T_Anna

They were looking for help with OCD and liver function. I haven't noticed him as angry or more mood swings, so I guess I can leave it...will try to watch more carefully. Thanks, T.Anna Ds15

Has anyone had blood drawn at home? Doe sthe blood have to be spun before you can send it out? Thanks in advance, Tami

So Dr.T put DS on 1200 mg of NAC-Acteyl. A few weeks later I went to see a dr. Hollander who increased the NAC to 2400 mg. I'm not sure if it's doing anything. We have see some cognitive improvements in DS15 since increasing the Augmentin to 4000, but want to make sure nothing else will affect him adversely. Dr. T said it shouldn't have a negative impact, but what am I trying to achieve with NAC? Sorry to be so naive in my supplements, T.Anna

Talked to Dr.T and he recommended to run an Igenex test. We need to run more tests now anyway (last bloods in January, pre-IVIG) including Cunnigham, but not sure how I'll get him to the lab : ( T.Anna Ds15

Thanks. What is the treating protocol for this type if it's positive? I consulted two doctors who said it wan't Lyme, but will ask to test again. T.Anna

After SFMom asked whether he was tested for Babesia I looked over his tests and saw these. His Lyme was Negative, but it does show the following: IgG P23 present/abnormal IgG P39 present/abnormal What does that mean?? Thanks, T.Anna

<<Proper dosages from our LLMDs perspective for child your DS's size and weight would be: Augmentin 4,000 m.g., Azithro 500 m.g., Doxy 300 m.g.>> What he has from the symptom list: oCD Any symptom from the DmS-IV. delayed sleep onset. Weird dreams to nightmares. mostly no appetite I will see about upping the Doxy to 300mg. He tested Negative to Babesia: Babesia microti Antibody Panel Babesia microti IgM <1:10 Neg:<1:10 02 Babesia microti IgG <1:10 Neg:<1:10 02 This test was developed and its performance characteristics determined by ViroMed Laboratories. His Lyme was Negative, but it does show the following: IgG P23 present/abnormal IgG P39 present/abnormal What does all this mean? Thanks in advance, T.Anna

Hi SF Mom, I meant that before this flare, he was always a warm sweaty child and since December, I never really noticed him sweating. I hope you're right about the dosage. Good idea about the doxy too. He was tested for Babesia and doesn't complain of leg cramps. But I will prob re-run the tests as well as ask for Lyme tests from igenex. T.Anna DS 15

We see Dr.T: He will order any test and will prob go in any direction you agree is wise. He does phone consults so you may be able to reach him before lugging up to NJ. He does IVIG through Walgreens infusion that will come to your house (contract with nurses). We found this was a great for since DS15 isn't leaving the house at all : ( LLM is correct, that he can be hard to reach, but he will order most any test and email a script. Also will do multiple IVIGs, believes in abx long term and PEX. But we have had occasions where we waited days to hear back on labs. I've heard great things about Tanya Murphy at USF. T.Anna

We are in NYC and it's about $5-$6k. We went to see two practices. One wanted about $2k upfront to start, the other (which we liked better anyway) just wanted us to pay monthly. Our insurance does not cover braces. Also, I agree that starting later is fine...especially when it isn't a complicated case. T.Anna Ds15

I'll reply to my own post. I think that it is herx, am hopeful we are finally finding a crack and wedging him free Looked over my log and it seems that IVIG did more good than we thought, he seems to have declined since then. Really hoping we are getting at the infection. T.Anna DS15

Not sure if this is true, BUT I heard that Azithromycin can sometimes make the strep stronger and that Augmentin (penicillin) based is much better at fighting Strep. Have you tried Augmentin XR? T.Anna DS15

Any idea which pills would cause nightmares? DS was complaining about bad dreams the past few days. My guess is: Luvox NAC Delpin He is on Augmentin and Valtrex right now but I don't remember reading that abx cause nightmares. Thanks as always? T.Anna

