Iowamom

We are convinced that at about this age something happened with our now 10 yo son. The behavior stuff sounds SO familiar. This just wasn't your normal 2 yo stuff. "But you know, every kid is different--strong-willed...blah-de-blah....." NOT! Run, don't walk get the throat swabbed. Best Wishes! Dawn

Hello! This may be a no-brainer, but thought I would toss this out anyway since there has been some discussion on various symptoms that may or may not be related to having PANDAS. If you sent or have sent serum in to be analyzed by Dr. Cunningham's lab make sure to include these observations/symptoms with the history you send in. It is these odd/unusual presentations that may help solve this puzzle. You never know. My boy had binocular vision problems that interfered with his ability to coordinate eye movements (12 tiny muscles), affecting his reading and also causing him to suppress vision in one eye. Can't get any more fine motor control than that. From what I can figure out, the oculomotor circuit runs through the BG. Hmmm. I say now. He responded to vision therapy, but I have noticed MUCH smoother, less hopping & missing words, reading since being on high dose abx & IVIG. The point is to not overlook anything. They will sort it out in the lab. Kathy said they are using the lab down-time to catch up on data entry, symptom correlation, hx's--etc. I am sure they would be happy to receive any histories or additional info you neglected to initially send. She said they have barely been able to keep up with the testing. They have been receiving (Diana P. about fell off her chair when I told her this) up to 14 samples A DAY!! Swedo said in one of her presentations that it was the thorough histories that helped them to initially connect the dots with PANDAS. Just wanted to pass this along. Dawn

At sometime, I will ask Dr. K why we just don't pull out the IV abx. Maybe in the future that will be what is done. I know this whole trx protocol is a work in progress. It is just so needlessly devastating for the kids and families. I am thankful he agreed to high dose Augmentin post IVIG. We have a script for at least three months. I am happy to report that we are making good progress 5 weeks out. It's been bumpy, but the overall trend is positive--after many years of not knowing the problem. We are cautiously optimistic.

Keep giving a "hearty" probiotic. Also, sacharrimeyes (sp) boulardii. Florastor is a brand. Other versions are cheaper. It works on the gut flora in a different way. Was highly recommended. Google and you'll understand. Our son hasn't had so much as goopy poop. I hope you get the help & relief your dd needs. Best wishes.

Kathy Alvarez has been super. Don't hesitate to ask questions. Dr. C & Kathy have always returned explanations to my questions. Best wishes. Get this sample in lickety-split. They are using the two months to catch up. Kathy says they have been receiving up to 14 blood kits A DAY!! Because of the length of time it takes to run the assays they are barely keeping up. They will be charting data, recording hx's, and correlating symptoms with test results--stuff they haven't had time to do yet. I don't think this is so rare.

Regarding high dose abx & Dr. K: We had IVIG with him one month ago. After about a week post IVIG I asked him if he felt we could finally whip the strep and strengthen the immune system on IVIG alone and pabx. Our son's case has quite the hx and we hadn't gotten a handle on the strep prior to the IVIG. He agreed. 875/2x day (Augmentin. 105 lbs.) He gave us 2 weeks and then then I had the month of pabx that got me some more time at that dose. I just got a reply from him today saying we can continue on this dose until at least he smooths out. I was very pleased. I think his protocol is evolving. I'm so glad I asked about the increased dose. Dawn

We are post IVIG 4 weeks. The first three weeks were ROUGH. We have a 100 lb son that rages, among other things. This week has felt like a 2 steps forward stage. Some really pleasant days. It was one step back for about 24 hours, but I think we are on a fairly even keel right again. I just want to encourage you. Dawn

Betty4- Our son's CaM was 184% and the other tests were negative. I was confused and email Kathy and Dr. C. First, and foremost we were assured that our son has PANDAS. They don't necessarily "expect" the other ones to be elevated in PANDAS. They would expect them to be elevated in Sydemham's Chorea. The CaM activation is the "kicker" with PANDAS. She will give you a very good reply if you email her. Hope this helps. Dawn

IMHO, the foundation is steered and fixed on Mass General and the beliefs of Dr. Geller, an endorser of her book (front jacket). Is there a drug company that makes Augmentin involved?(not just using a generic). I am also concerned about her emphasis on only OCD. Her son's experience isn't the only way PANDAS presents. Don't we all know this. I may be a little harsh in saying, follow the money. Oh, I think we would be welcome at the table, but as far as getting her steered in a more accurate direction--I doubt it. I would have thought if she was propagating misinformation (e.g., low titers) Dr. Geller or some other doc she dealt with would have corrected her --if they believed it to not be accurate.. If "we" were to want to help Cunningham or others Ithink we would be better to start our own--for research from a different angle. Again, just MHO.

