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Update - Hashimoto's & school


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A brief update. In September we decided to see if DS had any co-morbid autoimmune encephalitis conditions. His ACE levels & SED rate were high (SED was/is 50) 0-32 is normal range. His thyroid antibodies were high and indicative of Hashimoto's Encephalopathy.

 

Around Christmas we saw the most positive signs to date (since January 2013):

He helped me clean up and store all his hoarding

He gets up more

He eats different things on different days and makes his own food (eggs, burgers, cookies, etc)

He changed his clothing more frequently

He talked on the phone more

He stopped many bathroom rituals

SLEEP IMPROVED! He started falling asleep every night before midnight (altho this can be because thyroid too high as well)!

Hardly cries, rages.

 

This was after high dose steroid taper (80mg) and an HD IVIG (#4) on December 13.

 

Since then we have somewhat plateaud. We did IV steroids last week (1/8-9/14) and he got of the bathroom faster (14 hours as opposed to over 72 in December).

 

We ran numbers and the steroids seem to have lowered his ACE rates, but his SED is still 50. His thyroid antibody numbers have also risen. In addition his TSH, which was dipping since this flare beagn and ended up at 0.010 is now over 7 (way too high), so we have added thyroids meds.

 

I just bought the book
Understanding Hashimoto's Encephalopathy (book of personal experiences) and it sounds like many of our kids.

 

We will probably do HD IVIG #6 this week, since I feel we saw the best results in mid December from the last one.

 

School Update:

I gave up on our school and they backed off their CPS craziness.

I enrolled DS in two courses at Laurel Springs online and DS seems almost excited to try learning science and math again (they have a 30 day money back guarantee and semesters start from enrollment date any 10 months).

In addition, I found that kids over 14 do not necessarily need schooling as was established in the case Wisconsin v. Yoder (an Amish family), so I'm not too worried about that part.

 

We definitely see a saw tooth progress and are still contemplating immune suppressants which are also used to treat HE patients, but I still am hesitant. I heard that a boy around DS's age received Retuxamb (at Mayo) and went into total remission, but the B-Cells (I think I'm saying this right) started coming back and so did the PANDAS symptoms.

 

We just added back the oral steroids as Dr.T thinks we plateaud when we stopped oral steroids after the IV and the steroids. We hope that the thyroid med will help too since thyroid issues can cause many OCD symptoms too.

 

There is a concern about DS's liver with all the steroids so we will take blood again this week and look.

 

What DS is taking: Augmentin, Valtrex, Minocycline, Flagyl, Nystatin, Prednisone (tapering down at 40), Thyroid (cannot remember name) & Supps: Japanese Knotweed, Olive Leaf Extract

 

Vitamin D - DS's 25-Hydroxy is 13.3

DS has always been in a bad mood when taking D3 supplements. This time we also measured CALCITRIOL (1,25 di-OH Vit D) which is the active use of vitamin D in the body (from what I understand).

DS's levels were normal which the doctor said is quite common is PANS kids...they have low levels, but are believed to use it functionally, and more needs to be studied in relation to vitamin d.

 

CALCITRIOL (1,25 di-OH Vit D) is 38.5 normal range is 10.0-75.0

 

That's about all I have right now. His Coxsackie numbers are still at 8, His mycoP is still high as is EBV, but strep is finally under 200 (182), everything seems to be trending down except the thyroid stuff.

 

Thanks for reading this far.

T.Anna

 

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It sounds like great progress all around!!

 

I've been dealing with Hashimotos since I was 16. I have learned a few lessons along the way. My biggest tip is to only use the name brand Synthroid. The generic brand has a very inconsistent dose and there have been many manufacturing problems due to the very short shelf like of the medication. I take a dose that an elephant would take 300 mcg. The starting dose is 25! I have to take two 150s bc they don't even make a large enough dose for me. I weigh 125. In any case, I completely call off a cliff anytime I have ever tried generic so I would recommend to stick to the brand name even if you have to pay a little more. It takes 6 weeks for the bloodwork to show change with each dose you add, so make sure you have his blood monitored regularly, but not closer than every 4-6 weeks bc it is slow to show change. Its one of those meds you can't afford to miss because symptoms can come back within 24 hours and she. I miss a dose and can take days or weeks to get back on track. Granted, I have a severe case, but I wish someone would have been able to tell me all these things years ago.

