dcmom

We have the same experience as EA mom- there is NO WAY I could spring it on either child. Both INSIST they need to know. I usually tell them WAY in advance, and then remind them every week until the appt arrives. I try to work with them to not "worry and stress" until the hour before..... I think it is a life lesson. But- I think you need to go with your gut! And yes- we have carried (the little one) kicking and screaming (literally), but she usually calms down by the time we arrive. I usually have two adults escorting her to appt for this reason. Older one has always wanted to go, never been so bad that she doesn't want the help (thank goodness!).

Hi all! My two pandas girls were fully vaccinated (pre pandas) until 6th grade. We have since took the religious exemption. One has missed, and the other will miss in a year, the Tdap and the meningococcal. While both have been doing really well, pandas is still with us, and I would be very, very concerned to vaccinate. Both neuros that we have seen agreed that the vaccines should be put off for now, until it seems pandas is a distant memory. To be honest, I am not expecting that day to come, just expect that we will be able to manage what comes up. What I am now wondering is what about college? I think most colleges require these vax, and don't have very lenient rules about exemptions. Has anyone run into this yet? Does anyone have a plan for this? If we do need these vax for college- I want to strategically plan when to get them- maybe btwn frosh and soph years. Thoughts?

Hi Lisa- It sounds to me like you are doing all the right things. I disagree with pr40 that language and disrespectful behavior should be acommodated, ocd or not. It is a very dark road to go down, at the end of it you will not recognize the family you had- we have been there. While at USF we spoke about this issue a lot. We were taught, and now try our best to practice, maintaining age appropriate expectations. This goes for behavior as well as responsibilities. For behavior, we use the "time out" procedure. If our kids misbehave, they receive a 4 minute time out immediately. We do not escort them to their time out, nor force them to take it, but simply they get nothing from anyone in the family until they do. Until they take their time out, no one speaks with them, they don't get food, driven anywhere, no computer, no tv, etc. They quickly learn to get the time out over with- and they also hate it. It is great, because we use it mostly instead of punishments such as "grounding". We, too, worry about depression, and ocd of not leaving the house- so we do not like to restrict activities that make them happy- however if needed, we will add a punishment to the time out. I don't necessarily think time outs, or any consequence will work quickly on behavior due to impulse control (we are seeing a little of that now), however I think it is a long term solution. I think they need a combination of consistent consequences, and conversations on strategy of better decisions to make at the time of anger (like smarty said), along with continued medical intervention for pandas. I think with these three approaches, with time, your child will be able to meet appropriate expectations. It is not easy, that is for sure. It takes steady, patient and persistent and consistent parenting. The tone of the house does not need to be negative- just matter of fact- if you do this, there is a consequence. etc. Good luck! Hang in there!

We didn't do IVIGs. Both girls have done pex, and later/ separate exacerbations, IV steroids. I will say, you should have someone in place for ERP. Your son may need someone to coax him to work on the ocd, but it should be easier with the immune treatment. Has he had a positive response to oral steroids previously?

We had them first in a hospital, then through Dr T, at home. They worked well for my kids, who both respond well to immune suppressing treatments. We used both times for both girls, each time it stopped the downward spiral they were in, and put them on a healing path. The recovery was not overnight, but they started improvement daily a few days out from the infusion. I will say that if you are looking to "unstick" ocd- my opinion is that excellent ERP therapy (ie USF program) is needed in conjunction with medical treatment, much of the time. Especially for particularly "stuck" ocd.

Yes- they worked very well for us.

Tanna- First exacerbation + antibiotics= all better is not the typical experience of those on this board- so you are not alone. My girls were diagnosed 4 years ago, and are doing great- but are not cured. They live 99% ocd free until an exacerbation, and those can vary in intensity and length, however since the first episode, none have been as bad- I guess since we treat more aggressively. I will say, from our experience, antibiotics alone have not done the trick, my kids have needed immune suppression in the form of pex or steroids. We also did the intensive therapy program at the Rothman Center in FL- which was invaluable in their "recovery". If your son is stuck home due to ocd- he most likely will need excellent therapy in addition medical treatment. When I say "excellent", I am referring to a program like USF, not to a local psych. Hang in there! They do get better!

