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still undecided on PANDAS


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Peglem, Could you tell me how her doctor diagnosed her with PANDAS? Was it titer levels or purely on reaction to antibiotics?

 

Well, she really hasn't been diagnosed, officially. Her doctor wanted to get help from the immunologist and rhuematologist. He clearly admits that this is beyond his expertise (although, I gotta tell you he did the research and knows more about it than either of those specialists- he just assumes they are keeping up, because he does, and can't imagine other docs don't). Botton line, he believes its PANDAS, but with other specialists just saying she's a carrier, its a lonely position to take medically! The rheumatologist did prescribe prophilactic penVK, when I said I didn't particularly care whether it was PANDAS or not, we know for sure that its SOMETHING that responds to antibiotics. Once Allie's pediatrician had his recommendation of prophilactic antibiotics- he took it from there. PenVK didn't work very well. We already knew from the past 2 years that she had the best response to zith- she was on antibiotics nearly all the time anyway- as soon as a course was over the strep came right back. So, we're using zith, and so far-not too bad, as long as we keep the yeasties at bay. So, its really just a matter of we're doing what works, even if we don't have it all figured out with a pretty bow on top.

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bmom,

 

I don't want to mess up your PANDAS thread and go off in a different direction, but I have to ask if you discussed the V Leiden/antiphospholipids connection with the Dr. that you saw?

 

It just really seems to me that that should be explored. Maybe i'm totally wrong here but seeing those things connected with movement disorders just seems too important to be totally overlooked.

 

Last night I thought it was you that had the V leiden and your sister antiphos. Then I realized it was the other way around. Anyway, if you really look into those disorders, you may be able to come up with important info to take to the new Dr.

 

In one article it said that antiphos and V leiden are sometimes found in the same families. One is considered autoimmune and one isn't from my understanding (V Leiden is not) but as usual, it's kind of complicated, so you're in a good position to just take any questions to your Dr. appt.

 

I thought the article that mentioned a possible connection to the MTHFR gene was really interesting!

 

A few of the articles are mentioning these conditions in regards to movement disorders. A couple, I was looking for problems assoc. with illness in regards to these conditions.

 

I don't know if you saw this post on another thread?

 

 

http://www.md-journal.com/pt/re/medicine/a...#33;8091!-1

 

Chorea in the Antiphospholipid Syndrome: Clinical, Radiologic, and Immunologic Characteristics of 50 Patients from Our Clinics and the Recent Literature

 

 

 

 

http://www.annalsnyas.org/cgi/content/abstract/1109/1/473

 

 

 

2-glycoprotein-I (2-GPI, also known as apolipoprotein H) is a major autoantigen in the antiphospholipid syndrome (APS), a disease commonly affecting the central nervous system.
and

 

IgG from most APS patients bound to HRGP, which shares distinct biochemical properties with 2-GPI, is present in the brain and may be an important autoantigen
.

 

 

 

 

 

 

http://books.google.com/books?id=Atuv8-rVX...36PLg&hl=en

 

 

 

http://www.ncbi.nlm.nih.gov/pubmed/10373212?dopt=Abstract

 

and there have been recent reports of positive association with the Leiden variant of factor V and the thermolabile variant of methylenetetrahydrofolate reductase.

 

 

Some of this might be useless, they were just some things that I had copied when trying find any connections.

 

 

http://www.emedicine.com/neuro/topic61.htm

 

Chorea Gravidarum

 

 

http://pediatrics.aappublications.org/cgi/...ract/102/5/1208

 

Varicella Purpura Fulminans Associated With Heterozygosity for Factor V Leiden and Transient Protein S Deficiency

 

and

 

The factor V Leiden mutation confers resistance to protein C activation and the subsequent degradation of factors Va and VIIIa

 

 

Pathophysiology

In the normal person, factor V functions as a cofactor to allow factor X to generate the active form of an enzyme called thrombin. Thrombin in turn cleaves fibrinogen to fibrin, which polymerizes to form the dense meshwork that makes up the majority of a clot. Activated protein C (aPC) is a natural anticoagulant that acts to limit the extent of clotting by cleaving and degrading factor V.

