lfran
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Posts posted by lfran
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Someone just posted yesterday that the circulating immune complex is C3D, not the CD3 that everyone has been typing. Are they two different tests?
I ask, because just saw our doctor yesterday and he ordered "T Cell Panel CD3+, CD4+, CD8+, CD4/CD8". Is that the circulating immune complex? Or not????
Thanks!
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Hi all.
As I posted before, my DS9's Igenex results were inconclusive, so Igenex recommended retesting which I am about to do.
Any thoughts on repeating Basic Lyme or ordering Complete Lyme (includes PCR)? Also, any thoughts on CD 57?
His IGM: 31 and 41 were IND, 58 +
His IGG: 41 ++, 58 +
Also, can anyone recommend a good LLMD in Southern California?
Thanks!
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Thanks.
I contacted them about follow-up 31 kd testing, but they had discarded the blood already as it had been over 3 months.
I plan on retesting, just not sure which of the tests to do. I expect to have a game plan in the next few days.
Anyone else out there in Southern California? Any local resources or LLMDs to recommend?
My attitude about IND (especially for band 31) is where there is smoke there is fire. My first test was IND for band 31 and later my results were positive. I know others whose IND results were later positive or confirmed in the follow up test for band 31.
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Ok, I did some more searching, and I think that this is where the 58 kDa specificity for Lyme probably came from -- see Fig. 1. But, it is from 2003 and came from a google search -- I don't see it on Igenex's website right now. Any thoughts?
http://www.igenex.com/innovations3.pdf
Thanks!
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Thank you to those of you who responded to my post yesterday.
I have done some searching and calling and found a medical group in Torrance, CA that seems to have LLMDs on staff. Their website lists many bands that they say are specific to Lyme, including 31 and 58 (58 is of interest to me, as my DS had it in both IGG and IGM).
But....I can't find anywhere else that says that 58 kd is diagnostic for Lyme. Can anyone help me out?
Also, has anyone been to these docs?
Thanks in advance.
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Thank you so much.
Is there a good resource for the provocation testing that I can take to our regular ped? I'm with an HMO, so all LLMD visits will be non-insured, but our pediatrician is pretty open to working with us to get evidence, etc. That's why I was thinking the testing first, and then going to an LLMD if the tests were more conclusive. No rash, no confirmed tick bite (but his dad and I have both been bitten by tics during vacation activities, so it is likely he was bitten but we didn't find it. His main symptoms are tics -- no pun intended).
But I will put the calls out to schedule an LLMD appt -- I know how long these things can take and I'd like to be on their lists.
Thanks again.
There is a couple ways to go about retesting....
What we did with our son was put him on a 'lyme like' antibiotic protocol of Azithromycin and Alinia (cyst buster) collected urine on day 3, 5 and 7 after starting. We then shipped urine off to be tested for DNA of the BB. Lyme loves the bladder and is sometimes easy to shed into urine with right provocation.
You can have your Dr. call Igenex and have them run the 30-31 KDA CONFIRMATION http://igenex.com/Website/# on existing blood at lab. Unfortunately, test can be false negative but a positive will confirm presence of BB.
You can also do provocation. To do that you would need to put your son a protocol of Azithromycin/Omnicef/Alinia all size appropriate dosages or similar for three weeks and then retest.
However, with all of that said your son's results are suspicious enough that a good LLMD would help you to sort it all out and provide additional testing. Also a good Dr. might be able to more effectively target testing. i.e co-infections, etc.
With our older son they found the DNA in urine which is 98% accurate when positive. With my younger son, he showed positive for two co-infections but not positive for Lyme.
Hope that helps. Wendy
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Hi all.
I was active on the PANDAS board for a while, and then decided to try Lyme testing. Got the results pretty recently and my DS9 has IGM of 58+; 31 IND; 41 IND. His IGG is 41++ and 58+.
Igenex says this is negative but they nevertheless recommends retesting in 4-6 weeks or with another method.
But, they won't tell me what the other method might be. It has actually been more than 6 weeks since the blood was drawn, so I could redo the same test if need be.
