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brooke

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Posts posted by brooke

  1. My son also has the Chorea but with a PANDAS diagnosis. The important thing is that the treatment is the same. I found it very helpful to go to the website wemove.org and look all of the information on acute rheumatic fever and syndenham's chorea. It is interesting the parallels there are. Rheumatic fever used to be more common. Not sure why it is no longer? It is also interesting that it tends to be covered by insurance and it is listed as an "other health impairment" for purposes of special education. If anyone knows anything about the legislative history of that, I would be grateful.

  2. Thank you all for the great advice! I will work on getting some bloodwork for the humans and talk to our Vet!

    As much as she slobbers on us, and we her, it would not surprise me.

     

    Boy, I had a bad case of impetigo as a young girl. It still have scars. Maybe it still lives in me? I need to talk to my OB because I had strep with different pregnancies, and cannot remember which ones now. Has this ever been looked at??

    Brooke

  3. We have seen our ENT on high dose Augmentin. We are still contemplating a T&A even though they are not "obstructing" his breathing. We also have the swollen glad issue. I am not sure the antibiotics will affect the size. I think you need an ENT that is familiar with PANDAS though.

    If you can hold off, maybe try, but I am not certain it will make a huge difference? I would imagine it would be more telling if there was a positive response to antibiotics?

     

    Hope that helps!

     

    Brooke

  4. I am struggling to figure out how to get the WHOLE family, including the dog, tested for Strep. I know the classic Strep test, but how is it tested in the sinus? The intestines? The ears? To completely eliminate the possibility that one family member is setting off the PANDAS children, does every single angle need to be eliminated? What about the dog? The Vet told me that there is little that can be transmitted from animal to human and the reverse.

    I am getting OCD thinking about this!

     

    Any ideas would be greatly appreciated.

    Brooke

  5. Dear parents,

     

    Below please find a summary of my current thinking on the subject of PANDAS and related illness.

     

    This is an outline of a paper I hope to submit for publication soon which summarizes our understanding at of the dawn of the '10 decade

     

    This is somewhat dense. Any comments appreciated (especially any from Buster!)

     

     

     

     

    Post-infectious Neuropsychopathy of Childhood

     

    Basic problem:

    Selective immunopathy to streptococcus (or less commonly other infectious agents) that incite an dysimmune process leading to a functional catecholaminergic neurotransmitter imbalance in basal ganglia circuits and perhaps other part of the brain, Resulting in some combination tics, OCD and affective symptoms

     

    Classic (Swedo) presentation:

    1. Age 3-11

    2. Acute onset OCD and/or Tics, often remitting/recurring

    3. Temporally associated with infection (if GABHS = PANDAS)

     

     

    Variants (see my Pavone 2006 paper):

    1. < 3yrs old at onset

    2. > 11 yrs old at onset

    3. Subacute or chronic temporal features

    4. Atypical symptoms

    5. Severe symptoms

    a. Exorcist syndrome

    6. PANDAS in children with other conditions

    a. PDD-PANDAS

     

    Immune subgroups:

     

    Type 1 PANDAS – Overactive immune system

    1. Markedly elevated ASLO, Anti-DNAase B and/or streptozyme

    2. Intermittent culture positive for GABHS

    3. (?) Immunocompetent on pneumococcal serotype testing

    4. Anti-CaM2K positive in PANDAS range – possibly higher end

    5. Immunoglobulin levels fall with effective strep treatment (?)

    6. ASLO, Anti-DNAase B and streptozyme fall with effective strep treatment

     

     

    Type 2 PANDAS – Underactive immune system

    1. Non- or minimally elevated ASLO, Anti-DNAase B and/or streptozyme. May show serial changes (though feeble) with streptococcal infection

    2. Can be culture positive for strep, don’t develop expected titer rise afterward

    3. (?) Immunodeficient on pneumococcal serotype testing

    4. Anti-CaM2K positive in PANDAS range – possibly lower end

    5. Immunoglobulin levels don’t change much with effective treatment

    6. ASLO, Anti-DNAase B and streptozyme fall with effective strep treatment

     

     

    Type 1 PANDAS is easier for the medical community to digest since there is evidence of streptococcal infection, similar to Sydenham Chorea, etc.

