peglem

Interesting...this is essentially what I've been doing with my daughter. (the P5P is in her SuperNuThera) Just prior to starting this, even with the melatonin, she was not only having great difficulty getting to sleep, she was not rested upon waking. So I think its improved the quality of her sleep as well.

But, all of your experiences and family experiences shape the family dynamics and who the individuals become. That's the nature of life. You are a product of your genes and your experiences in life. There is no way to know who you'd be right now had you not experienced PANDAS. You and your family would be different people, maybe better, maybe worse. The trick is to grow from every experience in a positive direction- and you seem to have a knack for doing that! A part of me just doesn't want to deal with PANDAS anymore, either!

I'm going to answer here, because I don't think my answer will offend anybody and anybody who is able to come here and read is miles ahead of my child in functioning. First of all, I've raised 3 "normal" children before my disabled one and I'd like to point out that parenting is a challenge-period. I can't say what I would have done if I'd known in advance that my fourth child would have the difficulties that she has. I would have had no idea what the blessings are, so would have only had the negatives in front of me. If I had it to do all over again, knowing what I know now, I wouldn't choose to not have my daughter. Its hard to explain. The challenges are often overwhelming and I've had to make great sacrifices-but this particular journey has strengthened my capacity to love and my ability to face adversity with courage and determination. My faith has also greatly increased. In my case, becoming a strong team for the good of our child has made our marriage better, but i know that's not always the case for others. That is probably largely dependent on the individual personalities in the marriage. I used to worry about what this kind of life was doing to my daughter's 3 older siblings because, truly our whole family has been formed and shaped by the needs of the youngest. But, what I see in their young adulthoods is that the struggles faced growing up with this have given them much the same gifts as it gave me. They have amazing compassion for others and are confident in their abilities to face and overcome adversity. For what its worth, I think your own experiences w/ PANDAS have made you uniquely qualified to be hugely successful raising a child, PANDAS or not.

We have this problem from time to time. Its a vicious cycle- the sleepier you get, the harder it is to resist the obsessive thoughts, which makes you sleepier. We were using a combo of valerian root and melatonin which worked wonderfully for awhile. But I noticed when we were having problems again, and ran out of valerian, that she did better w/o the valerian. Now we are giving zinc throughout the day and magnesium w/ melatonin at night and that is working fairly well. Also have increased B vitamins throughout the day (we use SuperNuThera). Nothing affects my child more than lack of sleep-she rapidly follows a downward spiral in mood and functioning.

We've had positive swabs while on abx.

Nope! I'm suspecting that my child has very low histamine levels...antihistamines make her crazy-even the ones that block receptors in the stomach to decrease acid. Lots of antihistamines out there, but the discovery that low histamine can cause health problems is relatively new and the realization that histamine is involved in so many body systems is new. I'm wondering if L-histidine (used by body to make histamine) would help. This article- I think I'm going to have to comb through it one section at a time and take notes to digest it.

Haven't read the whole thing- but very comprehensive! http://physrev.physiology.org/content/88/3/1183.full.pdf+html

An amoxicillan rash may indicate an infection w/ epstein-barr virus.

drug development: http://www.drugdiscoverytoday.com/view/9091/evotec-wins-h3-receptor-antagonist-programme-grant/

Here is a really great article on histamine in the CNS, which is where the H3 receptors are primarily found. http://molinterv.aspetjournals.org/content/6/2/77.full

I don't know what tests. I'll ask the pediatrician about it when we see him on the 22nd. It sounds like there are tests for serum histamine levels. But, it also looks like high brain histamine reduces peripheral histamine levels (neg. feedback loop?). I don't know- just started looking into this yesterday, after a couple of really bad days of raging and FU'd sleep when I gave Allie some zantac prescribed by her physician.

