worriedmommy

I see what you all mean. I think I was assuming he was both a carrier & had an active infection in the past few weeks. Hmmm...I just don't know what to think. All of this is really making me question whether his recent behavior coupled with these titer levels is indicative of his having PANDAS too.

Thanks to everyone who has posted on the importance of blood testing in the absence of a positive throat culture. We have been trying to determine if anyone in the family was a strep carrier since last fall. (This was before we had ever heard of PANDAS.) Dh, dd, ds & myself were all cultured. The rapids and 72 hour cultures all came back negative. Dd then had sudden onset of tics, and we were introduced to the possibility of PANDAS. Dr. T. gave his opinion, and agreed that dd has PANDAS. Her Cunningham test also came back at 150, further helping confirm our suspicion. At the same time, we've been getting suspicious of ds4. He's been exhibiting some rage & ocd behaviors. (things dd did in the past and we "wrote off" as toddler behavior.) In the mean time dd came off of Biaxin at the beginning of April and by the 9th of the month was in a major PANDAS exacerbation. We immediately put her on azith, which she is still on. Two days after her exacerbation ds came down with an all over body rash and red throat. I had him cultured and his rapid & culture were both negative. (I was crushed as I was certain he had strep & this attributed to dd's downfall). Anyway ds had his 4 year well child appt last week, and I demanded to have his titers checked. The doc just called to say his ASO is 369, with the normal range for his age being 0-70. His AntiDNase is 346, with the normal range for his age being 0-256. So...looks like he does/did have strep!!!! The doc perscribed 10 days of Keflex. (This is not his regular pediatrician so I didn't argue.) What I want to know is what type of abx should he be on...and for how long??? Aghh...I really am in shock right now. It is also really making me revisit my hunch that ds may have PANDAS.

Oh, sorry, try this. http://ajplung.physiology.org/cgi/content/full/290/6/L1139 What would this mean in terms of water with flouride in it? We don't have flouride in our water, but the water at dd's school is public water, which does contain flouride. Also, in terms of flouride at the dentist. The kids don't actually swallow that, so would that really pose a big risk?

Do any of you use HEPA filters to reduce the allergens in your house? The pollen count is SO high right now, I was wondering if an air purifier in dd's room would help.

Allie did not have a reaction. She is IgE deficient. I'm not sure if that's connected- don't have research to back it up, but since IgE causes mast cells to release histamine...I'm thinking. Interesting. Dd has had her IgE tested, and it was normal. That was months ago. I wonder if things have changed. My bad...I just looked at dd's blood work again, and her IgE was not tested. Hmmm...

Good to know that this has happened to others. The strange thing is that last year she had a skin prick test for seasonal allergies and she did react to the histamine prick, as well as many trees, pollen, etc. I was just surprised that this year she didn't react. They also said the blood test was the way to go at this point. Poor kid has had 5 in the past month. I feel so bad having her get another one.

I have not noticed any negative reaction to the steroid nasal spray. The docs told me that the nasal spray is not systemic, so there are rarely negative side effects. My child does have asthma, but only mild intermittent, so she's not on daily meds for that.

Allie did not have a reaction. She is IgE deficient. I'm not sure if that's connected- don't have research to back it up, but since IgE causes mast cells to release histamine...I'm thinking. Interesting. Dd has had her IgE tested, and it was normal. That was months ago. I wonder if things have changed.

This is more of an allergy question than a PANDAS one, but I know that many PANDAS kids have been through allergy tests, so I'm hoping someone may be able to weigh in on this. Dd6 had a skin prick test today for 8 foods. Along with that they did an extra prick of histamine, which is the positive control prick. Everyone should have a reaction to the histamine. Well dd did not have a reaction to it. They even repeated and did a 2nd histamine prick, which also had no reaction. They said this normally only happens when a child is on an oral antihistamine, which dd does NOT take. She does take a nasal spray antihistamine, but they said that would not affect the test. They could not explain why she had no reaction, but said her lack of reaction meant that the rest of the test did not "count". Anyone ever had no reaction to the histamine prick? I'm trying to find out what this means.

Not sure if you're referring to the NetiPot. Dd6 uses that and it is AWESOME!! This being said, it was not an adequate replacement for Zyrtec. We replaced Zyrtec this year with 2 nasal sprays (Patanase, which is an antihistamine, and Veramyst, which is a steroid), and she's been doing way better than when just on Zyrtec.

