T_Anna

DS15 hasn't left the apartment voluntarily since last January. He is doing better cognitively, although he is still very stuck with OCD. We are thinking of starting home teaching. We are meeting with his HS school tomorrow and wondering what were some experiences people had. TIA, T.Anna

Tu4four, maybe run a blood tests listed under the thread "Going to Mayo Clinic" you might be dealing with a more aggressive form of autoimmune encephalitis. T.Anna

I think that PANDAS is a subset of AE, but it doesn't always produce the elevated SED in blood tests etc (if those tests are run at all). These other tests that PowPow listed are specific to "recognized" AE illnesses like Lupus, Hasomoto's Encephalopathy, etc. The real difference is the treatment. AE is generally treated with steroids, LD IVIG and sometimes (when necessary) immune suppressants. It does not focus on the infections, diseases that may have caused the AE and in some cases the infections are not checked for at all. I'm still learning, but this is how I understand the differences. T.Anna

http://www.pandasinfo.se/PANDAS_LeRoy_Controversy_False_Dichotomies.pdf This article also concludes the same thing. If there is an emotional component that opens the BBB and a strong strep strain, you can end up with an epidemic. T.Anna

I think the scary part for us as parents is to purposely cause lingering pain. IVs hurt most only when things are inserted (pic line, needles etc). I had adenoid removal when I was 14, because I could not breathe through my nose, at all. Post surgery, I had a nasty reaction to the anesthesia, and also had sores in my mouth. But I was old enough to understand that the pain would pass and I was REALLY excited at the possibility of breathing and speaking normally. I remember that as yucky as I felt I was so happy that things might be fixed. In retrospect, it's similar to how I feel each time we have something new to try with DS. I ride this optimistic/happy wave until we see that it is another microscopic advancement and not the big break. T.Anna

Sounds great. Keep us posted, impressed that your DS is ok with adjustments. T.Anna

A few more facts. My friend developed OCD at age 13 or 14. Her 12 year old son has tics and ADHD.

A friend has a daughter (15) with OCD for years. She has been improving with CBT, but the OCD has been waxing and waning. Last week she tests positive for strep and at my urging she had the pediatrician prescribe Augmentin. She is a small girl (5' maybe 90 lbs). She is taking 400 mg and the psychologist called my friend to say that her daughter's OCD is much improved. So my friend wants an article to urge her pediatrician to give her a prescription for 30+ days. Where can I find an article for her? What other suggestions would you make? TIA, T.Anna

Dedee, I just looked it up on 23 and me and his chances are typical for Hashimoto's Thyroiditis (DS is GG, not AA or AG). I didn't see anything for Hashimoto's Encephalopathy, which from the limited information I found, is not the same illness although it is usually related to HT. Personally (I have no medical training ; ), I think this is condition X which similar to H.E. but does not have the same clinical presentation. What I mean is that the lab numbers add up, but not the symptoms. This dx has come up recently in quite a few very severe PANDAS patients, so it may be more encephalitis related than thyroid related. Of course online, there are only a few hundred reported cases of HE, so maybe they don't really even understand HE fully? I have asked a few 'mainstream' physicians to look at DS's labs, I'll keep everyone posted if anything interesting is revealed. T.Anna

I guess I can test it out with a friend who is an pediatric endocrinologist at Columbia, but I hate always sounding like a nut : / The problem, will prob be compounded with the fact that we "test" positive but are lacking many of the clinical symptoms. As aggravating as the Wikipedia entry is on PANDAS, it at least has 26 references. H.E. only has 4 references. It's not a big issues, since we are going to try oral steroids and it's supposed to be "steroid-responsive encephalopathy." T.Anna DS15

Thanks 3boysmom, we had tried NAC a few times. It did not work for us, DS started to bang his head against the wall when he got frustrated (we had upped it to 4 pills s day). It might be that DS's mutations made it difficult to process. The integrative doctor I saw on Tuesday said that it could have been that the NAC was feeding into his yeast issue. Great suggestion, glad it helps your boys. Last night was a bit better, maybe because he was working on the computer and his hands were busy ; ) T.Anna