Ditto to Peglem's response. We now believe our issues started before the age of 2. Nobody knew much better 9 years ago. We always said that something was "different" but no one could put a finger on it. "More consistent parenting" was the initial bunny trail we went down. My favorite line from a nursery rhyme that has been my son. and sounds like your son: "And when he was good he was very, very good. And when he was bad he was horrid!!" I'm with Peglem. I think the benefit outweighs the risk. I also remember saying: "Terrible two's??!! Ha, the four's were 2x2!!" Did Dr. C make any comment about the relationship of age and CaM results-- if there is any. Best Wishes and prayers. Dawn

Hi all! I have never started a new topic, but here goes. There was some chatter on the Saving Sammy/foundation topic regarding the type of PANDAS onset. Perhaps when Dr. K and the other docs meet in January the notion that PANDAS can only be rapid onset can be laid to rest and a more refined diagnostic criteria can begin to be brought forward. It was 9 years of alphabet diagnoses and dancing around the real problem before our 10 1/2 yo. Dr. K says there is a subset of PANDAS kids get this very early on and it is missed because the symptoms are mistaken for something else. Curious...does the PANDAsnetwork recognize that it isn't just rapid onset? It should if it doesn't. I know there are many kids that didn't have rapid onsets. Dawn

My girls did not have rapid onset until they got vag. strep at the beginning of this year. Otherwise, they have waxed and waned their whole lives with strange behavior but since it started so young, you could not tell that it was sudden since they were changing so quickly with early development. It will be interesting to see how the doctors who have been dealing with this for years and have learned so much, who we all are now learning from become involved. Hopefully the new media coverage will just bring it all into the forefront and help us all. Fingers crossed, fingers crossed.... s Maybe after Dr. K and the other docs meet this January the notion that PANDAS is only rapid onset can start to be laid to rest. No rapid onset here. Nine years of waxing and waning and alphabet dxes and . Dr. K believes there are a subset of PANDAS kids that get it very early and the symptoms are not easily unrecognized and then mistaken for something else. I believe the actual diagnostic criteria from the manual says "rapid onset or waxing and waning of symptoms"--something like that. PANDAS is not just rapid onset.

DeAnn- Hello! Your boy's response is very encouraging!! Our boy crashed after the steroid. Doc said it was too abrupt. Do you have a date for IVIG? Did you get a response from Dr. K? We are headed into our 4th week Post IVIG. We are seeing some encouraging signs. His day was awesome. Seemed so much like a 10 yo. We are seeing this more. More flexibilty, less stuck thinking. That was until he had a meltdown close to be bedtime. His meltdowns don't seem as intense, or go on as long. Dawn

Seroquel XR was a flop for us, as was Abilify. Lexapro (SSRI) made him disinhibited--Weeeee. That was fun--Not! If there is one drug that I would give the biggest thumbs up for him, that would be Namenda. A glutamate receptor antagonist. Glutamate is a neurotransmitter. Dawn

Our 10 yo son is on Risperdal 3mg/day, split as 1mg a.m and 2mg p.m. for rages and the like. It and Namenda (probably more so) have helped some. I repeat, some. Nothing else has. I gather, it needs to be 2x a day. Are you just taking it one time a day? When were were on 1mg, or 2mg it was always split a.m./p.m. Our psych cautioned us about the possibility of akathisia--the an inner feeling of needing to move. I am certain we are seeing that based on what I like to call "the wedgie wiggles"! They have given him a tiny dose of a drug to call that down. I hate it, but we are only out 3 weeks on IVIG. We can't be titrating yet, but that is Dr. K's plan once we get a good stretch of holding improvement. Our experience. Dawn Bubbasmom- I hope this ends up in the correct place in the thread! The very same reasons we are on it. Our goal is to get him off in time. IVIG with whom?? Dr. K said the older kids tend to have a bumpy road to recovering. He said younger kids tend to improve and just take off. I gather from several of the parents with older IVIG kids experience some pretty bumpy times in the initial weeks post IVIG. We have not had anything as bad as what we have had. I would say it is different. The flipping out times aren't as intense and don't last as long. Is your boy still pre-puberty? Dr. K is very optimistic even though Evan has had this a long time. Best wishes tomorrow!! smile.gif Dawn

