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Posts posted by SarahJane

  1. We have this too. My son (avid reader) stopped reading during his 2nd exacerbation last fall. Wouldn't let me read to him at bedtime either. After IVIg in Nov, he started up reading again. :) I can also tell sometimes how a day is going to be based on how long it takes for him to answer me or talk to me in the morning. We PANDAS Parents are better than covert spies in taking in the subtle cues of our kids. And we do it automatically without thinking about it. :)

  2. We were undx'd last year when my son was in kindergarten (did have an anxiety dx tho' that I always forget about because it wasn't that). I got our dr to give me notes to use as needed, & my son only attended half days. He did a bit better knowing he only had to stay until lunch (tho' the teacher still changed his color for something most days...just avoided the usual afternoon meltdowns). But with dr's notes the school shouldn't say much. Or you could try to add an absences accommodation somehow, especially since you're not coming back next year. Also make sure it won't affect her grade promotion/grades, but that may not matter if you work it out with the private school. Good luck!


    Also, in retrospect, I wish I'd just yanked my kid outta school completely when things weren't going well, but I was trying to make it work. It caused so much stress on our little family. And in his last 3 weeks or so of school, they took away recess & isolated him at his own desk & who knows what other emotional abuse I didn't see.

  3. That's great news! Dr. L will likely use that info (along with the Cunningham results...did you ever get to see those yet?). Steroids are usually used for diagnostic purposes, so it's good you had good results. Our son just lost some behaviors while the steroid burst was working...when the rages came back, we knew we'd gotten all we were gonna get. We had IVIg scheduled right behind it tho'. Good luck with the appt! Thinking positive thoughts for y'all. :)

  4. It would likely be affected by the quality if the lavender. The Tom's has natural fragrance/essential oils. I was also putting it essentially into my lymph system by using the deodorant. I do remember when my son was small & I used lavender wash & lotion that there were a few occasions where I sudenly became ill while putting him to bed after his bath. I believe I have a true sensitivity/allergy to lavender too that may also factor into my reactions to it. I did feel just horrible these past 2 weeks. So far today, I'm okay. Was okay yesterday until the evening tho'. Am hoping I'm in the clear today.

  5. Here's a discovery I had. Lavender kills strep...I Googled it. What follows is my interpretation of what MIGHT have happened to me. I tell you this not so you will use lavender to kill strep (tho' seriously DIE STREP DIE as a friend of mine <Heather> says so often). I was seriously miserable (still kinda am). I tell you this because many people use lavender to soothe, calm, etc...and for PANDAS/strep it might not be the best thing. If you're using lavender think back to see if you can remember any adverse reactions. Not sure that lavender would cause a full out flare if no strep is present, but if it's there, it could cause issues. Again, I DO NOT recommend using lavender against strep.


    Okay...first off, I do believe I have a lavender sensitivity/allergy that played a role in all this. (My ND did say that a lavender sensitivity is fairly common & doesn't use it in her practice.) Two weeks ago, I started using Tom's of Maine wild lavender deodorant after having used the unscented with no problem (except I did uhhhh...smell a little bit, hence the lavender version). I also applied it 2-3 times a day because you do sweat with deoderant only. I didn't connect it at first, but within hours, my knees were hurting. I thought I was getting a virus. Next day was Sat, I felt really lousy/nauseous & stayed in bed. Following day, still felt lousy with some GI issues, nausea, insomnia, joint pain (knees, ankles, one time wrists). Same the next day. By day 6, I connected starting to use the deodorant with my symptoms & stopped using it thinking I'd feel better. The symptoms continued, and I added vomiting the morning of the next Sat & stayed in bed again. Also had occasional lower back pain. I had also found out last week I had strep in my gut via a test my ND ran. Yesterday, I Googled it & lavender kills strep. SOOOOOO...I think that by using that lavender deodorant, to which I am sensitive, set off a reaction in my body. It likely set off an allergic reaction in my body, and it probably killed some of the strep. When I talked to her yesterday, my ND thought the joint pain sounded like the high aluminum I have in my moving around & such. So the strep thing makes even more sense with that thought because apparently bacteria can hold onto aluminum...if I killed it, then it let it go. So, I believe I was "herxing" big time. I was also researching Lyme/lavender & posted on the Lyme forum thinking that might've been the issue. (I am going to do testing to find out if that is an issue tho' since it could be there too.) I'm also on digestive enzymes because thanks to the %@^$&!# PANDAS stress, my digestive system is shot (my adrenals are burnt out too & I start something for that next week that's supposed to calm me down--fingers crossed!). I've read that the digestive enzymes can cause some of the symptoms I had, but I'd taken them for 3 weeks without any issues...that's why I believe it was more due to the lavender when it started. Since some symptoms are lingering, those may be due to the enzymes now. We are going to start working on getting rid of the aluminum too. That should be loads of fun since I've already accidentally experienced a bit of it. The aluminum is why I switched to the Tom's deodorant in the first place. ::sigh::


