pixiesmommy

No, Pixie is not on any antiobiotics, though Dr. K told us about putting her on Augmentin for a year after IVIG. School has been sending work home, and actually, Pixie's more willing to do the work at home with me than at school right now, so that's not actually that bad. To me, her most pressing symptoms are 1) full body tics/dystonic movement at this point, 2) extremely low frustration threshold (the least disappointment seems to be enough to send her over the edge), and 3) sleep issues (difficulty settling in for the night). If I could stay home all day long and just care for her, it wouldn't be that bad. She does okay when she has someone's absolute 1-on-1 undivided attention 24/7. Unfortunately, that's just not realistic, particularly in a school setting and with a 2-year-old sister. Dan

Florastor was the one Dr K recommended for us. He said not to worry about the S. Thermophilis that that is just a rumor going around and shouldn't affect our PANDAS kids. He said Walgreens carries it and it doesn't have to be refrigerated and it's about $22/month, but so far we can't find it. Going to search online today.

Got ours this morning as well. Pixie's was 140 while not in an exacerbation. Will they send another kit to have tested while IN an exacerbation? Just curious since I have read some ppl on the board seem to have been able to send in another sample. Hopefully we will be getting IVIG next week and won't need to worry about that, but still....

Dr K uses 348.39 and 392.9 I found this link helpful to look up codes: http://icd9cm.chrisendres.com/

Is there anyone here who has a child who is recovered/recovering who would be willing to talk to her? She is 9 today and was pulled from school yesterday. Naturally, she doesn't fully understand the consequences of not being able to return to school or what is going on in her brain. She says she can't help it (and we believe her) and that no one understands and she wishes she could meet more kids like her. I told her we would try to reach out and figure something out. Ideas?

Thanks for all the replies. I would definitely appreciate being able to talk to any of you by phone who have BTDT. We are in IL and (thankfully!) just half an hour away from Dr K. I wish I had know he was here and about PANDAS years sooner. Pixie is now completely med-free. We weaned the Abilify out about 2 weeks ago, and the Prozac about 2 weeks before that. She has what the psych called EPS because she started shrugging her shoulder and we have been told she can't be on certain psych meds anymore. I'm not "pro" meds anyway, but we may have to do something in the short term to just survive her wrath. We got the formal PANDAS diagnosis the night she went to the ER, by phone with Dr K, just based on her history and the steroid burst 5 day diagnostics/14 day observation that we did. She is not on any antibiotics at all. Nothing. I find it ironic that she was in school ONE day (Friday) and complained immediately of sore throat and BAM behaviors started up. She is in a private school for gifted children, and they can dismiss her at will, so technically they don't have to work with us at all... and since we have paid them the full tuition and cant' get it back, I doubt they will, but am hopeful. If not, we will look into public services. Thank you all for feedback. I think it's ironic too that birthdays are involved... what is the connection there? Something triggering in the brain? One of her therapists last year said she thought the fevers were a physical symptom related to PTSD and wondered if someone had abused her. Does the brain remember stress from the birth canal? (Her birth was uneventful from my end, though I was given something in my IV to help her relax since she was slightly turned to the side...) Just speculating, obviously!!! Manda

Pixie had the ER visit I posted about but was released into our care later that night w/o treatment. She is having random screaming and crying jags- the longest one being 2 hours of animal screaming 2 nights ago at bedtime. School said she looked and acted unwell and they can't have her there. She threw the contents of her desk out of the classroom door yesterday and then today attacked her best friend at recess, kicking and hitting. That was the last straw. My husband is a teacher and is taking 2 weeks of sick leave, maybe more, while we figure out what to do. Dr K moved our appt up a day to tomorrow to talk about IVIG. How long is the typical wait list??? She is in bed now screaming that the inside of her nose hurts. We just don't know what to do with her. Dr K doesn't want her on any psychotropic drugs, so we are dosing her with Benadryl and Motrin at bedtime, but the rest of the day??? Our insurance covers 1K/month for a home caregiver, but that won't go very far. What do you do with your child when they are so violent or manic or whatever that you can't control them? We have a 2 yr old that we have to keep safe too, and I cannot have both of them alone in my care. Just so confused, upset and heartbroken tonight. We were actually doing pretty well on Abilify and then she had the diagnostic 5 days of steroids and BAM. BUT it's the time of year too... tomorrow is her birthday and we go through a fever and behavioral prob period this time each year.

