thereishope

I think pineapples are also anti-inflammatory!

I would think that's okay. How about the Augmentin then a tall glass of pineapple juice to ensure the whole dose is ingested? Or would you just mix in on a spoon?

I felt more comfortable messaging you.

I'm sorry you are going through this. Were these behaviors (threats and such) present at any time prior to IVIG? Could this be flipping back the pages? My son at age 5 threatened to hurt himself and wanted to not be around anymore. It's an awful thing to hear your child say that. I've had suicide enter my life before ( not me, but loved ones) so that hurt my heart even more. Touch base with the dr like others said. Can he take Benadryl? Do you know how he reacts to it? Perhaps that will calm him down. How much does he weigh and how much Ibuprofen are you giving him? If it comes to hospitalization to ensure safety, please make sure the hospital understands PANDAS. This is very important. PANDAS kids are different than what they are use to dealing with.

When my son did a 5 day burst, it was rather soon after contracting strep the second time. I noticed improvement on day 4 (after 3 doses were completely in his system).

First off, please tell your friend that my heart goes out to her. When my son stopped eating and started losing weight (for him it didn't stem from a gagging issue like your friend's), I remember being so scared and just wondering how can he fight this and get better without nourishment. I even went as far as to explain to him what a feeding tube was and how he needed to eat or it might eventually get to that. Even explaining that to him didn't help. I also saw my youngest son with a feeding tube in him when he was born and my mother had a feeding tube. It's hard to see a loved one going through that. So...I would run bloodwork for strep and Mycoplasma (both can be the culprit for pneumonia). Is he on antibiotics right now? If he is not, I suggest that she have a talk with the doctor and ask them to start him on Zithromax until they get blood results. I say Zith because that can get to strep and possibly Myco. If they say no, she needs to tell them to take a look at her son and expain how the state he is in is acceptable when the chance at a normal life is a possibility with a trial of antibiotics.

Some people have had success on Omnicef too. Have you tried Ibuprofen to see if that eases symptoms? It's a bandaid that's not the full solution, but it might help.

What is everyone's opinion on this Fact Sheet? I found it online. Do you think it's good enough to pass around? One thing I have a problem with is it states that children under 5 may not have symptoms but not other age groups. So, that's one clause to be added....PITAND and PANDAS kids in all age groups have been known to be asymptomatic. http://www.edcp.org/factsheets/mycopl.cfm

Welcome. In regards to antibiotics, the time frame varies whne you start to see improvement. For some, it's immediate, other (my son), it's a few days into antibiotics, others maybe a week or so. You do not not need to see full recovery in order to say the antibiotics are working. Recovery actually takes a long time. With my child, I saw the symptoms platuea and stop worsening (to me, that's improvement), or I slowly saw some issues go away. A problem with antibiotics is finding the one that will work for your child. So, if you do not see improvement, it's not necessarily that it's not PANDAS or PITAND, but that it's not the correct antibiotic for that child. A good number of doctors will still give amoxicillin or penicillin to treat strep. Well, it appears that it may work for a very small number of PANDAS kids. Most kids on this forum seem to have the most success with Augmentin or Zithromax. Note...some do well on Keflex or Omnicef too ( I'd say those 2 come in second place on the forum). As for figuring out what may be causing the autoimmune reaction, like Mom w/OCD son said, you will want to investigate a few things like strep and Mycoplasma. A basic strep test is an easy place to start for strep. You can also rule out strep in all family members since some PANDAS kids will react to exposure as well. I know you said you've read this forum before, but I will give some links that are important in case you haven't seen them. PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 PANDAS Flowchart (suggestion for going through the diagnosis process) http://www.latitudes.org/forums/index.php?...ic=6688&hl=

Nita, like Dr K said, some PANDAS kids do not react well to psych meds, in general. It may actually aggravate their condition. I'm bringing this up because of how your son reacted to some of the meds. I see you just recently joined the forum, but something tells me you are are well versed in a lot of the areas. But, just in case you have not seen these threads yet, these are very helpful... PANDAS Fact Sheet (includes a blurb about PANDAS and SSRI's) http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266

You're right. The antibiotic does not affect the antibodies. However, I was asking what antibiotic he was on prior to IVIG to try to see if he had an infection that the antibiotic wasn't erradicating and the titers were continuing to rise since his previous blood test. Hence, why I was also curious what the timeline was in between tests. As to the question about antibiotic post IVIG, I was making sure he had some type of protection after IVIG. I know DR K is good about that. However, the one thing I have heard is if the child is prescribed Augmentin as the prophylactic, it may be more beneficial to have it taken twice a day as oppose to the one dose a day that is sometimes prescribed. If someone in the family has strep, that may make your child titers rise just by being exposed.

