bgbarnes

I am interested as well- I have been sending myself emails from my two different accounts so I can date and record it when we have "episodes" or ramping up or adding of new symptoms but I think I will start a more formal system- there is just too much to keep track of! I have started keeping all my medical records and test results in a 3 ring binder- so I can pull out studies and test results to any doctor I see. One of the Dr's took copies today of several different tests to see if they could come up with anything else that might be going on! Probably will start a dated diary- maybe a spreadsheet. Brandy

Apparently, not anymore. At AO conference, Dr. B. confirmed United has ceased to cover IVIG with PANDAS diagnosis, which backed up an experience here on the forum a few weeks ago where someone had it initially approved for payment by United, and then renigged upon in the end. Stinkin' insurance companies . . . . . Seriously United Healthcare stopped covering IVIG for PANDAS- crap!! We have not gotten to that yet- but I know we are talking about it next week and was not planning on it being a big issue b/c we have United.... AHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!! Brandy

Kimballot- When this bumped up I realized I never answered- He can hold them straight- this is just something I think he is compelled to do...as I said yesterday- I think I can officially say we have OCD issues now...dear God help! Brandy

I have not gotten my mailed report either. Brandy

My ds is functional behavior, moody, sleep issues, impulse control, anxiety , ODD, ADHD symptoms are what we have considered his main problems-( that is until I realized he has to touch things evenly on both sides of his body last week so I feel like I analyze his every move now- from what he says he has had it for a while- he calls it his "addictions" he just never said anything and hid it well) but I also know he is not where he should be-not by a long shot- so we have many of the same issues you have. I personally am glad I did the Cam Kinase- and we were not in exacerbation when we did the test- I just knew it was going to be positive- about a month after the exacerbation that led us to PANDAS 2 months ago. Surprise- we tested in the Pandas range-no question- for me it has helped when talking to the school & other Dr's- they may not know what the test is ( I have also worked hard at educating all of my Dr's about the test b/c it helps create awareness)- For the ones that did not know about it I pulled out the study with the graph and plotted where my ds is- and every Dr I have talked to now agrees. It is the proof I needed to keep moving forward. I am still testing for a million other things too but I have a piece of the puzzle. From what I understand Dr K is going to want the test at some point if you want to pursue treatment with him. Our consultation is on the 25th and I wanted to have as much of the testing done as possible to have the most informed meeting possible. Good luck! Brandy

BRAVO!!! Well said! I hope they print it- let us know!! Brandy

Kimballot- Thank you so much for your input-I will definitely pursue the sensory route too! Yes I feel like he has sensory issues- I have read about 1/2 of out of sync at this point and identified with a lot of what I read- he is the stimulation seeker. Since we are 2 months into PANDAS and 1 month into dairy allergy and testing for God only knows what else- I have been holding my breath until summer and was planning on consulting an OT. I have plans to make him a weighted blanket in the next week or so too- He loves deep pressure and would be held all night long if I let him. We are switching schools in the Fall- to a school that has another PANDAS child- and handle it very well. Can the school system do an OT evaluation during the summer? I think the thing that is baffling is I have been in Drs offices for years asking what is wrong- we have done play therapy, social skills classes and no one- no one ever said anything about sensory issues and now that I know about them I see it! DS was very overstimulated at the school party and actually asked to leave early- if he was around another kid- his hands were all over them- like there is no concept of the the strength of his touch. The great thing about ds is if someone does something to him- he always says it was an accident and never tattles- I have asked him about that and he says- that's just what friends do- if only he was so lucky!! This is the summer of answers and solutions!! Turns out DS got sent back to class because it was a 50/50 deal- but the little girl did not have to go to the office.....Don't know if my email had any impact but at least I got it off my chest. ON the down note- as ds was walking towards me he had to touch the chairs on either side of him with his elbows- he has developed " some addictions" as he calls them- mainly having to even out touches on both sides of his body- he says sometimes it has to be a pattern....I thought we did not have OCD issues- now that I am aware I find out he has just been really good about hiding them and never talked to me about it before.... Brandy Brandy

