GraceUnderPressure

Chemar, is that just for negative comments or all comments in general, including neutral & positive?

Thank goodness! I've been agonizing because we paid just shy of a thousand bucks out of pocket for an EEG to meet his deductible (I picked a great year to go with the higher deductibles ) and it would really hurt to meet it again so soon. Gotta dig up that paperwork... (unfortunately the state of my house reflects the state of my mind plus 5 stay at home kids & an oblivious DH - which is to say TOTAL CHAOS! )

I need to dig up our paperwork on our plan to see what our out of pocket max is, but it is probably similar to y'all's. If our enrollment date is in June of each year, is the insurance's fiscal year still likely to begin with Jan?

I understand that United Healthcare covers IVIG & we have a doctor willing to do it. But the amount our ds18 will get costs $15K. If our plan is the normal 80/20 kind, is this something that we will have to pay 20% of? That's still a lot of money! We can swing it once, but we'll be broke after that & as long as ds has had it, odds are good we will have to do multiples! How do we afford this?

We did IgG testing (ELISA) and it came up positive. I checked on the poll that we saw some improvement of his PANDAS symptoms, but actually what we noticed was that when we eat good, healthy food from scratch, & then splurge & eat junk food, it exacerbates ds18's symptoms (esp pizza, which is hard because we are pizzaholics). So it wasn't so much that gfcf made him better as it was that it didn't add on to his problem (took an additional burden off of his immune system). Lately, since ds's symptoms have gotten so bad, we no longer notice a difference. I'm afraid that means that his immune issues have gotten so bad that it's now less than a drop in the bucket.

Ok, so we need to rule out whatever possible sources of infection that we can before we try IVIG - sinus infection is definitely possible in ds18's case. So how do we go about determining if there is one & how are they usually treated?

While our family dr is not a family member, our solution - modified where needed to fit your situation - might be helpful to you. We did not tell our family dr that we were going elsewhere or consulting another dr - we just kept things more or less business as usual, & whenever something came up that made it necessary for us to mention the PANDAS dr, we simply talked about a specialist that we were seeing for our son's immune issues. (My ds18 has Tourettes with OCD triggers, but we simply vaguely refer to his impaired immune system) [We have used the specialist/impaired immune system as our excuse for not immunizing, but we homeschool, so fortunately, it's not a major issue for us.] If you have to address the subject with her, you might even word it in such a way as to discretely make it sound as though you were concerned about continually imposing on her or presuming on the family relationship or something to make it sound like you were acting out of concern for your relationship with her rather than mentioning your dd's treatment. But the less information you volunteer, the better, IMO.

We had those done last month. What are your dd's sx's? OCD? Tics? Anxiety? My ds18 mainly has tics that have ocd triggers. He had low serotonin & gaba, along with high on all the excitatory transmitters except glycine, so we added supplements to increase serotonin & gaba, plus we went ahead & agreed to try the zoloft to see how much of a factor the low serotonin is in his case. Not sure what you do when those two inhibitors are elevated on top of everything else - usually when the one group is raised, it helps bring down the others (normally the body uses them to maintain its balance). What were the recommendations given by Neuroscience?

Thanks, I would really love to hear how she does! You're seeing Dr. R in Dallas, too, right? I should have mentioned that we had an Igenex panel done & everything was negative, but somehow Lyme got left off! We figured bartonella was a much more likely culprit than lyme, though, (flea exposures, yes; tick exposures, no), and since that was one of the negatives, decided not to bother paying out more for them to add on the lyme test. DS18 reacts to viruses as well - what can be done for that? He had pretty high titers from his MMR shots - esp rubella which came very close to the "alarm bells" level. Seems like something has his immune system set on hyperdrive when it comes to viruses. Almost all of his neurotransmitters were out of whack. All of his excitatory ones were above normal and all of his inhibitory ones were below normal - gee, maybe THAT has something to do with why he's ticcing all day long. Dear Lord, grant us the healing we seek for our children! (And the ability to afford it!)

I am trying to figure out what we should do. As mentioned in my other post, we got our result (singular!) from the Cunningham tests & the Cam Kinase was 146 which the dr. said was not really significant, esp since all the other strep tests & my ds18's symptomology are negative for strep. I actually believe my ds is a PITANDS not a PANDAS and told the dr as much - that I had expected it to be myco because my ds7 had had all the sx's of it. I was surprised when my ds18's myco test was negative on the IgM, but it was positive for previous exposure on the IgG. However, my ds7's myco tests were negative on both so I'm at a loss on this whole mess. We recently got hit with another(same?) bug: sore throat followed by sinus along with some nausea & upset stomach. DS18 has not gotten it, BUT his ticcing has gotten worse. (And ds7 got a mild case but has increased anxiety & started chewing his shirts again) Dr said he would give us doxycycline to try, but I noticed that it's the anti-inflammatory dose of 100mg, not the higher antibiotic dose. Dr also surprised me by saying that we could try IVIG, said he has gotten good results with using Dr. K's two days in a row protocol. And I have only to let him know if I want to try it. But aren't all infections are supposed to be addressed before doing IVIG? We haven't checked ds18 for clostridia & sinus infection is DEFINITELY a possibility as he has had sinus allergy issues since he was an infant - relatively mild, but pretty constant. This is so ironic with all the brick walls out there! It's almost like being handed a blank check! But as I told my dh - I feel like I got into a car expecting the dr to be the driver & suddenly find myself holding the wheel. I have little clue where we're going or how to get there!

