lmkmip67

Hi Linda, we will see you tomorrow! I am sorry to hear your son isn't doing as well. I look forward to meeting you and your husband, good luck! Good luck, Bulldog24!

We are taking a break from the IVIG, but I do want to keep him on augmentin for a while. We ran out a couple of weeks ago and I wanted to see if stopping them did anything. His OCD seemed to get a bit worse, (though that could be for any number of reasons). I do want to keep him on it for a while. He takes the chewable version. But I am curious if anyone knows what dosage he should be on at 60 pounds? I guess Dr. B would know, but I wonder what the norm is?

This will likely be our last one, so figured I would see who will be there, if anyone. I love meeting other families on here and comparing notes, hoping to hear good news for everyone doing the treatments. it is kind of bittersweet to go down. I don't mind going. But not excited either. Not like I was in the beginning, hoping this was IT. I am kind of excited to close this phase and keep peeling away that onion, getting closer and closer to the answers that will help my bug. Trying to remain positive and enjoy the gorgeous weather. I think we may go see the shore afterwards if Ian doesn't want to swim. Lisa

No Bill, that is very helpful, so thank you. Hearing the experiences of others is always helpful. I do agree, that the tests are not always telling. that is why I am not discounting Lyme and plan on seeking input on it. We just need a break for a month or so to enjoy our Spring break vacation and kind of collect ourselves. Then in May I think I will make an appointment with the LLMD and go from there. I took him off antibiotics for a couple of weeks to give him a break and his OCD did seem to get a bit worse. But heck, it did last time before treatment too and he was still on the meds. So who knows. I think whenever he seems to flare I look for WHY now. It is a guessing game.

Thanks! I sometimes feel like I am failing (don't we all at some point?) But I know I am not. Just trying to find answers. Ian is very functional. But he struggles with huge OCD stuff, ADHD, ODD, etc. He has to things twice, repeat things, confess things, has a touching compulsion, huge fears (can't use the bathroom at school, etc), separation anxiety at night, wiping OCD in the bathroom, perfection compulsion in handwriting (has to erase over and over and over) and it goes on and on. So yes, he is functioning but he struggles daily with his OCD. That has not gotten any better at all with IVIG, and actually he is worse than last year at this time with OCD stuff. Tics are the only thing that I don't currently see.

Thanks, LLM. I am not actually feeling like it is a low point. Maybe a new start. You hit the nail on the head though. I think you have to work through the different issues to find the right answer. Who knows, maybe it is Lyme and the tests just aren't showing it. We will explore that soon. It is like you said though, it has been a long winter and I think we are all just tired. I am lucky, Ian goes to school full time, is in an intense hockey program (his choice, he loves it), play soccer and has lots of friends. His tics have subsided for almost a year now. I am kind of looking forward to trying out the next route to see if we can find something to help. I do hope the psych meds help so he can have some calm waters for a while. And we will be working on the therapy a lot, too. So not giving up, just taking a little slower road and exploring our options. You might be right though, winter is long and it can really wear on people. I will keep updating as we take our next path in hopes it helps someone.

I won't go through Ian's whole story. But we are heading into IVIG #6 this coming week. We haven't seen results from it so are taking a break after this one. I am not sure what Dr. B will say, but I know we all need a break from the trips and needles. I plan on asking to keep him on antibiotics for now and we are doing therapy as well as starting some psych meds to try and calm the OCD. I may be looking into Lyme down the road, though as of now his tests and retests were all negative. I just feel it is time for the next phase. Maybe we will see some healing from the IVIG, I don't know. I read about some that get one or two, but then see healing months and years down the road...but not sure. I need to get him to a more stable place and have to look for other means to do that now. Lisa

Nope. Not with 3 boys, lol. I only have 1, an 8 year old. lol What time were you there? We were there at 10 a.m. Oh, we had an appointment at 11am, but were there at about 10:30. Must have just missed you. Yep, we went in about 10:20 and left likely when you were in. How funny! May I ask what you are seeing Dr. W for? PM me if you want. If I am being nosy, tell me to shhh!

