EmersonAilidh
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Posts posted by EmersonAilidh
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I can't look it up right now (in a rush) but that sounds horrifying! I have MycoP (first thing -along with Lyme- that I tested positive for). Just makes your skin crawl!
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So your not sure that PANDAS is the diagnosis? Peglem... could u tell me some of your child's symptoms, if u don't mind. Is sleep REALLY bad?
Well, I'll tell ya, Wilma. My daughter is nonverbal and has been "diagnosed" with autism since she was 3 years old. Until she was 10 (when we found my current pediatrician) I really couldn't get a doctor to check anything- everything was attributed to autism...illness just didn't exist in autism, I guess. She did, in spite of being sick with URIs almost constantly (was told its probably allergies because autistic kids get those a lot!), develop skills in reading and math, and even had quite a few (a hundred or so) verbal words that she used appropriately. Around 8yo, that was all lost and she degenerated into a mess of misery and self injury. But we were still seeing things through an autism filter and her OCD was called stims, stereotypies, and perseveration, etc. Around age 10, we had an insurance change and had to switch docs and stumbled upon her current pediatrician. At the same time, I was beginning to hear about PANDAS-the research was very new (was it really only 5 years ago?) and asked the new pediatrician to test for strep, even though she had no typical symptoms. She came up positive and we went through a couple of years of courses of abx whenever she tested positive for strep- which was whenever she was not on abx (well, there were a few negatives in there). She improved on abx every time and then when her behavior deteriorated, I'd bring her back in and she'd test positive and then we'd have another go round of abx. Getting the help of specialists locally was impossible. Her tonsils came out when she was 12. We thought that'd take care of the strep, so did not keep up the abx, and nobody wanted to swab a throat that was healing from tonsillectomy anyway. We had one of the worse flares ever after that. Bad, bad photophobia. Things that looked like seizures, but did not show up as seizure activity during the 8 day video eeg. Constant psychotic rages. After she healed the strep was back and she had bad vag. yeast as well. About eating and sleeping...was an issue her whole life- Until age 6 we kept her on bottles of strawberry protein diet shakes just so she'd get enough nutrition to stay alive- she would not eat solids and though she could drink from a cup, she would only drink water from a cup. Finally got rid of all the bottles when she was 6 and wouldn't drink them anymore because she was sick w/ a sore throat and it hurt to swallow. (that's what I think anyway- doctors did not check her throat because autistic kids have eating issues and the endless drooling is supposedly typical of autism as well). So we found a few things that she would eat- not great nutrition, but the best we could do. And between birth and age 10 when she started getting abx, I think she slept through the night maybe 10 times or so. I honestly do not remember much because I was so fricken sleep deprived myself! Anyway, with abx the sleep got better- somewhere in there we gave risperdal and other psych meds several tries. The risperdal did help her sleep...until it didn't anymore- but hey, it was a nice month! Still, when she has a PANDAS flare, sleep becomes an issue again and so does bedwetting. OCD gets in the way of sleep- she'll be just about drifting off then jumps up in a frenzy to perform whatever thing is OCD at that time, and has a terrible time getting it right. She wakes in the middle of the night to do the OCD, as well- could be she dreams OCD!
The reason I said I'm not sure about PANDAS is because just recently she's had some extra stuff going on- looked like sydenham's chorea/lupus/hyperthyroid/diabetes insipidus/arthritis all mixed together. Then she tested positive on a rapid strep test while on 2 ABXs. So a course of clindamycin was administered and 2 days later she had a rapid positive again- but a swab was sent in for culturing and sensitivity testing. The culture came back negative for strep. So the "more than PANDAS" symptoms, together with the fact that we no longer know if any of her rapid strep positives were actually strep...I'm feeling sort of lost. Though her "other symptoms" are slowly improving, her PANDAS stuff (or what we thought was?) is definitely getting worse. In fact I had to take a break in the midst of writing this to deal with a twenty minute bout of SIBs and aggression. I can pretty much gauge how poorly she's doing by how beat up I am.
I'm sorry this is so long, (and you're probably sorry you asked) but once i started it just all came pouring out. I hate this crap!
Peggy,
I read your post yesterday and wanted to respond, but couldn't think of how. I'm trying to think of a word that honors your love and devotion to your daughter and the one that keeps coming to mind is holy. Your strength is so admirable; you are an inspiration to all of us here. You frequently enter my thoughts when I am praying, but in those moments of prayer, it is you that is giving to me spiritually.
You are an amazing, amazing woman and mother. Let it pour out. I hate this crap too.
