beeskneesmommy

Hi - can you post a link to info re: OLE? For some reason my search engine will not hit it. Thx and yay for your success!

Have not had it but we see Dr. Josephine Elia, formorly of CHOP (among other specialists) and she is the go-to gal for Plasmapheresis. That being said, she is relatively conservative, depending upon the age and onset of your kiddo. She will be practicing at Dupont in DE soon.

Sorry. Great dad! We went thru 10, yes 10 pediatricians before getting any help 3.5 years ago. Most of the agreed that DS had PANDAS, but they just seemed to think that giving 10 days of abx for the Strep+ tests would "make it go away". Of course, it got much worse...and now much better. Have you tried seeing any known PANDAS specialists? We are in NC but travel to Bethesda for Latimer, Philly for Elia and CT for Boubopulis. We also know a doc in SC, who is currently getting set up in a new practice and will be taking on PANDAS kiddos. If you want more detail, please feel free to PM me.

Good for you. I cannot imagine a more difficult place for a kiddo with separation anxiety and other PANDAS issues. It is cold and demonstartes how clueless the doc is. makes me very, very sad and angry too. Hang in there - you are a good mom!

My son, age 6, has been on Augemnti 2 x D and Azith 1 a D since July of 2011. It has been instrumental in changing our lives. He is in very good shape at this point and belive me, he was very, very sick prior to this abx combo. Yes, it can be dangerous to the liver and kidneys as well as other funtions. However, we draw blood every 3 months to test for toxicity (chem screen) and he comes up OK every time. You should be extremely diligent and careful about it, and remain under a vigilant specialist's care while on the abx. I would do it again in a heartbeat. the recovery for my son has been amazing.

Listen to me, all parents! I have been reading several messages of despair during the holidays on various forums. The shooting last Friday shook us all up and added to the worries of the world. I am here to say that your child can and will get better! My son had his 1st Strep at 14 WEEKS. He has lived with PANDAS/PITAND for well over half his life and fell to pieces in September 2010. He literally went non-verbal, rocking, stimming, with chorea of the upper body, severe facial contortionas verbal tics and OCD. He was lost. It took time and good docs, and treatment, but he is found. He is here, whole, happy, healthy, relatively cheeky and obnoxious and sweet as any 6 year old boy can be! 3 years ago there was very little info out there. Now the medical community is starting to catch up and the specialists are gaining ground. Most of all, we parents are pushing forward, striving and CHANGING the way that the country and the medical community looks at this, and related health issues. This is a disorder from which your children can recover! We will have to be vigilant throughout our son's childhood and adloescence, and perhaps tweak things with IVig occasionally or abx changes, but he is going to be OK. Please do not lose hope and keep fighting the good fight! It will pay off. Happy holidays and love and peace and caring from my family to yours. -Kath

Thanks for posting this. I was really disgusted with the way some of the press handled the news during the first day or 2. They released bits and pices of sometimes somewhat irrevelant info (like the DX of Aspberger's) and pushed out lots of speculation. Rudy said it well when he was asked all sorts of questions from a reporter: 'What we do know is that we do not know a lot right now and anything we state is simply speculation, so let's wait until the investigators do their jobs and are able to give us real information...' not a direct quote but close. I do not have a kid with "ASD", just PANDAS. However, I was greatly disturbed by the inference that the general public might misinterpret...that somehow having ASD/Aspberger's could cause this level of instability and violence. -Kath

Phone consults are 500/hour, which is the general standars rate for most specialists. i have 15 minute consults every 4 weeks and pay 125.00.

We did not cont. benedryl, but we did continue Zofran (antinausea), and alternating Tylenol/Ibuprofen round the clock for 3 days post IVig. It helped a lot w/Side effects. Dr. Latimer told us we could cont. Benedryl if needed for sleep, regular dose. The Zofran made him groggy enough.