I had two neuros approve melatonin for my girls. We use the minimum dosage that is effective, because we have had some bad dreams when increasing dosage. I think I would start him at 1mg, then get in bed and do something relaxing (read) for 20 minutes or so. It works well to GET my kids to sleep- if staying asleep is a problem I would look into the time release version....

Hopefully others familiar with Kaiser and or the Atlanta area will chime in, but I might as well break the not so good news- most likely you will have to travel, and pay for an appropriate doctor. Most of us on the forum travel anywhere from an hour to across the country to see a doc that will help, and most of these docs do not accept any insurance, so we pay out of pocket. IMHO Dr Beth Latimer in Bethesda MD is one of the best- but I think there is a doc or two in NC that someone on here likes. Most doctors do not believe in pandas, or if they entertain the notion, will not treat your child appropriately anyway. Hang in there

Isad- it is really hard when they are young. During a flare- with both of my kids- we see a lot of difficult behavior. I think there are several possible explanations: number one for us is ocd. OCD rarely seems to be the typical contamination fears. We have seen ocd where they have had fears, sensory issues, and intrusive thoughts. My older daughter had an intrusive thought that I loved her sister more at one point- which caused a lot of anger and behavior issues when her sibling was around. I think younger ones tend to get the just right ocd more- as we saw that a lot initially, less now. Second, I do think there is a possibility that pandas can cause irritability, or oppositional behavior that stands on its own, just like it can cause ocd, adhd, etc. Third, and for us important- there is an analogy that goes something like our kid is a glass of water. During the day (at school) there are many things that are difficult for them, each one adds a little more water to the glass (germs all over, trying to do their schoolwork perfectly, a friend touching them, the tag in their shirt itching, a small drip from the water fountain on their shirt, I could go on and on). At some point, the glass is full and then overflows- and that is your child having the temper tantrum. These are all reasons for the bad behavior- but not an excuse. I LOVE smarty's repeating technique- it works well for us (when we remember to use it!). But, I believe we need to hold our kids accountable for age appropriate behavior. They need to be told what is expected. You should help them strategize how to comply (ie when mad, go to your room and hit your bed with your pillow) and calm down. And if they misbehave, they need to have consequences. It can be a long road, but this has helped our kids. I really think the clothing sensory issues can be a MAJOR contributor here. This is kind of an ocd thing for us- in the just right dept. Buying softer clothes is not really facing the issue (though we did try it!). To me her wanting to say mean things to you, sounds like possible ocd (intrusive thoughts), and her feeling left out could also be ocd (as in when my dd felt I loved her sister more). When my dd had that issue, she was always angry at me and her sister. I started also trying to spend "special" time with her, even giving her a mom and daughter spa day. But that was not the answer. It was not until she was feeling better pandas wise, that she was able to , with great difficulty verbalize to me what she was thinking. She was 9 at the time. OCD is really, really, sneaky and mean. It takes many forms. It is NOT easy to spot until (like I do now) you start to initially assume that any change for the worse in your pandas child is ocd. And yes- if you find a good ERP therapist in NJ- let me know (we live in the Bedminster area. We went to USF two years ago- I highly suggest it for you and your dd if things do not improve.

Sounds like your hands are full! Everytime, absolutely everytime we see behavior issues pandas (and usually underlying ocd) is the issue. We have in the past tried to look for outside reasons (moving, sibling stuff, school, etc) but every time, sometimes in hindsight it has been pandas. When well from pandas, we have no behavior issues to speak of, and parenting my kids is a complete pleasure. Now, after four years of this journey, I know when parenting becomes difficult it is pandas. I would guess there is still ocd, and the behavior issues are in response. There may be ocd she is not sharing. Also, the sensory issues can cause great irritability. My one daughter has at times looked uncomfortable in her own skin- it makes her miserable (we have had major clothing issues in the past too). The young kids have no way of dealing with this, which I think is what brings about the tantrums, etc. I would strongly advise continuing with pandas medical treatment, and getting a qualified ERP therapist on board. You will get this under control.