Went to our dr. in Dallas yesterday, eager to see our Cunningham test results. All they had sent back to the dr was a paper with the Cam Kinase results & the control numbers. The dr said he would try to get them to send the rest of the numbers, but when his nurse called OK, they said their tech was in FL & now we have to try again Monday. How are the rest of you getting anti-dopamine numbers, etc?

So is this in itself enough to confirm that my ds18 has PANDAS (or a PITAND)?

We have our followup appt in Dallas next week & I called to see if the Cunningham test results would be ready for us this time. Happily, they are there! I asked what the camkinase result was & they said 146. I realize that the other results will give a fuller picture of what is going on with my ds18, but wanted to know what limited info this cam k result can tell us? (Sorry, I did a search, but couldn't find the info that I am sure has been discussed here umpteen million times already) ~Grace

Go to The Autoimmunity Research FoundationClick on "What is the Marshall Protocol?" on the left hand side. Y'all will probably find Marshall's"Evidence Page" interesting for some of the research collected there (though hardly persuasive of his "suppress vitamin D" treatment hypothesis)

SearchingMom, I empathize with your hesitation - we wrestled with it for a while, too. My ds18 finally got so bad that DH & I decided we had to do whatever we could to help him. You will naturally want to weigh it against your own personal situation, & the Cunningham tests are not cheap, but if you can afford it, IMO are probably worth it even if they come out negative. At least you will know whether or not that particular avenue is one you should be travelling. We went ahead & decided to do the full Igenex panel as well, but our ds18 is ticcing so badly that he is barely functioning anymore so we're definitely up against a wall here. Anyway, you might be happier seeing Dr. Rao in Dallas. He's not one of the major PANDAS drs, but at least he has a lot more experience with these kids. He is treating my son as a patient rather than a protocol, if you KWIM. ~Grace

I was startled when Amy Proal spoke of 'stimulate don't palliate'. Stimulating the immune system of a patient fighting autoimmunity has long been believed to be negatively provocative & contributes to further autoimmune development. It does seem consistent with our family's medical history. So far as I can tell from digging around online, Marshall's hypothesis & treatment regarding the VDR do not appear to stand up to scientific scrutiny. He is an engineer, not an MD, accused of basing his hypothesis entirely on a computer model with no lab research & support only from anecdotal reports from volunteer patients. Weston Price this is not. The support forums for those following the Marshall protocol are accused by former posters of suppressing & censoring any negative & critical posts. Such critics are dismissed as not having followed the Marshall protocol strictly & properly. As long as this has apparently been going on, I'd think there would be some kind of supportive clinical data available for peer review, but Marshall does not seem prepared to submit to any form of peer review which sets off further alarms. I haven't totally made up my mind, but I am skeptical - the earmarks for quackery appear to all be there. The successive infection - multiple symptom overlap hypothesis Proal mentions, however, does apparently have some support. (And certainly seems consistent with what a lot of us have experienced!) That's the one I am still digging around online trying to find other sources for. If I find anything more, I'll post it here & I hope others will do the same!

Dr. Infante was gracious enough to reply to an email inquiry of mine a few months ago. He sounds very kind & is clearly eager to help, but is definitely new to this. He is currently trying to work up a protocol for PANDAS patients at his hospital. I don't know enough about this stuff to know what is standard, but I was put off that he spoke of SSRI's as being the 1st line of treatment & defended it as being the standard treatment per Drs. Cunningham & Swedo. I was also dismayed that he spoke of getting video footage at the clinic - my ds18 put me thru all kinds of heck trying to get video clips of his "habits" to show to the neurologist -- and that was at home! It was mind-boggling how he could stop in the middle of all those tics if he saw or heard the camera! And they think he is going to perform for them/total strangers at a clinic? I thanked the dr for the generosity of his time, tried as politely as I could to express my reservations about the protocol, and called a dr in Dallas instead. Hopefully, Dr Infante has reconsidered those things. My impression is that if you have a child with the classic PANDAS presentation - particularly positive strep titers & sx's - he will probably be of help. If yours is not a textbook case, you will want to find someone who has a lot more experience - esp if your child may be a PITANDS rather than a PANDAS kid. ~Grace

Thanks, Michael! We've actually been on OLE for a while now. I've been wondering if we should either take a break from it or up the dose. I'm not quite sure how to compare it to Stephanie's recommended strength. It's Solgar's brand & contains: Standardized OLE (leaf) oleuropein 14mg (6%)- 225mg Raw olive powder (leaf) - 225mg DS18 is ~140lbs & has been taking 2 of those capsules AM & 2 in the PM. I'd appreciate any opinion's!

