amyjoy

Hey the timing couldn't be better...we are also going in april during spring break. i wonder if ds would feel ok about using this disability to help him like this, or if it would feel too wierd for him?

sorry for multi-answer - my computer had some connectivity problem

that was really intuitive of you to ask to have them tested in the first place. i'm sure there are all kinds of carriers and infections out there in the schools, and its a dilemma to know what to do. the people who suffer are the kids with weak or overloaded immune systems, like our kids, who are extra susceptible. that doctor's advice in he column was so vague and non-committal. It was like a circular nothing of saying that its controversial at best, in other words, he had no idea how to respond. it falls through the cracks of knowledge in the medical system.

that was really intuitive of you to ask to have them tested in the first place. i'm sure there are all kinds of carriers and infections out there in the schools, and its a dilemma to know what to do. the people who suffer are the kids with weak or overloaded immune systems, like our kids, who are extra susceptible. that doctor's advice in he column was so vague and non-committal. It was like a circular nothing of saying that its controversial at best, in other words, he had no idea how to respond. it falls through the cracks of knowledge in the medical system.

that was really intuitive of you to ask to have them tested in the first place. i'm sure there are all kinds of carriers and infections out there in the schools, and its a dilemma to know what to do. the people who suffer are the kids with weak or overloaded immune systems, like our kids, who are extra susceptible. that doctor's advice in he column was so vague and non-committal. It was like a circular nothing of saying that its controversial at best, in other words, he had no idea how to respond. it falls through the cracks of knowledge in the medical system.

That is so awesome, peg, i'm happy for you. It's so crazy that we are put in the place of having to make these decisions for our kids...but your intuition is good and you're doing a great job managing all that stuff, regardless of how scary it feels to make a change like that.

my DS14 has had some episodes like this. it starts with a full feeling in the stomach and then he feels like he can't get a deep breath. he had a few minor ones that always went away after we went to the cranial adjustment person. Until last month. We went to the cranial person twice, not better. so we went to MD, he thought maybe it was hiatal syndrome, so we saw an osteo person 3 times to do some kind of stomach / hyoid maneuver that did nothing for more than 10 minutes, so then we tried acupuncture. All of this within 2 weeks, because the feeling of not being able to get a deep breath starting to make him so anxious, and then i got so anxious and it was nasty there for several days, i didn't know what to do. so finally i had an idea, that maybe whatever it is, whatever started it, maybe one of the reasons that it got so bad was because the anxiety skyrocketed, plus you know, after being sick for so long, maybe he was so overfocusing on the symptom. i guess i was desperate, but anyway, i ended up bringing him to see a somatic therapist who also does some clinical hypnotherapy, and after one session about a month ago, the symptoms were at least 50% gone. by the second session, they were 90% gone, and my son has learned some good skills about finding his "healing place" - heck he had no idea he had a healing place, to him all he had was sick places. So he's had 3 sessions and loves it, all the breathing thing is completely gone, and now he's telling me he wants me to try going so i can find my own healing place. well, if i can ever afford to go myself, i probably would. don't know if this helps at all.

ps. the thing to remember is that everyone is different, so while each kid has their own baseline of pandas-related symptoms, the underlying "metabolic landscape" is unique. for example, my son has celiac, and methylation problems, both of which result in additional inflammation on top the pandas inflammation, so whatever helps that part may reduce some of the tics which are inflammatory. he also has structural/cranial issues that add, so when he has an exacerbation, maybe its the pandas, but maybe its the other stuff on top of it. so we of course run the whole circuit, and sometimes the cranial helps this time, and another time, it doesn't, its liver stuff. oy vay.

we have used acupuncture for DS14 on and off, and it does help for some things. Not sure it helped with tics or ocd, though. well, looking back, there have been a couple of times that between acupuncture and an herbal formula called coptis purge heat, it actually did help some tics at night and it helped sleep alot, also helped skin and sinus. i still use that formula when he gets rash-y, or really rattled, a something in the toolkit.

YES in addition to the avipaxin (i wrote on your other post which i highly reco) using the ibuprofen to max dose for her weight might help, and also, we use skullcap for sedation/calming support. I get it in a tincture at the health food store, does not interfere with meds, can work right away, like the valerian someone reco'd. i hope you are finding some things to calm her...and take some yourself.

Cool, thanks and happy VDay to you and your family:)

so, just asking, as i have never heard of this and just looked it up online. if a mucocele is formed due to chronic infection in the sinus, and say this chronic infection is strep but is now bound up or enclosed in mucous, is this the same as biofilm? If so, i imagine it would create the same difficulties in diagnosing and the need for biofilm protocol to treat the infection within the mucocele? (using enzymes or sodium edta along with the abx?) would love to know if you have had any experience with this kind of treatment. thanks.

Hi Wilma question - is it c. diff that was diagnosed on a stool test? or clostridia byproducts from a urinary test, like the Organix profile?