Nope. Not with 3 boys, lol. I only have 1, an 8 year old. lol What time were you there? We were there at 10 a.m.

Yep, we have tested for Lyme and other tic born illness. Nothing. we have done HD IVIG, 5 times. We have tried single and double antibiotics a few times, different combos. He had tics last summer, which have left and not come back since. Maybe a day of one tic once in a great while with illness, but not in over 8 months. The house was all tested for strep, and only I was high, and treated to clear it. that was over a year ago. We have all been tested again since, nothing. He has his tonsils still, but he never seems to get sick or have infections. The random cold once or twice a year. I will admit, all signs seem to point to nothing else. I am not giving up on certain avenues, I just have to get my kid stable for a bit here now. I may look further into Lyme, though the tests (Igenex, done twice) were all negative. Dr. B is quite confused as well, believe me. We have used Zythromax, augmentin, some drug with a B, steroid bursts, etc. I sometimes wonder if we are barking up the wrong tree with the PANDAS ideas...Even though tics and OCD exploded after a strep infection two years ago..... Dr. Swedo (at a conf) said if there is no response to IVIG, test for Lyme. What about other tick borne diseases? I assume it was HD IVIG? Also, have siblings/family members been tested for strep ? Cultures? Rising titers? Are tonsils out? What abs have you done? I just wonder if there is an infection hiding our somewhere.... What do you mean "the tics have not come back?". So he had tics, and now they are gone?

We finally had our appointment at CHildren's today in Waltham with a neurologist. I think it went really well. A little history on Ian, he is 8. He presented as classic PANDAS. But after a year of antibiotics, and 5 IVIGs without much, if any improvement, we are looking in other directions. Lyme tests are all negative. We may look there too, anyway. But this dr appointment was strictly to try and find some other avenue to help him with his OCD. The neurologist was good. He knows all about PANDAS. He doesn't treat it, but then I wasn't there for that. I wouldn't suggest him to someone for treatment of PANDAS. He knew all about Swedo and the studies, even other research they are doing with new discoveries. Anyway, he took lots of time with us, never poo pooed the idea of PANDAS. He did say that we should have seen improvement by now from 5 IVIGs. He thought IVIG a good treatment regime for PANDAS plus other autoimmune issues. SO I felt at least he wasn't going to cut me off, or disagree with us. I felt like he listened. In the end, we are not seeing success with PANDAS treatment and I still feel we need to help my son. So we are going to try a low dose of an SSRI along with this OCD therapy, so at least get him back to baseline. We have another IVIG scheduled, but after that we are going to take a break. I don't know if we will keep him on antibiotics or not. We may take a break from those too, maybe leave him on a couple of months after this next IVIG. Once we have some down time from the IVIG appointments I may check in with a Lyme specialist and just see what they think. I am also considering homeopathy at this point. I can recommend this neurologist if you want a good neurologist. But again I can't say he treats PANDAS as he doesn't. I don't need him to, as we see Dr. B anyway. I do, however, need others involved in my son's care so we can get him over this OCD hump and get him laughing and being a normal 8 year old again. The tics still have not come back, and I hope they will stay at bay. Lisa

Thanks, I got it! I would love to do one of those programs. I guess we will likely wait for this other therapist and see how she is. Maybe we can do one of those programs in the near future....