Do you vote on Facebook or on the link provided?

Are you giving the Azith. 2x daily? You could simplify thing by giving the full daily dose at once (eg give both doses at breakfast)...then give the probiotics after school and/or at dinnertime. Most of us take Azith. 1x daily. Also, does your dd bring her own lunch or snack? You could put some pudding or yogurt in her lunch and mix the probiotic into that...I don't think it has much of a taste. Yes, we are doing 200 mg of Azith 2 times a day. Is taking 400 mg 1xday safe for her size? She's 48 lbs. She doesn't bring her own food. Snacks and lunch are cooked and served there.

Any idea if Johnson & Johnson refunds you for these items?

We've been using Culturelle Kids with dd6. How can you tell if it's effective or not? Is there an immediate result in temper after ingesting it? I really don't know much about the various antibiotics, but want to be sure I'm giving an adequate amount, at the right times. Unfortunately, I've been giving her the Culturelle Kids at breakfast & dinner...the same time she takes her Azith. Apparently, this is not effective. I'm giong to have to work something out with her daycare/kindergarten as there are not enough hours that she's home on weekdays for me to give the abx and wait 2-3 hours to give the probiotic. Can anyone recommend what dose & brand is most effective?

Dd6 did a 5 day prednisone burst 4/21/10-4/25/10, during which time we did saw very minimal improvement in her tics and her mood was TERRIBLE. However, 2 days after ending the burst we saw a fairly dramatic improvement, which has continued to today. Her mood is fantastic, many fears seem to be gone, and her tics are at an all time low. They're not gone, but SOOOOO much better. She's having tic free periods of 30+ minutes at times. My understanding was that any affect from a prednisone burst will go away and PANDAS symptoms usually come back with a vengence. Is this true in all cases? Do they come back as quick as they went away or slowly?

How do I go about getting an IGENEX test? And what is the cost?

Interesting...the odd thing is that I only had ds tested b/c we just recently found out that dd6 has PANDAS. She's had a series of health issues this past year, including sudden onset of tics which led us down the PANDAS path. CamK results for her came back at 150 this week. So, now that we feel pretty certain that it is PANDAS she has, we've started to put more weight on our recent observations of ds4. In the past few months he's had an increase in rage, screaming fits, developed nightime fears, complained of seeing flashing lights on 3 ocassions, and according to dh seems "twitchy". Anyway, ds had his 4 yr check up last week, and I said I wanted ALL of the blood tests that dd has had in recent months, done on him...one of which was the Western Lyme Blot. So, I really didn't expect to see anything come back on him. Dd didn't have the ELISA test, but her Western Blot showed Band 41 IgM & IgG positive, and Band 66 IgG positive. Are these "sympotms" we're seeing in ds at all consistent with Lyme? We've already found an ILADS doctor in the state who we've planned to go see for dd, so I can easily set up an appt for ds at the same time.

My ds4 recently tested positive on the ELISA Lyme test, but negative on all bands on the the Western Blot. The doctor said there are false positives on the ELISA test. While I agree that having all negative bands on the Western Blot answers the Lyme question, I'm curious what would make his ELISA test positive. Anyone know exactly what the ELISA test looks at? Could it be an indicator or another problem, or is "false positive" a good enough answer.

I replied to this thread a month ago saying that dd6 had mildly high Lymphocytes at 59, with the normal range listed as 30-50. However, I was jut looking at the results again, and it appears that she also had high Eosinophils at 7, with the range being 0-5, and her Neutrophils were low at 29, with the range being 36-60. She was in a major PANDAS exacerbation at the time, with 11 cases of strep in her classroom, but no illness herself that we were aware of. The troubling part of all of this is that at the time of the CBC test, the doctor said everything was normal. Had I not requested the paper copy, I never would have seen these levels were outside of the stated ranges. Why do doctors make no big deal of levels slightly outside the range? Is there a % they like to see it out of the range before calling it abnormal? What is interesting to me is the Eosinophil level being high as dd was just dx with Eosinophilic Esophagitis 2 weeks ago during an endoscopy (a prodecure her pediatrician told us she didn't need). Not sure what any of this means....but I just got a call from the Dr regarding my ds4 CBC blood work. (I am mildly concerned that he's showing some PANDAS symptoms that dd showed for years before we knew what was going on with her.) I haven't seen the paper copy yet, but they said the only thing slightly out of range was that his Eosinophil level was a little high. He has no known allergies.

