Iowadawn

Vickie & all you other parents with brave kids!! You are invited to my house to observe my 11 yo son when we say: "You lo--ve lemonade, Evan...Oh, the stuff floating on top?...Just close your eyes. It will make you have strong muscles!" "These are fruit chews laced with fish oil for your brain....Bleck??Bleck??! ...Yeah, you're right Evan, these expensive fruit chews do stink!" "Just bite down on these little thingiess, honey--it's kind of like aaaa...a Fruit Gusher--only fish oil disguised with lemon or strawberry gushes out in your mouth...Not so yum, I take it??" My boy HATED mashed potatoes as a baby & baby food!---I was never able to succeed at the "hide the ______". This kid spit out more amoxicillin (when it was bubblegum flavor) than he ever got down, I swear!! What do you suppose was his initial reactions when we started covertly, or otherwise, introducing something like FISH OIL--The colder the North Atlantic waters of origin for the fish--the cooler the reception in Iowa!! BUT: Give him a honkin' big 1000mg pill of fish oil today...down the hatch it proudly goes in a scoop of applesauce! That's our boy!! Darn proud of him. Just had to have a little fun with this one! I think it's getting too late. Dawn

Buster- I know of 5 cases right here in central Iowa. I think I'm the only one on the map right now. Dawn

I know Dr. K is big on Florastor as a probiotic, as are we. It is a "good yeast" --saccharomyces boulardii lyo -- not good bacteria, as most probiotics are. The abx will not kill this. It creates an environment that doesn't allow bad yeast to set up shop. This might be good in that the good bacteria still get hit by the abx, but the Florastor keeps the gut functioning. Just thinking outloud. Very interesting research. Dawn

Sptcmom- Repeat after me: "I have done the very best I can, over the years for our son, with the knowledge I have been afforded. I have always had my son's best interest at heart. No "woulda, coulda, shoulda's" I will only look forward towards getting him well." That's about as good a "couchlady" imitation as I can do! Much cheaper, too! Our son was definitely having issues by 22mo., also. Alphabet kid/parenting skill deficits! until a PANDAS dx at age 8 1/2.. He's 11 now and we are still working to get on top of his symptoms even after 2 IVIG's. We are planning on Lyme testing this week, too. blessings. Dawn

LisaMarie= Aaaa...they may make you believe that you would lose those services if you bring her home, but I am not so sure of that. May depend on the state. Someone else weigh in here. Does your state allow duel enrollment. School districts in Iowa LIKE to cooperate because they can see lots of $$$$ for a homeschool child. Would she qualify for an IEP? Would a doc be willing to sign off and say for now she should receive her schooling at home. Thinking outloud--not sure I'm of much help. Dawn

The trend to healing will often be bumpy, but the trend (even with setbacks) should be in a positive direction. (Big picture) If it appears that you eventually backslide & spiral, you need to ask yourself if there is a reason for this. Could there be strep in the family & is this making it difficult for him to heal. Mycoplasma pneumoniae, too? Did your son have an active infection at the time of the IVIG? We are on IVIG #2, still not knowing if this will be the last one. There were serious strep issues in our family and recently MP came to light in my son via blood test. We have him on Biaxin now. I have to believe this is helping. Dr. K is.....I honestly do not know where he stands, so you may have to call your own shots. That's all I'll say. Others should chime in. Dawn

I would be contacting him ASAP, explaining your situation, and asking if there would be anyway for him to see you while you were in Chicago. He wanted to see our dd15 and in less than a week we were in. Because he gets sooooo many emails, briefly remind him who you are, how bad, and where you are from. I bet he could see you. Dawn

Worried Dad- Your son/family gives us hope!!! There has to be PANDAS moms w/o husbands and PANDAS kids with absent fathers--I hate to think of how awful this would be. I hope other families were able to enjoy a QUIET/FUN meal with Dad like we were able to do today. Happy Father's Day to all the PANDAS dads!! Dawn