Our 10 yo son is on Risperdal 3mg/day, split as 1mg a.m and 2mg p.m. for rages and the like. It and Namenda (probably more so) have helped some. I repeat, some. Nothing else has. I gather, it needs to be 2x a day. Are you just taking it one time a day? When were were on 1mg, or 2mg it was always split a.m./p.m. Our psych cautioned us about the possibility of akathisia--the an inner feeling of needing to move. I am certain we are seeing that based on what I like to call "the wedgie wiggles"! They have given him a tiny dose of a drug to call that down. I hate it, but we are only out 3 weeks on IVIG. We can't be titrating yet, but that is Dr. K's plan once we get a good stretch of holding improvement. Our experience. Dawn

I'll share the LITTLE I know about the BBB. Your head/brain is filled with a mesh of capillaries. Take the 'brain' away and you would see this brain-shaped mesh of blood vessels. The inside of these capillaries is lined with special epithelial cells. (The outside of the vessels have astrocytes connected to it which (I believe) receives/relays back that which passes back & forth through the BBB ). There are epithelial cells elsewhere in the body's vessels, but these are unique to the blood vessels of the brain. Very simple in explanation, the cells form a very tight bond. There are certain "stuff" that is suppose to go in and out of the blood, to the brain, through these cells that line the vessels, e.g. water, medicines, good nutrients. It is designed to keep the wrong stuff out. It is designed so intricately that substances (obviously, at the molecular level) "know" exactly where to get through e.g., through the tight junctures or through the cell membrane, or by hitching a ride on another substance. Check out an image by googling. It is very fascinating. Not to open a can of worms or an argument---has it even been proven that the autoantibodies breach the BBB because of there being damaged in some way. I have read (somewhere) that there are a few (maybe 3, I'm think I remember) modes of breaching the BBB. Another way is by piggybacking. The wrong stuff hitches a ride on a substance that can get through. Some drugs have to get to the brain that way. I am thinking that "breach" does not need to mean like a break in the levy. Undercover is a possibility, too. Figure out the BBB issue and many different brain diseases could be conquered. Maybe someone else can shed additional light and also correct any erroneous parts of BBB explanation. Dawn

Our 10 yo son is on Risperdal 3mg/day, split as 1mg a.m and 2mg p.m. for rages and the like. It and Namenda (probably more so) have helped some. I repeat, some. Nothing else has. I gather, it needs to be 2x a day. Are you just taking it one time a day? When were were on 1mg, or 2mg it was always split a.m./p.m. Our psych cautioned us about the possibility of akathisia--the an inner feeling of needing to move. I am certain we are seeing that based on what I like to call "the wedgie wiggles"! They have given him a tiny dose of a drug to call that down. I hate it, but we are only out 3 weeks on IVIG. We can't be titrating yet, but that is Dr. K's plan once we get a good stretch of holding improvement. Our experience. Dawn

Our 10 1/2 yo son started having migraines at 3 1/2. These continued for several years. He is of a subset of PANDAS kids that Dr. K believes gets it very young and it's missed. In hindsight, and with med records going back to his birth, we truly believe something happened around 15-18mo. Because of all the tummy issues he had, I am inclined to believe these migraines were strep related. Dawn

Faith, My son was just diagnosed last week. We went to see Dr.K in Chicago. My son has had this for a long time. He is twelve years old and crashed at 5 but doctors kept missing it. I believe he has had this condition since he was 2. He does not have TICS but has the OCD. When he was 5 he became like a rabid animal virtually overnight after a rectal strep infection and 5 year vaccinations. He has been inpatient twice. Once at 8 for being suicidal and once at 11 for being homicidal. When he was in a year ago they missed this. The doctor had never seen a child like mine before and the psychologist suggested it minght be PANDAS. They checked his ASO and it was 400. The doc thought it was elevated but not extreme so it warranted checking again if we ran in to another problem. He was medically excused for the entire school year last year and is still recovering from this bout. He made some homicidal comments again and I thought what the heck I'll have the strep levels checked. His ASO is 400 and his Dnase B is 1590. This prompted me to take him to Dr.K. Dr.K feels we are up against the clock because of my sons age, the fact that he has had this so long without treatment, and that he hit puberty a couple of years ago. The doc doesn't want to spend the time trying long term antibiotics as he feels it won't work and wants to head straight to IVIG. I feel bad because I kind of looked into PANDAS last year and dropped the ball. I didn't fully understand what OCD was - I thought it was people who wash their hands 100 times a day etc. which is not the case with my child. He has the intrusive thoughts etc. There have been times that things have been relatively normal around here and we have thought that we had it licked and then BAM it's back! Now I understand why. I'm really concerned that he is too old but I'm praying for the best. DeAnn DeAnn- Dawn here. There shouldn't be any reason you can't get going on abx and move fwd with IVIG. Dr. K bumped Evan's abx to 875mg 2x/day.(Augmentin) post IVIG after I inquired. I'd email him and ask if you could just pull out all the stops: high dose abx and get scheduled for IVIG. Or is Dr. K the one suggesting the steroid burst? I'd try to get abx while you're trying to get everything in place. He is good about emailing back. Give me a call tonight if you want. This is all frustrating--I know! There have been other older kids helped with the abx. Dr. K has just started to get a bit more comfortable prescribing high dose abx. Give him a try. Dawn