I am so ready to be out of school and switch schools next year!! My ds's Birthday is today- 8 now- yea! However he is wired for sound- going 100 miles an hour and has been a handful- not uncommon for many 8 year old boys on their birthday but mine ramps it up a notch- I am sure you all know what I am talking about. So a little girl grabs his shirt and chokes him on the playground and he pushes her in the stomach to get her off of him( he admitted a little too hard)- she cries to the teacher "doubled over" and says my ds HIT her and guess who ends up ant the principals office.....NOT the little girl that choked my ds. She had to sit out but not go the principal- my sons reaction was seen as physical violence and her's was not.... Since my ds has PANDAS and his Basa Ganglia is compromised at this time- which controls the flight or fight response- I think his reaction was pretty normal to feeling threatened or choked and considering how it could have been since he has PANDAS and Aggression is one of his main issues-we got off light- I think he may be ramping up in symptoms right now- not sure b/c I am so new at this.... I feel so bad for him- I sent a letter to the teacher and principal crying discrimination without using those words if the girl was not in the principals office too and asked for suggestions how my ds could have gotten out of hte situation without placing his hands on the girl who initiated the problem too. SO I am headed to the school for the end of school party and I will be escorting my son to it-I would like to see them stop me right now.....Can I please just get through the next few days without a call from the teacher or principal??? Brandy

What tests did Dr K want to see- trying to get them out of the way- our consult is June 25th. Brandy

Sorry to hear about your other son- but at least you know what to do and are taking action! Sounds like you are getting a great little network of Doctors in NC! I have a sorority sister in Sparta (we went to UNC)- who is a Dr and I found out this week she has had a couple of patients with PANDAS. Because of my Facebook postings for the PEPSI voting she is going to look into and see if there are a couple of her patients that might be consideration for it. She did not know about the Cunningham test before this past week and wants me to keep her updated. She says she needs to learn more- who 2 cases were mild- but she is willing to look into it more! I spoke to her today that we need every doctor willing to help! Brandy

MY ds is a BIG sweater- and at different times would be drenched at night just like yours- do not have any correlation to exacerbation b/c we have just started this journey of being diagnosed PANDAS a couple months ago- even though I think my ds has had it for 5 years now( been going through medical records and I can start to pinpoint the onset down now). I have been giving epson salt baths a couple nights a week now(especially if he has had a meltdown). I think they have a really good effect too! He sometimes talks SO FAST that it is difficult to understnad him- I will have to have him repeat himself several times and mumbling. He also will speak WAY TOO LOUDLY!!!!!!

What do you mean by nonsense talk- my ds teacher thinks sometimes when he is talking ( to himself) he does not realize he is talking----we don't have tics but I a wondering if that is similar. We definitely have the crashing into furniture and people- wrestling friends until he is annoying. We have never been to an OT- but was thinking about it- now I am wondering if it is all PANDAS and he has more sensory issues than I realized. Brandy

I would let Kathy know you need it by June 15th- I would send today- they run on Tuesdays every week. Good Luck!! Brandy

Thanks! That is really how I feel- it is still scary but at least I am on the right track- Gotta love the Mommy intuition! This board and all of you have made it SO MUCH EASIER!!! Brandy

Hi Brandy Best interpretation of indivi. scores is given looking at the graph on the following article (here is the link:) http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf As so many have pointed out the CamKinase is an indicator of neuronal activity. Here is a very helpful thread -- read down and you will see a collection of threads on the results-- http://www.latitudes.org/forums/index.php?showtopic=6266 Hope these help-- Thank you! Kathy emailed me the graph a few minutes after I posted and I guess the results are exactly what I suspected- in PANDAS range....now for hte rest of it and to figure out what to do next! Brandy

Kathy- just emailed me with preliminary results from the Cunningham test- ds got a 163.... any interpretation would be helpful- Brandy

We have a positive on 41 too....

WornoutMom- I am right there with you- we did not test significantly to any allergies but I KNOW my ds has them. did you have his overall ige level tested? Ours is elevated but no significant allergy is showing up- maybe that is a place to start to see if there is some allergic reaction going on. every Spring my son's behavior shifts- it has to be allergies! I am going to dig make through look at what was high on the pollen count when his behavior shifts or is feeling bad to see if I can deduct what might be causing the problem....MORE research! Then I will cross reference that to what was tested and see if anything was missing from the 84 prick test. It's all I can think of! good Luck! Brandy

