Mayzoo

My daughter's titers are VERY low (DNASE-95 and ASO-6 during an actual strep infection). For OCD, most folks on here recommend treatment with the proper antibiotics to get the underlying issue in control and ERP (Exposure-Response prevention). A google search on this is very informative: My link, In a nut shell, it is slowly and methodically exposing a person to what they fear in a manner they learn they can handle and overcome the fear/anxiety associated. It is very empowering when successful. Read up on it. There are many ways to this wrong and the negatives of doing this wrong are not good, BUT if you read up on it, it can be successfully done at home by a well-read parent. I am also giving my daughter lemon balm capsules for separation anxiety at the moment, until we get a good handle on the ERP and a bit deeper into the program.

Bactrim is a SULFA drug. Sulfa drugs are more appropriately labeled sulfonamides and are derivatives of para-amino benzoic acid. Sulfur is an element of the earth. This element is essential to life, and is the eighth most prevalent element in the human body. They are not the same, thus issues with one does not preclude taking the other in any way. A sulfanomide does contain sulfur, but the sulfur atoms are imbedded in a complex molecule. The sulfur atom is not the allergenic agent and being allergic to sulfa drugs does not imply having a propensity to allergy to other sulfur compounds. http://www.itmonline.org/arts/sulfa.htm

Awesome, glad to hear you are getting a well needed break. I hope this last for a very long time.

You are welcome. Since it is a fiber, start slow and increase to how much works. As with all fiber supplments, if you start high dose, then you may have too much gas and bloating. The recommended dose for adults is four caps a day. I am giving two caps with her probiotic mid day. At least for me, every little battle we can solve makes the big ones easier to cope with. I think solving this has aided in my kiddos fear of potties too. Either that or the lemon balm is helping with that.....either way, two small issues solved for now !!

I have not seen this with my kiddo, but here are two ACN threads about this subject that may help you piece things together. http://www.latitudes.org/forums/index.php?showtopic=19736&st=0&p=154481&hl=blood%20draw&fromsearch=1entry154481 http://www.latitudes.org/forums/index.php?showtopic=7632&st=0&p=62077&hl=bloodletting&fromsearch=1entry62077

Sundown Inulin prebiotic 3,333mg inulin per 4 capsules.

Yeah, it is great to solve as many small issues as possible--almost makes the big issues less daunting. I give kiddo the inulin at the same time as her probiotic. No serious gas issues yet......crosses fingers.

Kiddo has dealt with constipation for as long as I can remember. Lately, I have added two inulin prebiotic capsules and for the last 10 days her constipation is gone. The inulin is a fiber based prebiotic, and it has at least worked wonders for her constipation.

My kiddo has no stuttering, but she stopped talking for three months. When she began speaking again, she only whispers. She has been whispering since 12-2011 with only a one month exception when she was almost 100%. We will be talking to Doctor Rao about it soon for any input he may have.

Many docs used to have no real issues with prescribing long term ABX (years) for acne, but now they do not like to prescribe long term for PANDAS. *Sigh*

Hmmm, to be on the safe side, I think we will go back to freshly ground flax seed if the inulin fiber prebiotic does not completely resolve her issues. Here are a few aticles on Miralax and autism: My link My link

Oh, I am sooo sorry to hear this. With what we pay to treat just kiddo and my attempts to boost my immune system so I do not get her sick, I cannot imagine paying to treat six. I hope you have good insurance, but I know much of this stuff is not covered or is out of network. Are they retesting the 3 yr old after treatment or just waiting for symptoms to reappear? I know my kiddos doc did not want to retest her after the first treatment, but when I pushed the issue hard, they retested her and she was still positive and continued to be positive for almost 60 straight days. Now they test her every time I take her in, and I have rapid strep tests I keep at home (bought on Amazon) in case I suspect she is positive.

Capsules, gelcaps and softgels can all be opened on put into food or drinks. Not sure about the flavors, but here is what I found: Thiamin 50mg capsules Folic Acid 500mcg (.5mg) drops Vitamin E is in a gel cap and can be opened and squeezed out onto any food. CO Q 10 softgels 100mg (open and squeeze out) Creatin powder (measure to needs) Levocarnitine Liquid You can combine all of these together as one dose in say one drink, unless the flavors are too hard to mask (as far as I am aware), but you need space each "dose" out by 6-8 hours if at all possible. All these links are to Amazon, but there are many internet sources for supplements. Iherb, Vitacoast, etc. You can google "where can I buy vitamin supplements" and get a whole list of suppliers for price comparisons. Good luck.