    So, there ya have it. Lavender kills strep. Watch using lavender lotion, oils, candles, diffusers, etc.... And if you are using them, consider if they're causing any reactions in your PANDAS kids (or yourself since lavender sensitivies are common). I actually don't really like lavender anyway but that deodorant smelled good to me...shoulda done the Honeysuckle Rose. But maybe this info will help someone else. I sure learned something! And as far as the strep in my gut, if we get my digestive system working that should take care of it. To my knowledge it wouldn't be affecting my PANDAS son...and I might've just killed it all anyway. Whew.

  6. I'm a PANDAS Mom, but thanks to this forum, I have a working knowledge & total paranoia about Lyme. Does anyone know if lavender can set off latent Lyme Disease or other tick-borne illness? I used Tom's of Maine wild lavender deodorant for 6 days before I figured out it was making me sick. But I'm still sick after not using it for 4 days. The 1st day my knees hurt. 2nd day I just felt lousy & laid in bed. 3rd & 4th day GI issues. General nausea. Fatigue. Feel sick after I eat. Joint pain (knees, ankles, & 1 day wrists). Insomnia. Low appetite (have lost 5 lbs). Vomiting on Sat followed by spending day in bed. Felt ok on Sunday but now GI issues are back. All these are on the list of Lyme symptoms. It could be a virus, (that would fit the symptoms too), but I have had no fever & have been feeling bad for over a week. My ds & dh haven't gotten it either (tho' ds is sleeping fitfully tonight, but it is a full moon too). I really feel like it was the lavender that set things off since in retrospect I started getting sick the 1st day I used it. Figured it was an allergy, which would explain a few things I'd experienced in the past in regard to lavender. Also, I'd used Tom's unscented for over a week prior to switching to the wild lavender, so that natural fragrance would be what changed. Have a phone consult with my ND on Thurs & had planned to talk to her about Lyme testing anyway even prior to having this reaction. (Not sure which lab she uses but don't think it's Igenex.) Just wondered if anyone here knew of a lavender connection. I found online that you can use it as a tick repellant. Just wondering what would happen if traces of essential lavender oil go into your lymph system via deodorant applicaton...seems like it could be bad even tho' Lyme & ticks are different species. ::shudder:: Thanks.

  7. Hey there! :)


    Yep, I think we've been dealing with PANDAS since ds(7) was at least 2.5...maybe before that but we didn't know. But that's the age that we took him in for a speech delay (which did not throw up any red flags at his 2yr appt other than to watch it...he was on target with everything else & actually already knew his abc's & could count). But when we brought him in at 2 yrs 8 months, they started throwing the word autism at us based on his behavior at that appt (which was pretty hyper, but there were also reasons for it that day...BUT he'd also had his first ear infection 2 months before). And even tho' we saw a behavioral pediatrician TWICE who did NOT give an autism dx, our ped's office would still go back to that. When I reviewed his medical records, that's when I saw the pattern of illness/behavior issue, illness/behavior issue, illness/behavior issue...all of these were likely "minor" PANDAS flares. And I was able to relate some parental illnesses to our son's illnesses and/or behavior issues. And our son was not a fussy kid. That's why when we'd see these behavior issues, they were out of the blue & we felt so inept to handle them because we never had to when you expected to have to deal with them (no terrible 2's or 3's...he was over 4 before we got the more fussy behavior with illnesses & it was outta control the week after his tonsillectomy). And the behavior issues were transient, so we were mostly left bewildered as to what was happening. Our son was exposed to strep just before he turned 2, and he did get sick not too long after, but his rapid/culture were negative. We did have a pretty big behavior flare right when he turned 4 & it was actually discussed the day they did his 4-yr shots (he got fixated on clocks right after that & I had to cover them up to break that "habit"...he'd also been in for a sick visit a few days before those shots & never should have gotten them...GRRRRRR.)


