beeskneesmommy

Hi - I am from the PANDAS board but I have someone asking for treatment help for their son. he has Lyme. He has anorexia as a primary symptom at this point. He is hospitalized at MacLean in Mass, but not doing well. The family is looking for inpatient treatment, but I would welcome all referrals, inpt. and outpatient. They are looking for holistic treatment, but again, I need all referrals, traditional and holistic. This kiddo is in serious trouble, please kelp! Thanks, Kath

I cannot speak to that. I do not know any history. We have been thru so many flares over the years that i learned to wait them out. Sounds like perhaps your kiddo was recently diagnosed with PANDAS? Do you have a specialist that you can speak with or are you relying upon a pediatrician?

Ibuprofen and yes, I would try to get abx. Did he have a Strep test? My son's Strep after time morphed into low grade fever and common cold symptoms. Chances are it's not just a cold. Hope things get better quickly. -Kath

Another phone topic. It is likely DS6 had RF - generally diagnosed after the fact from clues in retrospect (loads of Strep infections, rash, Scarlet Fever). RF can lead to either of 2 pathologies - the heart and joint affectation or Sydenham's Chorea which is on the same spectrum as PANDAS. DS6 had PANDAS dx for years, confirmed by multiple docs. Most recently he was also given the SC dx as well. Same treatment - abx and IVig.

Dr. starts with 1.5 g/1 kg per weight. He uses Gammaguard. Start pushing liquids several days prior, during and after. I am pretty sure his protocol is to push an IV fluid bag prior to the IVig product and includes steroids. He also doses oral Benedryl and Ibuprofen or Tylenol. He is our doc but so is Latimer. We did IVig with her about 6 weeks ago. The diff. is that she doses Zofran (antinausea) IV with the fluid bag and then has you give it orally round the clock throughout and afterward. She also alternates Ibuprof. and Tylenaol every 4 hours orally round the clock during and several days after. I believe that this additional med protocol made it easier for my 6 yr. old son. lastly, her IVig product is Gamunex and she doses 2 g/1 kg.

The answer is Yes. My son began his bouts w/Strep at a very early age. The tonsillectomy actually caused a severe acute episode because they were removed while he was Strep infected. Long term abx brought him back, although not perfectly, as this had been going on for a long time. He just had IVig and is doing very well. I have not seen the oppositional/defiant bx for quite some time. Long term, therapeutic abx dosage is very important, in my view. You must get in with a specialist!

We were denied w/Bouboulis for Neuropsych d/o and then with Latimer for SD. The first was d/t "experimental treatment" and the 2nd was d/t "not medically necessary". Hah! We paid OOP w/Latimer and we are waiting for her to do a peer review. Cigna will not allow us to begin appeals process until the peer review is completed. I am starting to wonder if that is ever going to happen. We may just be out the cash.

Have blood drawn for Mycoplasma in a couple of weeks. It's opportunistic to Pneumonia. My son got it soon after he had a T&A and got walking pneumonia. Z-pack is the choice of treatemnt but we used long term Azith to knock it out. It's a beast for PANDAS kids, but you can hopefully kill it if your kiddo is infected. We did. Hope your kiddo feels better and sorry to hear this! The labs will tell you and let's hope Myco didn't jump in there!

My cousin lives ion that area and they are still without power. Horrible luck! I didn't even try to call him when I wanted Augmentin last Thurs. I just went to the urgent care and got it. I hope this doesn't cause a huge IVig back-up for people!

I don't know anything about adverse responses to tamiflu, but my son gets some adverse responses to quite a few meds. If it were me, I would go with my gut. Hope things get better soon!

Do you mean that you had a blood draw for Strep titres? I find more of an upset stomach w/my son after prolonged abx use. I have not observed PANDAS causing it...I hope this is a short journey for your son. Best to you!

In rare cases, steroids are known to cause psychosis, especially in small children. When my DS had just turned 4, he had an acute episode that sent us running to CHOP in Philly. Dr. Elia was very hesitant to put him on a steroid burst for this reason. We did do 2 tapers at age 5 that were very successful, but I was very cautious for the 1st one.

