dcmom

THanks, Nancy! Well off to the doc tomorrow- but I am starting to think this is a cold, as the symptoms are morphing a bit, her sister seems like she might be getting it- and now I hear her BFF and brother have come down with a bad cold. Good news- that maybe we won't need to deal with a ton of allergies long term. Howe ver almost certainly guarantees us a spike in pandas issues Calling Dr T

Hi Nancy- This is timely for me. Older dd (11) has never had seasonal allergies, until now. She had a short allergy bout a month ago (diagnosed as allergies by ped), and we think she is having another (could be a cold, plan to see ped for her opinion Monday). Stuffy nose, sore throat, coughing, etc. She is on flonase, advil (more to hopefully avoid a pandas flare- which hasn't happened yet), mucinex (was on zyrtec, changed). Not seeing any help to the suffering from these. If we get confirmation of allergies Monday- I am going to try the quercitin. I am wondering are you saying you see a difference with the allergies from the pepcid (or the pandas)? This I have in the cabinet, so could start tomorrow night. Assuming these things made a difference in the allergy symptoms- did they help even after the allergies had begun (or did you start prior to allergy season), and, how long did it take for you to notice improvement? As always- thanks!!

Yay! Great news!!!

nicamom- You are not alone! I would HATE to see you go to NIcaragua without a plan of action If you cannot get into Dr L- I would suggest that you take a trip up to NJ to see Dr Trifiletti. Let him do some bloodwork to screen for any other issues- he is a neurologist, super smart, and really gets pandas. If you can get antibiotics and maybe prednisone in Nicaragua without prescription (and are relatively sure it is safe- I have no idea if there are issues there) then IMHO you are set - just talk with doc to figure out what dosages you might take, etc.

wendy- I am sorry you are experiencing this I have two daughters, 11 and 8, with pandas. They had sudden onset 3 yrs ago with strep. You are lucky to be in Baltimore. The best pandas doc is in Bethesda, MD. Make an appt today- she is usually booked out for months. Her name is Dr Elizabeth Latimer. She is a neurologist. She has treated both of my girls. She is a very kind and compassionate doctor. For persistent strep- I would try clindamycin. Until you can get to Dr Latimer, I would keep her on antibiotics (if possible) and try dosing her with advil. I would try dosing her at the max dose for five days, and then maybe once per day for a couple of weeks- if this helps. Advil helps my kids- but it didn't help when they were at their worst. We found it very helpful to have a therapist as well. Good luck.

I cannot comment on Dr B because we do not see him. I will tell you however, after a few years, of lots of specialists, this is what I have learned: in the end you want the best care for your child. PANDAS is a complicated disease, no question, with potential for a child to need urgent care. In the first year of diagnosis, I think it is reasonable to see your pandas doc monthly. With complicated labs- most specialists will require you to return for a follow up to discuss the results, I do not think this is out of line. Make it a practice to request a copy to be sent to you by the lab- you can also call the lab well after the fact for results instead of bothering doctor. I would advise you to leave each appointment in the position that unless there is a real emergency- you will not need to contact the doctor. Doctors offices- especially specialists- are just not staffed or set up for lots of phone contact. Go to your appointment with a list of questions, try to look into your crystal ball to determine ANYTHING you may need prior to next appt, get any scripts needed, ask what to do if things go bad. If you see the doctor monthly- okay every other month- during your first year- the doc will get to know you. You will most likely be able to hold questions until next appt. SAVE your calls to the office in between appts for REAL emergencies. I am sorry if this sounds cold- I do not mean it to be- I just think that you need to "work" the doctor's office to benefit your child most- not in accordance with what you think is right. There are literally about 4 docs that treat pandas regularly and aggressively- IMHO it is not a great idea to bash them on a public forum.