Agree with all of the above. Rothman as a resource is invaluable for families of children with ocd. Yes- your child will need motivation- but, even if he/she does not have motivation- and the worst case is they send you home- they will be open and frank with your child that he/she will have to deal with this, and they will help your family with strategies to cope. Maybe that has to be the first step- but do not not take that step out of fear that your child won't cooperate- do not let the ocd win and control the family. Show your son you have the faith he can beat this, and you will do whatever it takes. We stayed at the busier of the RM houses and LOVED it. The staff was wonderful- but they are volunteers to run the "household" not help with children or therapy- however they were wonderfully understanding.

I think it is time to let this topic go. We have shared our thoughts. There are many sides here, no one is right, no one has the "moral high ground". We all want to help our kids, and all pandas kids, and no one here has anything but sympathy and understanding for this family either way

I am interested in this subject, and wonder if those who have done an eval or more, can elaborate on what symptoms, if any their child has displayed..... My younger dd has a little trouble keeping her place when she reads. She compensates for this by using a bookmark to slide down the lines as she reads. She is an avid reader, reading by choice for sometimes hours per day. She understands and retains what she reads. But I wonder why she cannot keep her place, and if this affects her at school when she is w/o the bookmark. She also has complained of seeing "floaters" (?) in the past. (shapes, of various colors, that are not there, floating around the room). I don't know if this is and eye symptom or a pandas symptom, or unrelated. We are seeing a pediatric eye doctor in a few weeks, as our ped recommended checking it out. Don't know if they will have much to say, but we are also being screened for uvitis (sp?). Are eye tracking problems the same, or part of convergence insufficiency? thanks!

I have been thinking about how to respond to this post, and have been wondering if I should even get involved. Thank you (as usual) to Momwithocdson, Nancy, for taking the words out of my mouth, making them a little more succinct and eloquent, and taking the time to post a well reasoned and thought out opinion. I am in total agreement with everything that you stated. I also agree with powpow- pandas is not a "brain infection" it is an autoimmune response to illness. There is a major difference, it is not semantics. I have seen my children rage- however, it is "in the moment" rage in response to ocd, for which they have been desperately sorry for- I think this is very typical of pandas. I have never seen, or frankly heard of, or seen documented, any, premeditated violent acts, even minimal, from my or other pandas kids.

BTW- This is what I will share if my child hears about this. Let's say the person planning the bombing was diabetic- would that mean his diabetes was the cause? No. OCD is not a cause of violence, it is a cause of frustration and anguish- yes- but not a cause of premeditated, large scale violence, that is something much different, and unrelated.

I am in agreement with Momwithocdson (nancy) and emma lilly- this is not pandas alone (sorry)- and I think we should shut down further public discussion linking the two. My children, pandas- with no violent thoughts- yes tantrums, but not pre meditated desires to harm anyone, would be devastated if they thought something linked them to such a violent act. it is not that I don't have compassion for this family- it is just that I do not want this type of stigma attached to ocd sufferers. They suffer enough.

I agree with LLM re IVIG, although we have two different experiences. I have two daughters with fairly classic pandas presentations, and good response to treatment. They are doing very, very well, and have not had ivig. As most of the above told you, IVIG is not a cure, but a cure for the current exacerbation- so if IVIG is not covered for you, what happens if the best case scenario happens, and this ivig works, but then down the line your child has another exacerbation? I am not against IVIG at all, but if it is not a sustainable "treatment" for your child, you might want to explore other options first. It is also not guaranteed to work. We have taken ordinary measures to look for infection, and not found any. Most of our docs agree my kids seem to have an autoimmune presentation. The do well (95 to 100%) until an exacerbation is triggered, often times by illness. This happens one to three times per year. We have found in most cases steroids have helped to turn things around and get them to eventual remission. In extreme situations we have even used IV solumedrol (high dose). Just another option to look into.

pgoody- what area of the country do you live? Maybe we could recommend a doctor you might start with.....

totally agree lynn- about RMH. My dh came for the last session. It would have been better if he was there for the last few, I think.