If you think that your child has PANDAS, and the docs won't even take a look at the notion, I suggest that you see a specialist ASAP. What part of the country are you in? Most of us find it necessary to travel. I am attaching a link with referrals. We can vouch for, or know several people that vouch for Dr. Bouboulis, CT; Dr. Latimer, MD; Dr. Elia, DE (not currently in practice but will be soon); Dr. Triffiletti, NJ; Dr. Kovocevic ILL. The 2nd link I am attaching is from Dr. Kovocevic's Site - regarding PANDAS. http://pandasnetwork.org/resources-new-research/treating-physicians/ http://webpediatrics.com/pandas.html Warm wishes and hang in there!

Tru calling the behavioral Health Dept. at Dupont in DE. Dr. Josephine Elia, one of the foremost specialists in treating PANDAS and using PEX, will be going to work there at the turn of the year.

I would definitely call Dr. T and ask him prior to administering steroids...

Weird. I just spoke w/someone over at Dr. Latimer's office who said that they were not opening any time soon...do they have a target date?

I thought of testing our dog when DS had the acute onset post T&A. There are several docs that have told me about this, but they have also said it is rare. My son has gotten SO much better over time, so if the dog was an influence, I guess he isn't now. I also understood that cats are not a carrier issue...this is not correct? Good to hear that you have found the culprit! I have often thought of testing the dog just for the heck of it - I know that when I go on Augmentin for 30 days my son looks stellar, so I am aware that he and I pass Strep back and fourth as my titres elevate when he has a flare...

Your statement "Always flares up with infections" is suspect. PANDAS symptoms wax and wane. This could be nothing...or not. Many PANDAS kids start with symptoms only associated with infections...then morph into symptoms when there is no evident infection. Mine was a classic "cause-effect" kiddo when he was younger, then had an acute episode after a T&A while Strep infected. the Strep went systemic and it took the better part of a year to start getting things under control. What has made a huge difference for us has been long term abx...as for if it is or isn't a tic, you seem to be concerned about it. Do you have a PANDAS specialist on board??

If this is a sudden onset associated with being ill and there were no behavioral concerns previously, as you seem to indicate, get to a specialist right away. Other infections can cause the PANDAS response. One of these is Mycoplasma d/t walking pneumonia or other respiratory infections. There is a plethora of infections that can be the culprit, including Lyme, but I wouldn't necessarily go there right away with the pediatrician or psychiatrist, unless they are cooperative and willing to look at PANDAS as a possibility. This is why a specialist is necessary in order to order all of the appropriate tests. EVEN IF the Strep titres are normal, PANDAS is not ruled out. How old is she? OCD looks a little different in little kids. "Persistence" can also be the getting "stuck" part of OCD. My son began this way. What part of the country are you in?

Elevated titres do not necessarily mean you can rule out PANDAS. It is much more complex than cause/effect from active Strep. especially after time. Get him to a specialist who will test for other infections as well!

I would consider it unusual behavior, although if it is the only behavior and not interfering with other areas of life, wouldn't worry too much. At this age they are hard to figure out because little guys do some strange things sometimes, PANDAS or no PANDAS! I would certainly monitor him carefully. Even a small sinus infection can cause a flare. Sinus infections are, in many cases, the worst culprit for hiding Strep/bacteria! My DS just turned 6 also has increased tics after playing video games. I have always been pretty picky about them and there are some that are worse than others for tic increase. Just a thought - I have been letting my kiddo go onto the computer for Disney's "Club Penguin". It is mild, makes him problem-solve but doesn't have the wild, fast paced stuff that many games are made of. It gives him a little connection and makes him feel like he is getting something special (we use it for incentives) without doing any harm

Hi - I am from the PANDAS forum but I have been asked by someone for a doc referral for a kiddo who had PANS onset overnight and was dx with Lyme. He is in the Boston area. Any help would be appreciated. Thanks!

Hi - I am from the PANDAS forum but I have been asked by someone for a doc referral for a kiddo who had PANS onset overnight and was dx with Lyme. He is in the Boston area. Any help would be appreciated. Thanks!

Some are and some aren't. We see a pediatric neurologist, a neuropsychiatrist and an immunologist, all well known PANDAS specialists. We go for the multidisciplinary team approach. The best you can do for your child is to get him/her to a known PANDAS specialist. Make an appt. now, as the wait list can be 2-3 months+ to get int for an eval. In the mean time, antibiotics would be the first line of attack for most situations, if you are in accord with western medicine rather than going purely toward the holistic route. What state are you in?