 

http://en.wikipedia.org/wiki/Fibrin

 

Fibrin is a protein involved in the clotting of blood. It is a fibrillar protein that is polymerised to form a "mesh" that forms a hemostatic plug or clot (in conjunction with platelets) over a wound site.

 

Fibrin is made from its zymogen fibrinogen, a soluble plasma glycoprotein that is synthesised by the liver. Processes in the coagulation cascade activate the zymogen prothrombin to the serine protease thrombin, which is responsible for converting fibrinogen into fibrin. Fibrin is then cross linked by factor XIII to form a clot. Recent research has shown that fibrin plays a key role in the inflammatory response and development of rheumatoid arthritis.

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Well, our story has been posted before and I wont go into to its entirety. The problem is that I still am trying to figure out which route to go. We went to Dr. Carol Mathews in Cal. last week. We told her of all of the events of the last year and she said it is not clear cut PANDAS. She wants to keep checking the titer levels. She believes that these should be elevated in order to fall into the category. My son was doing well on the Pen. V until last week and then he has been consistently ticcing while on it. He went to a swimming party last week and the next day the tics started back up full speed. He has not reacted to swimming before so I thought it would be ok. Anyway, I am sorry for the rambling, yet I am fumbling around with which direction to go. Dr. Mathews says she wants titers tested anytime there is an increase. I convinced her to also write in her report to try antibiotic even if the titers were not elevated or negative strep to see a pattern. Do you think this would help? I now have to convince my ped. The thing is, for the first 2 weeks while on Pen, he was virtually tic free. Then swimming party, now a week of non stop ticcing while on Pen. Now I am out of Pen. I am kind of waiting to see if he worsens while off. I have a prescription for azith I could possibly try. I made an app. with Dr. Demio (DAN doc) for Sep. I just feel frustrated, sad, and unknowing which he is falling into. Dr. Mathews said 98% of PANDAS do a finger piano playing thing. He does not although while in episode he always does a fist clench thing. He mainly has tics during an episode, yet I would say the first time he was somewhat different with behavior too. He is not clear cut PANDAS, yet if that is his problem, I dont want to let it go either. Thanks all for weighing in with opinions or info as I am back to my wits end and feeling so sad for him today.
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Well, our story has been posted before and I wont go into to its entirety. The problem is that I still am trying to figure out which route to go. We went to Dr. Carol Mathews in Cal. last week. We told her of all of the events of the last year and she said it is not clear cut PANDAS. She wants to keep checking the titer levels. She believes that these should be elevated in order to fall into the category. My son was doing well on the Pen. V until last week and then he has been consistently ticcing while on it. He went to a swimming party last week and the next day the tics started back up full speed. He has not reacted to swimming before so I thought it would be ok. Anyway, I am sorry for the rambling, yet I am fumbling around with which direction to go. Dr. Mathews says she wants titers tested anytime there is an increase. I convinced her to also write in her report to try antibiotic even if the titers were not elevated or negative strep to see a pattern. Do you think this would help? I now have to convince my ped. The thing is, for the first 2 weeks while on Pen, he was virtually tic free. Then swimming party, now a week of non stop ticcing while on Pen. Now I am out of Pen. I am kind of waiting to see if he worsens while off. I have a prescription for azith I could possibly try. I made an app. with Dr. Demio (DAN doc) for Sep. I just feel frustrated, sad, and unknowing which he is falling into. Dr. Mathews said 98% of PANDAS do a finger piano playing thing. He does not although while in episode he always does a fist clench thing. He mainly has tics during an episode, yet I would say the first time he was somewhat different with behavior too. He is not clear cut PANDAS, yet if that is his problem, I dont want to let it go either. Thanks all for weighing in with opinions or info as I am back to my wits end and feeling so sad for him today.