Just spoke w/Dr. Elia last week. She is hoping to get started at Dupont in DE by the end of this month or in Jan. Moving across state lines has held things up w/red tape due to the licensing process. Keep calling Dupont every week or so. She is trying to get there as fast as she can. I don't know that you will find help at CHOP now that she is gone. Dr. Triffiletti is in NJ and will do phone consults. Dr. Bouboulis is in CT, 2.5 hours away from Philly. Dr. Latimer is in MD, 2.5 hours from Philly right of the WA beltline. We see both of these docs along w/ Dr. Elia. Tell your frineds to make the appt.s now, as the wait could be a couple of months. They can always cancel. Tell your frinds that it is worth the trip, only a day drive, and that PANDAS can get much worse if untreated.

Thanks. I am amazed that I have seen docs for this embarrassing "rash" several times. Although they agree that it is not yeast after a culture, they go no further to diagnose, both docs calling it "dermatitis" (fancy for rash) or "heat rash", and telling me to wear loose clothing. What an amazingly apathetic medical community we have here in the Raleigh area - which is supposed to be one of the country's meccas for medecine. Hah! I have learned so much more from other parents and specialists out of state throughout the years of our PANDAS journey! I am at the point now in which some docs in this area are coming to me for info! I will add this one on to the list as a possibility - I think that Strep rashes may be rare, but not THAT rare!

I think every kid responds differently. Mine slept prett well afterward. We had IVig w/Latimer in mid-September. I recall that she had us administer Zofran, Tylenol,Advil round the clock for several days afterward as a preventative measure. The Zofran, especially. We stopped it 3 days post the end of the IVig. No vomiting, 1 day (the after the IVig was over) some bad headaches, but no other severe side effects. She said that the side effects could persist for up to a week afterward. I would continue the Zofran round the clock for another day or 2 since she vomited.

I spoke w/Dr. Elia yesterday. The licensure process for DE is dragging and she hopes to be up and running at Nemours within weeks, hopfully no later than Jan. Re: worries about abx tolerance: have you drwn blood and done a CBC and chem screen to see if there is any liver/kidney concerns? PEX basically cleans the blood whereas IVig adds in new antibodies. It is important to clear infection as much as possible. Have you had her on an abx combo? Has she been tested for Strep titres recently and for co-infections? We see Elia, Latimer and Bouboulis. I would recommend trying to get in w/Bouboulis for help with clearing infection. I would also keep Elia and Latimer on board. If my memory serves me, you are from my neck of the woods on the Main Line outside of Philly? It serves us as an excellent jumping off place to see all our docs. Feel free to PM me any time. -Kath

Yes, I would be concerned and see a neurologist. I think waiting until May would be a mistake. That is a very long time. My son had hand tremors and body trembling at one point during the worst of his PANDAS. I would think it wise to pursue any "new" symptomology, especiallly if you ahve knowledge that your son is on a lower dose for abx than is typical for treatment.

For several years I have been getting topical rashes. Incidentally it began when we moved to NC, almost 5 years ago. This is also when my son started getting Strep that at the time was unidentified. I noticed that he had a flare while I had another "heat rash" (this is what the docs call it as it is not a yeast rash - I assume because they have no idea what it is). Anyway, duh, it dawned on me that this is probably Strep. I have a long-standing relationship with Strep and my titres elevate in correlation with my son's. Anyway, I am really mad that I have been wandering like a fool for several years, not addressing this problem. Can anyone tell me what the ratio of H2o to bleach is appopriate for adult bathing, and how often should I take a bleach bath to try to keep thing incidious beast at bay? Any other precautions/remedies?

Yup, No, no, no! Indeed, my son had a strong flare after the regular "dead" injection a few years ago - that was before the H1N1 and the other Flu strains were combined. We have not done Flu shots for 4 years!

When we order it (and I am reading directly off of the Labcorp result), it is listed as Mycoplasma pneumoniae. It tests for bothe igg ("old) and igm ("new" or current). It has numeric range demonstrating "normal" to high. We test for it every 3 months and it always is presented this way. Yours does not sound very detailed or efficient.