So....any thoughts? Do these numbers seem suspicious? We just did the Initial Lyme Panel, without the PCR, since he was on abx at the time. He is not on abx right now, so I could re-order the initial panel, or the complete one, or....?
Thanks for any advice.
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We saw flare ups with tooth loss -- I think the initial episode was triggered by a tooth extraction.
I make sure my kids have antibiotics before any dental procedure now.
My daughter who has been having the trouble with rages and bad OCD even after starting the Zith lost
a tooth tonight. Could this have caused the flare up? And if so, why????
God bless,
Holly
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Thanks for sharing! DS9 is also mainly tics (OCD issues so subtle that I wouldn't notice if I weren't on high alert) and his anti-neuronals were all high normal, except for D2 which was 32,000!
What is the name/where do you get the neurotransmitter test that you mention?
Thanks!
I got the blessed opportunity to visit on the phone with Dr. C today. I sent her an email about my youngest sons elevated CamK and what we should do if anything for him, and I also wanted to ask her about my oldest son being put on penicillin post IVIG 2 weeks ago. She did respond via email and told me when she would be in her office and said she would try and call me. We played some phone tag but finally caught up with each other. She is so nice and so appreciate of the parent support she is getting and all the donations!!
We discussed our Immunologist putting DS7 on penicillin post IVIG and she said as long as he does well then that should be fine. We would simply need to address issues as they come up (i.e. change abx if necessary). She even mentioned talking to our Immunologist and that she is indeed coming to San Antonio in February (soonest she could get there) to help his team with the PANDAS protocol they are working on!
As for my younger son, she said that his high CamK did indicate activation of neuronal cells. Since he is still responding to immediate abx treatment (PANDAS symptoms improve with 10 day course) then his immune system is still functioning properly. She said it is likely that his CamK was well into the 200's during his strep exacerbation in May, but because he was not in exacerbation when the test was done, it is very likely that his Anti-Neuronal titers had already fallen to normal ranges and that his CamK was falling, yet still obviously very elevated. She concurred with all the doctors we have spoken with that for DS5, we must wait and see and treat promptly with abx and then follow up as necessary.
This made me feel significantly better about what we are doing for both of them.
She said my oldest sons presentation was pretty classic PANDAS and she asked me to send all their other labwork (urinalysis and blood) to her so she could have in their files. She said they really need this stuff as they are trying to put all the pieces together. I am sure she would like more parents to follow up with what is happening with their kids as it could only help what they are trying to figure out, right? She did confirm what some other Mom's have said, that the elevated AntiD2 is what they see in kids with more movements than OCD. When I told her about DS7's elevated Neurotransmitters (in particular Dopamine) she was adamant I send her the results. Like I said...they are trying to figure it all out so any information they can get is helpful for their study!
Lots of information I know, but just wanted to share as I was pretty excited to talk with her!
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Hi all.
DS6 non Pandas is a strep carrier (as are DH and myself). He has chronic sniffles and dark under-eye circles, but whenever he blows his nose, it is always clear, not infected (not green or yellow). Elevated ASO and DNASE, but negative swabs, which were done a couple of times. Usually one side is stuffed way more than another. No nasal swabs, though. Just throat and perianal.
No OTC meds seem to help -- I've tried just about every antihistamine and decongestant there is. Saline and other washes help very temporarily. This has been going on a long time, but has recently gotten a lot worse.
I have been hearing so much about sinusitis and strep here. Does this sound like sinusitis? I was figuring allergies, but I'm willing to try a different path. We have been to soooo many MDS for DS9 (PANDAS) that I hate to start the rounds of med treatment for another child, but it looks like I may have to. So far, what everyone has offered is flonase, but the warnings on the insert sound pretty scary (may interfere with growth and also may make more susceptible to measles and chicken pox, which is just what we don't need in a PANDAS house).
Thanks.
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I've been wondering about the language component too.
DS9 was a bit late of a talker, but a very early reader and writer. By age 8 and 9, he started writing really, really well. Complex thoughts, ideas,and vocabulary. An extremely engaging style. He started writing a book and a play on his own, and people have responded really well to them (and they weren't just being polite!).