We use miralax powder for bouts of constipation, it is clear and flavorless so if you needed to sneak it in to avoid the fight you could. I am hoping by adding the inulin fiber pre-biotics the constipation bouts will be less frequent. Is he drinking a lot of water? He needs to be drinking a lot of water with IVIG anyway. My kiddo is afraid of potties in general right now, so I sympathize.

I should add that kiddos pupils were dilated 90 + % of the time and she had a low grade fever for about 6-8 months until we had her tonsils out. Now her pupils are dilated maybe 20% of the time, and her temp is regularly normal for the first time in a long time.

Kiddo was very healthy (or as I suspect now ill without symptoms) until 9-2011. A small part of her history looks like this: 01/05/12 Pedi SX Went in for blood work, throat was red DX Strep + rapid culture TX Amox 500 bid x10d 01/15/12 Pedi SX follow up retest strep DX + rapid strep test TX Augmenting 1050mg bid x10d 01/24/12 Pedi SX Retest strep DX + rapid strep test, PANDAS TX Zithromax 250mg x 6 days 01/30/12 Pedi SX Retest strep DX + rapid strep test, PANDAS TX Zithromax 250 mg x30 days 02/29/12 Pedi SX Retest strep—Major improvement in SX DX - rapid strep test TX Zithromax 250 mg x30 days 07/05/13 Pedi SX Some SX returning, nightmares, hollering, whispering DX + rapid strep, PANDAS TX Chg zithromax to Mino 50mg BID She was strep +, but asymptomatic, for almost 60 straight days. This coupled with much of what I had read here made me feel in my gut that her Tonsils were harboring bacteria that began seeping out as soon as we stopped aggressive treatments. Every time we saw the pedi or the ENT they said her tonsils looked fine; however, upon removal, they told me the tonsils looked consistent with chronic infection. They were pitted and had "deep crypts full of debris and bacteria."

Does she still have her tonsils? My kiddo had her tonsils out recently and we found they had been harboring bacteria. Every time she was doing well on treatment dose, when we started to wean off, she declined. Now we are going to treat to clear what infection is left, and I have instituted natural abx (Olive Leaf Ext, Propolis caps, and Coconut oil) to help cover her when we begin the wean process again. It would be difficult to discern which angle the azith is treating. Last time you tried to wean, were you using Advil or the arnica? If not, when you wean this time try with the Advil and arnica and see what happens. That may add a piece to the puzzle.

I should add that we also use Extra Virgin Coconut Oil and Propolis Capsules as natural antibiotics.

Right now I give it to kiddo with her ABX. She is taking the Planetary Herbs brand and it has a nasty flavor. Kiddo takes all pills with no fuss, but this one has been problematic. I am going to try a capsule next time, probably Swanson or Life Force.

Here are a few articles I found so far: http://psychcentral.com/news/2010/12/01/brain-inflammation-linked-to-suicidal-tendencies/21371.html http://www.nature.com/mp/journal/v7/n3/full/4001007a.html (associates MS with hormones) http://ucsdnews.ucsd.edu/newsrel/health/05-12BrainInflammation.asp "discovered a steroid hormone that inhibits inflammation in the brain." http://www.medicalnewstoday.com/releases/225195.php "Estrogen Receptors Play Anti-Inflammatory Role In The Brain" I have not read all these articles yet, but will when I get a chance. Just a quick google search to see what I found.

No reason it cannot correlate. They have recently stated that the older the father is increases the likely hood of autism. I was 34 and hubby was 39 when kiddo was born. There is a blood test to check women for hormones levels.

Anecdotal information, but I suspect my kiddo had very mild PANDAS that went untreated/undiagnosed since she was 2-3. The moderate, long term flare did not occur until she entered puberty. We have been battling this steadily since then.

Maybe she was exposed to strep in the office and is reacting similar to if her siblings had it? Congrats on getting in, out, and home safely!!

I have no idea, we have not been there yet and my kiddo is young enough I can force pills/liquids if I have to. If he has any rational thought process left, can you explain that if he refuses pills, he will likely have to be given shots once a week or once a month (Bicillin or Rocephin). Maybe ask the nurse or your doc to put in a firm stance tomorrow during the IVIG?

We had to use Zithromax for 45 days straight to finally clear my daughter. Here is is her short history during the time she was positive for 60 days: 01/05/12 SX Went in for blood work, throat was red DX Strep + rapid culture TX Amox 500 bid x10d 01/15/12 SX follow up retest strep DX + rapid strep test TX Augmenting 1050mg bid x10d 01/24/12 SX Retest strep DX + rapid strep test, PANDAS TX Zithromax 250mg x 6 days 01/30/12 SX Retest strep DX + rapid strep test, PANDAS TX Zithromax 250 mg x30 days 02/29/12 SX Retest strep—Major improvement in SX DX - rapid strep test TX Zithromax 250 mg x30 days