Although DS6 did not become infected (with any outward symptoms), he flared significantly when exposed to outbreaks at this school and then around 2 sets of friends. It was clear that the was reactin to Coxackie when I looked acrefully at the timeline. Dr. T has spoken specifically about flares to Coxackie exposure.

We had a very negative experience with our DS6. His OCD increased hugely with inisoltol and I never even got him titrated beyond the firstlow level dosage. Hated it.

I am so sorry. I guess we all know that kind of heartbreak after things have gone so well. It is terrible. Can you do a steroid bust/taper, or are you afraid of increasing tics?

My 6 yr. old has been on abx for 3 yrs. strraight and a hefty protocol of both Augmentin and Azith since 7/2011. I guess it depends upon what your specialist says and how the kiddo is doing. This current protocol really helped a lot. He had IVig 9 wks. ago for the 1st time and we decided, despite that fact that he is doing very well, to keep the abx on board until spring in order to protect him. I, personally, would not make the decision to back off without my specialist working along side me, as I would want to titrate down slowly, each time watching for a week or 2 to see if any PANDAS symptoms start to return...

2 schools of thought on this: 1. Dr. B does every 8 weeks, usually for 2-3 tmes as the half life of IVig product (when it washes out of the body) is betw. 8-12 weeks. School of thought is to "replenish" the product in the body to continue turning the immune system around. 2. Dr. L does a slightly higher dose (2g/1.5kg) one time, then waits for at least 12 weeks, usually more. She reports that the pt. may continue to demonstrate improvement for up to 5-6 months post IVig treatment. DS6 have IVig w/Dr. L in mid-Sept. We chose to be more conservative and move more slowly. It also worked out financially and geographically to do it w/Dr. L. Our son has improved a great deal but is not at a constant 100%. We have decided to wait and watch, then plan to do another IVig some time in the late winter or early spring if he is still not 100%. Neither choice is right or wrong, although some specialists belive that it may be detrimental to do several IVigs close together in succession. I trust both docs judgement, just chose to be more conservative. This being said, our son prsented as a more mild case over the last year as the abx therapy that Dr. B has him on moved him forward well.

Megan, Dr. Josephine Elia, formerly of CHOP, will begin practice in December at Nemours, Dupont Children's in DE. She is a renowned PANDAS specialist and her expertise in treatment is PEX. However, that being said, she is known as a conservative doc. I suspect that she will have more freedom in her new practice to treat PANDAS kids, but only time will tell. I recommend a multidisciplary approach. We see her, Dr. Bouboulis and Dr. Latimer. I recommend all of these docs as they approach PANDAS from different angles. We have had great success with our son, age 6. It sounds like your kiddo(s) need to wipe out the infection(s) in order to start fighting the PANDAS. Prior to a T&A, you should make sure that your son has a sterilizing run of abx - big gun abx! My son was Strep infected at the time of his T & A and had an acute episode, likely because he went in without the aforementioned abx protocol. Dr. T, and other specialists speak of the importance this as well. Feel free to PM me - I am originally from the Philly area - grew up in Wayne. Most of the docs I see are within a couple of hours from my childhood home, which I use as my jumping off place to get there. Good luck. KNOW THAT YOU ARE NOT ALONE. -Kath

Azithromycin should clear it unless you and/or your mother have immuno issues. Although this critter can be transferred by ticks, it is also an opportunistic beast that likes to jump in during bouts of pneumonia. We attracted it with walking pneumonia. Interestingly, my classic Strep:PANDAS kiddo got rid of it in the normal way, with a z-pack. His igg has always remained elevated for it, however.

Hi - We are from Santa Fe - lived in Denver for many years as well. We now live in NC but I al attaching a link to providers, several are in AZ and CO. Have you tried calling UNM Medical School? Good luck - at least you have Dr. T on board! -Kath http://www.savingsammy.net/providers.php