However, when speaking, he often gets stuck in the process of getting words out, with a little hiccup-thing before phrases, and then he repeats the phrase. For years, I thought he was being thoughtful (as do my adult friends who hear him). Then, when he started writing so well, I realized there was a larger discrepancy between his spoken and written language.
This may be part of a tic, or it may be something more. I have a referral for speech therapy, but honestly don't know if I want to go that route. He is 90-95% better and we are all so tired of going to doctor after doctor and getting treatment and therapies. I've been warned by others that he may start to think that there is something really wrong with him because of all this. And he is so close, and does well in school, etc that I'm really not sure I want to rock the boat.
Thoughts?
from another post:
She kept saying "listen, listen" but couldn't express what was driving her extreme behavior
glad to hear your daughter is doing well!
Is there a name for that? My son does something very similar but he yells and whines "I'm trying to tell you something" while he may be sitting in my lap with my full attention trying to help him sort it out.
We met with a new psych today who I am hopeful will be more helpful than the last who was next to useless. I believe my son to be about 90% pre-pandas with issues being potty delay and what I call an inappopriate fight or flight reaction. I don't so much refer to it as "rages" b/c he really doesn't have an angry component - just extreme upset. Still, I think it's the same reaction others refer to as rages. When/If we are able to get to the bottom of the problem, I have been surprised at how reasonable his concern is, it's just the reaction that is over the top.
The new dr. was trying to engage him. He was answering her and then when she asked about foods he started answering with his mouth shut or humming his answers. (He is gluten-free, casein-free - so also could be anxious discussing food with a new person) She suggested having him tested for a delay/issue in expressive language. She said many times kids have this as an issue and it is never discovered until 3 or 4th grade or later b/c they have a very rich vocabulary and have learned to read and write with no problems. However, they have trouble, especially when upset, communicating it. She's seen kids really turn around behavior when this is addressed.
I find that interesting b/c my son was a very early talker with an extensive vocabulary at age 2 - fitting the pandas profile. Perhaps it's another piece of the puzzle? I don't know where language and/or expression is located in the brain - could it be affected by the basal ganglia? Could it be a side effect of basal ganglia problem? Could it just make a pandas issue so much more extreme? Not sure where if anything this will go, but thought it interesting to share.
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The teeth staining will go away with a dental cleaning! At least, it should. That's what the literature said, and that was also our experience.
When we noticed the teeth staining, I really freaked out. But DS9 was due for a dental appt anyway, and presto...it was gone.
Good luck.
For my 6 y/o daughter, it took a switch to Augmentin ES for the tics to reduce (we tried Azith. with her for 5 weeks. She is getting terrible teeth staining from the Augmentin, so Dr. B suggested trying Azith again to see if now that the tics are nearly gone, if it may work for her now. I'm afraid and instead for now we halfed the dose of her Augmentin (she's now taking 600mg/day).
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AWESOME!!!
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Isn't scarlet fever caused by strep????
First a recap of our first visit:
It actually went better than I thought. When we first started discussing why we were there, and that he was being treated for PANDAS - and the dx was confirmed by Muephy, he sort of got a smug, "here we go " look on his face. It didn't last long, however, because I just continued right on without letting him interrupt as to why we are treating the way we are (including the admission that if abx have any chance of working I'd much rather try that first than the alternative on my 2 year old.). When I pulled out what we now affectionately call my "crazy mom binder" tracking symptoms over the last 6 months -and correlating known strep infections at school that I think he realized I had done some homework.
He didn't completely dismiss the dx-which surprised me. He said the reason they're connecting pandas was the sudden onset -duh. But he asked if we've gotten titers run, and if we could share the results when we do. (that's somewhat promising I think). He also described that tics are associated with OCD and all the other neurologist crap. The good news is that he didn't think medicating was necessary for his tics, but he is going to run an EEG next week to make sure there are no seizures causing the tics, since they just started a couple of weeks ago(which is exactly why our ped sent us there).
So overall, while it wasn't a great a ppt, i had prepared myself for much worse.
Well, we went last week for the EEG, Bummy was a trooper, he did great! Everything came back normal.
