T_Anna

Anyone have experience with this treatment? I'm looking into this for DS18 and I'm wondering if anyone has tried it since then.

Thanks. We had the second shot yesterday. The shots are very painful, but DS16 is a trooper and if it works then it'll. be worth it. Thanks again!! T.Anna

No lidocaine. The whole process was a bit if a mess. The pharmacy didn't give us a syringe/needle or sterile water. But it all came together at the last minute. Would lidocaine make it less painful? Do you think the pharmacy would sell that to me or would it need to be part of a new script? T.ann

Thank you to everyone for their advice and input. We had the first of two injections yesterday and while it was painful, it was survivable and the horrible pain passed about 15 minutes later. A few hours later he said he no longer felt it. Thanks again, T.Anna

Thanks everyone! Going to pick up the meds today and the nurse is coming Monday. Thanks 911m. I told DS16, and I think he's prepared. Thanks as always everyone!! T.Anna

Also curious as Dr.Harley was there I believe and I'm curious about his T&A study. Anyone? T.Anna

Has anyone ever done an IM of Ceftriaxone (intramuscular shot)? Did it help? DS16 had his tonsils removed two weeks ago and had "Enterobacter aerogenes" that showed it is responsive to IV or IM Ceftriaxone. The infusion company will only do IV to a port, so we are going with IM, but I heard it is really painful and wanted to see if I could find any feedback from fellow sufferers. I remeber Dr. Ohara talking about painful but very effective shot of abx. Anyone have ANY feedback?? Thanks as always, T.Anna DS16 - been through the "ringer"

This is a video from Dr.Latimer at the Italian conference. Ds16 had It done in 8/2013. It did help with some issues, but we think he may have gotten re-infected when he got home. The hospital stay is annoying, but the procedure itself is easy.

We went to see Dr.L last week and she recommended looking into a possible T&A for my DS16. Her thinking was that he didn't do well enough after PEX in 8/2013 because maybe he still had infections or his siblings still had strep (DS14 is PANDAS-light, but had titers of over 1200). She has just completed a study and they found staph in the tonsils of PANDAS patients, they also found T&A helped resolve sx even in kids who did not respond to IVIG and/or abx. I cannot find the study and verify that data, when I do I will link. We are going to see an ENT (and ID) on 3/10 or 3/11 and we hope to have some answer then about proceeding with 1 or all of us having T&As.

Please check the post "New Parents: Advice from the Trenches" you can reach out via PM to those moms and I'm sure they will respond. From what I've read, things can get worse before they get better. http://latitudes.org/forums/index.php?showtopic=23531&page=2#entry179328 We are also looking at Rituxan as an options T.Anna

Just tried to PM you about Retux, I sent an email, not sure if it's the right address though. T.Anna

How is Gary doing? T.Anna

Thanks LaurensMom. So are you back home? Ds16 will be happy that it's not a mandatory stay. T.Anna

LaurensMom, we are headed to see Dr.Latimer and see if Rituxan is an option for DS16 this Wednesday. Can you tell me how the Rituxan process worked? How many days? Inpatient/outpatients? How was it tolerated? We're also in NYC. T.Anna

Thanks so much for posting SurfMom, glad to hear about your success! T.Anna

Ophelia, I am so sorry you are going through this. Ds16 hasn't turned around with IVIG this last time either. I am really impressed that you are doing research and advocating for yourself. This is a horrible disease whether it's called AE or PANS/PANDAS. I wish I had a better answer for you. Stay strong!! T.Anna

Trying to avoid steroids and the doctor recommended I look into these supplements. Has anyone tried either? Any information is greatly appreciated!! T.Anna

DS14 had tons. We ended up cauterizing. Before that they were under control with AYR spray Gel (gel not the regular saline, since this way it stays up there). We did the cauterizing after it started getting in the way of his running with school. During the summer he often had to get out of The pool too. After the cauterizing his tics got worse, but abx helped those and we haven't had a nose bleed in months!

The PEX made Ruby worse. She wass left with no antibodies and no post PEX IVIG : / DS16 had PEX August 2014. Didn't help him as much as we hoped. T.Anna

Anyone have any information regarding Pituitary Tumors? We had an MRI scan on DS16 because he wasn't doing well and still struggling with erratic thyroid numbers and symptoms. A radioactive catscan only revealed thyroiditis. Dr. T suspected the pituitary may be the culprit. A MRI revealed a 3mm microadenoma on the pituitary. We are going to see a specialist, but wanted to know if anyone else had experience with this. Seems a pituitary tumor can cause OCD, Anxiety, depression, etc too. DS16's IgGs are super low too, so we are looking at another IVIG since he cannot go to school with these numbers (and his fatigue is horrible as well). Wondering if the pituitary can impact the IgGs as well. Thanks in advance, T.Anna

You may want to check the pituitary. One symptom of pituitary issues is change in menstrual cycle. DS16 hasn't been doing great after a huge break through over the spring and successful return to school. He has had ongoing thyroid fluctuations. The endocrinologist did a Radioactive Uptake Catscan which showed thyroiditis, but nothing trateable (needs to be hyper or hypo in the traditional endo world). Dr.T thought it might be the pituitary messing with the the thyroid hormones, we went for a MRI (with/without contrast) and a 3mm mass was found on the pituitary. It seems these are common, but they can also impact hormone production. We ran follow up hormone tests that showed elevated prolactin and low growth hormone. http://www.mayoclinic.org/diseases-conditions/pituitary-tumors/basics/symptoms/con-20028814 In the meantime another teen with OCD and growth issues has had an MRI that found a 4mm tumor. These tumor can cause neuropsych issues. T.Anna

Trying to figure out DS16s latest setback. Can it be that he is having trouble with CBS +/- and Meriva SR (curcumin)? He did poorly with Insitol, vitamin D and one more that escapes me at the moment. Thanks in advance, T.Anna

Sorry duplicate post

We tried CBD for DS16 last March 30. I put 25 drops of bluebird botanicals (CBD hemp Oil) into a capsule and gave it with the AM and PM pills. We didn't see anything until April 2 (2 days later) when he had a HUGE break through and started to really improve. Since then we recently switched to RSHO gold from HempMedX to see if it would help get us a bit further along (DS still struggles with OCD). We haven't noticed much improvement except it's much neater and maybe a little more helpful. We are using the length of the capsule. Since it's digested we started higher. We printed the FAQ from bluebird and discussed it. He does refer to it as his marijuana pill, but knows it's completely legal. I tried to get him to use the e-cigarette that they recommend on bluebirds but that was too much. Weight: interesting about appetite. Can you post the link to the article? DS16 definitely eats less nowadays (he has restrictive food issues). T.Anna

When I first read Cara's post I thought a grain of rice? I'm giving that and maybe it's too little?! Yes, a rice grain is equivalent to 25 drops and RSHO is much more concentrated. I just switched DS16 last week and I think it works better. The paste is also less messy than the CBD oil that always seemed to get everywhere. I noticed less catatonic OCD moments in the morning and no wet dream type situations, since last week. Still having trouble with OCD in the morning, but after calming down, maybe we're doing better than we think. T. Anna