Qannie47, poor girl. I hope for her daughter and my son (as well as the rest of these kids), that this diagnoses helps get them the treatment and finally a "cure/remission". It has been going on for too long. Unfortunately, I don't think that the HE disease is anymore accepted by "typical" physicians than PANS, but I think the insurance companies like it better, so that's helpful : ) Fingers crossed! T.Anna

So DS is still very stuck in severe OCD. He. Only eats certain foods on certain days (especially Monday thru Friday). Lately he had been picking and twisting his hair, as well as pulling it out. Not sure why this bothers me more than biting finger nails, picking at toe nails or any other of the100 rituals/habits he has, but I find it very troubling. Sorry, just had to vent. I'm just hoping the minocycline keeps improving things (really reduced tic). And maybe the steroid will help too?! T.Anna

Yes, she mentioned the DMSA, but she is also very aware about DS's limitations because of OCD and is trying to work around things as much as possible. Unfortunately, we'll have to see what we can do with supplements with things the way they are at the moment. I think it will take more of a comprehensive autoimmune encephalitis protocol to help heal DS (as is evidenced by the elevated SED and ACE numbers). T.Anna DS15

Airail95, I think that Duke found this in a few cases and now Dr.T is finding it in some of his severe cases. There are 4 ppl on FB who were recently diagnosed. T.Anna

Mama2alex, I believe that DS has had all heavy metals tested through blood test. We saw an integrative neurologist yesterday and she will be studying his labs. He never ate much fish and doesn't have any fillings, vaccines I was told no longer contained mercury?! But we'll see what she says. I think I can get him to do a urine test, but the stool sample prob won't happen. There have been many kids diagnosed with HE recently, it almost seems as though it was in some way related to the initial PANS. All these are kids who still have severe OCD like DS. I don't really care what they call it, I just want to hear some success stories : ) T.Anna

DS15's test showed the following: - Complement C4, Serum 45 high (normal range 9-36) - Antithyroglobulin Ab Thyroglobulin, Antibody 4.5 high (normal 0.0-0.9) - Antiotensin-Converting Enzyme ACE 85 high (normal 12-68) - Sedimentation Rate-Westergren 50 high (normal 0-15) - Comement, Total (CH50) >65 high (normal 22-60) - Thyroid Pereoxidase (TPO) Ab 32 High (normal 0-26) These results seem to be in line with H.E but DS doesn't have many of the clinical symptoms. His ACE rates are also very elevated as is his SED rate. The irony, he is in better spirits and mood lately. Singing again, but still very stuck in OCD. We will try oral steroids tomorrow to see if it helps. We think that the minocycline was helpful too. T.Anna DS15

So happy to read this!! T.anna

Seems that DS's numbers are indicative of Hashimoto's Encephalopathy. Anyone have any experience with this? T.Anna DS15

I met with a neurologist (md) who specializes in an integrative approach. She explained that it is important to understand why DS is so susceptible to illness and that based on DS's 23andme results she will decide how to start helping his immune system. She wanted a stool sample, but was completely understanding that his OCD probably wouldn't allow that. She treats PANDAS and Autism as well (I blv she also does phone consults). Hopping this helps speed things along. T.Anna DS15

He is prob 120lbs. We tested positive at home. We just switched ped so i will call tomorrow am, if i cannot get him there, I may bring him to urgent care so that they can send it out. Thanks, T.Anna

My non-PANDAS DS13 just tested positive on two different rapid strep tests. I have 500mg Azithromycin, how many days are usually prescribed for 500 mg Azithromycin? Thanks in advance, T.Anna

3bmom, we have all 5 (ppl) been tested. We called two vets (we have cats) and told that only dogs can carry/get strep. T.Anna

That's what I thought, but figured I would post anyway and see if I was missing an option. T.Anna

We have done 3 HD IVIGs at home, they cost $10k each and were done through Walgreens infusion over two days. DS is about 120 lbs (15 years old). He didn't have many side effects just worn out. He won't really hydrate more and was ok. His one big complaint, things tasted funny afterwards. The first two IVIGs helped reduce rages and pupil dilation. The last ivig done post PEX seemed to really help, but he is still far from going to school, etc. we may try to do another next week (maybe 1g). It was ordered through Walgreens infusions. T.Anna