We got ours via email today also and

All I know is that he told us 2 weeks ago that he would be leaving for Europe in a few days (and he just got back 2 days ago, so that means he was there about a week??) and he said, "They are working on a new way to diagnosis PANDAS and I am going to find out what they know." But if he learned anything, I have no idea. HTH

We had 5 days of steroids with Dr K. We were to observe for 14 days (including the 5 of steroids) and report back. We had a complete turn-around. She was being creative, she was communicative. We could grocery shop. She would shower.... Then day 13... slightly bad. But not the worst. Then day 14.... she is at the ER right now with my husband. We literally SAT on her to restrain her all day. She threw her shoes at my husband's head when he let go of her for a moment in the ER waiting room. She kicked the hospital staff. They are calling to consult with Dr K to see if they can sedate her for the night, because DH went AMA and refused to admit/transfer her to the psych unit at another hospital. Luckily the dr they are dealing with said he also thinks it is steroid withdrawl, but has no idea what PANDAS is, of course, and won't do a thing without Dr K ordering it directly.

Kathy emailed me yesterday and said she hopes to have a batch of results out next week.

I mistyped. It's S. Thermopolis, but I don't know how to adjust the title. The S for Streptococcus. It's also spelled "Thermophilous" when I google.

I read in a blog of a mom with a PANDAS child that she avoids L. Thermopolis and I was wondering if anyone here also avoids it. Every yogurt in the supermarket (other than Kefir) had it today when I checked. Thoughts?

We started the steroids immediately after the blood draw for Cunningham, but we are seeing Dr K and the steroids are only diagnostics (not treatment) in our case. I would say if you think they will help, to start them immediately. I don't see why you would have to wait for any results, assuming all diagnostic blood work is drawn PRIOR to starting any treatment.

Someone asked on my other thread about what exactly Dr K ordered that was different from what the Cunningham study runs. Here is the actual text from the prescription pad, as well as I can make it out: Dg, Encephalopathy next line is hard to read but looks like : AntiDNze & Titers Mycoplasma Pneumonia I-G-G-ig A (receptionist translated this line as IG-M but it looks like an A to me ?)

From this blog: gfcfblog.blogspot.com/search/label/ISSUES%3A%20Strep The extracts she gives are: Olive Leaf Oil of Oregano and says she has read to AVOID probiotics and yogurt with a strep strain in it (S. Thermophilus). I found that fascinating because DD used to be "addicted" to yogurt. She was eating so much yogurt at one point that it was scary and I stopped buying it. Everyone laughed and said I was crazy because yogurt is good for you. Maybe there was something instinctive going on... --------------------- In another post I saw a method for washing hair and I wanted to add my own- sometimes when we are going through a really bad sensory stage, I let DD climb on the kitchen counter and lie down with her neck on the rim of the sink (with rolled up towel) and another towel folded over her eyes (she holds it tightly in place) while I use the kitchen sprayer to wash her hair. Sometimes singing while doing things helps, as does counting or counting backwards so that she can anticipate an end (such as for hair drying.) Also for hair drying, she likes to hold a towel around her neck so that her neck does not feel the hot air. Another tip is to do typical things in a dimly lit room or in near dark since she is also extremely light sensitive. In the car she uses noise-cancelling headphones (the kind you might use for lawn mowing) bought from Amazon. I have also read that earplugs (the wax kind for swimming) work fairly well and would be very portable. For auto-flushing toilets, put a post-it note on the sensor to keep it from flushing loudly and unexpectedly. She also seems to do better with white noise at night since she is a light sleeper and we have both a fan and a white noise machine ($10 at walmart) that she uses.

We sent ours last week and she emailed to confirm it was received (Kathy did, that is) and said she will be running a batch on Tuesday and that we should have results sometime this week via email. I assume yours will be in the same batch

SOO much of this hits home!! The crawling out of the room b/c you don't want to wake them, the frequent night wakings due to light sleeping, etc. The spinning, the liking to hang upside down, the picky eating, on and on and on... What is the wiping thing? My DD won't wipe after urinating no matter what and I wonder if that is a SID thing or a PANDAS thing or just a thing!?

We do Feingold to try to eliminate as much as possible, and limit plastic in our home. Plastic grocery bags are supposed to be the #1 off-gasser in the average home, so we use reusable bags. I don't use any cleaning products other than vinegar, baking soda and elbow grease. We also just bought a Berkey water filter w/extra filters for fluoride removal. It's supposed to filter out any toxins other than minerals that you need. It is the best tasting water we've ever had, regardless!! Totally worth the investment, IMO. I think the toxins MUST affect us... there are so many weird health things going on. There are toxins everywhere- in our food, in everything (cups, bowls, carpet, etc) in our homes, in medications and vaccines... in the air, in the water.... it goes on and on. I have a friend who is really determined to avoid as many toxins as possible. It's incredible (and sad) that we have to put so much EFFORT into living a non-toxic life. You can read her blog here: nontoxicmama.com

