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nicklemama

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  1. Like
    nicklemama got a reaction from MaureenL in Request for success stories please!   
    I have a fear of posting this. Don't want to jinx things. After 4.5 years of dealing with this, DS, 10 has been very stable for his longest stretch. We have weathered a stomach virus, 3 colds w/ a terrible cough and a viral illness of some sort that produced a fever of 102. All this without even a blip this winter season.
     
    He had sudden onset with every listed symptom. Severe but has always managed to go and do well academically in school. IVIG twice. The big turn around has come after treatment for ehrlichia and anaplasma for the past year with augmentin and biaxin that also treated the Lyme we just got a strong positive on thru Igenex this week. He is not showing active infection but is 5 bands positive IgG.
     
    I'm not ready to say he's completely out of the woods but it's the first winter he's not flaired since this started in Oct 2009.
  2. Like
    nicklemama got a reaction from Sirena in Heartbroken--I feel like were losing ds, age 6   
    When PANDAS kids fail to get better, it's time to look at Lyme and coinfections. Been there, done that.
  3. Like
    nicklemama got a reaction from MissionMama in I want to know the "why's".....   
    As the mother of a son who has no history of tick bite and also had completely normal titers every single time it was tested and never positive for strep throat culture, I highly advise you to find someone has qualifications to diagnose lyme disease and have him tested by a specialty lab for lyme and also for the coinfections of lyme......ehrlichia, anaplasma, bartonella, babesia. My son was treated for PANDAS for two years, even though he never had strep titers and had high dose IVIG twice but it was not lasting. When I finally took him to see an LLMD, he came back positive for lyme through Igenex and positive for ehrlichia and anaplasma through Quest. He has bartonella but he has never tested positive for it. Treatment for lyme and coinfections has made all the difference. He still has the PANS portion of it, though and has small flares in behavior when he is sick or loses a tooth. He is now 12 and just lost the last baby tooth. I celebrated.
  4. Like
    nicklemama got a reaction from sf_mom in New Here - Seeking Support and Guidance   
    Test for every thing. My son had classic PANDAS presentation but we never found him to have strep or be positive on blood tests for strep. Two years of treating for PANDAS brought him some relief but he was still struggling. Changed doctors, who tested him for Lyme and coinfections and there was our answer. Test for everything and don't limit yourself to a narrow focus on one infection. It will save you time, money and most importantly get your child well in a shorter period of time.
  5. Like
    nicklemama got a reaction from Mimi4 in Handling Raging Behavior   
    Lamictal. Hold him exactly like Heather describes above. Treatment with abx and IVIG puts the damper on the raging for our son. When he's doing well, he gets angry but he doesn't go crazy with rage. Name calling, spitting, hitting, kicking, scratching, head butting. I am acquainted with all those, unfortunately.
  6. Like
    nicklemama got a reaction from WorriedDADNMOM in disappointed / pissed by neurologist app't -- what should I have expected?   
    I hate to be an echo but......move on. I was told by a neurologist that my son's sudden, dramatic change was due to my lack of firm and consistent parenting. I took him there because he was so suddenly not himself in such a dramatic way, I thought he might have a brain tumor. It was the first of my many disappointments with doctors.
  7. Like
    nicklemama got a reaction from Mary wag in Lyme and Ehrlichiosis - Neuropsychiatric presentation only?   
    My son's lyme and coinfections were dormant too, until FluMist. The most significant treatment that was a game changer was adding a second antibiotic and treating for his lyme and coinfections. We messed around treating PANDAS, even though he never had strep, for far too long and it just didn't work. Augmentin and IVIG just didn't do the trick. My son has never had a known tick bite, although we have camped many times in lyme endemic areas of our state, where in a few counties, upwards of 80% of ticks tested are carrying lyme. Lyme was not on my radar then.
  8. Like
    nicklemama reacted to Rlz in Doctor won't renew augmentin-so terrified   
    Thank you to all of you. I was able to get the augmentin from a local doctor. Pandas is such a nightmare and I feel for every child and family dealing with it.
  9. Like
    nicklemama reacted to MomWithOCDSon in Strep going around in school: advice?   
    If you were to try and keep him home through "strep season," I'd think you'd wind up keeping him out of school much of the school year! At least he's in middle school rather than grade school, so I imagine incidences of strep decrease somewhat at his age, but when my DS was 12, someone in one of his classes, or one of his friends, would have strep it seemed like every other week!
     