PANDAS is thought to be caused by three things: a genetic predisposition to an abnormal immune reaction the creation of antineuronal antibodies as a response to an antigen (i.e. GABHS) ability of the antineuronal antibodies to cross the BBB (e.g., due to inflammation or high blood pressure or ...) The exact mechanism in #3 is not known, but inflammation seems the most likely culprit. Abnormal levels of eosinophils are common in those with allergies (and asthma) and these cells degranulate to release an array of cytotoxic granuals and inflammatory cytokines ( IL-1, IL-2, IL-4, IL-5, IL-6, IL-8, IL-13, and TNF alpha). If the anti-neuronal antibodies are still in the blood stream (they seem to have a half-life of 28 days), then eosiniophils and other diseases that increase inflammation of the endothelial cells can allow these to cross the BBB. This is why symptom exacerbation could be due to other sources of BBB inflammation -- not because they produce the antineuronal antibodies (i.e., not #2), but rather because they allow the antineuronal antibodies to cross the BBB. So to your question about antibiotics. Some antibiotics (such as macrolides) are anti-inflammatory and immunomodulating. They tend to shift the immune reaction from Th2 to Th1 response reducing inflammation (i.e., address #2 above). Azithromycin falls in this camp. There have been reports on this forum that high-dose augmentin is also anti-inflammatory but I don't have a good reference study there. What might be happening (just a guess) is that augmentin is acting to stop residual spread of a GABHS infection, reduce the superantigens that creates significant inflammation, and by treating this underlying trigger, reduces the antineuronal antibody production such that there isn't anything in the blood to cross the BBB. It is important to remember that antibiotics don't kill GABHS, they essentially prevent rapid spread of bacteria so that the bodies immune system can eradicate the bacteria. If your child's exacerbations don't seem to correlate with GABHS/mycoplamsa infections/exposures then probably other treatments might work better. For those who do have correlation with GABHS exposure/infection, antibiotics seem to keep the severity of symptoms in check. More research is needed to know for sure, but that's what we think at this point. Buster Thanks Buster! I know my son definitely gets exacerbation from Strep- no doubt there- its just I know every Spring he changes and the allergy test did not really show up any serious allergy even though his ige is elevated- knowing that allergies are not bacteria- trying to figure out how to treat that side of it! Thanks Brandy

that is the problem....the goal is to get the bb to close and keep away allergens, which is virtually impossbile unless you only have food allergies... i think the problem becomes autoimmune, where even if the infection is cleared...the body is in such a fight mode, it is still fighting itself and remaining inflammed on its own accord...you've somehow got to get the body to slow down..... that makes sense as to why IVIG is an effective treatment-rebooting the immune system to work properly...still waiting for our Cunningham results to see if we go to IVIG.....I can guarantee my son is greatly affected by allergies even if his skin test does not show it! BRandy

I am trying to wrap my head around antibiotic use if the exacerbation was flared by allergies or a virus- which we all know can happen once the BB has opened. What does the antibiotic do to help since it is not from strep? Thanks Brandy

Your timing is great- where in Dallas? I am in Plano. if you can get free Monday night- we are having the first DFW area meeting for PANDAS it will be in Frisco. There are a few women who have been around much longer than I have ( I am still pretty much a newbie) who have been a great help to me that live in the Plano area too. They will help better with Dr's as I am still sorting that out- waiting to get my Cunningham test results before consulting with a PANDAS dr. But I do have more than one Dr that agree with PANDAS. I have a natural MD/DC that I use to help build my ds immune system too. There are some that will help but I don't know if they will be as good as the specialist. I will send you a PM too. Brandy

I am feeling the same way... So so much to learn.. and while reading here alot of stuff I have always just dealt with with my DD who is 8 (and who 3 weeks ago was told she has PANDAS) I'm learning are more then likely the PANDAS.. and now I'm feeling guilty for how I have acted when she was doing alot of this stuff.... I am right there with you and ds will be 8 in less than 2 weeks so I can imagine your life up until now.....- we are about 6 weeks into this and the night wakings, behavior, enuresis, need to have the night light on, his repetitive statements when exacerbated I thought was just being defiant, his reverting to talk like a baby from time to time, his inability to sit still sometimes but perfectly others his real truth that he could not control himself and how I always thought he could...now don't get me wrong my son is still willful when he is not exacerbated and will try and manipulate everyone but you can reason with him- when exacerbated- not a chance......I know that now and I still could not help getting really mad at him today- tomorrow I will do better.

Can someone explain what the Chorea fingers look like- I have noticed the past few days when look at my son it seems that his fingers are bent. He often brings them to his mouth but when he is "relaxed" they are bent not straight.....is this Chorea? Sorry I am asking so many questions-I am just feeling like I don't know anything and am overly paranoid about everything lately. Thanks Brandy

Thanks! Will go to the drug store tomorrow! Why can't this be easier????