I feel your pain. Total empathy. Our 120# 11 yo son is too big for us to handle when he has flipped into raging. Flying hammers & swinging knives, bruises...you name it. Briefly...make sure you don't have other family members contributing to infection in the home. Mycoplasma pneumoniae...make sure that isn't te problem since the raging, aggressive violent behavior can be because of this. We are dealing with both of these situations. We are testing for tick-borne infectons this week, too. He is the best he has been in several months right now. Was just hopspitalized. We switched to Biaxin and had to get him on Geodon. I am inclined to think the Biaxin is a BIG help. Hope this helps. Dawn

Memom- I will PM you. We have BCBS, was in your exact situation. 24hrs after we went another route we were approved--not only for the last one we had, but for any others he needed until 1 year after the first one. Maybe I can help. Will try. Dawn

Boy, can I feel your pain. We feel our son has been dealing with this PANDAS thing for a good 7 years before we knew the ODD that we had been dealing with in the traditional behavior methods was not just ODD. Like Dr. K says: ODD, PDD, etc--these are just symptoms!! We know every tool in the book, but it still stands--if he is operating on all cylinders the techniques work. If he isn't it is very difficult. We have had to quit beating ourselves up over years of thinking our parenting skills were to blame. I thank God we have had the therapists we have and continue to have and continue to see. Like I tell my husband, even the worst kids with the worst set of parents most likely wouldn't scream the garbage at us or attack us the way our son has because he flips over losing the computer. Make the consequences clear & simple and know which ones you'll go to the mat on. It is a very delicate line we walk, but do not beat yourselves up. Someday the techniques will work. Dawn

Wornoutmom- Thoughts & prayers go your direction!! I am very interested in the mycoplasma pneumoniae component. What kind of blood results did you have?? DS11's most recent were IgM 1.89 & IgG 6.27 (.90 as the cutoff). The unsafe rages landed him in the hospital. THANK GOODNESS for the local doc, like yours, she has been "practicing" medicine for us. We have also had 2 IVIG's, but had never been able to get one of the PANDAS docs to put him on Biaxin. My gut said MP, and I asked our GP for it & she gave it. We have been told we can keep him on it. WE WILL. ANyway, what kind of results did you have? Our son hasn't had symptoms. A year ago the IgG was 3.89 and IgM neg. Just curious. Prayers & Good wishes!! Dawn

Our DS11 has had 2 IVIG's. Three weeks was about the point when the bad bumpy started to go into a more positive upward trend (with bumps). Take a deep breathe, hang on for a bit longer, and you should start seeing improvements. Dawn

Vickie & others- Have you thought of--at some strategic point in the month--hunting down the leaders of some of last month's winners that we helped and asking them to rally what troops they can to come to our assistance? Warrior Wishes comes to mind as one. Just a thought. Dawn

No coughing here! Not really ever. Myco doesn't have to present with the walking pneumonia like symptoms. I guess it doesn't need to present like anything!!! It is an insidious wall-less bacteria that has to hang out inside cells. From what I gather, and with the some of the infections he started having from 10 months of age, the cells from the lungs up can be shelter!! He hasn't had an infection to speak of like this for a long time. Somebody else can weigh in. I'm still at a bachelor's and it is in music!!!! Dawn

We saw improvement both times, only to see him spiral BUT there are improvements that have stuck. Choreiform mvt in fingers, tics, huge pupils so often. The huge emotional baggage has been what has gone & come again. We have had strep in the family and I have been getting more & more suspicious of the mycoplasma--we have been able to ferret out what can be attributed to what. I feel we keep getting more & more puzzle pieces added to our pile, but no one has given us a picture(s) to put them together. I know the explanation of symptoms is general, but yes, we saw improvement, some is still holding--which makes me believe there are at least two different things going on. Elizabeth & others have encouraged us to do lyme testing. I'm giving in after reading the Igenex website. My heart did a a ka-thunk when I read some of the symptoms listed & then I started googling. Jaw discomfort (from the site) and heel pain(when I googled) are two odd ones that jumped out. He has had a litany of odd symptoms, that in and of themselves, don't mean squat. Taken together after reading the site--Aaaaaaaa. Took a 2x4, Elizabeth & DeAnn, but I came around. Thanks for being persistant. Barring some setback, Evan should be out of the hospital tomorrow. Thanks all, for praying & caring. Dawn