hello- I have two pandas daughters, one who had initial onset at age 5.5. First, did your doctor do a throat culture for strep (vs a rapid strep test). For a throat culture, they would not be able to give you the answer that day. It is imperative that a culture is done, not just a rapid. If it were me, I would wait 24 hours and have another throat culture done (if you don't want to go to the doc, maybe a cvs minute clinic or urgent care). If this is pandas, and is caused by strep- it is REALLY helpful to get that positive culture. It is possible to get a false negative (not highly likely, but given the stakes, I would re test). Secondly, for a 5 yr old to go to be normal, and wake up riddled with ocd screams some type of infectious cause vs "normal"ocd. PANDAS is triggered by strep, but more research is being done into PANS (a new label that points to many different triggers). OCD and urinary frequency are HUGE red flags for PANDAS/PANS. Most importantly I would GET TO A PANDAS SPECIALIST ASAP. Tell us what part of the country you live... we can make suggestions. In the meantime, if you could get antibiotics (zithromax or augmentin) and/or dose regularly with advil for 5-7 days.... I would start there. (I have heard of someone having luck with oil of oregano- I am not typically into "naturals" over Rx, but if I couldn't get antibiotics I would be doing the ooo.) I would also suggest finding a therapist EXPERIENCED in ERP (exposure and response prevention) for ocd. good luck- use the parents here, as they are an amazing resource and support.

I think the best idea may to be to post questions like this on both forums. It really is a lyme specific question- even the subject shows that- however I understand wanting the perspective of "pandas only" parents. I think, because of the heated discussions in the past, that pandas parents will feel more comfortable answering it on the pandas forum, and maybe all are better served if lyme parents can answer it on the lyme forum. However so far all have discussed with restraint Now to the question- I know nothing about Babesia, nor do I know what type of test you had. However, the reality is that antibody tests can be completely messed up for someone with an autoimmune disorder (or who have had Ivig in the not too distant past). Your best bet is to either- pursue testing that is not antibody based to confirm or rule out diagnosis, or to wait and see- redo the bloodwork in two to three months and see where you are. Also I would follow symptoms. If your child is in remission- I would not treat for anything- if your child is still symptomatic, obviously you may need to pursue. Hope this helps.

dedee- I meant to pm you....

If you have a second strep infection in 3.5 weeks- typically it is considered that the first one never went away. For those who think the kids are having trouble clearing the strep bacteria, I would suggest considering clindamycin. This is the antibiotic of choice used for carriers- with repeated infection I would think most doctors would be willing to prescribe. My girls both took clindamycin when they contracted strep while on multiple antibiotics (one was on zith plus augmentin) and it cleared the infection immediately. In the case of pandas- clearing the infection does not always resolve the pandas symptoms. Sometimes you need to consider taking another step to tamp down the autoimmunity/ inflammation with ibuprofen, steroids, IVIG or PEX.

VA mom- just wanted to say I am sorry. The urinary issues you speak about are a huge red flag for pandas. This, along with major separation anxiety were my daughter's first issues. Call Dr Latimer tomorrow and get an appt with her. In the meantime if you can continue the abx, and even throw in 5 days of ibuprofen. Good luck!

I broke two cheap blenders on smoothies. I finally bought a nice kitchen aid mixer, which has lasted (so far) through two years of smoothies made with frozen fruits and ice. It was over $100- but not too much. I think Jerry Seinfeld's wife has a kid's cookbook on sneaking veggies in. Thankfully, my kids are pretty good. Even my pickiest likes salad and most veggies if she can eat them raw! I am thankful for that

