AmySLP

Dr. B said it is never supposed to be done simultaneously, but is almost always by practioners b/c it's uncomfortable-It's gotta be in the technique or the amount of fight in the kid that somehow impacts this result. I was dx. with strep m(& pneumonia) on Monday-Thank God she didn't need a strep test-we just upped her prophylaxis dose up to full strength for a week.

Just be sure he/she doesn't write off your child if those titers are not up-especially if your child has other evidence of strep (rapid or cultures).. My children are part of a subset of children whose titers do not rise, despite positive strep tests time after time. It is not necessary to have a rise in these titers to have PANDAS. Good Luck, Amy

http://www.latitudes.org/forums/index.php?showtopic=7772&st=0&p=63146&fromsearch=1entry63146

The only thing I can add if that the one time that the doc had sent out a culture on my daughter w/ a positive strep rapid, it was negative. He only sent it b/c he had already filled out the info on the send-out to the lab. Well my daughter is horrible when it comes to strep testing. The doc did both swabs simultaneously & the explaination from many on here was that it was likely that he did not get a good swabbing. Everyone felt it was good that the "good one" was used for the rapid, so that we got treated on ABX that day. At that time, my daughter had huge welt-like hives all over her body for 3-4 days & not until getting the ABX did she clear-right away. Dr. B also said that the error was likely in the technique of getting a good sample from the pharyngeal wall (especially on a kid that takes 3 people to hold down!) Hope this helps-I'll try to post the link to the responses I got when I posted this session. Amy

I just had testing for mycoplasma today myself & they did draw it at the doctor's lab after checking if they could. They had to send it to a special lab b/c the doc said it was a blood culture test. My kids were always negative on their labwork for this.

Talked to Dr. B today- I am so greatful that he's our doc! He suggested some meds that the docs at ER did not prescribe. Also, bloodwork for mycoplasma pneumonae done based on his suggestion. (I work in long term care/rehab & have had many pts. recently that have had pneumonia dx & 2 currently w/ airborne MRSA) Dr. B was very clear that Augmentin would not clear the mycoplasma if it was positive and I would have to take the girls for testing if I was. He did up the girls Augementin ES 600 to BID from their recently reduced does of once daily. My GP gave me an rx for Zith. & told me to start it along with the Augementin. Hopefully I'll get well quickly from all the ABX, steroids & albuterol I'm on now. My 6 y/o had increased tics, piano playing movements of her fingers, vocal tics & emotional lability last night & this am-she's so quick to respond to the presence of strep. Hopefully adding the 2nd dose of ABX will get rid of these again.

If your working with A PANDAS knowledgeable immunologist, they should be able to fax you the orders to have the labwork drawn prior to your visit. Seems like it's almost necessary to have it. Our first appt with Dr. B was to review hx & go over bloodwork results. Our initial labwork from Dr. B included tests for mycoplasma pneumonae & Lyme as well as numerous other tests. B/c many of those test have to be sent to specialized labs, results on some took 10-14 days. Best Wishes, Amy

I was watching the videos under the post Dr. MDK page. Dr. Susan Schulman, a pediatrician treating PANDAS, in the segment called Possible Treatments stated that... “The mildest form of PANDAS actually is irritability. The symptoms of PANDAS range from easily crying, very angry, not happy, not satisfied, irritable, fighting with his siblings, not satisfied with anything the parents give, restlessness...that is the mildest, most common symptom.” She goes on to talk about milder symtoms & I would say many of those fall under the umbrella of "drama queen" like my youngest. She also says in another clip...“...by the way, it does come up in siblings, it's not rare at all to see it in siblings.” Makes the reality of my second child's dx. sink in even more.

Dr. B ordered lab work for myself & my husband. ASO & anti-D-nase B Titers.

I have to reply to this as well. Having received all my daughter's medical records from our former pediatrician (she brushed me off when I mentioned PANDAS while my daughter was in the midst of a 7 month battle with recurrent strep and began to have tics & emotional lability) I found that she did not document very well on our sick visits. I kept calendars for the first 2 years of my daughter life and wrote every illness down, especially strep at 7 weeks, 3 months, etc. That pediatrician would test her every appt for strep no matter what b/c ahe had strep more than 10 times in her first 2 years of life. Do you think she documented all those positive strep cultures-NO! Of course it wouldn't have mattered if my daughter did not develop PANDAS at the age of 4. It is inexcuseable-I needed those records to document the abnormally large number and young ages at which my daughter had strep. Good thing I kept my own calendars-I brought those with me to our initial appts. with Dr. L & Dr. B. My friend called me yesterday c/o the same thing with the same pediatrician. She took her son out of town to an ENT for PE tube evaluation & when the ENT was reviewing the medical records,he found about half of the infections he had been diagnosed with by her. It's really sad after all the money they charge for a sick call!

