T_Mom

Hi Brandy Best interpretation of indivi. scores is given looking at the graph on the following article (here is the link:) http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf As so many have pointed out the CamKinase is an indicator of neuronal activity. Here is a very helpful thread -- read down and you will see a collection of threads on the results-- http://www.latitudes.org/forums/index.php?showtopic=6266 Hope these help--

Well said Isabel-- Once I saw my child getting better with treatments I only wished we had treated more aggressively earlier --for her sake.

I would say YES, definitely a possibility --In our experience (and we were holding our breath) but once healing happened with the right treatments for PANDAS=YES, those skills came back. Last year, our d was getting Fs in Math due to PANDAS -- once we got the treatments for PANDAS in place she "skipped" 6th grade math (only worked on it in the summer!) and jumped up to take Honors Math this year. Mind you, we kept her on FULL strength antibiotics (Amox.) for 9 monthsbefore we saw these results (+ 2 steroid bursts.) With the correct treatment--based on our first hand experience, I would say Yes. Though no one really knows for sure--case by case basis. This illness merits treatment until it is erradicated--for your child's sake.

Hi -- I don't have much to add to what all have so aptly stated. I strongly agree with DCMom that there is good reason to find someone that has had EXPERIENCE treating kids with PANDAS... If you cannot get to someone like this, then call them on the phone and pay for a phone consult--well worth trying it in my opinion-- The PANDAS experienced doctor can advise the local doc. as necessary. Our d did very well with full strength antbiotics and steroid bursts (2 in one year). We considered these to be very BENIGN compared to what she was experiencing. These have been effective in erradicating her OCD and tics. It sounds like your child may have additional considerations to contend with--I am so sorry you have had to find this forum, but I do wish you fast success in finding the right treatments--

Hi -- It is there--at the top of the forum under "Helpful Threads"

Parent4eyes, I am thankful you have tried, and are having success with, antibiotics. In our experience, as long as you are seeing a TREND in the right direction, this is good and means progress. (Holding the eyes shut--seems to be an odd symptom a number of Pandas-hit kids have had, our d did this too.) Remember the construct of "turning back the pages", wherein it may be a replay or shuffle of new/unusual behaviors as healing happens (thank you Dr K for that observation.) It could take months. When we hit a plateau for a month (ie., no significant improvement being made) we added a steroid burst to the antibiotics and that really helped our d. (2 steroids bursts in one year.) Overall it was a full year of healing. Rest, vitamins, omega 3, probiotics. Healing. You mentioned that you increased the azithro. Is she on "full strength" now for her weight? Meaning full strength being what they would give her if she had an illness? Best to you--be patient and watch the trend would be my my advice.

Our d is 12 -- She remembers everything about what she went through two years ago. (very severe) We started talking about PANDAS with her as soon as we thought that was what it was. I think it helped her to know that (1.) It was not going to be permanent, and (2.) that other kids had it! She read Saving Sammy this past year and had great compassion for what he went through--her experience was similarly severe. She is now 110% back--straight As again, decent handwriting, adv. math, and a very normal 12 year old. (Full strength long term abx and 2 steroid bursts + TIME) There is something to be said for taking responsibility for your health-- Very few times has she asked why she has to take her "pills" and she understands why--She also understands it is illness/and/or strep triggered so she knows to be aware if kids are ill around her.

I entirely agree with EAMom-- this is not normal kid behavior. My d did this type of thing as she slipped into OCD/PANDAS/anorexia, it needs to be watched carefully -- do you know what he weighs now, so you can determine if he is restricting intake-- don't make a big deal out of it, just try to observe would be my thoughts--for now.

Strategically, in looking at the number of comments left on the sites the top runner (#1) for 250K is the Foster Group Home -- they have less then 500 comments on their site--which means to me that they have a real network of online voters voting mass quantities. If we could get on the Foster Home's list (if they have one!) I think it could take off:) WMS is another cause that seems to have active and many voters. I see 38 hours ago Mr Thomas listed PANDAS ON their "yes vote-for" list of causes in a comment!! I am voting the suggested list, but I wonder if the sites that are in the top 10, or almost there, seem to be the ones that might vote for us as well--Good work everyone getting us organized. Still worth continuing--and continuing.

