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Old 01-21-2007, 09:41 AM   #1
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Unhappy Hashimoto's encephalopathy anyone? PLEASE HELP!

Hi, I'm still pretty new to this board and my 5 yr old daughter was diagnosed w/autoimmune thyroiditis (hashi's) on Friday. I'm grateful that her diagnosis came easily and that she is receiving treatment. This post is about my older 10 yr old daughter. She has had uncontrolled seizures since 6 months of age and been in status epilepticus many times for up to 4 and 6 hours. While I was reading about Hashimoto's thyroiditis I came across Hashimoto's encepholpathy and my jaw must have been on the floor. My daughter has virtually every symptom of this rare disease including progressive mental decline, seizures, tremors, fatigue and more. She is currently on very massive doses of anti seizure meds which include 2500 mg a day of Keppra (yes,,2500!), 75mg a day of topamax and 250 mg a day of trileptal. Yet her seizures are still not controlled. She had one at the grocery store yesterday afternoon after having a piece of gum that was LOADED with sugar. Then about 1 and a half or 2 hours after supper she had an episode of severe fatigue (couldn't stay awake), headache, and confusion. I now know how important the blood sugar is in combination with these diseases and I tried to check her blood sugar but it scared her and after 3 attempts I gave up. I would love to hear from anyone that has or knows anything about HE. From what I understand you can have the thyroid antibodies and still have normal thyroid levels.. if anyone, anyone knows about this condition... please, please reply and I can give more details on her symptoms and condition but I am trying to keep this post somewhat brief. Thanks in advance.

 
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Old 01-21-2007, 10:46 AM   #2
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Re: Hashimoto's encephalopathy anyone? PLEASE HELP!

In the four years I've been on the board, I've seen only one confirmed case and one suspected case. It's a quite rare condition... only a dozen or so confirmed cases in the US; but as most things concerned even remotely with thyroid, probably vastly underdiagnosed. This may be a great catch on your part. Run with it! And good luck!

Here is the URL to the page at Thyroid Manager about the condition ~
[url] http://www.thyroidmanager.org/Chapter8/8__iodide_metabolism.htm [/url]

and here is the URL for the page with results of an Advanced search here on the subject ~
[url] http://www.healthboards.com/boards/search.php?searchid=1342540 [/url]

 
Old 01-21-2007, 01:33 PM   #3
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Re: Hashimoto's encephalopathy anyone? PLEASE HELP!

Thank you so much for the quick reply. I looked at the first link and it's very, very interesting and helpful. The second one would not work for me though.

[url]http://www.healthboards.com/boards/search.php?searchid=1342540[/url]


I want to say thank you, thank you sooooo much for your words of encouragement. I know that I have nothing to lose by "running with this". I feel like everyone around me thinks I'm losing my mind at this point. lol... I just believe that I have a gut feeling and I have to follow it, I'm her mother and it's my job.

 
Old 01-21-2007, 05:20 PM   #4
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Re: Hashimoto's encephalopathy anyone? PLEASE HELP!

I'm sorry about that URL... Don't know what happened. Use the Advanced Search feature yourself and use "encephalopathy" as the keyword. You should get results there.
Please be sure to let us know what happens with your daughter. I wish her and you all the best.

 
Old 01-22-2007, 10:52 AM   #5
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Re: Hashimoto's encephalopathy anyone? PLEASE HELP!

Hi Ms. Cozzy,

While HE is quite rare, it does tend to have a distinct signature on EEG. Is your DD in the care of a pediatric neurologist, and has she had a recent EEG? The little I know about HE suggests that often the disease can be controlled with steroids like cortisone/Cortef/hydrocortisone or their synthetic analogues, which can sometimes be weaned to relatively low doses. ...

But I wanted to mention something else. Since you have one child w/thyroid disorder already ... has your family been tested for celiac disease/gluten intolerance? In celiacs & other kids with gluten intolerance, there is a much higher rate of childhood thyroid disorder. While that does not necessarily mean that your child or children are celiac, it may be worth checking into.

There are a number of neurological manifestations that can present with uncontrolled celiac disease, the most common being epilepsy.

Is your child a type 1 diabetic -- has she been evaluated? If her blood sugar issues are triggering seizures, I would wonder. Celiac disease/gluten intolerance is a factor in some T1DM. This has come to light in research only recently.

When gluten intolerance or celiac disease is found to co-exist with epilepsy, it is relatively good news. CD/GI can be controlled with a strict diet & lifestyle that eliminates all contact with, & ingestion of gluten. The beautiful bonus is that the epilepsy almost always becomes controlled on the diet, whereas often pre-diet the seizuzres are typically very difficult to control even w/large doses of AE meds.

More than one family with a child poorly controlled on AE meds has found that a gluten-free diet turned things around. This is not understood in America by the vast majority of doctors, even the neurologists, but if you search gluten and seizures together, you will pull up some interesting research. IMO this is not a scam. Nobody's making money off it -- and THAT is the main reason it will take docs in America a long time to catch on.

Epilepsy is a complicated disease, and there are many potential causes. I cannot be certain that gluten is a factor in your child's seizures, but it might be worth considering if you have not already done so. A gluten-free diet, done properly, poses little harm to most children. The families whose children have been able to eliminate AE drugs, or to reduce them & stabilize, are very strong proponents of getting the word out about the gluten-brain link.

Nobody loves unsolicited advice. I hope you will forgive my off-topic intrusion ... the triangulation of symptoms here was more than I could bear to ignore.

Best wishes to you & your family.

 
Old 01-22-2007, 02:09 PM   #6
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Re: Hashimoto's encephalopathy anyone? PLEASE HELP!

Nobody loves unsolicited advice. I hope you will forgive my off-topic intrusion ... the triangulation of symptoms here was more than I could bear to ignore.

Best wishes to you & your family.[/QUOTE]

Lol... thank you elmhar for your advice. I do consider any and all possibilities and do appreciate any advice that I get. My daughter was seen by pediatric GI doc at Mayo one week ago and I do know that he ran a test for celiac. She has also had a colonoscopy a while back. I will definately take the time to read up on this and as far as the blood sugar goes it is a very good question. My daughters glucose has often come back high but no, she's never been evaluated for it to my knowledge. They always tell me it's high because of the seizure, I know that can be the case but still not sure why they wouldn't look into it when she hasn't had a seizure? Currently, I am waiting for a call back regarding an Endo consult.

 
Old 01-22-2007, 08:20 PM   #7
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Re: Hashimoto's encephalopathy anyone? PLEASE HELP!

Sounds like you are right up there, Mom Good for you! I do hope something can be found to turn your DD's situation around.

Best wishes.

 
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