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Everything posted by emst

  1. I'll use BOLD to answer your questions What do you guys think is going on with my daughter (and me) ? Could we have MTHFR or SIBO? PEOPLE CAN HAVE BOTH Do you think my daughter is experiencing permanent damage? How can I tell if so? PERMANENT DAMAGE DOESN'T SEEM LIKELY - ID THINK SHE IS STRUGGLING IF SHE IS MISSING NUTRIENTS Could she have PANDAS AND a B12 deficiency? YES Could it by Lyme or Bartonella or Candida? YES Adrenal fatigue? YES More than one of the above?! YES How can anyone diagnose us with a B12 deficiency if our B12 levels are normal and our Homocysteine levels are normal? NORMAL IS A SUBJECTIVE TERM SOMETIMES ESP W OUR KIDS __ AND IF YOUR DRS ARE NOT COOPERATIVE WHERE U LIVE YOU HAVE TO ASK WHY __ FOR EXAMPLE WHERE I LIVE WHEN OUR KIDS WERE DIAGNOSED * YEARS AGO NO DOCTOR IN NY W? WORK W PANDAS BUT OUR DR IN CT WOULD -- ASK A LOCAL PANDAS GROUP (LOCAL TO WHERE U LIVE) THEY CAN DIRECT U TO DOCTORS AS CAN GROUPS LIKE TACA AND NAA Methocolbumun form of B12 is what most people do -- IMO best to do it w a doctor some kids react really well as 2 of mine did but our other has different genetics and she responds terribly to b12 -if you try it on your own try tiny bits/drops and go slowly YOU NEED HELP -- HOPE OTHERS REACH OUT and hope you find a good doctor ASAP Best to you, Erin
  2. How are you treating? Might be time to switch it up pt increase the dose if you are on meds or implement rotation of herbs if you are using them.
  3. Hey -- so sorry. Been there x3 kids it stinks, worse. If I had to do it again i would ask people to help though I suppose you know that its hard to ask, and it gets harder the longer it goes. But there are more good people int the world then not and most are smart and kind and can take direction. Church groups, school groups, scouts - friends and neighbors. Be very specific so they cant fail Give it a shot. Sending Prayers your way, Erin
  4. I have heard of kids w Perianal Strep though the Dr who told me about it said that most doctors do not check for it. Only obstetricians check for it he said. It sounds like that's what is going on -- also thinking it could be yeast though time of year strep seems more obvious.
  5. Hi Jennopow It sounds like pandas flare. For yeast we do candex or candidase enzymes or both usually work up to 3 caps a day.empty stomach lots of water How is her diet? Unfortumately might be time to tighten up the diet consider GAPS or SCD, good videos on AUTISM ARI http://ariconference.com/
  6. Great advice above. Also consider the full moon is often a culprit or at least part of the problem in the sense that a weakened immune system leaves kids open to infection and parasites
  7. Bacteria in the nasal passages or sinuses, maybe strep -- need to treat
  8. 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.
  9. Been there! We are trialing Clonidine w good results.
  10. I think most doctors would have you test the individual ingredients. This product in particular has had a few version changes example removing shellfish -- if it were me I would see what the reactions were to the individual elements acknowledging that the elements were put together to wok synergistically -- it may take time, prob worth it though.
  11. Definitly look at TACA doctors list for SoCal https://www.tacanow.org/family-resources/medical/ http://www.generationrescue.org/recovery/find-a-physician/
  12. Our daughter was 11 at the time this came up in out house and was interested in the topic when it first came up though she was very secretive/independent about it which surprised me but she is the type who likes to be prepared so I should not have been surprised. She asked me to buy her a long list of products she thought she needed so I did that and just left a bag on her bed --included both tampons and pads several shapes and sizes though to date she has not tried a tampon she still has them in her drawer.. She had had the American Girl Book 'The Body Book for Girls' since she was very young and she told me that was all the info she needed. True enough - I left her to herself on this.
