Hashimoto's Encephalopathy?

[qannie47]

T. Anna, that acquaintance of mine who's daughter just received the HE diagnosis was not exhibiting typical symptoms either. She was actually dealing with an eating disorder and getting worse...mom pulled her out, because they were not listening about Panda's, and somehow convinced somebody to test for HE...

[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

[PowPow]

Is HE not accepted by some docs as a cause for psych symptoms? I did not realize that! I feel so naive

[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

[Dedee]

Just curious if you have done the 23andme? If so was your child positive for Hashimoto's? All of my chldren are +/- as am I. We have a strong family history. My brother and sisters are +/+ and both of my sisters already have it. Just wondering if that piece of it has anything to do with which kids end up getting this.

 

Dedee

[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

[Dedee]

If you run the 23andme raw data through the mthfrsupport.com site it gives a section on Thyroid. The CTLS4 (rs231775) is "linked to Hashimoto Thyroiditis". This is the SNP that my family is +/- for. So I wonder if I should have them checked. Especially my daughter who I can't seem to get stabilized despite multible antibiotics, 2 IVIGs, and methylation treatment. As I said though, my sisters and my brother were +/+ so obviously a higher risk. Not really sure. I guess I could ask the doctors to run the same tests your son had. Thanks for all the info.

 

Dedee

[JoyBop]

I would tend to think that autoimmune encephalitis would be more embraced by doctors since there is easily hard evidence for it. The MRI showing inflammation and the elevated blood tests. Pandas is so much more abstract and even though we have the moleculera labs they are still not fully accepted since pandas hasn't been proven yet. Encephalitis has been around for ages and any doc knows that when the immune system turns on itself it can attack any part of the body. So insurance coverage would be better, but I think the problem is that doctors aren't looking for this type of diagnosis. I certainly hope that research is done so that all of this can come out of the closet and we can start helping these families.

[4Nikki]

I wanted to bump this thread. Dr. T listed DD as possibly having HE. Her Anti-TPO was 89.4 with range being @<35 and Anti-TG was 131 with range being @<40 she also has very low Vitamine D and high liver levels. I read through the 16 clinical features and dd is probably for at least 12 of them. I aslo read something about brittle bones but missed placed the reference. I was thinking there is a link because I read Vitamine D is what is need to calcium production? We are going to start a steriod burst today. Does anyone have experience they can share because dd's scary symptom is rage and the only thing we dabled in was the progesterone cream which seemed to help but because of the flare this past month we hadn't gone completely there.

 

Joybop was wondering if you tried the motrin?, because we had lots of success the first 6 months with dd symptoms which turn to rages using advil cold and sinus. but just last week it started having the opsite effect and we turn to benadryl. I was thinking it might have to do with alergies.

[PowPow]

I wanted to bump this thread. Dr. T listed DD as possibly having HE. Her Anti-TPO was 89.4 with range being @<35 and Anti-TG was 131 with range being @<40 she also has very low Vitamine D and high liver levels. I read through the 16 clinical features and dd is probably for at least 12 of them. I aslo read something about brittle bones but missed placed the reference. I was thinking there is a link because I read Vitamine D is what is need to calcium production? We are going to start a steriod burst today. Does anyone have experience they can share because dd's scary symptom is rage and the only thing we dabled in was the progesterone cream which seemed to help but because of the flare this past month we hadn't gone completely there.

 

Joybop was wondering if you tried the motrin?, because we had lots of success the first 6 months with dd symptoms which turn to rages using advil cold and sinus. but just last week it started having the opsite effect and we turn to benadryl. I was thinking it might have to do with alergies.

4nikki,

if your child does indeed appear to have HE (clinically and with labs) I would strongly encourage you to consider going to aealliance.org and researching.

 

I know I bring up AE all the time to people on this forum & I am sure it gets annoying-- but my daughter, who so, so severely affected by this disease for over 5 years-- is now nearly symptom free. It is a miracle. PANS/PANDAS was the right general direction and those tx helped, but the further help she has gotten this year has brought her out of that .

 

I am very afraid that some people posting here are totally missing the boat on their children's illness and getting distracted with other possible causes.

 

I can share more privately, if you are interested, about what tx, where and who.

