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Everything posted by P_Mom

  1. Ok....I may have a totally different view on this and many may not agree but here goes..... I HIGHLY recommend reading "Wild at Heart" by John Elderidge. My husband and I read it and it really opened my eyes to the heart and soul of men/boys....which is a good thing. My husband learned so much about himself....he thanked me for making him read the book....and he hates to read. I too learned a great deal and feel it will be very instrumental in raising my boys successfully and helping them to feel like they have what it takes....that they are strong men. Anyway...it addresses bullying. The authors son came home one day from school sad and depressed because a kid was picking on him. He wouldn't speak much about it and the author provoked him until he did. When the author, the boys dad, responded to the boys plight by saying...."next time he does that.....I want you to sock him as hard as you can." The boy's face lit up....he was delighted immensly by this. He previously felt he had to live with it....or ignore it...or have his parents fight his battles....all which take away his dignity. If he could take care of it himself...he would gain the respect of other boys and gain self confidence.....the boys would know to leave him alone...that this kid is no "sissy." It works. My husband went through the very same thing as a kid. He was constantly picked on by one particular boy and one day he just hauled off and gave it to him. The bullying stopped. Now, I know there can be alot of implications to this. Since your boy is big ...maybe just a firm shouting...getting in the bully's face.....standing up strongly for himself would be enough. My boys know that they are permitted and encouraged to stand up for themselves and others. And yes...they are permitted to use physical force if absolutely necessary. This may sound crazy to some...but, read the book......it does a much better job at explaining this than I do. A must read! Just fyi...my boys are not violent kids and they would not take it to the extreme...just do what is necessary. My one son is 12 and the other 9....they are big boys, too....they have never had to resort to anything physical....even though they know they can. They both did, once each when they were a bit younger and with our encouragement, need to stand up for themselves and get in the face of a bully. It stopped immediately and they have not been bothered since...their self confidence soared as well. My younger now stands up for others. For instance, the other day a boy was throwing a toy truck around the bus. A big toy truck. The bus driver is so passive, he never says a thing. When the truck came within inches of hitting a child in the head....my son grabbed the truck and stood up to the kid saying he needs to stop.....now. The boy did stop. When discussing it at dinner...we were pleased with his reaction and told him he did the right thing. My older son is slower to respond....more laid back...but were are constantly encouraging him to speak up and stand up. I don't want either of my boys to be the one who saw and walked away...or the one who saw, walked away and ran to tell Daddy. (referring to the Penn State scandal) Another thing.....if it ever came down to it and my boys had to get physical....we are aware, as they are, that they may get in trouble with the school if it happened on school grounds or with the parents of the bully. They know, that if they were standing up for what is right and defending themselves or others, even though they may get in trouble elsewhere, they would not get in trouble with us and we would suppport them while taking whatever punishment may come our way. Through it all... they would earn respect of others, self respect, confidence and maintain their dignity and "manhood." Society wants to demasculinize men...again....read the book.....it is truly awesome. So sorry this is long but I feel this is important and I really believe in it.....an excerpt from the book on the subject: (I edited to try to shorten) "A few years ago my middle son Blaine made the big transition to first grade. This is a huge step for any child, but, Blaine is a very outgoing boy, a born leader, and we knew he'd handle it swimmingly. Every night revealed the days adventures, but one night he fell silent. 'What is wrong, tiger?" He wouldn't say...wouldn't even look up. "what happened?" I asked again. Then the story came out....a bully. Some first grade poser had pushed him down on the playground in front of all his friends. Tears were streaming dowm his face as he told the story. "Blaine..look at me." He raised his tearful eyes slowly, reluctantly. Shame was written all over his face. "I want you to listen very closely to what I am about to say. The next time that bully pushes you down, here is what I want you to do. Are you listening?" Blaine nodded, his big eyes wet and fixed on mine. 