qannie47
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Posts posted by qannie47
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I second your post. We had what we thought resudual pandas symptoms or a new flare with healing...so we decided to dig deeper for co morbid issues...
We found it! Vit b12 a multiple trace minerals vit, vit c, cal and mag and some lithium ortate. Wala! Saw my kid that i had not seen in 6 months within days.
Also BIG dairy intolerance played a big role.
He is currently 100%
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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.
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Thought I would share some info about some discoveries we made with regard to my Pandas DS recently. I decided to take him to the doc whom treated his twin/non/Pandas for mood/anger issues. (twin 100% symptom free 12 months and holding) Ds had a 2nd IVIG last March and we did not experience the same positive outcome as with the first one. Thinking that co-morbid issues could be in play, I wanted a second opinion. We flew to Boston, and saw Dr. Greenblatt. He is amazing.
Results:
0 traceable lithium
0 Vitamin C
Low levels B12
Low Zinc
Low White blood cell count
Low CaL/Mag
High Sodium
Low Serotontin levels indicated
Yeast Fine (interesting cause I have been remiss on pro-biotics for a year now)
High Dairy Intolerance issues
Dr. Greenblatts Interpretation:
All of the above deficiencies are interlinked and dependent upon one another so a domino effect is at play. Dairy issues part of the root cause>Undigested bacteria leaching into blood stream> antibodies making their way to Opiate Receptors in the Brain and causing Moon Lability/Anger/Aggression>diminishing absorptions of vit/minerals. 0 Lithium of course would be a player with same mood issues. Low White Blood cell count is probably the result of the low Zinc, which is needed to create white blood cells. High Sodium is linked to Zinc as well. Mood issues is a given with B12 deficiencies. All of the above are required for proper methlylation of Serotonin> either the mfg or the transporting to the brain.
He has seen similar profiles with Pandas kids. He feels that above issues are a combination of Genetcs/Pandas> the Genetics exacerbating the Pandas.
He is very optimistic about treating him, stating that he has had very high success with kids that have similar to my Ds's Profile. Says that B12/Lithium/Dairy are the biggest players here....Supplementing could yield benefits within a couple of days. I dare say......the child has not had a Tantrum since staring supplements.
Will report outcome
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I finally broke down and decided to try Conserta to help him with his hyper activity and focus symptoms. Voila. He is doing much better within one hour of the first dose. We are on day 6 and he has been consisitently better. School is reporting the same.
Dr. Swedo says a certain % of Pandas med's will help. It has so I am going with it.
Amen
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Hello, I have not been here for awhile for many good reasons. My Pandas child, age 9 1/2 had his first IVIG with great results 2 years ago. I had spent so much time here....it was nice to not have a reason to visit. He basically went straight into remission; one flare 3 months later then 18 months of bliss....a couple of popcorn moments but overall in great shape.
Then this past December over xmas break. Boom. Full onset symptoms. No Illness except a stomach flu 3 weeks prior and that is what I blame. I did not even blink an eye. I have been down this road and I Knew that I could weather the storm. Week after week past. I kept telling the school and myself that this too shall pass and reminded myself that this was inevitable. By the end of February I started getting concerned. It was lasting too long. So Dr. K and I put our heads together and made a decision. One more IVIG. We had a prior overturn for pro insurance so I was not concerned about coverage. Middle of March my ds had another IVIG much to my relief because the first one had such a great outcome.
UGH....
We are heading toward the 3 month mark and I am completely stymied. This flare has been completely different from the rest in the way of it's wax/waning component. My Ds did wax/wane his way through flares, but if he held a week of no symptoms, he was done..... This is not the case, both prior IVIG and post IVIG. Dr. K told me that this would be the last IVIG he needed and not to worry.
About 5 weeks ago, 5 weeks post IVIG and I have seen him turn a corner. How I qualify him is by is temper tantrums and motoric movements.
He is having several days of emotional issues plus motoric movements and then several days of calm. I just do not know what to think anymore.
He is not really fitting the profile because this flare is now going on for 5 months. He looks more Bi-polar then anything else. So erratic.
I am not defeated easily, but I am starting to wonder if we had moved past Pandas and now we have something else going on. It feels like Pandas, but yet it does not.
He has lost all his Math skills by the way and his peers now all thin he is weird. They are refusing to play with him because of his aggression and they are calling him dumb. He is slightly above average in IQ btw....try explaining that to a 9 year old whom cant seem to focus on anything right now.... He now hates school which was always in the past a positive place for him .
I am wondering if what I am dealing with is not a Pandas flare, (only because while he has some symptoms, his unique symptoms have died down), but a kid whom is dealing with social anxiety as a fallout form ongoing Pandas symptoms. He is typically very aggressive and regressive along with all the other traditional symptom.
Sorry for the long post......any thought appreciated....thinking CBT. I am wondering if this is Not Pandas this time around..
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We had a good response with it. we had a hair test done and he was low. 1/2 dropper for 6 months. No side effects. Helped focus and anxiety
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I vote no. My son flared after free for 18months. He was on abx. My point why chance it? And why does your child have to flare in order to prove something to doc!!!
That being said, summer months are probably best time for a break. Maybe supplement with turmeric for antiinflammatory. Fall time I would go back to abx though. My son has been in a flare since dec..ugh.So I have a strong reaction to compromising a good run. Good news he had second ivig six weeks ago and am seeing improvement. Dr k says his exp shows he has rarely had to do a third.
