lmkmip67

I watched it too, and frankly it freaked me out and I could not sleep most of the night. I am two weeks from Ian's appointment with Dr. B in CT. So we don't have a diagnosis yet. His 3 or 4 tics seemed to have calmed down quite a bit in the past 3 weeks. I don't notice the vocal one at all now. At first I thought that was a good sign and likely meant PANDAS. Until I saw this show and it said Tourettes starts out that way, transient. I shouldn't have watched it. I cried, hoping that won't be the outcome for Ian. He is so OCD as well as ticks and some tantrums. Not sure I can call them rages. But there are times he does rage, just not to the point of breaking things or hitting anyone. Then again, he is only 7.

Yep, it is a list. I will fax it to my doctor and see what happens. I think she should order most, if not all, of them. There isn't much there that seems out of the ordinary. and if not, then we will get them done with Dr. B's orders if we have to. I can still do it locally. Until we talk about IVIg, I am not too worried about the insurance.

Ah, ok. Will they just send me the results then? That makes it much easier than trying to fight with my pediatrician for certain orders. They sent me a sheet that lists the work that is needed. Is that all I need to take? It is all so confusing with insurance and all of that.

Sorry for all the questions. Being new, I have a ton. I have an appointment for my son with Dr. B in CT. They are mailing me the blood work orders they usually order. My pediatrician is ordering some things as well. I shared the list with her (well faxed today). She said she will look it over and order what she thinks is necessary. Just didn't know if it would all be necessary. So anyway, I did try to tell her I would rather do the blood work with her than go down there when his visit isn't covered anyway and have to go back if he orders additional blood work. The question I have is the receptionist said I could take the orders they are mailing to me to a lab myself. My question is if I bring those orders to the lab that my pediatrician is giving her orders to as well, will they do his as well and if so will my insurance cover the labs? I have Harvard Pilgrim HMO in Massachusetts. I know our children's health is priceless, but I have a very limited budget and just don't have hundreds and hundreds to pay out of pocket. I am already paying his visit out of pocket most likely. So anything I can get covered I need to try. Thanks! Lisa

I also wonder what is the longest it has been given without concern to damage. I have given it to my son twice a day for three days and it makes a world of difference in his mood and vocal tic. Of course some things remain. Last night I gave half a dose and nothing this morning, as I am concerned. And he is a bear. He was much more pleasant the last three days. This, of course, means nothing to my pediatrician. It helps so much though, at least in the mood, that I wonder if this really does give a clue that we are indeed dealing with PANDAS?

Nancy, I will for sure! It certainly can't hurt my case, anyway.

I have an appointment in 4 weeks with him. I will be calling Dr. Fuhlbrigge tomorrow. If he is really booked that far out, then perhaps I can really use that to my advantage for the insurance. I will be calling them and pushing for that. I appreciate the input!

Thanks, Nancy. I did find some that he does treat with IVIg so that is good to note though. My goal is to not use him instead. I want to see him and Dr. B at the same time. I am going to see Dr. B as soon as we get the blood work for DS back. I await your list and will call my pediatrician to add anything that isn't there. Then take him in tomorrow or the next day. I am not even worried if Dr. F won't treat him because then my insurance will ok an out of state specialist. lol If DS has high titters I will listen to have Dr. F has to say. Insurance is my issue, I am thinking, so anything I can do to help that issues will be a good thing. But regardless, we are moving forward. Thank you for that info on Dr. F. He could be useful in the fight. I won't likely get in to see him before Dr. B anyway. I am calling Dr. B today to make an appointment for DS. For the first time in quite a few weeks I am feeling happy and more positive.

Thank you, LLM. I am not worried about paying $300. It is more the thousands other treatments could cost as I don't have it. I want to help my son and worry if I can't. So that is where my worry is. Thank you for the information. Someone is emailing me the list of tests Dr. B looks at so I am going to add those to what my pediatrician has already ordered. I can pay for an office visit, especially if I can go down with the blood work already. I am moving forward with an appointment here to see Dr. F. I know he is conservative and likes to see high titters. But it could be a critical piece for me if he can't treat DS, then my insurance will be more likely to cover the out of state Dr. for anything else we may need down there. And if not, worst case is I find an insurance that does and hopefully switch in Oct. when it is open enrollment at my DH's job.

I started giving two doses of Motrin a day about a day and a half ago, just to see, as I have heard it used on here. We are awaiting bloodwork and making appointments. But I was curious. So far it seems to have had a huge impact on DS vocal tic. He is still ticing other ways but I do see some impact. Is this significant? I want to see more days of a difference before I am convinced. And of course I know it is a bandaid. But I just wondering how telling it is? And also is there anywhere that it is documented that this can be an issue of inflammation? It does seem such an odd coincidence. Not sure my pediatrician would even believe me. lol

Dr. Fuhlbrigge in Mass? I have a referral from my pediatrician for my son to see him. We are also working on seeing Dr. B in Ct. But there are insurance issues. So I have to go a local route first. But he doesn't sound bad anyway, so was curious if anyone had any experience with him and how does he treat this? Does he believe in long term antibiotics and IVIG, etc? Thanks for any info.

