T_Anna

We see Dr.T and he does accept our insurance (Oxford). You can try Dr.Susan Schulman in Brooklyn (shorter drive than Ramsey,NJ) from LI. She is a pediatrician who has a good PANDAS reputation (she is listed on pandas network board). We have not seen her, but I am going to call today and heard good things from a service in Monsey,NY. You can PM me if you want their information. T.Anna DS14 Bronx,NY

Orlando, FL. I would prefer Tampa, definitely would be more interested in that.

I have a phone appt with Dr.T tomorrow. DS14 is in Augmentin XR, Azithromycin, Docycyline and Luvox (75mg). His PANS triggers are MycoP, Coxsackie & strep. We are 4 weeks post IVIG #2 with lackluster results. DS is in better spirits and seems better cognitively, but still goes to the bathroom for 3 hrs (down from 4) and won't shower, leave the house. Should I ask about Plasmorphesis (sp?) Try Valtrex or other anti-virals again? I plan to ask about the genetic testing again. Ptcgirl's analogy of a clogged vacuum made a lot of sense. I really feel like we need to push things harder. Next Thursday I have a meeting with a psych and hope to have new ideas on that front too. Thanks, T.Anna

We're in NY. If I can rationalize that it has done other patients some good then I can try to pitch it to DS that way. I don't want to bring it up and then give his siblings a reason to hate the situation even more. T.Anna

I read in a few posts that PANS kids do better (sometimes only temporarily) in warmer weather. I have an opportunity to take the family to Florida as I need to be there for work at the end of the month. DS14 is still not leaving the house/showering/ going to th bathroom for less than 4 hours. Do you think there would be a benefit to pushing him to go to FL? I was just going to try again next year, I know the other two kids (apropos the Glass Child post) would love it, but I don't want to leave DH and DS here behind. He doesnt rage and his mood is pretty good (this past week consistantly), but he hasn't changed his socks, fully bathed in months (he is using the dry shampoo, so thanks to whoever suggested that). It's 3 birthdays in the family that week (mine, DS14 and DD9), so there is definitely reason to celebrate, but I don't want to fight a losing battle. Thoughts? Thanks, T.Anna

Thanks so much for writing this. My middle son, 12, (non pandas) has been getting really annoyed with his brother lately. Example: "Why can't he just get up and take a shower?!!!" His grandpa took him out yesterday, and he went to the gym with his father later in the evening. These other kids definitely need more "time ins" (as opposed to "time outs"). Both nop Pandas kids (DS12 and DD9) have gotten irritated by people in school and their friends asking about DS14. Thanks again. T.Anna

We had a second IVIG 3 weeks ago. DS 14 showed some improvement, maybe 5%, but we still have hope. T.Anna

The Bronx, New York City. T.Anna

I had my first allergic reaction in Colorado. We wnt hiking and I "got" hayfever and now suffer with seasonal allergies every year. T.Anna

Can you test for mold yourself or does it require a service? We live in an apartment and wondering if this is something we can check ourselves or ask the super. Thanks T.Anna

Can you give l-Lysine with antibiotics? In the morning/night? I want to try it next weekend if things don't progress more. I know it's trying many things at once, but I feel by then I'll see how much more the Augmentin wis helping and then try?? T.Anna

Almost 6 months! With many abx, 2 IVIGs, etc. I believe there are many variables that play into the episode severity and duration: - Age of the child during episode - How long they had untreated/undiagnosed PANS - Amount of triggers/infections DS has had what we though were unique behaviors since he was 3. He refused to write in first grade, was rigid, suffered a from walking pneumonia in 4th grade and started exhibiting a bit if rage in 7th grade and things were more OCD, but we never thought PANS. It all spiraled this fall and he hasn't gone to school since January. He looks and talks better now and moves around more, but this is till very far from functioning : (

Ok, so we added Augmentin and Dr.T wanted to try DS14 on Luvox again. He is taking 50 mg as 25 mg since Friday (4 days). Last night, DH and I told him that we want to take him for a blood test today. He started crying, told us to leave him alone and then said he doesn't want to be alone. When he calmed down he said he was really anxious that he didn't want to "Go anywhere" and that he felt conflicted that he liked us and hated us. Before last night's conversation he was in a really great mood all day and it seemed as though he was really beginning to get more out if the new meds. My question: was it that Luvox had the opposite effect of what we have it to him for? Or was he so crazy about the possibility of a blood test and needing to leave the house? A friend came over yesterday and talked a ton about school and DS said that also made him worry about going back to school. He is so stuck right now, but the return of crying/rage seems like a step backwards. Thanks as always, T.Anna