I was at the pediatrician with my daughter today (she had a jfollow up for the ENT and they mentioned her throat looked red. Turns out she has scarlet fever - but that's a whole 'nother post!) while there, I gave him an update on my son. He said that he got a full report from the neurologist yesterday with the EEG results and his diagnosis, and to his surprise (and mine) he agreed with and confirmed the PANDAS diagnosis!
Success, one doctor at a time...we'll make believers of themall!!!!
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This is amazing.
Can you clarify re: the Cunningham tests, if above normal refers to the range or the mean?
Also, wasn't sure how to deal with the symptom list. DS9 has primarily motor and vocal tics. He has some of the other, but they are so mild that if I didn't know to look for them (thanks to this group) I would either never see them or pass them off as minor quirks of childhood or personality. I guess I'll put them in as co-occurring.
And, as for the trigger - I think that his was a tooth extraction that occurred w/o prophylactic abx. Can you add/expand the trigger question?
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Which probiotic are you using? I went to our health food store and they recommended this one for people on high-dose antibiotics
It's not cheap (about $1 a capsule), but it worked really well for us. I had three of us on abx and we had no stomach or yeast problems at all, and that's unusual for us. Also, when I switched to this from a different probiotic, DS9's bloating went away.
Thank you Marybeth!! I just want to try and be as informed as I can before deciding if more abx are warranted. I'm sure the doctor will want to run additional blood tests. The zith we started 20 days ago is starting to wreck havoc on her system giving her diarhia again. And of course, that increases her anxiety, which increases her seperation anxiety. I do have to say, that she experienced herxing when we first started the zith and at previous times when we tried it before (which may be a sign of Lyme). We also still need to run the Babesia Fish co-infection test.
Melinda
BTW- Is there a spell check here? anyone
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Thanks for the info.
How long does it take to get the Western blot results back from Igenex? Also, will they send them to the family, or just to the doctor?
Thanks!
We did the 6050 (Complete Lyme Panel... which includes the IGM and IGG western blots, PCR, and IFA tests), 5090 (Complete Coinfection Panel... tests for Babesia and Bartonella), 488 and 489 (31 kDA epitope test for IGM and IGG). 488 and 489 are only done after the western blot is performed.
There isn't a "CDC Western Blot" per se, they (the CDC) just use different criteria than IGeneX to interpret a western blot test as positive or negative for Lyme. Most labs that perform a Lyme western blot will only go by the CDC criteria to determine whether the test is positive or negative. The CDC developed their criteria for reporting purposes only. (Positive cases of Lyme disease must be reported to the CDC by medical practitioners.) The CDC criteria is very restrictive. IGeneX has developed their own criteria for determining a positive or negative western blot. They will show you on the test results whether your test is positive/negative according to CDC criteria and also positive/negative according to their own criteria. This article explains why the CDC criteria is problematic. http://www.lymenet.de/labtests/brenner.htm
My son's western blot was done by IGeneX and he tested positive on the IGG for bands 30, 31, 34, 41, and 58. He was "IND" (which is indeterminate) on band 39. The CDC requires 5 bands on the IGG for a positive result, but they require a different 5 bands than my son has. The interesting thing is that some of my son's positive bands are MORE specific for Lyme than the bands that the CDC includes in their criteria. So, his western blot test result from IGeneX showed that he was negative by CDC criteria, but positive by IGeneX's criteria.
I sought out a Lyme-Literate MD (LLMD) and he diagnosed my son with neuroborreliosis (neuro Lyme).
This board is actually what led me down the path of investigating Lyme Disease. Someone here posted an article about Lyme Disease presenting as Tourette's. It never occurred to me that my son's motor tics could be due to Lyme, even though he had tick bites 6 months prior to symptom onset. I have since found a number of references to Lyme causing motor tics and many other symptoms similar to PANDAS and Tourette's. I have also talked with other parents (on Lyme forums) whose kids have motor tics, OCD, ADD, etc. from Lyme. It's a horrid disease.
Which tests did you do through IGenex? Was it one of the packaged tests? When you say he was positive for bands 31 & 34, was that the CDC Western Blot or through IGenex? Did he have the 41 positive band through the CDC WB?
