StillHopeful

Hi - I was referred to a "Dr. I" on Long Island in Plainview NY by a service. Just curious if anyone has gone to him. If you know of any other LLMDs on Long Island please PM me. Thank you!

Our first visit with him was in his office. The rest have been over the phone. He does a history and you should bring copies of any tests you have done on your own plus medical records that you want him to have, etc... I think the visit is about 1 hour. He did a minor physical exam of my child who was very uncooperative (not sure if he normally does more). He did make many observations regarding his demeanor, ocd, etc... He also spoke with him directly. He gave us a script for 23 tests strep, mycop, Lyme, viruses,... He will base a lot of what he recommends on your discussion, symptoms and history. Make sure you write down any questions you have and write down his answers. I know for myself, I forget what the doctor said as soon as I leave the office! He is very nice and will put you at ease. The office is a bit plain. Nothing fancy. Good luck to you. You picked a great doctor.

We use Dr. T and I really like him. He has dedicated his entire practice to helping children with PANS/PANDAS. He usually does not have much of a waiting time to see him. He also does phone consults. He only takes Oxford Insurance. There are others on this board who have used him for longer. We have only been seeing him for 3 months. I do not know the other doctors but they all have good reputations.

Hi StacyH - Yes, it looks like we do have a lot in common. My son also had symptoms for a long time and was misdiagnosed. Thank you for letting me know about waiting until after the testing is completed to come up with a diagnosis for the IEP. I will do that. I completely understand how you feel re the PTSD. Good luck to you too!

Thanks Broo100. Will keep Dr. Silverblatt in mind if I ever need a PANDAS friendly ped. Mine "believes" but doesn't treat it.

OK, couldn't pm you either. What did the doc do wrong? The testing itself or the interpretation? Recommendations? If you don't wnat to reveal too much that is fine.

Hi Smartyjones- Not sure why you couldn't PM me. I am going to PM you and then maybe you can PM me back?

Broo100 - You are so lucky to have caught it early. Are you in NY/Long Island? If so, can you PM me your pediatrician's name? How long did it take for you to see an improvement in your child's tics and what antibiotics were you using? We are seeing Dr. T too. It is just taking a longer time for us to see any pos effects. Thank you!

The school psychologist just called and they are changing the location to the district office building in the hopes that he is OK to go there. We will see. I have to say that this dr scares me and I don't trust him. I think he doesn't know what he is doing and I am pretty sure if I bring up PANDAS (& I will) he won't agree or listen to me. He is very dismissive. He also told me if he doesn't get tested then I can't get services (which I don't think is entirely true) and I should do everything in my power to get him there. I think I may bring a psychologist/student advocate that I know. He specializes in Tourette Syndrome. He went to school w/ this school psychologist. I don't want to appear as being "armed" with a doctor. Most people in the room I think will be willing to help and this school dist does have the reputation of giving appropriate services. I just don't know what the possibilities are and what to ask for. I know he needs help with the anxiety and I think OT for the sensory particularly as it relates to school (the smells, the crowd, the noise ...) would be helpful. In regards to treatment, we are seeing Dr. T. DS is on Biaxin for Mycop and Augmentin for Strep. The Biaxin did nothing for 3 weeks and so the Augmentin was added 2 wks ago. I saw some improvement days 5-10 and then he went back to where he was. We are using 2 500 mg pills for the Aug and yesterday he said to give them together and not space them apart (& not at the same time as the Biaxin) and see what happens. uggg. We have been at this a long time and very little improvement. Also, just had his brother tested (TS/OCD/ADHD)and his strep titer was high (nothing else) so Dr. T is putting him on an antibiotic too. Hopefully it will help both of them. Question - With a PANDAS or PANS diagnosis how do you explain tourettes? Would I say it is Tourettes caused by PANDAS? Do they still have TS? Thank you both for your advice.

The Augmentin is dosage is based on the patients weight. If you look on-line you should be able to find something regarding pediatric dosage for Augmentin. My son is over 100 lbs so he takes an adult dosage (pill) which is 500 mg 2 times per day. Also, Prednisone is a type of steroid. I am so glad Dr. K got back to you. Hope your child feels better soon.

Hi - From my understanding Tourette Syndrome usually occurs before the age of 18. It may be a tic or a muscle spasm. If I were you I would see a neurologist and have it checked out. Also try to eat healthy food and avoid alcohol and food/drinks that are caffeinated like soda, coffee, tea, chocolate and energy drinks. For more info on TS you can check out the TSA.org page. Good luck!

