lmkmip67

I have done Priceline in the past as well, or Hotwire, to get deals as decent as the Doubletree. We prefer the Doubletree as my son LOVES to swim, so I just make my reservation way ahead of time. Also, once we took the executive floor at the Doubletree for around $130, and breakfast was included with that. We do Dunkin or cereal and juice in the room otherwise. I think you can get a microwave as well if you want. I would ask.

I do wonder. He does have nightmares sometimes. But I just figured it was his OCD as one of his huge fears is ghosts and noises in the night, etc. I am going to lay off of it for a while and see how he does. If he has a bad night, maybe I will give him a half dose of benadryl to catch him up, but that is it. It does help him fall asleep. But if you don't get it just right, he flips out if it is given too early and he doesn't get into bed just at the right time.

I don't think we can take it anymore to help with sleep. He is ok if we can get him into bed first and timing it JUST right. But if not he becomes a raging lunatic. And he only takes 1mg. So I think we may be done with it. TOo bad as it helped him fall asleep for good long time. He is flaring this week big time, though.......does anyone else find meletonin does NOT mix with their PANDAS child?

THanks, LLM. I will keep that in mind. I do have a name pretty locally that I was going to start out with. Maybe I will call her and see what I need to do to set up an appointment. I think she was more broad than just lyme....

Very good thoughts. We did all the co-infection testing with Dr. B, and that was before IVIG, so I know IVIG was not even messing with the results. He also made us wait until right before the least IVIG to retest for the questionable bands that were indeterminate. So I think he did what he could. We will be going in January for #5 but I really am going to talk to Dr. B seriously about what avenue might be next to explore. We may try the route of an LLMD, I was seeing some improvement this time so did want to wait. Frankly the funds are disappearing to pay for an LLMD out of pocket right now until we get past the first of the year and our medical fund kicks back in. I am also going to take him to a neurologist. I need a couple other opinions in the mix so yes, I agree, we are at a fork in the road. What it appears that I have though, from all testing, is that I have a perfectly normal kid, with PANDAS. He has been on combo antibiotics too through Dr. B before the IVIG, a couple of different combos. Right now we are just on azythromicin as we saw the best response on that alone. Plus gut issues, so keeping it down to one right now is what we are doing. Maybe an LLMD is best to put on our list next anyway, just have to wait another month before I can even make the appointment due to funding. We have tapped it out for the years. :/

Thanks! I think we will rule it out just because it is the first time for this issue. But he is totally into the wet feeling and feeling like he has to wipe a lot after #2. So he does have the bathroom issues, just not the urgency until now. But I will try to work on some of that exposing him more when he is a bit calmer. he is so worked up over it now you can't reason with him.

I wish I knew.We are 4 weeks post 4th IVIG as well. We have been doing them every 8 weeks. We have seen some improvement. But not as much as I hoped after 4. There is no Lyme or other co-infections. But his OCD is ramped way up now. No tics and mood/tantrums are a bit better. I am almost wondering if he has true OCD. But I know healing takes time, I just feel like we should have seen more by now. I am honestly confused as to what to do next. I will be watching this tread and see what others say. So we have seen some small improvements, but nothing earth shattering here yet, and we head into IVIG #5 in January.....