     

    Type 2 PANDAS is harder for the medical community to understand since there is little evidence of streptococcal infection, similar to Sydenham Chorea, etc.

     

    Non-PANDAS

     

    1. Not GABHS (i.e. non-GABHS PANDAS) GABHS=group A beta-hemolytic streptococcus

    A. Alpha-hemolytic

    B. Non- group A Beta-hemolytic

    C. Gamma-hemolytic

     

    2. Not strep at all (i.e. non-PANDAS PITANDS)

     

    A. Lyme and related illnesses

    1. Borrelia

    2. Babesia

    3. Erlichia

    4. Other tick-bornes

    B. Viruses

    a. EBV

    b. Others

     

    3. Idiopathic antibiotic-responsive neuropsychiatric disorder (no cause identified but amazingly good response to antibiotics)

     

    4. Not infectious at all

    A. Medication-related

    a. Tics with stimulant medication use

    b. Others

    B. Metabolic disease

    a. Wilson’s disease

    b. Others

    C. Other known causes (very rare)

    a. Structural brain lesions

     

    5. Idiopathic

    According to medical thinking circa 1985, this is the ONLY group.

    For PANDAS non-believers, this is STILL the only group

     

     

    INITIAL WORKUP

     

     

    Basic workup in everybody with clinically suggestive picture should be:

     

    Initial screen:

     

    1. ASLO, Anti-DNAase B, streptozyme (GABHS marker enzymes = GABHS-ME)

    2. Lyme titers (especially if from endemic region, suggestive symptoms, others infected)

     

    If GABHS-ME panel positive, then diagnosis of probable Type 1 PANDAS made. This diagnosis is strengthened by longitudinal temporal correlation of clinical symptoms with repeated infection. If 3 or more such episodes (rarely fully documented) – definite Type 1 PANDAS

     

    If GABHS-ME panel negative, then diagnosis is likely Type 2 PANDAS or non-PANDAS

    To further workup in these patients:

    1. Repeat GABHS-ME when convalescent ( to compare acute vs. convalescent titers)

    2. Throat culture – helpful if positive; supports Type 2 PANDAS. Not helpful if negative.

    3. If Prevnar has been received, anti-pneumococcal panel (14 serotypes). If panel abnormal, supports Type 2 PANDAS. Probably not helpful if Prevnar not received. If Prevnar received and normal, probably non-PANDAS.

    4. Further investigation of immune status if anti-Prevnar deficient.

     

    FURTHER PATIENT CLASSIFICATION

     

    At this point, one should be able to classify patient with a working diagnosis:

    A. PANDAS TYPE 1

    B. PANDAS TYPE 2

    C. NON-PANDAS

     

    Treatment of all but most severe Type 1 or all Type 2 PANDAS , ANTIBIOTIC TREATMENT PHASE can begin at this point.

     

    For NON-PANDAS patients, further “trigger search” should be attempted, but not too exhaustively, in most cases.

     

    In SEVERE (i.e. Exorcist-syndrome) Type 1 PANDAS, consider proceeding directly to STRONG IMMUNOSUPPRESSION PROTOCOL. This will almost always be done in the hospital setting.

     

    In Type 2 PANDAS patients, a PANDAS IMMUNOPATHY WORKUP should be done before considering STRONG IMMUNOSUPPRESSION PROTOCOL

     

     

    All NON-PANDAS patients should be further investigated with the NON-PANDAS WORKUP . While this workup is in progress, and if there are no contraindications, treatment with ANTIBIOTIC PHASE should be considered.

     

    If patient initially felt to have NON-PANDAS does in fact respond very well to antibiotics, patient should be labeled IDIOPATHIC ANTIBIOTIC-RESPONSIVE NEUROPSYCHIATRIC DISORDER.

