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My daughter had a positive typhoid (!) titer of some sort after her IVIG-- it is really useless for many infectious type tests to draw after IVIG. (I still cannot figure out why the typhoid test was ordered ) It did make me take a second look at IVIG- it really made me realize that this is parts of other people in her now! Not that I would necessarily change things, but it does make you think.

I do not go to dr K, but I thought he did NOT work with ins. I thought everyone paid upfront and then asked for reimbursement themselves. This is again, from someone who is not a patient of his. However, what is the diagnosis your child was given- the code used for IVIG? I think Dr B might work with ins and some insurance also with Dr L (she uses a local hospital usually)

Were these drawn before second ivig? How far apart were ivig #1&2?

Dr L NBC4 DC

My daughter would wail and make sobbing noises, but no tears. I definitely related it to some kind of neurologic issue, like the inappropriate laughter she did and other strange things. I would not say that a lack of tears is a lack of emotion on your daughter's part. I think something makes it so they physically cannot cry. Probably makes no sense to the neurologists, but to this PANDAS mom, it does

YES! My daughter had this- she actually scratched through her skin on her shoulder blades. LLMD and one PANDAS doc (not one we see now) felt it was radiculopathy from her Lyme. It was horrible, horrific and maddening for her and us. She would scream for us to scratch her back and then crumple to the floor in pain as we scratched it. What finally helped her was Lyrica. After one or two nights, it eased immensely. She had suffered from this (it progressively got worse) since onset - or actually a few months before PANS. So almost 2 years of torture solved her by Lyrica. Just something to consider. The hypothesis was that her known tick-bite (years earlier, as a preschooler) had been on her back and perhaps the bacteria had done nerve damage there- as she also had specific areas on her feet and hands that also "itched" and they corresponded directly to the nerve that runs from the shoulder blade area. (or something like that:)

I think that is a really good point. It is possible to be alive these days, not under a rock and NOT pay a second of attention to the news.

bump

I think the specific reason this probiotic (BLIS K12) was chosen is that it is restore healthy flora to the mouth. Just like in the gut; lots of "good" bacteria can help protect against the "bad". What is supposed to be there may help keep GAS at bay! Glad Cultrelle works for your kids- at least that is convenient to get

EXCELLENT NEWS! We saw improvements from the 10 day- 2 week mark and it sounds like you are there. Keep it up! Let us know how things go. I think one of the most helpful pieces of advice any mom gave me regarding PANDAS-- was to measure week by week, not day by day. *that was from the great and wise sage, T.Mom*

double post, oops

YOU CRACK ME UP! I must go to sleep and now I can with a lighter heart. Thanks, Dawn!

I think laurenk is right! All "strep" is not GAS. This probiotic sounds like a good idea. So does the gallbladder flush but that's a different topic for different forum:) Thanks for showing this article, laurenk. I had never heard of this.

Obviously, there is nothing we can do. However, it could be a public health issue. We all care for the same reason we all respond to and try to help you, or anyone on here. Any of our kids could have been diagnosed with conversion disorder or worse and been left with no help at all. From what I have seen, the girls with their parents went to the media, looking for help. I came here for help and advice and I imagine every one with honest intentions on here did.

Our doc took 2 of our 3 girls off abx. The remaining one is on 250mg Zithro daily. Do not know why this is the case. In your case, with what you have seen evidenced by what helps, I would drop them. When our youngest has had flares- she has been put zithro & steroids twice and after a month she gets better and stays off. Last time was in Sept 2011. For a flare after pex for our oldest, she did the clindamycin/rifampin protocol and then when that was over- no other abx. Of course, she is not doing so great, but the abx really did not noticeably make a difference. I would give their bodies a rest and see what happens! Easy for me to say - I do not have to live with them

I will PM you. thanks so much for sharing about this

So glad to hear she is doing well. How did you get there?

How was your daughert diagnosed with oms without a neuroblastoma? Not questioning, just wondering ,as I feel I am dealing with more than pandas . the mom I met whose son had OMA from neuroblastoma asked if my child had ben checked for cancer. no one has- how would they know? Thanks for any info.

I would not call you mean, EAMOM , just balanced. That is has been evidenced in every single post I have read that you have written! (and I think I may have read them all Also, thank you for pointing out that misinformation about PANDAS (or anything) does nothing to help anyone. In fact, it may make other well-meaning people get a potential PANDAS diagnosis ignored. IF- for example- my family doctor knows nothing about PANDAS- and I go in there and say, "my kid has sudden onset OCD/tics and I think she has strep in her brain!"- I would be hustled out in a second. Strep in the brain? My kid would be dead or at least ICU-worthy. If the doc does not know and the parent goes in so badly misinformed, FORGET IT. We are a family of positive rapid and cultures and Negative ASO's..... and positive response to pex, IVIG and steroids! I do not see any evidence of vax causing this- my girls were affected at age 10 &1/2- normal shots for both, but only one had chicken pox shot (the other got the pox!) I will however definitely slow down and question the vaccinations of my littlest - especially after reading the article kim posted about anti-phospholipids and antibodies triggered by immunizations. Thanks, EAmom!

MomWithOCDSon... HOW DID YOU DO THIS??? DO TELL, DO TELL!

Paraneoplastic by definition means that there is a cancer in the body. I think the description of treatments fits many PANDAS cases, though, certainly. I imagine that there is an overlap of kids who are have PANS and may really have a paraneoplastic syndrome. Maybe the sickest kids on here, who get better and relapse, have more going on than meets the eye. In fact, when one of my daughters' had pex, I spent some time with a mom of a little boy who was being treated for a recurrence of cancer. He had a PANS episode, right as his cancer recurred, after a febrile illness. They determined it was not strep-caused. They could not find a direct cause, after testing for anti-NMDA-R and other known types of encephalitis. He was treated with IVIG or pex, I cannot remember- as we talked at length about both. His PANS symptoms resolved and now that sweet family is fighting something tougher than PANS. Thanks for mentioning this to the forum. I think it is something that parents should keep in mind as a possible diagnosis for kids presenting with severe PANS.

T.mom, it was last night. Dr drew, the harvard guy and bowcock. The dad was great. I was at work trying not to start cheering at the tv:) if his kid does not have pans- he could still be our spokesman!

I will PM you the name in VA & no, I am not going to go to FL for this! I just thought he seemed interesting.

There is a doctor in FL-- I think he has an autistic kid- Dr Bradstreet-- Melbourne, FL. I read a lot of stuff by and about him a while ago and I was very interested in him. We saw a integrative MD in no VA who was wonderful. Ins reimbursed for a portion of our visits, but some care (glutathione, some testing) was not covered at all.

Dr. Jennifer McVige from the Dent Neurologic Institute appeared on 'CBS This Morning' and stands by her Conversion Disorder diagnosis. She insisted the symptoms these students are showing are stress-related. "Somebody has either a lifetime of many stressors that build up, or one individual stressor and it kind of brings that out in a physical form," explained Dr. McVige. Maybe a lifetime of Group A Strep stressors add in some lyme or toxic waste... certainly could develop into something in my book!