S&S- I am sorry for your daughter's suffering. My heart goes out to your whole family. This is so unfair. I am just going to throw our situation out there, FWIW for you. I am not familiar with your daughter's story. Did she have an overnight onset? Did she have strep? When was she tested for lyme? I have two daughters with pandas. Both were completely normal, happy kids. Both got strep and within a month our house was out of control. OCD and the accompanying temper tantrums, restrictive eating, sensory issues, defiance. Since, we have been able to get both to remission, however they do flare up with illness, and we have to treat them again. In the beginning this was really hard, but now, with the help of some great docs, we have been able to streamline their treatment protocol. About a year and a half ago, when lyme talk on this board was heating up, we decided to get them tested in hopes closing the door on that issue. They were both negative via standard western blot, but when we ran Igenex both came up with some positive IGM bands. I was shocked. We started down the trail of treating lyme, which for us was a mistake. During this time, and on multiple antibiotics for lyme- both contracted strep. It was at that time we needed to make a decision, as they were going downhill due to pandas. We opted to treat them with steroids for pandas, and both went into remission for almost 8 months- until they got a virus this December. We were able to treat that quickly, and they did fine again. At the time, we consulted with many docs about lyme. LLMD said treat, mainstream docs said test was garbage, two more conservative yet chronic lyme treating docs (both recommended by Dr Fallon) felt lyme was not our children's issue and to continue treating pandas as we had. So- I guess what I am saying is that if you have been treating for lyme- and this sh$% is still going on- it may be time to move on. Steroids CAN make things worse, but can also make things better. PEX would be your safest (rarely a negative reaction) option to aggressively treat pandas- and not bother the lyme issue. All I know is that for my two, if when they spiraled out of control with pandas issues, I kept them on only antibiotics, they would barely be functioning now- yet due to immune modulating therapies- they are normal and happy. I don't know that this is the answer for your daughter- I just wanted to throw it out there. Since having pandas- has she ever had a 95% remission for a good period of time? For me that would be a clue. I know money is an issue- but I may consider the new lyme culture test- if it is possible, to really confirm the lyme. The other issue is that some docs think that some cases of lyme clear, yet leave autoimmunity in their wake (some docs don't think this- I would imagine there is the possibility of both scenarios)- if this is the case for your daughter- again Pandas treatment would be helpful. Hopefully some of the lyme moms will have some advice for you..... Hang in there!

Dedee- I talked to dr T about this. One of my dd's has one hetero MTFHR mutation. He did not believe it was relative to pandas, felt typically it was not a concern, we are testing homocysteine levels and if there is an issue then we will supplement. If you look into this, I believe something like 30% of the general population have it. Since I have two pandas kids- who so far have had almost an exact same course as each other- when one has something like this, and the other not- it kinda confirms that it is not relative to pandas. It is likely something to monitor....

they might be slightly scaly. Made a new derm appt for MOnday.

Ok- so I have not examined them that closely, because I am trying not to make a big deal. But- they are not raised, they are not peeling, they do not appear scaly- yet are not completely uniform looking, and they seem to be a darker skin color- slight tinge of brown/skin color.

Thanks everyone! Sigh- need to find a GOOD dermatologist. It is hard because she is old, so she is in the room with the doc the whole time. I DON'T want to make a big deal- in case something cannot easily be done. But at the same time I want to know definitively what it is. I thought ringworm initially because at the same time as this started- I got a case of athlete's foot (which I have never had in my life before, and hadn't been to public showers, etc). I thought it was such a coincidence. I had also just given her a 10 day course of diflucan that I had in my cabinet (Rx'd to her quite a while ago), because she seemed to be having stomach issues with antibiotics- just wanted to be on the safe side. But derm said no. Not that I have that much faith in him, however. I too think hormonal- because she is definitely "developing". I just haven't found anything online that has struck a chord. Anyone know a really great dermatologist in NYC or NJ?

So- I am thinking this is not pandas related (though everything seems to tie in after a while, doesn't it)- but you guys are my "go to" moms for sensitive issues.... DD (11) has gotten some dark-ish patches on her face. First one appeared. I wondered if it was a fungal infection? It coincided with me giving her a course of Diflucan. We tried lotrimin on it for 2 weeks- no improvement. Then we went to see a dermatologist. He thought it was likely excema, and gave her a steroid cream to use for 5 days. On the way out the door he mentioned it could also be a new mole. No improvement with the creme. Fast forward 2.5 weeks. The patch looks about the same- it is a small (maybe the size half the size of a penny), roundish, borders not defined, patch of skin that seems just a little darker than normal. This one is on the side of her cheek. Now there is one closer to the hairline, and also one on her forehead. Yikes! They are fair- thank goodness- but don't need to tell you that it is upsetting for a blossoming 11-yr old. All I can think of is this- diflucan related? (she has been off for close to 2 mos though). Puberty related? Autoimmune related? Will be looking for a new dermatologist this week..... Thoughts or experience appreciated.....

fixit- I think the natural statins are fine- but it's that the amt of statin in the red rice yeast can vary (there was some study done)- which means some days you may be getting correct dosage- some days not- serious, I guess, if your cholesterol issue is serious. While I have little to no respect for the FDA, I do have concern about supplements in general, and the fact that they are fairly unregulated. We use very few, hopefully there are resources of unbiased parties that research the contents of supplements and compare that to their claims- I am thinking "consumer reports"- I have not done this research- as I said we don't use many supplements...

