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tj21

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  1. Like
    tj21 reacted to Calimom6 in Help! Looking for young adult PANDAS/PANS doctor in Northern CA   
    Thank you @boysrlove24. Yes I have actually. It is looking like he has some type of autoimmune encephalitis as well. We are waiting to get into UCSF MS/Neuroinflammation clinic. Fingers crossed he gets in. It's been a long road to find out what all is going on with him. Hoping he gets some relief soon! 
  2. Like
    tj21 reacted to Chemar in LOUD Yelling Tic in DS17   
    Hi
    I replied to your post on the TS/tics forum
  3. Like
    tj21 reacted to Sheila in LOUD Yelling Tic in DS17   
    tj21 -- I know this must be so difficult. And first, let me apologize that I have not read your other posts where you may have discussed some of the additional efforts you have going on. Since you already have a functional medicine practitioner who is leading the way, and as Chemar mentioned, there are so many factors that could be involved, I'll just share a couple of thoughts that may or may not be a fit.
    It is possible with major immune issues to become hypersensitive to chemicals and allergens. I used to watch kids in the office of an environmental physician and saw a high pitched screeching tic triggered by formaldehyde exposure and a screaming tic triggered by mold exposure, etc. A food can also be behind it. Obviously you have a complex situation but do you think there are any environmental influences that may be playing a subtle role? For this, think in terms of an allergy to the nervous system--something doctors don't usually consider.
  4. Like
    tj21 reacted to Chemar in LOUD Yelling Tic in DS17   
    Hi
    I am hesitant to comment when there is PANS involved as there are so many variables included then....but when my son had loud yelling tics, l-carnitine was very helpful.
    We also always found acupuncture, Epsom Salts baths & Bach's Rescue Remedy helpful when any tics ramped up
  5. Like
    tj21 reacted to wisdom_seeker in Help! Strep carrier son infecting PANS sibling   
    The other question is whether you replace his toothbrush (and wash his cup well) before finishing the antibiotics, so that he's not re-infecting himself with the toothbrush?
     
    https://medlineplus.gov/ency/article/000639.htm
     
    So I'm not sure whether a tonsillectomy itself would prevent all strep infections. For example, for my kids, the primary site was sinuses, and all sore throats, ear infections, even pneumonia, were complications of the sinuses. What they needed was sinus surgery to remove the diseased tissue and improve drainage; that's why a tonsillectomy wasn't sufficient to reduce how often they got sick.
     
    Oh, they also needed to have their sleep apnea discovered and treated! THAT improved their sleep, which improved their immunity, which finally prevented the recurring sinusitis that antibiotics never got rid of for long. (And neither one snored, nor was overweight, both simply were usually tired and crabby and often sick)
     
    So YMMV, but it's really important to figure out what all is contributing to the bad immunity and/or sources of infection -- consider bad sleep, recurring stress, nutrition, regular re-infections from toothbrushes or another family member (or grandparent, babysitter or dog), etc. Figuring out these other factors will of course also help with fighting Lyme etc.
     
    Good luck!
     
     
  6. Like
    tj21 reacted to amyjoy in Anyone know current status of Amy Smith from California?   
    I"m right here. No changes.
     
    EXCEPT, while I was gone, over the summer, Mike my assistant was also gone. We hired a temporary person who was a friend of someone in the practice just to cover my calls and emails. And it turned out that this person was actually very nice but a total emotional basketcase and so many things fell through the cracks, it was awful and actually scary. At the exact same time 2 people went out on maternity leave and one of the nurses had to leave for personal reasons. Things are fixed now. We are still picking up the pieces and I'm so so sorry for the confusion.
     
    We also just hired a second person to work with only PANDAS families, and she is fantastic. Her name is Allison and you will love her.
    I'm very sorry this happened, it won't happen again, I promise.
     
    Sometimes things do go to the phone tree during the day if everyone is on the phone. Mike or Allison will get back to you promptly.
     
    There is also an internal email that if you send something to will go directly into the electronic medical record. You are free to use it to reach out, its a little weird but here it is:
    amysmithprint@gmail.com
     
    Here is my email, you are always welcome to contact me directly: amyjoysmithnp@gmail.com
     
    Many people do facebook me, in a pinch you can always do that.
     
