mompaisley

Yes, Dr. T says there is a connection between EDS, POTS and PANDAS. I have Hypermobile, my hubby and son have Classical. My daughter has PANS. Would love to see Dr. T figure this all out. What a mystery!!!

Yes, Dr. T says there is a connection between EDS, POTS and PANDAS. I have Hypermobile, my hubby and son have Classical. My daughter has PANS. Would love to see Dr. T figure this all out. What a mystery!!!

Yes, Dr. T says there is a connection between EDS, POTS and PANDAS. I have Hypermobile, my hubby and son have Classical. My daughter has PANS. Would love to see Dr. T figure this all out. What a mystery!!!

Had a great phone consultation with Campbell's PANDAS doctor. I am the strep carrier, so I am starting on antibiotics immediately. Campbell may be the first documented case of PANDAS initiated by Coxsackie Virus B. She starts on Valtrex tomorrow. Otherwise, everyone else is good (we were all blood tested). Really grateful for Dr. Trifiletti.

Wow! Really great article to show friends, family members and even doctors?! Clinical Psychologist describes how she came to believe in PANDAS.

PANDAS affects the area of the brain that handles this. Often kids will feel a frequent need to "go" or no need at all. Or they will have bowel incontinence. This is a symptom of PANDAS which can come and go. My daughter is incontinent right now. In fact, that was the first symptom. I thought she had a UTI. She didn't.

Thanks for your responses. I am still going to try it, if my friends will give us some. Otherwise, we will try the Camel's milk.

I have been reading about Camel's milk, and how some people think it is the "poor man's IVIG", because it provides immunoglobulins, hopefully resetting the immune system, similar to IVIG treatment. That got me wondering if breastmilk would work in a similar way. I have read the thread about whether or not your PANDAS child was breast fed. But I am wondering if anyone has tried using breast milk to treat PANDAS? I have asked a couple of ladies I know who are currently nursing their babies whether I could get some of their breastmilk. Haven't heard back yet. I am thinking about making fruit smoothies for my daughter with it. I know in the old days, people recognized the healing capabilities of breastmilk. Am interested in your thoughts.

MissMom, I am wondering how you treated for warts? Some of the pads might be salicylic acid, which is similar to aspirin. I am wondering if just enough gets into the system to less the brain inflammation, and get rid of the tics? Just guessing. No warts in my house, but a foster child I had for a while, whom I suspect of having PANDAS (he has been diagnosed with Tourette's) had warts when he lived with us for a while. Hmmmm. . . .

Dawn, I wish I could advise you on the traffic - I don't live in that area - two hours away. But every time I have driven in New Jersey, the traffic has been awful. I hope someone local can give you better info.

I had another thought. New Jersey traffic is notoriously bad. Just hope your husband and son are prepared for what could be a very long drive from the airport. Perhaps knowing this in advance will help them plan a bit better.

Dr. T does not have a wait, and he can do phone consults.

I made up a chart on Excel, comparing plans and guess-timating our doctors visits, procedures and meds. It's still a gamble, but you might get a better sense comparing the plans in an actual possible scenario.

Where does one buy Enhansa?

Give Dr. T a call. He would want to know if things are not getting better, and he may change things.

We just saw Dr. T for the first time last Friday. He's a little kooky, but in a good way. The receptionist was very nice. She and Dr. T were both very warm and kind. We definitely felt welcomed. The place is okay - not the nicest or the most professional office. But not all sterile and cold feeling either. They offered for my kids to play on the computer. There was also a TV and coloring table and toys. It's a good set up for children. I was grateful because I brought all three of my kids with, and they had to wait a long time while I met with Dr. T. They saw me right away - no waiting. We were the only people there. Dr. T took a long time talking with me, and then saw my daughter. We just sat in his office. I felt the whole thing went really well, and I was very encouraged. We just got our bloodwork done, so we don't have the results yet. You are further along than we are with that. He did change her antibiotics, and I am seeing amazing results already. His office is upstairs, so you can drive around the back of the building and park there. There isn't really a sign on the door, and we were a bit confused as to whether or not we had the right place. There is a large strip mall across the street, and we were able to go there and do a little shopping before and after. The kids liked that, as we live in a really rural area where there aren't a lot of shops. My bottom line impression is that Dr. T is a brilliant man who cares deeply for PANDAS kids and their families. I feel that we are in good hands with him. I hope your visit goes well, and that you will have a good path forward. Will definitely keep all of you in prayer.

Thank you, everyone, for the great information. I feel so overwhelmed. But grateful to have a place to go and people who understand! Excited for our appointment with Dr. T tomorrow!

I am emailing various probiotic makers to let them know about PANDAS and to suggest that they make a gluten free/strep free probiotic, preferably chewable - and asking them to learn about PANDAS and let their customers know about it via their website and catalogs. If more of us do this, we can encourage them to make a PANDAS specific product - and get the word out about PANDAS in the process.

I have been looking for a good probiotic for my PANDAS girl. She's not great about swallowing pills (although she is learning). We ran out of the Garden of Life Primal Defense Ultra, and I was getting ready to order more, and I read the label. I was surprised to find that it contains barley grass, which may contain gluten! (and we are a gluten free family)! I can't believe that we have been taking this for years without knowing. That got me reading more labels as I search for a gluten free probiotic. And many have some form of streptococcus in them! Is this a problem with PANDAS? Is it a different enough strain to not trigger the immune system? Has anyone studied this? I hate to think that giving her probiotics could make her worse - but I don't want to be paranoid, either. I will ask Dr. T on Friday when we have our first appointment with him. But has anyone dealt with this? Thanks.

Mouth sores can also be caused by anemia. My daughter has thalassemia, and can't tolerate many abx or nsaids because they make her anemic. We were desperate last weekend, so I tried some ibuprofen. By the second day, she had mouth sores and a bloody nose - all signs of anemia. I could imagine long term antibiotics creating poor absorption of nutrients, leading to anemia.

Homeschooling is perfectly legal in all 50 states. It is a parent's right to homeschool, if they want and how they want. However, individual states do have different requirements. We have always homeschooled our three kids, now 12, 9 and 6 yo. I have used various curriculum, and done different approaches. Sometimes, I have been very ill. Other times, one or more of the kids have been ill (like now when we are dealing with PANDAS with our middle dd). And, thankfully, sometimes we've all been well. My point is that homeschooling works because the parent gets to do what is right for their family and for their child at that time. No school, teacher or administrator knows better than you do what is good for your child. Please understand, I do not think that homeschooling is the only way. However, I do think that a parent who wants to homeschool their child, for whatever reason, is probably right about it being best for them. Please do stand your ground and don't let well-meaning but ignorant "experts" convince you that you are not able to teach your child. Children learn! They love to learn! You can do it. You will, in time, figure out what works best for you and your child. Also, please do get legal support. There are many groups, ** who for about $100/year will protect you legally in case the school district, or anyone else, tries to give you a hard time. Know your parental rights, and use them.