Cat, Oh mama, others need help! this ones a doozey

[kim]

Ok. I ma going to try to make a very long story short so I won;t wear you all out before you finish here and so you can answer hopefully some of my questions.
My son is 10 years old. He is diagnosed with Tourettes Syndrome, ADHD, and OCd.
Age 4 diagnosed with adhd. very , very hyper , impulsive, busy, busy, busy.
stared trying different meds, had a very hard time finding one that worked well.
age 6 got strep. About 3 weeks later, boom!! he started with SEVERE tics non stop..... and ocd symptoms...
tried all kinds of meds without much success... tried almost every supplement , vitamins without much success... ok here's my dilemia...
my sons doct thinks Wright is pandas.. pediatric autoimmune neuropsychic disorder ass. with strep. Basiclly some kids get strep, strep inf. hits basal ganglia of the brain, and anitbodies started attacking healthy tissue there, thus causing , the sudden onset of ts and ocd.
so doct thinks alot of my sons problems arise with his immune system... we did alot of testing that showed my son still was fighting off strep infection possibly from when he was 6 adn the ts, ocd first started. Doct thinks IVIG treatment could help my son. But it is still bieng researched,, involves getting antobodies from other peoples blood to help fight off infection still existing in my son.... antibiotics don;t help wiht this...
If your not sure about ivig treatment you can look under pandas and look under treatments.,..
My sons doctor is very smart,,, open to supplements etc. I really do trust him but this all scares me....
If we decide not to do the ivig, si there something naturally we could try boost the immune system and fight infection.??
THANKS yalll, I know this was long, please help if lyou can,
kim

[ohmama]

Looks like I am the first to respond to this. No doubt you will get more advice to keep you busy doing research. There is extensive material available on molecular immunology. Please check out www.lef.org/protocols/prtcl-062.shtml for information on immune enhancement.

I'm sure dealing with all this is very exhausting for you. I am sorry for what you and your son are going through, it must be awful. No matter what you decide on treatment the information on immune enhancement will help you and can/should be used.

I'm sorry I am not familiar with PANDAS specifically but I am sure there are others here who can give some input on this. You may already be familiar with this but I wanted to mention
there is research being done on this that you can check out at intramural.nimh.nih.gov/research/pdn

[swmom]

In addition to the folks here, run this by "millermom" and "mayleng" at [e-mail]/index.cgi, too. They may have some thoughts for you, too.

[catatonic]

Kim, since strep (and therefore PANDAS) are caused by bacterial infection, to treat these conditions you need to use antibiotics. There simply is no adequate substitute in terms of treatment. If any of my own children contracted PANDAS I'd jump on the antibiotics so fast your head would spin.

There are a number of things you can do to make sure the treatment does no further harm, and to help protect your son from future immunologically related events.

If you give antibiotics, begin probiotic supplementation at the same time. Probiotics are simply friendly and necessary intestinal organisms normally of the variety lacillus acidophilus and bifidus. They're often referred to collectively as "acidophilus".

Acidophilus is widely available in the refrigerated section of health food stores in amber colored jars (since live cultures are sensitive to light and temperature). Only the live cultures are truly useful, not the freeze-dried capsules. Acidophilus will keep your intestines populated with necessary flora and help wipe out the ones you don't want (such as yeast, which tends to flourish every time antibiotics depopulate the competing - and necessary - intestinal bacteria). Acidophilus will not interfere in any way with the antibiotic.

As for boosting the immune system as a preventive measure, probably the simplest and most powerful thing you can do is provide effective antioxidants to help the body clean up its own "garbage". You starting point can be as simple as a good multi-vitamin each day. Some of the best antioxidants include:
Vitamin C
Vitamin E
Beta-carotene (provitamin A)
Grape seed extract (pycnogenol)
Gingko biloba
Tea (both green and black...contain flavonoids)
Honey
(okay, the last two might not be the most powerful, but they're the most fun)

There are a number of other substances making antioxidant claims, but few of them have been well substantiated by research, unlike those above. It's best to take a variety of antioxidants (another good reason for a strong multi-vitamin).

On IVIG treatment, I really don't know the pros and cons. It's used frequently in AIDS patients to help with decreased platelet counts. For children with depressed immune systems, you're talking about long-term treatment (studies show children often require 17+ months to respond if they're given monthly administration) and you may have to deal with side effects.

Take a look at the FDA's warning about IVIG and stroke (normally only a problem with rapid infusion):
www.fda.gov/cber/infosheets/igiv082702.htm

Also the IVIG Handbook, which details uses, treatment, potential side effects, etc. I particularly recommend Chapter 3, which discusses potential side effects and how they can be avoided:
www.bloodlink.bc.ca/documents/ivighandbook1.pdf

Also, look at the National Institute of Health official PANDAS website for a great deal of information on treatment and research:
intramural.nimh.nih.gov/research/pdn/web.htm

Finally, you might want to post your questions on a support board that deals specifically with PANDAS, such as this one:
neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?action=topics&number=251&SUBMIT=Go