Pixiesdaddy- Every child and school district is so different. I just throw this out because it has worked in our similar situation with our 10 yo son. Transitions after being away from school. Long weekends, holidays, out sick, breaks have been tough. It was our wonderful principal who said he would come and pick up our son if he was late to the bus because of his behavior, so he wouldn't get use to mom bringing him. He has done it three times (even chased him across the yard when he bolted). (There have been a couple times we have had to take him). The principal lets him chill in his office, lays out consequences (make up time at recess) if he isn't calmed & in class by x time. He has lost recess a time or two, but has always gotten to class and settled in nicely. We have been blessed with a very understanding principal and male guidance counselor at his school. This is what has saved us this year. We are two weeks post IVIG. Today was a "one step backwards" day. He said his brain felt weird, like it was on a rollercoaster. Weeee....he acted like he was on a wild rollercoaster all day! Hoping the best for you and your girl. Dawn

Shelly, Hello. I am pretty certain you are the ones across the hall from us when we had our son out in Chicago. I am glad you got a different abx and it's working w/o the tummy troubles and things are improving for your girl. Our first two weeks have been up and down. The first week was pretty rocky; the second week more like waves. The symptoms have waxed & waned, not nearly as intense or as long lived. This morning was pretty rough, but he is doing better. Felt like a one step back day. We emailed Dr. K a couple days ago with our concern that boosting the immune system with IVIG and fighting an resistant strep infection on only 500 mg Augmentin a day at the same time may prove difficult post IVIG. (His titers have been very high & higher He replied immediately and increased the Augmentin to 875mg/2x day for 14 days. Now we're pushing the probiotic a bit harder. Evan has complained of some stomach issues, but I think we're doing better. I know Augmentin can be a tough one for some. I'm anxious to see what this next week brings. Thanks again for treating us to Starbucks! It was great to meet you folks. Dawn

However, IMO things can start to get murky when PANDAS has gone on long enough. It not longer takes a strep infection to trigger an exacerbation, but any illness or stress (or colonization). Our dd's PANDAS got to the point were she had chronically elevated auto-antibodies (her CAM kinase was in the high PANDAS range when she wasn't in an exacerbation, after 1 year of antibiotics, positive for anti-neural antibodies) and got worse when she was in an exacerbation (after the flu, CAM kinase ll high SC range, still on treatment strength azith). So, it is my belief that if this illness goes on long enough, you might not have really obvious exacerbations and periods of quiescence ("episodic" like Swedo talks about.). You get a baseline change where the child never gets back to "normal" (without PEX or IVIG at least) b/c the anti-neural antibodies are always there....they become chronically ticky (or have other chronic mood/adhd/ocd issues). A very big "Amen" to your opinion! Like our son, so many of these kids get alphabet diagnoses until (if fortunate) an on the ball doc (in our case, a child psychiatrist) starts connecting the dots. We've had over 8 years of this (7, before being dx'd a year ago). We always said that we were missing a puzzle piece--we think we've found it. Very well put, EAmom! Six days post-IVIG, Dawn

Michele- Your story sounds so much like ours. Our 10 yo son just had IVIG with Dr. K on F/S. We & Dr. K believe he is an early onset PANDAS that has been mis-dx'd for years. He's an Alphabet kid. If you are seeing a new Psychiatrist you might inquire about the use of Namenda. They are using it for PDD traits, and are having very encouraging results. We just added it to the Risperdal 3 weeks ago. We were seeing good results--finally a drug combo that has worked a bit. Dr. K is inclined to think that is less about the medicine and more about a waning period. There are psychs here in the central IA area having very good results. Yes, it is an Alzheimers drug. It happens to be an antagonist to glutamate receptors. Glutamate is an abundant neurotransmitter in the brain. No, I don't want my boy on these drugs any longer than necessary--the alternative we were getting to is him not being able to live here. That bad. He is such a sweet, considerate, fun creative kid--when he is operating on all cylinders. Just wanted to pass this med info along, since these two drugs have helped all 5 of us live under the same roof, in relative harmony. These docs here have been using it for about 5 years. Any good psych should be aware of it. SSRI's bombed. Abilify & Seroquel were worthless. Praying you and others get relief. We are very bumpy post IVIG right now. Dawn