eljomom
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Posts posted by eljomom
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Hi Emerson,
It's not about saying too much...really...it was worrisome to hear about some of the darker thoughts only because it's hard to tell on a forum if you are at the point of imminent danger, or just sharing some vents about it all. I know being the mother of a pandas kid, there are times I think about how much more I can handle everything, and how I can get out of having to handle it....maybe that was all you were saying. It is just hard to tell without really knowing you personally, and I think I can speak for everyone here that we just want you to feel better, and to be safe. Hugs!
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This is great to hear! I wish everyone who had positive outcomes would post too....gives us hope and direction. Thanks for sharing!
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Well, busy day teaching our co-op, and ended up NOT taking dd to doc. Temp. was only around 99.5 - 100, and she's up and around, generally active. Will give till tomorrow. Unfortunately, it's my next dd's birthday tomorrow, so hoping we don't spend a chunk of it at the ped. I just switched from a practice where we NEVER waited more than 2 minutes to be seen (but the doc wouldn't give pandas the time of day), to a practice we were at years ago, where the ped. isn't totally educated about it, but has heard of it at least, and said he'd follow guidance of our pandas docs orders...anyhow, our first apt. I waited for 1 hour and 20 minutes to be seen. That was one reason we left. And when I was checking in, another mom came up and said she hoped she didn't have to wait an hour like she'd had to her last few apts......
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I know we are all just moms here, but figured I'd throw this out there. DD7 as you know is on Zithromax already...very low dose (100 mg), and obviously not doing anything to prevent infection. She's had a bad cold for a week or so, and now it's turned into a cough. Normally, wouldn't bat an eye at this. BUT......things are different now
So the past 2 nights the coughing has been bad, and today she's running a little temperature again (100). Again, nothing big. But I've always been told that if a kid is sick...starts with a fever, fever goes away, but then comes back ... maybe secondary infection. So I am guessing this is turning into either a sinus infection, or even walking pneumonia. She had the latter a year ago, very similar situation. Sick, fever was better but congestion and cough stayed, then new fever. So, given the situation, I am paralyzed as to even going to the ped. They are clueless about the whole pandas thing, and I dread even explaining the zithromax, etc...and I dread even more trying to TRUST what they would do here. PUll the zithro. and add a new abx? Increase Zith. dose? Keep low zith and add a new one? Also, is the "test" for myco p just he igg and igm? Not sure that's what this is, but just in case....
Thanks,
w
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oooh....yes....will try the vicks now. she's in with me now, not looking like I will sleep either. She just needs some relief from the coughing. Eyeballing the Benadryl.....
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A couple of my kids have had the congestion, snotty nose, scratchy throat at the beginning thing going on. It's progressed to coughing the past few days. Really seems like mostly from postnasal drip, but the past 2 nights, the coughing has been all night long...just coughing and coughing.
She has been on 100 mg of Zithromax for 3.5 months. I believe this is viral. BUT....my husband, who still has no anxiety about pandas, DOES happen to hate coughs. He said I need to take her to have it checked tomorrow....and I'm afraid to even go there. How do I trust what any regular old pediatrician would give her. More antibiotics? Cough medicine? I'm afraid to give her anything for the cough......it seems like everything I read is how these pandas kids react differently do normal meds. SSRI's, which would usually help anxiety and ocd are a no-no. I thought I even read NO Benadryl (used to be a staple in this house). So is there any kind of list of what to NOT give sick pandas kids??? And what we can give?? I don't want to rock the boat and stir up any symptoms, agitate her, etc.
Thanks!!
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Well, today was CRAZY and totally forgot about her bum in lieu of other "happenings"....BUT, bedtime tonight, the bulb went off and I looked again, not great lighting, but I swear it was GONE! I have NO idea. But I will ask next time I'm at ped.....thanks for the feedback
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Hi there,
My dd7 (pitand/pandas) has had a lot of congestion for the past 5 days or so. A little sore throat at the beginning, but that's it. She dresses herself (well, ummm, that's another story), but I don't usually get a close look at her "booty." So tonight I happened to be helping her put her pull-up on because we just painted her nails, and she happened to bend forward, and I could see red. So I took a closer look, and there's a red ring -- sort of right where the cheeks would touch in the crack. It's not solid red to the anus (sorry to be so graphic), but more like it's NOT red near the anus, but when you move farther out, then the red ring. I would never normally give this a second thought, throw some A&D on if I could find any laying around, and move on.
Any thoughts? Been googling, but can only find "baby diaper rash" stuff.....
