dcmom

Wilma- Go online to Baxter and order their play IVIG kit. Both of my kids loved it. It comes with a blue teddy bear, and real ivig/nurse supplies- they can play IVIG! My kids did it before, during and after- and still do over a year later!

This must be Dr V in Staten Island?

Dedee- I cannot see where you have anything to lose with pex. Both of my girls had it, and it was a miracle for them. It did not cure pandas, but put a COMPLETE end to the episode they were in, and we were able to resume a happy life. So far, fingers crossed, we have never seen days as dark as those prior to pex. We are relatively sure they do not have an issue with chronic infection, and that their issues are mostly autoimmune based. If mycoplasma is still positive, you may not maintain gains for too long after the procedure, but like LLM said, maybe long enough to get treatment for the myco really rolling. Also, if you can document improvement for pex, maybe you would have the option to do it agian after the myco is cleared. The other thing with myco, I don't know, but I am not sure if testing is definitive enough to be sure she has an active infection. Unfortunately, I would think pex would give you some clues as to what is truly going on with your daughter. There really is no negative effect of pex- it will either help tremendously and quickly, or it will not help. I wish you some peace. My kids have not gotten as severe as things sound for you, but we have been close, and I do understand how this can tear a family apart. The longer it goes on, the harder it is for the wounds to heal. I think if you can get pex, and get it covered, I would give it a try.

thanks Nancy- really interesting!

LLM - heard that too. I do the washer first, then hot dryer for about an hour. Will plan to spend more time at the pool, less time in the yard. Permethrin is good for shoes/ clothes- but it must be toxic- I try to avoid mixing chemicals/kids.

I have not seen the specific quote, but I believe the site is made up by parents, not doctors. I think it is wiser to discuss these concerns with several well qualified docs (not necessarily saying an llmd). There are just no easy answers, and if you do an Igenex, you will get five different interpretations from five different docs. In the end you will need to decide what direction to choose.

For the yard: Damminix tick tubes for the yard (you can order online). Also, you can spray perimeter areas with permethrin. Pants tucked in socks is suggested, looks really cool, too . Take playclothes off in garage, and throw right in washer. Hat is probably not a bad idea. Ticks like wooded areas, tall grass, stone walls, bush or flower beds- I do not allow my kids in these areas on a regular basis.

I am ALL for this mom testing for everything (this includes lyme)- I am sorry if this did not come across in my post. My concern is sending a mom of a pandas child off to llmd land- without getting input from other specialties. LLMD's (for the most part) are not the docs to treat pandas- you will be led down the wrong path there. I think it is important that chronic lyme does not overshadow pandas, on the pandas board. I think it is totally responsible and necessary to suggest that the parent should consider lyme testing, and to go over to the lyme board to find more information, but I think there is a lot of history on the forum that a newbie does not know. I know how overwhelming it is to be new, overwhelmed with your child's (in my case sudden) debilitating illness- you are not of clear mind to sort through all of this. If I started on this forum now, I would assume that science is finding out that pandas is actually chronic lyme- and this is not the case. Unfortunately- while lyme and pandas in some ways look alike, they are treated (by most docs) very differently. IMHO immunomodulating treatments (quickly) are key in pandas (pex, steroids), yet one is contraindicated (by the llmds) in lyme, and the other is major $$. This leaves and overwhelmed and undecided parent between a rock and a hard place. I REALLY wish this didn't have to be SO, SO hard, on top of how hard it is to see your child suffer.

