dcmom

We had stuttering as a pandas symptom. Came with second episode, cleared with treatment and time. Possible the flu shot stirred up the immune system. I am sure it will get resolved...

Thanks PMom! Very reasonable. I think there are several cases: PANDAS- which by definition is an autoimmune disorder triggered by infection PANDAS with chronic infection- pandas (see above), complicated and more difficult to treat because of an ongoing active infection (mycoplasma, lyme, maybe intracellular strep, etc) This category may include some of our kids who were originally diagnosed pandas, and subsequently lyme. Lyme- Neuropsychiatric lyme, which is a chronic infection that may cause many of the same symptoms of pandas (possibly even temporary autoimmunity?) Maybe some kids her were maybe diagnosed with pandas, when they should have been diagnosed with neuropsychiatric lyme. Finally, I think pandas is an autoimmune disorder, which (for most) once triggered, may not be able to be cured. If the immune system's b cells have created a memory- there is not a known way to erase this. I am thinking most lyme parents are led to believe that when you rid of the infection the child is cured? The autoimmunity is resolved- no b cell memory? Although- I have read about lyme relapses- does that mean the bacteria is dormant but not gone. I know many don't like to get stuck on diagnosis or labels- and I agree (a little bit)- it is just important to do what works. That being said, as a parent it helps me to have more of an idea of what is really going on, and what to expect, so I can deal with the present and the future. Pandas, Lyme and pandas with lyme, would create different implications and questions in my mind.\ Would like to hear everyone's thoughts

When you let your kindergartener go to school in pajamas and rainboots, without brushing her hair or teeth- and you are just thrilled she is there I can (sort of) find amusement in things now, that we are in a more stable place. I am truly a changed person, and a different mom. I am stronger, and appreciate and love my kids more in every moment, and have truly learned what is important. Wish it didn't have to come the hard way, and at their expense

Hi Frannie, Eileen, from the NJ support group, Welcome, welcome, welcome!!!

I am so sorry try (if possible) to slow her life down, focus on just doing what is needed, let other stuff go. We had the girls eat meals of nutritious small bites, in front of the TV when things were bad hoping you get a break soon

This subject is near and dear to my heart. My now 7 year old daughter has had, and has now, this issue. This is how pandas started for her, and has been the most difficult symptom to get rid of. It started with frequent trips to the bathroom, frustration, not feeling dry, changing panties, and eventually avoiding using the bathroom for as long as possible. After PEX, this symptom was completely gone upon returning home from the hospital. It returned during a later flare up, finally went away during a steroid burst, and was gone most of the spring and summer. It has returned since early october since her friend/classmate/busmate had strep (probably undiagnosed for 2 wks). A few things- Dr Latimer spoke to a urologist and said the following- there are two controls for urinating, one interior and one more exterior (HA- I am obviously not a biology scholar- can't remember the appropriate terms). The basal ganglia is the control center for the interior control. So- I think there is a definate and real biological issue. Yet, my daughter has ocd. This physical issue, very quickly, became a major ocd problem. At its worst- she spent close to 4 hours of tears and frustration in the bathroom. At its least (where we are now) it is worst in the AM, she tries to avoid going to the bathroom, is annoyed 5 minutes prior, and 5 minutes after using the bathroom (some yelling, whining and occasional tear, and then moves on. Like pandas, I really think the treatment needs to be two pronged. You must address the medical issue: whether that is antibiotics, advil or steroids. (We are not doing anything for it now, other than our usual daily abx, because otherwise she is really good- and I prefer to save the other meds for when things are getting in the way of her happiness or her functioning). The second is therapy, specifically ERP. There are many moms more versed in ERP, but a few suggestions: Get the book "What to do when your brain gets stuck- A child's guide to overcoming oCD." This book was great for my dd's. I find it best to actually let them decide which tool they want to use to work one a compulsion. However, an idea would be to use habituation. We used the term GUTI (get used to it). My daughter was 5.5 when we did this, you may have to adapt for an older child. We played a game where you drew the name of a piece of clothing out of the hat (dad's watch, dad's tie, mom's hat, etc). Parents play too- you wear the clothing item you pick and then complete a task (that is fun). At the end of the task, you can discuss how you Got Used To It. Initially the new item was really annoying, you really noticed it, but after time and distraction it went away. Then you tell her you are going to try to apply this to the bathroom. See if she can go to the bathroom, wipe, and then leave. Then immediately do some really fun and active activity. (set up a long obstacle course is an idea- time her and compare times each time) Then, she gets a reward. By this time, hopefully, she has gotten used to it. It will get better

Suggestion after the burst, use motrin for a week to avoid any rebound inflammation

Awesome!!!

Both of my girls had T&As. Both tonsils were FAR WORSE than the ENT expected once removed. Enlarged, "juicy", cryptic, etc. Obviously infected and/or damaged. One of their's appeared enlarged prior, the other's appeared totally normal prior. I am glad they are gone- possibly they could have been harboring a current infection.

Enjoy your boys! And keep the good news coming (pancreatitis aside)

Unfortunately- most don't take insurance.

Although it is hard- I think being proactive with dental work is the best solution. Cleanings every 3 months, and addressing any issues (like cavities)immediately. Minor dental work could equal minor flare. Big dental problem ??

Awesome news MD Mom!!!!!

I am sending good thoughts your way....