Thanks!
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Hi there,
I'm sorry if I don't know your story...but the "chest spasm" caught my attention. I have been wondering about another child of mine, and her "chest pain" she has complained about off and on for the past couple years. Along with headaches in the same way. Her ped. listened to her chest and said her heart sounds fine....probably all from constipation. Does your dd say her chest "hurts"?
Thanks for sharing...
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Just tried to PM you...you are full:)
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You said it best....it's bloody kindergarten. And I agree with Amy....kindergarten or any grade. First of all, kindergarten kiddoes are about as germy as can be. Yes, they wash hands before lunch, but they are just not generally up to par on hygiene and keeping germs to themselves
And being post IVIG, from what I hear, it's super important to keep them away from illness. Even if my kid loved going to school, I'd be keeping them OUT after IVIG.I am certainly biased, as we now homeschool. NOT because of pandas, but sure am glad I started homeschooling 2 years ago....I can't even imagine where we'd be with constant strep exposure. My first 3 kids had strep ALL THE TIME. Depending where you live, there are so many avenues you could go to keep your little one in contact with other kids....but you would be able to pick and choose who, be able to talk to the moms in the group, etc...
I am also a teacher by trade
and trust me, the amount of academic work being accomplished during a 7.5 hour day is astoundingly minimal. Yes, they get social skills, but I believe those can be taught by having your child interact with other children in a smaller, more "germ-controlled" setting while healing is going on.... -
Hi Alex--thanks for posting even when you really are trying to stay away....I can't tell you how much these posts help to hear from people...
I have a question about the dental problems and Celiac....I am suspecting it in one of my kids (non-pandas), and wondered what you meant by that? Also, that link you posted is not active...would you mind checking and reposting??
thanks!
wendy
I haven't been posting at all because things were not going well. My son would have a brief good stretch and then relapse. I am hopeful that we are finally getting to a point where we are making some lasting headway, but it is still too soon to be sure.
My son had PEX and has had five high dose IVIG's with the best response coming after PEX and the first IVIG. Subsequent IVIG's have had a positive effect but nothing long lasting or dramatic. But for each of those IVIG's that didn't seem to do much, we had a fairly significant immune challenge fairly soon after that may have been the reason, tooth infection, ear infection, multiple bad colds, gastro-intestinal illness.
The tooth issues have been big for my son. After PEX, he had a tooth infection that was devastating. Like others I have seen on the forum, he seems to have a significant uptick in symptoms even with a loose tooth. He has three baby teeth left and I can't wait until they are out. I had a thought the other day that the supposed growing out of PANDAS at puberty may be related to the fact that around puberty is also when all the adult teeth have grown in. I have heard so much lately about poor dental health resulting in inflammatory/immune processes taking place in the body, such as heart disease, related to the bacteria from the mouth that enter the blood stream when people with gum disease chew or brush teeth. Maybe the same thing is happening with the loose teeth. The breach of the gum allows all that mouth bacteria an avenue into the body which requires an immune response, and voila', psychotic child. Just a thought.
Anyway, we finally broke down and saw an llmd when nothing else seemed to be working. He didn't see any real evidence of tick born disease in the test results but said that doesn't necessarily mean anything, and that regardless, my son's issues certainly seemed to him similar to what were infection induced problems in others and thought it was worth it to try a multi antibiotic approach for a while. I would say we have definitely seen positive results, although he is not symptom free, he is happier, has much more mental clarity and is more vigorously health. We'll see where it goes.
We also recently took him off of gluten due to ongoing bouts of constipation followed by diarrhea and low appetite in addition to poor teeth quality which is a Celiac symptom. The stomach problems are certainly much better, and Celiac is associated with mood and behavior disorders and even OCD. Here is a link. http://psy.psychiatryonline.org/cgi/content/full/50/3/300. We are going to eventually get the testing for Celic, but that requires going back on gluten, and right now we don’t want to rock the boat.
I wish we had better news but he has really had a good stretch these last few weeks and we have some optimism again. I'm still convinced that worst case he can live a good life with at most a low level of symptoms that need to be managed. Hopefully better than that. I still read the forum on occasion and still hope someday to get on here and tell of our success.
Alex
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Peglem....right there with you. Wish these docs would communicate more, instead of trying to be the one-man army. NONE of them (the top pandas docs) seem to be healing everyone they see, and I mean no disrespect by saying that. But if they all put their heads together (like in the summer, but NOT just for naming and "does it really exist" purposes) and look at all their patients, what has worked for what type kid, etc....maybe we could get somewhere....
