SarahJane
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Posts posted by SarahJane
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We were on daily zith & at 4 months post-IVIg when my son showed positive IgG for myco p. He was losing most of his IVIg gains & starting new behaviors. We used 6 weeks of Biaxin, & he's back in daily zith again. Now we are at 7.5 months post-IVIg, and he is doing well.
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I don't want to make you any more upset, but those 3 shots are actually SEVEN vaccines.
I believe that it's likely the H1N1 shots at the end if 2010 that brought PANDAS out in my son (7). He got strep 2 weeks after his 2nd shot & went into exacerbation a month after that even tho' it took 8.5 months, another strep infection/exacerbation, 2 peds, & 1 PANDAS expert and to get the diagnosis. We did have issues when he was little too, which I'm pretty confident was undiagnosed PANDAS. But we are done with vaccines as far as I'm concerned. I need to make it official with whatever waiver I need to get. Boo to your ped. As far as length, it will vary. And not to freak you out more (sorry!), but subsequent exacerbations can get worse. My son's 2nd one was definitely worse than the 2nd. His flare post-IVIg want as bad, but we were also on a heavy-duty abx. Take care of you too. Hopefully, this illness will be short-lived in your son & an opportunity to "educate" your ped with something he should already know.
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My husband had a dog when we got married. I'd just graduated college & changed cities & it took a few months for me to find a job. The dog got used to me being home. When I did start working, she starting licking a place on her arm raw. EEK! The vet recommended some sort of anti-anxiety drug or acupuncture or another dog to keep her company. That's how we ended up with 2 dogs back then since we got our dog a puppy. They were sisters from different litters, & both had their own unique psychoses.
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Something interesting I stumbled upon recently. We just got a dog last week (7 month old solid black Aussiedoodle that is the cutest thing ever!), and I went thru a few very nervewracking days of thinking ds(7) might be allergic (face rash, arm rash, coughing, slight wheezing)...symptoms would occur mostly outside & clear up after a bath. Hmmmm...not how you'd think a dog allergy would behave & a skin prick allergy test a few years ago showed no reaction to dog. I put on my detective cap, which I rarely ever even bother to take off & traced it to the tennis balls we were using to throw for the dog. (Had remembered a previous reaction to the tennis balls a few weeks earlier that I'd missed thinking it was just a seasonal allergy thing.) I figured he had a slight latex allergy/sensitivity (which I knew he had a previous reaction to poinsettias that are part of that same family). He's not reacted to latex gloves, bandages, rubberbands or anything obvious tho'...I mean come on...why would it be easy to figure out something affecting a PANDAS kid?!
Anyway...here's what I found on a web site that made me think of past topics of conversation regarding PANDAS kids having issues at pools: "Note: Some latex-allergic individuals may react to chlorine and/or latex proteins released from swimsuits and pool items due to chlorine." Seriously...CHLORINE issues could be a latex allergy. Very interesting, eh? I found that statement on this web site under "sports equipment": http://www.latexallergyresources.org/topics/consumerProducts.cfm. Earlier this summer, we went to the pool & the chlorine was strong & put ds in a MOOD that evening despite an immediate bath when we got home.
Thought I'd share this random idea to make more wheels turn in the PANDAS Parents Universe that we all share.
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I don't have direct knowledge of EBV...just what I've read. I know I had high "past infection" titers back in the fall, & knowing what I know now, I suspect if we tested my ds that he'd show a past infection.
I will say that it wasn't until ds had his tonsils out at 4.5 (had adenoids out at 3) that we got a respite from ongoing illnesses that had been going on since he was 2.5 & got his first ear infection. Then he had sinusitis a lot...never tested positive for strep during that time tho'. The break from illness lasted 1.5 years until he tested positive for strep & then PANDAS hit a month later. (Actually, as you know, it had VERY likely hit when he was 2.5, but it wasn't diagnosed until he was a few months past 6.5.) So, you can still get strep without tonsils/adenoids. My dh is 43 & has no tonsils & still gets strep.
Actually our family dr (ex-family dr now)...wouldn't even test my dh because he believed he couldn't get strep without his tonsils. He'd given him Tamiflu to take until the pain continued & hubby got tested/dx'd at urgent treatment a few days later. Grrrr. -
You are to be commended for your desire to volunteer. This is definitely something you can discuss with your mom and anyone that organizes volunteer activities. While many people want to do the up front and visible activities involved with charities, there are likely A LOT of behind the scenes jobs that need to be done. I'm sure any organization would be happy to have any help you could give them.
P.S. I got that book a few months to re-read. I know it's going to make me mad again. Probably madder this time since I've done all this other research.
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Already signed up & psyched for the Canary Party.