I agree with Elizabeth that your son should get the IGeneX western blots if you live in an endemic area, he has a history of a tick bite, or you just want a more conclusive test. My son was CDC negative, but he had positive bands 31 and 34, plus 3 others. (He was positive by IGeneX criteria.) As Elizabeth has mentioned, 31 and 34 are very indicative of Lyme, and my son had a history of tick bites 6 months prior to his symptoms starting. Band 31 has some cross-reactivity with viruses and IGeneX has methods of dealing with that, but they also have a 31 kDa epitope test that can confirm that the positive reaction at band 31 is due to borrelia and not some type of virus. My son was also positive on that test.
Good luck!
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My son was also at <0.3 for 9 of the 14 serotypes (and at 0.4, 1.2, 3.2, 6.0 and 27.3 for the others).
This seems to be a trend.
But...if the prevnar didn't contain all of these "strains", wouldn't we expect the kids to be low for the ones that weren't included in the vaccine? The notes that came with the test suggested that kids older than 5 should respond to at least 70% of the serotypes (which would be 9.8 out of 14).
Thanks for forwarding that thread. I am lucky I had been reading this board when I went to the immunologist a couple months ago and we decided to run these tests. If not, I would have just followed his advice and got the re-vacination, but becasue of something I read about vaccines and pandas kids here, I had decided to move on to another doctor.
Honestly, I didn't think much of the low numbers on the serotype test. The doctor almost expected them to come back low and prepped me that the next test(if low) would be with a vaccine. It seems pretty common that these are low? I'm gonna google that tonight.
How do we go about warning people (and doctors!) - maybe the diagnostic flow chart should have some warning, bcs it seems like alot of our kids fail serotype tests, and the immunologists' next step is to the prevnar (or other) re-vax. test. As a matter of fact - I gave him copy of the flow chart and the cunningham study report because he was interested in it. (not enough to become all that knowledgeable, but mildly).
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That's wonderful news. Congrats.
We are also in Southern Cailfornia, in Pasadena.
Would you mind sharing what the urine tests were that he ordered? And congrats again.
Thanks so much.
Hi Everyone,
I'm a newbie but have been reading the Tourettes and PANDAS forums for quite a while. I am writing this to say thank you from the bottom of my heart to all of you. You were there for me during the darkest moments of my life and never knew it. My dd(6) was diagnosed with Tourettes about 18 months ago. I was devastated and quickly starting looking for anything I could do to help her. Nothing, and I mean NOTHING I tried made a difference. Some of the things I have tried include: Natural Calm, probiotics, multivitamins, NAC, taurine, NAET for 1 year, Nystatin, Topamax, a chiropractic neurologist, and a corn free, dairy free, yeast free, gluten free diet that has left me making all the food my daughter eats from scratch (I HATE to cook!!). Despite all my efforts, I never saw any long-term improvement in her tics. She actually seemed to be getting worse. Our main issue is a vocal tic (a cross between a hiccup and a cough). When she's waxing I hear it all day long (every 3-5 seconds). I started out on the Tourettes board but somehow found myself curious about what PANDAS was. I read the forum like crazy and thanks to all your posts I began to see that my daughter may indeed have something else going on. When she started ticcing it was right around the same time she had a sinus infection. She wound up having 3 sinus infections in an 8 month period. She received antibiotics each time and the tics went away after the first two infections but not after the third. I saw two neurologists who both diagnosed her with Tourettes based on her tics and the fact that my sister's son was diagnosed with Tourettes (he is the poster child for PANDAS but that will have to be a different post). Both neurologists flat out told me there is no such thing as PANDAS. I didn't care because your stories were always there in the back of my mind and I knew the doctors were wrong. I thought a lot about making an appointment to see Dr. K or Dr. L but the truth is my daughter didn't/doesn't seem to fit the PANDAS profile. I went over Dr. K's checklist of PANDAS symptoms about 20 times. She doesn't meet the criteria. Her only major issue is a vocal tic and a mild sensory issue with clothing. No OCD (I love the list you created), no rages, no changes in handwriting, no separation anxiety, no sleep issues, etc. I was afraid of being laughed out of Dr. K's office and spending thousands in the process (I live in CA). However, one day Phasmid posted about seeing a doctor in Irvine named Dr. Lin. I figured he's practically in my backyard so what do I have to lose? I almost fell off my seat when he said he thought there was a 75% chance that she had PANDAS. After ordering some blood work and a urine test we found out that her Anti-DNASE B strep antibodies were elevated (not her ASO) and she had extremely high levels of yeast (despite the anti yeast diet we have her on) and clostridium. Dr. Lin diagnosed her with PANDAS based on her lab work and history and started her on a treatment plan. She is currently on 5ml of Azith 2x/day (200mg strength), Flagyl (we just finished 2 weeks on it) and Fluconazole for 2 months. The improvement I have seen is TREMENDOUS! In the back of my mind I am terrified of losing the gains we've made but for now I'm breathing again for the first time in 18 months. I still have doubts sometimes that she really does have PANDAS but at this point I don't care what she has. She's responding wonderfully to treatment and that's all that counts. The bottom line is, without all of you she would never have been diagnosed. You have made such difference in her life and in mine. Thank you all for being so brave and for sharing your heartache, pain, knowledge and especially your moments of triumph. You have given me back something priceless that I never thought I would ever feel again...you have given me back hope. May god bless all of you!!