    Sorry again, it was a transient issue and you fell into that weird moment, i'm so sorry.
    LOVE
    amy
  7. Like
    tj21 reacted to wisdom_seeker in Anyone know current status of Amy Smith from California?   
    Hi Wombat,
     
    I've heard mixed reviews on Dr. Harris, but generally only very positive comments about Amy Smith. She has been knowledgeable, positive, and cost-conscious -- that last one may come from having a PANS kid of her own, and seeing their life savings eaten up by medical treatments. and they work hard to do IVIG as cheaply as possible without the insane mark-up you can get in a hospital. In fact they now set up many IVIGs as in-home procedures, to minimize the cost and max the convenience.
     
    I certainly can't imagine her yelling at a patient! I've not seen anyone else but her, so I can't comment on that, but I am very picky about my kids' health care professionals, and we're keeping her as part of DS16s team. I have been able to say that he can't tolerate the taste of throat spray X, or doing Y, and she finds an alternative, which I appreciate. And when his CAMKII activation came back very high, she was unequivocal that he'll be a great candidate for IVIG, same as I'd later heard from Dr. T.
     
    I don't know why you're not getting any response to your phonecall. Mike, the nurse / admin / jack-of-all-trades may not always be available to pick up the phone, but I do get timely responses. I just don't remember if those are to phonecalls or emails. Have you tried contacting Amy through her website? I have to contact them this week as well, so I'll try to send an update with what I find.
     
     
     
     
  8. Like
    tj21 got a reaction from SSS in Anyone know current status of Amy Smith from California?   
    Hi - We see her. I didn't realize she had her own website with a contact form. The main office site is: http://www.pacificfrontiermedical.com/
     
    When you call the office, leave a message at x.0 for Mike, her assistant. I don't know if she's still doing long-distance phone consults.
     
    Yes, she was on vacation during the above-mentioned dates, so I would imagine she's even more backed up now. Especially since there are so few knowledgeable practitioners here, and Stanford Hospital is even more backed up.
     
    Good luck!
  9. Like
    tj21 reacted to MomWithOCDSon in Teen:incapacitating tics and issues   
    Wow! So sorry to hear what you're going through!
     
    Please forgive my ignorance, but this dramatic "seizure tic" that you describe . . . have you pursued a second opinion as to whether it's actually a seizure versus a tic? This seems to be a very complex tic, if that is "all" it is, and if it is so uncontrollable that it occurs when she's asleep, swimming, etc. and endangers her physically (concussions, etc.), to an untrained layperson like myself, it sounds more like an actual seizure than a tic. I know kids that have seizure disorder diagnoses, and their seizures have a lot of similarity with this one of your daughters. On the flip side, though I don't have a whole lot of experience with TS itself, I've been here on the PANDAS/PANs forum for several years now, and I've never seen a "tic" described in a similar manner as what you're describing.
     
    Has your daughter ever been prescribed an anti-seizure medication such as trileptal or lamictal, even if only on a trial basis? Some of us with PANDAS kids have been given prescriptions for lamictal "off-label" because our kids weren't technically diagnosed with a seizure disorder but because it is beneficial on other fronts (modulates brain glutamate, an excess of which can contribute to behavioral disturbances, including OCD).
     
    In short, given as your daughter's troubles began on the heels of a discernible medical illness, I think it is highly possible PANDAS/PANs is at issue here. Did the pediatrician that your daughter saw -- though dismissive -- order any blood work at all? Have you had immune panels done, or the Cunningham panel? If your regular pediatrician is of no help in this regard, will your psychiatrist order the blood work on your behalf? When you say she was "negative for strep," do you mean by throat swab? My son was ALWAYS negative for strep by throat swab; it wasn't until we had his strep titers tested that we realized he DID have strep -- he was just classically asymptomatic to it. That being said, it doesn't have to be strep that sets off this condition, either; it could be myco p, lyme, Epstein barr, any number of other microbes that set off an immune response/antibodies that get past the blood brain barrier (BBB) and wreak havoc in the brain.
     
