Iowadawn

Worried Dad- Your situation give me hope. We are still plugging away. Dawn

Wendy- Your response makes me feel better--The way you describe is similar to me--just not a full blown issue. Will monitor & keep drinking extra water and cranberry juice, as I am no worse--probably stopped it from snowballing. I am sorry, but I could crunch, crunch, crunch down a terra cotta pot (at least I could dip the pieces in ranch dressing!!) before I could stomach ingesting bentonite clay!! Maybe if I put it in a used parmesan container and eat lots of spaghetti!! Oh, I know another thing--minor gum or sore/irritated areas on the gums or side of the tongue pop up every so often & then leave. Nothing major. It's always on the left side. What is weird--probably coincidence--it is the side that the lower 1/2 of my lip has been 5%? numb since I had my wisdom teeth extracted 15 years ago. They swear the nerve was far enough away from the root to not have caused this problem (though I was warned of the possibility). I reached a point where it feels like the tail end of novacaine wearing off. Lately, it has felt more noticeable. Hmmm. Dawn

All you gals--I am on zith & ceftin for lyme treatment. It would seem by the symptoms that I am getting a UTI. Not something I have had much problem with over the years & on these abx??!! I have read that the bladder is a popular hangout for lyme--could I just be drawing out the Bb and now it is causing a problem? I am to start Flagyl (Sat, Sat). So what has been your experience or possible explanation. See about switching abx? Chugging cranberry juice/water for now. Thanks. Dawn

Yes, there is one in Elgin. Dabel, Pixiesmommy, and I go to him. He also has an office in Grinnell, IA. I will PM you. He has treated a number of autism/lyme kids with success is my understanding. Dawn

Momaine We are a PANDAS/Lyme family that is doing IVIG along with abx treatment for 12 ds. I'm rather sad & tired, too. The trend is positive, but I wish straighter & faster. We are all gradually jumping into lyme tx. PM any time. Dawn

High HHV6 here as well. Also myco & babesia. Ditto on clearing the babesia & bartonella ramping up w/ Evan. Today was the first time I have heard in--over 9 mo? that Evan mentioned his shins hurting. I know thAt goes w/ lyme. dawn

What dose is he starting at? What other meds is he on. dawn

I haven't read all the posts, but I get the general gist. Boy, can it be a fine tightrope to walk. And we have been on it for 10+ years (Now we know lyme,too). Emotional regulation, ability to use "braking" in behaving--when my boy is operating on all cylinders I am not called a piece of $%&%$#. WHen he is told that his time is nearly up he will say "OK", or politely barter for a little more time. He will apply the brakes when warned. Traditional techniques work. Carrots work; consequences work. Be a French fry sort of a HAppy meal and just about everything goes out the window, it seems. It can drive parents insane, and be a source of contention in a relationship. Pick your battles judiciously. I often stop and think how even the worst parented kid would not think of calling their family members awful names or threaten to kill whomever. Maybe there is one thing near & dear to your child. The computer for our son. Over 1 health safety property violation or 2 insults to M & D and the computer is done for the day. As he improves, we tighten it. If he is off the wall--we suspend it until we see better behavior. But, every kid and situation is so individual and some days it is "just get to the other end of the day-alive or sane. My conclusion is that PANDAS makes the whole behavior control thing so much more difficult. If we had stuff attached to our basal ganglia we would go wacko, too, at times. But once the line is drawn, stick to it. Always remember that the healing process is not an overnight, flip-the-switch thing. I really don't have a good answer. Dawn

So--how is the Tindamax doing for you? I think that will be the next thing for our boy. I am not sure about the GSE. Dawn

The acidity level of your stomach is somewhere around a 1---about like battery acid. Lemon juice shouldn't be too hard on it! Dawn

The LLMD we go to who has done some training under Dr. J has had tremendous success using IVIG as part of the lyme induced autism protocol. Dawn

My guess is that there are older kids on it. I will see Dr. Khosravi for Evan on the 25 of March and will ask this in passing. I was the one that sent the reporter to talk to him in the follow-up story b/c I knew the other doc was not the only person rxing it. dawn