Caring Mom
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Huh...my DS9 can never decide what to buy in stores either...but fortunately he's usually okay with not getting anything, since he can't make a decision. I didn't realize this might be a more common problem.
So we just got back from a 5 day trip to Maine, which honestly I was terrified of! Actually, aside from the expected misery during the long stretches in the car, it wasn't bad at all. DS7 did enjoy the change of pace and different scenery. There were issues with wanting to buy things every single place we went and not being able to decide what he wanted. But overall, MUCH better than I had thought it would go. And really, I should say, the ride home today (all 12 hours of it) were much better than I would have ever thought.
Big issue though - DS discovered shellfish and LOVED it! However, it doesn't love him! He had a bad allergic reaction and we ended up in the ER in Boothbay last night. Upon returning home tonight, we ended up in our ER tonight. He has such bad hives that I'm really scared for him. His joints are all swollen. Last night it was his one foot and he couldn't walk well - tonight his hands.
So this leads me to two questions... Do I have to question the fish oil supplements? I was going to call the nutritionist tomorrow to double check. I can't tell anything by the bottle.
And... the ER doc tonight prescribed steroids (and also gave him an epi shot
). Dr. T had said we should try a steroid burst upon returning home from vacation to see how it effects him. What is the usual dose for a steroid burst and how long? I'm wondering if I should ask Dr. T to work off of this 5 day RX from the hospital rather than running this out and then starting again shortly. -
I re-read your post, and I read your post wrong. Sorry.
In case anyone wants it, here is the link to the Igenex tests as a PDF. It's part of what they send you in te mail. http://igenex.com/files/PATIENT_TEST_REQUEST_FORM.pdf
I am learning so much about lyme lately, and am going to be getting my son tested.
I am now reading (on another post) that Quest is not drawing blood for other labs, so I need to call around to find someone to draw the blood. Does IGENEX send a kit (like the Cunningham test did)?
Also, I saw that residents of New York State CANNOT get the basic lyme panel (BASIC LYME PANEL 4090 Western Blot IgG, Western Blot IgM, Lyme IgG/IgM/IgA Screen (IFA)**) and CANNOT get the complete lyme panel (5090 COMPLETE CO-INFECTION PANEL Babesia microti IgG & IgM, Babesia FISH, HME IgG & IgM, HGE IgG & IgM, Bartonella IgG & IgM)
New York State residents can ONLY get the initial lyme panel (5010 Western Blot IgG, Western Blot IgM, Lyme PCR-Serum, Lyme PCR-Whole Blood)....
What is that about?? Why would one State limit what you can get... and is the initial lyme panel going to tell me anything?
Any thoughts are appreciated!
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We just did the Igenex test Monday. I chose the basic one because the difference between the basic and the 4050 is the PCR analysis, which you can't do on antibiotics anyway (have to be off abx for 10 days, they said when I called but which they DON'T say on their literature). So, since DS9 is on abx and isn't coming off them anytime soon, I saved the money and did the one without the PCR -- which is the one available for NY anyway, if I'm understanding it correctly.