Don't hate me, but I have read in a couple of places that the protein in soy resembles the protein in wheat closely enough that an allergy or intolerance to the one predisposes you to developing an allergy or intolerance to the other. I have also read that soy is hard for the body to handle unless it is fermented (ie. soy sauce & such) which supposedly is the only way the Chinese ate it traditionally (don't know about modern times). You might want to do some google research on soy. I think the Weston Price Foundation was where I saw the info about not eating it unless it's fermented. I would definitely try to avoid eating it every day. As much as it sucks to find out now, it's worse finding out after you go to all the trouble of changing your diet & then learn that you have to change it all over again. (Been there, done that a time or two ) Hope you don't mind me asking, but I'm wondering what do you do to get your B12? Sounds like we can only get a significant amount of it from animal sources. My ds18 definitely has no problem eating meat, but his body does not digest it well apparently, & his B12 is low along with his serotonin & GABA. I looked it up & sure enough B12 is directly used in the body's mfr of serotonin & indirectly for other neurotransmitters. Apparently B12 deficiency is common in conditions that affect the neurological system - probably because of all the stress the body is under is my guess.

We went ahead & started my ds18 on zoloft this past weekend as the dr wants to see if increasing serotonin makes him better or worse. My son's serotonin is definitely low & the dr said that increasing it would allow us to see if there is an autoimmune issue there. We started Saturday night with 12.5mg (half of a 25mg tab) and are supposed to go up by 1/2 a tab per week till we reach 50mg. So tonight is only his 3rd dose of 12.5mg. My son says that his brain feels less fogged, but his habits (tics) are worse. He definitely has been ticcing worse. I know I need to call the dr's office & ask at what point we should go ahead & assume that it's the drug making things worse, but I would like to hear y'all's experience/opinions? And did any of you see things get worse & then get better with an SSRI?

Well, the Dr's office took my ds18's blood sample on 9/9 so hopefully that means the results will be waiting for us when we return on 11/18! On the positive side, let's hope the huge increase in demand means the poor kids who are suffering from this form of autoimmunity may start receiving better help sooner as funding is more likely to be found where there is demand. chodnett, we are seeing Dr. Rao in Plano. He is a DAN! doctor (Defeat Autism Now!). Don't know if you're familiar with it, but those are medical professionals whose practice focuses on functional medicine - treating the specific needs of patients as individuals. I was just telling my DH, I remember when medically they used to say 'Treat the patient not a lab value' or something similar to that. Now it seems that most medicos are treating protocols instead of patients.

Yeah, IT has hijacked our ds18's body, whatever IT is. It's as if he is possessed except that his consciousness is still there. And in the process, IT has hijacked our entire family because IT impacts everything - absolutely everything - we do anymore. I took my 2 of my younger kids for a walk in the park last week while the other 2 were in classes at the science museum, leaving my ds18 at home with his dad, and nearly cried when we were talking about how nice the day & the park was & one of my son's said, "yeah, and it's nice that Alex isn't here". I knew he meant that it was nice not having to wait for his big brother to finish ticcing every time we got in or out of the car & not having to be totally quiet every time a series of tics hits him because even the sound of a sigh will make it 5 times worse (& 5 times longer). And I explained to him that we need to remember that Alex and his problems are not the same thing & we want to be careful not to treat them as if they are so we miss Alex, but we just don't miss his problems. And I couldn't help but think how much I really do miss my son because I so rarely get to be with him without IT getting in the way. God bless all you moms & dads here! It has been such a lifeline to be able to connect with other parents who understand what we are going thru! Some days I think surely my sanity cannot take much more of this, but then I think of you all & do my best to switch gears & pray for all of you out there who are suffering, too!

Went out to Dallas yesterday for our followup appt & was so disappointed to learn that the Cunningham test results were not back yet since that was the one that we were the most interested in. Does anyone know how long the current process is taking for results to come back or if they are getting caught up?

My impression has been that the longer the child has had it, the more likely they are to do repeat treatments? Can someone tell me if that's correct? My ds18 has had sx's since 4 so if his tests come out positive (we go to Dallas Thursday for followup results - I'm a mess of anxiety & dread), and we end up going this route, well, it's looking a bit daunting (though nowhere near as scary as having the results come out negative and still having a son who is a dysfunctional mess without even the hope of some sort of treatment).

My ds18 (who we are currently in the process of screening for PANDAS/PITAND so we don't know yet if that's his dx) has, with our most recent exacerbation, become very sensitive to light & has difficulty looking at things full on - esp. eye contact. He had similar issues years ago, but they went away as we were working on diet & supplement therapies to help him, now they are back & much worse than they were then. Whatever is going on in his body, the vision issues are definitely related in our case.