Just want to offer, in the event your daughter is experiencing a deep inflammatory response or cytokine storm is brewing, you can try the avipaxin by neuroscience. it helped ds14 so so much with the worst times of ocd and tics, just give during the day, though, not at night.

hi norcalmom funny it did not occur to me that post ivig nausea and vomiting could be a herx, i thought it was from the med itself, or maybe all that protein in the blood stream or i don't know exactly...but it didn't occur to me it could be a herx reaction. my son did have a day of wicked vomiting after ivig, and so did a couple of other kids who had ivig in our practice, and i tell people that its common enough after ivig to just expect it and be surprised / happy if it doesn't happen. 20% sounds like a good number from our experience, post ivig. vomiting after the antibiotics switch, that isn't something i have seen much in our practice or at all with my son, so i can't be helpful there. it just makes me wonder if its a sign your child isn't tolerating the current antibiotic but i'm sure someone on the forum will have words of wisdom for you. good luck with it.

Well said, Tenacity. I had asked our Kaiser doc at least a year before dr. schweig (not Kaiser) diagnosed DS with PANDAS, to please check for PANDAS. They said that is so rare we don't even check for it. And after going outside of Kaiser for all the testing, and diagnosing, when it was so obvious that DS has had PANDAS for 4 years and not a sudden onset of TS and Asbergers and Anxiety and personality problems, I took all that information back to Kaiser pediatrician, with articles and information. And she said- wow, if this is true, i think i have a couple of other patients with PANDAS as well - but we don't treat that here and there is nothing I can do to help your son. So maybe that's why they don't test for it because if they do, then they have to figure out how to treat it and they can't be bothered. Its much easier for them to keep treating what they already know how to treat.

Just a note for all northern CA people - we are here and Dr. Schweig is LLMD and we are talking with and seeing and treating quite a number of PANDAS kids. We do comprehensive testing (emphasis on comprehensive) for both PANDAS as well as predisposing conditions and co-infections. Anyway, I have this amazing opportunity as a PANDAS mom, to be a PANDAS provider. The combo of insights from my own child and the many I talk with / work with, its so intense and amazing. I love it, I feel blessed to talk with a number of extraordinary moms and kids, and to offer excellent, integrative and affordable medical care for PANDAS. If you're interested feel free to PM me. Lots of luck out there.

There are a number of herbal cox-II inhibitors that can work deeply enough for some kids as an anti=inflammatory (everyone is different) but worth a try. My favorite currently is Inflamaway by Natura, it really helps with tic/anxiety flares for my DS. I like that it also enhances overall health, immune and liver function instead of causing the side effects that celebrex and other nsaids can cause.

In our office, we routinely test all family members for strep who have not been tested yet. have found one mom with positive strep in the throat, no symptoms. one dad with high aso, no symptoms.

oh steph, i'm so sorry. talk about behavioral regression - sounds like your husband hit that wall himself. who is really prepared for living with this level of stress, to have such good coping and communication and self care strategies to always stay on the high road?? its super human and pretty insane, really. my husband was never willing to be on the team, it was somehow my fault and DS's fault. actually he was jealous of the attention i gave to DS, i was always in the middle of that one. that was more exhausting than the pandas, i think. so i finally had to leave that man. isn't it so great that you have this forum, and we can talk about stuff like this? sounds like you all could use some rest. blessings to you amy

We never checked our son, but since we're starting to see a number of PANDAS kids in our office, we can start testing them and see! its a test we can run in the office, or since they end up going to the lab anyway, we can just add a simple urinalysis to find out. if there is any consistent positive, i'll let you all know!! amy

Xymogen makes an excellent, concentrated IgG product from colostrum for anyone who is interested. It is also in their protein I-5 drink, which also has alot of gut support in it. High grade olostrum does have some good affects on the immune system of the gut. We used their IgG product for some time, before we were able to get the ivig for my son, and it really didn't do anything in terms of diminishing symptoms, so we stopped using it as we were pouring so many supplements down that kid. However, the IVIG did amazing for his symptoms, tics down within one week. So we figured for our situation, the oral IgG was like, spit in a bucket, just way too little for pandas symptoms, but maybe helpful in general.

My son is 14 and takes zithro 500mg three times a week. Three times a week is more common for prophylaxis than twice a week, with zithro. sometimes i let him go a week without it, and give him olive leaf extract. i just do this because he has celiac and is still healing the gut tissues, so every now and then i try to give him a little break.

the typical strep "titers" (ASO / anti-dnase are antibody titers, the level of the body response to the strep, not the actual level of strep in the body. so those can be confusing, because like jag10 said above, there can be reasons the body cannot mount a response to the strep. Maybe the immune system has a primary immune deficiency, or has become weakened due to other infections or immune issues (in my son's case it was probably due to the severe celiac which is also autoimmune). So you can have a negative ASO titer. Is that the only symptom he has, joint pain? it wouldn't hurt anyone to do a trial of antibiotics if you sincerely suspect strep, while looking at other immune markers. just fyi, not that this necessarily relates to you, but at age 7 my son developed severe heel pain, and leg pain, which the osteo dr insisted was the osgood syndrome. it was very painful and limiting for several year, until about a year ago when we finally discovered he has celiac and went off of gluten - 2 weeks later he was literally 100% pain free for the first time he could even remember (he was 13 when we discovered the celiac and the pandas as well). My point is that, doctors are not always right about such things. If you have an intuitive sense, follow it through. Good luck with that. amy