dcmom

This has come up quite a bit recently. Two pandas experts plus and ENT advised us to try the T&A. For us, one daughter had T&A prior to pandas due to sleep apnea (which started after strep throat!) The other had it done because of pandas. The one daughter did have an episode due to T&A. I am happy we had the procedures done, because both girls tonsils were noted to be very infected upon removal (something the ENTs did not see prior- two different ENTs). I am happy they will go forward with no tonsils for me to worry about harboring infection. That being said- I don't think, at this point, it has made a difference in pandas. Both have had strep and pandas episodes since. Neither had many streps prior. I would advise a T&A when the time is right, for most. If things were 90% plus, I don't think I would rock the boat. If you were considering IVIG or PEX, I think I would get it done first. If things seemed somewhat chronic- I again might consider it, due to the possibility of tonsils harboring something.

Jenbug- I am so sorry about your Mom, what a horrible, tragic loss for you and your family. I am sorry you and your son are sick, must be just making everything worse. It sounds like you have a great doc team, and you are on top of this stuff. Try to take care of yourself, and take it easy during this hard time- your son is going to be okay- believe in that!

Our insurance ultimately covered pex. We did have to appeal, but there is not that much work involved with that, just phone calls, esp if you can find a doc that will get on board. We were denied, but in the final appeal, were approved. I agree, it is stressful- but if you could find a doc to get the ball rolling, since it isn't an emergency, now might be the time to start working on it. Lots of kids are having pex at Georgetown- and I believe insurance is covering all of them. The bill for pex was $30k- but my kids were in intensive care for 4 days, plus a central line and anesthesia. Since Georgetown was in network, the "negotiated rate" was $5k. Frankly, I was furious when I realized my insurance had even bothered to fight, when they only paid $5k. If you did it outpatient- the bill would not be more, and insurance might be more likely to approve. I totally sympathize with your position, and realize as a young adult, who is sick, and planning for future, how overwhelming this must be. It was for me, but somehow as a mom you get energy and determination way beyond what you have ever had. It is really tough. I think your first step would be to find a doc who would be on your side. Many hospitals in NJ do PEX, apparently if you could find a neuro (or maybe other doc) that would write the orders, you could start the insurance approval process. You could then insist on prior approval (if you wanted to be sure it was covered). Finding the doc is the hardest and most important step. Not sure if you have any leads on that.

Pandas 16- If my kids were adults, I would seriously push them to advocate for pex. For my girls, with pandas ocd, it has been a miraculous treatment. The difficulty for a child, is it has to be done through a central line, therefore anasthesia- and those two things create all the risk. For an adult, they can do the pex outpatient, through regular IVs. It would not be painful, and not be risky. It brought both of my girls to their baseline. It would take some doing to find a doc to do this for you- but it is what I would want (and hope for, if they continue to have issues) for my girls. Just sayin

Rain- Good luck with the IVIG, I hope it brings healing for your child, and family. I am going to comment on your thoughts about reinfection, and share my perspective. We don't really do anything differently! I have two girls with pandas ocd. One, in exacerbation, has an ocd fear of sick people and getting sick. So... In my opinion, it is NOT possible to keep our kids from ever getting ill. It just really isn't. So I focus on management- having those things we need in place for when they do get sick. I am not saying I don't have the occasional freak out, on the inside- but I keep that from them. I don't want to fuel any type of ocd, or real, fear of getting sick, or living life. They have to touch doorknobs, railings, spend time on public transportation and in classrooms. We certainly teach good hygiene, but not over the top. If I know someone has had strep- then I do avoid exposure. We have done prophylactic antibiotics, and imagine we will continue- but that is it. Anyway- just thought I would share...

treating for the strep, making sure it is erradicated is essential. But for my kids, this is not enough. We consistantly have to do something to stop autoimmene reaction. I do think what Dr L says makes sense. Be sure to erradicated strep before doing a "big gun" like ivig. Both of my kids tonsils were infected- one had strep once, one twice- neither time the ENT could tell prior. There is a method to her madness