After speaking to Beth Maloney, of Saving Sammy, I decided to up DS15's Augmentin. He has only been on high dose once for 10 days in December and again on 2000mg since April 5. She also mentioned that certain abx can make strep bacteria stronger (like the Azith). I called Dr.T and he decided that while waiting to run the Cunnigham and other blood tests we should take him off Deplin - thank you LLM for the heads up on the Folate Trap and Azithromycin (he's still on Doxcycline). At 5am, I woke up to DS crying hysterically. Can this be a herx? Or is it maybe too much NAC? I can put up with crying, if it means "something" is happening. Yesterday after the first higher dose of Augmentin, he started sweating, I haven't seen him sweat in months (and this is a kid who was always hot). Any opinions? If I take the NAC down (he's been on 4 NAC pills since April 18 and we havent seen any positives), then I can probably stop consulting Dr.Hollander who had added the Deplin, upped the. Luvox and doubled the NAC. I just wish I wasn't "playing doctor" and someone knew how to get my kid well!!! Thanks as always, T.Anna DS15 - finally asleep at 6:20am

These were not my doctors, I was calling because my friend pushed me and I was curious. The ID doctor said I should stop reading online which has become a red flag for me in general. I hope to consolidate some of the meds next week, since they were added one at a time and it had become rather a big mess. DCmom, how/when did you decide in PEX? I feel that we have gotten to that point, as he seems to have stopped making any progress. I will be seeing both Dr.T and Dr. Hollander next week and hope to get some of the meds consolidated as well as the blood tests done to see what has changed. It's just so frustrating to hear peofessionals give you a run around...these are supposed to be reputable doctors! And since he doesn't leave the house, it makes it harder to run around : ( And yes, the meds were added 1 at a time. We started with Doxcycline, and then added azith, then Augmentin, then Valtrex, then Delpin, etc He was doing a teeny tiny bit better with each step, but it never got MUCH better. We are now in a holding pattern of sorts. His mood is generally good. T.Anna DS15 Ps. It seems genetic testing cannot be done in NY, so I'll have to drag him to NJ and see if that works...not bad enough to have an ill child, but then there is a bonus of government red tape!!

Many of my friends are doctors or work in the medical field. A well meaning friends whose sister is an Infectious Disease doctor asked me to talk to her, I did. This ID doctor recommended I speak to her SIL who heads an adolescent psychatric dept in a large NYC hospital. This doctor refered me to a pediatrician who has treated MANY Pandas patients. I spoke to the pediatrician and emailed all our labs, timeline & summary last night. Today she called me back..... [the short version] "What are all these antibiotics for? I don't see anything on these labs that justify these medecines. I am SPOOKED when I see so much drugs being thrown at a patient, I see this all the time with Lyme. He HAD Coxsackie in the past, same with EBV, etc. most people will test positive for these diseases at 15. He needs a good pediatric psychiatrist, this should be treated psychiatrically in a theraputic setting. There is no test for Pandas. I've never heard of this lab in Oklahoma, but there is not PANDAS test. " I thanked her for her time and being so prompt with looking over the labs and calling me back. The positive? It was free, as a favor to the other two doctors : / So my question: Are we crazy to believe this will all work? At the moment, I'm waiting to get the kit for the Cunningham/Moleculera lab, and then run more blood tests (in addition to Cunnigham). DS15 is still stuck on the couch, not bathing, not going out, BUT....he does eat, socializes, is nice and is talkative (we took down the Luvox which we think created the havoc over the weekend). We are thinking of pursuing another IVIG and possibly PEX, this doctor made it sound as though I was blindly being led by two quaks who are not qualified to treat a headache. I really hope she's wrong. Here is my SPOOKY list: Currently he is on (5/2/13): Azithromycin - 250 mg/day Augmentin - 2000 mg/day Doxycycline - 200 mg /day Valtrex - 2 GM/day Deplin - 15 mg/day NAC - 2400mg/day B12 (Methylcobalamin) 1000 mcg/day Luvox CR - 100 mg/day Ubiquinol - 100 mg/ day Folinic Acid - 4800 mcg/day Advil - 800 mg/day Diflucan - ?mg Culturelle - 1/day Acidophilus+Bifidus- 1/day T.Anna - very tired DS15 PS. I asked the ID doctor about the difference between WesternBlot and Igenex and she said the information regarding Igenex being better, is internet nonsense!