I am taking Ian to a psychologist that treats OCD in children and adults. We have went to 6 appointments so far. She does seem to know a lot about OCD. But I am questioning the treatment. It seems totally based on CBT, which is helpful to an extent. But Ian doesn't seem to be able to really utilize it very well. He is 8, so still young. Some of the things she has him do seem right out of the When My Brain Gets Stuck book, which we have. And I know they are good techniques. She has had him name his OCD. But beyond that, she tells him to talk back to the OCD, and they role play a little bit. A typical appointment is suppose to be 45 minutes. But so far all she does is ask how things went the past week, talk about the "fear thermometer" and ask what he wants to work on this week. This all takes about 15 minutes, then we kind of sit there while Ian asks her every question under the sun, tosses balls into the air (because he is an antsy 8 year old boy) and she keeps seeming to try to get him to role play about his OCD. I don't know. I never feel like we really leave there with Ian any more invested in this, or anything new, or like we have really made any progress. I know it is a slow road anyway, and we help remind him at home and put up limitations on behavior, etc. But it doesn't seem like she is doing anything I didn't already know, or couldn't do myself. She hasn't really come up with any more tools or methods to help or for him to try, in 6 sessions. We have a neurologist appointment in two days finally, and she is pushing for him to be on medication so the tools she is trying to teach him will work better. Really? I am not pulling him yet, as we are on a waiting list for another OCD specialist (6 month waiting list, I have a feeling she is very good). This one had lots of open slots, so I wonder if there is a reason. My gut just tells me there should be more meat to the sessions. I don't know. So I figured I would ask here and see if this sounds like a typical session with an OCD therapist for those that do go? Or are we just wasting out time and copays? I figured I will stay here until we try the other psychologist, at least we are trying something, I guess. Thoughts? I may also ask on the OCD forum, but since we are dealing with PANDAS, I thought this might be a better place since these kids can flare and such. Thanks! Lisa

I would be interested, too. We are seeing someone right now, but I am not sure how good she really is. We have seen her for 5 sessions and about the only thing she has tried to teach my son is to talk back to the OCD. I know it is a slow process, but it just seems there should be more to it than talking back to the OCD. She seems a bit wishy washy.

That is so great! I am one of those with my 8 year old, wondering if it is every going to work. He has had 5 IVIGs. When did you start to see real improvement that lasted? Did the IVIGs help?

Thank you!> I won't ever give up. Just get really confused some day. lol Ian has an infection component too because he flares when exposed to strep and other illnesses. Especially when he gets sick, it is so pronounced how much worse the OCD gets. I hope you continue to see improvement! I hope we see some soon!

Well, he had a strep infection in March of '10 and started a vocal tic about two weeks later that never went away. It progressed to about 4 more tics over the summer and bad OCD, ODD, etc. He did show some improvement initially on antibiotics, and was amazing on a steroid taper. But just not enough improvement has been seen via antibiotics and IVIG. His tics are gone, however. Just the OCD seems to get worse. It has stabilized this past month, but is not improving either. Does he have PANDAS? I guess I don't have proof, it is a clinical diagnosis. But it sure seems to fit the profile pretty well.

Yep, it sounds like you are right. WE always watch that so close when we are there. lol

Ok, I think he is at 2.0 DH just got home and said he heard that. I never bothered to ask about the dosage or look at the bag. lol usually I am dealing with a very grumpy 8 year old during treatments so we just do our best to get through. His weight is 58 pounds.

Hmm, now I am confused. I always watch the number we have to get do in any given day we are there. I wonder how that translates to 1.5 or 2.0. Hmmm....He was getting the typical Dr. B dose for an 8 year old boy, whatever that means...I never asked in g/kms.

Hmm, not sure. The first day he has to get up to 200 and the second day up to 150, usually. But this time it was 200 and then 350. How that is measured, I am not sure. I was quite sure Dr. B does high dose, though.

High dose, he just put it even higher this time. I guess he would have been at 3.5 before, if counting the whole two days? I get confused on the dosage amount, I haven't spent time researching it a lot.

Ian's dose was way upped today and I am wondering if there is anything else I should look out for? He usually handles it pretty well. Maybe a slight headache, not much. And a slight upset tummy maybe after day 1. But that is usually it. They upped from 150 the second day to 350. So instead of 350 total he got 550. Thanks!

I can totally understand how hard that would be. I am hoping we actually find something underlying, because then that will give us some answers. I am glad to hear things are better than they were! I hope it keeps improving for your kids!!

That was them! Thank you for the kind words! The precious young man can drive me nuts, but I sure missed them while they were gone. I usually go, but after 5 of them, we are going to have to divide and conquer with both of us working. Next time it may likely be just me. lol Hubby mentioned he really enjoyed talking to a few other parents there this week. I know it really, really helps him cope with all of this, so thank you for chatting with him. I guess time will tell. They gave him a larger dose (he usually gets 150 the last day and they upped it to 350). So we shall see. I hope you are seeing improvement from it!!