'I want you to get up...and I want you to hit him.....as hard as you possibly can." A look of emnarrassed delight came over his face...then he smiled. Good Lord...why did I give such advice? Why was he delighted with it? Why are some of you delighted with it, while others are appalled? Yes, I know that Jesus told us to turn the other cheek. But we have really misused that verse. If you hold up one passage of scripture while ignoring others, you will come to absurd conclusions. If Jesus intended to teach us, "never resist a bully," then why does he also tell his disciples. "But now if you have a purse, take it, and also a bag, and if you don't have a sword, sell your cloak and buy one." Buy a sword? He arms them. And that little matter of using a whip to clear the temple, that doesn't seem like turning the other cheek...now does it? We do not want to teach boys that bullies should never be resisted...and we do not want to teach bullies that they can get away with it! yes, scripture teaches the WISE use of strength and the power of forgiveness. But, you cannot teach a boy to use his strength by stripping him of it. We suggest that a boy who is mocked, shamed before his fellows, stripped of all power and dignity should stay in that beaten place. You will emaculate him for life. From that point on all will be passive and fearful. He willl grow up never knowing how to stand his ground, never knowing if he is a man indeed. Oh yes...he will be courteous, sweet even, deferential, minding all his manners. It may look moral, it may look like turning the other cheek, but it is merely weakness. You cannot turn a cheek you don't have...our churches are full of such men. At that moment...Blaine's soul was hanging in the balance. Then the fire came back in his eyes and the shame disappeared. Now, I gave that advice to a boy I could trust and at the time in first grade. I did not give the advice to a high school boy whose enemy could pull a gun on him. There is wisdom and context. But we must not strip a man of strength and call it santification. Yet for many, many men their soul will hang in the balance because no one, no one has ever invited them to be dangerous....to know their own strength...to discover they have what it takes. Why on earth would a young man have to ask permission to be a man? Because the assault on his masculinity continues. I don't mean to create a wrong impression...a man is not wounded once, but many many times in his life. Nearly every blow ends up falling in the same place....against his strength. Life takes it away, one vertebra at a time, until in the end he has no spine left."
  2. Two clear strep induced PANDAS boys: Both on long term proph. antibiotics for PANDAS. (they are not antibiotic dependent at this point) Both take Augmentin 250 mg a day. (very low dose and will see what PANDAS doc has to say about it at their annual next month....I am not sure it is even doing a thing considering their height and weight) Younger PANDAS son is 8 and 85 pounds....older PANDAS son just turned 12 and is 127 pounds. (DCMom your girls are tiny! ) One severe episode for younger son and 2 moderate episodes for older son. Both presented very differently from the same strep weeks apart. They both had several mini episodes over the years. Older son in complete remission and younger son symptom free most of the time but does show mild symptoms occasionally.
  3. Peg....I agree. I don't believe there is any way to tell the difference. BluYorkie....looks like something happened to your post. It happens.....I placed a quadruple post the other day! Anyway......maybe you just got busy but it looks like you were about to share your story. Looking forward to it! (and by the way...you got the quote thing down already! Something I have not been able to figure out yet....and I have been on here since 2007! Not a very good testament for the "smart", "highly intelligent" PANDAS parent phenotype! )
  4. Hi BluYorkie. Welcome to the forum and thanks for the heads up. I would still recommend tucking this info away because there are so many unknowns. I am looking forward to hearing more about you and your family. I imagine you have an affected family member that caused you to lurk and now join . Do you have a PANDAS child?
  5. Philly...yeah, you are getting my boys mixed up. The younger had sudden onset ocd, tics, hallucinations, etc....yes, he seemed possessed. My older son, just a few weeks after my younger son presented, woke up with multiple motor tics one day. (after they both just had strep....positive via rapid) Because my younger presented first and so severely, we knew what had happened to my older son and he was given antibiotics within 3 days of onset and had 99% resolution of tics in 24 hours. His tics (he also had stuttering) waxed and waned over several years but never ever got as bad as at first presentation. (he never got strep again either) He has been tic free for over a year now. He never once showed any signs at all of OCD. No personality changes either like younger son....just tics. Does anyone think that age of onset could have anything to do with the predominate tic presentation? (atlest that we are aware of...whether it be strep, vaccine, or vaccine damage meets strep)......
  6. Philly.....as you know my older PANDAS son only had tics on diagnosis. The current criteria says......OCD and/or a tic disorder including Tourette's.
