T_Anna Posted October 2, 2013 Report Share Posted October 2, 2013 Seems that DS's numbers are indicative of Hashimoto's Encephalopathy. Anyone have any experience with this? T.Anna DS15 Link to comment Share on other sites More sharing options...
qannie47 Posted October 2, 2013 Report Share Posted October 2, 2013 This is a strange coincidence. An acquaintance of mine, who's ds had a Pandas diagnosis, just received the same diagnosis. I don't know what led them to that exactly. Does this change your overall diagnosis? Link to comment Share on other sites More sharing options...
PowPow Posted October 2, 2013 Report Share Posted October 2, 2013 (edited) You may have your answer , T.Anna!!!! Yes there is a forum friend with some experience. ... I cannot remember her forum name (now she is a REAL friend , so i cannot remeber her forum name;) P.m. you Edited October 2, 2013 by PowPow Link to comment Share on other sites More sharing options...
lfran Posted October 2, 2013 Report Share Posted October 2, 2013 I hope this leads to some real progress for you. How did you/they figure this out?? I was just reading about this earlier today, coincidentally. Link to comment Share on other sites More sharing options...
JoyBop Posted October 2, 2013 Report Share Posted October 2, 2013 I've had severe hashimotos since I was 16! And suffered from horrendous hives and facial swelling to the point of hospitalization. I used toget hives from a flare now I just loose my mind literally. My hair falls out and I don't know my children's names or where I am, where I'm going or where I've been. In the worst case when my tsh was in the high 60s I could not even speak even though I knew the words in my head. Could read or even find my way out of my own house. Very scary. I never considered it could have been encephalitis but I suppose it possible. Next time I get symptoms I will try Motrin and see if it helps. This could prove the theory at least in my own case. I have a lot of experience with the disorder and treatment but not sure of the relationship to pandas. I can tell you that only the brand name drug works! The generic gives a very inconsistent dose. Link to comment Share on other sites More sharing options...
airial95 Posted October 2, 2013 Report Share Posted October 2, 2013 Someone in the Florida group's daughter was just given this dx by Duke earlier this week. Link to comment Share on other sites More sharing options...
PowPow Posted October 2, 2013 Report Share Posted October 2, 2013 Joybop... has your daughter been thoroughly tested for this? Link to comment Share on other sites More sharing options...
Ebersolk Posted October 2, 2013 Report Share Posted October 2, 2013 What were her numbers? Link to comment Share on other sites More sharing options...
JoyBop Posted October 2, 2013 Report Share Posted October 2, 2013 I think my son was tested for thyroid and it was normal but not Dd. its very rare for kid to have thyroid problems but they do happen. Dd is now in full remission. We will be testing again in nov. I'm having my adrenal glands tested as well for some new symptoms I'm having. Interestingly low adrenal causes anxiety and depression....worth checking in the kiddos. I don't have those symptoms but have some funky things going on. tu4four 1 Link to comment Share on other sites More sharing options...
mama2alex Posted October 2, 2013 Report Share Posted October 2, 2013 I've read here and there over the years about a connection between Hashimoto's and mercury toxicity. T.Anna, has your son been tested for heavy metals? Mercury can come from amalgam fillings, fish, and vaccines (15 would certainly be in the window when they got too much mercury in the childhood vaccines). A genetic mutation in the methylation pathways could cause a problem with detox and allow the mercury to build up and wreak havoc. JoyBop, you might also consider being tested for mercury levels. Do you have amalgam fillings? An integrative doctor is the best bet for figuring out whether mercury is an issue for you. It can be hard to detect if you're not detoxing well. Link to comment Share on other sites More sharing options...
T_Anna Posted October 3, 2013 Author Report Share Posted October 3, 2013 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 Link to comment Share on other sites More sharing options...
T_Anna Posted October 3, 2013 Author Report Share Posted October 3, 2013 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 Link to comment Share on other sites More sharing options...
T_Anna Posted October 3, 2013 Author Report Share Posted October 3, 2013 (edited) 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 Edited October 3, 2013 by T.Anna Link to comment Share on other sites More sharing options...
mama2alex Posted October 3, 2013 Report Share Posted October 3, 2013 If he is 15, then he was vaccinated before the CDC ever announced they were going to phase out the multi-dose vials which contained Thimerosal (mercury). Once they announced in 1999, they did not recall the mercury containing vaccines, but used them up and phased them out over several years. The last of the mercury containing vaccines expired in 2003. Even now, there are still trace amounts in some vaccines and the full amount in the flu shot (unless you ask for the singe dose vial). You can't determine mercury toxicity through a blood test. You need to do a "challenge," which means giving the person a medicine that binds with heavy metals, such as DMSA or DMPS, and then testing the urine. If there are methylation problems, even this test isn't accurate. The methylation defects need to be resolved with supplementation before testing. If you decide to do the urine challenge, most DAN! docs know the right way to do it. I do think it's worth investigating further. JuliaFaith 1 Link to comment Share on other sites More sharing options...
T_Anna Posted October 3, 2013 Author Report Share Posted October 3, 2013 (edited) 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 Edited October 3, 2013 by T.Anna Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now