Mayzoo

Check to make sure the abx and other meds you are using are not affected by iron consumption. A few abx should not be taken with iron supps. Iron can cause constipation, so you may need to add a stool softener in as well. A few iron supps come with a stool softener already in them. Here is a quick iron absorption article: http://www.anemia.org/patients/feature-articles/content.php?contentid=000316 Hope this brings some relief for you both!!

Sounds great. I hope his titers reflect an improvement! Thanks.

Here is a list of docs who specialize in PANDAS. I am unsure if they see adults or not, but you can call the ones closest to you to inquire. My limited understanding is yes, it can follow you into adulthood, most especially if it is not treated. http://pandasnetwork.org/resources/providers/

I am going to bring up Virastop with kiddo's immunologist on the 25th. My kiddo has high viral antibodies as well for coxsackie, HHV-6, EBV, and rubella. I will let you know what he says about it. I have read good things about it, but heck, if you look hard enough you can read good things about almost anything.

The autism and chiari are for my kiddo. I only posted the labs for trinitybella since she is on a MAC computer. The sleep and lyme are for trinitybella's kiddo though . Ironically, my kiddo's labs and her kiddo's labs are very similar, just different symptoms.

You are very welcome. I cut and paste a tutorial onto your other thread, but I have no idea if it works since I do not have a MAC. I hope it works out for ya!!

And the last one: ">

Trinitybella can hop on and ask specific questions she has, but here is her daughter's lab work: "> "> "> "> "> ">

Here is a breakdown of how to use photobucket (after you have made a screen shot and saved it in on your computer) as an alternative to tinypic which is not MAC compatible: Use Photobucket as your hosting site. Go to photobucket.com and register. You can select a name for an album. Click on Upload Images and Videos Select the picture you want from files, or desktop on your computer. Click Open - Next screen, you can give titles and descriptions to each picture.(Or you can bypass this by going directly to Save) Click Save To Post on the Forum from Photobucket Go to your album. Select the picture. Generate code. - Click on small square under pic Scroll down to bottom of page - choose action Generate link codes. Then choose the IMG for bulletin boards & forums. Copy the Link ( it may say copy is on your clipboard, which means it is copied and ready to paste) Last, Paste the link at WGT. I have never been on a MAC, or used photobucket, so I can only hope these are accurate.

I sent you a PM. If you like, I can post them on the forum on your behalf......just let me know. I know ultimately you will want to be able to do this yourself. Hopefully someone will be familiar with which program in a MAC you use.

Gotta love the consensus of information we get sometimes huh?

Has anyone seen a reduction in coxsackie antibodies while taking acyclovir? Kiddo's immuno stated today that he feels not much touches coxsackie, so I wanted to poll everyone here?

Mine has HHV-6, EBV, coxsackie (see sig for which), and high titers for all the immunizations especially rubella. Where they get this stuff from I am not sure. I am seeing her immuno on the 25th and I am going to ask about Virastop 2. Kiddo is already on amantadine for rubella. I just asked him today about acyclovir, for both the rubella and coxsackie, but he feels nothing much touches coxsackie. We will talk about it more at her appt.

Yeah, I get the "flare" when not getting their way. Talk about a tight rope walk.......kiddo has genuine emotional lability related to PANDAS, but sometimes she also has tantrums related to being 11, chronically ill, not getting her way, and autism all mixed together. They present almost identically, so I have to be a master detective to figure out which is which so I respond appropriately . That can be quite tiring in itself. I find if she melts down, then throws something and I get after her and send her to her room, if she is just tantruming, then it clears up quickly. If it is true PANDAS, it does not clear up near as fast. Either way, throwing things is not tolerated in this house, so I give her alternatives to release frustration but boy is this stressful and tiring!! I am glad you are getting even a small break. I cannot imagine the suicidal threats, so I have no real advice.

Our kiddo had this too for months, and it did not resolve until we had her tonsils removed. Now, she still rarely has a fever, but it is more normal in its presentation.

Offer to fill out a medical request form so Dr. Najjir's office can request the medical records straight from any relevant physician. You will need one request form filled out for each doctor you want records from. Often doc's have these forms on their websites, or they can e-mail it to you and you can fax/e-mail it back to them. You could also get doc N's fax number and request your docs to fax her records to them if they will. Sometimes this works, sometimes it is a waste of time as they say they sent them and the receiving doc says they never get them, and you have no idea which is the truth. For the future, I would get request forms from all the relevant docs and order a set of medical records from each of them for your personal use. You may have to pay for them, but having them is priceless IMO. Then you can just photo copy them for other docs you may see to save time. I have also found in reviewing the records myself, I often find things that I overlooked at first, or comments from the docs that were never mentioned to me.

Our pedi prescribed in the beginning even though they had never heard of PANDAS. They were amazed by the results they saw in kiddo. In the long run, they did not want to do long term ABX, so we started seeing an immuno who is on the PANDAS list as a specialist. We have since found many high viral antibodies contributing to our stalled and regressive journey.

I did a google search and here a few tablets. They are of varying potency and strains: http://www.walgreens.com/store/c/walgreens-daily-probiotic-digestive-support-tablets/ID=prod6028665-product http://www.puritan.com/buy/categories/probiotic-tablets http://www.amazon.com/Natures-Bounty-Probiotic-Acidophilus-Tablet/dp/B004JO3JTM Good luck.

