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  1. Like
    emst got a reaction from dasu in Comprehensive strep swab   
  2. Like
    emst reacted to dcmom in Homebound?   
    My kiddos are highly functional when well, and when flaring ocd prevents them from getting to school (and even doing schoolwork at times). We have an IEP which gives them homebound instruction on the 5th day absent from school, without additional doctors notes. Both of my girls have spent significant portions of their school life on homebound, yet also have spend a lot of time in school and doing really well.
    How long has your child been experiencing pandas symptoms?
    I think homebound is a good option, because I wouldn't want to make any decisions until he is treated.
    Good luck!
  3. Like
    emst reacted to WorriedDADNMOM in Increased flare when starting ABX?   
    I would say for us, we did see an increase in some signs. Tics.....and.....letdown of mucous on previous asymptomatic infections.(other than behavior)
    Are you on a DAN protocol???? There is a list of good practitioners......Here it is.
    We did talk to Dr K in Chicago upon learning about Pandas/Pans back in 2011. We did not want main stream medicine as we felt it was over their heads. We ended up finding a DAN doc for the behaviors..... the Doc in Gahanna(columbus area) OH whom we have been VERY pleased with.
    If your child does not see one....I recommend seeing one that can:
    1) debulk infections.
    2) Chill immune system.
    3) control inflammation.
    4) Check for food allergies and others.
    5) Supplement vitamins and minerals that are lacking.
    6) Control and support future infections.
    Finally, it really is a puzzle of many/various things that need looked at. It must be a comprehensive investigation into our kiddos to help them be the best.
    PM me if you need anything else.
  4. Like
    emst got a reaction from LNN in Recommend doctor that will treat more naturally?   
    Nancy O'Hara and Gail Szakacs http://ihealthnow.org/first appointment is in person, need 1 in person appt per year other appointments can be via phone. They do not accept insurance. Great, great reputations. They are among the most experienced and qualified doctors in this field. May take some time to get an a first appointment.
  5. Like
    emst reacted to rowingmom in Lyme and Ehrlichiosis - Neuropsychiatric presentation only?   
    Please make sure he is also tested for the other coinfections (babesia, bartonella, mycoplasma etc.), bartonella especially if he is having neuropsychiatric symptoms, babesia because of the vertigo. These are stand alone infections; lyme infection is not a prerequisite.
    Psychoimmunology of Tick borne Diseases and its Association with Neuropsychiatric Symptoms:
  6. Like
    emst reacted to WorriedDADNMOM in disappointed / pissed by neurologist app't -- what should I have expected?   
    Wisdom....Move on.
    I really recommend NOT PAYING!!!!! If you not happy with the service or appt.....treat it like a meal or any other service.....don't pay the bill.
    Explain why to them and definitely move on. Try to find a pandas friendly doc/Integrative Pedi in your area.
    Best of luck to you!!!!
  7. Like
    emst reacted to qannie47 in disappointed / pissed by neurologist app't -- what should I have expected?   
    I had similiar experience with hospital/neurologist. In fact, they called the psych unit during our stay and had me evaluated under the pretence of examining my son. Impressive. Fortunately the psychiatrist was discerning enough to see that I was not a nutjob and that my child was sick...
    The neurologist was about as cocky as the one you experienced. His works were, "Why don't you take him to talk to someone, see how he feels about things....?".
    My advice, move on and forget the whole thing happened.
    Sorry you had to experience that.....
  8. Like
    emst reacted to rowingmom in disappointed / pissed by neurologist app't -- what should I have expected?   
    Yes. Move on.
    You don't have time to feel upset by what this doctor has done - don't let this distract you at all from finding the proper answer.
  9. Like
    emst got a reaction from tj21 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.
  10. Like
    emst got a reaction from Bella1604 in Please help; discouraged and sad   
    What med are they on?
    My experience Drs often start meds and then kids develop a fungal problem which i m o does not mean discontinue but continue the therepy ot increase the dose sometimes and treat the fungal problem.
    Call, call , call. Call the office, call the service if they have one. A lot of families are still on vacation which would include docs or their staff. Most doctors want you to report the problem. Encountering a problem at this juncture does not mean you are sunk, really. It likely means they are progressing and need help. Many people have die off at this juncture. Die off can be treated with activated charcoal. Look in to it. We use it for a milliom maladies.
    F W I W Examples of antifungals would be dyflucan, ketoconazole etc.
    Look in to the activated charcoal as well.
  11. Like
    emst got a reaction from mmiglio in herbs for sleep?   
    Cross my heart I'll tell you I did not sleep for 16 years and as much as I tried every distressing product and protocol finally the one that helped was a Hyland's product called Biochemic Phosphates instructions are on the bottle -- like many homeopathics this one said to take it 2-3 times a day as needed and as much as every 15 minutes until no longer needed. That was me however I only had to do it 4 times to get to the relaxing sleep dose the first couple of times then I got down to just once or twice before bed.That was heaven for me. I was having some breakthrough waking and learned about Calc Carb (Boiron) and that it could be used for inducing sleep, That helped with night waking but is also OK on its own and I no longer use Biochemic Phosphates. Many nights I dont need it at all now, good luck to you.