PhillyPA---does he say steriods WITH IVIG or try them first? Also, burst or taper?? This is the real issue here for us, though, is that dd7 isn't "bad enough" for IVIG yet, according to doc. So....we wait for it to get bad enough, which means longer time goes by, thus harder to treat, etc......does this doc believe in treating milder cases in order to treat early enough?? Thanks for sharing that info.
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Wow, this was NOT what I intended with that question, although I knew in my gut, there might be some disagreeing opinions. I respect them ALL. I appreciate everyone's input. Philly PA and Susan....I am enlightened by both of your posts. Honestly. I do agree with PhillyPA that at some point, I feel Lyme was a diagnosis of hope....I do NOT believe that all LLMD's are "well-rounded" and will explore and rule out other things. I DO believe that MANY LLMD's are "tunnel-vision" Lyme. BUT,BUT, BUT that is my opinion only. I could be totally wrong. And NONE of us are MD's as far as I know, so in a nutshell, this whole forum is OPINION....some more educated than others. I don't think there is any disrespect intended by anyone here. We are all on a desperate journey to heal our kids. I do also agree with Philly PA that there was some advice given on this board to pandas parents that have sent them into a Lyme tailspin. Some people here have changed their "cause du jour" with regards to what their child "really" has. Some are getting better, and some clearly are not. But we are ALL on a journey. I think it's important when people read this forum to understand that we are all parents and not doctors (while likely more educated than some doctors!), and to really be careful when offering advice and treatment. I think it would be great if this forum was more of a "this is what we've tried/are trying/are thinking about trying...and why...and if it's proven to be helpful." NONE of our kids fit a one-size-fits-all mold. I am guilty of jumping on anything I see posted here too at times. But it's important to know what our kids symptoms are, how long, there's just so much more going into it.
Susan, I am sorry you feel like you need to leave the forum....that is truly sad and a loss. You have a pandas child who also happens to have Lyme. So maybe both boards would be like home for you. I don't think Philly PA intended to insult or cause drama here....I greatly appreciate her level-headed advice. She neither told me "do" or "do not" but just shared her experience. We just need to all not take stuff so personally. Noone is saying "no lyme/pandas" people on the pandas forum.
Not to sound sharp here, but I have enough drama with an almost 14 year old daughter....come on people....get over it!!! Sorry, PMS too....but really, let's just value each other's opinions, take what we want, and leave what we don't, and be careful to not be definitive in any advice given here...just suggestive. I don't really know what I'm saying anymore. Just tired of people getting their feathers ruffled over wonderful dialogue.....
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HI all--
Posted on Lyme forum too...but thought I'd throw it in here too, for a balanced view. Thanks for any info....I am happy to hear either good or not-good thoughts
My dd7 is being treated for pandas/pitand. Never a clear strep trigger, but never tested. Abx not helping much...many tics, some ocd, sep. anx. a bit better, etc...Long history, but we did do Igenex Western Blot back in November. Her results were:
IgM (Negative)
31 ++ (but then confirmed negative on 31 epitope test)
41 IND (was + on LabCorp Western Blot)
58 +
66 +
83-93 IND
IgG (Negative)
30 + (just tonight Dr. H @ Igenex said we should have run epitope on that...that it may have actually been band 31)
34 IND
41 ++
58 +
CD57 NK Test
NK Cells Absolute CT 243
NK Cells (%Lympho) 5.40
IFA B Burgdorferi G/M/A
1:40 INDETERMINATE
I have been told by my ordering pandas doc to put it to rest (the Lyme thing), but for some reason I just haven't. Maybe it's my own obsessing, or maybe it's gut. Mainstream docs say that the reason they require so many positive bands is so that it's not the cross-reacting viruses or bacteria giving a false positive. I sort of buy into that. I mean, if it's really positive, and some people are CDC positive, why aren't more bands positive on the Western Blot for people. It seems there might be some validity in that belief.
On the flip side, my daughter's Cam K was 168, and there has been no strep that we know of in the past year...who knows, never tested. So what is causing that to be high, dd to have many tics, etc...ocd...
So I called and spoke with Dr. H @ Igenex again tonight. He really wished we'd run the band 30 IgG epitope test to see if it was actually band 31. When I spoke to him a few months ago, when we first got results, he didn't think it was positive. Now, in looking at dd's results again, he says she is right on the line of so many bands that matter, that he thinks we should run some additional tests, and re-do some.
