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Another PANDAS case


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Hello--

 

Our daughter was diagnosed with PANDAS in early January, and as you all know from experience it has been a traumatic few months for her and the rest of our family. We had little luck with conventional doctors (who offered SSRIs but little else), but I found this forum (I have read it often, but never posted before today--you are the best source of information on PANDAS out there, so thank you), several excellent naturopaths, and a great deal of information online and in various books on autoimmune disorders, OCD, and autism spectrum conditions that have helped with her healing.

 

After two and a half months, our daughter has shown remarkable improvements, despite several difficult setbacks. She was treated for the strep in January and symptoms abated. They returned with a vengeance, and a second round of amoxicillin didn't help. We have since treated her using natural means--mainly focused on diet. We know future setbacks are possible with bacterial and viral infections, but right now she is doing remarkably well--almost back to her old exuberant self. She never had tics (except "piano playing" with the active strep infection), but her OCD was extreme (handwashing until her skin was raw), and her mood swings intense. Now she washes her hands only when she needs to (I even have to remind her to do so sometimes--I never thought that would make me so happy!) and is pretty calm and happy most of the time, although she seems more tense to us than she was before the explosions of symptoms in January, and there are some lingering OCD issues (she has a phobia about the bottoms of people's shoes).

 

If it is of help to others, I wanted to share what her path to recovery included: (1) blood and urine testing to reveal gut dysbiosis, food sensitivities, and vitamin/other deficiencies—sensitivities to wheat, dairy, and peanuts; low B12 levels; high oxidative stress; (2) Removing offending foods; (3) “Pure” organic diet with NO refined sugar or artificial anything, lots of coconut oil and coconut milk, protein every four hours, fresh vegetables and vegetable juices, cilantro pesto, an apple a day (after week 6 only; for the first few weeks we eliminated natural sugars as well); (4) Supplements and herbs, including Inositol (for OCD), sublingual B12, probiotics, CoEnzymeQ10, Vitamin C, fish oil, evening primrose oil, Natural Calm Kids, Melissa herbs, Milk Thistle (for liver detox). We withdrew her and her brother from school, since it was flu season, and limited exposure to viruses until her immune system was strengthened (one viral exposure brought on severe symptoms). She has had two sessions of CBT. We think she will be ready to go back to school after spring break. We also plan to do metal detox, using PCA-rx, and a parasite cleanse. We hope to wean her off some of the supplements as her stomach heals.

 

It has been an extremely hard road for our formerly exuberant and fun-loving daughter (finding she is suddenly a "different person," then giving up school and her favorite foods and completely changing her diet), but she has done great, and we are so very proud of her. I hope this description of our experience is of help to someone. Please feel free to email me if you have questions.

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welcome Uma and thank you so much for sharing your duaghter's story with us

 

I was interested to read that you also give the coconut products ...we use the monolaurin (lauric acid) as a natural antibiotic, and the more I read about coconuts the more impressed I am!

 

all the best

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Hello Uma,

Thank you for the information, and I'm glad your daughter is doing well. Did you say how old she is? And did you mean she was diagnosed this PAST January or last year? I am wondering how you were able to find and implement all that in just a couple months, and she has responded to those changes in that time? Why did they not treat her with other antibiotics (just curious, I am not parent of PANDAS child). Does she only have ocd symptoms when exposed to strep or illness, or had this been going on for a while?

 

Thanks

Faith

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Hi Faith

the way I read UMa's post she meant this past January of 2008 and it sure doesnt surprise me that she saw improvements so quickly....altho my son doesnt have a PANDAS dx, we certainly saw dramatic positive results from dietary modifications and supps for him in just a few days and by a couple of months the improvement was nothing short of miraculous!

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Faith, my daughter is six. The diagnosis was January 2008, a few days after her extreme symptoms appeared. However, we noticed changes in her behavior before that, in the early fall, a week after her kindergarten shots (which included chickenpox and MMR). These included frequent urination, separation anxiety, and loss of reading and handwriting skills. We put them down to the adjustment to kindergarten (although she is so smart and outgoing and always loved preschool, we found this very odd). In December she had a sore throat, and we found out later that one of the kids in her class had scarlet fever. But our daughter's sore throat was pretty mild and cleared up with little intervention. It was after we returned from Christmas vacation that her symptoms suddenly exploded. It turns out everyone in the family had strep, although none of us had the usual symptoms.

 

I'm not sure why the doctor didn't suggest a different antibiotic after the amoxicillin. After I read more about it, I wondered why she didn't suggest Zithromycin.

 

My daughter's symptoms continued even after the strep infection was treated. Her symptoms were so bad we kept having her tested, thinking she must have strep, but tests came back negative for an active infection. She did have several viral infections, which probably exacerbated symptoms.