    There are reports of "breakthrough" strep infections, even when a kid is on abx, so you do want to be vigilant. Is he on treatment dose or prophylactic dose?
     
    I would talk with your doctor about it. The thing is, with the speed at which it can spread and the staggered incubation periods among kids in the school, it will be hard to know when to keep him home "prophylactically," and when it's likely safer for him to attend. So I would see if he can continue to take a good dose of abx through the winter months, at least, make sure he's practicing good hand-washing and similar skills, and if you know his lab partner has strep, then keep him home for the day.
     
    It's dicey, I know . . . hopefully he's old enough now, though, that he can tell you if he's feeling "off" or any other signs that he's taken on an unwanted bug. Good luck!
  10. Like
    nicklemama reacted to rowingmom in First Review of Secret Monsanto Studies Shows Glyphosate Cancer Cover Up   
    "Speaking on the day of publication, Dr. Samsel said: “Glyphosate is a reactive product that causes damage at the molecular level. Chemicals that disrupt the microbiome and immune function do not belong in our food supply . To allow any living creature exposure to such a product is, in my opinion, poor judgment by government agencies and serves only to benefit the purses of corporations and their investors. Future generations will judge our actions or lack thereof and surely condemn those who repeat the errors of the past.”
     
    http://sustainablepulse.com/2015/11/06/first-review-of-secret-monsanto-studies-shows-glyphosate-cancer-cover-up/#.Vk3pg_9dHct
     
    The full paper can be found here:
     
    http://www.researchgate.net/publication/283490944_Glyphosate_pathways_to_modern_diseases_IV_cancer_and_related_pathologies
     
    If you are consuming GMO or conventional grains, legumes and/or conventionally (confined) raised meat, you are ingesting glyphosate.
     
    It's high time that RoundUp is implicated not only in the development of cancer, but in other chronic conditions caused by supressed immune function.
  11. Like
    nicklemama got a reaction from MomWithOCDSon in Please help; discouraged and sad   
    That is a curious thing to say about probiotics, given antibiotics kill off beneficial gut bacteria and set you up for gut issues and possible C Diff. The standard for long term antibiotic use is a good quality probiotic a minimum of two hours before or two hours after antibiotics.
  12. Like
    nicklemama got a reaction from CYAZ in Levofloxacin needed after T/A removal "Help"   
    I took Levofloxacin for 2 months to help me get rid of bartonella. My LLMD also had me take high doses of magnesium (400-600mg). Use only magnesium taurate, malate or glycinate. Other forms are not readily absorbed. I also was told to take 100mg of B6 (P5P) twice a day. This is to mediate the possibility of tendonitis/rupture and also to mitigate potential neuropathy that can occur taking levofloxacin. I would also recommend taking high doses of Alpha Lipoic Acid. I am still taking 300mg, 3x a day. My integrative doctor recommended adding the ALA.
     
    I was also told NO jumping, running, lifting weights or doing ANYTHING, other than walking due to risk of achilles tendon rupture.
  13. Like
    nicklemama got a reaction from MomWithOCDSon in A Panda Goes to College!   
    I loved reading this update. So happy for your son. Gives me hope that mine can go off to college and have a normal college experience like others. My son has also reached another educational milestone. He went off to middle school last week. He reports he loves it. We were holding our breath. He was placed in the academically talented program and that required him to go to a different middle school,away from all his friends and the kids in our neighborhood. He has been able to deal with all the bumps that go along with middle school, so far. He came home laughing yesterday and telling me he accidentally went into the girls bathroom, lol.
     