OK, my tech-y husband is not able to get the links to copy, so for those interested this is where you will find the two Namenda stories. One is the original and then a follow-up. We almost were interviewed, but decided against it when they wanted to show our son. We see the young psychiatrist in the follow-up story. He has a much more balanced view of the drug. Google WHO-tv 13 news and look for "Miracle drug" or "Namenda". There are two different stories. If someone knows how to post the links, please do. I am clueless. Hope this is useful info. Dawn

Watch and I will send a link to a big 2 news story done here in central Iowa re Namenda. We have used it. Saw some good. Focus & eye contact. Autistic traits is what it is aimed at. I have to run, but I will try to have it on by evening's end. We had no known side effects. Namenda is an Alzheimer drug. We are not on it now. The only psych drug Evan is on is gabapentin. Dawn

My son's pee is reddish, he says. Very common side effect. I am not sure what is actually causing this, but it doesn't appear to be harmful. I think the liver needs closer monitoring. Rifampin is suppose to be very good at crossing the BBB. The doc added it to our mix with the appearance of bartonella scratches. Dawn

Sounds much like the appearance of the rashes that have begun showing up on my son's torso every two weeks (about). He is + for bartonella. There is a Dr. Jone's kids link posted on the lyme forum with lots of pics of these kinds of TBI rashes. There is a bartonella rash pic of this type of rash. Dawn

I have read that the pill form is not very effective. Too little of it makes it into your system. Remember, Mepron NEEDS fats to help with absorption. The plasma levels are seriously jeopardized when it is not taken with fatty foods. I am thinking I read to the tune of 50% reduction. The yellow temper paint look & consistency can be overwhelming for a kid. It is for me just to look at it!! The hospital Evan was in taught him how to take it in a syringe. We load it up & he puts it way back on the side of his mouth and pushes it in himself. Then chases it with something like milk or whatever it takes. Best wishes. Dawn

Our LLMD added Rifampin to help get the bartonella that we seem to have on the run now. He is begging to go to school ALL day tomorrow. It has been latter Sept since he has been in school this long. He has been going a bit more than a half day for several weeks. We'll give it a whirl. Dawn Oh--no itching rash.

My personal feeling is that we not speculate/try to guess/or give clues. I am just thankful that someone has been blessed with the means and conviction to do this for our children. It is one of those "don't need to know" things. I am grateful for this person's generosity. Dawn

What is Dr. K up to these days? Did he say anything about the number of tough cases ending up needing Lyme/TBI treatment? Just curious. We changed course after IVIG #2 when DS plateaued and spiraled a second time. Dawn

Yes, I snapped a picture--much to my son's disapproval!! More streaking was obvious today. The first time I saw this a couple weeks ago the streaks lasted a few days. He has been VERY irritable and anger/emotional rollercoaster yuck the last two weeks. Am talking to lyme doc tomorrow. Dawn

Hi All! There has been a lot of interest in how to raise awareness and money for PANDAS research. This idea just came to me via a CarePage update our pastor's family keeps for their 10yo dd who has been through cancer tx for Ewing sarcoma. She is hosting a party for THE specialty cooking utensil company and what she would have earned from the sales of the party--she can even get people to order from afar--she is donating the dollar amount to her favorite cancer research fund. The rep was so moved by this b/c she has twice been treated for cancer that she is donating her profits from the sales and her gift was free shipping, as well. This is cool. I am NOT a home party person, but this sound appealing. All you that are party people or reps for these type of home parties--what do you think or know? Just thought I would pass this along---something just under our noses, perhaps. Dawn

Just a little update on our PANDAS/TBI saga. We seem to have eliminated one bug. Check off babesia for our DS12. They ran blood tests right ahead of his last IVIG and the results were way w/n normal range. The doc likes to see eosiphilic cationic protein below 10 and it was a 3. He was on Mepron. I will say we have had no babesia-like symptoms since starting the Mepron last fall. One question about a bartonella rash. I think this is what is showing up on my son's back. A few very thin striated/streak, red marks. Typical for these to surface well into treatment. Is the "bug" being polled out, for lack of a better term? At first I thought it was a little "fingernail" self defense from a sister, but now I see a new batch and he really never runs around with his shirt off. We are moving in the right direction with bumps--that's all I'll say for now. Dawn

Curious on the dosage/frequency of IVIG per Dr. J. We are doing abx, etc. + IVIG. Our doc trained some with Dr. J. Iowadawn