well, I talked to my pediatrician today. She told me she is not likely able to get me a referral for Dr. B in Ct. because of my insurance (Harvard Pilgrim HMO) until I see someone locally that works in this area but says they can not treat him. So basically we are doing a few things to get the ball rolling. The is ordering the tests locally that I asked her to. Only one she has no clue about is fungal, but for now, that is ok. She is getting two strep tests done of some sort, one is more accurate, getting a lyme test and then something else, I forget what. But she spent 1/2 hour on the phone with me looking over a PANDAS write up and the suggested tests. So we will get those done this week, on Saturday. If the titters are high she said will start him on a 10 day round of antibiotics, augmentin. She is cautious about all of this, but is not ruling anything out. She did suggest I get the ball rolling to see other doctors too locally so that if that is it, we can start getting insurance to cover it if I do go to CT. So she will put in referrals for two other doctors, one a reumologist that says he deals with PANDAS and a neurology/psych person. So that is good. And she did say that she thinks it is totally valuable to call Dr. B's office and ask about what others have done, see how much a consult would cost out of pocket, etc. Especially if I have the blood work results to take with me, that might be a very viable first option for us down there while we see someone locally and get that dealt with. Then perhaps insurance would cover with a letter. So I feel at least like we are starting the process. But I am worried about insurance and coverage. It may sound selfish, but I don't have thousands to do treatments and all of that. I am taking it one day at a time, and hoping we can figure it out. She didn't know anything about Dr. B, so I gave her his web site. She is just cautious about antibiotics long term, and I understand that. But I want to figure out what is going on with my son so I can help him. He is really struggling with tics (abotu 4 now) and OCD stuff like crazy. She is not ruling out PANDAS though, so I think as we work through this she will at least be on board and supportive. And that, of course, is important if we need to get referrals out of state and any treatment done locally. Does anyone know anything about Harvard Pilgrim HMO and Massachusetts and treating this out of state?

Wow, thanks for the info, everyone. I am hopeful that I will talk the pediatrician tomorrow. If not I will be making a same day appointment on Wed. She has my message and I am just waiting her call back. I want to print out some stuff about it before I do see her. And I am going to request a referral to see Dr. B in CT. I just hope they take our insurance. I do feel I am doing what I can to help my child, this is new to us. I am reading daily, worrying, trying to figure out the right thing to do. I appreciate the input, all of it. His vocal tick is getting worse and worse by the day. I think some is the stress of school coming up. He doesn't love it. He is nervous. I feel like I am wading in quicksand. And all my husband can do is stress and worry. He can't even really listen to my worry about it. It all goes back to his worry. I feel be worries, but all of the doing falls on me. He has a job far away, so he can't really take him to appointments as he is our main income. We will see, I am taking it day by day. I just want to help my son, it makes me so sad to see him like this. I didn't wish this for him.

Hi Kara, Thank you. I did email you yesterday. let me know if you don't get it and I could just PM you, I guess.

Unfortunately I found out the Dr. B mentioned here is over 3 hours away for me. I am not sure that is even possible to go that far.I know it would not be a one time thing and with owning a business, having other kids and a husband that works 12 hours a day, I couldn't do it. Surely there has to be a doctor closer to Boston that deals with this and has some success?

Thank you all so much for the replies. I will have to see how far away the doctor is. I am wondering if it is worth trying to get in somewhere here in Mass to at least get a diagnosis? I don't want to ignore getting him evaluated for OCD and a tic disorder either in case this isn't it. But he sure does fit the profile from what I have been reading. Is there any place I can find some really good, concise information to print out for our pediatrician so she will at least see the need to do the blood tests? One other question. I was reading on some general sites that they don't see antibiotics improving the tics and OCD, but is only used as a preventative. Yet so many on here seem to be on long term and do see improvement. I do understand this disorder or syndrome is not well studied yet.

My son just turned 7 and I believe he may be dealing with PANDAS. He has always been a ticky, anxious, kind of OCD kid. stubborn, etc. But everything got much worse this past spring. He developed a tic that turned vocal. His reading teacher asked if he had strep recently, and he had! It has been treated with the typical antibiotic and he seemed to get better. we took him back in and had him tested with a throat culture, and nothing. But the tic remained, and it has gotten worse. He now has about three or four of them, has OCD symptoms that seem much worse than before, etc. We did start seeing a behavioral therapist thinking it was just transient tics and some anxiety. She soon realized something else was going on, or more than she could deal with. So we are back to square one, sort of. I have been reading more about this and I really want to get him tested, or find out if this is what we could be dealing with. My next step is to contact his pediatrician again and ask for a referral to a doctor that can help us. But I am unsure who to ask to see. Some of my questions are this.... Should I ask his pediatrician to test for the strep titters? I am not even sure exactly what to ask for. Who should I ask to see? I have a few names from here in Boston near where I am. But WHO, which one? Some are neurologists, some immune type doctors, etc. I am so confused. I want to kind of get him tested in general for OCD and TS. But should I try the PANDAS route first? Should I just pick one doctor listed here, perhaps a neurologist and get him tested for all the above? Some didn't seem willing to give long term antibiotics again though. Or be open to the IVIG treatment. Forgive me if I am asking the wrong questions or saying things the wrong way. I am feeling a bit overwhelmed and confused. I am calling his pediatrician on Monday so just need to kind of know what should I ask for from her? Testing from her? And I know it can take months to get into some doctor that treats PANDAS. What should I do in the mean time? Ask her to treat him with antibiotics? Start CBT for him again with someone that specializes in OCD itself? As you can tell, I am really confused. I want to help him as fast as I can, but it takes so long to see these doctors..... Thanks for any info. I am in Mass, near Boston if that is helpful in recommendations.