susieq22
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Posts posted by susieq22
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Thanks for sharing your story.
Anyone have specific advice on how long to keep a kid home from school after IVIG? She'll be on Zithromycin when she goes back and I have some hand sanitizer that supposedly lasts for 24 hours, but I don't want to send her back too early and then have to wonder if it was too soon.
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dasu,
Yes, we've tested via labcorp, Igenex and iSpot- all negative. I've read old posts that for many kids the 4-6 weeks post-IVIG can be rough as the immune system heals. I've seen the term "turning back the pages" used to describe old symptoms re-surfacing and worsening of everything.
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My 11 year old daughter is experiencing a significant increase in PANDAS symptoms post-IVIG (2 weeks post). We are still giving ibuprofen which takes the edge off, but it's still really rough. OCD thoughts and tics are increased over baseline. She's also depressed which is a new symptom for her.
Any experience with what has helped your kids would be very much appreciated.
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I know this is an old thread, but I'd like to hear more input. My daughter had IVIG last week and is feeling physically well and her PANDAS symptoms are the same. I'm worried about sending her back to school to get re-exposed to strep and every other thing out there.
Our doctor says that she doesn't keep the kids out of school and they usually do fine, though some need a second round of IVIG. I'd be interested to hear what others think or have heard from their PANDAS doctors.
Thank you!
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My 11 y.o. daughter has been battling PANDAS for about 6 years now and we finally did IVIG yesterday and the day before at 1gm/kg each day. She tolerated the infusions very well, but about 2 hours into the infusion on the second day, a dark cloud moved over her mood. Her main PANDAS symptoms have been things I think of as related to elevated dopamine- tics, intrusive thoughts and some OCD. She's never really exhibited much depression- maybe a little on occasion, but usually she's happy and goofy (high dopamine again).
Today she woke up with a headache and has been very depressed all day. She says that she doesn't want to do anything that she usually wants to do and that she's worried that she may want to die. Her usual favorite TV show which usually make her laugh all of the way through, cannot bring even a smile. She's also quite angry which isn't completely new, but haven't seen it in a while.
She's been on ibuprofen and benadryl throughout the infusions and today. How many have seen this intense depression? Is it related to the dopamine receptors losing their autoantibodies? This is worse than the PANDAS symptoms!
Any advice would be great.
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Bloody stool is something that should be checked immediately- really, I urge you to have her checked now (today).
If she is on antibiotics, or has been recently then there's a chance of c.difficile colitis which can extremely serious and sometimes fatal.
Sorry, not trying to scare you, but bloody stool is very serious.
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So my child is:
+/- for the CBS C699T,
-/- for the other two CBS mutations,
-/- for SUOX
How impaired would her sulfur tolerance be? I don't even know the symptoms of sulfur intolerance.
Thank you!
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You'd look at your son's CBS and SUOX status as the biggest indicator of sulfur tolerance.
So my child is:
+/- for the CBS C699T,
-/- for the other two CBS mutations,
-/- for SUOX
How impaired would her sulfur tolerance be? I don't even know the symptoms of sulfur intolerance.
Thank you!
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I'm sorry you had this experience. He was helpful to us in the beginning of our PANDAS journey (nearly 4 years ago) because he was willing to do a phone consult and help us out until we could see our local PANDAS doctor. Then last year, I consulted him again just to see if a fresh look at my daughter's case would bring about any new ideas or uncover immune issues that needed treatment. He ordered thousands of dollars in tests, but did not follow through on any of them. I bugged his office constantly, and they just simply didn't respond. I didn't have the money to spare either....
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When taken orally, it is not absorbed into the bloodstream- it stays in the GI tract. The most common use is in it's IV form, where it is definitely "big guns" with many side effects and toxicity. My daughter has been on the oral capsules and has done well on them.
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I was researching other CBD sources and came across one that says it is made in the USA, BUT it states it is legal in all 50 states. Is this possible?
1. Hemp is not legal in any of the 50 states, so far as I know.
2. Cannabis/Cannatonic are only fully legal in a few states, and medically legal in a dozen or so more.
3. My state allows no form of Cannabis/Cannatonic period.
This CBD oil must be made from Cannabis/Cannatonic for it to be legal in some states, since hemp is illegal in all states. Since Cannabis products are completely illegal in my state, how can this be legal in my state? More asking out loud than anything. I would ask the company this directly, but it would not surprise me if they lied to me to promote their product
. That I cannot afford.I sent a question in to them asking which of the three products they make the CBD oil from. I guess I will go from there. I cannot afford to do anything remotely illegal.
ETA: Is growing hemp in the USA illegal? I had always heard it was, but now as I research this, I am unclear...... If I find a clear answer, I will post back. Research never ends......................
Mayzoo,
Hemp and Marijuana are quite different. Hemp has no THC and is totally legal to buy (but not to grow as far as I know since it looks just like marijuana and would make DEA job harder I think). Go into a health food store- you'll find hemp nuts and hemp oil, and maybe even clothing made of hemp fabric.
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quannie,
I sooo agree with you. I think about this all the time. My PANS daughter is still able to function and hold herself together all day at school, but falls apart after school from the stress of the day. There are many days when she rolls around screaming on the floor at the thought of doing a page of long division (4th grade math). If I send her outside to climb a tree, play in the mud, or jump on the trampoline, the stress melts away. Back inside with the math, she's rolling on the floor again. Even many of her friends without PANDAS are over-stressed by all the work. It's ridiculous what's expected of kids these days....
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Thank you for posting this- I think I'll try switching to a high DHA product. I found a nice article on the subject at the Life Extension website:
http://www.lef.org/magazine/mag2008/jan2008_report_dhafishoil_02.htm
. That I cannot afford.
Do symptoms change after puberty?
in PANS / PANDAS (Lyme included)
Posted
My DD (almost 13) started menses about 6 months ago. Her PANDAS symptoms had been pretty mild and manageable until a few weeks ago- mostly anxiety/OCD which is worse at night. Her OCD consists of intrusive thoughts as the obsession, and telling me (mom) as the compulsion. She can't go to sleep until she has purged her brain of all of the bad thoughts and I assure her that everything is OK and she doesn't need to worry. Within the past few weeks, those intrusive thoughts have gotten much worse- more disturbing to her and more intense and frequent. Bedtime is a nightmare!
The strange part is that since puberty, her tics have become almost non-existent. Before puberty, she cycled through all sorts of tics. Before puberty, when PANDAS was bad, the main symptoms were tics, anxiety, and intrusive thoughts, but she never seemed depressed. In fact, when tics were bad, her seemed almost giddy she was so happy (high Dopamine?). Now, after puberty, the tics are gone, but along with the OCD that I described above, she seems depressed. Maybe it's because the intrusive thoughts are more disturbing and she often talks about how guilty she feels about the thoughts. She never mentioned guilt before.
She's had PANDAS since she was 5 (maybe before). Treatment has included antibiotics and IVIG one year ago. She seemed to get worse for many months after the IVIG, then slowly got better, though I'm not sure if she got better than she would have gotten without it.
Anyone else experience a big change in how symptoms present after puberty? I've read all the thread I could find about puberty, but mostly people were discussing whether symptoms would go away or not.
Thank you!