Hi all! We all would be rich if we got paid for all the times our gut instinct was correct, wouldn't we? We all deserve doctorates--not even the "honorary" kind--the real thing!! Evan's (ds 11) is in the hospital right now. The day before he went in for behavior we could no longer safely deal with, I had our local GP switch Evan to Biaxin, my gut said mycoplasma. A year ago he had a Mycoplasma IgG of 3.9 and a IgM that was negative. Dr. K was aware of the raging/myco connection, but I could never get him to switch him to Biaxin with those results. Today...drumroll...IgM of 1.89 & IgG of 6.27 where >=.90 is positive. His strep antibodies dropped precipitously from 3 months ago to 188 & 440 The AntiDnaseB is down from 5440! Yes, that 0 is correct, for those who haven't followed our case. My strep antibody levels are 756 & >1360 (They are running them out now at Mayo).Looking like the same from 3 months ago!! The rest of the family's are not back yet. I asked to be put on Biaxin last week as well. There you have it, like so many of you, another puzzle piece. Just need the picture to know how to piece all our pieces together!! Dawn Evan had his second IVIG 9 weeks ago.

Thanks Vicki & the others behind the scene. The lists help immensely. I'm pretty computer "challenged", but even I can cut & paste! Maybe you have noticed the changes Pepsi put in place with the need to type the goofy words--guards against computers doing the voting. Plus, I noticed I haven't been able to go right down the list & vote w/o going to the project. Still- faster tan before. I made a plea again to my church family to vote and pray. We had to place our son in the hospital yesterday. We had exhausted our ability to keep everyone safe here at home. (yes, we are on IVIG #2!) I said that this would be a tangible way to care. I am a bit confused why when we help all of these groups out they jump up in the ratings, but we hover. Kind of confuses me. I am confident we will pull this off!!!!!! GO, (away really) PANDAS!!! We can do it for all our kids and families needlessly suffering. Dawn

We are the ones dr. K told to wait 2 mo post a month of abx. I begged a couple weeks ago to do the blood draws and his response was "unfortunately 2 months was the minimum to see a fall in titer levels." At that time we will assess if "bigger guns" are needed, he said. Honestly, I am thinking we will need bigger guns, w/o going into details. Let me know if it was 2 weeks!! Dawn

Worried Dad- Thanks for posting. Our family of 5 is (impatiently) waiting to queue up for blood draw to check titers after a month of zith in March. Dr. K said we had to wait 2 months after we ended the abx to run them. I can not wait. Evan's had a second IVIG & on Augmentin 875 bid. We will ask to keep him on this dose, though I think zith was better. I'll beg for that, first. I'll keep you posted on teh results of the blood draw. -Dawn

I would ditto using Firefox. We have had few problems. My husbands laptop is quite a bit faster than our regular computer, but Firefox has worked OK. Dawn

Maybe I have been out to lunch and I missed something & this all was discussed in an earlier post. The FAQ on the Pepsi site talks about Proxy Voting and how its use was unclear and starting June 1 they are clamping down on this. The "includes, but is not limited to..." clause pretty much covers all bases. This would seriously change strategy? Enlighten Kudos to Kelly & Vickie & whomever else really were in the trenches w/ this project!! Dawn

A question regarding PANDAS and others in the family/clearing the family. What can someone share of Dr. B's take & approach on this matter?? Dawn

Patti-- Never too late. Get to a PANDAS doc. Our son was most likely short of 2 when this all started. He is 11 now. He was dx'd at age 10. Forge ahead and get your son treatment he AND the family needs. It is very frightening. So many of us know that feeling of "losing" a child, a family to this awful disease. You have a good cry, say a prayer and keep fighting to get your son back. Best wishes & prayers. Dawn PM me if you would like.

Vickie- You made my day. I had to make the decision to cancel coming to the conference--the separation anxiety with my boy is way to high right now. He is post IVIG 5 weeks. It may well cost me a pretty penny to cancel my registration, but it would have cost me WAY more to go, and I couldn't do that to Evan or the family. I was so hoping to meet everyone. When I saw that there is a live stream---I was so excited. Do you know if there will be DVD's of the presentations made after the conference? Anyway, thanks for sharing this. Wishing I could make it. Dawn