Mary- YES- the docs here at USF believe the parents need to learn to be the child's psych when done. I am here for the full three weeks, my dh will come for the last few sessions. It would have been great for him to be here the whole time- I am learning so much. The doc is compassionate, yet tough. I REALLY think daily therapy for three weeks is a great way to get started. There is just no way to tack this in one session. I do envision us back here in the future. I agree with the others, there have been times that my kids were in horrible shape. BUT- these tools can be used then- in the babiest steps you can imagine. I think it is helpful to just start giving them a sense of control. BUT- ERP/CBT is NOT a substitute for medical treatment, but I have found equally as necessary. My kids also seem to get to periods of NO symptoms, then OCD will hit like a mack truck, overnight. At that point, we do a lot of trying to calm things down- and get medical treatment. I really think the whole family needs to understand what ocd is, that it is not the child's fault, and the process to start bossing it back.

have you tried therapy? My dh has has lapses in judgement/patience like that- si I know your frustration. Seeing a therapist for your son, may also give your DH the tools to help your son, and his frustration level.

Mary- is there any possibility of doing 3 weeks in Fl? If not check the provider list on the IOCDF website, as a start.

I think specifec Dr complaints need to be kept private. Dr L is one of the best, yet she is extremely busy. I suggest being persistent, and making an appt, also getting on her cancellations list.

ERP and CBT techniques are the same, for PANDAS and non-PANDAS OCD. These are invaluable tools for kids with pandas, and should go hand-in-hand with medical treatment, IMHO. I have found it helpful to have psychs who are familiar with, or open to, pandas- because I do think there is a difference in how our kids respond (medical treatment can extremely accelerate progress, and illness can totally derail it). I also have found an equal number of inadequate psychs, as I have found ones that I like. We are in FL at USF's intensive OCD program. It is not SO intensive, frankly, and to me seems like the only way to make real progress with ocd. It is one appt per day, five days a week, for three weeks. When we have had life-disrupting ocd, once a week just hasn't cut it. I really like our psych, as he is the combination of compassionate and understanding, frank and matter of fact, funny and tough- all at the same time. He doesn't stand for any nonsense- but is very encouraging at the same time. I have realized while we have been here, that this is the beginning of my girls therapy, not the end. But, that they will be okay. The combination of aggressive medical treatment, and consistent CBT/ERP will help them to live their lives to the fullest.

I think one of the pandas docs uses Bactrim, fairly successfully, for kids with myco/ pandas.

I am sorry you are going through this. I read your link. If you have health insurance, I would consider seeing Dr Latimer in MD or Dr Bouboulis in CT. Someone has posted before about an organization that will fly you for free to the appt, if you cannot afford the tickets.

Alex- Miss you too! Hope things are ok. Both of my kids had T&A. The first one had them removed for sleep apnea, she had onset of pandas 2 years later. The younger one had hers removed due to pandas. She relapsed 1 week post op Both have had strep since T&A (older, twice- younger, once). All of this being said- I would do it again. Both of their tonsils were extremely infected when removed, which the ENT's did not see prior to extraction. Also- my kids have relapsed and remitted, but we haven't (so far, fingers crossed) had very chronic states- if we did, I might be nervous there was some bacteria smoldering in infected tonsils. I would do abx prior to, during (IV), and after surgery. I might ask the ENT about a course of clindamycin after surgery. I would also have your immunomodulating treatment of choice (steroids, ivig) on deck, if pandas increases. As with everything with this disorder- go with your gut...

In our experience, when strep is gone, autoimmunity continues. Responding quickly to that is important in our house, ERP and CBT are needed. Time is also a factor.

