pr40
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Posts posted by pr40
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p/p is moving slowly into the mainstream. while you wait for a specialist, there is a lot you can do. your PCP should run tests -- see pinned material for tests to be run. give your pcp NIH recommendation from this page https://www.pandasppn.org/
argue for PANS, not PANDAS, since PANDAS is stricly strep and PANS is everything.
get informed and teach your PCP
change diet. no sugar, as much organic as possible, perhaps gluten and dairy free.
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thanks to everyone who answered my previous thread on MMR and varicella vaccine busters. The best advice there, to my mind, is to check titers since these are buster vaccines and most kids may not need them.
Now a different question about different vaccines that are given at a different age. Our dd is 11 and PCP told us she'll need tdap (tetanus, pertussis, diptheria), menactra (bacterial mening), gardasil.
I am starting to do research on these and wanted to consult you all as well.
you give best advice -- thanks!
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sleepingdog, I think you did not read carefully enough the post you were reacting to. the post only reminds that most pandas drs treat pediatric patients until the age of 21. if you have information to the contrary, please, present it. Identify those PANDAS drs who also treat adults. That would be of great help to many.
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So, should we vaccinete or not? ds is due for a buster for mmr and varicella.
did you have any adverse effects if you did these?
any other advice is welcome.
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i can tell you of the case, a child of an orthodontist had braces, rather early, and then a year later developed PANDAS with anxiety as her main symptom.
perhaps, braces come at the age when pediatric (hormonal) part of the condition changes. or there is a change in the immune system.
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ask how he treats pandas. that should tell you everything. some drs treat pandas with ssri and CBT etc.
others with abx and IVIG.
ask also how many pandas patients he has seen.
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"I fully expect the behaviors to resurface once he is home."
After reading his case history, I too belive this to be the case. BUT you do have something to work with.
He seems to know how to control himself when he has to -- you could work on making that a habit. CBT might help in this case.
If it were my children, I would use the possibility of going back to the hospital as a stick.
I would also stay away from any psych drugs for as long as possible.
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we did it for about sex months for both kids. At first I thought we saw some improvment but then I wasn't sure. After we stopped it, there was no change. We are on regular fish oil since. Because of great price difference, I prefer the latter -- we make sure that it is purified of mercury.
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don't forget that there are two diagnosis, PANDAS and PANS. Pandas is giving way to PANS since there are many triggers of this psychiatric condition. Besides strep and lyme, you need to check, well, all possible bacterial infections including mycoplasma, others escape me at the moment.
mold can be your trigger as well as can be alergies.
that you have autoimminune conditions is an indication that your dd might, too.
Stanford will help you, apparently, if your child has standard presentation and your dd seems to have that. just insist that it was sudden which is the key word for them.
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you don't really need tests, but a diagnosis. find a dr willing to make an acceptable one. Some insurances, I heard, accept encephalitis. See if there are others – you can call your insurance and ask them.
good luck. keep us posted
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Thank you.
@pr40 I understand the principle of developing "acceptance" of your children and their conditions. That said, symptoms wax and wane. There are times, however brief, that the sun shines so brightly and give us hope that that is truly normal. Perhaps.
I have read varying protocols for mycoplasma eradication ranging from days to months and with different abx. Why minocycline?
@llm Your story was fascinating but I am glad it worked out for you. So I think that is a great suggestion to pursue. I read up The kids are home schooled - I dont know how they would handle a public or private school. We moved into our current home as renters about 1 year ago, and it was the fall of last year that brought on the worst PANDAS flare. Again this wasn't immediate, but perhaps with fall rains or usage of water in the house, it produced enough moisture. There are a couple of known mold sources (e.g. gray water drain for laundry in basement) but I do not consider them major. We also live in mixed farmland and woodland, but there are a lot of dead and rotting trees around. Our old house had one mold area in bathroom (leaking toilet) but with remodeling was replaced, however the basement had a musty smell but no know mold we could see.
I have read varying protocols for mycoplasma eradication ranging from days to months and with different abx. Why minocycline?
bc mycoplasma is like a virus in that it does not have a cell membrane. It was recommended on one of the sites related to the Gulf vets. also, minocycle seems to be a very speciall abx -- here is one site that describes its neuroprotictive properties, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3171989/
I believe in trying and reassessing after a month. so far, no herxing or anything else. she is on a very low dose, 50mg x 1.