We went to get the bloodwork and they could not read Dr K's handwriting, so no bloodwork yet for us Once we clarify what all he is ordering, I will list it here. I'm still confused though about the ASO and Anti-DNAse B. If that does not show/prove anything, then why order it? Would it be for future comparisons? Also, I'm confused about why some drs are seeming to treat w/steroids (in addition to using it for diagnostics) versus the IVIG. He said he had seen 5 days of steroids have a lasting effect for as long as 96 days. Is one more dangerous than another? He said he was going to be in Germany next week because they are in the process of using a new diagnostic tool for PANDAS and he wants to learn about it. I wonder if he will start using something new when he returns. I also talked to him about using a PET scan and participating in the study in Detroit, but he said a PET scans and/or MRIs are useless. I did reading about PET vs. MRI when looking at the basal ganglia and it sounds like apples vs. oranges. I wonder, even if he thinks it is useless (and maybe it is to him), if we should still have a PET done, and how that would impact any insurance coverage probs if it DOES show issues in the basal ganglia. So many questions are swirling around in my mind....

Sorry, sometimes I get lost with all the lingo as I am trying to absorb!! Forgive me for confusing the two and Thank you so much for clarifying!! Dr K said the tests would tell him if she had had strep in the last YEAR though!!!

ASO titers and Anti D Nase B (I'm sure I spelled that wrong.) Those are the same as Cunningham, correct? I think he just wanted blood drawn for himself as well as for the study so that he could be sure we got the results back. He said we should get the results back from him as soon as Friday.

So... we printed off a list of symptoms we have seen in the past and presently and took that with the most pertinent (we felt) tests, bloodwork results, etc and gave them to Dr K first thing. He immediately nodded and said she is classic PANDAS. He circled all the ones that jumped out at him- lots of strep in past few years, changes in speech/babytalk/fake languages, paranoia/hallucinations, history of unexplained fevers, bedwetting (sudden onset), tics, and a few more... said these are classic symptoms and the other things vary from child to child and is just the interesting icing on the cake. For those who have never seen him, let me tell you, he is a breath of fresh air!!! He not only listened, but he rattled off lists of symptoms that we had not even THOUGHT to include in our list and it was right on the money. It brought tears to my eyes. He said we get so caught up in getting our kids through the bad patches and waiting for the other shoe to drop that our expectations become lowered and then you start to overlook things when you can just make it through the day. He is SO right. Her whole personality has been lost, including her joy for life, even when we are having a "good" patch. He suggested leaving her on the Abilify 3mg if the psych wants to, or eliminating it on Friday if we need to because of the EPS (shoulder spasm), but either way to go ahead and get some bloodwork done. He wants us to get both done at once- his and Dr Cunningham's. He is actually part of the Cunningham study it sounds like (they even had kits in their office for bloodwork/serum collection for her.) Then we are going to do 5 days of steroids (Prednisolone- which is liquid Prednisone) and observe for a total of 14 days (including the 5 she is medicated.) My husband and I, as well as my ILs are to observe her and write about what we see, independently, without sharing our conclusions with each other. Then we are to email him the results at the end of the 14 days. He said not to get hung up on the details. The steroids are a diagnostic tool... if she improves then she definitely has PANDAS, and he said it would be very black and white (the difference in her behaviors.) Since she has probably had PANDAS for more than a year, and probably more than a few years, he recommended going straight for the IVIG treatment due to that and her age (9.) It felt like SUCH a simple visit.... almost TOO easy, after all we have been through these past few years with her. It was so refreshing to see someone look at her holistically (physical symptoms of fever, etc and behavioral of OCD, etc.) I wish we had found him sooner, but alas, there is a reason for everything. Tomorrow we are off to get blood drawn and start the meds and then we wait!!!

I'm nervous and hopeful!!! Please keep us in your thoughts/pray/send positive energy our way!! Manda

We are near Chicago, IL We have the Cunningham box, but not clear if she is having an episode. It's been a wild week here- DH and I have both had a stomach bug and I have not had as much contact with her as usual to really observe what is going on. We will definitely do the bloodwork before any treatment, whether it be steroid or antibiotic. Our psych has heard of PANDAS and was interested in learning more from Dr K and wrote his name down to look at his site. He specifically said, "I hope I can learn from him," and was supportive of our visit. We are to call the psych on Friday. Dr K is on Wed. We'll discuss meds with him and where to go from here. Currently she is on 3 mg Abilify and 25mg Benadryl at night.