Mary M

Melanie, My dd came down with a cold a week ago...I can totally empathize. She had been improving on HD IVIg #2 and a steroid burst (for yet another autoimmune issue) and then the cold, vomiting on Sat, it is often more than any of us can bear. May we all find health for our children, Mary from Michigan

Tracie, I am so sorry. You recent PMs to me were so positive. Prayers and hugs and health to you! Mary from Michigan

I have some concerns about how to determine if a child has PANDAS if he or she has already been identified on the autism spectrum. How have any of you made the differentiation to ensure PANDAS treatment? Mary from Michigan

After all you have been through...even a moment of sleep is something about which to be filled with joy! Mary from Michigan

Emerson- Just wanted to say I'm sorry and hope your appointment on Monday provides some answers. Mary from Michigan

Wilma, My dd would go 48 hours without sleep and then sleep only 2-4 hours before another 36 hours of no sleep during her extreme exacerbation last year. It is mind-numbingly challenging to live this way..I know. But it is important to test the use of steroids. If the steroids are going to help it will take time. I, too, have felt like caving. Between the sleep deprivation and the behaviors we witness...it is incredible that we can even make it through a few hours at a time let alone days of a treatment course of any medication. All of these med protocols are designed for us to see if anything will help. I can only offer to keep focused, moment to moment. Nothing more. Follow the steroid burst protocol. And wait. It is painful, you are tired. Mary from Michigan

If I may quote you "angels in the darkness" This is indeed an excellent description of this group for me as well. I'm sorry your dd is struggling so much currently. This year has been difficult for my dd as well and for so many others that share this unique bond while perusing this forum and working towards finding healing for our children. Thank goodness we have all found one another. Mary M from Michigan

There were news reports about 3 weeks ago regarding "invasive strep" in Kalamazoo,MI and Colorado Springs, CO. The challenges so many of us are currently facing may be related to the strains of strep, the virulence of the bacteria that seems prevalent at the moment. Or maybe I'm trying to make a connection that just isn't there? Mary from Michigan

Beth Maloney, who wrote Saving Sammy, is an attorney on the east coast but she lived in California years ago. She may have some contacts for you.

We all need to hear of these kinds of successes! So happy for you! 6.5 weeks is a mighty long time (PANDAS parents and children must be very patient post IVIg---for me, it is so hard to be patient post IVIg)...but thankfully positive progress is being made for your ds and that means positive progress can be made for all. With hope for healing for all, Mary from Michigan

Thanks for sharing this. Mary from Michigan

My dd12 just had IVIg #2 with Dr K and he commented about the adults that are surfacing or re-surfacing. Have you contacted your PANDAS doc? Any other PANDAS docs? After so many years of healthy function I can not imagine how you must feel. We are all here for you! Mary from Michigan

So important for us all to hear this...and so wonderful that you are living it after living with so much! Mary from Michigan

My dd is now almost 13 and it is only during this current exacerbation that she has been able to verbalize her experiences. In her words, "I hide it all very well, no one has any idea how much is going on inside my head". She also explained that what we actually see is only a tiny fraction of what is really going on. Mary from Michigan

I would like to echo WORRIED DAD...I do try to check back as I believe that the support I received here, the knowledge I gained(in large part due to Buster's exhaustive research)and the encouragement I received when things were just as dismal as I ever thought life could become provided me with the strength and endurance required to find the correct diagnosis and treatment for my child and I want to be sure that that continues for anyone who ever stumbles upon this forum in the wee hours of the morning, with tears in their eyes and sorrow in their hearts as their child is lost to them yet sitting right beside them. Mary from Michigan

Mary - it does help, thank you- May I please ask: are you keeping her from school while she heals from #2 IVIG? Are you keeping on daily antibx. after your IVIG's? Thank you-----Sarah Yes, Sarah she has not attended school since IVIg. She has not attended school since Feb 28. Her symptoms prevented her from getting out of the house form that point forward. She talked about going to school this week but now she has 3 weeks of homework to catch up on and the stress of thinking about that...well, we all know how stress works with PANDAS! But, I am not concerned about her missing school. School is a petri dish of infectious material and I am glad to have her away from that at the moment. Re: abx-yes, she's on 875mg augmentin twice per day for 10 days then she will be on 275mg twice per day for a year. This is a different protocol than Dr K has used for others. We described to him that our dd demonstrates a decline in function as the hours get closer to the next abx dose. So he thought we should try spreading the dose out over the day and see what that does. Mary from Michigan