And thank you to whoever posted recently about the abx and lyme testing. Otherwise, I would never have known to ask.
Thank you all for your informative responses! I will request a kit, call blood draw sites for one that will help us, read the online article (already started - thanks! very informative), read Unknown Cure (online reviews look great), and say a prayer for all the families dealing with lyme who are going through all of this and who have paved the way for me.
Thank you all! You are the BEST!
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My younger son (now 6) had all but one of his DTAPs and I didn't want to give the last one. I asked for titres to check his immunity and he was fine.
So you may be fine, also.
Good luck.
Thank you for all your answers. I compared her vaccine charts to my boys. It seems she's due for the second MMR, DtaP, polio. My boys got those at 5 years old so perhaps I won't even have to make this decision at her 4 year appt. I read somewhere you couldn't pick and choose but now that some of you said you can, I will weigh that possibility more. I agree, that I do not feel comfortable AT ALL with a live vaccine. The question is the polio and the DTaP. I also wonder if they will try to push a second pertussis now or if they have now added a rotovirus.I don't know about that.
I know some kids have had negative reactions to the DTaP. I believe that was the vaccine that injured the son of the president of NVIC. I don't know if we have a separate tentanus vaccine available here. I guess I have a lot more research to do on the specific vaccines.
I think I will ask for titer tests to check for immunity as well. If she is immune, I will feel a sense of relief and have more in my arsonal if ceratin family find out we chose not to vaccinate. I think we will have to keep that decision private.
My ped didn't flinch when I passed on booster chicken pox and flu vaccines for my kids so I am hoping there isn't confrontation if I pass on vaccines for my daughter.
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In California, you *can* pick and choose, at least in the recent past.
You sign an affidavit saying that you have a philosophical exemption to some or all vaccines. In my experience, the schools won't ever offer it to you and won't even tell you about it, but when you ask for it, they hand the form right over (at least, they did at both our private daycare/preschool and the public elementary school).
Some PANDAS kids do have exacerbations with vaccinations, esp if the child has an active infection or isn't full recovered. I do not plan on doing anymore vaccinations on my older boys (one PANDAS, one not). What my concern is what if she has the predisposition for PANDAS and it just didn't surface the last time she had strep. I'm also wrried about activating an immune system in a girl who has a family history of autommmune disorders and PANDAS in particular. Also, the MMR is one vaccine scheduled. I'm worried about that one. If she did get that one, that one is live, right? Does it shed and would my PANDAS son be exposed? Am I worrying too much? My husband said it's my decision what we do. I don't think you can pick and choose when it comes to declaring an exemption.
). Dr. T had said we should try a steroid burst upon returning home from vacation to see how it effects him. What is the usual dose for a steroid burst and how long? I'm wondering if I should ask Dr. T to work off of this 5 day RX from the hospital rather than running this out and then starting again shortly.
Starting treatment
in PANS / PANDAS (Lyme included)
Posted
Hi all.
Quick Igenex recap for DS9.
IGM: 31 and 41 were IND, 58 +
IGG: 41 ++, 58 +
As the first step on our journey, I located an MD in our HMO who was recommended for Lyme. He hasn't seen tons, but he has seen more than anyone else. Based on constellation of symptoms, Igenex results, and our vacationing habits, he diagnosed Lyme and started DS9 on azith 250 mg for 21 days (DS9 is 83 pounds) and then said to check back in. He also ordered TCell panel and CD3+, CD4+ etc. (DS9 is actually remarkably healthy in terms of not getting common illnesses).
I know this is not long-term enough treatment -- but it's a start and I plan on moving forward. I asked him about adding Flagyl and he is going to get back to me.
Can anyone comment on the dosage and drug choice? And on any literature I can give him re: Flagyl (or anything else!)
Since he is about to start the antibiotics, I am also interested in doing the provocation test with Igenex, for my own peace of mind. Also, can anyone weigh in on that (for instance, if I get a negative, I might drive myself crazy)!
I do know of a couple of LLMDs outside our HMO that are in our area and I am also looking into that.