Thanks for the clarification. I'll try having her squeeze my fingers. What she's doing is definitely noticable.

Dd started a new tic the other day where she squeezes her right hand over and over. I recorded it on the camcorder last night, so I could watch it in slow motion and see exactly what she's doing. The best I can describe is that she puts her hand in a fist with the tip of her thumb on the side of her pointer finger knuckle. While in this position, she presses with her thumb tip onto her knuckle over and over...usually between 5-10 times. Then she puts her hand down. Does this sound like the milk-maid grip? Does this tic have more significance than other tics? Just trying to determine if I should be more concerned about this tic than her other ones. I should mention that she has done this to the point that her thumb is now hurting.

What kills me is b/c they didn't actually swab dd, the pediatrician suggested we still give her the H1N1 vaccine...and we did!!! Granted, her tic cough had already started, but still... I've always been pro-vaccines. And now, since PANDAS, I'm paranoid of everything. I'm even starting to question whether my other child may have PANDAS. Dh is sure he does, and day by day I'm seeing more and more things that make me think he does. I actually declined his 4 year vaccinations at his well child visit last week. It kills me to think that I may have 2 with PANDAS!!

Just wondering how many PANDAS kids contracted H1N1 in the fall of 2009, and had an onset or exacerbation follow? Since learning of PANDAS, and looking at dd's history of peri-anal strep, I truly believe that dd's first onset of PANDAS was in 2005, when she was 18 months old. She had a DRAMATIC personality change, that far exceeded any sort of "terrible-two" behavior. Symptoms at that time were mostly rage, extreme defiance & OCD, but I didn't recognize them for what they were. Anyway, in 2008 dd had her tonsils removed and within a month was a new child. Happy, cuddly, sweet...I was thrilled. It's wasn't until 2009 that things went drastically "wrong". In July 2009 she was dx with peri-anal strep, which was treated and went away. In Sept. peri-anal strep returned & she had strep throat at the same time. She was treated and it went away. Within weeks she came down with "presumed" H1N1 (they didn't test, but she had all the symptoms). After a week she fully recovered. 8 days later she had a 103-104 fever, with no other symptoms, that lasted 5 days. Within days of that ending, she began a tic-cough that she literally did over 10000 times a day (went away with sleep). It was this tic cough, that led me to PANDAS. We had 2 courses of abx that improved the tic cough...the 2nd course, in Jan 2010, made it go away completely. Then in Feb 2010, while there were 11 cases of strep throat in her kindergarten, the motor tics started...and we've been in tic ###### ever since. Just got her CaM K score back at 150, so I do feel it's PANDAS. Anyway, I'm noticing that in many posts people talk about their child having H1N1 last fall. Just curious how many? Of all of the kids in my dd's daycare, all of my friends kids and my family, only 1 of my nephews got H1N1. Yet, it seems that a disproportionate amount of PANDAS kids got it. Not sure if that's b/c many of these kids, including mine, are immune deficient, or if something in H1N1 triggered PANDAS to emerge or resurface.

We just had our daughter's CaM KII done, while on Azithromycin and symptoms around a 5 on a scale of 1-10, and hers came back at 150.

I have heard of the milk maid grip, and was floored when I say my daughter doing this with her hand yesterday. This is why I asked her why she was doing it (normally I try to just observe her tics and not comment on them to her, as I feel that makes her anxious). I found her answer to be odd, as she's never talked about "checking" things before. Yesterday was an odd day all around. Soon after the start of her hand TIC, she had an absolute crisis at dinner after she rolled a burrito wrong. She was furious that it wasn't "perfect" and then started bawling saying that "her brain was telling her to do bad things. It wanted her to throw her whole plate on the ground, but she didn't want to because burritos are her favorite dinner." It took a long time to calm her down, but when she did calm, her mood was fantastic, and tics were almost non-existent. --I'm so confused...and worried. If you have a video of the milk maid grip, I'd love to see it so I can look for similarities.