I would agree with others here that as the exacerbation becomes more intense, the posts increase and vice versa. I also give myself vacations from this forum as the information is daunting and as much as I'd like to help I also need to cleanse myself from the tragedy that is this disease so I can continue to be effective in dealing with it at home and in the community (web community too). But you also want to know what has worked: For us, dd had reached a point last year that was so intense that waiting any longer to see if abx alone would do it simply wasn't an option. Dd had IVIg June 2010, had five tough post IVIg weeks and then began to be able to live again, little by little. From that point forward she had marvelous successes (4 pointed her first semester of Middle School, had all ones in citizenship, went to activity nights/dances, laughed and sang and played her musical instruments). Then I witnessed symptoms beginning a week after school resumed after the holiday break in January. She had a confirmed illness (clinically looked like strep throat but tested neg) on Nov 18 and then a sinus infection Feb 1. On Feb 23 she told me her PANDAS were giving her a really hard time. We scheduled IVIg #2 and I am now sitting with her in a quiet house as her brain heals one more time. This time she has confirmed basal ganglia inflammation on a PET Scan, last time her cam K score was 166. I hope this helps... Mary from Michigan

Thank you...I needed that smile you just gave me! Mary from Michigan

Peggy, This is disturbing news. I am in Michigan where there was a recent news article about "invasive strep" in Kalamazoo and when my dh tried to locate the info he also found another article about "invasive strep" in Colorado Springs, CO. Is anyone else hearing about strep cases in their local areas that seem more potent? Our ped confirmed that in her practice they are seeing higher rates of strep than other years and cases that will not remit with regular abx treatment. Mary from Michigan

S&S, please know it took our dd 12 5 weeks before we saw improvement in the things you mention here... Hoping for healing for all, Mary from Michigan

We have BCBS MI and our policy covered a percentage of IVIG #1 last June 2010 and dh called yesterday and they said it would be covered (you know, the percentage they cover) again for IVIg #2 next week. But it is hit or miss with how each policy is written and thus requires a diligence that we, the consumer, often finds too challenging and complex to feel comfortable with any answer we might stumble upon while assessing the details. And, sadly, we have to figure this insurance business all out in the midst of trying to just make it through the day when our PANDAS children are less than functional. Mary from Michigan

You are not alone. I am "diagnosing" kids every day (you know under my breath in Target, watching the kids at gymnastics). I see it everywhere...and now my two teenage non-PANDAS daughters are doing the same thing. And Emerson diagnosed James Durbin from American Idol and then when I was looking stuff up on the internet about that I decided that Dan Ackroyd is probably a strong candidate for PANDAS...now if we could get a famous person ACTUALLY diagnosed then maybe we could move some really big PANDAS mountains...but I ramble. Thanks for this by the way. Things are pretty rough for us right now PANDAS-wise so I needed this little moment of silliness. Mary from Michigan

Peg- My prayers are with you... Mary from Michigan

My dd pulled the hair on her head. She would pull hardest during a rage. Her hair drove her crazy. She would pull on it and scream about it. She wanted it shaved off. She cut it herself with scissors. Her hair was a constant source of frustration. She would complain it had too much static. She made me buy product for it (that's the OCD) but nothing ever worked. She wouldn't even use what I bought. She would scream and pull with both fists full of hair. When the hair pulled out...it was as if no pain was even associated with it. I would have imagined that it hurt. Now I know people who pull their eyelashes or eyebrows when they are stressed from work. My dd's presentation seems quite different to me than that. Dr K said IVIg would take the trich away. He did not go into a discussion about it. There was a marvelous video on the web a while back of an interview with a Professor in Utah who was doing bone marow transplants on mice with trich. The bone marrow transplant "cured" the mice. He gave some excellent explanations. I'm so sorry. I wish there were answers. But the IVIg seems to really help for many. Mary from Michigan

After IVIg with Dr K (his standard protocol), our dd's trich stopped immediately and has not returned. She is currently experiencing an exacerbation but NO trich symptoms at all. IMHO, many of her symptoms are different than previous exacerbations (2)...but that's a story for another post. Mary from Michigan