dcmom

I agree with S&S- medication HAS to become your non- negotiable. Your kids need to know you mean it. That means nothing- no food, no playing, no tv, etc until the meds are taken. After a few blowouts, she will get you are serious, and take them. And YES swallowing pills is a MUST. My dd learned at 5 because she HATED the taste of meds. She learned on probiotic pearls- teeny tiny. Good luck- it is for her own good. It does however sound like she is taking a lot so I would not add to your list for now.

So sorry I know the emotions. I would up the abx (if you can) and add five days of regular (3x day) advil dosing immediately. Then I might taper to your normal abx and one advil per day for a week. If she is not doing well at the end of these almost two weeks, I personally would do a steroid burst. When we are able to use this protocol- it works like a charm!

Hey Arial- I feel your pain If you want more details, pm me, but I am just here to say- go with your gut! We dabbled in lyme for a bit, had some things come up on some tests, but in the end lyme (and pandas) is a clinical diagnosis. That really means YOU need to follow symptoms and response to treatment for your answer. We all know that antibody tests are unreliable- especially in our kids, because their immune system is stirred up. We decided to stay the course with pandas treatment, aggressive management is what we term it. My kids have benefitted completely from this route. They are off of all antibiotics, and have been at 100% or very close for over a year. We do see flare ups, but we knock them down immediately, and we are living normal lives. I wish you luck, this will be a rough patch for you, for sure. I know you will get lots of responses that are the opposite of mine- and that is fine, not all of our kids are the same, but I can tell you, I have two strep activated kiddos (that now react to other immune challenges) who are thriving on occasional abx, occasional advil, and occasional steroids.

philamom- I guess the question is, is this temporary (like 6 mos to a year, until things get under control) or permanent? The reason I ask is, our school has a homebound ed program for ill students. My daughter was able to do this for half of her 5th grade school year, due to ocd/ pandas and school avoidance issues. While I wish we could have gotten appropriate help sooner (USF that summer fixed our problems!) our homebound program was a blessing. All of her classroom teachers came once per week, after school to tutor her. This way, she kept up with the same curriculum as her peers, and kept up relationships with teachers from the school. In sixth grade she went back to school with NO problem. Since your school is in support of you- if this is something that sounds appealing- you might see what program they have. Good luck!

Hi Kristin- Don't forget advil. Since he is sick I would definitely add 5 days of regular advil dosing to help fight inflammation.

Yes, and just to add- we did pay out of pocket to get the pex done. It was $26k. The procedure was actually approved AFTER it was done. Since the hospital is in our network, our insurance paid the "negotiated rate" of about $5k. The hospital reimbursed us about $20k- so in the end we only paid the $1k. If paying out of pocket is an option, you can continue to fight the insurance co.

determined mom- I am certainly not a psych but it would seem to me that fear of failure and perfectionism that gets in the way of normal functioning (going to school) could be ocd. For my daughter, she had a fear of vomiting. She did not have any "rituals", her ritual was avoidance. Sounds a bit like your son. Afraid of failing (look we are all afraid of failure to some extent, but we are able to forget it and move on), so he tries to avoid. The therapy for us was not necessarily just going to school and not avoiding- but was actually facing the fear. For your son the fear of failure. For us that meant saying the word vomit, writing the word vomit, watching videos and pics of people vomiting (a lot), telling strangers a story (made up) of vomiting in class, pretending to vomit in public place, etc. Yes not pleasant- but once she actually faced the fear- the avoidance and anxiety were gone. Your son needs to face the fear of failure, and realize he can handle it. (our psych said a lot of ocd is not the fear, but the fear of not being able to "handle" it). He needs to KNOW he will fail, but he will pick himself up and be okay, and he needs to know this by doing and not by telling him. Is this the type of thing your psych is working on? Again just my opinion- but we wasted 6 mos seeing local psychs that just wanted to "talk".

determined mom- Just wanted to respond to your post as well. UGH! We went through this with my older daughter- so tough. I am happy to say she is 100% now (and has been for 1.5 years)- so there is hope. She had flat out school refusal, and then refusal to all previously loved activities. We went the path of really making her get there- which I agree is important- but one thing we missed, and figured out after 6 mos of failing to make progress, is that she had to face the underlying cause of the anxiety- which was ocd. I only have girls, who I understand- are more expressive. Do you know what the real anxiety is- does he have ocd (sounds like it). My daughter would give all kinds of excuses- but we were able to uncover the ocd that caused it all (fear of vomiting). We tried to force her into school, letting her go a few hours a day and trying to work up to more. In retrospect that was extremely unhelpful without giving her the appropriate therapy for the ocd portion. We were throwing her in the fire, without giving her the tools to deal with it. Don't know if this is your case- but just wanted to throw a few things out there- hang in there.