[tu4four]

Powpow.... My inbox is full, and I cannot seem to empty it until I get time to get on my computer....I really think this is probably a big part of my daighter's issue....she had a lumbar puncture in nov last year, and the neuro was very concerned about her high pressure, but after we saw the pedi opthamologist, and he said her eyes were fine, the neuro wrote us off. I kept trying to get results for viral bacterial testing, but I suspect they didn't even do that because it was like pulling teeth to get the 3 separate piece of info I got, and she kept telling me those were the only results she had.

 

Dd12's tpo was slightly elevated---of course, they blew that off because it wasn't outlandishly high. I have been avoiding doing steroids because she has/had lyme. Our art dr says he isn't seeing that in her now. I wonder if I should ask a local doc that works with us for a steroid burst. Where would you go from here?

[4Nikki]

Thanks powpow, I will try. I don't really care what name people give a condition. I only care that we help our children to get the right treatment. It seems to be a big deal to some doctors. I would most definitely like to shoehorn HE as the culprit to dd's condition because it looks more hopeful in treating than does pans. I will try to post updates. We are o nm our second day of the steroid treatment but I think it's too early to make any assumptions. Dd has gone into the first stage of her symptoms she has before a rage episode each day now but it has changed. We would usually first notice her verbal tic then the tic would increase in frequency followed by rapid eye blinking which accompanied negative behavior and progressed to being unawareness and then rage. Twice now she starts withe the verbal tic but now she is aware rather than unresponsive. It lasts about the same amount of time but so far that's it.

[PowPow]

Powpow.... My inbox is full, and I cannot seem to empty it until I get time to get on my computer....I really think this is probably a big part of my daighter's issue....she had a lumbar puncture in nov last year, and the neuro was very concerned about her high pressure, but after we saw the pedi opthamologist, and he said her eyes were fine, the neuro wrote us off. I kept trying to get results for viral bacterial testing, but I suspect they didn't even do that because it was like pulling teeth to get the 3 separate piece of info I got, and she kept telling me those were the only results she had.

 

Dd12's tpo was slightly elevated---of course, they blew that off because it wasn't outlandishly high. I have been avoiding doing steroids because she has/had lyme. Our art dr says he isn't seeing that in her now. I wonder if I should ask a local doc that works with us for a steroid burst. Where would you go from here?

I understand your fears about Lyme history and steroids. We had similar concerns. In my child's case- she refused all tx (she was completely nonfunctional) and that abruptly ended our 18 month foray in to Lyme care. Honestly, looking back, I am grateful it ended that way- there was so much questioning and pressure (self-inflicted and by well-meaning, but ill-informed people on the internet) I thought I might kill my daughter by giving her steroids. Once she refused her PICC care and oral meds, we were done with it. There was no decision to be made on my part- we were just done.

 

Well, you know what? when we finally got steroids in her (high dose- for a month, Dr L) with in 10 days there were dramatic improvements. Dr L brought my child back and kept her there- with a series of interventions, but we needed more consistent, hospital-based care (though it is outpatient) and accurate diagnosis.

Please, I beg you, if you have treated lyme in a reasonable fashion- move on.

You could possibly be missing a huge factor in healing for your child.

 

Secondly- I saw the aealliance.org Grand Round video and contacted the doctors in it- that was just over one year ago & my child has since been diagnosed with another autoimmune condition. She is nearly symptom free. I am not exaggerating. She has mild OCD and anxiety, small tics. However, she just finished 10th grade, has a job, exercises daily, smiles and even is beginning to help around the house.

She was living in a PANS since Aug 26, 2008.

 

I have another daughter, who had PANDAS- by definition.It became just as severe as our child was- for about 6 weeks (had pex, ivig, oral steroids a few times & 3 weeks at USF) she is now 100%. I do not doubt that PANDAS is a subset of AE. We did not test our second daughter for lyme. It was not worth the heartache, headache and confusion that path offered. I am so happy for those who have found healing this way. But PLEASE consider steroids- or get your child to the docs in the AEAlliance .org Grand Round Video--Duke's Pediatric Neuroimmunology Clinic.

 

4nikki- I would agree that two days is too early to make an assessment, but glad there may be some improvement. Secondly, if your child has HE (or another form or AE) your life (financially, getting her treated, taken seriously, etc) will improve greatly if you can get an accurate diagnosis and treatment at a first-rate facility. Please also consider the Neuroimmunology clinic at Duke.

 

 

I have friends who travel from PA, FL and even further for their excellent care. Again, if you would like to PM me, I can explain more.