T_Mom

We have had good success with Zyrtec here -- seems to help with no adverse effects.

Spitting has been a symptom for both children during episodes--spitting wherever and whenever. Holding saliva as well for my older d. These symptoms resolve when the episodes of OCD/ticcing resolve, with antibiotics and/or prednisone--typically.

I am so sorry you are going through this-- Is he on antibiotics now? We have had a couple of real set backs in our house and now trying to "regain" our equilibrium (not easy.) We finally decided to switch my oldest d back to the antibiotic which helped her for over a year, amoxicillan, and finally things are seemingly calming down some-- If he is not on antibiotics now, would it be worth a try to go back to the one that seemed to help? I realize that for some there seems to be a help when "switching up", but in our case my d did not show improvement on Augmentin or Azithro, but did once we went back to Amox. We have found this to be helpful--when sliding down the slope again.

I would not chance it--no way! take him out for an alternative fun activity with his friend later, much later!--watch a movie at home--anything but possible strep exposure! We are still struggling with the remnants of an exacerbation from a strep exposure (family friends unknowingly) and it is NOT fun (it was in August!) Our friends were kind enough to culture all 4 kids last week !! as a follow up-- No birthday party is worth the risk -- believe me.

makeitfromscratchmom-- I understand your feelings about wanting to go natural--but if your child has been diagnosed with Sydenham's chorea...that merits serious attention. (OLE just may not kick it if it is serious.) That must be a very difficult time--I am sorry.

YYYYEEEEYYYYY!!! Praise God. I have been thinking about your daughter this week Dave-- (my husband sat next to you at the pizza dinner in D.C. this summer So, so happy for you all--

Here is a previous thread on "hearing voices in the head"...from April 2009. Our d had the same. http://www.latitudes.org/forums/index.php?showtopic=4706&st=0&p=32396&hl=voices&fromsearch=1entry32396

Oh my goodness KMom--what a nightmare. (I can relate as right now we are spinning w/ various abx options, etc.) I know you know these details far better then anyone else, what strikes me is that as you say, "...2+ fantastic weeks post IVIg..." and that with the decrease in abx she flaired. With the feeling of reflux and the sore throat -- we had the same in my older d this past month, and a terrible flair (still lingering on) a doc. suggested allergies causing the sore throat (?) as the strep culture and titers came back negative. I put my d (13, 125 lbs.) on one Zyrtec a day and it has helped. We also switched her more recently back to the abx which helped her so much for so long (from Azithro to Amox. again.) I think the Zyrtec made a big difference for her. (--as an aside, have you had lyme testing done, gee, I hate to mention that--but with these ups and downs it seems prudent to rule it out as well. A reputable doc. suggested using the Lyme C6 ELISA which online looks to be preferable to the standard WB and likely available at your pediatrician.) ps-- w/ your sore throat, it is worth a full check as well. At this point I just ask for titers (why not!) and a full culture every time:)

Hi--I wanted to reply as our d has had 3 steroid bursts in the past two years. I fully understand your question: "...steriod burst done? I don't want to call in too soon, however I don't want to wait too long either. Not sure what to do?" I think every parent on here understands that very feeling...When do I move ahead to try the "next step" of treatment--when are my child's struggles too much to bear for them (and the family) and we now must try something else. We are either there now, or have been there-- I can say that once we decided to go for long-term full strength antibiotics our d made fairly obvious and slowly steady progress week to week for about 4 months. (and I do mean slow and steady trending in the right direction!) Then she seemed to hit a plateau and "stay the same" for about a month. At that time, we felt it was time to try something to help her further. In our experience, use of the steroid burst helped when nothing else was changing with the antibiotics. They are not to be used lightly in that there can be various issues associated with the use of a steroid burst certainly. However, for our d they were a huge help the first 2 times.

Thanks -- I appreciate your feedback--

Hi Stephanie, I have searched around and cannot find any references to clostridia causing tics. Do you have any info. on that which you could share? It seems to me that any abx could aggravate clostridia -- right? We are trying to decide whether we switch from azithro--to something else, and if there really could be any connection between the Azithro. and tics? Thanks--

Hey LLM--Good to see you here. Hugs are sent your way and I agree with the above statements by WD, you have given so much to the "cause" and certainly helped me along the way-- Glad there is a turning in your dear s's symptoms!