This is not what you want to hear- but I believe the more info the better: Both of my girls had H1N1 last year- clinical diagnosis from their doc. It catapulted them both into a big episode- as bad as strep. For the oldest- we actually were not sure on the pandas diagnosis at that point, so we did nothing. She went into an exacerbation that eventually ended us up doing pex. For the younger dd- who was already diagnosed with pandas, and just had pex- we acted very fast. We did Tamiflu within 24 hours of flu onset. This stopped the flu within another 24 hours. Within 24 hours of fever subsiding, she was sliding fast into a major pandas exacerbation. We waited about 48 hours to be sure (there was no mistaking it- she was barely functional) and started a steroid burst. By about 2 doses she was improving, and within 3 days she was back to about 90%. I don't want to scare you- but let you know. I don't think, of course, that will be everyone's experience- and I don't think every strain of flu would have that effect. I would consider getting to the doc to determine IF he has the flu, and if so what strain. You might consider tamiflu- or just making a plan for if he goes into exacerbation. We knew right away- it was VERY clear it was not a blip. Have you done ivig? If you can't do steroids, and he does start to dramatically backslide, maybe you could go directly for ivig. Steroids have been a great tool for us, is there anything that could have a similar effect that could be used? Hoping he feels better, and you see nothing...

Ok- I have made an appointment to (hopefully) rule out lyme. My kids are still doing well, yet are still reactive to illness with minor flare ups of pandas symptoms. I, however, can't sleep well at night leaving a stone unturned, especially since we have always lived in lyme areas. I made an appt with a doc that was personally recommended by Dr Brian Fallon of Columbia. Dr. Ernest Visconti. Apparently he is also pandas knowledgeable. Please pm me if you have any specific knowledge of him. Thanks!

phasmid- I am so sorry. My dd's both had very restrictive eating during pandas- it is very scary and upsetting. One was sensory (i think) and one was ocd- fear of throwing up. How long ago was the steroid burst? Is it possible to consider another? Can you try increased abx and advil for a few days- maybe it is just a blip? Have you done any therapy. I think it is really important not to have a huge reaction to him, but call it what it is. I have learned a lot from Meg's mom Maybe sit him down once and tell him things like: you are not fat, people should not concern themselves with weight- but health- and that means everything in moderation: healthy food, some junk food, some exercise. Tell him everyone feels like they are "fat" sometimes, but the fact that it is stuck for him means it is ocd. After that- I would not continue to reassure him if he asks, rather point out that this is ocd. Consider therapy. At the same time, to keep him eating, make very appetizing meals with lots of "small bites", always have healthy snacks out on the table, and maybe let him eat some meals in front of the tv (my kids would often eat much more if they had their plate in front of them during an entire movie).

Hi Jag, Hope things are going ok. I find in some ways, the improved, but not 100% state, the hardest to deal with. When you are in crisis- you throw anything and everything at this disorder to get rid of it. When you have improvement- yet are not 100%- it is so much harder to make judgements- you don't want to rock the boat, yet you want your child fully back to themself. So- I will give you my thoughs FWIW. So far, I really feel that this is an auto immune disorder. In other words, an infection triggers it, but then it takes on a life of its own. I really think the antibiotics (in most cases- minus immune def) clear the infection. But, it takes time and medical intervention (sometimes) to stop the autoimmune process. I can illustrate why I think this: my daughter was much improved on antibiotics (it took a GOOD 4 weeks)- yet she still had major issues. She had pex- which does nothing to clear infection- and immediately remitted to 100% and held the improvement - until she got H1N1. So- I guess I am (right now) a big believer in Swedo's science. I can't really comment on IVIG, as we haven't done it, other than to say the process is less clear than pex. Also- I really think time is a big factor in healing- no matter what course you take.

eljomom- I completely understand your frustration. I have been very careful and resistant to having testing done on my kids- it is torture for them. My mantra is- if the results could change our course of treatment then we do it. If not, I say no. Lots of docs like to see numbers- but it is not always necessary. That being said, I would advise you to do a full workup now, at the start of your journey- prior to lots of antibiotics. You should certainly test for immune def, mycoplasma, lyme, and if you haven't had positive culture, run titers. I do think the Cunningham test is helpful. For my kids, everything (so far) came back normal, except for the Cunningham test. It is helpful to have some results to back up what we know is going on.

Nevergiveup I totally agree- it is SO important that we feel empowered to go with our mommy instinct. It is great to have smart docs in ourcorner, but in the end, there are still SO many unknowns- we must be the driver of the bus. We have to do our research, know our kids, and follow the path that is WORKING.

Agreed pmom Dr T is a brilliant scientist, and Dr C is a well respected researcher- and is usually very cautious about her statements. LLMD's, while I am sure are fabulous, may see things through a "Lyme prism" from their clinical work

We have seen several flare ups with both pandas daughters due to immune challenges. Having the flu, losing baby teeth, exposure only to strep, and one time exposure to respiratory illness. The exposure flare ups are the mildest, and have a more predictable pattern- usually subside a few days after exposure is over. Typically, I up our antibiotics a bit, and dose every 8 hours with advil - I do this for about 4 days. This has really helped. We did have one occassion where younger dd was having constant exposure to strep in school, week after week, eventually we couldn't get her back to her 90-ish% baseline, so we did a steroid burst. This did help. Time is also a factor here. Good luck, hang in there- it is always "white knuckle" time for me

One of mine had piano playing finger thing

No tics 2 girls w/ definate pandas

We don't believe we have Lyme. Let me add another part to this question: has anyone had a negative Igenex? (we have not done igenex)