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I am on my phone, so I don't have the article (& am not sure I have it saved or had just printed & if it's printed then I have no idea where it is). My son did this when he was little. Not sure when it started, but maybe when he was 2-something. Very fitful sleep...moved all over...very hard to sleep with when we traveled. It was something we talked to the dr about when the autism questions started at 2.5 (no diagnosis). He also snored, so we had his adenoids out. Did help with the snoring but not the movements. We tried to do a sleep study but that was a bust. A year later he was still doing it. I took him to the dr after he punched me in the face while we were on a trip & all sleeping in a king bed. He was asleep & I was looking at him like a mom does her child & BAM his fist came over at his me in the nose...hard. I checked him out & found enlarged tonsils & took him to the dr & asked about a tonsillectomy & went to ENT. He stopped doing it after tonsils out, & they were huge & gross.
Okay...retrospectively, after our PANDAS diagnosis (1.5) years after his tonsillectomy & after 1st dx'd strep throat), I got to thinking about how his early issues were likely early onset PANDAS. I Googled it somehow and found something about nocturnal tics that can occur with Tourette's. We were checking for apnea with the sleep study since he did still snore some...there had been a question of seizures too (nope). Briefly we talked about Tourette's but dismissed it because he was so young. Google it and see if you can find that. I don't know if that's what it was for sure, but it does make sense. He doesn't do it anymore (tho' he was a little jumpy in his sleep the last time I stayed at my sister's, but I think he also had an allergy there since she had some room fresheners going that we had to turn off while visiting.)
Sorry, this was so rambling...am on my phone. No way to go back up & edit, but I wanted to share it as a possibilty.
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I need to order a copy of Blinded by Science. Didn't get thru it all on the web. It covers EMF, right?
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This is terrific news! We're all celebrating with you.
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My son was 6 & 46lbs. We suspect he had early onset but we didn't figure it out until the BIG exacerbation hit. (If you pull my string, I'll say that last sentence again. I feel like I say that in every post on here.). If we'd found it when he was younger, & he had been as bad off as he was when got the dx when he was in 2nd BIG exacerbation, & it had been recommended, then we probably would have done it. But that's me supposing. We were at a point where it felt like all we could do, & it'd gone untreated so long & we lost so much time & had dealt with skeptics when we did find it until Dr K. Maybe researching other conditions that use IVIg in young ones could help with the decision.
P.S. We are 6 months post-IVIg & while we've had flips & bumps & treated myco p for 6 weeks, we are in a good place. Still some stuff, but it's so minor compared to before.
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I am glad to hear this from you. Good for your girl & good for you!!!
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First, I agree that it does sound like PANDAS. I also agree with going go an expert. We drove 8 hours from Lexington, KY to see Dr K & we did IVIg. Today is actually the 6-month post-IVIg point, & while there have been flips, bumps, & a 6-week treatment for myco p, right now we are in a pretty good place. Some OCD, age regression, etc...but WAY better than 6 months ago.
And I had 2 local drs tell me it wasn't PANDAS...took Dr K less than 15 minutes into our phone call to call it PANDAS. And maybe you've seen this in your dd, but subsequent exacerbations can continue to get worse...I'm sure you don't want a third one. -
My ds 7 takes fish oil. We're 6 months post IVIg. I have had times when he is in a flare that if I halt it for a while, it seems to help. Then I add it back in when I think I can. Don't know why that is tho'. We use Minami Nutrition brand MorEPA. They're junior capsules & strawberry flavored. They're mostly Omega 3 (high EPA per the name) with a bit of 6 & 9. I do 1 capsule vs the dosage of 2. Full dose seems to have an adverse effect...not sure why.
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My son is 7 so I've not got the direct experience. He's fully vaxxed for now, but I'm pretty much done with them & can't imagine giving him another shot. (Someone please help me stop reading & researching! LOL). ANYWAY, you could try getting a test to see if he's still protected with the antibodies for varicella & pertussis (not sure about the meningitis). Another option would be getting a waiver, which depends a lot in your state. I'd be the same as you if I were in your shoes. Would not want to rock the boat. Good luck! I look forward to seeing what others say.
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I'm so sorry!!! I am very surprised they stopped all meds cold turkey. There should have been a taper. Now you're not going to know what is PANDAS & what is psychotropic withdrawal. I would, & you probably have, really question this. My fear would be that they're going to induce behaviors that will be misinterpreted...especially since they already misunderstand PANDAS. I'm not trying to alarm you any more than you already are, but I also don't want them to set you up. Any MD knows you don't stop psych meds all at once. (((((HUGS)))))
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I don't know that there is a cutoff age for treatment. There was talk of Dr K doing IVIg for older patients on a post a while back. I'm on my phone & can't search easily but you could look or maybe someone else will have thaf info. (We see K for my 7 yr old son.). I have seen references to diabetes with PANDAS but no research that gives info. There was a post about diabetes on here recently too. Good luck to her. One thing I would wonder is what treatments/therapies has she tried & what was their effectiveness? That could help the clinical dx. Keep in mind her child may not have high titers and that does NOT rule out PANDAS. Other infections can also lead to PANDAS reactions (mycoplasma pneumonia, Lyme, etc...). PANDAS is a clinical diagnosis meaning a good PANDAS dr will consider ALL the symptoms & patient history vs relying on particular tests (there is no definitive PANDAS test).