     

     

     

    So we now have 5 categories:

     

    A. PANDAS TYPE 1 (HYPERIMMUNE TYPE)

    B. PANDAS TYPE 2 (IMMUNODEFICIENT TYPE)

    C. NEUROPSYCHIATRIC DISORDER WITH NON-STREPTOCOCCAL TRIGGER

    D. IDIOPATHIC ANTIBIOTIC-RESPONSIVE NEUROPSYCHIATRIC DISORDER

    E. IDIOPATHIC ANTIBIOTIC-RESISTANT NEUROPSYCHIATRIC DISORDER (AKA PLAIN OLD OCD AND/OR TICS)

     

     

     

    BASICS OF TREATMENT - DIFFERENT, DEPENDING ON GROUP

     

    PANDAS TYPE 1 (HYPER-IMMUNE)

     

    Not very severe:

    1. ACUTE ANTIBIOTIC PHASE (consider adjunctive steroids or Advil)

    2. ANTIBIOTIC PROPHYLAXIS

    3. Consider tonsillectomy

    4. Adjunctive psychotherapy ( if indicated)

    5. Consider adjunctive psychotropics

    6. IF NECESSARY, IMMUNOSUPPRESSION

    Steroid burst

    IVIG

    PLASMA EXCHANGE

     

    Severe: 1. Antibiotics and psychotropics can be tried, but are usually ineffective at this stage, so consider proceeding quickly

    A. IV CORTICOSTEROIDS

    B. IVIG

    C. PLASMA EXCHANGE

     

    Strep STILL HAS TO BE AGGRESSSIVELY ELIMINATED once immune cool-down completed

     

    PANDAS TYPE 2 (IMMUNODEFICIENT)

    1. ACUTE ANTIBIOTIC PHASE (consider adjunctive Advil)

    2. ANTIBIOTIC PROPHYLAXIS (with good probiotic regimen)

    3. Consider tonsillectomy

    4. Adjunctive psychotherapy (if indicated)

    5. Consider adjunctive psychotropics

    6. ATTEMPT TO BOOST IMMUNE SYSTEM –

    a. CONSIDER IVIG CAUTIOUSLY.

    b. KEFIR

    c. AVOID CORTICOSTEROIDS, PEX

    d. IF EVER AVAILABLE, STREP HYPER-IMMUNE GLOBULIN ideal here – A GOOD SOURCE WOULD BE PANDAS TYPE 1 KIDS!

     

     

     

     

     

     

    IDIOPATHIC ANTIBIOTIC-RESPONSIVE NEUROPSYCHIATRIC SYNDROME

    1. ACUTE ANTIBIOTIC PHASE (consider adjunctive Advil)

    2. ANTIBIOTIC PROPHYLAXIS (with good probiotic regimen)

    3. Consider tonsillectomy

    4. Adjunctive psychotherapy (if indicated)

    5. Consider adjunctive psychotropics

     

    NON-PANDAS

    1. WAIT AND WATCH – RE-EVAL IN 6-12 MOS

    2. Adjunctive psychotherapy (if indicated)

    3. Consider adjunctive psychotropics

     

    SPECIAL SITUATIONS

    1. SYDENHAM CHOREA CONCERNS

    a. CaM2 kinase essential (needed to distinguish SC vs. PANDAS groups)

    b. PEDIATRIC CARDIOLOGY EVALUATION

     

    2. UNUSUALLY STRONG FAMILY HISTORY

    a. CONSIDER CGH MICROARRAY

     

    Hopefully this framework can guide workup and treatment protocols. I think the Cunningham and ant-pneumococcal tests may be the most specific we have, and the most helpful. Obviously, there is a lot to verify here.

     

    Happy new year to all with a wish of hope and recovery in 2010,

     

    Dr. Rosario Trifiletti ( Dr. T)

    Confused.

    I think we are PANDAS 2 -- Low titers, possible Mycoplasma Pneumoniae -- but responded favorably to IVIG ,antibiotics and PEX, in that order. Dramatic improvements for three weeks post PEX, and then positive strep test. One week of regression, and now on and off. Still have Chorea and anxiety/OCD symptoms. No longer "Exorcist" symptoms, thank the Lord! Will pursue tonsilectomy, but continue to have concerns about the strep source being in the gut?

    Thank you for the further clarification!