  7. LLM....I was unaware of this. There may be many that are aware of this finding, (was it ever posted?? If so...I missed it) however, I do think it is a broad statement to say "the forum" has been aware of this for awhile. So, posted for those of us still in the dark about it. It is also helpful for "newbies" to be aware. (maybe get a pre IVIg blood sample as suggested.....good suggestion I think) For me...I do want to know what my child has/had. It helps for research purposes (for PANDAS recognition, acceptance and treatment) and I want my kids to know, too. I don't want them wondering what the heck was wrong with them. I want them to be aware for future generations also. I don't want them to have to scramble with it like we did if, God forbid, their kid/s come down with it. Not arguing here either. I think it is a very valid, reasonable article to put out there. One that shouldn't be argued down...just taken as is and the info. tucked away if not acted upon. To each his own and everyone's interpretation....his own. If I were treating my child for Lyme and co (and getting IVIg)...I would want to be made aware. Yes, the new Lyme test that is hopefully coming out soon....soon isn't soon enough! So many will be helped by it!
  8. No trying to "open a can of worms." However, I do think this is important to consider. Philamom.....MAY be involved in your daughters recent positive IGG Lyme tests given the IVIg she recieves. Just something to look into...if so desired. False-positive results of serological tests for Borrelia burgdorferi antibodies are recognised in a number of infections, such as syphilis, parvovirus and Epstein Barr virus, and in various other inflammatory conditions.1 We de- scribe a case where misleading positive Borrelia burgdorferi antibodies were caused by the administration of intrave- nous immunoglobulin. A 78-year-old man presented with bilateral ptosis, near complete ophthalmoplegia, bilateral facial weakness, are- flexia and gait ataxia. Initial investigations revealed subtle cranial nerve enhancement on MRI and mediastinal lymph- adenopathy on CT chest. He had normal acetyl choline receptor antibody and anti GQ1b antibody titres, making the diagnoses of myasthenia gravis and Miller Fisher syndrome respectively unlikely. The diagnosis was unclear but neurosarcoidosis was suspected and he was treated empirically with high dose steroids with no benefit. He then received an empirical five- day course of intravenous human normal immunoglobulin (IVIg) (Kiovig, total dose 2 g/kg) with apparent improvement. This was repeated approximately four weeks later, by which time his clinical condition had evolved to include a painful polyradiculopathy. Therefore blood was taken for Borrelia burgdorferi antibodies and was strongly positive by Western blot (nine specific bands), despite no history of tick exposure or rash consistent with erythema migrans. The patient was treated with intravenous ceftriaxone for possible neuro- borreliosis. However, we were suspicious the positive result might be attributable to his IVIg treatment and managed to track down a serum sample taken just prior to his IVIg treatment but after his neurology symptoms had been present for over two months. This pre IVIg sample was negative for Borrelia burgdorferi antibodies on western blot. His cerebrospinal fluid was acellular, which makes neuroborreliosis less likely, and Borrelia burgdorferi DNA was not detected by PCR. Given the gentleman had been bed bound between the two samples with no opportunity for tick exposure we concluded the positive result was a confounding effect due to receiving pooled donor IVIg. A repeat sample taken two weeks after the positive sample remained western blot positive but with fewer bands (eight positive bands) and noticeable reduction in intensity, in keeping with decay of transfused antibody. The patient continued to deteriorate neurologically and no firm diagnosis was made in life despite extensive investigation. The final autopsy diagnosis was encephalomyelitis of presumed paraneoplastic origin based on the pathological appearances although no tumour was identifiable. There was no evidence of sarcoid or infection. Intravenous immunoglobulin is an important treatment for a diverse range of conditions, particularly in the fields of neurology and haematology.2 It is prepared by extracting IgG from large pools of plasma donations (>1000 donors/ pool) under strict regulations as laid out by the World Health Organisation (WHO) and Food and Drug Administra- tion (FDA). Its safety relies on donor selection, screening of each plasma donation for blood borne viruses, plus addi- tional virus inactivation procedures.3 Intravenous immuno- globulin has a half-life of approximately 22 days3 and pooled IgG contains antibodies to numerous microorgan- isms, which the donor population has been exposed