 

 

 

I have two sons who have been diagnosed with P.A.N.D.A.S.. I can tell you that each one has had different sorts of tics and behavior issues. I have been dealing with this for 5 years. They both started at age 10 with the severe tics. Looking back I believe the problem started earlier, but the severe tics brought everything to light. Neither of my sons have the piano fingering you mentioned. You stated that you son was checked for strep, was this a throat swab or in blood work. I ask because when the tics started in my middle son he had been seen at the doctor because he felt like he had strep, they ran the rapid throat swab test and it was negative. Two weeks later when the tics started, they checked his blood and found evidence of a strep infection. I was told that he probably had a strep throat that went undiagnosed because the rapid test didn't pick it up.

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Thanks all. Zma my heart goes out to you. I have only dealt with this for a year and one son and it sure has put me into a tail spin. Anyway, could you tell me their plans for your sons? Are they on prophylactic antibiotics? Do the antibiotics help them? Kim, I do believe they are somehow related. I just haven't figured out if it would point more to a PANDAS situation or not. I spoke to our doctor about how we seem to have issues on both sides of the family. My husband has minor tics also had many sore throats, but she didn't think that he would be considered PANDAS due to the fact that his tics are daily and don't really vary. My side my grandma had rheumatic fever, and possibly a short bout of tics so maybe this could be PANDAS. She also has arthritus. So, I dont know. On my grandmas side their is one aunt with a sort of Parkinsons type disorder that has recently began. She also has blood clotting issues. So probably related to something. Unfortunately, as I wanted to blame my husband only! :lol:

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Thanks all. Zma my heart goes out to you. I have only dealt with this for a year and one son and it sure has put me into a tail spin. Anyway, could you tell me their plans for your sons? Are they on prophylactic antibiotics? Do the antibiotics help them? Kim, I do believe they are somehow related. I just haven't figured out if it would point more to a PANDAS situation or not. I spoke to our doctor about how we seem to have issues on both sides of the family. My husband has minor tics also had many sore throats, but she didn't think that he would be considered PANDAS due to the fact that his tics are daily and don't really vary. My side my grandma had rheumatic fever, and possibly a short bout of tics so maybe this could be PANDAS. She also has arthritus. So, I dont know. On my grandmas side their is one aunt with a sort of Parkinsons type disorder that has recently began. She also has blood clotting issues. So probably related to something. Unfortunately, as I wanted to blame my husband only! :lol:

 

 

Right now this is no plan for the boys. The youngest one was on amoxicillin for a year and he had is tonsils removed a year ago. These two things did help with the strep. They did this only for the youngest. His titer was extremely high and he continued to get strep. The doctor thought it best to put him on the antibiotics to keep him form possibly getting rhem. fever. He never showed any signs of being sick. No sore throat, no fever, he didn't even feel sick. He just started on morning with tics, I took him to the doctor and thats when he had the high titer. Both boys now get tics when they are sick with anything. They don't need strep for the severe tics to start. I know that they can have different forms of tics at different times. I have to watch for the tics or behaviors to change so I now if the boys are sick. Before the tics started both boys would run extremely high fevers for the slightest reason. They both had strep infections before with fevers. Once the tics started my boys do not run fevers for anything. I just have to watch for problems. Antibiotics do help the tics when they are severe, doctors can't really tell me why they seem to help. The boys tics never competely go away, they can't tell why on this either. Because the boys do not run fevers or get sick with the strep, I asked the doctors if this was caused by a strain of strep, all they could say is research is still being done. I just came across this sight in the last couple of days. Five years ago when this all started they was very little I could find. A doctor in the same ped. practice I take my boys to, told a friend of mine that strep did not do this to children. I wonder in five years if she has changed her mind. My sons have been tested for about everything because I did not believe this could happen from strep. There was very little literature I could find, and nobody had heard of it. On my mothers side of the family, my aunt, grandmother, and great-grandmother had rhem. fever. I have watched family members at any of our family reunions I attend for signs of tics, I have not seen any, no one knows of any either. My question now that can't be answered is will they outgrow it, will it become worse with age.