  6. I am feeling so scared and overwhelmed right now. I've been fighting so hard to get my son back on Omnicef and he's finally on it and it doesn't seem to be helping! He's on day 6 of it. The last few times he went on it we'd seen so much improvement by now. We had 2 days with no meltdowns (Sunday and Monday) and I was hopeful. But the last 3 nights have been back to square zero. He's exhausted. His obsessions are worse. He needs to know what's happening, he needs to do something. Today after school he said his head hurt and he was tired. I gave him him antibiotic and Advil..hoping. He got agitated about wanting to buy some expensive thing off EBay. I left to pickup my younger son from school. When I got back he was sleeping. I woke him at 5:30 to eat and he immediately started melting down about not getting to do anything tonight. I can't talk to him at all when he is like this. He just groans and screams the same thing over and over. It goes on for hours. His dad was home tonight and thank god he was in a better space emotionally than me and dealt with it. Finally got him to take some more Risperdal (our rescue remedy right now) and calmed him down enough to get him out of the house. I swore I wasn't going to change his psych meds before we see Dr. L in Feb., but I can't keep just watching this every day. This has happened 10 out of the last 13 days - some times more than once a day. After spending 40 minutes last week convincing our psychiatrist to try antibiotics and not Depakote, I feel like I can't call him again to ask advice! He is so depressed and just wants to die. He can't even get to his beloved hockey practice, and tonight just threw up his hands and said "I quit". We weaned him off of Celexa in Dec., after phone consult with Dr N, who thought it may be activating him, and it seems like with the last 10 mg this all started. But it corresponded with going off the antibiotics too so I attributed it to that. Now I'm not so sure. I really wanted to wait this out until we saw Dr. L, but I feel like I'm torturing him and I'm so burnt out I'm ready to take him to the hospital. He is terrified of the place and won't go willingly, and it's an hour away. We'd have to involve the police or something to get him there and I don't even know if they'd admit him because he hasn't tried to hurt himself. I horribly almost wish he would so I could just make the call and know I'd done the right thing. Cause right now I feel like nothing I am doing is the right thing...

    Dear Wornoutmom,

    I know where you are! I was there too with very similar issues. I do not know where you are geographically, but I wish I could take your son to try to give you a break!

    We did not try any of the psych meds, except the SSRIs which were disasterous. Only thing that helped us was Clonodine which you can get in patch form. I think the psychiatrist would be willing to give you that and I do not think it would be something that Dr. L would object to. I too have not heard Omnicef as an antibiotic of choice.

    If you can hold out on the Hospital, I would. Been there and done that. The only benefit was that it said to our son, you cannot do this! But the effects did not last long and all they did was put him on Celexa and Clononine , the former made him worse! We also had no idea at that time that he had PANDAS so you are in a better position armed with that knowledge!

    Hang in there! If you want to talk, PM me!

    Best,

    Brooke

  7. My son had pneumonia and sudden onset of PANDAS. We did not have a blood test as the diagnosis was via X-Ray. My brother was exposed to my son with pneumonia (prior to diagnosis), and came down with a horrible case of pneumonia thereafter. He was sick for a long time. I also think that my son has co-infection with strep, whose source still baffles me? My thinking is that it could have started in the throat and migrated to the gut.

     

    IVIG, PEX, and antibiotics have helped a great deal, but we are still not out of the woods! Quite frustrating! Could it be that this combination of sources requires a different protocol than the "traditional" strep only source?

     

    We are planning to switch from Augmentin to Zithromax.

    Brooke

  8. I always get perspective on this forum!

     

    I guess I have a big battle, hesitate to say "won" for fear of jinxing myself and others! ?

     

    A little over a year ago, my son was wielding metal candlesticks at me in a rage tantrum. Post IVIG, PEX, and antibiotiocs, he will now carefully help me light the candle in that same candlestick.

     

    While we still have our issues, and I am with him 24/7, it takes a reminder like this one to make me realize how far he has come.

     

    I do try to let him know that almost every day, but maybe it is me that needs that reminder?

  9. Strange that so many of us have issues with stomach pain and reflux. I still wonder if there is something going on in their intestines that we cannot see! My son had some stomach pain recently when he switched from Augmentin 875 to Augmentin XR, so much so that he could not tolerate going to School. He had one dose of the XR though? And the pain lasted for almost 4 days? But since his stomach ache disappeared, he has been more tolerable at home, despite the stress of finding a school for him.

