beeskneesmommy

We did 1 IVig with our son and he started really showing positive effects starting at about the 8 week mark, which is when it really should have been out of his system as the half life is about 21-28 days. That was last September, and he continues to improve. It all depends upon the kiddo and the PANDAS, infection, etc. Try to hang in there and give it some more time...

M Pneumoniae IGG ABS - 962 M Pneumoniae IGM ABS - <770 ?????

The diagnostic criteria for PANDAS has been stated by the NIMH. However, I find that most speciaists utilize their experience and skills to diagnose clinically. The onset is considered to occur between age 3 and puberty. However, since it is believed to be genetically predisposed, signs and symptoms are often identified by parents in retrospect at earlier ages. My son was sick often with fevers, the first at age 14 WEEKS. The onset of behavioral symptoms were at about 18 months. It's important to keep in mind that this illness is still in its pioneering stages and that there is much inconsistency within the medical community with regard to PANDAS. The best thing that you can do for your child is to take her to a known PANDAS specialist, have bloodwork done and discuss diagnosis. http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questions-about-pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcal-infections.shtml

Does this come in a liquid or chewable?

We started w/Augmentin which helped but only so far. Then we put our son, then age 4, on Omnicef. This worked very well for about 4 months, then he started having increased flares. What made the huge difference was the combo of Augmentin and Azith, which he has been on for almost 2 years straight.

It is my understanding that it is just as effective as the 5% products, but may have less side effects as it causes less dehydration. That being said, Gamunex is still the only product approved for neuro disorders and the only one that I will let into my child at this point. I like their presentation of filtration processes. Perhaps a little OCD on my part, lol! It is my understanding that many hospitals are now in process of switching to 10% products like Octogam. Below is a side by side chart that gives some information. http://www.phscorporation.com/IVIGComparison.pdf

We were given Diflucan because it is more benign than Nyastatin. It is my understanding that Nyastatin can cause liver damage and the herxing can be worse. Maybe you should look into alterbating until you get the Candida under control? I am going to ask about this tomorrow when I speak to Dr. Bouboulis.

How annoying. I do not know if this is true, never heard of it. However, a rapid swab should always be followed by a longer culture. I cannot imagine why he would not do both, as the longer culture will provide more. I have had my kiddo come up neg. on the rapid and then pos. on the culture.

DS6 has been on abx daily since Sept., 2010. He has been on Augmentin and Azith daily since July 2011. The Azith was a game changer and responsible, in part, for his recovery. Watch your kiddo carefully. I would be concerned about not having any abx protection at this time of year. Maybe summer wouold be less germy?

Has anyone been to see Dr. Elia recently, since she started at Dupont? If so, I would like to hear feedback. Thx.

Some see the importance of longer term abx for our children. And I second EAMom re: the probiotics. Mine is quite elevated for Candida, likely d/t long term abx. Sounds to me like more testing would be a good start.

Interesting. Thx. I thought Enhansa could be ordered online? Does it require a script?

Is it because she has some kind of "occult" strep infection that hasn't yet cleared and that the Azith is still combating? Or is it because the Azith is acting as an anti-inflammatory? And how can I figure out which one it is? Would the quick turnaround back on treatment-dose Azith be indicative of one or the other? I will follow up with Dr. T but would love your input too. Probably a little of both. Has your kiddo been tested for Mycoplasma and tick borne infections? My son was given Z-pack 2.5 years ago after a T&A left him with an acute PANDAS episode and walking pneumonia (he already had PANDAS prior to the T&A which was the reason why we did the surgery, but blew sky high as a result of Strep colonization after the surgery, then got pneumonia). Anyway, we noticed that the PANDAS improved dramatically when on Azith, but then returned. We played this game for a while, then went to Dr. B who explained that starting/stopping abx over and over can cause a disconnection between the immune system and the antibodies, causing an increase in the autoimmune process. My son was put on a combo of Augmentin and Azith for a long time to combat testing that showed Myco (walking pneumonia but can also be tick borne), and low level Lyme. Azith is the appropriate med for these infections in little kids and Augmentin combats the Strep. Both are anti inflammatories. The improvement was amazing and far more effective than Augmentin or Cefdinir alone.