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bmom,

 

since this is a newer study, you might want to spend a little time looking at this (or copy and take to Dr)

 

http://www.annalsnyas.org/cgi/content/abstract/1109/1/473

 

 

2-glycoprotein-I (2-GPI, also known as apolipoprotein H) is a major autoantigen in the antiphospholipid syndrome (APS), a disease commonly affecting the central nervous system.

 

and

 

IgG from most APS patients bound to HRGP, which shares distinct biochemical properties with 2-GPI, is present in the brain and may be an important autoantigen

 

 

If you can relate any of this to the strep/PANDAS studies, maybe it would provide some clues.

 

I don't know if there is anything helpful here or not? If you stare at these words longs enough they start to make sense, honest :lol:

 

 

http://www.ncbi.nlm.nih.gov/pubmed/18219588?

ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=1

 

Histidine-Rich Glycoprotein Modulation of Immune/Autoimmune, Vascular, and Coagulation Systems

 

 

http://www.nature.com/icb/journal/v83/n2/abs/icb200514a.html

 

immune complex clearance and phagocytosis of apoptotic cells.

 

 

http://www.ihop-net.org/UniPub/iHOP/pm/104...p;pmid=15225155

 

Apolipoprotein H (APOH), also known as beta2-glycoprotein I, is a major autoantigen for the production of antiphospholipid antibodies (APA) in autoimmune diseases. APA is also recognized by a cryptic epitope generated following the interaction of APOH with anionic phospholipids (PL).

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bmom,

 

since this is a newer study, you might want to spend a little time looking at this (or copy and take to Dr)

 

http://www.annalsnyas.org/cgi/content/abstract/1109/1/473

 

 

2-glycoprotein-I (2-GPI, also known as apolipoprotein H) is a major autoantigen in the antiphospholipid syndrome (APS), a disease commonly affecting the central nervous system.

 

and

 

IgG from most APS patients bound to HRGP, which shares distinct biochemical properties with 2-GPI, is present in the brain and may be an important autoantigen

 

 

If you can relate any of this to the strep/PANDAS studies, maybe it would provide some clues.

 

I don't know if there is anything helpful here or not? If you stare at these words longs enough they start to make sense, honest ^

 

 

http://www.ncbi.nlm.nih.gov/pubmed/18219588?

ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=1

 

Histidine-Rich Glycoprotein Modulation of Immune/Autoimmune, Vascular, and Coagulation Systems

 

 

http://www.nature.com/icb/journal/v83/n2/abs/icb200514a.html

 

immune complex clearance and phagocytosis of apoptotic cells.

 

 

http://www.ihop-net.org/UniPub/iHOP/pm/104...p;pmid=15225155

 

Apolipoprotein H (APOH), also known as beta2-glycoprotein I, is a major autoantigen for the production of antiphospholipid antibodies (APA) in autoimmune diseases. APA is also recognized by a cryptic epitope generated following the interaction of APOH with anionic phospholipids (PL).

 

 

Thank You

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  • 4 months later...

Hi Peglem,

 

Our daughter also did not exhibit high titers despite positive cultures (throat and perianal) for strep. We are pretty sure she got the strep infection 2 months earlier when 5 children from her class were out with high fevers and 2 were cultured positive for strep (we learned afterwards). She had an initial fever and sore throat (which we thought was viral). She appeared physically healthy the following week.