    So just to let yourself be at peace, just assume that he did have early onset. There's no way to prove it one way or the other. You found it when you found it & are treating it now. I go thru the same thing wondering how long he went untreated. We had him at the doctor whenever he was sick, which wasn't very often when he was little little. After that first ear infection, he was sick off & on for 1.5 years (sinusitis, "viral pharyngitis," allergies)...got his tonsils out & wasn't sick at all for 1.5 years...then he got strep throat in Dec '09 & a month later we descended into PANDAS. Nobody at the doctor's offic ever mentioned PANDAS as a possibility...actually steered me away from it when I finally found it on my own after our first MAJOR exacerbation last year. Guess I should make it clear that was my EX-doctor's office.


    And not to make you slap your head & utter "DOH!", but I just now looked up the cause of pink eye...it's streptococcus pneumoniae. DANG! So...that might answer your question.

  8. @JAG10: K switched my son to Biaxin...he'll be on it for 4 weeks (we're in our 3rd week now). Originally, he'd done just 2 weeks' worth & we were to do a steroid burst the 2nd week if no improvement after first week. Then, my hubby got a positive IgG result on a myco p test. They weren't going to treat it (said was just showing a past infection), but I called & got him 10 days of Biaxin. We held off doing a steroid burst for son for now. Will talk to K after hubby's course is done to see what our next step will be. We're seeing good results...not great. But I'll take good for now. We were about ready to pack up the car & travel the 8 hours for another IVIg prior to switching abx. It wasn't as bad as the worst we've seen, but it seemed to be heading that direction. Whew.

  9. We talked to K via phone mid-Oct & had IVIg in mid-Nov. DS was on 250mg zithromax daily post-IVIg. My husband got sick during the 3rd week post-IVIg & did several rounds of abx trying to clear whatever it but stayed sick. We had really good results with the IVIg & I think we were lucky to have gotten all the way out to 4 months post-IVIg without hubby's illness affecting son. And I don't know if my hubby was reinfected with myco p or had it all along & didn't clear it (or maybe he's chronic...and to be fair, I've not tested my levels but have had zero symptoms for myco p). So, our switch to Biaxin has seemed to be doing some good. We still may need to do another IVIg but we may be able to delay it now. And this exacerbation was not as bad as back in the fall, but it was still bad. I'd maybe even call it a flare since it seems things are getting better. If it were an exacerbation, I'd feel like we were starting from scratch & we don't seem to be.


    IVIg doesn't necessarily keep your kid from getting sick. The idea is that you stop the crazy immune function & give the system time to rest & reboot. But they CAN get sick post-IVIg. And if you think you're sensitive to every sneeze or sniffle now...wait until post-IVIg.

  10. We were happy with our IVIg but did lose most of the effects after what seems to be another infection. We are treating positive IgG mycoplasma pneumonia with Biaxin now...just finished 2 weeks/250mg 2ce daily & are seeing good results. Dr. K ordered another 2 weeks of Biaxin for us (and my husband also turned up positive IgG for myco p & is on 10days Biaxin). We may end up doing another IVIg eventually. But the results we saw from our first one were good. Our son was 6 in Nov '10 during his treatment & had been undx'd PANDAS for 9+ months (but he likely had early onset). Be aware that it did take 2 weeks for our good results from IVIg to emerge & we had 4 really good weeks. Then he had a pretty good flip backwards at 6.5 weeks & got mostly recovered from that & then at 16 weeks post-IVIg is when the myco p started it's issues.