I don't think my daughter has had histamine levels checked, but I started reading stuff yesterday about histamine deficiency and, well...I think it may be a player for some of our kids- both deficiency and excessive histamine, as it has a regulatory role in the CNS and in immune function (and digestion and motor function as well). Here are some links to stuff I found interesting: http://www.jimmunol.org/content/176/1/17.full http://en.wikipedia.org/wiki/Histamine_H3_receptor http://www.vivo.colostate.edu/hbooks/pathphys/endocrine/otherendo/histamine.html http://www.diagnose-me.com/cond/C376825.html http://www.ehow.com/facts_6466027_histamine-diseases.html http://biologyofkundalini.com/article.php?story=Histamine One of the things that got me started looking at this is that my daughter is IgE deficient (and thus may have problems accessing histamine stored in mast cells) and seems to be having a negative reaction to zantac and prilosec, both of which are H2 blockers. She also has a rage reaction to benedril (diphenhydramine). Zantac and prilosec both cause her to have problems sleeping.

It might be helpful if Dr.B's office could fax or email the lab results to you. Knowing what has been tested and what the results are before the next appointment will give you a chance to "digest" the info and learn about the implications...leading to more questions!

I also fear that doctors will think kids outgrow it and limit treatment. I have heard from several mainstream doctors that PANDAS is "self limiting" and that we should just use psych meds alone to alleviate symptoms until he outgrows it or overcomes an exacerbation. While I have no doubt that some children have had only one or two exacerbations, I don't think we want to send a message that this is a disorder that can be outgrown if left untreated. Furthermore I think we are coming to understand (as EA Mom has said) that oftentimes our kids DO NOT return to their pre-exacerbation baseline and there is a gradual loss of function with each exacerbation. I really think we need to hope for the best (that our own children will not continue to battle this for the rest of their lives), but prepare for the worst - by treating infections and autoimmune dysfunction aggressively and teaching our children how to recognize PANDAS symptoms to get biological help when needed, as well as using CBT to cope with remaining symptoms. Bees - this is not to discredit what you have said in any way. I think you are saying the same thing in saying that some children will not go on to continue to have exacerbations as adults. ... but recognizing that not all children will be so fortunate. Further- when the children do get to be adults, we want the adult specialists to understand and treat the disorder as well. We're very close to legal adulthood. Her pediatrician has agreed to follow her to age 21, but what will we do for specialists? In a way it will be great to get away from PCH, but as difficult as it is to get pediatric specialists onboard, I can only imagine the nightmare I'm facing in trying to get the adult medical community to acknowledge my child needs their help.

Wow! You get your kids in bed by 8?!!

You have me literally laughing out loud! I don't know if there are long-term side effects either and I hope there are not. I don't think they could be any worse than the long-term side effects of ritalin, strattera, or SSRIs- all of which my son would need in substantial doses if he did not get sleep or if he spent the night worrying about someone breaking in and hurting his family. The idea that we may be making some neuroplastic changes is interesting, though, and I am wondering if I should try to switch him at some point to valerian root or 5 htp for a while... any thoughts? Been using melatonin for years and years- 10? When my daughter has those ever-so-elusive good periods, I can reduce the melatonin down to 1.5mg from 3mg. I just think that a lack of sleep will have a greater negative impact on her health than melatonin does. For the last couple of years we've also been giving valerian root. I can't be sure, but I think the valerian was causing some problems- we're off it for now. But I think it may have contributed to the problems my daughter was having with muscle cramps and spasms in her hands- hard to be sure.

Wikipedia gives a pretty good definition here: http://en.wikipedia.org/wiki/Herxheimer_reaction

I don't know that anyone's proposing any theory. I think parents coming to the ACN forums can have kids who have a set of symptoms that are infection triggered. Those symptoms overlap quite a bit, particularly if the lyme comes with bartonella or is neuro-lyme. I personally think a child could have a tick-borne illness, Pandas, both or neither (in that there could be other infections or issues that need to be explored beyond bacterias). I don't think that getting Pandas means you can't also be bitten by an infected tick. I don't think having Pandas means you can't also be struggling with mold in your basement. You may have some outlier symptoms if you're dealing with more than one thing. They may have an amplified effect if they end up in the same body. But I don't know that they're automatically intertwined. That's why I like the term PANS. It recognizes that many infections can trigger neuropsych symptoms. It advocates for treatment of those infections. It, hopefully, starts to offer a variety of treatment options depending on the current trigger. I don't see any of it as either/or or chicken/egg. I see it as the recognition that mental illness is like any other physical illness in any other organ - something with a medical cause that deserves medical treatment, and will hopefully move us all beyond band-aids of symptom management and closer toward genuine health. I don't mean to speak for S&S - but I read her post as only an FYI that although an abnormal response to strep can be part of your history, if good health continues to elude your child, it's important to keep searching for that active trigger, even when, like her (and like me for many many months), you can't see how in the world something other than strep could be at play. That was very well said! I especially like the part I bolded!

