dcmom

I agree with PhilyPA in the sense that- please parents- if you are stating something that is your OPINION, or a doctor's OPINION- please say so. Please do not type your or your doctor's hypothesis on here as fact- it is dangerous, and a dis service to the parents on the forum. S

We have urinary frequency, the constant feeling of having to go, the constant feeling of being wet down there, and the fear of accidents as a pandas symptom. I think for us, it is a physical issue that snowballs into an OCD thing. Is there any possibility this symptom appearing is pandas and coincidental with the starting of steroids?

We have successfully used IV steroids to stop/slow the autoimmune process post infection. We are now feeling the quicker we can respond to a flare up with this type of treatment, the quicker the resolution. For my kids, all signs of physical illness disappear, then we start seeing major pandas symptoms. I do not believe we have had chronic infection issues, except at initial onset (possibly strep thAt eas resistant to the abx used).

http://www.rigelweb.com/joomla/index.php?option=com_content&task=view&id=67&Itemid=74 A google came up with this. So- there is some science- typical shedding happens in the first three days, it is rare to infect someone else during this time, but healthcare workers working with immunocompromised patients are instructed to get a vaccine w/o a live virus. Hhmm. That REALLY stinks. I might be conservative- keep them out that day- then send them back.

GGggrrr! I have to say, I think I would keep them out- even knowing (and having gone through lots of issues). You might find out what time the mists are starting, and pick them up prior to that. I really don't know if science backs me up- but it contains a live virus, what if some kids shed it? We can't protect them from everything- but, that would make me a mess. What day of the week is it?

Hi - Sorry you are here. So glad you caught this so quickly! Finding the right antibiotic seems to be important for pandas kids. We recently used clindamycin to resolve culture positive strep in my pandas girls, and were very happy with the results. If the current antibiotic doesn't work, I would ask about this....

cobbie- So sorry- no real help here- just understand your frustration! We had MAJOR school anxiety here last year. DD missed much of the 2nd half of the year. I think homeschooling is great, if your child is too sick, or if it is what you want- but- I am with you, my kids go to a GREAT public school, and this schooling is GOOD for them. They thrive there, usually. Homeschooling is not something you should feel pushed into, AND, if you do start, it might not be so easy for him to go back. Do you know why he is miserable? Is it ocd? I think a great therapist could be a big help to your son, and you... do you have anyone?

OCD is weird. My kids have fixated on total non- issues, and have been fine with what I thought were big issues. OCD is not rational. My kids are a bit older, 8 and 11. I have come to the opinion, over time, that honesty is the best policy. If they end up ocd'ing over something- it will be a tool for learning. I have learned I cannot protect them, and by trying to protect them, sometimes it makes things worse. That being said- I think it is important to approach stuff like this casually, naturally and over time. We have discussed 9-11 certainly, although mostly not on 9-11. Much like the "birds and bees", I think the best policy is not to have a major "talk", but to have a constant "conversation" about big, tough subjects. So- while I don't know if an hour long special is appropriate (you will know when the time comes), I imagine it would be helpful to casually discuss 9-11 a few times prior to the service, and then answer all of their questions fully and honestly. If you think they are interested, yet not obsessing, and you liked the special, then maybe offer it. Kids (and especially our amazingly smart and sensitive kids who happen to have ocd) are always surprising...

Hi Arial- My younger daughter did have a several "accidents" (a couple at night, a couple during the day) during the worst of her initial pandas episode. She had never had issues like this before, and hasn't since. At that time (and some times since) she was having major rituals surrounding toileting. She would avoid using the bathroom if possible, and I do think this contributed to the accidents. I do also think there is a physical component here, as some of urinary function is controlled in the basal ganglia. My older daughter, who never had wetting issues, also had some urinary frequency. She said she constantly had the feeling that she needed to urinate, even immediately after emptying her bladder. She was older (9) at the time, and no ocd was involved with this issue, so I think it was a bit easier for her to handle. My thought would be that you may have a few issues; there is most likely a physical component of a frequent feeling the need to urinate, maybe this is causing him stress. Most likely there is also an ocd component (in my mind- triggered initially by the physical feeling)- maybe there is a worry that is making him avoid or postpone using the bathroom. I would consider treating this like you probably treat other pandas/ocd issues. Be kind and compassionate, don't make a big deal, don't scold- yet be firm about needing to use the potty, and maybe implement a temporary reward program to motivate him, and celebrate when he has success. I don't know if he will be able to verbalize an ocd fear- of course that would be helpful. I know you know all of this, and are on top of it- but just wanted to respond, toileting issues have been big here (thankfully not to many accidents, but lots of ocd/panic), so I totally relate. This too, shall pass

smarty- we didn't know right away, but soon. Thankfully, my dd is older (11) and very open (with me) about her fears....