Early on prior to or just about the time of Dx of PANDAS my daughter (then 4) c/o leg pains. SHe could never specifically say or point to where. At that time she was in the midst of 7 months of recurrent strep. She has not c/o leg pains since that time. Interestingly enough, my sister at about the age of 7-8 or so had mysterious leg pains, so much that she often had to be carried. She saw all sorts of specialists, they ruled out rheumatic or Juvenile arthritis. She was a sick kid with lots of sore throats as a kid. Now at the age of 26, she has some mile vocal tics & a bit of OCD. Dr. B thinks there is some correlation. Now she was recommended to have testing for RA (rheumatoid Arthritis) due to something her optometrist noticed at her last visit.

We have the same situation here. My youngest is 3 1/2. I had been questioning in my head if her "dramatic" behaviors were being the "baby"of the family, growing up in a house with my PANDAS daughter and just modeling those behaviors, or did she truly have a milder form of PANDAS. (my 6 y/o daughter was 3 yrs, 10 mos when her PANDAS started to become obvious) so as my little one began to get closer I started to wonder more and more. My 3.5 y/o had been in PT for gross motor delays (mild) and then referred to OT for sensory integration concerns. Her sensory things often waxed and waned so week to week I'd go in and report an inconsistencies in the behaviors. It just didn't match with my experience with SI kids (I worked as an SLP on a multidisciplinary team of OT/PT/SLP for 6 years with preschoolers). Anyhow, she got a skin infection that was treated as Impetigo, but when it did not respond to a topical treatment specific to that kind of bacteria, they cultured it and found it was strep, so she was treated with an oral ABX. A few weeks later she was having periods of seperation anxiety at home, if she found herself in a room alone. She was waking at night having rages that were uncontrollable. And lastly, her sensory system seemed to be heightened again. I still did not want to believe it could be PANDAS, until ouor second visit with DR. B. He asked about her and I told him I wondered if she was "on the fence"-very mild PANDAS...(mostly b/c I still wanted to believe it was just her temperment, young age, birth order etc, etc) HE did the full bloodwork panel on her. She had immune complexes that were elevated(C3 was 38 (norm <8). TIters were not increased, but my 6 y/o do not rise at all either despite many, many positive strep cultures. So we treated her with ABX to see what would happen and their have been no nighttime rages & NO separation anxiety..in fact she prefers to play alone in a room and will tell us to get out. Sensory is fine now (she is an intense thumb sucker, but so was I). I have finally gotten to the point where I can say both of my girls have PANDAS. It was really hard to admit for a long time, but the changes in behaviors from ABX have proved it to me. Dr. B has suggested Cunningham tests for both girls, so that wil be our next pursuit. I would urge you to have her looked at. Many parents are finding that siblings have PANDAS to some degree as well, maybe just not to the same degree. I also wonder if it's just that we are catching it at an earlier age in siblings, being more vigilant b/c we know all too well what to look for. Best wishes, Amy

Awaiting a phone call from Dr B. I was concerned about the dosage on the Augmentin (875mg BID)-my five year old was taking (600 mg BID)...it didn't seem like enough. I will ask him about the effectiveness of Augmentin for Pneumonia. I don't know if I'll have faith in any of our local docs for anything ever again if he says it's not the right choice/dosage. Thanks to all for your replies.

I started with a slight sore throat last week & was planning on getting tested for strep, but by the next am the sore throat was gone. Fast forward 3 days and I have full-blown pneumonia as dx. by the ER today. I asked the doc to do a strep test and he was suprised to find it was positive. Both my girls (6 & 3) are on Augmentin ES daily (600mg). They were recently cut back to a half dose by Dr. B. Should I test them for strep? Or is it likely that they are protected b/c they were on ABX. What would you do?

I have a friend whose child was seen by an ENT who mentioned her son may have PANDAS. Her pediatrican is willing to order whatever necessary, but doesn't know all the components necessary to test. My daughter's file where I have this info is at my office & I am unable to access it b/c I'm sick with pneumonia (& strep test I requested was positive). Anyhow, I'm wondering if any of you have a list of all labs recommended-ie. titers, lyme, Igg, Iga etc. Thanks so much, Amy

For my 6 y/o daughter, it took a switch to Augmentin ES for the tics to reduce (we tried Azith. with her for 5 weeks. She is getting terrible teeth staining from the Augmentin, so Dr. B suggested trying Azith again to see if now that the tics are nearly gone, if it may work for her now. I'm afraid and instead for now we halfed the dose of her Augmentin (she's now taking 600mg/day).