 

We are so pleased that the dietary changes worked relatively quickly. (It felt like a long time to us, but I understand that a lot of kids suffer far longer and with worse symptoms.) I think healing her stomach was the key, and the cleansing diet really did wonders. Although we have always eaten a mostly organic diet, she had been eating all her offending foods daily before the dietary changes. At times I felt that perhaps the "absolute" diet and supplement regimen was too traumatic for her, especially given all she had been through, but the relief it provided was worth it--even she thinks so now. We are also extremely lucky because I am self-employed and could continue to work even when the kids were home. In terms of how we were able to find and implement all this in a couple of months, I read everything I could get my hands on regarding PANDAS, OCD, vaccines, metal toxicity, ASD, etc. I must say that this forum was my most valuable resource. I read and read and found what worked for people, and I used their experiences as stepping stones to do my own research. For example, Chemar, I read your postings on Monolaurin, which is what inspired us to add a lot of coconut milk to our daughter's diet.

 

I pray my daughter continues to improve, and that all the children I've read about over the last couple of months on this site get better as well. Again, I can't emphasize enough how this forum and reading about others' experiences helped us.

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Welcome Uma,

 

I just wanted to say I'm so gald you posted your wonderful results with the diet. I truly do believe that is the key to keeping our kids off medication.

 

I don't want to hi-jack your thread on the coconut oil so I'll start one.

 

God Bless and I hope your dd continues to do well.

C.P.

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My son had seizures within 12 hours of reveiving a Hep B vaccine. He also has excema and tics along with some other behaviors. I recently read an article on a congressional hearing of a parent who lost their child (they believe to the hep B vaccine) He described the seizures my son experienced. He couldn't stress enough that parents have to make sure that these adverse reactions need to be reported to VAERS. He said he discovered his daughters reaction was not reported. After reading that article I checked with the hospital where my son was born and his reaction was not reported either. They (The Hospital staff/Pediatrician) are required by law to report the incident. The problem is if people don't start reporting these reactions they assume the vaccinations are safe and without consequence. There is nothing to document a correlation. I did call our Pediatrician and told him that he was required to report it. We told him we wanted documentation that the incident was reported.

 

Faith, my daughter is six. The diagnosis was January 2008, a few days after her extreme symptoms appeared. However, we noticed changes in her behavior before that, in the early fall, a week after her kindergarten shots (which included chickenpox and MMR). These included frequent urination, separation anxiety, and loss of reading and handwriting skills. We put them down to the adjustment to kindergarten (although she is so smart and outgoing and always loved preschool, we found this very odd). In December she had a sore throat, and we found out later that one of the kids in her class had scarlet fever. But our daughter's sore throat was pretty mild and cleared up with little intervention. It was after we returned from Christmas vacation that her symptoms suddenly exploded. It turns out everyone in the family had strep, although none of us had the usual symptoms.

 

I'm not sure why the doctor didn't suggest a different antibiotic after the amoxicillin. After I read more about it, I wondered why she didn't suggest Zithromycin.

 

My daughter's symptoms continued even after the strep infection was treated. Her symptoms were so bad we kept having her tested, thinking she must have strep, but tests came back negative for an active infection. She did have several viral infections, which probably exacerbated symptoms.

 

We are so pleased that the dietary changes worked relatively quickly. (It felt like a long time to us, but I understand that a lot of kids suffer far longer and with worse symptoms.) I think healing her stomach was the key, and the cleansing diet really did wonders. Although we have always eaten a mostly organic diet, she had been eating all her offending foods daily before the dietary changes. At times I felt that perhaps the "absolute" diet and supplement regimen was too traumatic for her, especially given all she had been through, but the relief it provided was worth it--even she thinks so now. We are also extremely lucky because I am self-employed and could continue to work even when the kids were home. In terms of how we were able to find and implement all this in a couple of months, I read everything I could get my hands on regarding PANDAS, OCD, vaccines, metal toxicity, ASD, etc. I must say that this forum was my most valuable resource. I read and read and found what worked for people, and I used their experiences as stepping stones to do my own research. For example, Chemar, I read your postings on Monolaurin, which is what inspired us to add a lot of coconut milk to our daughter's diet.

 

I pray my daughter continues to improve, and that all the children I've read about over the last couple of months on this site get better as well. Again, I can't emphasize enough how this forum and reading about others' experiences helped us.

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Ruby,

 

You have inspired me to call my ex-ped's office and demand that his reaction (within 48 hours of vaccination) be reported. I know the CDC will most likely discount our claims, but the numbers will speak for themselves.

 

He very convincingly assured me that it was mere coincidence and had nothing to do with the shot. I have often wondered if he really believes that. In either event I can't trust him.

 

What treatment protocol are you following for your son? You mentioned detox.

 

Thanks.

 

Tami

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