HI Smarty- Sorry you are dealing with this. My dd had major school issues for the last half of last year. I am very anxious about starting this Thursday. One thing I can share, dd had school fear/refusal due to ocd. Last year we worked hard at getting her back to school, a little at a time, sometimes with me sitting in the office. Unfortunately, in hindsight- this was only dealing partially with the issue. This summer, through therapy at USF, we learned we had to face the fear itself. Her fear was of throwing up in school. We had to do exposure therapy, not to schoo, but to vomit. We did exposures like: saying the word, saying the word to other people, writing the word, looking at vomit photos and videos, writing scenarios of vomiting in school, etc, etc. She is still very nervous about school, and so am I- but I do feel we are getting at the root of the fear, and desensitizing her to it. We will know how we are doing in a week or two. I know this doesn't answer your question, but maybe if you knew what thought or fear exactly was bothering him, it could be helpful....

In my opinion- this is an irresponsible statement. There is no proof that IVIG "cures" the PANDAS disorder, and also no proof that it would be the only "cure". Pandas is an autoimmune disorder, very likely, there is no cure, but hopefully long remissions. I know he has treated kids with IVIG that have relapsed. IMHO none of his or our kids, have gone long enough to know if it is "gone". Until you can talk 10 to 15 year remission, in many patients- c'mon. This information goes completely against what Dr Swedo states, as well.....

So sorry I agree with LLM on zoloft- be sure to start at very low dose, and increase if needed every six weeks. Zoloft can cause the sleep issues- that is a side effect- my dd had it with zoloft, it did go away after about 2 weeks. We discontinued zoloft after a few months, as it didn't help. The only things that have helped us with the anxiety and OCD are immune modulating treatments We also saw OCD as an underlying cause of lots of the defiance

Every insurance plan has different plans for different employers. We have United Health Care- and although I HATE insurance companies- we have been pretty lucky. My kids have both been on daily antibiotics for 2 years, lyme protocol of multi antibiotics for several months, had iv steroids in the hospital and at home, and both had PEX. It has ALL been covered. They did initially deny pex, we had to appeal, but they covered it. We ended up approved at the last and final appeal, and we did enlist the help of the neurologist and dh's HR dept. In the end, however, DH's company is large, and they are self-insured, which means they pay all of the costs, UHC just administers the plan. Maybe this is the reason that we were approved in the end, I think if we lost that appeal, DH's company would have the option to override the denial and approve it- I think it has been done in rare cases before. Good luck- I would push, push, push. In the final week: myself, DH and his HR president called UHC every day (we were somewhat fortunate in the fact that the HR president himself, had recently been diagnosed with a neurological disorder and I think he was receiving IVIG.). Our doctor also was on the phone with them several times, and wrote a letter of medical necessity, stating that any delay in this treatment was seriously jeopardizing my daughter's health and safety.

Nancy- so happy- you and your son are truly an inspiration, there is no doubt he will go on to do great things!!

Eljomom- I cleaned up my inbox.....

Just wanted to add that both girls are off ALL abx and supplements (except vit D)- one since mid June, the other for a few weeks- and both continue at about 95%. We have some residual OCD we are dealing working on with ERP. We see a pandas doc tomorrow to discuss a protocol for the school year.

I will briefly add my 2 cents for what it's worth (we are still out of power due to hurricane!). I agree, and our experience has been similar to pow pow. My kids were completely "normal", until they had strep 2.5 years ago at ages 5 and 8. They had overnight insets of OCD plus other related issues. For us, pex and steroids (both oral and IV) have been major life changing treatments. I personally cannot imagine if we had not used them. At the same time, I was interested in Lyme due to the talk on the forum. I tested - and of course both had some positive IGM bands. We followed that path for a while (multiple, pulsing antibiotic schedules)- and it did NOTHING for us. I didn't realize how uncomfortable it would be to give my kid a slew of abx, for something I was not convinced of. We abandoned that path, with the reassurance of a couple of top notch docs, well connected with a prominent lyme researcher. Following the pandas path has done well by my girls. The have had long term relief from pex (1 year, 1.5 years)- but they are not cured. PANDAS is ( IMHO) an autoimmune disorder- this most likely means no cure- just hopefully long term remmission. I know many on the forum are opposed to the need for a "label"- but I completely disagree. If you have a child with Lyme- you may be advised to avoid steroids (although I don't think a month long burst woul be immunosuppressive, and may help you figure stuff out)- yet steroids (and IVIG, and PEX) have been lifesavers for many of our PANDAS kids. In the end, it's going to be your call unfortunately . And that is why this is so hard. Your doc, while human, has been extraordinary for my family (and several others on the forum). This doc pushes for 100%, fights the insurance companies, and sticks their neck out to treat this "controversial" disorder with "experimental" treatments. This doc has saved my kids from continued profound suffering. So while not perfect-?worth taking the advice seriously. I hope you can find your direction, and find peace with that, and that your son continues to heal.

Hi MJMama- Sorry you have to be here, dealing with this. I have two daughters with pandas. One diagnosed very quickly, one after several months. I will say, that although initially both recovered after 30 days of antibiotic- since then, we have had to use immune modulating treatments to stop the autoimmune process. I don't know your story. Did your daughter have strep? If so, are you sure it was cleared? You are in pretty good hands with Dr T, all I would say is to push him to not settle for less than 95 to 100%. My personal new protocol for my girls, which we did this spring, is a course of clindamycin to clear the strep, and then a round of steroids to stop the autoimmune process. Talk to Dr T- he will help you sort it all out.