Jill
I second that! You're amazing, Peggy!
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It seems that all of these PANDAS kids have normal EEG's.
My child's EEG's were abnormal. She probably has more going on then just PANDAS, I guess. Isn't there any PANDAS kids that have abnormal EEG's?
Me. Showed Epileptogenesis in November of 2009 but haven't gotten it looked at since. -___-
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At the beginning of this week I finally maxed out on the dose of Noni/Samento(TOA-free Cat's Claw), fifteen drops twice a day, one day behind schedule. So I've got a couple weeks of peace where nothing is increasing or changing, phew! Whenever I finish this prescription of Doxycline, though, I've got to add in Omnicef & I'm pretty scared. If the uphill herbal dosage made me herx as bad as it did, what kind of terrors can I anticipate with the addition of the cell-wall inhibitor? & on that note, aren't those the worst kind of Lyme antibiotics since the Borrelia can just go into its cell wall-deficient form? I'm so confused. :/
Also, has anyone found any light sensitivity relief? Besides the obvious sunglasses, of course. I'm just tired of having to wear them everywhere I go. :/
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Huh! It said there was still a week or two left when I posted it! No matter, though. If voting is closed then we won!
& no, no sign in stuff!
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I've gotta say, EEG's are one of the few things I do trust in the neurological community. If they were "typically abnormal" then it wouldn't make sense for people with seizures that aren't petit mal to get diagnosed. I mean, good luck finding someone who has tonic-clonic seizures with a normal EEG. Every doctor I've asked, & there have been QUITE a few, has said that about 2-4% of people without Epilepsy will get an abnormal reading. My EEG in November 2009 was insanely abnormal & I've had a whole #### of a lot of trouble getting someone to duplicate the test specifically because they all say "Well, you're probably in that 2-4%", which is definitely a wide enough margin to refuse to redo a simple-enough test. -_____- (Can you hear my sarcasm?)
The paper says that EEGs are typically abnormal within that specific condition. I wouldn't take that as a blanket statement. Epilepsy isn't something like P.A.N.D.A.S. or Lyme. There are certainly still mysteries but I don't think that taking a normal test result as abnormal is a good idea.
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http://www.sponsafier.com/#/gallery/page:0/pageSize:12/sort:vote/
Toyota is making a racecar for whichever cause gets the most votes. Being from Texas I'm surrounded by NASCAR waaaay too much & have come to abhor racing, but it's still an awesome opportunity & so far we're number one! Second place has half as many votes as us, but don't get too comfortable & keep voting & posting!
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I'm gonna ask my Health Science teacher if we can do something special for it, even if it's just reading an article or something. If she'd let me do a presentation I'd totally be up for it!
So far I have come up with no better ideas than a shirt though.
I checked out the official events page & the majority of them are things I can't replicate or do on a smaller scale, even. Bleh. So awesome about all of the offers for Autistic families! The only thing I've found around here is that the Dallas Museum of Art is opening a few hours early exclusively for Autistic families. They're gonna have a kid-friendly exhibit, too. Can't imagine many Autistic children liking their usual collection too terribly much, haha.After searching through LOTS of designs online I think I'm gonna do a "Peace, love, Autism" shirt. Some of the ones online were awesome but I'm a cheapskate & have to make everything on my own, hahah. In my experience there have been many times when I've braced myself for people not being understanding when I tell them that my brother is Autistic... only to find out that they don't even know what it is. "Does that mean he's retarded?" "Those are the people who can't talk, right?" So on, so forth. Hopefully this one will be a tad more successful than the Rare Disease Day one. I think that it will be since most people have at least heard of Autism, as opposed to TS-L & P.A.N.D.A.S.
I hope everyone's having an awesome day & that we're able to think of something great to do!
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Does anyone have plans?! I know this year's theme is "Light it Up Blue", but I don't think anyone in our town would be at all curious, much less enough so to ask, about why our lights were blue. I was figuring I'd just make another t-shirt but wanted to try to do something a little more creative than that! Hmph. If we don't end up doing anything as a family, I might be volunteering at the Special Olympics that day but I was just wondering if anyone had cool ideas for things to do. Let's all brainstorm!
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Buster, you are AWESOME!!!
I just wanted to add that one reason I don't log on here as much anymore is that I don't get on the computer nearly as much now that I have my iPhone. Sounds dumb, but it's true. I've also gotten in touch with some of the Moms I've gotten closest to on here on FaceBook & through the phone & all that. SarahJane, PixiesMommy, & BrownEyesMom are some examples of that. I definitely haven't forgotten about ACN though!!! Lots of times when I do log on I'm just watching. I've been doing my best to avoid posting "updates" everyday because believe me, I want to. Hahah.