    I would follow your instincts and continue to pursue some real answers that might, in the end, provide your daughter some relief. If you haven't already, you might drop a similar post regarding this tic over on the TS board here, too, and see if anyone who participates there can share some similar experiences and/or successful interventions with you.
     
    All the best.

  10. Like
    tj21 reacted to lissy0098 in Wondering if we should try medication   
    Hi, I was diagnosed with Tourettes, OCD, and ADD when i was about 10 years old. I had severe tics. head shaking, neck jerking, grunting, throat clearing, and many more. my parents were hesitant to put me on meds as well. my tics got so bad though, that i would call home each day to ask if i could leave school. my parents realized that if i wanted to live, a healthy, normal life, then I would need the extra help from meds. my grandparents were totally against it, but my parents were desperate. i have been on countless medications over the years: risperidal,clonodine, orap, tenex, and many more. Yes the side effects aren't always the greatest. but to me the weight gain, and tiredness were worth it. I am now a college graduate with a full time job. It might sound really scary, but it's all about finding the right meds. you just have to keep at it. hope i helped ease your mind.
  11. Like
  12. Like
    tj21 reacted to sf_mom in Tick   
    Ticks carry much more than Borrelia. As you are probably know ticks can also carry: Bartonella, Babesia, Mycoplasma and many more infections not even testable at this time. For example, Borrelia Miyamotoi is more predominant in Northern CA than Borrelia Burgdorferi and is not testable at this time.
     
    In my world, the 'Lyme World'..... always treat the bite.
     
    You can send the tick to Igenex as well and have it tested for Borrelia Burgdorferi, Bartonella Henselae, Babesia Ducati and Babesia Microti.
  13. Like
    tj21 reacted to mama2alex in Tick   
    You shouldn't leave this to chance. When my husband had a tick attached a few years ago, we sent it to Igenex for testing. In the meantime, our son's LLMD gave my husband a month of Doxycyclene. When the testing came back, the tick did carry Lyme, but no coinfections, so the Doxy was enough and they gave him an additional month of it just to be sure.
     
    A bullseye rash will tell you if you have Lyme, but doesn't tell you anything about coinfections. Also, lack of the rash doesn't mean no Lyme.
     
    If you wait to see if you get sick, by that time you'll probably face a huge battle to regain your health. Better to just treat the bite while figuring out exactly what the tick was carrying.
  14. Like
    tj21 reacted to dasu in IVIG - how long does it take to work? success stories needed!   
    I believe our kids have had the 2g/kg dose over two consecutive days. Is your doctor planning on administering IVIG on a monthly basis?
     
    Our kids have had IVIGs but we have yet to really get to lasting success yet. We did notice a gradual improvement over the course of 4 months though, looking back. (With all of the fluctuation in symptoms, its hard to assess progress in the moment)
  15. Like
    tj21 reacted to emst in Help, exacerbation of symptoms after starting Azithromycin   
    I feel that what you describe is likely to be die off and would not be too quick to change antibiotic. The dose/amount may actually be too low. Ask if you can do a trial of a double dose. You can use activated charcoal a couple of hours after giving the antibiotic to mop up the die off. See if it helps. Do you give Advil or Motrin? If not this would be a good idea, not tylenol.
    Back when we started we started with Zithro at 250 (I think) and then went up to 500 for a week then back down to 250 and stayed there unless there was a flare -- this was for my daughter, my son was always on Augmentin Double or triple dose for years. Both kids are done after many hears of treatments. Doses can be different.
    Suggest you find a MAPS doctor ASAP. Typical doctors dont have the clinical experience that the MAPS doctors have -- the maps doctors tend to tend to have more supportive protocols. You may have to travel.
    xo, hope it helps. Lmk if you need more help.
  16. Like
    tj21 reacted to Mayzoo in CBD oil decisions   
    The version we give to our child is not based on anything classified as an illicit "drug". It is CBD oil derived from HEMP, not marijuana. Hemp is not classified as a "drug" and is so low in THC it has no psychoactive properties that I am aware of.  
    My daughter is very delayed and has no tangible idea what "drugs" are, so converying this to her would be meaningless.
  17. Like
    tj21 reacted to MomWithOCDSon in Were you able to do just one IVIG with Dr.B?   
    I'm sure others will chime in here, and many have for more experience in this area than do I, but I wanted to make sure and keep the thread alive and can at least tell you what I've seen.
     
