lmkmip67

I think there may be a couple of integrated doctors or homeopathic doctors, but I haven't found a mainstream MD locally that treats. I will check the list again, but we have been doing this for 2 years, and no one locally has popped up yet that I have seen. Have you ever done IV steroids. Both I am my son have PANDAS and I can tell you that first hand, IVIG did NOT help me anywhere near the extent of steroids. Not IV steroids, but we have done many rounds of oral steroids. It helps, but then he flairs again after a couple of weeks off. And long term steroid can have negative effects. oh no not a taper. We're talking 3-5 grams pulsed over 3-5 days. Essentially STOPS the inflammatory cascade in its nasty little tracks. Well, if I can ever talk to Dr. B again I will ask about it. But I am not sure that is a treatment protocol he uses and we have only seen him for PANDAS. That is part of my frustration though, I can't even just ask him a question at this point unless I pay hundreds for a phone consult or wait 3 months. I am going to see if we can get the blood work done here maybe and then try to get in with him when we can, I guess. : /

I think there may be a couple of integrated doctors or homeopathic doctors, but I haven't found a mainstream MD locally that treats. I will check the list again, but we have been doing this for 2 years, and no one locally has popped up yet that I have seen. Have you ever done IV steroids. Both I am my son have PANDAS and I can tell you that first hand, IVIG did NOT help me anywhere near the extent of steroids. Not IV steroids, but we have done many rounds of oral steroids. It helps, but then he flairs again after a couple of weeks off. And long term steroid can have negative effects.

I think there may be a couple of integrated doctors or homeopathic doctors, but I haven't found a mainstream MD locally that treats. I will check the list again, but we have been doing this for 2 years, and no one locally has popped up yet that I have seen.

now what. Some may remember that we canceled my son's last IVIG with Dr. B last week. It wasn't helping after 8 treatments and I just couldn't see doing 9 for nothing. I took the week off from even calling for a follow up just because we needed to not worry about it for a week. So now I am trying to call for a follow up appointment with Dr. B and the office seems to be booked for months. This isn't a judgement on the office or Dr. B at all. I am sure they are just overflowing with patients. I figured we would have to see Dr. B to follow up, but we can't even get in, so I guess we will have to see the PA. I am fine with that if it is a check up or routine follow up, but it seems like we really need to figure a whole new path going forward and just not sure if she will be able to help with that or not. I guess I could make a phone consult appointment, but they want Ian to go in for blood work every few weeks now or they won't refill the script for antibiotics. I can maybe do the blood work here. I switched my insurance a couple of years ago so the IVIG and Dr. B would be covered. But phone consults aren't covered. I realize many pay lots out of pocket for treatment. But I am just a little frustrated that I can't go down and be seen before 3 months. We have only talked to Dr. B during IVIGs for the past 1 1/2 years. I did not realize the office has become so busy or there was a PA now. I do understand it. But feel sort of stuck now. I am waiting for one of the receptionists to call me back with an idea of who I can see when. I feel like I need more than 15 minutes to talk to Dr. B, but paying hundreds for a phone consults won't fit in our budget either. I am willing to drive, but now the wait is as long as it seemed for other docs way back when we started. I so wish someone in Boston treated PANDA. I am sorry this is affecting so many that Dr. B is so busy now. thankful he is there to help them, but there has to be more doctors treating this soon. I am not venting about Dr. B, not at all. i think he is great and very caring. I just the the treatment for this is getting harder, not easier, now that he is getting even busier. I feel like if we could get treatment closer to home it would just be easier to be in contact with a doctor. I guess we will see.