Yes, he's the weight of an adult so you can follow the dosing on the package. When he takes the 600mg....do you see it wearing off before you give more or are you just giving it around the clock even if you do not see an increase in PANDAS symptoms? I found my son did need it in the morning. Each kid seems to have different times in the day when the symptoms are worse. If you give the 600mg now, then you can always "test" it in a week at a lower dose. Perhaps, over time, he will need less. Unfortunately, the only way to find out is to try.

So you had titers checked after IVIG? Just to make sure...he is on an antibiotic still (post IVIG), right? And prior to the increased levels, when was the previous draw and what antibiotic was he on prior to IVIG? Have you ruled out strep in all family members?

About Ibuprofen (IB), the dosage depends on weight. How much does she weigh? Also, I always try to to do the minimum and try to space it out as much as I can. Did you try a lower dose first? How often I gave it to my son varied. There were times, IB didn't work, there were times I gave it every 6 hours, there were times he only needed it once in the morning.

I'm not, but he said he's going to try to get his daughter to video tape it and possibly put it on you tube for everyone to view. The question is if he can convince her to do it:)

All I can say is to be comfortable with your decision to follow through on IVIG. Maybe contact SFMom if she doesn't come on here in the next few days. She has little ones that are mild (maybe symptomsless, but Cam K puts into catagory?). She goes to DR K and he had a different take on IVIG for her younger ones. I know every child is different, but you need to feel comfortable with the treatment and it may be best to discuss it with someone in a very similar situation. When was he hoping to do it?

If you go to "keyword" at the bottom of the forum screen, you can search for more results. What I suggest is if the person hasn't posted in awhile is to message them for more info to ensure the request gets bounced to their email. Here is one thread about homeopathic "remedies". I know I've read more though. http://www.latitudes.org/forums/index.php?...;hl=homeopathic As you begin to add supplements or try different protocals, take it slow. PANDAS kids can be sensitive and respond different than the average person. By taking it slow, you will be able to pinpoint what is helping and what is hurting (if setbacks should arrise). You can also add Omega 3's and DHA to her regimine. That is very good for the brain.

I'm happy treatment will start again. Please keep us updated on her.

You are one amazing Mother! I am so happy you are seeing improvement. It's still early and you will probably see even more good things popping up. Keep us updated!

Interesting link! What I find more interesting is that only 58% had a tumor. What about the other 42%? Depending on the age, I could go as far as saying some of those could have possibly even been PANDAS or PITAND. Now I want to know more about this! Thanks for posting that! This article gives me hope! Not sure how to post a link, but I am going to try. Vickie thanks for posting the above article, of course I was then curious and found some more info that explains how the doctor found this connection. Good stuff http://journals.lww.com/neurotodayonline/p...p;type=fulltext

How long did he have the eye blinking tic for before you realized PANDAS?

This was posted on here before... "A positive result indicates prior exposure to Mycoplasma. A single positive IgG result may be present in the absence of any clinical symptoms as specific IgG antibodies may remain elevated long after initial infection. Recent or acute infection can only be documented by a positive Mycoplasma IgM result and/or a significant increase in the IgG value between sera drawn two to four weeks apart. Specific IgM antibodies may persist for several months after infection or be absent during reinfection."

I am hoping to find time to write to the author of the article and brief her on PANDAS. I know it's not the same thing, but there's a bridge to the PANDAS topic hidden in there with symptoms of schizophrenia and bipolar and an autoimmune reaction. I'm from Cincinnati, I've written this newspaper before and never heard back from them. I just read that article thinking how "funny" they found this autoimmune reaction in this woman in Cinci, the same city as Don Gilbert.

http://news.cincinnati.com/article/2010033...+monster+tumor+ Nightmarish tumor took her to brink

P.Mom might have more exact info on that since she did the actual submitting last night. I would think mid month. They need to read the submission, make sure we are "playing by the rules" that they listed, and I think Pepsi legal views it too. That's to be expected. It's a big corporation. Personally, I don't see any problems they would have with the text or info provided.