Both my girls (ages 3 & 6) are on Augmentin ES & both are experiencing teeth discoloration that brushing does not remove. My older daughter has been on the ABX for over two months (with a month of azith & 10 days of clindamycin prior). I have only noticed the discoloration with the Augmentin & now my younger daughter has the same. We see Br B again tomorrow and this is a huge concern for me. The augmentin is working but I'm thinking of going with another ABX if this is not a side effect. I did read that this discoloration is a rare side effect of the augmentin (odd that it's happening to both my children). Just wondering who, if anyone, else has had this problem. Thanks, Amy

Dealing with the same in my 3 1/2 year old daughter (my 6 year old was dx 18 months ago). My youngest has elevated C3-immune complexes when lab work was checked on her (neither of my children has increased titers, despite many diagnosed episodes of strep in my oldest) Anyhow, I question everyday if she has PANDAS (Dr B thinks it's early signs).. She has been treated for sensory problems, motor problems, has extreme separation anxiety at times, goes into rages frequently. I continue to question if this is being 3, being the youngest, or growing up with and modeling the behaviors of a PANDAS sibling. We see Dr B on Monday & I plan to discuss all this (actually though she is doing better after the last month of ABX) Amy

On vaccines... a year ago Dr. L told us not to vaccinate our daughter with any "live" vaccines-we chose to do none of the kindergarten vaccines at that time and due to her current relapse, we will not be doing any of these this year either. I don't know if anyone mentioned this to you, but you can have your child's titers checked on the vaccines to see if s/he even needs the booster (if the titers are high enough, s/he doesn't & school must accept these results). Dr. B told us to absolutely do this first and if the numbers were low, he would write the note (like our pediatrician did last year) that due to medical reasons, vaccinations would be deffered at this time. We had no problem with that note in NY. My daughter will be having her titers checked next week, in anticipation of the school year beginning in three weeks.

Chris, I go to the pharmacy the day I run out, since it's only good for 10 days. Now, this time around, with only 7 days between bottle, my daughter is doing well, quite consistent (I'm going on my Mom's report, as she's staying with them for the week). My parents have a lot to compare it to though b/c they saw firsthand last week what its like day 7-10 & then 1-2 more days until the new bottle "kicked in" I plan to get all future rx's in smaller parts, so we go no longer than 7 days at a time once it's reconstituted. I'd love to hear how it goes for your child. Amy

We were in Cape Cod this past week and had to refill the rx's there-anyhow I talked with that pharmacist about my concerns and she broke up the prescription into 4 bottles, so about 7-8 days each to see if it makes a difference. Finally, a pharmacist that didn't think I was crazy (well maybe she did-I went crazy b/c at 9pm I arrived at the pharmacy to be told that insurance would not pay for two more days-well my girls were out of meds, I was on vacation & already had a ramping up in symptoms due to being at the end of the "shelf life") After they saw that I refused to leave without ABX and many, many calls to my insurance co & the CVS here at home, they corrected the mistake in their computer! (again, they must have thought I was crazy, they acted as though I was trying to refill a narcotic 2 days early) What we PANDAS parents won't do for ABX!

My daughter takes augmentin ES liquid form 600 mg/twice daily. When it is reconstituted, it is said to have a shelf life of 10 days. I have noticed the same cyclic pattern in my daughter for months now, that her PANDAS symptoms return or increase at about day 7 of that bottle of meds & then subside again when I start a newly mixed bottle (usually 2-3 doses into it). Anyone else noticed this? The pharmacist told me that the manufacturer guarantees that at 10 days the medication is as effective as day 1, but really who could test that other than them. I'd love to hear from anyone that has had this problem with any liquid form ABX. Thanks, Amy

We owe it all to the parents on this forum!---my daughter has a diagnosis and has received treatment from 2 excellent PANDAS docs. due to info and recommendations I have gotten from here. My pediatrician will even ask me what the "moms" on the forum think (he doesn't realize some Dads are just as involved on here)-he knows I always ask here first. We will always be eternally greatful to the wonderful and knowledgeable parents on this forum, who have and continue to help guide our way through the PANDAS maze.

My daughter, almost 6, 50 lbs is taking Augmentin ES 1200 mg/day (600 BID) for nearly 7 weeks now per Dr Bouboulis' recommendation. Prior she had been on Azith for about a month or so with only mild improvment in symptoms. 2 weeks ago when we saw him, he wanted her to stay on it for a few more weeks and see her back (at that time she was 95% better). Well, I tried myself to cut back the dose to 600 mg for a few days to see how things would be- BIG MISTAKE! Even our 14 year old babysitter asked last night to tell her why Allison's hand moves so much...ugh! So I will up her to the regular dose (we are about to go on vacation so I need her the best possbible). Dr. B wanted to see if he could get her 100% better and then hopefully reduce the dose next month somewhat...but then said he'd reassess the ABX in a year. We see him back again in August following our vacation. Last year I did not keep my daughter on a prophylaxis dose of ABX-I will never do that again b/c her symptoms returned much worse 10 months later. Amy

My husband is a dietitian & he often recommends Carnation Instant breakfast as it's comparable to Ensure but costs less. My kids started drinking this in the morning when they don't want to eat-they like the strawberry and vanilla flavor. You can also call a dietitian & they can calculate the calorie needs for your child so you can see what his actual needs. He/she may also be able to give you some other tips for adding to what he will eat without changing the taste. Good luck, Amy