Wow! So nice. Enjoy it and wishing you (and all of us) many wonderful more days like this one. T.Anna

DS(14) is on Doxcycline,Azithromycin and Augmentin. Adding the Augmentin (Friday too early to really tell), may have helped. I took him off florastor a week ago and now he is only on culturelle. What probiotics do you guys like? please include brands if possible. Thanks, T.Anna

I agree. DS is so non functional at the moment, but when he was able to pull it together we encouraged him to get to team matches etc. It is definitely something that motivates them in a healthy/positive way. As far as food, can you make sandwiches of something he likes as a fall back? T.Anna DS14

My DS is much older at 14 (almost 15) VG are a huge part if his social world, especially since he is in such a bad shape. His buddies come over on weekends and days off and play as well as his younger brother's friends. I must admit that we are struggling with limits on the ipad at night. But that he can also go days without playing VG. His phone he explained is his link to his friends so we generally leave that one alone. T.Anna

Thank you LLM. Didn't know about Dr.Jenike, sounds like the type if therapist we need! I have a few local names that I will tackle calling this week. The generic test Dr.T wanted to do is $100, so maybe it's the same one, but why would it not be allowed in NY state : ( I will double check what test it is, I believe it was a cheek swab kit?! DH had a heart attack at age 31 (and bypass surgery), so I'm sure 23andme would be useful information since it's a worry we have (no one in DH's family had heart issues and he is fit/athletic). Anyway, my non PANS DS woke up this morning with what looks like stomach flu. Now to go disinfect all the remotes and game controllers they all shared last night. Thanks as always, T.Anna

LLM I agree that we are throwing a bunch of new things into the mix and it'll be hard to know what is working...hopefully, something will work and we can try to reverse detect once he's in a better place. The doctor is trying to figure out why we haven't made any progress. The genetic testing is because he thinks DS may be dificient in something and rather than "stumble around in the dark" (his words) and trying supplements he wants to test, I believe it was the Courtagen. Tpotter, He has been tested for those things, but a LLMD would prob beneficial, except that DS won't leave the house right now (it's been two months) so the goal right now will be to have the HHV6 tested. According to Dr.T the HHV6 can be re activated by abx use : ( Thanks for the support. Knowing that others have come back from this far in a whole does make me have faith that there is a light at the end of the tunnel. T.Anna

Ok, so the doctor isn't thrilled with the lack of "real" progress from IVIG. Says that DS seems really still stuck in the mud. Last night we added Augmentin (to Azithromycin and Doxcycline). He also wants to test DS(14) for HHV6, which would make sense since Coxsackie is already a trigger for DS. He also wanted to do the Cunnigham test, but we need to wait until more time passes from the IVIG. He also wants to run genetic testing, but we need to do that in NJ since NY doesn't allow it (huh??). Last night I upped the Luvox +25mg so now he is at 50mg. DS spent 8 hours in the bathroom last night and then came out and actually read the paper, haven't seen that in 3 months. Wondering if maybe IVIG is working just not a ton. I just hate waiting. This school year looks like it's gone. I know that getting DS healthy is the important part, but it's hard with holiday milestones. Thanks for reading. T.Anna

I can check once I'm home, but they generally last a long time. I have never had any expire before I used them up, but I've used it everyone. T.Anna

Quidel QuickVue Dipstick Strep A Test, 50/Bx - I have found these the most accurate. My friend who is a pediatrician has given me tongue depressers, but I don't use them. My kids allow me to go in a few times to make sure I get a good sample. I used to buy these, Quidel Quick View In-Line Strep A Test, Box/25, but the last box I bought has given me 3 false positives (this was confirmed at doctor's office on his rapid test and they sent out for the longer tests). I buy them on Amazon. T.Anna DS14

Double post

Thanks beekneesmommy and cobbiemommy. I love that line in Toy Story. My movie reference right now is more like the line from Princess Bride when Andre the Giant says to Wesley "you nodded your head, doesn't that make you happy?" T.Anna

Has anyone had to do 4 or 5 HD IVIG treatments to get their child out if a flare? DS14 is two weeks post IVIG #2 and we are waiting to see if it will snap him out if the flare, but I was wondering if anyone has needed to do MANY IVIGs to see the reset button? Keep in mind that we are realizing that DS has probably had PANS since he was 2.5 or 3 when he started losing speech and we had him tested for Autism (came back PDD NOS). Thanks as always, T.Anna