peglem

Here's what happened w/ my newborn grandson: At 2 days old he was given IV abx for an umbilical cord infection, then a course of oral amox. When my daughter asked about probiotics in the hospital, they told her not to worry unless he got bad diarrhea. (ignorant!) Anyway, she was breast feeding, but he seemed to be hungry all the time and very fussy. He was staring at lights and had dilated pupils and was not looking at caregiver faces. I was terrified! (PTSD) So my grdson has the same pediatrician as my PANDAS daughter, THANK GOD! He rx'd both probiotics and boulardii and recommended a formula (pricy) that is easy to digest. He said what happened w/ his own son and his wife is that his wife had leaky gut (I think she has celiacs) and so the protein in her breast milk was too large for his son to absorb through his own gut (same w/ regular baby formula)... Anyway, long story short- my grandson turned around within 1 day of the new formula and probiotics. My daughter pumped her milk so she wouldn't lose it, but whenever she tried breastfeeding, he'd start w/ the fussiness and reverting to the same problems. So she decided to stop breast feeding and just go with the formula. I wonder if my daughter has some underlying health issue that is transmitted through her breast milk. So all that to say...it couldn't hurt to try some probiotics for your baby. Also, you might want to supplement yourself w/ B12 and folic acid (to increase it in your breast milk) and see if that helps with the seizury looking stuff. Even if there is nothing wrong- these things will do no harm at all, so you've got nothing to lose.

For us, it was a hindsight realization/speculation. Sensory and eating issues, withdrawing- generally autistic like stuff- not interactive or babbling, eating issues- Can an infant be anorexic? Sleep issues, huge huge sleep issues-like an infant that almost never sleeps...but would "switch off" into sleep w/ sensory overload. Weird fixations/fears- lights. The thing is, a lot of it is normal stuff for infants, but the intensity was so exaggerated... It was so long ago and we've been through so much, its hard to remember, but if you have anything specific that you're concerned about, let me know- it may jog my memory.

I think most, if not all of us, recognize in hindsight that our children had mild episodes before the big kahuna hit. And frequently, with treatment we find that flares are less severe.

In my case of a PANDAS child w/ low titers, we had many. many positive strep swabs.

Well, not the ASO and AntiDnase titers- but other antibodies to strep (or some other infection). Also, some abx have properties other than being antimicrobial- anything anti-inflammatory would help and some have immune modulating properties and it seems like I remember that some abx even increases serotonin.

Whoa, I would think ethically, they'd have to tell you if there is something wrong.

IEPs are good for 1 year from the time they were created, but can be amended at anytime.

Generally, PANDAS will fall under the OHI (other health impaired) category for services. You, as a parent can request an evaluation for sped services. For information on your rights, check out wrightslaw.com. It may be easier and more appropriate, though, to get a 504 plan. A 504 plan is accommodations (like extra time on assignments, taking extra breaks, reduced workload)for staying in the regular classroom/curriculum. An IEP would be needed to engage SPED help, like therapies.

Allie's neurologist recommended a product called Migrelief for prevention, which is mostly magnesium w/ a few other things (feverfew and riboflavin), but, I find that she does better on just magnesium- and SuperNuThera(a Kirkman's product) multivitamin. I give a LOT of magnesium, cutting back a bit if she gets diarhrea. Also, daily 100% RDA cod liver oil (2x/day if things get bad). Allie is still on ibuprofen 24/7- I wish I could get her off but things go down hill badly if I'm even late on that. And, I find that ibuprofen works better for her than naproxen. If all that fails to prevent a migraine, we use Sumatriptan (generic imitrex) nasal spray for a rescue med and it works in about 10 minutes. That being said, when Allie gets migraines- she's sick. If it happens more than once a week, she needs a course of clindamycin (or rifampin) and then she will be pretty much migraine free until the next flare hits. But ,even then she needs the ibuprofen and supplements to keep from getting headaches.

I'm told by the immunologist that antibodies last @ 3 weeks. But, the immune system doesn't just make antibodies when there is active infection, it also makes antibodies in response to exposure. Further, if the immune system is tricked into reacting to the self tissue that the autoantibodies cross reacted to...that could also trigger stuff. Just a few possibilities that I can think of..But, nobody really knows for sure.