  13. We have used Nutramedix Samento, Babuna, Banderol each on different occasions, Nutramedix has interesting links esp. suggestions from Dr. Cowden that you might find interesting. Hope it helps.
  14. Maybe change helminths for a bit? We use biome restoration for the past year and 1/2 its helpful for me and 2 of our kids. Our benefits w this brand of helminths mainly gut and calming.
  15. Buhner is really ahead of everyone on this topic of Colonies/nasal. Literature is just now being published.
  16. My first guess would be inflammation post ivig, then infection -- no matter both are bad for you and him. Are you treating this? What are you using? Pls post, thanks, Erin
  17. Go with Drs O'Hara and Szakacs in Wilton CT -- just a little bit further drive. they are among the best in the country with these kids, hands down. Dr O'Hara likes Dr Bock, you could start with him if things are urgent and he has openings and then switch. Sometimes the wait for O'Hara and Szakacs is pretty long -- make an appointment anyway you wont regret it.
  18. What other calming strategies are you using or aware of? Other parents on this board or other boards please chime in. My immediate suggestion would be to ask Dr, K to prescribe calming sedation for the plane or your travel will be in jeopardy.The airline may ask you to get off the plane if he is not under control. Perhaps contact your airline for strategies such as a pre visit. As bad pre visit to the airline certainly justifies calming medication. If the doctor can not prescribe can a colleague of his prescribe?. A raging teen on a plane is very serious as is driving for that matter. You need help.
  19. we like the homeopathic calc carb which for people with sleep issues a protocol we use: first rinse your mouth and wait for half hour or so before beginning. Place 5 pellets under the tongue and let them dissolve slowly, if person can not fall asleep repeat 5 pellets under the tongue and let them dissolve slowly every hour for up to 5 hours. Our kids are 13 and 15 now. For us the first time we tried it we found that we gave '5 pellets 3 times' on the first night and second night and then fell asleep for most of the night after settling down. We use Boiron http://www.amazon.com/Boiron-Homeopathic-Medicine-Calcarea-Carbonica/dp/B005P0XWQY/ref=sr_1_1?ie=UTF8&qid=1450262858&sr=8-1&keywords=calcarea+carb On the 3rd night we gave 5 pellets 2 times and then fell asleep the rest of the night. After that we take 5 pellets 1 time and fall asleep. We can wake up and go to the bathroom and go back to bed and fall asleep without pellets. Exceptions -- harder time falling asleep around the full moon 4-5 days -- we sometimes have night waking at 2 or 3 a.m. and 5 pellets mid-night can help w some exceptions == 1 exception is hunger, give more time feeding before bed
  20. We use prescript assist http://www.prescript-assist.com/products/?gclid=CLu668vytckCFYn2HwodvtkFqg We have used probiotics for years. We find this one to be especially gentle yet quite effective. Our MAPS doctor reccomended it to us.
  21. Most Maps or dan doctors would probably answer that testing is unreliable and what you need to rely on is the clinical picture. The two things that come to mind maybe your child's not mounting enough antibody response to even show on a lab test and that's why its not showing or commonly doctors look at similar groups -- just for example if your child has a peanut allergy or sensitivity it would be reasonable to be cautious about other items in the nut family (just for example) you might want to consider items in the dairy family may be aggravating. Address the aggravation broadly. OCD symptoms in our experience are due to an aggravation, most often food and go pretty completely away or under cover when yje aggravation is removed. Consider SCD diet, get a clean slate.
  22. Rosario Trifiletti is your best bet. WNY not as progressive it could be though NY as a whole doctors that work for large practices generally are not allowed to discuss pandas w patients. We go wot independent practitioners.
  23. Yes, many problems go away w fever. FWIW We did years and years of interventions and nothing took inflammation down permanently like the SCD diet, hands down the best intervention. It's tough - so are you,
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