Welcome to both new families--I am so sorry you have had to find the forum, but you are in a good place of parent-support. M2ar2...The rash concerns me and I would call the doctor to speak with him/her tomorrow-- What a blessing to have that doctor and NP!! They are obviously tuned into your child--The top of the PANDAS forum has numerous helpful threads, including one on doctors parents have seen--who were helpful. You might want to add a note about your doctor. All the best to both of you dear families--

I see Megan K (3 hours ago) noted she was leaving 124 votes from the SKIP program for the baseball/softball field in Lebanon CT! They are in the 50 K category-- this is exhausting! Is there any inkling as to how many votes any of us actually get each day -- can we see that anywhere? keeping on...

Yes, our older d had "classic" Pandas--and no rages.

Sounds like you may have found a knowledgeable doc! If he is not listed on the parent recommended list on this forum can you please add him? What did he prescribe for Pandas treatment? How long? I think Buster's links at the top of the PANDAS forum page under "helpful threads" will explain better then I can the answers to your questions-- read there. There is also excellent information on the following website--which is a wealth of information and includes the rationale behind antiinflammatories and immunomodulation-- www.pandasnetwork.org Please keep us posted on how it goes--All the best to you--

I am sorry it sounds like a tough time right now--I can share that our d's OCD and face stretching tics improved significantly with steroids (the Dr K "testing" technique for PANDAS) and then long term antibiotics. I have read that if a child has tourettes that steroids may not be the route to go-- I would see one of the doctors who have been treating Pandas on this one certainly. In our case a month of long term antibiotics made such a difference that we continued--still on it. Saving Sammy is an obvious example of the possible effects of long term antibiotics on Pandas, that book was an encouragement. (--just read DCMom's response--and would certainly agree that for some Pandas kids antibiotics may be worth a try as a first-rung treatment.)

We have chosen to "down size" the activities-- certainly when my d was at her worst she could not do anything--as she got better, we were very cautious so she would not be overloaded. She no longer takes piano or swimming, nor does she watch tv or computer games during the week (well almost never -- we found these to be, in the end, counter-productive to real rest. She did one sport in the fall and one in the spring (took the winter season off) -- youth group at church -- and horseback riding once every two weeks. Enough. We try to eat dinner together essentially every night--and read before bed. A full day.

Wornoutmom-- I wanted to add that on zith we saw initial improvements at one time...and then nothing--at which point we switched to Augmentin. Cam Kinase 180+ Personally, I think the "lesser" antibiotics are best to start with and to work up IF necessary-- but, as frustrating as it is, it takes time for the inflammation to be affected. Probiotics of all types, vit C, vit D, rest, etc...(I have started making kefir based milkshakes to sneak it in--plenty of chocolate sauce.) The first time we decided to try 30 days of abx. made such a difference that we continued-- but it was most evident in looking back at the contrast month to month. Here Buster's behavior charting details can help determine what is working and what is not! I had to remind myself to stay the course--and give the treatment time to take hold, we changed antibiotics after a month or more, if nothing improved over a few weeks (3-4), I hope things calm for you soon--very soon. (Have also used Advil for a few days, 200 mg twice a day, when there were increases.)

F.A.-- Good questions all-- I ask them daily myself:) The best I can say is that our "plan" evolves according to response to treatment over time. The symptoms of our children were serious to the point of making them non-functional. Abx and steroids have helped tremendously. To us, very benign given what we had gone through--You have already gotten to IVIG, I know you understand--I hope you see good results soon--

I know this is such a puzzle-- Someone suggested Lyme to us as well--had d tested conventional bloodwork, etc. negative...I still wonder. I will say that reading your post your experience sounds alot like the saw tooth ups and downs..overtime, time, time... Are you saying that with the PANDAS treatments your child improves...overall? It took consistency and much time and treatment (abx and steroids twice) for us to see 100 % again--and only after a full year could we say she was alright again (while still continuing on full abx!!!) This darn disease takes time to heal from--one thing at a time. (In Germany, where my sister lives--who has been diagnosed with Lyme for years--they treat aggressively and proactively with abx. Given that it is fairly standard to do so here as well, I have felt better knowing given that our d was on full strength abx for over a year (continues to be ...) that we "are" treating lyme according to most treatment plans...