    Hooray for your son. There is a light at the end of the tunnel.
  14. Like
    nicklemama reacted to mama2alex in Ready to buy meds online, can't get help.   
    I recommend starting a new thread with a title something like "Need PANDAS-literate/Lyme-literate MD in Manitoba." That way more people will see what you need right away. And if you see a doctor who knows PANDAS AND Lyme, you will be in good hands.
  15. Like
    nicklemama got a reaction from HopeforHealth in Ready to buy meds online, can't get help.   
    I think you are in Canada. Let us know exactly where so we can guide you to doctors. Few of us have pediatrician helping us. Most of us go to doctors willing to help and that is where you need to head.
  16. Like
    nicklemama got a reaction from mama2alex in paralysis: entero-virus, lyme, other, both, all?   
    Guillan Barre is a complication of vaccines and specifically the flu shot.
  17. Like
    nicklemama got a reaction from EAMom in 6 yo w/Childhood Onset Bipolar Diagnosis   
    Wow, thanks for thinking about us. A lot has happened in three years. After IVIG twice and relapsing, I took my son to an LLMD 2.5 years ago. He has Lyme, ehrlichia, anaplasma and bartonella. Treatment has brought the healing we were looking for. He is still being treated with antibiotics and supplements. He is as normal as the next kid. He can get hyper and overstimulated by other hyper kids but no one would tell you he acted out of the ordinary for an 11 yo boy. He goes to middle school in a few weeks and he's going into the academically gifted program.
     
    I urge you to find a good and reputable LLMD to do a thorough evaluation and testing of your son. Unless you see someone who truly knows and is qualified to diagnose Lyme and co infections, you will not get a proper evaluation for Lyme. Have you seen a PANDAS doctor?
     
    After my experience with my son, I would never accept a psychiatric diagnosis until PANDAS, PANS and Lyme/co infections had been thoroughly ruled out by qualified doctors.
     
    I wish you the best in your search for answers and healing. Contact ILADS for recommendations for doctors in your region. I'll send you a pm.
  18. Like
    nicklemama got a reaction from Shupermom in New Here - Question about possible PANS   
    That sounds suspiciously like PANDAS. Is he still symptomatic? If not, I would document this and keep a very close eye out for symptoms to return, especially if he has another illness or if he's exposed to illness, particularly strep. If he is still symptomatic, as in having these intrusive thoughts, I would skip the therapist and find an expert to evaluate him for PANDAS.
     
    If the intrusive thoughts or other symptoms of OCD, anxiety or tics pop up again, I would take him to the ped and insist on testing for strep and I would find a PANDAS expert to guide his treatment, strep positive or not.
  19. Like
    nicklemama got a reaction from fencelatitude in 6 yo w/Childhood Onset Bipolar Diagnosis   
    Wow, thanks for thinking about us. A lot has happened in three years. After IVIG twice and relapsing, I took my son to an LLMD 2.5 years ago. He has Lyme, ehrlichia, anaplasma and bartonella. Treatment has brought the healing we were looking for. He is still being treated with antibiotics and supplements. He is as normal as the next kid. He can get hyper and overstimulated by other hyper kids but no one would tell you he acted out of the ordinary for an 11 yo boy. He goes to middle school in a few weeks and he's going into the academically gifted program.
     
    I urge you to find a good and reputable LLMD to do a thorough evaluation and testing of your son. Unless you see someone who truly knows and is qualified to diagnose Lyme and co infections, you will not get a proper evaluation for Lyme. Have you seen a PANDAS doctor?
     
    After my experience with my son, I would never accept a psychiatric diagnosis until PANDAS, PANS and Lyme/co infections had been thoroughly ruled out by qualified doctors.
     