Hhhmm. We have dealt with lots of ocd- but not too much denial. Sure denial on the surface, but for the most part we have been able to break that down. I will say, it is VERY hard to find a good therapist. Where do you live? We are at USF now for intense treatment. I am happy with it, happy to be able to be at therapy daily, and happy it is covered by insurance. I used to wonder/ worry/ find talking about the ocd might make it worse- but the reality is- it needs to be constantly talked about. I would start by giving your daughter the workbook- what to do when your brain gets stuck- child's guide for overcoming ocd- after you read it. For me, and my kids, it was THE BEST thing we have done. It is the clearest, easiest description of how to fight ocd. I would start by NOT pushing too hard. Explain pandas- that it is not her fault, that an illness has caused this, but that luckily with medical treatment, and some hard work, SHE can get her life back, and live it the way SHE wants. As you go through this, you might tell her: this (therapy, fighting the ocd) has to be done. It can be done now (and she can get it over with), it can be done next week, it can be done next year, or it can be done when she is 20 (and it will be much harder then). Reassure her that you fight the ocd in BABY steps, and that you will be with her every step of the way. Meg's Mom is a great resource- research her posts. Hopefully she will respond....

My suggestion would be to put her on clindamycin if possible. My girls both had asymptomatic strep at initial onset, but thankfully we did have them cultured. Both have maintained low titers. LOW TITERS ARE MEANINGLESS. My kiddos both had strep for the first time in 2 years in April (btw one was on Augmentin AND zithromax at the time). We did 2 weeks of clindamycin- it knocked the strep out. We followed up with steroids to stop the autoimmune reaction. They are well now, although NOT perfect, but trending better. This april, the younger one DID have typical strep symptoms- the older one only had minor fatigue and an increase in pandas issues- both positive for strep. Good luck- maybe you have found the issue, and can start the healing process (it does take time, look at weekly trends).

I am glad the post was helpful- I am always afraid that I come off kinda tough- but this is serious stuff, and I don't like to tip toe around the issues While I DO think early intervention is best- my daughter was treated within two months of pandas onset- and she still has the disorder- she is not cured. I am no longer focused on a "cure", but on long remissions, how to get them, and keep them. So I do hate to see parents beat themselves up about not getting to pandas treatment immediately. The lyme doc I saw only treats age 9 and up- so she will be no good to you Have you tried full strength abx for longer than a month? Have you and Dr L considered a steroid burst? I have a TON of faith in Dr L- she has SAVED my kids, I strongly consider her thoughts and opinions, but then my husband and I do make our own decisions. None of the pandas docs have all of the answers- and I think Dr L would be the first to tell you this- but she sees TONS of kids, and really gets how affected they are, and is TOTALLY willing to think outside of the box. You are on the right track. You will find what works for your dd, you will see a pattern, you will get this under control (relatively speaking)

Hi eljomom- I can hear the frustration in your post. We can ALL understand this: pandas, lyme, whatever...it is hard to see your child suffer. I will share some of my opinions with you, for what it's worth.... First of all, Dr L IS a really compassionate doc. She GETS that these kids suffer. How is your daughter? I mean, IVIG IS a procedure that is expensive with some risk. So, maybe Dr L feels your daughter isn't really suffering with the tics, so you have a little time to try to figure it out with less aggressive means first. I don't know- this may not be the situation. But- since we have started this pandas journey with both of my girls, our number one priority has been making sure they find joy in their day. They have been at times, completely incapacitated by ocd: not able to leave the house, major depression, hiding under desks or in tents, hours in the bathroom screaming and crying, etc. So- I think the number one thing is- Is your daughter happy? Is she healthy? Is she able to DO everything she wants to? If the answer to these questions is yes- then I think you can try to calm down and look at things methodically. (this is very hard to do in a crisis) If this is not the case, then I would strongly advocate for aggressive treatment- I am a big believer in Pex, Ivig and steroids. It is SO hard to evaluate meds and treatments sometimes, because pandas evolves. From what I have seen it has an overnight onset, then a downhill trend. When healing the trend is improving. If you try meds on one of these trends, you may attribute the worsening or improving of the natural pandas trend to the meds- so it is important to remember that. I have also found it is key, for more impartiality and sanity, to evaluate on a weekly basis, rather than a daily basis. For my kiddos, antibiotics no longer help the exacerbations, for the most part. PANDAS, by Swedo's definition, is an autoimmune disorder. My kids have fairly clearly followed this pattern. Many things can trigger an episode when you have an autoimmune disorder (think PANDAS, Lupus, MS, RA, etc). The docs just DO NOT have this stuff figured out yet. We have seen different immune challenges cause issues: loose baby teeth, minor colds, strep, H1N1, etc. We have found sometimes the girls have minor flare ups (loose teeth do this, exposure also), which mainly consist of emotional lability and some minor oppositional behavior). These minor flare ups seem to take care of themselves, lasting about a week. I do now, increase the abx and administer some advil during these flare ups. They have also both had three more severe episodes (actually my younger one 4- but one of them stopped completely within a few days with oral steroids). When they have these severe episodes (they have all been sudden onset, and it is pretty clear from the start what is going on) they DO need an immune modulating treatment. PEX worked miraculously and completely, IV steroids have also worked, although not as completely. But- I have no doubt without these immune modulating treatments, my kids would spend a long time in ######. My biggest challenge is how to get these treatments asap. We did explore the lyme route. Both girls were negative on standard testing, and positive on Igenex as read by some llmds. We saw an llmd, and treated them with a lyme protocol for a few months- and frankly, I could have been giving them water. No change, no herx, no improvement etc. We decided to abandon lyme treatement when we were: sick of giving them tons of meds and some supplements without being convinced they had chronic lyme, when we saw no improvement, when they both got strep on these meds, and when we consulted a very smart lyme doc who is more conservative than many llmds. I know many on the lyme board will read this and cringe, and I am sorry. I am not professing to KNOW that my kids don't have lyme, or weren't exposed to lyme, but we (decided this early on also) go with what works. Lyme treatment did not work, immunomodulation has been a lifesaver. So- this in uncharted territory. The person who tells you they KNOW what the solution is, is the most scary. You need to follow your gut, check all possibilities out, and go with what helps your child.