     

    I still have not found a solution!

     

    If I do, I will post!

     

    Just feel that there is a pattern here to document!

  10. I took my non-PANDAS son to a rheumatologist this morning because he has had ongoing stomach aches since a strep infection in the fall of 2008 and started complaining of joint pain over one month ago (he also has high strep titers).

     

    I called the office in advance to find out whether they are familiar with PANDAS, since it is a big part of our family history and I need someone who can understand the big picture. The nurse assured me that they have PANDAS patients.

     

    Well once we were there, the doctor told me she only had two PANDAS patients ever and that once they got rid of the strep and put them on Zoloft, the kids got better and it was not a chronic problem (side note - one of my PANDAS kids was on Zoloft and it was a disaster like so many others here). She told me she believes in PANDAS but she believes it is very rare and is terribly over diagnosed (I don't think anyone here has had an easy time getting diagnosed!) She also told me it is so rare that there is no way we could have two children in the family with it. I would have said thank you and walked out at this point if not for the fact that I needed to get to the bottom of the stomach aches and joint pain.

     

    She examined him and found no evidence of any rheumatalogical disease. That was a relief, but then she told me that she has no idea why my son is having joint pain and cannot help us. Not - let's look into this further to find out why your son is having joint pain for several minutes at a time, up to twice a day. She said she has no idea and is sending us back to the GI because of the stomach pain. Seriously...I could call myself a doctor if all it took was "I have no idea why you are having pain"...

     

    very frustrating!!!!

    I am sooo sorry abot your frustration, and COMPLETELY understand how you feel vis a vis Drs who just do not know about this. SSRI trials for these kids is almost diagnostic. While people with bipolar disorder can also be activated on SSRIs, there seems to be a difference. OUr kids can take almost no medications.

    Thoughts are with you!

  11. I can't believe it is finally here. We are taking our son to Colorado tomorrow for IVIG at The Children's Hospital in Littleton, CO with Dr. Smith (Thank you Elizabeth!!!).

     

    We told our DS yesterday and it was really rough. He is afraid to fly, but we are having success with calming him with Advil PM, I tried it last night and tonight to see how he would react first.

     

    I have to say it is the only thing that has helped calm him, since I can remember. I did not realize, until the nurse at Dr. Smith's office told me today that advil pm is just ibuprofen with Benadryl. I double checked the active ingredients and was that a suprise. I thought my son could not handle Benadryl, but he can. Also, it has been a long time since we tried it with him.

     

    He was moving around upstairs for hours last night, jumping off furnitre, hiding in between his mattresses, crying out and just all around inconsolable with so much worry. I gave him the two 200 mg. tabs (safe dosage per label) and within 30 minutes he was completely calm. Just laying on the bed, using his laptop. He said "Mom, I'm ready to go to sleep now". I was practically jumping up and down with glee (In my head of course).

     

    It did not actually make him sleep right away, but he went to sleep a couple of hours earlier than he has in the past couple of weeks.

     

    Wish us luck...

     

    I cannot wait to get this part of the journey over!

     

    I'll keep you all "posted", literally!

     

    Thanks for all the support leading up to this, We would not be where we are today without this amazing Forum.!

     

    So glad for you! Prayers your way.

    This is an easy procedure compared to what you are going through! Probably flying would have been worse for us than IVIG.

    Know that it may be a little bit of an electrocardiogram post IVIG. Great days, ok ones, and some bad too. Keep up your faith and patience as hard as it may be. We are all out there for you too.

    PM me if I can be of any help! We did IVIG in July.

    Best to you and your boy!

    Brooke

  12. We are almost two weeks post PEX, and just diagnosed with Strep. We had AMAZING results for that period. So far a bit of an exacerbation, and not too fun. We will switch antibiotics to treat the strep. Any input from others would be welcome.

    Just as we were thinking we could do a normal academic environment!

    Thanks, as always, for your support!

  13. Ok so today was a great day He recieved an letter from the mayor who read his paper on WW11 at acouncil meeting came home and started his hw and wrote 2 papers on sponge bob(oh well Ill take it) Ill never get this stuff.Still waiting for the insurace company to approve the IV Please dr T call them!!