Kiddos doc wanted to start her on Prozac as they felt it was the first line of treatment. I opted go with Zoloft instead since it is a second generation SSRI and I had not heard near as many negative reports of suicidal behaviour from it. We started Lemon Balm when kiddos separation anxiety was at a peak. She is taking 500mg twice a day, morning and night. I did find some brands work better for my kiddo than others. We are using Nature's Way, Melissa Lemon Balm. You may find another brand works better for you. At her worst, I could not spin around without bumping into her if she was awake. She literally would not be more than 2-3 feet away from me. Within a few days, I was able to go outside to take care of my chores, and kiddo was content to stay inside without me. She soon after was willing to go outside on her own. I gave the night dose hoping it would curb her terrible nightmares, and it has. I am not sure if it will help in your situation or not. Unlike the SSRIs, you will find out how he reacts within a few days to a week. It also will not stay in his system as long as SSRIs if he does not do well on it. I would not expect as severe a reaction as he had to Prozac, but with our kids, I can understand your concern.

We use the similar, cheaper product (bio-enhanced curcumin) that we get from amazon. It is just over $25.00 for 120 caps. My daughter and I both take it. It has relieved the greatest majority of my arthritis and sciatica pains. I noticed a wonderful change in my energy level and reduced pain within two weeks. Kiddo seems better on it than off. It also is supposed to help eliminate yeast in the gut. You are supposed to start slow and build up to a higher dose. We are now both taking 500mg twice a day.

It is naproxen sodium 220mg (Aleve) if you are referring to the OTC product. It does work for up to 12 hours, but starts wearing off in most around 8-10 hours. I still usually dose it every 12 hours for either myself or my kiddo. I gave it to her after her tonsillectomy as her night pain med because it lasted longer than IBU. I only occasionally use it place of IBU during the day mainly because IBU is cheaper and easier for me to get in my small (tiny) town. I need to drive almost 25 min to a place that has any decent price for the naproxen sodium. Joybop, kiddo was on Zoloft and IBU at the same time for months and it never caused a stomach issue for her, but I made sure she had food in her tummy before dosing the IBU at all times. Kiddo took low dose Zoloft for anxiety. It helped a little at first, but I found lemon balm helps her more. My kiddo has only mild OCD for the most part and I do not think it helped that in her case.

We see Dr. Rao and have BCBS. You are correct he does not take that now so we file with our insurance ourselves. If you want any information about Dr. Rao during your research, feel free to send me a PM. Dr. Rao is "only" a bit over an hour from us, so we choose him.

Kiddo was 11. We did 5 days of zith before and after. We left the surgery center about an hour after the procedure and got her home before she was completely awake, but then my kiddo is usually mostly out for almost 24 hours after anesthesia. We had them put ice on her throat immediately after surgery to reduce swelling. The staff insisted this was not normal and was unnecessary, but I insisted and they relented. I kept an ice pack around for when she first woke up every morning as the meds had worn off by then. I medicated as much as she need during the first 7-9 days, then backed off. We used 8 hour tylenol, aleve (lasts longer than IBU), and hydrocodone (kiddo refused all liquid meds within 24 hours, so she took only pills after that--I was lucky enough to have hydrocodone in pill form my headaches as well). We fed her mostly crushed popsicles in the morning as the meds started to work, and yogurt, ice cream, pudding, jello, cooled broth, smooth cream soups that had cooled, mashed potatoes, etc..... the rest the day as her throat would tolerate. I scheduled feeding attempts around peak medication effectiveness. Mornings were the hardest, but kiddo said the ice packs helped A LOT until the meds had a chance to kick in (she clung to them until the meds kicked in). We also used ice throughout the day for as long she stated she needed it. We did not really get "over the hump" for about 9 days, then things started smoothing out well. Of course, every day was a little better then the previous, but she was in what I would say was considerable pain until about the 9th day. I was not expecting her to hurt for that long, so I was surprised. Maybe every kid is different. I recommend pushing hard to get the tonsils cultured. Our kiddos came back with actinomyces bacteria which surprised her immuno. Call the place where she is going to have this done prior to the procedure. My daughter is very upset by other kids crying (autism, etc) so they placed her in a private enclosed prepping room. All the other kids were in what could be called a ward with curtains between them. Kiddo got to watch movies and a staff social worker came in regularly to check on her and play with her while we waited. The surgery center we went to makes special arrangements for "special patients". I was also surprised to discover quite a few parents take their kids in for T&A and do not even tell them they are having surgery or prep them for the throat hurting when they wake up . We did four play surgeries with four of kiddos stuffed animals and tried to go over everything that would happen, even her waking up with out mommy and daddy there. It helped her a great deal with coping.

You should be able to load them in a post by using http://tinypic.com/index.php. If you do not know how to do this, let me know and I will see if I can walk you through it.

My daughter's HHV-6 and coxsackie (etc...............) are quite high, but she only has trouble sleeping when she has high yeast in the gut. Her gut yeast is under control right now, and she is sleeping normally right now. It would be easier if this was a one size fits all presentation.