I hope the new homeschool works out! Please keep us posted.

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We are taking the generic, I'll call and ask

To switch. DS is on 50mcg, we'll see what happens. Last night he was still awake at 2 am so it might have had an effect already since we haven't changed anything else.

 

I'm still trying to understand how all this works. I'm still on the prologue of the HE book.

 

T.Anna

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Just a thought, but maybe pandas kids need to stick to the start low and to slow rule even for these types of meds. Did he always have trouble sleeping? Typically if your thyroid is over stimulated you may have insomnia, heart palpitations, and other symptoms of being revved up. I know I always mend to change in very small incriments because I'm so sensitive to change.

 

To a google search on synthroid vs generic. You'll see a bunch of research showing that there can be quite a dramatic difference in what each pill delivers. If he does seem to have symptoms from the med you might ask if the doc would start at a lower dose and increase it every two weeks if needed. If that's not tolerated, try 4-6 weeks. I wonder if there are any pandas savvy endocrinologists?

 

When my tsh was in the 60s after I had my first baby, I could t even speak. Words came out but I made no sense. I could t read, count change, find keys or my car in the parking lot, and would find myself in places and. It know where I was or how to get home. It was very scary. It could have been HE but I never got that dx. Just severe thyroiditis. I never had psychiatric issues but my memory and cognitive ability were completely shot. If you have any questions I might be able to help with, please feel free to ask.

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I was told to always take the thyroid meds in the morning, as they can keep you up if you take them later in the day. Also, take away from calcium and similar supplements (probably Mg/Iron/Zn, is my guess) as that can interfere with absorption.

 

 

We are taking the generic, I'll call and ask
To switch. DS is on 50mcg, we'll see what happens. Last night he was still awake at 2 am so it might have had an effect already since we haven't changed anything else.

I'm still trying to understand how all this works. I'm still on the prologue of the HE book.

T.Anna

r

Just a thought, but maybe pandas kids need to stick to the start low and to slow rule even for these types of meds. Did he always have trouble sleeping? Typically if your thyroid is over stimulated you may have insomnia, heart palpitations, and other symptoms of being revved up. I know I always mend to change in very small incriments because I'm so sensitive to change.

To a google search on synthroid vs generic. You'll see a bunch of research showing that there can be quite a dramatic difference in what each pill delivers. If he does seem to have symptoms from the med you might ask if the doc would start at a lower dose and increase it every two weeks if needed. If that's not tolerated, try 4-6 weeks. I wonder if there are any pandas savvy endocrinologists?

When my tsh was in the 60s after I had my first baby, I could t even speak. Words came out but I made no sense. I could t read, count change, find keys or my car in the parking lot, and would find myself in places and. It know where I was or how to get home. It was very scary. It could have been HE but I never got that dx. Just severe thyroiditis. I never had psychiatric issues but my memory and cognitive ability were completely shot. If you have any questions I might be able to help with, please feel free to ask.

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I always take mine very late at night. The important part is that you have to take it on an empty stomach, at least one hour before or after food. I need my coffee the minute I wake up so that doesnt work for me. I have never had a problem not being sleepy, but as with all meds. If you take it with food or too close to meals, or even with tums or certain other meds you may not even get its effects.

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Interesting about time to take the meds. On the bottle it says only in the morning, I will ask for another prescription of the name brand.

 

Today is a down day. He was stuck in the bathroom again yesterday and I'm starting to lose faith that we know what we are doing : /

 

T.Anna

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Thanks T Anna. There are so many ways to handle the medication. Let me clarify.

1- it doesn't matter what time you take the med so long as it is on an empty stomach and not taken with any other meds or supplements. Also should be take. One hour before food. I find late at night is the best time for me.

 

2- every brand (including generic brand) has its own unique dosing issues. Synthroid sets the standard. With that said, if you stick with a specific generic, you should be ok, but realize you may require different dosing if you switch brand. Many insurance cos do not allow you to specify which generic so this is another issue as you may be given whatever was cheapest and on hand on the day it was filled.

 

With that said, I could not get my thyroid under control with Levithyroxine even after many months and increases in dosing.

 

Other symptoms of hypo thyroid I have had, chronic hives and rashes, loss of hair (I have so much you would t notice but see tons on floor in bathroom and tub) thinning of eyebrows, difficulty choosing words even though in my head I am aware of what I am trying to as and that wrong words are coming out, quick to loose train of thought, confusion (aka. Brain fog) sleepy, lethargic , feeling down in the dumps, cold when others are warm. Just to name a few.