     

    Melanie

     

     

    So glad for you and him! Must have made him feel a mile high! I will pray that he has the IVIG. It really works!!

    Take care of you and him!

    Brooke

  14. Hi.

    I know what you are going through!

    Stay away from SSRIs as you know what the results are.

    The ONLY medication that helped somewhat was Clonodine. It is a hypertension medication that made my son very sleepy, so I gave it to him at night. Then Dr. Latimer put him on the Clonodine patch, and it helped until we got antibiotics, did IVIG and PEX.

    Hang in there and keep fighting!

    There if you need anything!

    Brooke

  15. Blue Cross Blue Shield for another IVIG? Did you appeal it on your own or with a lawyer?

     

    We appealed it with some help from my union it doesnt matter its just not going to work.My whole family are lawyers they all would help the insurance clearly says not covered for pandas .Even though they did pay for the 1st iv.

    Melanie

    We have the same insurance. We did IVIG in July, and now they are saying that they will not cover! I wish I knew what to say. Is it outpatient or Inpatient?

    I am so sorry. I too have read their website.

    Thinking of you!

  16. My son also had a horrible reaction to SSRIs. Prozac set him into a week long rage that stopped when we stopped the medication. (Note Prozac has a long half-life so if you stop it, it will take time to be eliminated from the body) We did not try Seroquel even though it had been recommended. (along with a list of others that scared me) My son actually has paradoxical reactions to most medications. The only thing that helped him was Clonodine, mostly to sleep when he had a rage at night. He is now on nothing but Augmentin.

     

    My advice is to go very cautious on medications. I have not heard of Namenda, but if it is new, I would be dubious. I would try Clonodine. Dr. Latimer prescribed it for us. It comes in a patch and a pill. The patch helped througout the day. The pill worked almost as a sedative.

    Hope this helps@

  17. To all Fellow Sufferers!

     

    My son just returned home from Plasma Exchange at Georgetown. We had few glitches with our three rounds of treatment. (He had done IVIG in July with dramatically improved symptoms about six weeks post IVIG. Then placed on Augmentin 875 twice a day.)

     

    My little boy is Happy (Capital H!!!) , he has said on multiple occasions since his treatment. We have had no incidents of OCD/Anxiety, emotional lability, sensory defensiveness, or rages. (much of this had improved post IVIG but we had many breakthroughs and his Chorea was still prominent) Fine motor is still off, but we will watch closely over the course of time. He is a little restless, but is now out playing in the snow, and had no issues with putting all of the snow gear on! :lol:

     

    I will keep you all posted as the days progress with more challenges still in store I am sure. My 17-year-old (also diagnosed with PANDAS) is on prophylactic Azithromycin.

     

    I am also compiling a booklet with pictures of his experience with PEX if any of you out there is planning this procedure.

     

    After this almost two year nightmare, I may actually have time to just breathe, and just maybe I can catch a glimpse of life as it could be!

     

    PS one day I will recount our story. It is a painful one, and has changed my little boys life forever. But now I will focus on the positive that has been the gift I have received!

     

    Thoughts and prayers go out to all of you! I hope that I can use the little strength I have now to give whoever needs it a boost as many of you have done for me!

     

    All of my Best,

     

    Brooke

  18. I, too cannot remember if I already replied.

    I am usually a big believer in alternative medicine. However, in this case, it does not seem the alternative doctor has a lot of experience with PANDAS.

    I would definately advocate for the steroids as a trial. That is what we did and for Dr. Latimer, it was diagnostic that our son responded so well to prednisone. We could not stay on it because it made his heart race, but it lead us to decide that we needed to be more aggressive treating our son with PEX or IVIG.

     

    Don't be afraid! I was there too and probably filled the rx and let it sit for weeks. Trust Dr. Latimer and talk to her about your fears. But I would not waste another day before trying prednisone. Do one at a time though.

    Good luck!

    Hope this helps!

  19. While we have only done IVIG once (without antibiotics), it was definately an up and down journey for a good few weeks. My other children were so disappointed because they had thought it would make their brother better immediately. I so know how it feels to wait for the day to end. Hang in There!! Maybe this will be the time where it will not work instantly, but will work completely for the long term!

     

    Take care!

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