T_Anna

Just went to your other post JoyBop. Here is the dosing you wrote: PHARYNGITIS/TONSILLITIS: (5-DAY REGIMEN) DOSING CALCULATED ON 12 MG/KG/DAY FOR 5 DAYS. WEIGHT 200 MG/5 ML TOTAL ML PER TREATMENT COURSE TOTAL MG PER TREATMENT COURSE KG LBS. DAY 1-5 8 18 2.5 mL (½ tsp) 12.5 mL 500 mg 17 37 5 mL (1 tsp) 25 mL 1000 mg 25 55 7.5 mL (1½ tsp) 37.5 mL 1500 mg 33 73 10 mL (2 tsp) 50 mL 2000 mg 40 88 12.5 mL (2½ tsp) 62.5 mL 2500 mg By this chart, DS should take more than 2500mg?? Wow!! Dr.S is gone for two weeks. Maybe I'll call Dr.T and check on this dosing. T.Anna

Thanks JoyBop. DH is amazing! It is DS who hates me : ) No worries about the hijacking. So your daughter is on 100mg a day at 42 lbs? DS is on 500mg at 120lbs and considered an adults at 15. So based on that dosing DS could (should??) be on 700-1000mg a day?? T.Anna

Thanks. I hope so too!! T.Anna

Glad to hear she is doing better. Not used to that dosage. What is that compared to 250mg and 500mg? T.Anna

Ifran: all she said is that she found that they did better on Azithromycin and that she does not want her patients using Greenstone made Azithromycin. HTH, T.anna

MomwithOCDson: Thanks, I have a trade show tomorrow and DH will stay with DS. I am making the most of this Cold War, since I'm usually the indentured servant with DS. Plus, I was able to be with the other two kids. Hopeny: Thanks for the heads up regarding Azith. We actually had a nice and thorough discussion regarding the medications that DS is taking. We came to her after trying MANY different things, so I feel the changes are thought out. Dr.S told me that she found certain patients do better on Azithromycin, especially Ashkenazic Jewish patients, others she sees do better or Augmentin. DS has been on Augmentin at high doses for months and we have seen no change in the OCD, so adding Azithromycin and going back down to 2000 mg of Augmentin is worth trying. Besides DS is of Ashkenazic decent. Dr.S has worked with Dr.T in the past and has an understanding of why it can sometimes be difficult to receive proper follow through. I do feel that we were able to survive with this severe OCD this long because Dr.T has become a pro with home services (IVIG, blood draws) and remote consultations. Thanks again, T.Anna DS15

I think ICU guarantees round the clock monitoring and a private room. She has done this before and I guess this is the formula she likes. I'm very comfortable with it. Since DS blames me for the trauma and is not speaking to me, I was able to nap and go out this afternoon. T.Anna

I didn't give him more than a few hours notice. It was as good as could have been. He refused, until we almost called the ambulance and the he cursed,grabbed DH crocs, his baseball hat and left crying the whole time. T.Annna

By the way, we spoke to our local volunteer ambulance company. They said that there are ambulette services that will come to transfer patients to appointments and to the hospital. You may have to pay, but it might be worth getting the numbers locally, we have one and were very close to calling yesterday. T.Anna

So we got DS out of the house and to the doctor yesterday. I went in and spent over an hour with her talking about DS's history and DH and DS stayed in the car. The doctor was fine with that and she came out to the car to examine him and talk with him. She was very thorough and really knew her stuff. She said she has no real reputation because she is just a pediatrician with a practice in Brooklyn. She changed up some of the medication. She took him off Valtrex, Biaxin, Difluan, titering down Augmentin and off the round the clock Advil. She added Azithromycin (which she finds certain patients respond better to), omega 3 (fish oil), Rispedral. We will see what happens. In two weeks we will begin working on the process for having plasmapheresis done as an inpatient. DS's tonsils are very small so she feels a T&A may not be warranted. She felt that DS was very very sick, "It's all attacking his brain, so he doesn't seem traditionally sick, but he is really suffering!" She felt that after the med change, he will still need to try PEX, and until we haven't done that, we hasn't done everything. It will be inpatient, ICU monitoring for a week (5 PEX procedures). She believes strongly in CBT, but she said it only works when the child is on his path to recovery. She talked to DS about needing to go to the bathroom every other day, but doesn't know if he can control that even. We also received a script for PT, his muscles are tiny and she wants him to move around more. He cannot do any exercise because that is part of the OCD...he used to wrestle and would always win the push up challenges : (. There are many old people in my neighborhood and so a few PT places started to come to patients homes. We can probably start that rather quickly. That's about all I can remember. Getting him out was harrowing. He still talks to DH and my dad. Who were the ones physically helping him out, but not to me. Oh well, great to be the mom I guess! Thanks for all the advice, it really helped to see what others have been through and survived. T.Anna DS15