Another reason is that I have been doing my best to keep Lyme stuff on the Lyme board. I'll mention it on here if it's relevant, but I try to keep them separate since I know some P.A.N.D.A.S. moms do get frustrated about all that. I think a lot of it ends up on here just because there are so many members & most of us are really active, whereas the Lyme board is just getting up & running. I still think about everyone I've met on this forum every day & I am so thankful to have found ACN when I did! A year ago at this point I had never seen a P.A.N.D.A.S. specialist. Had no idea about the Lyme. Had never even dreamed of starting treatment! I've made more progress in the ten months I've been on ACN then I have in the six or so years that I've been sick, & I owe it all to you guys! This forum is invaluable & while it is sad to see people go, you have to remember that most people wouldn't want to surround themselves with all of this after things got better. Personally, I think I'll only be logging on more once I'm better, but it's totally understandable. I love my cyberfamily!
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I always have problems recommending/advising against meds since I was on so many at once but Tenex is one of the few that I'm okay with supporting. My time on it was brief but it saw a noticeable improvement in symptoms. Can't remember the dose though :/
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& this SUCKS. Trying my damnedest to keep my head up though. Today, day 8, has been the most difficult yet. The headaches, that I haven't had in MONTHS, are back. My muscles ache so bad I can hardly use my left arm. I am more exhausted than ever. But I just keep reminding myself that worse is actually better. I have another seven days of increasing the Samento & Noni, so I think it should get a little better after that... Let's hope so, at least. The most notable little moment of clarity was when on day 4 I sat to play the piano & played a song that I haven't been able to in 3 years.
Made me so happy. So far there have been no huge, dramatic changes to report, but there are definitely smaller ones that still put a smile on my face. I stayed up until 1AM. Sounds like such a lame thing for a sixteen year old to be proud of, but oh well. Wish I had more to relay, but all I've really been doing this past week is getting to know that monster called a Herxheimer, which sucks, sucks, & oh yeah... SUCKS. Ugh. Hopefully I'll be able to post something awesome soon. For now, that's about it. -
Even I'm not on nearly as often as I used to be. I think a huge part of it is getting cured or at least making progress & not wanting to focus on the problem by coming on here. As I've been on my way to getting better, I've noticed myself getting on here less & less. It's sad & sometimes it even feels like losing a friend but if I don't see someone on here for a while I take it as a good sign.
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Oh yeah! Forgot to ask... Will you be pursuing ART testing if the co-infection tests come back negative? I've heard those are just as 100% reliable as the Borrelia Burgdorferi ones! Yippee!
except not really, just kidding, hahaha. Also, antibody screens or PCRs? I was lucky enough to test positive for Lyme & Mycoplasma the first time we ran a blood test, but it missed the Bartonella & Babesia. As far as I'm concerned, ART is the way to go! -
I'm still in the worse stage myself, the MUCH much worse stage really, so I can't offer much advice but you & your little one will be in my prayers & thoughts! <3
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Melatonin never did a THING for me. So consider yourself lucky! Hahaha. To avoid that groggy feeling I'd suggest trying some Valerian root. After being prescribed practically every benzodiazepine known to modern medicine with literally zero success, Valerian root did the trick the very first night! Definitely worth looking into.
So glad to hear about your treatment! It's awesome to have someone starting at almost the exact same time as me, hahaha. Are you doing TOA free Cat's Claw? Mine is called Samento & I can't remember if I told you on FaceBook it not, but, it's a killer. (get it...? Cos it's killing spirochetes..? Hehe.
) I know for me & Linda both it has been... Gnarly. Can't think of a better word, hahaha. So, good luck with that! Are you doing the uphill dosage?So happy for you guys! Best of wishes from Texas. Y'ALL (
) know you can shoot a message to your Southern treatment buddy whenever! -
The tingling/numbness in the extremities is very common & was a huge symptom for me! It got better, not worse, after treatment though.
Have you looked into Bartonella? Me & PixiesMommy's daughter both get this weird, spiderweb looking pattern on our skin sometimes. I can't speak for her, but mine is mostly on my legs & is a circulation issue. PixiesMommy found the name of it but I can't remember... Either way, it's associated with Bartonella & since it's a circulatory problem it is related to the tingly/"asleep" feeling.