 

You can also ask to supplement with cytomel. Its hard to come by as they always have manufacturing problems but its a good support.

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There can be a connection. Dr. T calls it Pans+, it describes kids who have prob had pandas for years and years and it went I diagnosed (and untreated), the end up getting another autoimmune illness. I'm probably not describing it accurately, you can read it on his blog.

http://pandasinstitute.org/blog/2013/10/10-9-2013
Category F is pans+

There is Hashimoto's thyroiditis and Hashimoto's encephalopathy you can have one without the other HE is an AE illness and what my son has.

T.Anna

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T Anna thank you for Posting that! Dr swedo herself told me my son has PANDAS PLUS and I'm still kicking myself for not asking her what that exactly means. My child has had very severe and complicate GI issues in the last that are autoimmune and seemingly creeping back in. Perhaps the plus could mean any other autoimmune complications.

 

That post was awesome to read, thank you!!

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  • 5 months later...

I was told to always take the thyroid meds in the morning, as they can keep you up if you take them later in the day. Also, take away from calcium and similar supplements (probably Mg/Iron/Zn, is my guess) as that can interfere with absorption.

 

lfran- was wondering if I could get your take on hypothyroidism? If you could share your experience? Thanks in advance! Philamom

 

 

We are taking the generic, I'll call and ask

To switch. DS is on 50mcg, we'll see what happens. Last night he was still awake at 2 am so it might have had an effect already since we haven't changed anything else.

 

I'm still trying to understand how all this works. I'm still on the prologue of the HE book.

 

T.Anna

r

Just a thought, but maybe pandas kids need to stick to the start low and to slow rule even for these types of meds. Did he always have trouble sleeping? Typically if your thyroid is over stimulated you may have insomnia, heart palpitations, and other symptoms of being revved up. I know I always mend to change in very small incriments because I'm so sensitive to change.

 

To a google search on synthroid vs generic. You'll see a bunch of research showing that there can be quite a dramatic difference in what each pill delivers. If he does seem to have symptoms from the med you might ask if the doc would start at a lower dose and increase it every two weeks if needed. If that's not tolerated, try 4-6 weeks. I wonder if there are any pandas savvy endocrinologists?

 

When my tsh was in the 60s after I had my first baby, I could t even speak. Words came out but I made no sense. I could t read, count change, find keys or my car in the parking lot, and would find myself in places and. It know where I was or how to get home. It was very scary. It could have been HE but I never got that dx. Just severe thyroiditis. I never had psychiatric issues but my memory and cognitive ability were completely shot. If you have any questions I might be able to help with, please feel free to ask.

 

I was told to always take the thyroid meds in the morning, as they can keep you up if you take them later in the day. Also, take away from calcium and similar supplements (probably Mg/Iron/Zn, is my guess) as that can interfere with absorption.

 

 

We are taking the generic, I'll call and ask

To switch. DS is on 50mcg, we'll see what happens. Last night he was still awake at 2 am so it might have had an effect already since we haven't changed anything else.

 

I'm still trying to understand how all this works. I'm still on the prologue of the HE book.

 

T.Anna

r

Just a thought, but maybe pandas kids need to stick to the start low and to slow rule even for these types of meds. Did he always have trouble sleeping? Typically if your thyroid is over stimulated you may have insomnia, heart palpitations, and other symptoms of being revved up. I know I always mend to change in very small incriments because I'm so sensitive to change.

 

To a google search on synthroid vs generic. You'll see a bunch of research showing that there can be quite a dramatic difference in what each pill delivers. If he does seem to have symptoms from the med you might ask if the doc would start at a lower dose and increase it every two weeks if needed. If that's not tolerated, try 4-6 weeks. I wonder if there are any pandas savvy endocrinologists?

 

When my tsh was in the 60s after I had my first baby, I could t even speak. Words came out but I made no sense. I could t read, count change, find keys or my car in the parking lot, and would find myself in places and. It know where I was or how to get home. It was very scary. It could have been HE but I never got that dx. Just severe thyroiditis. I never had psychiatric issues but my memory and cognitive ability were completely shot. If you have any questions I might be able to help with, please feel free to ask.

 

Edited by philamom
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