  12. Like
    emst got a reaction from putting together the piece in Doctor's letter requesting IEP -do have a copy you could share?   
    What state do you live in?
    Getting an IEP is more involved then just a letter.
    Find someone local who can mentor you because the already know the ropes. It can be a friend
    of another parent or you can hire a mentor or a lawyer.
    A book like "From Emotions to Advocacy" is a good start as is the book "How to compromise with your school district without sacrificing your child."
    (Sadly) I'll suggest that you not assume that your school district has your interests in mind.
    Go in to your meeting with a list having done your homework asking for all the services that you think he needs and behaving as if you have a seat at the table (which you do you are a member of his team) vs. many people go in just wondering what their child will get or be given from the district.
  13. Like
    emst got a reaction from mmiglio in NAC dosing and side effects?   
    We use "pharmanac" and find it quite gentle and quick acting, supposedly has best absorption of all Nac, recommended by Dr.
  14. Like
    emst reacted to awilliams74 in Anti Inflammatories   
    Neuroprotek (mast cell stabilizer/anti inflammatory) - would love to know if anyone found a cheaper comparable alternative?
  15. Like
    emst reacted to dasu in Anti Inflammatories   
    We are/were using enhansa and quercetin for our two. For my son we switched to krill oil as he is sensitive to sulfur. We serve up a lot of garlic both raw and cooked. We are planning to introduce cinnamon, ginger and cloves as well.
  16. Like
    emst got a reaction from mmiglio in help with medication   
    I'd have the doc give her a good week or 2 weeks on zithro even a double dose of zithro before moving on to chasing parasites. A lot of kids it's either Zithro or Augmentin. A small number take both.
    Also high dose inositol protocol might be of benefit esp. for those feelings of 'afraid all the time" poor kid we have been there
    google inositol in all the acn forums to see the range of experiences
  17. Like
    emst got a reaction from JenniferG in Biome Restoration...Helminths   
    Just jumping on - jenniferg, so happy to see your recounted experience. Ours is very similar though our kids are older and started at 30, ds is at 60 though his older sister is staying at 30 so far they had a huge run of improvement to date. Just did bloodwork on Monday. Will see if any numbers have improved. QUESTION DS has a virus and wicked (pandas) post viral OCD which does not seem as bad as its been in the past but its still an issue. Thoughts/experiences? Thanks!
  18. Like
    emst reacted to frikfrak in Biome Restoration...Helminths   
    Glad to hear things are going well.
    Our doc also wants us to do this for our DS 24. Still haven't decided what to do yet.
    We also have been approved for 1 IVIG so far....thinking of going with the IVIG because I too can not get over the ick factor and we have treated for parasites several times.
    Heard this was the poor man's IVIG but if its life-long then how is that inexpensive.
    Wouldn't IVIG be better if offered?
    Doesn't both do the same thing?
  19. Like
    emst reacted to JenniferG in Biome Restoration...Helminths   
    It is a parasite that used to live in us before we "cleaned up". It doesn't attach and grow and live in you. It lasts 2-3 weeks.....which is why you need to dose that often. I don't believe it is something you end/stop. From what I was told, it's a life long thing. TSO (pig whipworm) is VERY expensive. For a bit, I didn't understand why everyone was saying it was so expensive and I was paying $100 for 4 doses (with shipping from England). It is because we are doing HDC (larvae of a rodent tapeworm found in beetles). I know, I gag everytime I read it or say it. It is a clear liquid. You see NOTHING. It needs to be taken with a fat. So, I give it in a small amount of Chocolate Almond Milk. Honestly, you get to the point where you have tried EVERYTHING. and it's working. It's doing exactly what she said it would do.....if it continues I plan on making a big stink about how well my kids are doing and how everyone should try it. Especially, if you have gut issues.
  20. Like
    emst reacted to nicklemama in Really Confused   
    That's a common story around here, asymptomatic but positive for strep. I do not believe it means carrier. Your child isn't truly asymptomatic. The tics are your child's symptoms.
  21. Like
    emst reacted to JenniferG in Westchester County, NY Recommendations   
    I agree with Hopeny. Dr. Szackas is amazing.
  22. Like
    emst reacted to Hopeny in Westchester County, NY Recommendations   
    I live in Westchester county too. I would highly recommend dr nancy O'Hara in Wilton, ct. She works closely with dr b, and is not too far away about 30 minutes for me. She covers pans and immune illnesses. If your friend would like to speak by phone she can pm me. My pediatric group is open to pans/pandas and is in white plains.
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