1tiredmama- Keep up the fight. We got three denials, before on final appeal, both kids were approved for pex. Dr L was really helpful to us with this. We also enlisted the HR director at my dh's company to help in the fight. Dr L's office, DH, myself and the HR director were on the phone with the insurance company every day for over 3 weeks- but it was worth it. In the meantime- have you tried steroids? They have been a lifesaver for us (and others, I know)- especially since we started using them more creatively. Some options would include: IV solumedral (can do fairly high dose which would be anti inflammatory and immune dampening), long oral taper, once per month short burst, etc. This is something to consider for both kids. The other issue is intense therapy. We had extreme school avoidance (homebound for 6 mos) and a three week outpatient program totally took care of that. USF has a great program- covered by insurance. Lastly- if pex cannot be covered, maybe you can get IVIG covered- or bit the bullet and pay out of pocket- if Dr L thinks it is indicated. Insurance companies and the whole situation sucks. I have been able to handle pandas and all that comes with it fairly calmly- BUT when we had to fight with the insurance company while my daughter was in crisis I was really angry. I never get angry, so it was very uncomfortable and upsetting for me. Keep your chin up- many of us have been there- our family came out the other side in a great place- yours will too.

Hi Egyud- Thanks for this info. Some hospitals do have onsite pex programs (like Georgetown) while other (usually smaller) hospitals get pex service from the Red Cross. I can tell you, you are lucky- it is VERY difficult to get pex. Both of my daughters had PEX at Georgetown, and it was a miracle for them. I am wondering if you would be kind enough to pm me the name of the hospital that you went to. I live in NJ, so the info could come in handy in the future. Thanks!

Hey Iowadawn- Sometimes the right thing to do for the child, is also the hardest to do as a parent. You are responsible for keeping your son safe, and it sounds like that is what you are doing. Hopefully he will benefit from the treatment the facility offers. I know I have a family member who was sent to a long term treatment facility for drug use, and it turned his entire life around. For sure, it was not easy, but his parents went to the ends of the earth to help him. They have a great relationship with him now (he also was a teen at the time). There are some issues that are too big to be dealt with at home, or at a once per week pscyh visit. Hang in there!

Laura- I am so sorry. I know what it is to have a daughter that age, homebound. It is agonizing for them, and to watch them. We went to Rothman for exactly this type of issue, and my daughter "got over it" and hasn't had an issue since. My dd is not a lyme patient, but suffers pandas. She was not in the midst of an exacerbation at the time, but had recently had one and the ocd was stuck. What I can tell you is: you will not find a more professional and honest group of docs- if anyone can help her (and btw, they focus on helping you to parent a child with ocd, also) it will be them. I cannot tell you if, or how much the therapy will help- but cannot imagine the alternative- just not trying. I would think that they can help, even if it is in baby steps- giving your dd a little control, and you some ways to manage, could make a huge difference. It will not be easy (but by the end I did not want to leave). If you truly have concerns, I would try to talk with Dr Storch on the phone- he will be honest with you. Best of luck to you and your daughter.

ABSOLUTELY pandas/ pans can an will continue even after infection is cleared. In fact, somewhere it was studied that pandas symptoms can start up to 8 weeks after infection! For my kids, they typically are symptom free (or 97%). When they get an infection (strep, cold, flu, etc) they recover from infection normally, and then pandas symptoms appear overnight, and start to snowball. Typically they do not recover from pandas flare up unless we do some immune/ inflammation dampening (ie steroids). Of course, ongoing infection would be a major problem- but, if you have taken all reasonable steps to clear infection and test for infection, and symptoms are present, I would focus on immune treatments.