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You cant promise much with this disorder, but I can pretty much say that it is not the turmeric. Turmeric is an anti-inflammatory. What your are more likely seeing is the wax/waning signature that comes with this disorder. I would not pull back on the turmeric. I myself have used it. I have chronic shoulde/back pain. The turmeric works just as well, if not better, then 4 extra strength Motrin. That says volumes for it's anti-inflammatory benefits.
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While I feel that I have many answers as well as success in helping my twins: Twin A Pandas Twin B Food Intolerance, I still search. It is just in my nature. I am not one to lament much...well there is the Pandas and whom does not lament with Pandas. That being said, if I had one thought that over the years that I keep coming back to it is Ambien.
I took it during the last 10 weeks of pregnancy. I was hospitalized with high blood pressure and intense abdominal pain that caused huge sleep issues. Nobody had an explanation for my abdominal pain. Well, I think they thought I was just a princess. I am not a princess.
Anyway, during those 10 weeks I kept asking, "are you sure that it is okay to take ambien?". I was told repeatedly," yes, it does not cross the placenta." About once a year I am prompted to repeat a search. Of course, my fears have been realized. Yes, it does cross the placenta. However, I cant seem to find any hard evidence long term damage to a child in-utero.
Anyway, I digress again. I am wondering if any of you in this forum used Ambien during pregnancy.
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Yes, he does know his stuff and he can be down right rude. I have also called him on it. He did not hold that against me.
Overall, I have been very happy with him. I think what happens with him is that as a researcher he has a bigger picture of Pandas that we do not plus the fact that he is not the parent so the emotional side is a bit lost on him..... -
I suggest emailing him all those things. I did that before our first visit and I felt it made that first visit more productive.
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I would go with the steroid if they are offering it. Also, our doc suggests an increase of abx prior a tooth extraction. My son had anesthesia and had no unusual reaction. I never heard that one, but that does not mean it does not happen....
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IVIG can take a year to do it's magic, however, you should see what is considered a transformation with few symptoms 4-12 week post. That being said, it is highly likely that your kids will still have flares. Flares ranging from a day or even a handful of weeks. The idea is that over time, the flares are less intense and the window between gets longer. My son had a HUGE 4 week flare about 3 months after IVIG and then nothing for 1 1/2 years. Steroids are not an answer. They are a bandage. They are typically a diagnostic tool showing the relationship between the symptoms and the autoimmune system/inflamation. Steroids shut down the immune system and bring about rapid reduction in inflammation. When you stop them however, the symptoms comes back very quickly. Are they on an increased dose of abx? If not, they should be.
My son just had a 2nd IVIG this week because after 1 1/2 years of doing well, after the flu, he flared for 8 weeks and noting worked. Dr. K says that this should do the trick and that only 1% of Pandas kids need a 3rd.
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Thanks PR! My nephew has been dx with bi-polar and I have been spoon feeding his dad these kinds of research article...I will forward this to him as well.
My ds did have blood drawn looking for these antibodies but none were found.
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We were not instructed to use Benedryl or Tylenol/motrin after IVIG. We did continue with a prophylactic dose of abx however.
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ditto to mommybee. Steroids is often used as a tool to diagnose pandas/pans because they turn off the immune system. So traditionally, if steroids relieve symptoms, the symptoms are not auto-immune based...
However, so many of the Lyme people report adverse reactions to steroids...i would ck that out.
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I think there must be something to the time of year....perhaps the constant exposure if not actually sick themselves, but it seems that everybodies child whom is prone to these kinds of problems has simultaneously fallen off the apple cart.
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Hello folks. My pandas son, age 9 just completed a psychological eval. The good news is that over all he did pretty well. However, during testing, it was apparent that anytime a task required the sole use of Auditory Processing , he bombed.
Examiner wants us to see an Audiologist.
Question: Is there any real treatment for this? My concern is putting him through another battery of test, only to find out what we already know....He has just been through so much.
I am trying to be careful about putting him through any unneccesary testing.
Any insight would be extremely helpful.
Thanks, Q
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Which oils did you give? I respect that you are not the exprert, but all of us on this forum would greatly appreciate the specific oils that you gave. Thanks!
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My guy is 9. I spoke with the guy whom is flooding the internet with testimonies....My own personal take was that his story was too good to be true. When I asked him some harder questions, he got angry and defensive....That being said, I do not have any personal exprience witn essential oils so I can not weigh in.
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We are about 1 1/2 years clean from a major flare. My ds9 had the stomach flu in the beginning of Dec. Two weeks later....IT'S BACK. We are still symptomatic.
I missed it initially because A) It on the mild side and I thought perhaps he was bored/pent up energy over xmas break.
This time around, it is not 24/7: another reason I thought it was just a flukey phase.I realized that it was truly a flare when the mouth tics appeared and school reported same behaviors at school. His main symptom is mood/anger/fixation/unreasonable
We are about 5 weeks into this, we finished abx about 5 days ago and I have not seen much improvement.
I am getting worried.
I had hoped the worst was behind us.........
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Applause Applause!!! Well said. I am also so glad to hear that your child is doing better!!!
Overall, I have been very happy with him. I think what happens with him is that as a researcher he has a bigger picture of Pandas that we do not plus the fact that he is not the parent so the emotional side is a bit lost on him.....
This time around, it is not 24/7: another reason I thought it was just a flukey phase.
Co-Morbid Discoveries with Pandas DS
in PANS / PANDAS (Lyme included)
Posted
Looking good folks...looking good! No anger. No opposition. Calm. Emotionally Regulated. Happy...the child is happy.
It feels right too...if that makes any sense.?