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Can't tell if that says AI3 or AL3. I've heard lots about AL3, which is just a fancy name for Omega 6 fatty acid (I'm ALMOST positive it's 6...). Nothing about AI3, though. Even if these do work I think there are much more reputable, tried & true supplements to look into. That's just me, though.
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We were recommended Alka Seltzer, too. Never bought it though. D: so many suggestions, so little time & moolah.
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Can't tell if you're referring to me or not! I'm typing on my phone so sorry in advance for any typos. Mine said it was preferrable to take it on an empty stomach, but, like you, it didn't bode well in the queasy department. All of the absorption tips sound awesome! I usually just eat a little snack with it, not a whole meal or anything big/heavy like that.
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Haha! Definitely enough microbes over here, too.
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Don't have time to read all of the responses but I get this ALL THE TIME!!!!!!! I've had a hard time getting it to show up in photos, though. It mostly happens on my legs & feet. Also, I've got burns on both of my knees & they turn way darker whenever I've got the spiderweb thing going on. I showed it to the nurse practitioner at my last well check & she told me I was cold. I like her but, um. I think I would know if I was cold.
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Unfortunately DS is a third generation Lyme plus/minus Bartonella child with Bartonella currently and Lyme not yet provoked. I have Lyme, Bartonella and Babesia not yet provoked. My mom very clearly (hind sight 20-20) had lyme plus Bartonella. A.R.T. has confirmed all three of us and blood tests in DS and I. Need to get DH tested soon. Have trained under and spoken to Dr Klinghardt as well which has further confirmed all of this. Also lost 4 of my 5 brothers to lyme and coinfection related conditions. My sister, brother #4, myself and mom are the only ones in our originally huge family that are still alive. I was an army brat so we lived everywhere, mom had pets, even had a small mice infestation once and hence the cat, rabbits and a dog as pets- all indoor ourdoor pets, and ofcourse not too much Lyme awareness.Mom is pushing 80 so don't want to pressure for bloodwork.
Dr Klinghardt thinks it might be further back in he family tree as he heard the history. My ancestors have also had a lot of military/war exposure- grandpa and great uncles were all soldiers.
Jodie
I am so sorry to hear that but also so happy to hear that you're seeing someone as good as Dr. Klinghardt! Best of wishes to you. <3
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Ok Emerson- that just gave me goosebumps...yikes
I'm so glad you're on your way to better health...you really deserve it!!
What did? D:
& thank you!!! Your Lyme pamphlets were a HUGE help to my parents!
I checked out the official events page & the majority of them are things I can't replicate or do on a smaller scale, even. Bleh. So awesome about all of the offers for Autistic families! The only thing I've found around here is that the Dallas Museum of Art is opening a few hours early exclusively for Autistic families. They're gonna have a kid-friendly exhibit, too. Can't imagine many Autistic children liking their usual collection too terribly much, haha.
except not really, just kidding, hahaha. Also, antibody screens or PCRs? I was lucky enough to test positive for Lyme & Mycoplasma the first time we ran a blood test, but it missed the Bartonella & Babesia. As far as I'm concerned, ART is the way to go!
) I know for me & Linda both it has been... Gnarly. Can't think of a better word, hahaha. So, good luck with that! Are you doing the uphill dosage?
So depressed
in PANS / PANDAS (Lyme included)
Posted
Apparently it's just not a good week to be a panda. I understand all of this. It is important to check for infections & stuff, but I know that's not what you want to hear.
I know what it's like to get so angry over something little, or even nothing at all. I know what it's like to feel totally hopeless & empty & alone for no reason, or for one that shouldn't be a big deal. I know how things build up. How I get frustrated because I forgot something downstairs, so I pull some hair out. Then I get mad at myself for being unreasonable so I lock my joints. Then I feel stupid so I hit myself. I know rages better than I would like to. I know how afterwards you get so tired & you feel so horrible (not even angry anymore but I'm sitting there like "What have I done?" & chastising myself for acting like a toddler) that all you can do is sit in a ball & sob until you can't anymore. It sounds like a horrible day to most people. It's everyday for us. I know how sometimes the word optimism can mean as much to me as rhinoceros or apple. Because it feels like nothing is ever ever going to get better because I'm fundamentally broken, just inherently bad & doomed. For me, that's my self-harm/suicide tendencies motive. I feel like damaged goods. I'm screwed up & I can't be fixed. Then I start thinking that if I'm the problem, there's only one way to fix it..
I don't even know you but I love all of my pandas, including you. Feel free to PM me anytime. I'll admit that I'm rarely uplifting but it's been my experience that for whatever reason, sometimes it helps just to hear someone say that they know how you feel. <3