Nancy- Interesting I know next to nothing about histamine, I know Dr T is hypothesizing it plays a role- he is thinking low histamine. My kids were both tested, and normal. I do not see any signs of histamine issues either way, with them. Low histamine (I think) is thought to play a role in bipolar. My conclusion- this is all a shot in the dark, the scientists/docs know very little, and sometimes what they think is backward if not just completely off (I am not talking about DrT- he is great- just the whole medical/ scientific community in general). If you think the anxiety is causing the histamine issues- you are probably right....

If you can- get to the doc so he can see the rash. Most likely it is from the illness, or a "side effect" and not a true allergy. An allergist may be able to tell by seeing the rash.

Hi Dut- I am SO sorry. I have, at times, been at the end of my rope with my dh. Mostly with his non recognition of ocd or pandas behavior. I don't think there is any right advice here. Pandas can test a marriage, daily. I can only tell you what has worked (somewhat) for me. I think sometimes we need to approach difficult spouses (I am being very PC and not saying husbands) like we would our difficult children So, in random order: Do not put a verbal demand on him, or push something to an argument, where he might just dig his heels in, in anger. Ask him nicely for what you would like to happen, at a good moment (not when he is hungry, cranky, etc). Do NOT debate or argue it. If he is not in agreement, maybe you could agree to discuss it with a pandas specialist- and both agree to take their advice. Let what you can go, complain and vent to us, your girlfriends, your sister, your mother. Realize that different people handle things different ways, and that he is maybe doing the best he can. Does this make sense? My dh has been thankfully on board MOST of the time. But I also do everything, he works a lot. We had a rough year, about 6 mos into pandas. We are MUCH better now, and I can say that for the first time since this started, I am optimistic about our married future! (Smarty's repeating technique works really well too-) Don't know what to tell you about the strep tests- DH and I both got tested once or twice- never had strep- we don't go for swabs much anymore- then again- we don't have a chronic strep issue. Hang in there- you are NOT alone .... (Hey- in 10 years can we all get together for a cruise or something? I am sure we'll have LOTS of stories, and hopefully we'll be somewhat on the other side...)

I just posted a response to this same issue under "Lost my temper". We are dealing with the aftermath of major onset of panic/ ocd. Due to our accomodations and letting things slide- we are now left with lots of frustrating behaviors. It's basically back to the terrible twos, with a "timeout" and reward program- but it IS working. Look at my other post for a little more details.

Beeskneesmommy- YOU ARE A GREAT MOM! This is a difficult illness for the whole family. We are sorta where you are now. I have two girls (age 8 and 11) who have NEVER been a behavior problem at all. Always sweet and a pleasure to be their mom. Our most recent pandas episodes hit in April (strep). Both had major ocd/panic onset. We found ourselves, in the midst of their complete debilitation with panic ocd, accomodating a lot, and letting a lot go. They are both in a pretty good place now with ocd, some residual stuff we are working on, but no more panic. BUT- we have found that due to the accomodations, and the letting the behavior slide, during the worst of pandas- we have come out the other side with LOTS of bad habits, control issues, and unpleasant behavior. GGggrrr. We are in FLA for an ocd intensive, and have been working on/discussing this defiance a lot. We have a new plan in place (and I feel a little like "duh"- I was always a very competent mom- but having these issues thrust on us overnight has made me feel a bit like an idiot). So- basically- it is back to "time outs". When I get home, I will post on the details- but we have raised the bar back to where is age appropriate. We speak a lot about expectations prior to an event. They are given one warning (except for aggressive physical behavior - no warnings). They they are given a time out. (5 minutes) They are not physically forced to the time out- but until they do the time- they are cut off- no talking to them, no attention, no food, no tv, etc. Basically- its a little like back to treating them like they are two (although we didn't really even go through the "terrible twos"). Along with the time out, if appropriate, there may be a loss of a privilege. We have only been at it for a few days, but it IS helping. They calm down quicker, they hate the time outs, and it gives me a structure, so I don't get exasperated or feel I have to yell. I think it is REALLY going to help my husband and I be consistent with each other also. We are also adding a "chip program". With this, they will get chips when they do an ocd exposure, fight ocd, are kind, or do something good (chips can also be used as an incentive). They will collect chips, and use them to "buy" from a menu of options ( toys, movies, treats, etc). This will give us the positive incentives to do positive things, or initiate good behavior. We had ABSOLUTELY no need for this type of program before our most recent pandas episode. We were able to be fairly lax, and life went smoothly- so that was fine. Things are different now, so we need to run a tighter ship (hopefully for just a while).

If you live in the DC metro area- you are really lucky. We used to live there, and when there were actually able to use Dr L for all pandas related care. I pre set up appts almost monthly. We would attend many, but cancel if things were going well. Our ped in DC was useless. PM Tmom- she might have someone...