 

However, she had a tooth extraction later in the month and bam! she started shouting and having very pronounced defiant behavior and stopped eating breakfast and had signficant irrational separation anxiety. She had another tooth extraction two weeks later and bam! she stopped eating almost all meals. She then exhibited huge OCD issues with ritualistic questions around food, fear of being > 50 lbs, concerns about body image (this is a 7 year old)! Then we noticed a verbal tic and an odd movement disorder -- a strange jerkiness in motion and clumsiness. Her handwritting had deteriorated into a scrawl. From this, she progressed to suicidal statements. It was horrible. She lost 15% of her weight and we were able to get her into the hospital for malnutrition and they took numerous tests and I insisted on a strep culture, ASO, AntiDNAse B, and B-12 depletion (I had read somewhere about B-12 depletion with nitrous oxide) The strep tests came back positive (both throat and perianal) but the ASO was not considered elevated (31) as was the Anti-DNAse B (149).

 

We then had her sister tested and it turned out she was positive for strep. She was asymptomatic, but dx was willing to work on theory of PANDAS and we tried to clear both with Augmentin while also trying on dd refeeding therapy, CBT, and SSRIs. We had some issues getting sibling cleared of strep. At the 3 week culture, sibling came back positive for strep again (dd was on amoxicillan while we were trying to clear sister). Our dd was having all sorts of symptoms and checking with strep experts they indicated that dd could be recolonizing from the sibling even if on anti-biotics. We put sibling on azithromycin and 3 weeks later the strep test came back negative.

 

We took new titers on dd and titers were down even lower ASO (29) and AntiDNAse(<60). We started searching everywhere for whether strep can exist while there is declining titers. There just wasn't any study showing the rate/circumstances of ASO decline. We reached streptococcal experts at WHO and they indicated that there really wasn't any study of titer behavior with long term strep infections. They indicated a recent study by Kurlan where there was a subject with strep for 23 of 25 months who had continuously declining titers. While we were researching this, we switched our dd to azithromycin since her sister's strep was eradicated with azith. We wondered if the strep was intercellular. On the 9th day of azith, we saw dramatic improvement in all symptoms -- and I mean dramatic (she went from not eating to eating, panic to calm, OCD questions to none, ...). I can fill in lots of other detail here, but the short summary is that we think this whole carrier state is less benign that dxs are making it out to be. Perhaps it was this particular strain/emm-type, but bottom line is dd's symptoms (all of them) that we had been fighting for 5 months were noticably down on day 9 and mostly gone by 30 days. Motion disorder was last symptom to disappear (took 40 days).

 

Now there could be all sorts of reasons for what we saw. We had upped her SSRI during this window -- it could have been the SSRI. She was having headaches and we tried Advil during this time -- this seemed to have a positive effect. Lots of things going on, but definitely the strongest temporal correlation was the azithro.

 

I posted a note at top level about what I've learned thus far about titers. It sure would be interesting to find out how many folks seem to be in this low titers state and potentially have had multi-month/year strep infections that haven't been caught (what is usually called carriage -- but maybe it's not so benign).

 

Best regards,

 

Buster

 

 

Carrier means they harbor the bacteria but do not get sick from it. They can infect others. I don't think my daughter is a carrier, though, because 1) She does gets symptoms, they are just atypical, all behavioral, and 2) There have been many negative swabs-which should not happen for a carrier.

 

My daughter's titers vary from extremely below normal range to slightly above normal range. I think this has more to do with a poorly functioning immune system than anything else, since "typical" symptoms are the signs that the immune system is fighting the disease. My daughter NEVER gets a fever. She used to, years ago...but not for a very long time.

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A strep carrier can be contagious. However, they are less contagious than someone who has active symptomatic strep pharyngitis. A strep carrier is more likely to infect someone they spend a lot of time with (a family member or a friend at a sleepover) than someone they spend a shorter amount of time with (a kid in class).

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Eamom- Did you have either of your children's tonsils and adnoids removed? We had my sons (PANDAS) removed. My daughter has been swabbed neg., but upon seeing an ENT, he said her tonsils are large and possibly harboring strep. We are looking at removing hers as well. (She is only 4 so I am debating, but want to be thorough).

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