Hi -- My son currently has a 504 plan. He is in 7th grade. He has PANDAS (officially diag Nov 2012). Still working on getting the right medication so he is still symptomatic. His "official" diagnosis at school is Tourette Syndrome (which he hates stigma). Major issue is school phobia/anxiety. He has not attended school since Oct 2012. It was a new building (7th/8th grades) and he did not transition well. The school finally provided a special ed teacher (who happens to be a dr) and he is finally learning at home. We have only had 4 sessions so far. The other teachers they sent caused him too much anxiety and he refused to work with them. He also has major sensory issues (Sensory Int Dysfunction), Tics (verbal cursing and noises, plus motor) OCD (the cursing may be an OCD and contamination), may have math and read skills issues due to PANDAS (hard to tell). Normally bright and enthusiastic. Not anymore. Refuses to go back to "that place". Says he will go to high school when he is in 9th (diff building). The school district's head of student services suggested I get an IEP for my son so "he can take advantage of all benefits available to him under the law". Great! What does that mean? Questions: 1) Should I change diagnosis to PANDAS or am I over complicating things? I will make sure it stays OHI in any case (not emotionally dist). 2) My understanding is that an IEP is supposed to be goal oriented. What type of items will be on there? Can you give me an example? They aren't going to be able to manage his tics or ocd or sensory issues? 3) Will "labeling" him be an issue moving forward? 4) Anything I should know.. BTW, the school's psychologist wants my son to come in for testing at the school. Duh... he has a phobia. He won't go. How important is it that he take this test? Supervisor of Student Services said she would just mark him "untestable" if that were the case. Were any of your children "untestable"? Thank you so much!

I think it is a flare. It does not mean it is TS. Symptoms can come back with illness and exposure. Did you try changing to a different antibiotic? Some people need to use 2 different ones at the same time. Did you get any new bloodwork drawn to see if something has changed?

MomwithOCDson- Do you mind sharing the Aug XR dosage that your son was on and did you take it once/day? Glad to hear lots of postivie stories.

Hi - I have been thinking of using NAC for my DS12. For those using or have used NAC, could you answer a few questions for me? Do you know if it can be taken with Augmentin, Abilify or Zoloft? How soon do you see an effect? Was going to use a dosage of 1200 mg-2400 mg/ day for 100 lbs boy. I know there was a study done at the Univ of Minn and that was the dose used. Study was for Trichotillomania, I am trying it for other ocd behaviors. Please let me know what you think. Thanks.

I am really so sorry. They have their good days and bad. With OCD we usually don't know what is going on in their heads. My DS12's OCD is not as severe (mostly contamination issues). He also was improving over the past 5 days and last night/today starting increase ticking. I wish I had some better advice. I would just give him his space, while keeping an eye on him. Don't stress him out about missing school, making up work. More anxiety will make him worse. Hopefully someone else on this board will have some other thoughts. Was he checked for Lyme? W/ Lyme there is a herxing effect and they get worse before they get better.

I know that for my son stress makes him much worse. Is your son fearful of getting his labs drawn?

So sorry. I am sure you know you are in good hands with Dr. T. Good luck!

Just to add -- you might want to give the antibiotics a good chance to work before you add another medication so you can see what is working and what is not. The SSRIs (including Luvox) make my son (almost 15) very short tempered/angry and we are tapering off very, very slowly. This is his 3rd one (and I think his last). If you are asking about the time of day to give it I don't think it matters too much. If it is sedating for him give it at night. Good luck to you.

Emily K - Did you start the antibiotics first and then add the zinc? Did you see more of an improvement when you added the zinc? Rowing mom - how can you get KPU tested? Does a doctor have to order it or can you do it on your own? Thanks.

MichaelTampa, I think you are probably right. We are treating for PANDAS right now guess I should look for an LLMD. Thank you for your post.

Thank you for your post. Just wondering if you could share what your treatment is and how you are feeling?

Hi - I was reviewing my son's lab work and I noticed that he has a pos C6 IgG/IgM (2.42) and band 41 on WB was present. He is neg for the WB bands and neg for Bartonella, Babesia and Erlichia. I was told by his PANDAS doc (who ordered the test) and our pediatrican that he does not have Lyme. But now I am second guessing that diagnosis since they are not LLMDs. I know the band 41 could be from another infection but what does the C6 mean? Thank you.

Landamom - My son is currently taking an SSRI and I am trying to slowly wean him from it. It is not at all helping. We slowly tapered up and tried it for a few months and there was no decrease in his anxiety level (or ocd). It actually got worse. So, I agree with the above advice. Try it if you and your drs think it is a good choice for your child but go very slowly. I recommend keeping a journal so you can write down any significant changes in symptoms or behaviors as you increase the dosage (wish I had done that earlier). I know for myself when I try to think back I can't remember if I added something like a vitamin and is that when I saw an uptick in behavior or was it when we increased the meds..???? My son also gained weight from it. My older son reacts very positively to the Rescue Remedy drops (less so w/ the candy). We give it to him when he gets very upset/anxious about something and can't control himself. He takes the drops and is calmer with in a few minutes. FYI, I have given my younger son (12) Ativan in order for him to be calm enough to see his at home teacher (he has school phobia). It worked a little but when it was wearing off he had some very odd and scary behaviors. KO's Mom - I think I am going to try the Pepsid at night. I also have difficulty corralling my boys to take their meds several times a day so adding it to their nighttime dose would be good. Thank you!

Has any noticed that when they give their child vitamin D it causes behavior problems? My son seems worse with vit D. (1000 IU/day) He gets very short tempered and seems to have more anxiety. I am not 100% sure if this is the cause. Will be observing over the next few days. Any thoughts?