So I am wondering if anyone could give me some advice on if these tests should be run again, why, etc...
IgG and IgM Western Blots (TEst # 188 and 189)
Test # 875--Dot Blot
Test # 5095--Coinfections (Including Bartonella because we have a cat??)
He had first said to do Panel 6050, which has DNA and PCR's or something, but then after hearing that dd7 did antibiotic (started the week after the blood draw for Igenex) one month of Augmentin, then Dec. 15 switched to 100 mg/day Zithromax (very low dose) and still on that, that abx would affect the PCR's.
I can't even imagine how much this will cost......
Thanks for any input..
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Hello,
My dd7 is being treated for pandas/pitand. Never a clear strep trigger, but never tested. Long history, but we did do Igenex Western Blot back in November. Her results were:
IgM (Negative)
31 ++ (but then confirmed negative on 31 epitope test)
41 IND (was + on LabCorp Western Blot)
58 +
66 +
83-93 IND
IgG (Negative)
30 + (just tonight Dr. H @ Igenex said we should have run epitope on that...that it may have actually been band 31)
34 IND
41 ++
58 +
CD57 NK Test
NK Cells Absolute CT 243
NK Cells (%Lympho) 5.40
IFA B Burgdorferi G/M/A
1:40 INDETERMINATE
I have been told by my ordering pandas doc to put it to rest (the Lyme thing), but for some reason I just haven't. Maybe it's my own obsessing, or maybe it's gut. Mainstream docs say that the reason they require so many positive bands is so that it's not the cross-reacting viruses or bacteria giving a false positive. I sort of buy into that. I mean, if it's really positive, and some people are CDC positive, why aren't more bands positive on the Western Blot for people. It seems there might be some validity in that belief.
On the flip side, my daughter's Cam K was 168, and there has been no strep that we know of in the past year...who knows, never tested. So what is causing that to be high, dd to have many tics, etc...ocd...
So I called and spoke with Dr. H @ Igenex again tonight. He really wished we'd run the band 30 IgG epitope test to see if it was actually band 31. When I spoke to him a few months ago, when we first got results, he didn't think it was positive. Now, in looking at dd's results again, he says she is right on the line of so many bands that matter, that he thinks we should run some additional tests, and re-do some.
So I am wondering if anyone could give me some advice on if these tests should be run again, why, etc...
IgG and IgM Western Blots (TEst # 188 and 189)
Test # 875--Dot Blot
Test # 5095--Coinfections (Including Bartonella because we have a cat??)
He had first said to do Panel 6050, which has DNA and PCR's or something, but then after hearing that dd7 did antibiotic (started the week after the blood draw for Igenex) one month of Augmentin, then Dec. 15 switched to 100 mg/day Zithromax (very low dose) and still on that, that abx would affect the PCR's.
I can't even imagine how much this will cost......
Thanks for any input..
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well, for us, while this may have started a couple years ago with good days, etc...but I wasn't even aware of pandas, and may have just written it off as a phase....however, NOW, since the big decline, the tics have stayed, and it's been close to a year since the first tic, and 8 months since the explosion of tics....
This just still goes back to my big question----maybe the infections are cleared, and it's the autoimmune issue at hand. The immune system thinks the brain is an antigen and keeps making auto-antibodies, because the brain isn't going anywhere....and it's these autoantibodies that cause the issues and symptoms, right??
That is a very interessting thought. hmmmmmm but if the brain is always under attack. how do we account for the good days, weeks, months of no symptoms?? It does make sences in a logical way that the brain isn't going away so the antibodies are always there.. but so far with PANDAS there doesn't seem to be much logic in it LOL.. stuff happens that doesn't seem like it should be stuff doesn't happen that seems like it shouldn't ~sigh~
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Okay, that makes sense....so are you thinking that the BBB is STILL compromised in pandas kids? Especially the ones who no longer remit...like us, who's ocd started a couple years ago...may have been more up and down, but once the tics started this summer, they have NOT stopped. Wonder if BBB is STILL compromised???
JenniferG---I will try to explain...not sure I am correct in any way, but basing it on what I have read, etc...correct me if I'm wrong anyone...
Pandas is an autoimmune response to strep (or some other pathogen) in which the immune system mistakenly thinks an area in the brain (basal ganglia) is strep (due to molecular mimicry), causing inflammation, which then causes problems with signaling of dopamine, thus the symptoms.