Interesting and exciting information today! As I have mentioned before, DS6 seems to look stellar when on Diflucan. Just got the lab results back. Despite 2 runs of 35 days since December, along with actually being on Diflucan currently,DS6 is showing significant elevation in Candida. I suspect this as secondary, caused by years of abx use to knock out Strep/Myco. However, we know that overgrowth of yeast/Candida also causes PANDAS symptomology. For those that are stumped at this point, or who have seen significant improvement when using enzymes/probiotics, I suggest testing for Candida. I am thinking that DS6 would have had an even higher count before Dec., prior to using Diflucan. This is the 1st time I have ever had him tested. Hopefully, the Diflucan is doing its job! I will continue on with the second run of Diflucan (back to back with the first which will be 1 ml/day for 70 days total) and see where we get. Dr. Bouboulis may get more agggressive once he reviews the results and I will share what arises. Warm, positive thoughts to all of you and your babes.

The search engine would not produce for me on this one. Anyone out there had their dog tested for being a Strep carrier? I understand that it is very rare, but wanted to make sure we left no stone unturned. If so, can you tell me what test it was? Honestly, I asked my vet and the he is trying to help, but he is now emailing me about the liklihood of actual PANDAS in my child after talking with the CDC. Yes, the animal doc. the vet. I am so tired of this kind of battle when I am only trying to get what I thought was a simple swab or blood test for the dog! We have been at this long enough to know that our son has PANDAS! Sheesh!

Yes and yes! DS6 was flaring when his teeth came in (all 4 fronts...sadly, they came behind the babies and he is still waiting for the babies to fall out)! I asked in several forums, as my son is very well these days and the flares were frequent and unusual. i was told many times over that teeth coming in often and typically causes flares.

We have not but there are multiple parents in a forum called PANDAS PARENTS that have and I have heard all good things about him..

LLM. thanks - I have been told by several dics that the single mutation is a non-issue. I have read that you have to be very careful with the product that you use - what methylB12 do you use and what dosage? How did you arrive at that dose?

My son was straight forward PANDAS for acouple of years, but tested for borderline Lyme and Bartonella in July, 2011. This is also when we started the combo of Azith and Augmentin (after almost a year of Augmentin or Cefdinir alone, at diff. times). We see a multidisciplinary team of PANDAS docs. Here is what I have been told, and what I have observed to be true. Azith/Augmentin combo was prescribed by Dr. Bouboulis. Azith was to address any Lyme/Bart in there, and Augmentin for the Strep. DS did well, but herxed on and off for the 1st 2-3 weeks. Dr. latimer recently told me that herx is more likely to be seen with Lyme than with strep. After the initial 2 weeks, he began the long road to recovery. That abx combo has taken him very, very far. Dr. Bouboulis told me that starting/stopping abx can actually cause a disassociation betw. the immune system and antibodies, causing worsening of the autoimmune process. We have stayed steady on the abx combo. long term, which has made a huge difference. Long term abx, in my opionion, are needed to knock out the infection(s), before IVig can be as effective.

It is my understanding in talking with the Ped. who had my son tested, Dr. Latimer and Dr. Bouboulis, that the single mutation does not need to be addressed. If there is a double mutation, then it should. My son has the single.

For us, it has been the combo of Augmentin and Azith, although my son is younger - began the combo at age 4.5 to the present, age 6. I believe, if memory serves me, that Azith is the best choice for Lyme/Myco for littler kids...

I second this - Everything that you discuss goes on record...and, as much as we would like to believe that our private insurance companies are on our side for excellent care, they are also in the business of weeding out "unnecessary" treatment. My son was denied first as "treatment is experimental and not covered", then under a diff. dx from a diff. doc (SC) as "unnecessary treatment. I was too worn out and time was way too short to go thru the appeals process, as he needed the treatment sooner, rather than later. Best out of pocket money we ever spent, but would have been nice if insurance had paid for it! Although we knew not to call the insurance company, we did speak to my husband's human resource dept. under the advice of a nurse, who said they might be able to "pave the way". I am pretty sure this is where we went wrong, as I think the human resource lady used the word PANDAS" with the insuarnce company. Expensive bummer.

I always recommend that you see a PANDAS/PANS specialist, if possible. Kudos to the doc who is checking into this, however! Where are you located? There are several specialists to choose from, but they are abooked solid, so getting and appt. ASAP is necessary as the wait can be several months.

Since she has had a recent increase in tics, how about starting with Strep/Myco titres? This may be something that her ped. understands a little easier?

I am sorry - where are you located? Has he been tested for tick borne infection as well as Stre/Mycoplasma? This is not just Lyme, but several others as well...