Hi Buster!! I voted for the relapsing and remitting one time- but I have two pandas girls that would fit into that category so far (although we are still working on getting to baseline after most recent exacerbation from strep in April). Honestly, the way they got to baseline previously was PEX (we still haven't tried IVIG).

Amazing enjoy her! Your post made my day!

Beesknees- while I understand the anger, don't let it consume you: my daughter was diagnosed with pandas (and strep) within 2 mos of onset (age 5), she went on daily treatment antibiotics from that point on, it was not a cure while I hold out hope symptoms will subside with age, I am REALLY focusing on aggressive "management" to maximize joy and quality of life....

Thanks everyone! I need to hear this We are denying the DTAP booster for my dd right now. NJ requires this- there is NO medical exemption that would apply (you basically need to be on death's door) even with several doctors notes, and there is NO philosophical exemption. I had to write a religious exemption letter- which is lovely since I am agnostic They used to NOT be able to even ask you anything- just take the letter- but the tide in NJ is so pro vaccine- things are changing. (I am a vegetarian, and only give the kids organic animal products- so I did find out most vaccines contain animal products- so there is my line of defense- I guess I need to become a Buddhist!) I am mailing the letter this week. Both of my kids developed pandas at the same time, post strep- within three months of their first and last (insert profanity here) flu mist. (they had both had strep 2 x in their life prior, with no incident).

PS- Arial- my younger came down with incapacitating pandas. In hindsight, at the same time, her older sister did as well. BUT since younger was so bad, and older was functional- we missed it for a while. Then we realized it an treated her, those mild issues went away. She did eventually have an incapacitating onset So I think it is totally possible to have a mild onset.... I am a BIG believer that aggressive treatment helps for each episode..... Sorry beyond words about your daughter. The ONLY silver lining I can see about having two (and I would not wish it on anyone)- is that they now (and in the future) have a built in support group, and don't have to feel so alone....

We have had the same issues as the others. Two girls, both have minor flares with loose teeth. Usually increased emotional lability- not much ocd. It usually gets better a day or two after tooth pops out. One time older dd lost 4 teeth (molars) in a month, and we did a steroid burst because she couldn't get out of the flare up. Now if they have a cranky day- I ask about a loose tooth If they do have a loose tooth- I tell them to wiggle it a lot, and try to give advil until it comes out (however I am not a fan of more than 5 days of advil). The flares have been on the minor side, and they have rebounded- which is the good news. I am hoping my older is almost done losing teeth? Younger has quite a ways to go....