Hi everyone, I am feeling the need to comment, as I think I see both sides of this "disagreement" (I am glad to see this stuff being talked about civilly this time), however I think that the forum, lately, only represents one viewpoint. Full disclosure: I have two daughters with pandas. I have tested them for lyme, and their results were similar to each other, and not concrete either way, IMHO. So we have seen an llmd, and done a lyme protocol with them for about two months- with absolutely NO change (no herxing, no improvement, no rashes, etc). So I want to carefully put my thoughts out there, and am interested in polite discussion. I would certainly recommend anyone suspecting pandas (or lyme) to do thorough testing for their child. I also would recommend them to see several doctors with different specialties with that child. Unfortunately, none of these tests are conclusive, and NO doctor has all of the answers. (period) I certainly believe in chronic lyme, have known about it loooonnng before I knew about pandas, before I even had kids. I do, also however, realize that there are many illness out there, many autoimmune disorders that have nothing to do with lyme (in fact strep is thought to be a culprit in several). PANDAS, as defined by Sue Swedo, is an infection triggered (strep to be precise- although now that might be opening up a bit) autoimmune disorder, with a remitting and relapsing course. There IS such a thing as pandas, which is the same mechanism as rheumatic heart disease and sydenham's chorea (which has been around for a loooonnnng time). So why am I saying this? Because while I DO think it is very important to suggest to every parent to test for all types of infection- to me the advice on the board these days implies that there is no such thing as PANDAS. That if your child relapses, or does not remit easily- it is because they have lyme. I just think we need to be WAY more careful than this- it must be SO confusing to newcomers (and I fear we may have lost lots of input from some very wise pandas parents along the way). A few thoughts: On a forum like this, we cannot possibly know everyone's stories. Of course it is VERY likely that there are a percentage of kids here who are NOT pandas, and some on the lyme board that are NOT lyme, but the parents are searching for answers and hope. Probably some of these kids did not fit the criteria. We became very loose here, poo pooing sudden onset and other things. While I am sure there ARE pandas cases where the sudden onset is missed, this is the hallmark of the illness, so maybe we shouldn't have been so quick to accept that all of these kids have pandas. The other issue being- pandas is thought to possibly remit without medical intervention over time, and kids can relapse much later. So- being on the fence about pandas/lyme- I feel I will be a bit skeptical of anyone touting an "answer" to pandas, until they have had longer term remission (at least over 3 years). So- my kids both had sudden onset at same time as positive throat culture. They were both low anxiety, low maintenance, robustly healthy, neurotypical kids until two years ago. NOTHING I could point to whatsoever prior to onset. Then they got strep and overnight things went wrong, and within a few weeks they were different kids with MAJOR issues. They have presented primarily with ocd (which causes them high anxiety, sensory issues, temper tantrums, anorexia, sleeping issues). It was a total nightmare. We were lucky to get treatment for them relatively quickly. They initially remitted with antibiotics, then steroids, and eventually we did pex with both. They had about a year remission after pex- fairly perfect for a year. Then they had an illness in December and we started this rollercoaster again. They are doing great again (although not perfect yet) thanks to iv steroids. For those who are seeing successful lyme treatment- can you share: Did your child fit the criteria of pandas to start, including positive strep culture and sudden onset of symptoms (tics, ocd, adhd, etc)? Did your child have accompanying physical symptoms? What was your child's health (physical and mental) since birth to pandas onset? How is your child doing now? How long did it take to get here? How long has remission been? I hope this does not sound offensive, or confrontational to anyone- it is certainly NOT my intention. We are all on a journey (unfortunately) to help our kids, and we all are smart enough to learn from each other. I just felt I needed to publicly agree with PANDAS 16, and hope it spurs on some more thoughtful conversation. My kids have been able to maintain a relatively joyous, normal life, thanks to PANDAS treatments : steroids and PEX. So- I want to be sure that other parents are not afraid to try these treatments if their child has pandas. I also wish we, as parents, could flush out some differences between pandas and lyme (symptoms, reaction to treatment, course and length of illness, etc). I feel a survey is needed- but don't necessarily think I can design one

Shaesmom- I don't really have anything to add, other than support. You are/were such a valuable forum member- I too had hoped you and your daughter were off living and healthy. I have found lyme to be more complicated, in our case, than pandas. I think it would be important to find a doctor who treats lyme, who you have some confidence in, at the start of you journey. We have looked into lyme, but my kids seem to fit much more neatly in the pandas box, in all ways. But- we really don't have physical symptoms, which it sounds like your daughter does. IMHO, after all our kids have been through, a couple months of an antibiotic cocktail to see if it helps, is not a bad idea. I hope you find some answers soon. Eileen

Oh- we did have BOOM ! everything gone with PEX (for both), but other than that, a slower in reverse order healing.

mommakath- what made Dr L suggest lyme testing?

Pandas 16- Yes. We see this type of pattern in both of my pandas girls. The older one, her first symptom is almost what we see as oppositional. To us, she becomes very moody and difficult, with lots of blow ups. When we talk about it, she tells me she feels overly sensitive. We see this first. Then comes the ocd, which snowballs, then anger and depression. ugh. It kinda disappears in reverse order when healing. Did you ever get this "over sensitive" feeling, to others around you? My other daughter seems to get something similar- however she reacts differently, lots of tears. Otherwise, she has a similar pattern, although she also has sensory issues (mostly to clothing), which comes prior to the ocd. I hope you are continuing to heal!

Luckily my kids can swallow pills- so the clinda was easy- but my ped said if they couldn't, take the capsule and open vs the liquid (horrible taste/smell). Both girls started swallowing pills with the probiotic pearls, which are tiny, and have worked up to larger things. I strongly recommend working on this- makes life a lot easier!

Both of my girls caught strep recently while on multiple antibiotics. One was on augmentin and zithromax, one was on zithromax and rifampin- all were daily treatment doses. We put them on clindamycin and it "seems" to have done the job...

Start dosing her with advil, every 6 hrs until you can get to the doc Monday.

I am so sorry Mia's Mom- I do know how you feel. I think fun has to be simplified a bit when the kids are in an episode. We have always liked to take lots of day trips to museums and events- when pandas hit, we really stopped that. Fun becomes things like: movie afternoon (cuddling on the sofa with popcorn and a movie), baking cupcakes together, painting (we did lots of painting- can be very therapeutic), short local nature walks to collect leaves, etc. crafts. My number one priority has become to help them find some joy in the day- at the worst, the best we could do would be tv or quiet play on the sofa with stuffed animals, as they improve, we stretch a little bit, until things are back to normal. You will be able to have these trips with your daughter again- but maybe now you could scale back to a short ride in the ring, or even just grooming the pony on a bad day. My little on loves horses also (wish we had some) and it was about the only thing she would do outside the home during her worst times.