Just an fyi- re red rice yeast. There is a little controversy with this supp. Apparently red rice yeast has naturally occuring statin in it. The govt ordered all statin removed- hence the product may not work as well now. However it appears that not all companies are successful at removing all of the statin. THe result is by taking red rice yeast, you may get varying levels of statin. Not inherently dangerous- but questionable- esp for a child. Just an fyi...

Ugh! Really? Another thing to test/ worry about! I am so sorry that you are dealing with this. Unbelievable. Do you know WHAT the relationship is? Is it the stress of the ocd? Can stress elevate cholesterol? What does the doc want you to do? Do they put a child on a statin? Does this type of cholesterol, or does cholesterol in kids link with health risks like it does in adults? We have not had cholesterol tested. We just (an hour ago) did a blood draw on both, so I imagine it will be a good (hopefully) 6 mos before we have another. Will try to remember to add it to the list then. I will talk with DR T about it at our next visit- of all the treating docs- he would understand the link the most, I think, I am with you about limiting diet. I am sure you guys eat relatively healthy. My kids did not eat with pandas- I see A LOT more risk in anorexia than heart disease for your dd in the next 10 years. For a lot of people, actually, diet does not make enough difference anyway. I really have no help- just commiseration....

Just to chime in Our totally gifted ERP therapist told me if you meet an erp therapist who talks about relaxation.....run. The kids have to learn the anxiety curve. This being said, he did however intuitively seem to know JUST how far to go, take them to the edge, yet not over. This is done by breaking the ocd down into baby steps. I think that for pandas- if one was concerned about stress- which IMHO is a VERY valid concern- I think dosing with advil or other anti inflammatories could be helpful....

You said you saw a big improvement for a while- what can you trace that back to?

Just throwin' this out there.... My older dd had constant perceived stomach discomfort, and ocd worries about going out with stomach ache, vomiting, etc. This issues started post- strep with her initial flare. This all resolved with pandas treatment, and has not returned. I think it was a combo of sensory and ocd. Don't know if this would be the case- but something to have on your radar. (My dd had no physical symptoms - diahreea, vomiting, consitpation, etc)

Hey bulldog- Honestly- we cannot keep our kids or ourselves in a bubble. I am not a scientist- but we NEED exposure to bacteria. Living a normal, healthy life is all about really, honestly assessing risk vs reward, and the reality of the risk. To me, good old fashioned precautions are the best. Wash with soap and water, don't share foods/ shake hands/ kiss a sick person- BUT in order to live a normal life (just think public transportation alone!) you will need to let go. It is NOT healthy to worry about germs all of the time. As Ruby Redfort says (in my daughters fave book Clarice Bean) - It is the worry that you didn't even think about that will be your worst worry! We cannot keep our kids from getting sick- I believe ALL of our focus and energy should be on WHAT to do, and HOW to recover them when they do get sick. Once you recover them from an episode a couple of times- you will feel more confident. Honestly- If I were you I would see a psych. You need an impartial person who could discuss with you what would be "normal" precautions for germs, and what would be going overboard. Now that you have a child with ocd you don't knowingly want to reinforce any germaphobia. I would find a psych who specializes in OCD therapy. You know, our psych threw a skittle on the floor, stepped on it with his shoe and ate it! He did not die, nor did he get sick (we saw him everyday for the next 2 weeks). The thing with ocd is that you have to go BEYOND what would be "normal" in order for the cbt to stick. Think of it with people who have a fear of flying. The reality is you are safer in the air than in a car. The reality is - sure- there could be a crash- but it is NOT likely. Is it worth living your life avoiding planes because of a "perceived" risk. I say no. You could get hit by a bus tomorrow- and you would never have gotten to travel. It is the worry you didn't even think to worry about that is going to get you! I will tell you, if you really do have some ocd- you will need therapy. If this has all come about because of pandas, I think in time (a few years) you will slowly move back to a slightly more anxious person than you were before. I know I am rambling- but I hope this helps. My daughter had a fear of germs during her first episode (among other things)- so I know how limiting it can be. It is NOT the life I wanted for her, or for anyone on this board. Good luck!