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science seems to be advancing fast in undersanting auto-immune conditions. here are three articles I found today, both very relevant for our kids
http://www.medicalnewstoday.com/articles/295135.php
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indeed, inflammation. there is no cure for padas. IVIG is the treatment that is cure for some.
long term abx, and combo, works for some. lowering inflammation in general helps a lot.
i hope you get to see a dr soon. there are several mentioned on older posts. do a serach of the archive. do a google search for a dr in ny area that deals with autoimmune stuff. there are many of them.
one more thing, you'll be your most imporant dr. so, get educated. read this forum, read sources recommended in this forum.
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please, read the pinned materials. they'll tell you what tests you can do. but pandas and pans are clinical diagnosis which means that they are diagnosed based on symptoms, not tests as there isn't one that can prove it or disprove it. you have a part of the symptoms and need to ask yourself if these symptoms were in any way related to infections. did you have a lot of strep? did these symptoms start after a major episode with strep, mycoplasma (pneumonia), or another bacterium, even lyme?
also, do your symptoms go down when you take ibuprofen? and how about abx? any change?
also, do you have an autoimmune disease? for instance, alergies?
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it's like you are describing our kids except for pica. recent blood test came with mycoplasma IGG in the indeterminate range.
we are waiting to hear from dr.
I decided to start giving dd minocycline small does, 50mg x1 for a month.
ds is already on zythro.
Other than that, I am trying to tell myself that this is as good as it will get and from now on it is CBT.
after all, they do have some energy to be able to play sports.
My understanding is that the issues they have are related to their immune system and until we know better how those work, we don't really have a clear next step. what is your response to your question?
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need to get him on abx asap. convince local pedi to prescribe it while you wait to see a specialist.
show them this site, https://www.pandasppn.org/
you can pm me and/or call.
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look at the archive, there were several great threads on the issue. I think I remember that you need to figure out your way of dealing but the besics are the balance btw. A) there is no disciplining during the flare up and
you cannot let behavior go unchecked. timeouts, relaxing in the room, is what we try. then, there is also punishment and revard, as mayzoo does, with watching and other privilidges. -
here is yet another recent finding of the connection. this one is about the parasite cats carry and, on the other hand, schizophrenia and bi-polar disorder.
http://www.medicalnewstoday.com/articles/295012.php
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in your place, I would do what your headline suggests (augmenting, zythro is a usual combo) WHILE also trying to find a Pandas dr. I would also try to go back to the same or different local pedi and ask for comprehensive tests of titers for infections, including IGENEX lyme test.
is celiac possible? do autoimmune conditions run in your family?
Ibuprofen may be of some (little) help.
good luck.
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pans is a clinical diagnosis and an autoimmune condition. there are some tests under the pinned materials, including possibel triggers like mycoplasma or lyme. there are also tests of the immune system like cunningham's.
but you do not predominantly rely on the test for diagnosis but on symptoms. tests are there to help you figure out triggers. if psychiatric and behavior symptoms can be related to infection (and there are other obvious sign of infection), then your child is diagnosed with pans. that's all you need for diagnosis.
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but strep is not the cause of pandas. pandas is an autoimmune condition. getting rid of infection is only one thing you need to do. many kids here are triggered by various triggers, hence PANS which is beginning to replace PANDAS diagnosis.
for your theory to work, your kid would have to have only strep as a trigger.
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if she was diagnosed with pandas, she should have been put on abx. that's standard protocol. ask why she wasn't.
ask also, why dr thinks pandas will go away after tonsilectomy? (She may be in for a Nobel prize, if she knows what she is talking about)
Melmix gives an example of improvement BUT in the example how can we tell if it is tonsilectomy or abx?
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on the psychiatric medication: yes, 23andMe results can specficically help you determine which kind is more likely to be effective but only IF you have specific genetic mutations.
on OCD -- well, I don't know that there are OCD genes as of yet. Perhaps when they discover those in the distant future. as LLM suggested, for the time being, help can be indirect via improved methylation, lowered inflammation.
i think it is increadibly useful info relative to cost even if you will not have direct ways of employing it.
you cannot let behavior go unchecked. timeouts, relaxing in the room, is what we try. then, there is also punishment and revard, as mayzoo does, with watching and other privilidges.
Dr. Latimer Vs. Dr. Kyle Williams
in PANS / PANDAS (Lyme included)
Posted
we are with drs P and W. One note of caution, as far as I know, they are reluctant to do IVIG.