Okay, this is just pure speculation on my part...I'm thinking of rheumatic heart disease, where the autoantibodies attack heart tissue. In that case, the autoantibodies (made to attach to strep antigens)attach to cells in heart valve tissue and mark them for destruction, just like they mark the strep for destruction. But, once the infection is cleared and the antibodies are cleared, the body does not "see" that heart valve tissue as foreign and continue making antibodies to that tissue. What I think is that the antigens on the bacteria are not exactly the same as the heart valve antigens, but similar enough that the antibodies can attach. I think the PANDAS thing is similar-except, in this case the autoantibodies are not complexing with basal ganglia cells and marking them for destruction, but are triggering neuronal cell activity, generating false signalling. I don't think the immune system sees receptors on the basal ganglia as foreign. I think its a case of the antibodies to pathogens being similar enough to the substance that is supposed to trigger the cell. So, if the pathogen is gone and the antibodies to it have gone, autoimmunity stops. The body keeps copies of the antibodies, but they don't circulate until the immune system senses a threat (can be just exposure w/o actual infection)and starts producing the specific antibody in large quantities-to keep you from getting infected.

No- its the antineuronals attaching to receptors on the neurons that raises the CamKII activity. Remember, there is not MORE CamKII in the neurons w/ PANDAS, its just more active because of false signalling(from the antineuronals).

I think this is what you're looking for: http://www.latitudes.org/forums/index.php?showtopic=5023 It is linked in the helpful threads for PANDAS thread at the top of the forum page.

Do they (immunologists) have standard IgG levels for infants and toddlers? I wonder, too,if there are malfunctioning parts of the immune system that are not detectable with lab tests. Can they test how well the Tcells(?) that are supposed to clear autoantibodies are functioning? It just seems like there are so many components to the immune system that its too much to sort out.

Thanks for updating. Praying for you guys!

Have you looked into TSO at all? The clinical trial is actually for autism I believe? My daughter is only 16, the study is for adults: 18-40 yo. How much does this therapy cost out of pocket? I read your update and I'm glad its helped you feel so much better, but I can not imagine the absolute ###### of having my daughter's symptoms flare for 5 months straight...or actually, I can imagine it, having been there many times in the past.

Right there with ya, lady! Saw the rheumy this week, as suggested by our pediatrician (but at least ours is a gem!), because my daughter has been having problems with muscle cramps and spasms in her hands and wrists, which improved with a 5 day prednisone burst, rx'd by the pediatrician. That indicated to the ped that it was probably an autoimmune thing, hence the rheumy suggestion. Well, the rheumy said she didn't see any joint swelling (me neither-I don't think its arthritis and said so), so she is ordering an MRI of her hands and wrists, and if it doesn't show arthritis then it "behavioral." Really?!! My child wakes in the middle of the night screaming in pain with her fingers all contorted and its behavioral (psychiatric)??? I mentioned that and she said maybe she needs to go back to the PANDAS specialist. We saw the PANDAS specialist 18 months ago- traveled 5000 miles round trip to do so. The conclusion of the PANDAS specialist?- "Why isn't she being treated for this immune deficiency? Just because someone is developmentally delayed doesn't mean you shouldn't treat their medical problems." I'm not going back, but it looks like the rheumy is dumping us (she seemed so promising in March), unless the MRI shows arthritis-it won't. On the plus side- my daughter's hands seem to be doing better with TONS of magnesium and some potassium + NSAIDS. Or maybe that's not a plus, because it'd be nice to do the MRI when she is in a flare- maybe it would show SOMETHING!