    I wish you the best in your search for answers and healing. Contact ILADS for recommendations for doctors in your region. I'll send you a pm.
  20. Like
    nicklemama reacted to HopeinHIM in Heartbroken--I feel like were losing ds, age 6   
    Now that I have stopped crying from reading your post, I can join in with these wise women. DO NOT GIVE UP!!. Your story was/is my story. Our son has PANS/Bart/Babasia. Many doctors and much $$ and finally we began to treat Bartinella and Lymes and he is coming alive again!! We began by treating just PANS/ cox socci. Labs said NO co infections or Lyme's so I moved on. One horrible year later I revisited the possibility of Co infections thanks to this forum. Our son can't detox so we go very low and slow on Rifampin. We have implemented lots of detox herbs along the way along with organic clean food and WATER!!! Certain children with specific genetic predispositions can not handle all the crud that is in our environment and food so they fall apart physically and psychiatrically AND (infections can push them over the edge). We were told by the best PANS docs and top ND's that Lyme's didn't seem like part of the picture. But then, one LLMD disagreed and encouraged us to treat. Our PAND doctor (who I still use for various reasons, still is NOT interested in the LYMES component)BUT I can tell you that my raging, OCD, mentally crippled child is returning. NO more raging and no more OCD. He is laughing again (thank God)He will tell me "Mom, my head is clearing and I am feeling like old me!!" Rowing Mom is giving you amazing information. Read and apply! Do not give up. Your boy is inside there and persevere until he returns. He is the child who wants to bike ride and canoe but inflammation has sabotaged his mind for now. Our 6 year old niece is manifesting the exact same symptoms as our son (your son) did and we are immediately investigating co infections. Not waiting on labs. During the 23andMe test we find that she has the same genetic mutations as our son. (detox issues, Methyl issues)
    For some children the steroid bursts and prophylactic anti B's hold them. However, Steroids can be very bad for PANS/Lyme's kids. This is a journey and no two children are the same. I have also discovered that NO doctor knows all . Each seems to have only a piece of the puzzle. It will be up to YOU to put it all together to bring him to the finish line!!
  21. Like
    nicklemama got a reaction from sf_mom in Heartbroken--I feel like were losing ds, age 6   
    Yes, I agree Rowingmom. When I say Lyme I am implying Lyme and or coinfections. I use that term because most recognize it. Fact is, my son actually has MSIDS. Multiple Systemic infectious Disease Syndrome with Lyme and coinfections at the root of it all.
  22. Like
    nicklemama got a reaction from sf_mom in Heartbroken--I feel like were losing ds, age 6   
    I came to this board in 2010, after my son had been suffering for a year without treatment. I was encouraged to seek treatment, even though my son never had strep and his titers were normal. I traveled out of state and treatment started helping but he never got really well. All during this time, any suggestion of looking for Lyme was met with strong opinions and objections by many and people got quite nasty about the mere suggestion of looking for Lyme, so I stayed the course with PANDAS and the board spun the Lyme group off separately.
     
    In two years, I spent tens of thousands of dollars on IVIG and expensive PANDAS providers out of state. My son got marginally better then relapsed after each IVIG.
     
    I found a local doctor who was beginning to treat PANDAS. She was also treating kids with ASD and quite a few Lyme patients unbeknownst to me at the time. She suggested to me my son needed to be tested for Lyme and coinfections. Surprisingly, he came up positive. It really bothers me, nearly five years later, to see others so easily discount and discourage a look into Lyme. I waisted valuable time and money by not looking into all infections before pigeon holing my son and taking even more time to achieve wellness.
     
    I sincerely hope this board is not going to go down the no Lyme road again. It's a disservice to every child.
     
    I don't know how long Sirena has been at this. She doesn't say in her signature. What I meant above is, if PANDAS treatment is not working or your child is relapsing and not achieving a good and lasting wellness, it's time to look at other things. Treating PANDAS does not treat Lyme, of that I can tell you absolutely and for certain.
  23. Like
    nicklemama reacted to mama2alex in Heartbroken--I feel like were losing ds, age 6   
    I'm so sorry. I've been where you are - pretty much everyone here has. Early on, once I finally got my raging, obsessed, terrified 9yo to bed, I'd go out for a drive and cry my eyes out almost every single night. It's horrifying and terrifying to watch your child go through this - and it's so lonely.
     
    Reach out to people on this board through PM. Arrange phone conversations and try to meet someone from your area in person. You can read and research all day, and that's essential. But connecting with other parents is crucial to your well-being.
     
    I noticed in your first post you said he'd been tested for Lyme due to exposure to ticks, and it was negative. Can you share what test was done? Was he tested for coinfections such as Bartonella, Babesia, Erlichia, Anaplasmosis, or Mycoplasma? I agree with others who've suggested looking for Lyme AND coinfections, but it's also important to get the right tests from the right lab, and have the child and test results evaluated by the right doctor. You can get lots of advice on the specifics of all this on this forum.
     
    Hang in there. You WILL get him well!
  24. Like
    nicklemama got a reaction from mama2alex in Heartbroken--I feel like were losing ds, age 6   
    When PANDAS kids fail to get better, it's time to look at Lyme and coinfections. Been there, done that.
  25. Like
    nicklemama got a reaction from MomWithOCDSon in low dose Abilify for rages?   
    Before I tried Abiify, which is an atypical antipsychotic, I would consider something with less potential for side effects, if you havent already. My son was on Lamictal for a year with good results. Lamictal is an anti seizure medication with a wide margin of safety and tolerance. It also has antianxiety properties and regulates brain glutamate, which can cause some symptoms in our kids.
     
    Lamictal has to be titrated up slowly to avoid a potential allergic reaction.
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