(No Internet? I cannot imagine that. LOL!)
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My son doesn't want to get older/bigger either (his stance on this does shift some tho' & if we're talking about it & it's bothering him, I back off of it or divert his attention by saying something funny--humor works well with him). Says he will always live with me. (Ack!) I was just looking at some Facebook pictures and had one of him on his 5th birthday. I made the comment that the first thing he'd said that day was that he didn't want his teeth to fall out & how I'd probably overdid my talk about what he might experience at 5. He didn't start losing teeth until he was 6 & lost one last Aug & one in Oct or Nov & nothing since then. : /
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EBV is good advice! There's a rapid test (mono spot) they can do & run the blood. (I have one tonsil that is kind of wonky that I was feaking out about it back b4 my ds's Nov IVIg...they tested me for mono. My EBV IgG was high but I didn't really have other symptoms so I let it go. And my ND found other stuff wrong with me anyway back in Feb.) Might have them check for cytomegalovirus too. (They talked about checking me for that.) Maybe HHV6 too...I just read it can cause mono-like symptoms in adults. Have you run any gut samples to see what's in there. (I have strep in mine that we're working on digestion to handle it.)
((((((((HUGS))))))))
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WOW!!!
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Emerson, here is a ((((((((BIG HUG))))))))!!!!! I truly hate that you are going thru all this. What kind of pediatric psychiatrist can't be reached in what's clearly an emergency?! I guess the kind that prescribed the Celexa in the first place. I guess you'll be going off of it. Just be aware that even tho' you've not been on it very long, you'll likely still have withdrawal. When do you get outta school down there? Any way to move it up early with a doctor's note? Between this and the Lyme treatment & everything else, ya got a lot going on Girl. Here's another ((((HUG))))!!!
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Here's my thought, don't push on the standardized tests for now since it's causing worry. Apply no pressure. And if the scores don't reflect honors, then it seems like you have good evidence to fight for placement. If they do, and they probably will, then that's great. I should disclose that I think basing any decision of an individual student's academic future on a standardized test is ridiculous. I home school now, but last year when my kid was in kindergarten, his school had a song they taught to all grades that was about the cumulative achievement score the school was trying to reach. I thought that was disgusting.
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Happy Mother's Day to all the great Moms on here fighting for your kids. While I wish I'd met y'all under very different circumstances, I sure do feel lucky to know you now! All of you have helped me navigate this path we're on, and you have helped me uncover so much info I'd have never found going it alone. Thanks for all your sharing. (((((HUGS)))))
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I think it's going to get harder to get a regular tetanus booster since they're recommending DTaP boosters for adults now. ::sigh:: Tetanus shot supposedly contains one of the highest amounts of aluminum as an FYI. (I've traced my high Al level to my tetanus booster I got last summer and allergy shots I did last year too.)
Anyway, I'd skip the shots if you can. And definitely skip the Gardisil shot too...they're pushing those for boys now too.
I believe that it's likely the H1N1 shots at the end if 2010 that brought PANDAS out in my son (7). He got strep 2 weeks after his 2nd shot & went into exacerbation a month after that even tho' it took 8.5 months, another strep infection/exacerbation, 2 peds, & 1 PANDAS expert and to get the diagnosis. We did have issues when he was little too, which I'm pretty confident was undiagnosed PANDAS. But we are done with vaccines as far as I'm concerned. I need to make it official with whatever waiver I need to get. 
Question about vaccine shedding
in PANS / PANDAS (Lyme included)
Posted
Question about vaccine shedding. Had a play date today with 2 brothers & 1 had gotten a varicella/chicken pox vaccine last week. I know it sheds. Anybody know how long shedding lasts & what threat it poses to PANDAS kids? Seems I remember reading that FluMist can shed for up to 30 days. EEK! Do all virus vaccines shed that long? It just came out in conversation with the mom or otherwise I'd not have known. We are probably in contact with vaccine shedding folks, but ignorance is bliss. Right now we're seeing some random effects of what we think are seasonal allergies. (They started at the same time we got a new "hypoallergenic" dog, but I don't think it's the dog since hubby's not reacting & he is allergic.). Otherwise things are still going pretty well, but I'll deny saying that if you ask me (already knocking on wood!). Guess I'll be watching for signs of exposure now tho'.