3boysmom

Lyme tests?

Good luck and keep us posted.

We started with. "PANDAS" neurologist and she confirmed the diagnosis and added sydenham's cohrea. I felt that a neuro. was a good place to start, so they could rule out any other thing (like a brain tumor) or any other brain thing that may have been missed. Once we understood that we were dealing with an autoimune illness, we decided to find an imunologist that deals with PANDAS.....unfortunatly, no help here in Texas. (at least not 2 years ago). FYI....if you search old posts you will find MANY of our children diagnosed incorrectly because PANDAS was not known enough to suggest. So, bi-polar, toretts, many other things, BUT Aspergers, PDD-NOS, & autism in general are one of the bigger diagnosis to throw this under. Our son was diagnosed Aspergers, but with treatment for PANDAS, no longer has any characteristics.

What country are you in? What state?

You asked if you should do anything about your other child.... If you are suspecting things, then possibly test her titers and ask for longer doses of antibiotics when she does get sick. My Personal OPINION....I will not be vaccinating or flu shots any time soon (if ever). If you have a PANDAS doctor that you see.... Ask their opinion on how to prevent this with your other child. One other thing, it can be very hard for me to NOT see "everything" as PANDAS these days. Even half the kids at Walmart , school, or wherever look PANDAS to me. So be careful, it can be a fine balance between jumping to conclusions and lingering in denial. Blessings and prayers

Didn't have time to post earlier, but after our PANDAS onset with one son and then the PANDAS doctor pointing out the sibling connection and issues with our other boys that we did not know were signs of PANDAS, we were told to test them all. Well the other 2 had very high ASO & anti D nase titers and all 3 did the Cunninham test with results in the PANDAS range. Found that one childs cronic sinus issues were reallly strep in his sinus cavities. All 3 are on antibiotics and the issues with the milder 2 have mostly been resolved. The oldest improved on antibiotics but did not maintain....went onto IVIG.

I agree that April is too far away and a lot can happen in the winter months.

He said that if we had gotten help right away and not been sent down the wrong path for so long, that 1 IVIG may have been all our ds would need. He said that in his experience, kids with the level of illness and the length of time we had seen issues, that our ds would probably need at least 3. So we did our 3 and with each IVIG we saw issues decreasing. Now we wait and see, but we are scheduled for #4 in Jan just in case, but may not need it. Each child is different and it depends on what is going on.

All 3 of our boys (9,10, 11) were sick together without any signs that it could be strep. All 3 began issues around the same time but we still didn't make a connection because they each "presented" very differently. PANDAS doctor told us that 70% of her patients are sibblings. So she is the one that enlightened us on the 2 younger ones and possibly stopped the "train wreck" for them.

Don't worry, Dr B asks for all those tests to be run and he had us run our boys' Lyme tests through Igenex Lab. His office wlll set you up with all the lab orders. Many families with PANDAS can make some family conection to that thyroid illness, MS, and Lupus.

Do not have time to post, but did you happen to have his strep titers tests run? He sounds absolutly PANDAS and that would explain why the SSRIs don't help. Look at this as a good thing, because with help and a good doctor like Dr. B....you have such hope of your child improving after these 3 long years! Many of us have gone down the wrong path for a long while. Our son was diagnosed Aspergers, years ago and now at 11 after stopping Prozac and beginning Antibiotics and treatment from Dr. B, he has NO signs of autism. I am actually excited for you to get the correct help and have the newfound hope! Prayers your way! Keep us posted.

Prayers your way....you will get answers and things WILL get better! Be strong...fall apart later... then get yoursel up again. Things will get better, it takes time and treatment, but improvement will come. Blessings!

Hey, we were there last week for our 3rd IVIG with Dr B! Flew in late Sun. Night (iVIG on Mon & Tues.). Stayed 3 nights at the Double Tree & flew home Wed. Just wanted to mention that you can walk to the Cosco next door and buy a huge pizza for $10. and it is good. You don't need to be a member...go into Cosco and ask for a visitor's pass & they let you buy from the food counter and the pharmacy without membership. We got it "to go". Also if you get a room at The Double Tree without a refrigorator, ask and they will bring you one to your room. We went by Shop Rite and put juice and breakfast items in it. Not just to save money, but also for convenience and because it isn't always that easy getting out with your child when they are going through this. Hope this helps! Linda

In our case, our ds had his T&A surgery a few years before the strep triggered PANDAS episode.

Please take a look into Sydenham's Chorea. Dr. L. confirmed PANDAS in our son but because of some of the movements you are describing she also said he had S. C. At the A&M symposium, Dr. Swedo said that if you have the Sydenham's Chorea diagnosis, that it is much easier to get treatment because this is a known and recognized illness. Maybe this is an option you can explore, however I do not know you story as I have not been posting lately. Good luck! Linda

Hi nmom! We are at the hotel after our IVIG treatment at Dr. B's. I told the nurses that my friend would be here in december, so they know you are coming. They are so sweet and much more accessible than our other PANDAS doctor.

Ditto! Wish we could have been there to help represent the many families dealing with this in Texas. Great job, thanks!

We went to IVIG after 21 months of Augmentine XR 1000 x2. He is 110 pounds and has not had any complications thus far. He is still on that same dose currently. Waiting on test results that Dr B ordered to monitor (I think...kidney and liver and???). We'll be at Dr B's again in 2 weeks.

My ds11 is on that dose of Augmentin XR. He was put on it almost 2 years ago by a different doctor. It was the medicine that brought him back from irrational and disfunctional but we then went to IVIG through Dr. B because we hit a platue in improvement. Blessings Linda

Hey jag.... All this time on here and I never knew that you ALSO taught elem. Sp. Ed.! What state? I'm in Tx. KingJ....don't foget to take probiotics!

My latest post was to Bronx mom.....I forgot to state that. Also, I have been told that about stimulants as well. That is why I am interested in Srattera. Linda

Thank you for your answers. Our son is almost 12, 100 pounds, and is in 6th grade. What grade is your son in? I think we will wait a bit longer as we are flying to CT for his 3rd IVIG in November. Also we are struggling to clear mycoplasma right now. Blessings Linda

Please tell me more about the stratera. Dr. L. Did not want ds on any attention meds that were stimulants (may increase tics...) also may increase his ability to focus, but the focus could be on the OCD thoughts and not the teacher. Dr. B doesn't want us to try any attention meds yet because he wants us to manipulate one thing at a time and since we did IVIG, he wants us to observe the results of that first. I am keeping the idea of Stretera in my back pocket. What do you notice? What improvements have you seen? What is your child reporting to you about it? Thank you Linda

Please tell me more about the stratera. Dr. L. Did not want ds on ant attention meds that were stimulants (may increase tics...) also may increase his ability to focus, but the focus could be on the OCD thoughts and not the teacher. Dr. B doesn't want us to try any attention meds yet because he wants us to manipulate one thing at a time and since we did IVIG, he wants us to observe the results of that first. I am keeping the idea of Stretera in my back pocket. What do you notice? What improvements have you seen? What is your child reporting to you about it? Thank you Linda

All 3 boys negative on all igenix Lyme tests, our oldest (ds11) tested positive for mycoplasma and we have been trying to clear that, but it is being stubbern!