You have gotten some great suggestions here I think-- I will mention that in our case, it was not until we saw a decrease in symptoms when our d was on a month of full strength antibiotics (with only omegas, vit C, vit D, and probiotics--as supplements) that we then began to really know it was "Pandas"...If you see a decrease in symptoms with abx and/or steroids (time and again) then it would fit the description. In our experience, this is a clinical diagnosis, with the Cunningham research to add to the "picture." Re: lyme issues--of course abx are the first rung of the ladder for treatment--In our second d's case we felt comfortable starting the abx for the sudden-onset OCD issues, and initially it helped.

This forum is a WEALTH of information--thank you per usual. This whole zithro. conversation-- I want to add, that my older d's tics are worse right now and she is on azithro. It is like a tourettes reaction, with intrusive thoughts triggering eye rolls and confessing. Very difficult and she has been saying she is not able to "stop" it -- She has only had the Western Blot and it was negative. We do not know if the azithro is making the tics worse, but reading that it may have that effect on others certainly concerns me. Do we know if this has been widespread? Common? Thank you --

Hi Searching Mom-- I am sorry you are dealing with this-- I know for us the "flowchart" that Buster has put together has been close to our experience. Have you seen it? Look at the top of the Pandas forum under helpful threads. For us this was a "clinical" diagnosis...meaning, we tried antibiotics and OCD/ticcing was definitely affected. Steroids as well work in a similar fashion for us-- I would look at the flowchart and see where you are on it, that would be my best suggestion for a mom asking the type of questions you have right now-- I hope you are able to find real relief for your dear child.

Hi Cindi, you recently did a steroid burst -- correct? I have heard that the steroids stay in the body for about a month afterwards (?) I would call your doctor and ask to speak with her to ask about these headaches--or email. Seems if they are every day that you really do need to follow up on that-- Is he drinking lots of water during the day?

During the worst exacerbation our d had an MRI. It showed sinus congestion--we subsequently treated her with a steroid burst and Amoxicillan full strength...She cleared.

That is very interesting--thanks for sharing it on the forum. What happened with the Augmentin, was it full dose for your dd weight? May I ask what the bad reaction looked like and if your dd was switched to a different abx? Thanks--

You are right. We don't know for sure if abx are clearing infections and/OR anti-inflammatory, and which one is the critical component (most likely both I believe) -- What we DO know is that for some children (in the midst of this paradigm called Pandas)-- for some, OCD and ticcing is eliminated (or at least decreased) with antibiotics. Off label, out of the box, and yet we know it as we have our kids who are living this in real-time. I think the blood work is critical to both "check" all issues to be certain that they are being addressed, and to provide you with a tracking tool over time. We have two daughters who do flair with exposure to strep and other illnesses, and who have responded well to abx in the past. Many of us have found that cutting back abx may cause a flair--(Sammy Maloney as well.) For each of our children it is a balancing act, one day at a time to try to free them of the effects of this illness--(sure hope that White Paper comes out soon--)

With Peglem I too wonder what treatments are you using? With my older d, the effects of antibiotics (initially--with the first couple of exacerbations) were really evident. Typically within 48 hours we would see a decrease in symptoms. It was wonderful.

Thanks for doing this Buster. I just voted for younger d CBC. Lymphs high, platelets high, and 2 bands on the WBlot positive (18 and 31.) During exacerbation.

Good heavens, that is interesting...The fact that with her worst exacerbation our d had nasal "congestion" (no positive throat or blood strep) is right in line with this entire scenario. I can't really follow the article -- way beyond me, but Buster's comments hit home. Thanks for posting it.

Way to go Nancy-- Your friend is lucky to have you! You might ask her (as an aside) if she has ever had her B 12 levels checked. Pernicious anemia can cause sudden-onset dementia, as the elderly sometimes lose the physical ability to take in B 12 from their food (through the intestines)...the result is a very low level of B 12 and increasing confusion, = dementia. B 12 shots are given and the mind comes back--I had a friend who this happened to, B 12 levels are easy to check in blood work...

My two daughters are not on the spectrum. I can attest however, that when my oldest was in her worst exacerbation she presented as having severe autism (non-verbal for a month, holding painful positions, spitting, eyes closed, gone.) It was clear to me that at that time she could have been identified as having autism. There has got to be a connection.

I would take the approach that Pandas involves basal ganglia inflammation which affects the ability to write (including both written expression and basic handwriting.) Dr K has this noted on his website, and I know I have seen it in a few online "info" sites as well. Don't worry about substantiating it -- it is true, that is enough. You can take examples of pre and post writing if that helps-- The teacher should be seeing the same issues at school, or will soon. I asked for time and a half on tests and for them to accept my writing HW as necessary. So far this has been a big help.