    One thing I would advise because I was advised to do this & didn't & wish I had. Run any additional tests prior to IVIg because you won't be able to run any until the 12 week mark or so. What I mean is that it'd be a good idea to at a minimum get pre-IVIg strep titers & mycoplasma pneumonia IgM/IgG. My son doesn't run high titers, so those weren't as important to me (we have the temporal relationship with strep & the behaviors vs. high titers). But the myco p is a biggie since I know his IgG level is high now, but I don't know what it was then. Dr. K usually will only run an immune panel to help with IVIg brand determination. You may be able to get your local ped to run anything else and pull it from the same blood draw. And if you are considering Lyme tests, do them now too. (We haven't done Lyme testing, but may do it in the future...my hubby & I might test ourselves first.) I will say that I wasn't as worried about the myco p too because I figured the zithromax would get it if it was there...but then it didn't & we've switched to Biaxin. And even the myco p test we ran recently was at my request thru my ped because he had to write the lab order locally & K had ordered strep titers & circulating immune complexes only. If I hadn't added the myco p test, I still wouldn't know & would likely have our 2nd IVIg already scheduled vs. getting the chance to try to clear this infection.


    We were in a significant 2nd exacerbation when we chose IVIg. Didn't seem like we had a choice since we were already seeing antibiotics not work when we treated his regular strep with Keflex & then he had an ear infection behind that with behaviors still going strong. We did zith then & he calmed down considerably but flared as soon as 5 days were done. Got more zith & it didn't have the same calming effect. We didn't do long-term abx prior to IVIg tho'. He'd gone into 1st PANDAS exacerbation in Jan '10 (lasted at least 5 months) & we didn't get dx'd until Oct with Dr. K after another case of strep dx'd in Sept caused 2nd exacerbation. Our local ped did not believe it was PANDAS even tho' I'd found it back last May & therefore wouldn't help...so abx weren't even an option for us. That ex-ped was very happy to refer me to a psychiatrist for SSRIs for my son tho. Grrrrrrr. And we were lucky that insurance did pay, but we were happily surprised when that happened & prepared to pay ourselves.


    Good Luck & Happy Healing

  11. At times, my son will complain of double vision & will look thru his hand like that. I assume it is PANDAS vs. something else since the basal ganglia does play a role in vision. He doesn't have it all the time, so I assume it's a flare of some sort. And by not all the time, I mean it lasts for just a few minutes or so & then he's fine. He is due for a vision check, but I do not notice any other signs that he needs glasses or anything. When PANDAS hit last year, he would squint his right eye, which might have been a tic or a vision thing...couldn't tell & didn't know we were dealing with PANDAS. Did get his vision checked then & it was perfect.

  12. Thanks for sharing that about Cipro. Dealing with myco p here. Son had negative IgM but positive IgG & we went on Biaxin (switched from zith) & (KNOCK ON WOOD) seem to be seeing good results from that (which means we get to hold off on a steroid burst, which I didn't wanna do if I didn't need to do it). In the meantime, my husband has been sick since Dec, & had a neg IgM & neg IgG myco p test in Feb...then a retest in March showed positive IgM. They weren't going to give him anything for it, saying it was a past infection. It took me 4 working days & a weekend to talk to that dr's office to get hubby some abx...Biaxin too. Since they're both creating IgG, we probably just didn't catch the IgMs or I've read that sometimes adults don't make them in reinfection. My husband was on Cipro to clear myco p 2.5 years ago. I'm not sure that it ever cleared & might've gone chronic. He seems to get sick with it every year (usually starts with a sinus infection...then he stays sick), but he's only been tested/treated that once. At this last appt, where they said it was a past infection, they told him he had mild asthma...had given him steroids & an inhaler & Nasonex. I'm pretty sure that dr is not gonna be open to a possible chronic myco p infection, but maybe he will be. I've never had myself tested for myco p...need to get that done somehow. I do know that when I trace our path back, that when my husband was sick that we saw behavior issues with our son. He was never tested for myco p, but did have "bronchitis" once, which was also at the same time my hubby was sick.


    Hope the Cipro does the trick for you!

  13. Even Swedo acknowledged that reaction to exposure can be quick. I think it's in her Autism One talk. She says hours, but I figure it would depend on susceptibility & sensitivity of the child & the proximity to the infection. It helped me understand how I could send my undx'd child to public school in a perfectly fine state & get a phone call around noon about issues.


    P.S. Aren't all us PANDAS Parents neurotic to a degree? I thought it was part of our charm & allure. LOL!

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