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Everything posted by qannie47

  1. How long his symptoms last I would think will depend on how much inflammation is going on in his brain. I think he got hit 3 ways: 1)Stress from the start of school 2)Exposure which will of course turn on the immune system 3)Tooth loss The gluten/dairy is an IGG intolerance. So, unless he actually ingested some, I can't see how just being around it/exposure would be a problem. It is not like an IGE allergy. Depending on where your child/immune systems is with regards to maturation/healing from Pandas will determine how much the above factors will affect him and for how long.
  2. I would not vaccinate. Kids flare with vaccines, and if you do not have to.....I am so glad that your child is dong well. Regarding getting off abx. Well, I too have been tempted. However, I have seen the Panda's rear it's awful head too many times after I thought we were in the clear
  3. The good news is that Dr. K is not a money pit. He treated my son and we have been very happy. He does not run many tests. Very few. He is very pragmatic, and I have a lot of faith in him as a doctor. I think he is very smart and one of the best when it comes to Pandas. He is very strong with his opinions, and is not afraid to share them....I myself can appreciate that, but others may not. Good luck!
  4. chubbermommny, Curcumin supplements by 'douglas labs has been a game changer for me....great anti-inflammatory.
  5. I think that what happens is that it takes a bit of time for the antibodies to create enough inflammation in the brain before you see the result....flare. Also, I think that when my child is sick, he is actually too run down and that trumps his impulses.... My child rarely flares during illness...always when he is on the mend or completely recovered. This to me actually makes sense if all the theories about Pandas are correct.
  6. Never did the 23&Me, but Lipoic acid is a huge NO NO for my Pandas child....anxiety and huge vocal/tics appear within 24 hours..........
  7. I have been asked to speak to a group of student teachers. I have been granted a certain degree of poetic license. So, while I have my own thoughts about what I would like to say, I am curious about what the collective response would be if all of you were given 30 minutes of undivided attention to a group of future teachers. The professor whom invited me thinks it is important and valuable to hear a perspective from a parent whom has been through the educational system with children who have "special needs". I hope you all weigh in. I think it could be very telling to see what the collaborative responses are. Thanks! Q
  8. I read that when you introduce magnesium, it increases your calcium absorption, so you may not have to supplement....
  9. Cara, how were his copper levels? Plus his calcium, magnesium, and lithium?
  10. SSS: if you are casein free, where does yogurt fit in? The greek yogurt does not contain casein? Could casein be the trigger?
  11. Yes. Could absolutely be Pandas/Pans. Sounds like all the bells and whistles.
  12. riffleshell, your son sounds similar to my son. He responded very well to abx, dx'd early, but eventually abx stopped working. We moved on to IVIG, and then a tonsillectomy over the next year following dx. It sounds like abx is failing? Which can be typical. I would consider next step..Ivig. JPH, I looked for your profile, or more posts. I know you have had 30, but my computer could not pull them all up, so my feedback is limited. Only 2 weeks symptom free in 4 years? Did I read that right? Could you please qualify that? Only because while my son is doing well, he still has some residual symptoms. Like bed wetting and some ADHD, more so on the hyper side of the fence. You mention that he is doing well on homeopathic so I am wondering what that looks like. If I am going to respond from what I know, it seems to me that 2 weeks of symptom free says that there is more unearthing or work to be done...
  13. My son has done well for 7 months now. However, I do feel that there are residual...like short term memory not great, bed wetting, and can still excite easily but able to calm himself down. I would like to think pandas is gone forever...but I the research just does not support that. He is only 8...
  14. Blood work is all very helpful, and a must do....but please know that many Pandas children look perfectly normal on a piece of paper...ex: my son had strep for 6 weeks, verified by repeated rapid strep tests, and when ASO and Anti-Dnase B titer test was run 4 weeks later, he looked on paper as if he had never had strep! This is because some Pandas kids do not make antibodies...(part of the problem for some). My point: run the test....but if they come up clean, do not stop there. I would recommend 6 weeks of abx. It seems that the real proof is often in the "way a child reacts positively (symptom reduction) to abx (eradication of infection).
  15. I think all mental illness needs to be looked thru an autoimmune set of lenses before a diagnosis/treatment plan is considered..That is one of my big take aways from the last 2 years.... I cant believe with all the information that we as parents can access over the internet, cited by respectable sources, that things like autoimmune root causes, food allergies, a methylation panel, lyme infestations are not even considered by the medical community. UGH That being said, my own brother, whom possesses a very high IQ, HAS NOT DONE ONE THING THAT I HAVE SUGGESTED FOR HIS 21 YEAR OLD SON WHOM IS DX'D WITH BI-POLAR AND IS SO OVER MEDICATED THAT HE IS A ZOMBIE....has failed to read one article, or take one suggestion that I have made seriously....
  16. ugh.....sorry. Mine was a screamer...bird calls....I considered ear plugs. Ones that did not completely tune our noise, but softened it....never got around to trying it though.
  17. We are Dairy, gluten and egg free. I would say that I started noticing changes within one week and definitely big changes by week 2. I would suggest the diet to anybody whom is experiencing behavior issues.... FYI: sometimes a child can have issues and it does not show up on lab work for some reason. The best way is to take the plunge. Give it 2 weeks and you will know. I have my Pandas child on the same diet for example. I have not noticed any changes in him except maybe improved reading...That being said, my Pandas kid was in pretty good shape when I started this. Although, there is always room for improvement.
  18. All good questions pr40. I plan to speak with our peds doc since he has always given good advice. My kids are in a therapy camp run by a group of psychologist so I will speak with them as well. I will share anything I learn...
  19. Dr. Greenblatt was great. His initial dx for my son was this: 1)Anger/Irritability (not ODD) as a result from food allergies: Dairy (biggest culprit), Gluten & Eggs. All came back positive on IGG test. 2)ADHD: Possibly co-morbid to food allergies: To be determined over how he does over next 3 months. (on a wait and see because a) history on husbands side of the family and most of my sons labs came back pretty clean, with the exception of low on lithium, calcium and magnesium. (big shocker) 3) Possible Learning disabilities: mainly because school/learning has been SUCH a challenge. He explained that WE MUST have him tested, because diet change and supplements can't fix a learning disability, and even if the diet is helping immensely with behaviors and adhd symptoms, a LD will cause him so much inner turmoil, it will negate any strides we make with diet, etc... Regime to start: Vit C (my son has none in his body apparently from food allergy), Calm 1x day & Liquid Lithium (not psych med form) 1/2 dropper 1x day with dinner. He is doing more testing to dig deeper, a dna Genecept Assay, and another essential acid test. We will see how he does monthly. Forcast: With no LD, a very high chance that no psyche meds will be needed. With LD, 50% chance or slightly higher that no psyche meds will be needed. Update: My son is doing unbelievable. There is no anger, no opposition, no edge, no meaness. He is more patient, more cooperativesmiling almost all the time, and is able to work thru his frustrations and reading grade level material much better and without all the drama. (he still hates reading, but hey, he has had a 3 year negative relationship to books so who can blame the kid). Over all, the change is remarkable. Remarkable. If anybody has any questions about Greenblatt they can pm me.
  20. This is a very tricky area. Medicaid or not, Pandas is just now on the brink of being excepted by the medical community: translation: still some more time for insurance to embrace it. They will hold off as long as they can. What you need to find is a doc whom is willing to run tests and not code for Pandas. Many of the tests are very run of the mill along with treatments. You just have to make sure the right insurance codes are in placed. Any good doc knows this info and will take care of this.....
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