off abx. I've decided to wait it out until late spring & try OLE at that time, if she continues to do well. The plan with Dr B is to reduce or eliminate the ABX at that time, so the timing may be right. Although with PANDAS we all know the best laid plans may never come to be. So at this point we are taking it day be day with ABX. My daughter is so done with liquids ABX that she is trying really hard to learn to swallow pills-yesterday she did it for the first time! Good luck- I hope the new med change brings about better results for your son. Long term abx are scary enough, so I understand your concern about IVIG.

I wonder about the accuracy of the Apraxia dx at age 3-particularly because you say her speech is perfect now. Sounds like it might have been more phonological or developmental because kids with true apraxia of speech usually have problems with preciseness of articulation for years into the teenage years or adult hood. Because there is no "test" for Apraxia, more of a dx. that has too be teased out, it could be that it was misdiagnosed as such. I have not read a whole lot regarding speech (articulation) and PANDAS on the forum, so I never suspected a correlation. There are kids who stutter as a result of what I think is tic based. The key here is early intervention which you sought. Always glad to hear a speech success story. JAG10 is also a Speech Pathologist-she may have more insight into this as well.

My 50 lb daughter took 250 mg. Currently on Augentin ES 600mg daily (prophylaxis) b/c Azith did not take away all her tics. I think It's a good place to start & see how your child responds since your doc is willing to prescribe. I have a non-exisitent titer kid, despite months and months of positive strep rapids and cultures-so it makes me crazy when I hear that a doc does not realize that this is a possibility. I have seen it before my eyes.

I think that 250 dose is what Dr B had my 50 lb daughter on in May/June until we switched to Augmentin ES b/c the tics/choreiform movements were not completely resolved. It seems low for a 90lb child.

I would see a Lyme specialist first, knowing that your son has had a lot of tic bites in the past and even more recently. Ruling out this and other co-infections seems like the first step. He has more of a significant history of this than URI, strep-so I'd think you'd start here.

PM me your e-mail and I'll forward you Dr B's list

After 6 months of a strep infection that my then 4 y/o daughter could not get rid of, she contracted EBV. Her tics began at this time. Prior to that a few compulsive behaviors and emotional lability, but it seems it was the EBV that brought out the tics, which is her primary symptom these days. THe good news is she's 6 is well managed on antibiotics. Good Luck!

tics and choreiform movements and compulsive movements (head standing) are primary for my daughter with mild OCD & emotional lability-seems like some kids are predominant in one or the other.

So sorry to hear that she's had a backslide. I hope this is very temporary and that Dr. B will have a solution for you.

That's intersting about this Rochester doc...I live in Binghamton NY & when we met with a new ped. nearly 2 yrs ago he had heard of PANDAS and knew somewhat how to proceed b/c of info this doc gave at a seminar in which a doc from Rochester spoke about it. He was never able to come up with his name for me so I'm anxious to look this up. WHere is is this that he is speaking? I see his name is Dr Michael Pichichero the location is in VA. Not sure of his stand as the title presentation is PANDAS:Does it really exist and then there is a discussion in a break-away group about it. I'll have to ask my ped if this is who he recalls learning about PANDAS from. I don;t recall seeing his name on the board or on any list either.

Not sure if you saw that her hiccups were "cured" with accupuncture & per the report that was the end of it. Considering how much it takes to cure our kids, does it really seem possible then. Wouldn't the hiccups if they were a tic come back with an exacerbation at some point? I would hate to see PANDAS get caught up & be assoc with this story.

If you PM me your e-mail I can e-mail you Dr. B's list of initial testing-it's quite extensive. Amy

Laurie, I am aware of a chiropractor whose wife is an OT. His office is in Binghamton/Johnson City. He has extra, ongoing training in neuro. He noticed some problems in my PANDAS daughter, neurologically, before I told him anything about that dx (I took her for a simple adjustment after a fall down the steps!)His wife also does some work at his practice on Saturdays last I knew. She saw my youngest for sensory concerns last year. They are really wonderful and sensitive practioners. PM me if you want their contact info. Amy