Not to speak for P.Mom, but the distinction I see is that "permanent damage" means tissue has been destroyed, the nerve cells are dead. An analogy would be like the tissue damage in type1 diabetes, where the insulin producing cells are destroyed, so the body can no longer make insulin. But "pathways permanently altered" means that there is a stimulus-automatic response developed (learned). But, new pathways can be built and strengthened through practice. So, its like your 1st language is an automatic pathway that has been developed in your brain. But you can learn a new language- it doesn't replace the other pathway (1st language acquisition), but it can also become automatic. So, OCD behaviors can forge permanent pathways and become automatic, but you can still form other pathways that can be strengthened and also become automatic. Very nice peglem. i believe the same is true for tics. now i need to quiet that path enough so the "normal" dominant path can reestablish itself. I just think that the path on tics may be more complex or wider or deeper or any other analagy. I actually wondered about tics as I wrote that...do tic movements become "learned" the same way as ocd? I guess it seems to me like ocd is more aberrant thought processing and tics are more...IDN, automatic? For my daughter, there isn't much "normal" to fall back on- we really have to start almost from scratch- building new pathways since she started in infancy w/ this crap. She did manage to build some speech before the BigOne took it all away, and I suppose that's still there somewhere.

Not to speak for P.Mom, but the distinction I see is that "permanent damage" means tissue has been destroyed, the nerve cells are dead. An analogy would be like the tissue damage in type1 diabetes, where the insulin producing cells are destroyed, so the body can no longer make insulin. But "pathways permanently altered" means that there is a stimulus-automatic response developed (learned). But, new pathways can be built and strengthened through practice. So, its like your 1st language is an automatic pathway that has been developed in your brain. But you can learn a new language- it doesn't replace the other pathway (1st language acquisition), but it can also become automatic. So, OCD behaviors can forge permanent pathways and become automatic, but you can still form other pathways that can be strengthened and also become automatic.

We use a 5mg time release tablet made by Natrol. The highest dose I'd used before that was 3mg, but not TR. She does not waken 3 hours later on the TR like she did w/ the regular.

I treat them like any other flare (flair?-I'm never sure)- in our case, that's usually abx and prednisone. But we also have ongoing treatment of IVIG and zith.

Do you have a sincere belief that God does not want you to risk the health of your child? I don't think the state's wording is clear, since religious belief encompasses philosophical and moral belief. How do they define "sincere religious belief"?

Again, it depends on the state- some require pastor/priest signature, others just require you to sign that vaccination goes against your own religious beliefs.

You need to find out what vaccine exemptions are for your state. Some states allow a personal exemption, some have religious exemption. I think all of them have a medical exemption. This is dated Feb. 2012: http://www.ncsl.org/issues-research/health/school-immunization-exemption-state-laws.aspx

Rheumatic fever happens when a the antibodies to a strep infection attack tissue in the heart valves. Is there evidence of heart involvement? Elevated ASO is just a marker for antibodies to a strep exotoxin- it indicates a recent bout of strep. A single measure of ASO cannot even tell you if there is a current strep infection- if you see a rise in ASO over time, that would indicate an unresolved infection. Poor response to prednisone does not rule out PANDAS.

Once the auto-immune reaction kicks in, just getting rid of the infection doesn't stop that. The auto-antibodies and inflammation have to be reduced. I'd give ibuprofen and prednisone.

Where are you? Maybe somebody can help out w/ some local resources.

Yes, also, thyroid problems can cause muscle pain.

Ewww.

I KNOW! Also had my b-day, wedding anniversary (and new grandbaby) all during Allie's spring break! Also, hub lost his job this week- eek! Allie's 1 on 1 and her speech therapist from school took her to an elevator today (those 2 have been an amazing help!). She was a little hesitant, but totally opened and walked in the elevator herself, with no coaxing. What an amazing time! I wonder how long it will take her to decide to go up and down?

Yes, when I re-read this thread last night I was reminded what a genius Meg's Mom is!

Alleluia!!!! I know that wonderful feeling! Cause for celebration!