HI Amy- Sorry your dd is going through this. I have to agree that everytime I let myself think we may have this thing beat, it flares up to teach me who is boss. Actually, to be honest, I do not believe in a cure for pandas, at this point. As with other autoimmune diseases, MS, lupus, RA etc. there is not a cure (currently) but there is successful management for many. This is what I have come to focus on. For my girls, usually they enjoy long remissions at 95 to 100%. We do, however, see flare ups. Some small, some not so small- probably depending on the trigger, and how "healthy" they were when exposed to the trigger. We have been able to manage this disorder with no daily meds. However, if we see any appearance of symptoms we add a week of zithromax and advil (3x per day). If by the end of this week, they are still struggling, or are getting worse, we consider steroids. My older dd seems to need one short steroid burst per year, the younger one (more affected at this point) seems to need steroids two to three times. For us, the sooner we intervene with meds- the less time it takes to heal. Have you used steroids before with any success?

Philamom- All I can say is Dr R is beyond capable and wonderful! He starts somewhat slowly, and works his way up. He doesn't give them an easy out- but won't force them. My daughter did not all out refuse him- once and a while she resisted. He worked on her and she relented. He seemed to know just how to push hard, yet not cross the line, if you know what I mean. He may work on embarrassing stuff separate from the vomiting stuff first, then put them together. For example- the first thing my dd had to say to "strangers" (which are really his colleagues- so they just say- oh okay) was "throw up". Trust him to do his job- and use him as a resource- ask him how to handle any hypothetical that you fear may come up when you go home- take notes! I am jealous:) My dd has never had the vomit fear again. She does however, sometimes have fear of embarrassment. We could have worked on that more, I guess. It comes with flare ups (which for her now, seem to be very mild, thank goodness). I am thinking maybe a trip to USF next year, if I continue to see this issue. I KNOW he could knock it out in one week! Please let me know how it goes!

We stayed at the larger house RMH east. It was like a small hotel- there is a reception desk, several living rooms, a large kitchen (with actually at least 4 kitchens in it) and a large dining area. There is an outdoor patio and play area. Each bedroom has two double beds and a private bath. There are no tvs in the rooms, but there is one per floor, and two downstairs- which we found we could usually use if we wanted. It is basic (think Holiday inn?) yet very clean. The staff and volunteers are beyond wonderful and supportive. The other families as well. For our experience it was fairly quiet all day. Most families either have someone in the hospital that they spend the day with, or are there for treatment. Volunteers cooked pretty elaborate dinners for the house every day, and at that time most families would return and all eat in the dining room. I have to say, it was a wonderful experience, and in the end a great complement to the therapy: perspective. We have come to cook dinner as much as we can at our local RMH- it really is the house that love built.

T- we use melatonin also, for both girls, on and off (as needed) for about 3 years. Both of our pandas docs okayed it.

Hey Smarty, believe me I feel your pain. We are getting close to paying off #1- #2 has extreme dentist anxiety, so I think we will take a little break I do think we go to the mercedes of orthodontia- so hopefully you can get a little better of a price. Also- my high price is for a two phase program- expander, then braces- if you just need braces it will be less expensive. My older daughters teeth and bite REALLY straightened out with the expander. The braces are PURELY for vanity reasons- so if you do need a two phase approach, you may be able to do the first phase now, and wait a year or two in between. I would say most girls (not sure where the boys are on this) want the braces off by, or at least in the first year, of high school- We did palate expander in 4th grade, and braces in 7th grade- so we had a little recovery time. Theoretically #2 is getting her expander once we are done with #1- but like I said, I am not even entertaining the idea until she can sit and fully cooperate, without pre appt hysteria, for the dentist! I am pretty clear to both of them that for the most part the braces are a "luxury" item that are for vanity purposes, and that I am not going to entertain a lot of complaining AND pay a lot of money at the same time. I do indulge dd with Starbucks frappacino's when she gets her braces tightened- but i will not listen to a lot of moaning and whining I am giddy that the braces worked out that way, because I do listen to a lot of general moaning and whining We also put a down payment down, and pay monthly- which makes it a little more bearable. We are able to be reimbursed by our health savings account- so the money is pre tax, which is also helpful.