to, in- cluding measles, hepatitis A, B and C, varicella and tetanus. The human plasma used to manufacture IVIg in our case is sourced from USA, Germany, Austria, Czech Republic, Swe- den and Switzerland. Lyme disease is endemic in all of these countries, with significant background seropreva- lence to Borrelia burgdorferi in the population. All this has potential implications when interpreting serological tests in IVIg recipients. There are case reports describing misleading positive results for infections such as syphilis and Toxoplasma following passive transfer of antibodies via pooled human IgG.We found a single case report in literature of false positive BB test secondary to intravenouous immunoglobulin. A number of clinical presentations which may mimic neuroborreliosis are treated with IVIg. A misleading positive antibody result may expose a patient to unnecessary and potentially harmful treatment and delay the correct diagnosis being made. We found no mention of this potential adverse effect of intravenous immunoglobulins in the Department of Health ‘Clinical Guidelines for Immunoglobulin use’ or the Association of British Neurologists ‘Guidelines for the use of Intravenous Immuno- globulin in Neurological Diseases’.2,9 Clinicians need to be aware of possible confounding effects of IVIg on subsequent serology tests, and communicate with the laboratory if their patient has recently received intravenous immuno- globulin. Futhermore, we recommend that where IVIg is being used without a firm diagnosis, serum should be stored before administration of IVIg to provide a baseline sample which enables retrospective testing, should this be required.
  9. My sons very first symptom of PANDAS was stuttering. It started after his kindergarten shots. Then, it disappeared in about 2 months. 2 years later (age 7) he contracted the strep that sent the PANDAS symptoms soaring. He also developed the stuttering again...it, along with a neck tic, were his most persistent symptoms. My sons stuttering would wax and wane along with illness for the next 3 or so years. He always got so frustrated by it. It has been well over a year now that I have not heard the stuttering or have seen the infamous neck tic. He is now 12.
  10. Oh shoot! Disregard all this...even the link. Apparently he says stress...not strep. SORRY!!
  11. Watch the first video in this article. It is of an earlier news report. They interview one of the girls and then it shows a clip of a spokesman from the NY Dept. of Health being interviewed via phone. He first says that they have ruled out environmental and infectious causes, but, he then goes onto say that other factors may be involved....such as strep. Good thing we got the top brains working on this! http://gaia-health.com/gaia-blog/2011-12-28/tourettes-like-outbreak-in-girls-of-one-school-only-explanation-is-hpv-vaccine/
  12. My younger PANDAS son is the loudest person I have ever met. We are constantly telling him to lower his voice. My older. much milder PANDAS son is the exact opposite...we can't hear him and are constantly telling him to speak up!
  13. Wow...maybe it was meant to happen there to slap those guys upside the head!
  14. Dr. Seigel had a good point...how can this not be considered a public health risk? /quote] That is right! This is so crazy. I really liked how he also said it was "very common." Finally! What about...Gardasil vaccine (all girls of that age...and hence the big cover-up) resulting in a compromised/over stimulated immune system meets strep??
  15. Well, for me, I find it hard to believe that 12ish girls all contracted Lyme around the same time and then all developed sudden onset tourette like symptoms from it at the same time also. Just not plausible in my mind......but,that is me....no surprises there. (and I, personally, will leave the subject on Lyme and this situation rest at that.) Anway...thanks to some info. via the Pepsi Refresh site...I found the link. He talked about it at the end of a segment he was doing about eating processed meats. http://video.foxnews.com/v/1389322627001/processed-meat-linked-to-pancreatic-cancer
  16. I will look...but, I am not so good with links. I saw it though...and he said it!
  17. FOX just aired a segment on it with A Dr. Siegal weighing in. He stated he has NO DOUBT what this is. He went on to say it is caused by a strep infection (described and named PANDAS) and it is treated with antibiotics!! WOW! National coverage via a major news network. Now you know the parents have to be aware....now it is in their hands to be proactive and not buy the bull that is being handed to them. (which that James Dupont doesn't seem to be buying!)
  18. Julie..... Please check this out. http://en.wikipedia.org/wiki/Dopamine_beta_hydroxylase_deficiency Some things make a lot of sense......
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