Now here's where I get stumped---if the infection clears, I think in some people the body stops pumping out the auto-antibodies, and remission occurs until the next immune assault. I think in other people, once the infection clears, the body still sees the brain as an antigen, and keeps making auto-antibodies. And maybe in some people, there really is chronic infection. I truly don't think it's that the body can't eliminate the infection though...that would be immune deficiency, right? It's auto-immunity at play here. I just really don't know....sorry if I'm confusing you more
Great explanation. Let us not forget, however, that the biggest factor at play here is a compromised BBB.
Strep infections are just about as common as colds and flu, yet only a very few develop PANDAS. Why? It's pretty obvious to me that when the average person gets Strep, the BBB remains intact and the antibodies never gain access to the basal ganglia and the auto-immune response is never developed. Theoretically (and I think practically as well), once the integrity of the BBB is restored PANDAS goes away completely.
You can't eradicate Strep and some people are genetically coded to develop PANDAS once and only if the antibodies cross the BBB. If we could pick one thing to fix and that one thing was preventing compromises in the BBB, PANDAS could be cured or prevented in every case.
As always, I'm willing to consider information to the contrary. This is the way I see it.
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I think it also explains a little bit why Pandas kids get ocd, tics, or both...is there really much of a separation between the two?
TexasDad....google "Tourettic OCD" and "Dr. Charles Mansueto"----very interesting....
Yeah, that was pretty interesting. Looks like the distinctions among the subgroups aren't exactly clear cut. Thanks for that. : )
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JenniferG---I will try to explain...not sure I am correct in any way, but basing it on what I have read, etc...correct me if I'm wrong anyone...
Pandas is an autoimmune response to strep (or some other pathogen) in which the immune system mistakenly thinks an area in the brain (basal ganglia) is strep (due to molecular mimicry), causing inflammation, which then causes problems with signaling of dopamine, thus the symptoms.
Now here's where I get stumped---if the infection clears, I think in some people the body stops pumping out the auto-antibodies, and remission occurs until the next immune assault. I think in other people, once the infection clears, the body still sees the brain as an antigen, and keeps making auto-antibodies. And maybe in some people, there really is chronic infection. I truly don't think it's that the body can't eliminate the infection though...that would be immune deficiency, right? It's auto-immunity at play here. I just really don't know....sorry if I'm confusing you more
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This just still goes back to my big question----maybe the infections are cleared, and it's the autoimmune issue at hand. The immune system thinks the brain is an antigen and keeps making auto-antibodies, because the brain isn't going anywhere....and it's these autoantibodies that cause the issues and symptoms, right??
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TexasDad....google "Tourettic OCD" and "Dr. Charles Mansueto"----very interesting....
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My non-pandas son, when he was a toddler, and for years after, had to sleep with whatever thing it was he was addicted to. AT one point it was the case of his favorite video, which he watched over and over....another was his bee-ball frame (a picture frame with baseballs on it...and he was INTO baseballs)...hmmmm.....maybe he was/is pandas....sigh. I actually wonder about all 4 of mine....my 8 year old has a vocal tic that comes and goes, separation anxiety that comes and goes (though not much since we started homeschooling), evening up....and the past few months her pupils seem huge to me, but she has NO other symptoms, other than headaches that come and go, and her chest will hurt..that comes and goes too....why do the pupils get big?
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I have heard the term "turning back the pages" after IVIG. If I'm understanding it correctly, it means that kids actually get worse, and show more symptoms or a return of symptoms following IVIG.
My questions are: Does this "turning back the pages" happen with "normal, non-pandas" kids who get IVIG purely for immune reasons?
Also, is this just a term coined by one of the pandas docs that basically means "I have no idea what or why it happens, but it happens, so we will give it a name?"
And finally, WHY does it happen? Scientifically?
So the past 2 nights the coughing has been bad, and today she's running a little temperature again (100). Again, nothing big. But I've always been told that if a kid is sick...starts with a fever, fever goes away, but then comes back ... maybe secondary infection. So I am guessing this is turning into either a sinus infection, or even walking pneumonia. She had the latter a year ago, very similar situation. Sick, fever was better but congestion and cough stayed, then new fever. 
and trust me, the amount of academic work being accomplished during a 7.5 hour day is astoundingly minimal. Yes, they get social skills, but I believe those can be taught by having your child interact with other children in a smaller, more "germ-controlled" setting while healing is going on....
Probiotics and Exacerbation
in PANS / PANDAS (Lyme included)
Posted
KaraD---this just brings me back to the fact that it would seem that since the basal ganglia isn't going anywhere, that there will always be these antibodies circulating....right?