We completed Ian's 4th IVIG 4 weeks ago. We did start to see a little bit of improvement toward the end of the 8 weeks from #3, about 30% maybe. Mood was a bit better and there were no tics. OCD was about the same. Ian came down with a little cold about a week ago. first he seemed ok, maybe a bit more moody. But this week the cold is gone and his OCD is over the top. Rituals he has never had (having to walk up and down the stairs to the front door 2 or 3 times, the bathroom frequency, being petrified of a Bloody Mary story some of this friends told him at school. (Boys will be boys and it is all fun and games unless you have OCD). We also got back the questionable bands from retesting with Igenex and he is not positive for Lyme. Dr. B is slightly perplexed. He really feels we should see more improvement by now, but he did say that some kids don't respond until even around 7..I don't know. I really like Dr. B, but I am starting to feel kind of hopeless. Ian has no co-infections going on, we tested for all of those. Negative. He clearly reacts to illness, tics increase, and then leave once the illness goes away, or we do a steroid burst, etc. He sure acts PANDAS. He is also on azythromicin. Dr. B really cautioned against chasing Lyme if it wasn't clear at all on Igenex and I have to agree. I don't want to toss more antibiotics at him unless I see a real concrete test result telling me I should be. So I am not sure what to do next. His mood has been a lot better, more agreeable, doesn't fight us as much. Once in a while he still might have an outburst, but not nearly as frequently. And I haven't seen a tic in months now when a year ago he had about 4 tics going on. So I am not sure what to make of all this. Sometimes I wonder could he just have regular old OCD? I want to see a neurologist locally and try to get some OCD support. I hope to find one that is open minded with the PANDAS treatment. But I need to do more to help him. Even if the IVIG is doing something (I can't deny a few things seem better, but after 4, it seems like we will be doing this forever) I kind of think I should do something else. Not sure what, though. I see no co-infections or Lyme. So what is next? Keep doing IVIG and hope he gets better? I toyed with the idea of homeopathy but know we can't do antibiotics at the same time. Not even sure we can do IVIG? Dr. B seems SO sure IVIG will work eventually. Really? Has any not been helped or is everyone finally helped if we just keep doing them (it is getting costly just to travel, stay in the hotel and pay the facility fee now). sigh..... Lisa

I am thinking of getting him checked for a UTI, but he is on azythromicin, so I doubt he has a UTI. Poor thing was in the bathroom just CRYING about 10 minutes ago because he felt like he had to go so badly but he couldn't. Then he finally did and was relieved. I was trying to keep him to once an hour but it is clearly stressing to him, so I think I ma just going to let him deal with it and see how it goes this week. We just 4 weeks post IVIG #4. There are no tics and no tantrums or mood issues now, but the OCD ramped way up this week with this newest symptom. If it continues, after we get him checked for an UTI, I will try the behavioral route. Thanks for the ideas!!

Ian's latest OCD issue is feeling like he has to use the bathroom all the time. I know this is common. But how do you deal with it? It is driving me nuts and using a ton of paper. I know he can't help it, but does anyone have any tips to help? I am trying to limit him to only going once an hour......

May I ask who you are seeing? We are in MA and thought of seeing a neurologist and a PANDAS friendly one would be great. You can PM me the name if you like. Thanks so much!

Ian can't get the flu shot anyway because of an egg allergy. so I don't worry about that one. But I question not getting his regular ones for school, I don't know. Well, he got the one and I will have to get the second booster in 6 months. I think that is it. He has been on Zithromax before, yes. And a combo of that and Omnicef. so we have tried a few.

Ian is on Augmentin right now 600mg twice a day. Full treatment dose, I am told. I had not heard no vaccines from Dr. B so didn't think anything of it. I do think your right about the pediatrician. I just really can't count on her being useful at all here.

Thanks! I won't make a knee jerk reaction. But even Dr. B said we should see more improvement than we have. Well, really, we haven't seen any. I have to be honest. We had a little after the first treatment, then just went downhill. He suggested retesting out inconclusive bands on Igenex so I guess that is the next step. I almost hope Ian is positive for Lyme this time. At least I would be able to say, ok, lets treat this. I feel now like I am just guessing. So the plan is to make an appointment with an LLMD, retest those bands, and go from there. We will be doing the 4th IVIG later this month. I question why, but we will do it. I was just so frustrated when I asked his pediatrician today, if he has all of these which one would you chose to medicate? She couldn't answer me. Of course I was being wise and she knew it. I refuse to medicate my kid on those drugs. There is something causing this.