We just got home from seeing a new therapist, a child psychologist that only works with children. I am very impressed. She heads up a pediatric behavioral health place pretty near us, actually. We tried another therapist earlier in the year, and she did not work out for us. I learned today, it was likely just personality. She wasn't structured enough for Ian. This therapist is much more structured. She has a 10 month waiting list, but our name finally came up. She also confirmed we should have made a lot more progress than we have been making. It is so very difficult to find GOOD child psychologists in this area (and we are near Boston, a medical hub, seems wrong). And even harder to find ones that specialize in OCD. But we found one! And I just feel SO good about her. She even has a son the same age as Ian (so at least she understands boys, lol). It just seems right, and I think this will be a wonderful fit for Ian and for us. I know it is hard to always tell from the first visit. But I trust my gut and this feels like a great fit, and I am SO relieved. She is interested in his IEP testing, wants to be in touch with his pediatrician, and Dr. B, and the Neurologist we see. I just left there with the feeling that she has got this, you know? I know it is a lot of work for Ian and even more for us, but finally, it feels we are doing a few positive things for once in this up hill battle. She also knows all about PANDAS, and does believe in it. Is not only pro medication (though Ian is on prozac now)but really seems to know her stuff and knows what we are dealing with, too. Now to find a new pediatrician and I think we will be on a much better track. So relieved. Lisa

Sounds like a couple are interested. Lets see if we can find a couple more and then try to find a time and place.

Ian does this when he has an ear infection and he used to get those very frequently until he has been on the antibiotics. It could be a PANDAS thing, but you might want to get his ears checked, or even sinuses for some infection that might be hiding up in there. I also get clogged ears when my allergies are acting up.

I have not thought about a different doctor, no. I suppose it is an idea. I guess I just thought we were with one of the best (and I think we are) but your right, sometimes different opinions can be helpful, too.

Well, I canceled it. It does feel like the right decision. No call from Dr. B or the PA, though. I was told I will either need to make an appointment for a phone consult or office visit. I will likely make an office visit appointment. I was kind of surprised one of them wouldn't call at least...but I know they are busy.

Oops sorry! It should have room now.

Thanks for your reply, Linda! I am sorry you are still searching and struggling too. Poor Hunter. I hope he starts the upward climb again soon. I also agree with you. There is something else going on for us as well. Are you still seeing dr. B? or will you stay down there with the other doctor? I am seriously thinking about checking out the integrative doctor up here that treats PANDAS too. My feeling is they dig a bit differently for different things. I just want to take a breather for a couple of months and catch up breath. Then start digging again. Of course if Ian gets worse before that, I will certainly take him somewhere or decide another path at that point. My hope for the prozac is that it just helps us get a bit stable and get something out of therapy so he can start building some skills for the OCD. Please tell Steve that Rich says hi too and still have him email Rich if he ever wants to chat to another dad about it. It is a rocky road, for sure. I am sure we will both update on the board as well, but here is hoping for improvement for both of our boys! Take care, Lisa

That is the confusing thing is that we can't find any underlying issues. He thought the vaccine from the fall may have set him back so suggested 4 more, of which we have done 3. But again, none of them have done anything that we can see. So doing the 4th seems useless to me at this point. I really want to talk to him too about everything that has been tested for. I believe we have tested for all of the co-infections he usually tests for. I have the big stack of results around here somewhere. I do know that everything he has tested for so far, has tested normal, or negative. :-/ I admit to being overwhelmed by all the tests and co-infections. But I am sure he is being very thorough.

Thanks! It means a lot to have the support here. I know IVIG has helped so many. I wish it would have helped us, too. But at this point, it doesn't seem to be the answer. we will keep looking for what works, that is for sure.

I talked to DH on the phone on his way home. We are going to cancel it. I will call the office first thing in the morning. I hope they can fill the slot with someone that it will help. I feel badly waiting so late, but this disorder makes me question so much, so often. It is hard to know what is right and what isn't. We will see what Dr. B suggests next.