My 2 pandas daughters have each had strep 3x. Once each prior to pandas onset, uneventful. Once each at initial pandas onset, two years ago. And last week. At the time, older daughter was on zith and rifampin. Younger daughter on zith and augmentin. All daily treatment doses. We have stopped everything and put them on clindamycin for ten days. The younger one had been on the clinda for 8 days, and so far she is doing great. No more illness symptoms, no pandas symptoms. (knock wood, fingers crossed). The older one has been on the clinda about 4 days, she is still very tired, and maybe the tiniest pandas increase so far. Both will be recultured in about a week, and/ or as symptoms require.

Tampicc- Just FYI- It is very common to have multiple kids with pandas. Both of my girls had strep around the same time two years ago (almost no symptoms of illness- just luck that we figured it out). The younger one (5 at the time) had a debilitating onset of pandas. At the time, her older sister, eight years old, NEVER an issue in her life that could be related to pandas, had a very mild onset of pandas. She (the eight year old) had a debilitating onset with H1N1 six months later.

For a quick explanation to a teacher or friend/family member, I say: They have an autoimmune disorder, triggered by strep and other illnesses, that can cause neuropsych symptoms such as ocd, anxiety, anorexia, cognitive issues, etc. If I delve further than that, I say: They have an autoimmune disorder called pandas, pediatric autoimmune neuropsychiatric disorder associated with streptococcus (this can be enough to glaze them over so no further discussion is needed). It is thought to happen in kids who have a genetic predisposition (maybe rheumatic heart disease or sydenham's chorea in family) and get (possibly certain strains of) strep throat. The strep triggers an autoimmune reaction. The child's antibodies mistake the basal ganglia portion of the brain for strep (through a process called molecular mimicry) and attack it causing inflammation. This inflammation is the cause of symptoms which include but are not limited to : tics, ocd, adhd, anorexia, anxiety, sleep disturbances, cognitive difficulties, urinary frequency. I will add. After the initial onset, unfortunately, this autoimmune process can be triggered by other things such as any illness, vaccines, allergies, anything that engages the immune system. I also add: the good news is, there is a lot of new information being studied, and there is treatment. I tell them that we treat pandas in two ways- first and foremost is medical intervention. We use prophylactic antibiotics to help prevent strep infections. We are very vigilant about their health. If needed we use immune dampening therapies: steroids and plasmapheresis. We also see a therapist to help give them tools to cope while waiting for medical intervention to work. If you have doubters- I do not leave any room for questioning. I shut it down. I talk VERY authoritatively, but also matter of factly to most people- and really have never had an issue. Have you read the new paper by Murphy, Leckman etc- "A way forward"- it should be linked at the top- I think it is a great overview.

Vickie- how is it going today?

There is a pandas support group in NJ. It meets monthly near Menlo Park mall, usually Monday evenings. Where are you? I think the link is on Saving Sammy website- if not PM me and I will send you info. I have been twice only, due to my kids having a rough winter, and it being difficult to get out at night. The facilitators, and members, are extremely welcoming and supportive. Eileen

Vickie- You are such a rock for everyone here! I know the stress you must be feeling. I just want to let you know- we have the worst imaginable here- two pandas kids, both with strep, and (fingers crossed, knock on wood, etc, etc) so far, they are okay. Hang in there- keep us posted...

Emerson- Having pandas is unbelievably hard. Being a teenager is also really hard- you are transforming into an adult- no growth like that comes without pain. High school can be really hard, because at the time it seems like your whole world. Put all three together and it seems impossible... Be patient, give it time, things will get better, and then things will get wonderful for you- we can all see it- the amazing young adult you are becoming, with so much to offer, who WILL have a wonderful life.

Hi Vickie! The first daughter diagnosed with strep, had the typical strep symptoms. She was fatigued for two days, and then woke up with 102.5 fever and sore throat. (last time she had strep, the initial onset of pandas two years ago, she cultured positive, but had only behavior symptoms). The older one was fatigued yesterday, and her anxiety was slightly increased (they are both still healing from December episode), so today I took her to the doc. She had a negative swab (quick and culture) on Thursday, today the quick was positive. Neither has had recurrent, or multiple strep infections, and I do not believe erradicating the strep has been an issue in the past. So far, the little one has bounced back with the clinda, and is feeling great. I know I can never know if the abx have prevented other illnesses, but my kids were never sickly before- both having an infection needing antibiotics about once every two years- which is now what we are averaging ON the antibiotics. Just makes me wonder if the antibiotics could do more harm than good. NOT making any rash decisions. I am wondering if there is any scientific explanation- that might say they would tend to NOT have a pandas reaction, or have a lesser pandas reaction to strep, while on antibiotics, even if the strep was resistant to that antibiotic. THAT would be a reason to keep them on.