GREAT ARTICLE Buster!!! Thank you--

Our oldest d (the more severe Pandas experience) has been on full strength Amoxicillan for over a year. Doing well--very well. I want to point out that it took 10-12 months for her to get back to herself again...all the while on full strength abx. and she had 2 steroid bursts along the way--It took TIME, we also give probiotics, vit C (1000mg), vit D (1000mg), multi vit., Omega 3's (1000mg) and try to eat "real foods, fresh fruits, veggies, lean meats, etc." also lots of rest and sleep--avoid all stressors as much as possible as healing takes time and energy-- Second child, Augmentin XR for about 6 months now, Saving Sammy dose of 1000mg of Augmentin XR twice a day. No more OCD, though slight flares of anger and upsetness when others are ill around her. We will continue with abx until it is no longer needed. Neither child has had any difficulty thus far as a result of the antibiotics, thankfully--on the contrary, life for ALL has improved:) Like Poetmom's note above, I would agree that possible prevention is good-- More importantly, I believe that abx are having a direct "treatment" effect though-- anti-inflammatory immunomodulating effects which quell the OCD/ticcing reaction in PANDAS. Thus, the timeline for treatment will only be determined by the treatment effects over time. Hope that helps. We decided it was certainly benign to try long term (month or more) abx compared to the life altering experiences the kids were having--it has worked.

I am continuing to cast our votes for the list posted earlier by various people: PANDAS! WMS Jett Sky U SMA 250K SMA 25K Ceritas Camp Out for Cancer Ride 192 Mule Muscle and the last one varies Consistent block-voting sends a message and garners votes to be sure--but we need to be strategic about WHO we vote for ( I think:) as that directly ties into the number of votes they may provide our cause. In our discussion yesterday it was noted there were "causes" that appeared to have FAR fewer comments then is typical and some of these were definitely FRONT runners! (SKY U, SMA, for example) --so who is voting and voting for them? Jill speculated that some groups may have lists of email addresses which people have agreed to provide for vote casting purposes and someone may be entering those long lists daily. The more I thought about this the more I agree that is VERY likely happening. These "types" of groups may be likely to "add" us to their BIG voting if we are posting comments and voting for them--(taking pity on us.) -- At the same time, I think it is important to try to get the votes of groups that may have "alot of voters" -- as in the WMS (Middle School) and the Kickin' Mules--a High School. Good night everyone!

Good Point Jill! I think that is a good deduction indeed! we need to rally the supporters in the next 14 days!

I have no idea, but I do think it is interesting...especially with SKY U being number 2 in the 250 K category!...seems to be odd. ALso, I just figured out tonight that if you click on your "profile" tab in the bottom left corner of the screen all your favorites pop up -- easier! Keep voting and spreading the word--

Wow-- what great news to hear about Meg-- thanks for posting that tonight...a bright spot in the evening. --and I agree, (as we have some of the same here at times...) baby talk is no big deal T.

I just noticed something rather odd-- One of the top contenders for 250 K is SKY U and they only show 440 comments from voters. Another top contender, New Cottage shows only 378 comments from voters-- Meanwhile, we have over 1400 comments -- Smile Autism over 1500 -- Ride 192 over 1500... Do you think that the "no comment" status could possibly indicate something about their voters? seems really odd to me. Also-- I like the top picks still: WMS, SMA, SMA, Ride 192 (mentioned us on their FB page), and Jett (they all seem to be voting for us...) I think that the other RIDE MS site is also a good one. It is in the running for the category and is a major group cause which I suspect is well supported, I am going to try to send some votes their way and see if they send back.