I will call first thing in the morning for sure. I would hope I could talk to one of them, but if not, we will make an appointment as soon as they have an opening and drive down. no, he never really had any improvement. He had 4, without seeing much. Dr. B said, sometimes it takes up to 7. Ian did have a vaccine last fall (I had no clue at the time we weren't suppose to do that), and Dr. B thought that was maybe getting in the way. But he already had 4 or 5 at that point with no improvement. So he suggested 4 more treatments. This one would be the 4th of that series, the 9th in total. I have been really questioning this one for the past two weeks, but had that number 4 in my mind, plus the fact I guess I thought I should listen to the doctor. ALl along I have taken what he has said and we have done it. I know he is trying to help Ian. But it just isn't working. We are seeing a new therapist next week, one that is suppose to be good. Thank you! I tend to agree with you. We really have not seen any improvement, no. He did get worse after the 1st one, and got better from the worsening. But he never improved above how he was before the first IVIG. And after that he didn't even really get worse, nothing really happened. He has had IVIG treatments now for 1 1/2 years almost, and I should think we should see something. I wonder sometimes about seeing a lyme doctor. But with the Igenex being negative, (twice) is that worth it? there are days I would wonder if this is PANDAS if he had not flared right after a strep infection. I am not giving up on looking for an answer. I am planning on just what you said. Taking some time on the prozac, with therapy, and catch our breath. Then figure the next step. I am happy to keep him on antibiotics for now. Or if we see him get even worse, then maybe we will know it was doing something, you know? So many questions, and so few answers. No, I have not heard of her. Hmm. I will definitely look into her, thank you! There is also a doctor up her I have on my list to see if lyme was an issue. She is now treating PANDAS but I think she is more of an integrative doctor, not the traditional IVIG route doctor. She is a possibility too. I am even thinking of homeopathy at some point. so we have options.

I got the call to confirm the IVIG for Monday for Ian. It would be his 9th. We have seen no improvement from any of them. This was going to be the last and we were going to reevaluate anyway. But I am questing why we are even doing the last one, to be honest. We have to travel, over night and it comes to quite a few hundred dollars, days off of work, IVing the kid for hours each day and giving him tons of meds. I don't know. My gut is telling me to not go through with it. Hubby doesn't disagree, so we are going to talk more about it tonight. I feel like it might be just as useful to make an appointment to see Dr. B and just talk then then go through this all again for no reason. I don't know though, I know Dr. B would suggest this one last one, but my question is WHY? we have seen no improvement. We have seen more improvement from the prozac than anything else. I can vouch it is that, too. we took him off of that for a couple of weeks because of a rash (ended up being fifths disease) and his OCD started to worsen again. Then once we put him back on, it again improved. I know prozac isn't a long term answer, we are doing therapy, too. But as far as sinking over $1000 into this last treatment, when it seems for nothing and was going to be last, I just don't know. I can't get excited about it and am thinking of canceling, and talking to Dr. B about what the next course of action is. What would you do? Would you go through with it? It isn't about the money IF it is helping. But after 9, we have seen nothing. Lisa

Well, there are a couple of thoughts on it. We had this question with our son, Ian. he is now 9. I think it really depends on the child and the issues they are dealing with. He is on an IEP. We determined that his issues would not be helped by staying back (inability to focus, worrying with the OCD, etc). And no matter what level of information he was learning, his issues would get in the way, so we decided to push him on through. I am glad that we did. with the help from his IEP, he is at grade level in everything now, but still does need help because of his focus issues. On the other hand, I don't think you can ever go wrong repeating a grade if it is a question. But you might regret pushing her through. It worked out ok for us, but Ian would still be fine if we did hold him back. Does that make any sense?I don't think you would regret holding her back, but you might regret pushing her through. It may work out if you send her on, but it could make it harder. If you can, you might want to sit down with the special ed teacher and find out what her thoughts on the matter are. Saying all this we did hold my daughter back years ago in 3rd grade and it was the best thing we did. She is not PANDAS, but she had a learning disability. She caught up, and is now in college. For her it was the right decision. No one can answer for you. But I would talk to people that work with your daughter at the school. Good luck!

I know there are a couple of different groups meeting in parts of the state, but was wondering if there are any others in the metrowest MA area that would be interested in a get together? I can't often travel to the other locals because of the drive time and childcare, with hubby's schedule, etc. If so, what day of the week works well for people? A weekend? Or a week night? I thought I would ask as I would love to meet up with a few other parents but can't make the other meetings. Lisa

Thanks, ladies. I totally see that as they get older and into middle school how it could be more of an issue. One thing Ian does is ask a ton of questions. His friends brush it off now, but I could see that it would get irritating in a few years. I guess we just take it one year at a time and try to get him to a stable place, which we are doing anyway. He is very social though, and never has had trouble making friends. He is also into a ton of sports, and plays hockey 4 to 5 days a week 8 months out of the year, so some social interaction is built in there. I do hope he continues that because I think that is good for him.