Arial- so sorry I cannot comment on a herx, however, BOTH of my daughters got strep while on augmentin PLUS zithromax. One was symptomatic (sore throat, fever, etc), the other was not. Both cultured positive. We used a course of clindamycin, which worked on the strep, but we also had to to steroids to stop the pandas symptoms. You are between a rock and a hard place, for sure- but I would definitely get him tested (strep can cause tummyaches, you know that I am sure). You have to go with your gut- but it is hard to be sure it is a herx, when your dd has (or had) strep, and this is exactly how he would have reacted previously.

Ibuprofen 3x day for 5-7 days, then once per day for another week or so.

Hi Moms- I am TOTALLY not a therapist, and everything I know I learned from a brilliant doc at USF. However, I knew good therapy when I saw it (and saw results), and then could look to our past and see therapy that was a waste of time. We didn't deal with intrusive thoughts- maybe someone like Nancy has, and can chime in- but I do know of one ERP tool that is used. The basic premise is that you do not have control over what thoughts come into your mind. Most people have some bad thoughts, but let them go. However for the ocd brain they sometimes get stuck, and can be scary or upsetting. Since you cannot control if and when these thoughts happen, you need to work on your reaction to the thoughts. The object is NOT to try to distract from the thoughts, or use relaxation techniques- this is going to make things worse. The object (which is very tough at first, and may have to be done in baby steps, with some "rewards" along the way) is to purposely THINK about the thoughts. You need them to think about, write about, talk about and even sing about the thoughts so much, that they get TIRED of the thoughts. So in the end, if the thought comes into their mind- they think "oh- so what, that boring thought", and most likely the thought will go. The think I loved about our pscyh was all of our issues were "no brainers" to him. He was unflappable, and made our issues seem minor. He also helped to normalize ocd by likening it to other diseases. Good luck!

I don't have a lot of time this morning- I just wanted to second everything LLM said. I think many of us have gone through this Initially, my dh and family were not "sold"- but a mom knows. However, a mom is also very protective and wants to shield their child from difficulty- so we tend to accommodate. This only makes things way worse, and sets up a very tough family dynamic. LLM and I say this with love, we have been there. You need to get on a road back to expecting normal, age appropriate behavior from your child. Pandas is a medical condition, yes, but we cannot accept and condone ocd and bad behavior. I strongly suggest a qualified ERP therapist, who through tough love can help you, your son and husband come to terms with these "issues", get on the same page, and have a plan. I can give you some suggestions for behavior later (that came from our therapist at USF). Also- to me it sounds like you believe your son is not 100%. Do you have a pandas doc on board? I suggest not giving up until they are 100%. This may mean: antibiotics, steroids, ivig, pex, therapy and more testing for chronic illness. PANDAS is really, really hard. In some ways it is harder when it is milder. Hang in there- the good news is he is 5- still so young, he can get over this.

I wanted to second what pow pow said about pex. It doesn't make you immunodeficient. It clears the antibodies currently in the system, but if exposed to illness, B cells have a memory- so they immediately make new antibodies- hence, no cure. I also sent my kids back to school within a week. They need about two days for the wound to heal, and they are a little tired. I kept mine out as long as they would bear- but my kiddos were eager to get back to school and I just couldn't disappoint them. I am a firm believer of not making them live in a bubble. We KNOW they will get sick, will be exposed- we cannot figure that out- what we (as pandas parents) need to figure out is how to most aggressively and efficiently fix it when this happens. Subsequent illness and exposure will most likely be a problem. But, if pex brings your child to baseline- it will be easy for you to see the start of a flare up, and jump on it. Good luck!!! pow pow- SO sorry to hear about your little one. Maybe Dr L would consider IV steroids (it worked better than oral steroids for us). Ugh. I will shoot you an email soon. Hope YOU and everyone else are well.

Ifran- It really boils down to (for us) that our local psychs were not tough enough, because they really did not "get it". So instead of the therapy for an ocd being painful, but quick- it was long, drawn out, a lot of talking, and a lot of stress. A therapist should be having them face their fears directly, and should not be swayed by any BS that the kid offers. There is not a lot of need for conversation (because we all know how the ocd kid can come up with a lot of reasons, excuses, etc). Our therapist at USF had them "doing" and not talking. It was a very no nonsense, up front, honest approach. I cannot say enough about it. When I say our local therapy was "harmful", it was because my kids had to take time off of school to go to the appt (which also made them feel "different"), we paid out of pocket (ouch), and we spent an hour discussing painful issues, and got NO or VERY LITTLE results. At USF, I am not saying it was not difficult, but we got results, which made it worth it. Also it was daily, rather than dragged out weekly for months. USF was covered by our insurance, and we stayed at the RMH- so the whole shebang (ncluding flights) cost us about the same as 5 local sessions. Good luck!

