Tenacity

Essentially the same dynamic at my house. The terrific strain put on us by our child's illness has led to a new and extreme version of "division of labor" in the nuclear family. I have become a self-made 24-7 nurse, secretary, and PANDAS scholar. My husband works even longer hours at the office. It's really hard. But I have often thought, what on earth would I do if I didn't have my husband?! Who would provide for our family, with me trapped at home and unable to go to work? Who would listen to me -- whether I'm giving a mini-lecture on the neuroscience of PANDAS or crying and yelling my head off -- and help me sort things out? Who would come to meetings in a suit and tie and stand up for our child, so that misguided medical or educational professionals don't find it quite so easy to brush Mom off as a hysterical nitwit?... Thank God for good husbands! Tenacity

Fixit and dcmom are right. Changing ASO and Anti-DNase-B tests provide clues to the body's reaction to coming and going Strep infections. When paired up with coming and going PANDAS exacerbations, they indicate a possible association between Strep infection and PANDAS. However, a child can have high ASO and Anti-DNase-B titers and no PANDAS -- or, conversely, perfectly normal ASO and Anti-DNase B titers and severe PANDAS -- particularly if the child has been suffering from PANDAS for a long time. Strep (which causes the body to make anti-Strep antibodies) can set distinct autoimmune processess (involving anti-neuronal antibodies) in motion, but these autoimmune processes then take on a life independent of Strep, and other things (allergies, colds, vaccinations) may then prompt the autoimmune processes to wreak havoc in the brain. Unfortunately, there seem to be lots of doctors out there -- even some doctors who claim to be PANDAS experts -- who don't understand this. If you have a child with PANDAS, and your doctor doesn't get this distinction and you are unable to enlighten him/her -- my advice is: MOVE ON!

PANDAS parents understand the simple fact that the brain is a part of the body -- and therefore physically vulnerable to all kinds of injury and illness, just like the rest of the body. Society at large -- and this often includes friends and family, and even pediatric doctors with "brain" specialties in psychiatry and neurology -- just hasn't caught on yet. People accept that a child might need eye glasses, hearing aids, inhalers, insulin injections, wheel chairs, heart surgery, you name it -- but medical help for a kid with a disease of the brain, they can't seem to grasp. It is automatically assumed that "good" people should be able to control their brains. The reality is that our brains control us, and when they get sick, it is a frightening and dangerous business -- particularly since such illness is typically misinterpreted as "bad behavior," which is met with blame and rejection instead of understanding and assistance. My experiences as the mother of a child suffering from a serious and debilitating brain disease have hurt me, enraged me, exhausted me, and scared me nearly to death -- but at the same time, they have intensified the love and the learning in my life. I dedicate myself to that love and learning -- and hope and pray with all my might that my child will get well. (And if I should take a little pleasure some day in a dose of vindication along with the healing -- well, surely there are worse sins!... Sometimes survival is the best revenge.)

A relevant snippet from an earlier exchange on this forum -- copied and pasted: smartyjones Sep 28 2009, 06:25 PM Post #3 I have a story to relate but please excuse that I heard it a while ago and won't get it right but can convey the jist. My ped told me this in the spring - he told it as an example that he didn't think my 5 year old had strep lurking in his body b/c we'd treated strongly with abx and he hasn't had invasive treatments to breed strep - but the story is quite interesting. He saw a college age girl (I don't think she had previously been his patient) that had previously been beautiful, motivated, healthy. She'd started having trouble in school, academically, socially, feeling badly, losing motivation, looking bad. She eventually dropped out of college. Her parents were wealthy and had taken her to many doctors who couldn't figure out what was wrong. When he saw her, he ran strep titers. They were high. From there, they figured out that when she had previously had some dental work, some thing had been done incompletely or improperly and she had a strep infection in her gums. They corrected the dental issue, treated the strep and she was back to her previous self. Not sure if that helps you but I think it's an interesting story.