We did two IVIGS at 2/1kgHD over two days and will probably do another one after we draw blood for the Cunnigham test...hopefully next week. T.Anna DS15

MAybe it was the increased Luvox??? In our ever changing chemistry experiment, we upped the Luvox another 25mg according to the psychiatrist. I think that might be aclue to the general change we have seen, especially the tape/paper things. 8 hours later he has sculpted a 5 foot sword with decorated hilt all made from paper and tape. DH and I have differing opinions whether that is progress or not. I am happy that he "did" something, DH thinks it's an obsession to stay up working on a paper sword. Btw, I feel so inadequate when people ask me at school how DS is doing and will he come back, etc. It seems retarded not to have any clue. T.Anna DS15

Thanks everyone!! It really means a lot to know I'm nit going this alone. Airial95, it does seem that I was upset since he was doing better. He's not talking to me or DH. He's only talking to my parents and his siblings. I agree about the therapy (CBT/ERP), but I'm finding it very tough to find someone who can work with a homebound teen. One guy I spoke to said he may have a practice that will work. Otherwise, all I have gotten is recommendations for Rogers Memorial which I'm not really ready to pursue. I'd like to see the Cunnigham test run and treat the yeast first and see if that shakes anything loose. I wish I had taken him to USF when getting out of the house wasn't so difficult. I was always bad at discipline. I am finding it difficult to deal with a DS and the lack if progress lately. T.Anna DS15

I believe that the definitive test is a stool test. T.Anna

I know many if you can understand. Ds15 sprayed his comforter with Lysol bathroom cleaner with bleach and I flipped out!! I am So tired of walking on eggshells waiting for him to get better. Now I am waiting for a script to treat yeast and thinking this is never going to end. Our other two kids basically jumped into bed to avoid hearing any fighting. We are usually so mellow, but tonight I just snapped. Maybe it's because he "seems" better. I know he still has severe OCD, but I brought up the bathing issue and he cried, banged his head on the wall (not very hard) and now is making structures from tape and paper and not talking to anyone. This disorder has really beaten me down today. How much longer can this thing drag on? I was optimistic Friday about dealing with yeast and proceeding with the Cunningham Test, but realistically that is going to take time and we won't know anything till late May. We will probably do another IVIG after his blood test, but I'm really not so hopeful right now. He's not psychotic and generally is nice and social despite not bathing, changing clothes or leaving the house in months, but that's not enough. Maybe I'm the one who needs to be put somewhere. Sorry for the vent. It was all building for a while. T.Anna DS15 dx 12/2012 Many abx 2 IVIGs

The doctor thinks DS15 has yeast. Can yeast prevent him from getting better? I know that too much abx can cause yeast, but would that be the clue as to why DS is still so stuck? I'm not sure how easy it will be to test since bowel movements are still a huge issue with his OCD. The doctor said that he is willing to treat if we cannot test. What are the symptoms as they relate to PANS? We hope to test with the Cunnigham test this week as well as a bunch of other saliva and blood tests. This really has been dragging on do long, it's so depressing : ( Thanks for reading. T.Anna Ds15 - triggers: EBV, Coxsackie, Strep, MycoP Meds: Augmentin, Azithtomycin, doxycycline, Valtrex, NAC, Ubiquinol, folinic acid, b12 (methyl), Deplin, probiotics, Advil

Moccosisco, we also had IVIG at home. It was arranged through Walgreens Infusion center and the contracted out a nurse in NY to come to our home. T.Anna NYC DS15

I've received the article fwded from the school psychologist, and another friend. Personally, I hope it will help those we deal with at the school. Maybe it will also make more psychologists aware that they need to recommend PANS testing...it would have helped us if our first psychologist had known about PANDAS/PANS : ( T.Anna DS15

Joan Pandas Mom, Thank You! Your son's story sounds so much like my son's (15)....except for the ending, we haven't gotten there yet : / I just PM'd you. Thanks again, T.Anna DS15 - birthday today