Hi Bees- I think we all feel for your situation, as we have all been there. To be honest, sometimes it is hardest when they are "mild" (mine have had times of mild symptoms and devastating symptoms). When they are incapacitated, there is no choice, you do whatever you need to. But, when things are okay- it is very scary. I am constantly feeling this to some degree (ie. I see a day or two of almost imperceptible pandas- do I jump on it? do I ride it out?) I don't think IVIG is a cure, and I think most feel that way now. So, don't go into it thinking that- or you could be totally disappointed. We have not had IVIG- so I cannot speak to that. Certainly I would at least be prepared for a worsening for some period of time after the IVIG. Whatever the reason, that does seem to be the case for many. Then, I do think it can take up to a year for things to heal and calm, so maybe you should not expect immediate results. How long has this pattern been going? Is it a definite pattern, or do you think it is due to exposure? I have not seen a pattern with my kids, other than they flare with illness, and sometimes exposure and loose teeth. I agree with LLM- that I wonder if a pattern could indicate lyme (and if you read my posts, I am not really someone who suggests that too often). How long has your son been on antibiotics? My kids are off, but we did not try to take them off until they were on zithromax full strength for two years. In general, I do think it just take some time for the immune system to calm and get to 100%. Are you seeing general, gradual, improvement when you look at things over weeks? Both of my girls had PEX- and it brought them back to baseline- which was a miracle. It has also helped us to really know what the baseline is (yes, basically perfect, all their sh#% was pandas), and we have been able to really JUMP on things if we see them going wrong. The farther from baseline, the longer to return. Maybe IVIG can do this for your son. In the end, if you are not seeing improvement, I think I would go for it. If you are seeing improvement- there may not be harm in postponing. Good luck- whatever you decide you can do so with the knowledge that you have gone to the wall for your son (and you will continue to do so), and because of that, he will be okay

My honest opinion- If you are going to USF for therapy- I would wait for all/ any appts until after that. YOU will learn SO much about ERP - you will be a much better judge of what your child needs. In retrospect, most of the therapy we have done locally (and we have used top notch, professionals that "specialize in ocd and cbt" was, at best, a waste of time, and at worst- harmful). Good luck- how long till you go to USF, and sometimes they might have recommendations in your area.

HI Linda- I am sorry you are getting this response from your school. We have had great luck, so far, with our schools. I find it helpful to go in, right off the bat, with a diagnosis letter from our neurologist, and then a letter from the psychologist stating any concerns or accomodations needed. If you haven't brought this documentation in- it is a good idea- like everyone else, I think schools are very afraid of lawsuits. I totally feel your pain about not having this disorder recognized like a physical illness (which- btw- IT IS- thank you very much). My parents have been UBER supportive, but the rest of the family- siblings and inlaws have been somewhat "absent". My girls even both were in the hospital for 4 days (seperately) for pex- no gifts, no flowers, no calls! If they were in for a surgery- you bet their room would have been filled. We could use the casseroles and well wishes just like the next family. I think, having my parents has kept me sane- they totally get it. Hang in there- we are all in the same boat, have the same experiences and feelings!

Burnell- I am thinking you are talking about the test for the ybocs score? Did you tell them at the Rothman center that this put ideas into your dd? I know that is a standard test psychs use for ocd. I hope things have improved for you and family.

Uh, for those who have older kids- is this going to be an issue in college?

Hey tpotter- NJ lays out VERY specific requirements for the medical exemption. They require a diagnosis, and the specific reason the vaccine is contraindicated by the AAP, and for how long the contraindication is allowed. The AAP allows for very little room for vaccine exemption. Our neuro wrote a letter to defer all vaccines for one year- it was not accepted. I then wrote a religious exemption- which the schools are instructed NOT to question- and I never heard a peep. I was really angry at the time, that I was forced into a situation to be dishonest- but, I have gotten over it, and will do the same again, and again.