Just reposting this question at the end of the thread, in case it got lost in the middle... Buster -- Have you and your wife decided what to do next to try to help your daughter, since the benefits of IVIG were undone by another illness? Will you take her for a second round of IVIG? Tenacity

Buster -- Like Joan, I wonder what you plan to do next. Will you take your daughter for another IVIG treatment? Tenacity

Yes -- lots of tape, strings, odds and ends... My son is artistic, and we used to chalk all this up to creativity. However, over time, the behavior took on stranger and more troubling forms, and it became apparent that it was not simply a product of creative inspiration...

My understanding is that, while vaccinations do not cause PANDAS, they most certainly can exacerbate it and trigger secondary (tertiary, etc...) episodes. I have seen this in my own child, heard it from an expert PANDAS doctor, and read it in medical literature. I have been advised by this expert doctor not to have my sick child receive any more vaccinations, except for Tetanus, until adulthood. As for my second healthy child --I too am "gun-shy," as I suppose any parent in my position would be. But each child is unique, and it might just be more dangerous to deprive my second child of vaccinations than to administer them to him. My plan is to consult with the PANDAS expert about this question as well. I don't think there's a "one-size-fits-all" here. Tenacity

Virtually any single symptom might have any number of underlying causes, and the other folks who've responded to you have cited several possible causes of swallowing difficulties. I would not venture to suggest just what might underly your child's particular swallowing problems. But since pronounced swallowing problems have been a part of my own child's illness, I thought I'd throw my observations into the mix. After several years coping with what we were told was bipolar disorder, our son received a diagnosis of PANDAS after receiving an ordinary flu shot in September and being stricken shortly thereafter with a severe movement disorder. He suffered violent movement attacks -- which may or may not have been partial seizures -- during and after which he would suffer 2-3 hours of mouth and throat dysfunction: inability to move his mouth, speak, or swallow, and consequent drooling. He also suffered random intermittent periods of mouth/throat dysfunction, when he could not swallow at all or could swallow only with obvious straining and discomfort, or when he could not eat or could only handle soft foods. Sometimes he even manipulated his cheeks with his fingertips, as if he were trying manually to get his mouth to work. While I understand from my reading (including Dr. K's website) that swallowing problems in PANDAS kids are sometimes OCD symptoms, I understand also that they may sometimes constitute a type of movement disorder (I think this is what Fixit was driving at). Also, autoimmune disease in PANDAS kids may sometimes harm other parts of the brain besides the basal ganglia... which might account for certain odd symptoms. Of course, whatever the cause behind the symptom, I wish your child speedy recovery! Tenacity

Thank you, Nita. I am grateful for the first-hand hotel information. I see you are a new member of this forum yourself, looking for help for your own child. You are kind to respond to my inquiry. Tenacity

Dear Wendy, Thank you for the very helpful tips and the good wishes! Tenacity

Thank you very much! I'm delighted to receive my first reply to my first posting on this forum -- and to have found a contact in the Chicago area! We have been to the Hinsdale office once for consultation, and we understand that IVIG is administered at a surgical center in another location. But we have not yet learned -- or figured out -- all the details of our upcoming trip (i.e., how we're going to get there, where we'll stay, etc.). I will certainly call and see what I can learn from the receptionists, although I tried that the first go-round, and the person I spoke with was very nice, but had no advice. Sometimes locals know the least about such things, which is understandable. I'll seek you out again, if it turns out I need some more specific local guidance. Thanks for your kindness! Tenacity

I would think that Dr. K.'s office would have some recommendations, maybe even some special rates at local hotels or something. Which facility are you having the procedure done at? I know he has a couple of offices in the Chicago suburbs, but not sure where the IVIG is performed. If Dr. K.'s office doesn't have anything specifically to recommend, I can help you if you'll let me know exactly where you need to be. Even the suburbs can seem expansive when you're ferrying around a sick kid. Are you flying into O'Hare or driving in?

My son will soon be going to Chicago for his first IVIG treatment with Dr. K. We live far away, and he is very sick -- can't be touched without ensuing adventitious movements, can't speak... Do any of you have suggestions as to where we might stay?