She is so convinced Ian has OCD, Tourettes, ADHD, ODD, sleep disorder of some sort, and a learning disability but that isn't PANDAS. She won't say she doesn't believe in it, but I know she doesn't. I told her about the IVIG treatments and gave her a copy of all the labs, Dr. Bs notes, etc. She couldn't answer if tourettes comes and goes for months at a time and flairs with illness. She suggested therapy for the OCD, until I reminder her gently that the counselor she suggested last year told us she couldn't help us after about 6 appointments because "something" else was going. She felt something truly medical was causing this and said it didn't act like true OCD. Yet here we are a year later and Ian is not improved after a year of antibiotics and 3 IVIG treatments. Maybe I am the one that is crazy. On the Lyme front Dr. B won't give anything until we get a positive test result, so really suggests retesting. I am inclined to just do it and make an appointment with a LLMD. I guess we will go for IVIG #4 this coming month. I feel lost, honestly. Should I be pursuing an infectious disease doctor too? I guess I will start making a list of questions for Dr. B at the next IVIG appointment. I want so much to help my son, but sometimes I feel like I am spending so much money on nothing that works. Some days I will admit even I start to doubt. Why do Lyme doctors not take insurance? Why are giving out names in forums so hush hush and always done via PM? Why is it so hard to find one? If it was relevant it seems to me it should be more widely accepted. I don't know. I realize I am just frustrated today and not sure where to turn. My pediatrician is obviously not the place. She wants us to see a neurologist/psychiatrist. Not saying I am not open to that, but last time we tried we were pushed out over 6 months. I am sorry to whine, I am feeling very lost and confused. My poor kid had to get the hep vaccine today and spent the whole appointment worrying about it asking the doctor the same question over and over again. His life is ruled by fear.

I so understand what you are saying. There are days I sometimes think it would be easier to give up and just accept how he is. Not saying I don't want to help my son. I want to more than anything. But some days you just get tired.

Very interesting. We have to do food allergy testing soon here with Ian (allergic to dairy) and I am going to be asking her a lot of questions about some of this stuff too. Let us know what you find out!

Thanks, Alex. That info is helpful. I take all info into consideration as I try to navigate this next course. It is so hard. sigh... Does anyone recommend we see an infection disease doctor or anything? I am not sure how far Dr. B's powers go here in helping us when we haven't seen any improvement on this. Is he going to really focus on step only or what?

That makes sense. I am going to call an LLMD today and get the ball rolling. I contacted Dr. B's office to ask about starting a combo now and to wait on re-testing for the time being.

Ok, I think your right. I wrote to Dr. Bs office and suggested we wait on re-testing and asked to start a lyme combo. I am going to make an appointment with a local doc that was said to be an LLMD. We will start there. I assume we should continue with the IVIG, but I will see what Dr. B says....Thank you! I also will ask him about what other co-infections we should be testing for.

I had to bump this up because I realize what I need to ask now. I think I was confused a bit when I first posted. So we have our Lyme results from last January (in earlier post in this thread). Some seem to think they look lymie enough. Co-infections are talked about a lot. Dr. B talks about that, too. I assume Dr. B tested for relevant co-infections? I thought he did. Is there something else I should be looking at or asking him to test?? We did all the same tests everyone that sees him, does. I am also hearing don't bother retesting Lyme with the above results. So my thought is to check in with Dr. B and ask about skipping the lyme retest, set up an appointment with a good LLMD (I have a couple of names) and see if Dr. B would agree to starting more of a lyme combo of antibiotics in the meantime. Does that sound like the right track? I really appreciate the help in wading through this maze. I guess the only other thing is what other co-infections should we be asking he be tested for? Like I said, we did all the tests already that Dr. B orders, and nothing was found there in the original testing.

Is the Igenex mainly all components of Lyme? Or does it test some co-infections? I realize I need to understand this more. Sounds like I should also ask Dr. B about co-infections in more detail, though I believe he did a whole bunch of that testing in the beginning?? I should likely ask this over on the PANDAS board too.

We are on Augmentin right now. we were on Azith/Omnicef last year for 3 or 4 months, but we were not exploring Lyme then. He did a bit better on that. But not enough that Dr. B thought to keep him on it. I would love to test something with Dr. B while finding a LLMD.

Thanks so much! I am also wondering about asking Dr. B for a trial and then try to find an LLDM. What would a good combo be to ask about trying?

Here are his results that show anything not negative from the Igenex. I posted on the Lyme board, too but figured I would add them here since I has talked about it. Dr. B said he was negative. But those look different than negative to me, but I have no idea what any of it means, either. so....lol IgM 30 kDa + IgM 31 kDa IND IgM 39 kDa IND IgM 41 kDa ++ IgM 83-93 kDa IND IgG 18 kDa + IgG 30 kDa + IgG 31 kDa IND IgG 34 kDa IND IgG 39 kDa IND IgG 41 kDa ++