Thanks, Mimi. I got your reply on the other thread too. I may be able to give you a call this next week once Ian is in camp. He bugs me ALL the time when he is home. lol. I do think we need more resources for children with OCD in the Boston area for sure. That is what prompted me to start back on my MA in counseling psych to help kids with OCD. I agree that during a flair would not be the best time. That is why I am putting an intensive program on hold for now, but keeping it on the back burner. Ian isn't too bad but we just increased his Prozac, and he is having his last IVIG in two weeks (we haven't seen much improvement with that, so taking a break). I want to see how some of that settles and see if we can get him maybe up another 20% to 75% at least, then I think it could really benefit him. We live in the metrowest area, so anything in Boston is really difficult to get to with school and sports. We are on a waiting list with Dr. Guertin. I picked our last therapist off a list on the OCD foundation web site. But she just wasn't a great fit for Ian. He is too busy, always moving around, can't really focus well, etc. She really didn't take control of the situation and I always felt like we were just trying to fill 45 minutes when we were there. She may work well for a more calm girl, but Ian just didn't gain much from it, and we tried for 5 months. It is VERY hard to find therapists that work with kids with OCD out here.

Thanks, Mimi. I got your reply on the other thread too. I may be able to give you a call this next week once Ian is in camp. He bugs me ALL the time when he is home. lol. I do think we need more resources for children with OCD in the Boston area for sure. That is what prompted me to start back on my MA in counseling psych to help kids with OCD. I agree that during a flair would not be the best time. That is why I am putting an intensive program on hold for now, but keeping it on the back burner. Ian isn't too bad but we just increased his Prozac, and he is having his last IVIG in two weeks (we haven't seen much improvement with that, so taking a break). I want to see how some of that settles and see if we can get him maybe up another 20% to 75% at least, then I think it could really benefit him.

Thanks, Nancy. Yes, Ian is only 9, so he doesn't qualify. I am looking into a few things locally, and we are on a waiting list for a good therapist. I have stopped the old one, she just wasn't helpful. I can do more for Ian at home, and do. I am totally thinking about one of the intensive programs eventually once we get Ian to a stable place. he isn't flaring right now, but we can't afford to fly anywhere for anything this year, too many trips for IVIG so far. But it is totally doable for next year if I think he is in a decent place. We are still waiting for the last dosage increase of Prozac to take full effect (it is helping him) so I think once we iron out a few things, it could be very helpful to him. I want to wait a few months after his last IVIG (in two weeks) and see how that settles, see how the prozac helps and then we may be able to do it.

Does your PANDAS kid have many friends? Ian is very social. But I sometimes wonder if there will be a time when his issues start to affect his friendships. Tonight at soccer he had a fit over not using his soccer ball in the game. He is 9. It was a crying, screaming fit. His friend wanted to use his ball so they started wrestling and Ian got him in the nose. I think it was an accident, but I wasn't there. So Ian takes off running into the woods for 15 minutes screaming and crying. His friend tried to help him (even after Ian wrestled with him) but Ian just had a tantrum, plain and simple So embarrassing. He still does it at home occasionally, he is much worse with us usually than with others. I don't know. I worry someday nobody will want to deal with him. Breaks my heart on one hand, but on the other I can't figure out WHY he can not control his anger and impulses enough to avoid a full blown toddler like tantrum at this age in front of all of his friends and their parents. So far his issues haven't gotten in the way, but I really worry that some day they will. We keep trying to treat this as best as we can. But I get exhausted worrying about him some days. I know there are people here who must understand. : / Lisa

Yes, my BF is has worked there since she graduated nursing school, some 2o+ years ago. So I am not surprised. I have been in contact with the man that runs it and am going to keep the program on the back burner. I am currently looking for options locally, but I don't think there are any intensive treatment options for kids like that around here. We are on the waiting list with a child psychologist that treats OCD, our last one really seemed useless to me. It sounds like some stuff is going on at Mass General so I am going to try and figure that out. With all of our medical around here in Boston I would think we should be a hub of PANDAS treatment. I will be keeping the MN program in mind though, maybe for later next year. Ian may not be quite old enough for it, as he is very impulsive and has trouble focusing.

Thanks, Colleen! that would be great.