    When IVIG was first being implemented as a treatment for PANDAS, the thought was that a single high-dose infusion, perhaps two at the most, was all that would be required; there are still practitioners who generally follow that protocol, and there are children for whom it has been a successful treatment.
     
    However, for PANDAS suffers who have a documented immune deficiency (if your child has this, it should have been explained to you at some point), then regular IVIG treatments for a period of time are not atypical; but I would also think that, provided your child's blood work speaks to that immune deficiency, your insurance should cover at least a portion of the treatment.
     
    In the end, I think you're going to need to speak directly with Dr. B. for a fuller, better explanation as to the treatment protocol and the reasons behind it; unfortunately, I don't think that should have been left to the scheduler or receptionist behind his front desk.
  18. Like
    tj21 got a reaction from MaryAW in Can it be PANDAS with no OCD?   
    OCD can also take the form of sort of a "cognitive OCD," repetitive thoughts/vocalizations, also driven by anxiety, not just physical rituals. Ds15 will ask over and over for reassurance, which is an OCD-like way of trying to "feel just right" (which is hard to maintain w/OCD).
    Our CBT works on above with us.
    Don't rule out PANS.
  19. Like
    tj21 reacted to qannie47 in Co-Morbid Discoveries with Pandas DS   
    5 days no tantrums. Calm and happy. Dont want to jinx it but doc said if its going to work we would see results in a day or two.
  20. Like
    tj21 reacted to melmix in low dose Abilify for rages?   
    This is just my son's experience but it was horrible for us. We had him on almost everything at some point (this was pre PANDAS/Lyme diagnosis).
    His worst were Seroquel and Abilify. I will say thought that both his psychiatrist and therapist (who both work only in that field and do not have any
    pandas patients) had never seen that reaction before. They said both of those are much more likely to do nothing than to cause more problems.
    Just one of the reasons they finally started accepting he might have an infection related problem.
    Melrmix
    DS 8 PANDAS/PANS/Lyme
  21. Like
    tj21 reacted to nicklemama 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.
  22. Like
    tj21 reacted to putting together the piece in Doctor's letter requesting IEP -do have a copy you could share?   
    Emst is correct. If your child has not already been evaluated that is step one. You as a parent can request an evaluation directly from your child's special education department. After the evaluation if you are denied an IEP follow my prior advise on crafting a letter.
  23. Like
    tj21 reacted to putting together the piece in Doctor's letter requesting IEP -do have a copy you could share?   
    Go to webpediatrics.com read the information on PANDAS/PANS/PITAND you can craft a great letter pertaining to your childs needs based on a lot of the information Dr K. has published on this site. Have your doctor sign it. Send it in with a request for an IEP. If you are denied ask for mediation. You may get offered a 504 plan instead of an IEP initailly if this is the case case also ask for mediation.
    A 504 plan is good but an IEP is much better. You will be asking for OHI (other health impaired) as your disability.
  24. Like
    tj21 reacted to Lkaanda in Does IVIG help with tics and allergy shot question.   
    Thank you for your help. We have not done the Cunningham Panel yet. We talked about it, but did not feel it would change the outcome of the treatment. And of course since our insurance doesn't cover anything we are doing we have to really watch where we spend our money. Unfortunately the IVIG will be out of pocket which I believe he estimated at $5000.
    We are very hopeful that this will help him with his tics, its nice to hear that it has helped other kids. Now to figure out the allergy shot part of it.
     
    Thanks again for your quick replys!
  25. Like
    tj21 got a reaction from putting together the piece in Child in Psych ward need advice asap. please!   
    Glad to hear @nicklemama 's experience w/Lamictal, in same class as Trileptal and Topamax. We were going to go to Lamictal if Trileptal didn't work for ds15. Gradual increase is needed with most of these meds, but unlike the SSRIs and antispychotics needing to be uber-low doses (per Dr. Swedo), the anti-seizure meds can be dosed higher, at least w/our PANS child.
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