The doctor we saw yesterday said she has many patients who respond much better to Azithtomycin than Augmentin. You may want to switch. There was a recent study that said Azithromycin, even without the abx component can help immune disorders and even IBS. We just stopped Biaxin so that we can try Azithromycin at 500mg a day. T.Anna Ds15

Had our appointment. He walked on his own between his father and grandfather. He had a huge meltdown and was crying, but got in the car. Wouldn't get out once we got there, but dr. Came into the car to examine him. Will post more tomorrow. T.anna

Thanks for posting, the cop experience is definitely something DS will want to avoid. We have an appointment today. Wish us luck. T.Anna

As I've mentioned in my post about how to get DS out of the house, we may have an appointment tomorrow. DS was complaining about his stomach and I casually mentioned that we will have to go out and have someone check everything out at some point. He got annoyed and anxious and told me to stop talking about it. I said that I'm only interested in helping him get better. Should I mention an appointment again, or just wait to see tomorrow and "spring" it on him?? We will know at 7:15am and the appointment probably won't be before noon with one hour of travel time needed. Thoughts? My guy is that I'd prefer he relax today. I don't think a warning will make him any more accommodating or less anxious. T.Anna Ds15

My gut is that you should try NYU or Maimonidies. Our go to hopistal has always been Columbia Presbyterian, but they seem to be about 25 years behind the in PANDAS. One pediatric neurologist there told me he has only seen PANDAS in the zoo. Our soon to be former pediatrician said that infection numbers will always go down and it has nothing to do with antibiotics and another pediatrician there had "never heard of PANDAS". At NYU there is Dr.N of Brain on Fire fame that some here have used. At Maimomidies (Brooklyn) there is Dr.Schulman who treats many PANDAS patients. Beth Israel might be Ok, there is a good PANDAS familiar dr there some nights, not sure about the others. DS also had weeks of being awake, last week he suddenly started falling asleep at 11:30. The past few days have been around 2am which is also a huge improvement. T.Anna DS15

Just looked it up on drugs.com: can increase the risk of an irregular heart rhythm that may be serious. Although, it says the same foe Azith and Diflucan and DS was on both for a while. Although, I haven't heard him complain about palpitations in a while, come to think of it. Guess ill wait to see what the doctor says regarding the pills. Thanks!! T.Anns

DS's new thing is not taking his pills twice a day, instead only taking them once a day. Since Azith has a longer half life I was wondering if I can add it tomorrow and see if it helps. We are going to the doctor, we hope, on Friday. In the meantime, if it wasnt dangerous, i thought Id try it. Thoughts?? T.Anna DS15

Thanks everyone!! We have been doing this "remotely" since February with home IVIGs (not much help), home blood draws, genetic testing, Moleculera, etc. Lately, we have seen some improvements. He no longer has insomnia, rather he falls asleep (against his will sometimes) between 11:30 -1am, and sleeps until noon. I have no idea how that happened, but nothing else seems to have changed. Unfortunately, he has also basically cut his pills by half. He hasn't slid at all (yet?), but maybe that's because he is taking such high doses of Augmentin, Biaxin and Valtrex that it doesn't make so much of a difference?! If the appointment is available (we will know Friday at 7am), then we will go...I am strengthened by the fact that others have succeeded in this before me. Thankfully, DH is a very strong/big guy so DS, although already 5'6" or taller, is so slight that it should be manageable. Hopefully, our seriousness will be enough and DS will just walk out in his own. Thanks for the hugs and prayers!!! T.Anna PS. BamaMom, did you get my PM?

DS hasn't left the house since February 11. We may have an appointment with Dr. Schulman in Brooklyn, NY on Friday (squeezing us in). Any advice how to get him there? Last time DH simply explained he was going whether it was on his own or he would carry him. Anyone else ever have to deal with this? As it is DS will probably have to wear DH's crocs as he hasn't worn shoes since February and they were tight then. We won't know until the morning of the appointment so that settles whether we work on this is advance or not. Thanks, T.Anna DS15

If you can, I would try Augmentin. At least you would be doing something while you are waiting. T.Anna

SurfMom, what a GREAT attitude! Wishing and praying for our 15 year olds to finish with this soon. T.Anna DS15

Didn't realize about Niccolaides. Just looked like she was close and helped SS. T.Anna

We just received our results this past Tuesday. It was expensive, but we really wanted to be sure that we were on the right track. T.Anna DS

I'm so sorry that you are going through this. The doctor is wrong and you need to find a PANS/PANDAS specialist. In south Jersey there is the doctor who helped Sammy Maloney, Dr. Catherine Nicolaides. Catherine Nicolaides, MD Elmwood Business Park 733 Route 70 East Building #2, Suite 201 Marlton, NJ 08053 856-983-6675 Augmentin XR is generally preferred over straight up penicillin. HTH, T.Anna

Anyone have any experience with this doctor? My neighbor just came back from neuro-opthomologist who thought this guy was great. Found nothing relating him to PANDAS. Thanks, T.Anna