mdmom

Kim, Thanks. Sorry to hijack the post.

Kim, What were your son's IGG levels before IVIG?

Without having positive tests for any viruses, our doc prescribed Valtrex 1GM BID for my son. Doc had a suspicion that he had a high viral load. Doc was right - DS started reporting that he felt much better on what he started to call the "magic blue pill." We stopped Valtrex 2 months ago and noticed some more irritability and overall malaise. We used Lauricidin in it's place. Doc advised us to get DS back on the Valtrex, and we did. DS is feeling better again. We also continue with Lauricidin. Not sure how long he will have to stay on the Valtrex, but it clearly helps.

We have done 2 steroid bursts during PANDAS exacerbations. My son did get worse during the treatment, but 2 weeks after he finished the course of steroids, he was a calm, almost typical child. He kept reporting, "my brain feels so clear and my OCD is gone." It was the proof we seemed to need that he has PANDAS. My son has a very similar history to yours. Docs have described PANDAS treatments as "peeling back the layers," like an onion. You've got to peel all the layers to get to the good stuff. Your son may experience symptoms he had previously while on steroids. So yes, it might be a bumpy ride and I wouldn't recommend sending him to school during the treatment. My son looked like he wanted to climb the walls while he was on steroids. If he could have unzipped his own skin and climbed out of himself, he would have done so. But the reward of him feeling good was worth it.

Hijacking this post... Kimballot, What dose of IVIG is your son getting every 6 weeks? Also, is this dose helping with CVID as well as PANDAS?

I don't know what kind of magic they work at USF, but my son is so motivated to do the hard work to get rid of his OCD that my husband and I are in disbelief! I am thrilled, to say the least. Mind you, he is not in a PANS exacerbation at the moment, but I know he is learning tools to deal with his OCD when/if it worsens again.

Don't settle for anything less than 100%. I know that seems like a tall order. But your son is young and you caught PANDAS early in the game, unlike many of us here. He has a fighting chance of recovery considering his age. Continue to advocate and trust your mama-bear instinct. If you think he needs higher doses and you think he could improve more, advocate, advocate, advocate. You are your son's best defense against this.

We are in FL right now for the program. Only on day 3. Haven't learned enough to answer your questions, but I will keep you posted. I will PM you as the week progresses. What I can tell you is that my son really likes the doc and he has never responded to any other therapy, but seems motivated to do his homework. They are no-nonsense at USF, for sure. One of my questions for the doc this week is will there be support for the child once we return home (i.e. can we do a phone consult). We traveled a long way to get here, so it will not be possible to schedule an appt. for a "tune-up," now and then.

I would suggest finding an LLMD (Lyme-literate medical doc). I am not suggesting that your children have Lyme. However, LLMD's are particularly good at finding and treating strange infections. Finding an LLMD over 20 months ago was the best thing we ever did. Our LLMD also treats PANDAS.

My son and I just had a conversation earlier today when we both tried to imagine what life would have been like if he had not been diagnosed with PANDAS/PANS exactly 2 years ago. He had been mis-diagnosed for many years and was rotting in a special-ed school 50 miles from our home. We are both thankful for the proper diagnosis and for the doctors who have been a part of his healing, which has been slow but steady. I am especially thankful for all of you smart, caring moms and dads out there who are fighting for their kids and who take the time to share their stories and information with the rest of us. I'd be lost without this forum!

I watched my recording of this on Katie last night. It is great that the author is getting the word out on autoimmune neuropsychiatric illness. It can only help our cause. I thought they did a good job of keeping the story simple especially when they mentioned treatment. They only talked about the treatment with steroids. According to her interview on NPR, she also had IVIG. Had they mentioned this on Katie, this would confused people. Everyone knows what steroids are; IVIG would have sounded strange, since most people do not know what it is.

Last week our LLMD added IV Zithromax to the protocol to treat WA1. Only after 2 doses, my children are reporting that they feel better. I'm keeping my fingers crossed that this is the missing puzzle piece! collenrn - like you, we only got an IGG result for WA1 (through Quest). Not sure why they don't run an IGM on this. Our LLMD says that Babesia might disable the immune system in some way leading to an immune deficiency in some people. LLMD doesn't seem to know if the immune system will repair itself once the infection is gone.

My daughter got to the point of not tolerating abx (gut issues) and my son just wansn't responding to oral abx. We made the switch to IV treatments and have seen a lot of improvement, but we are still not quite there. Daughter (infections only) has been on IV since March and son (PANS + infections) since January. Not sure when it will end. My son's CD57 was 13 in March 2011 and dipped to 9 after 16 months of treatment. Babesia as well as Lyme can suppress CD57 (and I imagine other things can do this as well). It's the lowest the LLMD has ever seen. Mold is something that nags me everyday, but we are not prepared financially to remediate. So I ignore it for now knowing I will have to open Pandora's box at some point. Best of luck with the mold inspector. Keep us posted.

It reminds me of the time that last year when I went to hear a doc from Hopkins speak about chronic Lyme. He convinced the crowd that he does believe in chronic Lyme (Hopkins docs are usually nay-sayers); however, he said that chronic Lyme does not exist because everyone at some point would have received antibiotics for something. So if they had antibiotics in their lifetime and contracted Lyme, then he said you can't call it chronic Lyme because it would have been treated by whatever antibiotic was given. He kept calling it "Post Lyme Syndrome." Really? He almost had me snowed during the presentation. On my ride home, I came back to reality and realized what an idiot he is.

For those of you who have children getting IVIG for CVID or another primary immune deficiency, how low were your children's total IGG levels when they were diagnosed? Just curious....

Did anyone else listen to her speak on NPR's "Fresh Air," today? The disorder sounds so much like PANDAS/PANS and she was treated over an 8 month period with steroids and IVIG. Hmmm...sounds familiar. Author was also on the Katie show today. Also, she did admit that she could relapse at any time.

wornoutmom, I am writing this with tears in my eyes. I am so grateful that you took the time to share your son's story, even though you are no longer a "regular," on this forum. This forum has literally been a lifeline for me. Your post is especially timely because after 2 years of treating my son for PANS (and many infections), we are at a plateau and no doctor seems to know what to do next. My son is 15 and I don't know what the future will look like for him, as he is unable to attend school until we can clear infections and modulate his immune system. So thank you, thank you, for giving me hope - your story fuels my fire to keep fighting!

This is a warning for all.... Babesesia duncani (WA1) is impossible to treat. After 8 months of IV antibiotics, 10 rounds of Mepron + Proguanil Hydrochloride (one of the ingredients in Malarone), my daughter is still IGG positive for WA1. Her symptoms linger, although she is doing much better. We are all being treated in the house hoping that it will help eradicate the nasty worms. I am trying to muster up more patience. There is no end in sight.

I know some of you will be angry about this.... My son with Asperger's was kicked out of lots of things. Sign the petition if you think it's wrong. http://www.change.org/petitions/ymca-stop-discriminating-against-children-with-autism-and-other-disabilities

It was my daughter that was treated. He didn't treat - the other Lyme doc there is our doc. Treatment was based on clinical symptoms. Every day around sundown my daughter would get very itchy, mostly on her back. Immediately after scratching it, she would get cross-hatch patterned raised bumps on her skin (like a raised hive). Gastro involvement was significant ( a lot of stomach pain) and she was angry, irritable. Parasitic protocol was 6 weeks long. If you want specifics, I'd have to look through my med cabinet (It's very crowded!) to get the names of the meds that were used.

Same Lyme practice as you.

My son has been 100% milk-free for over 3 years now. I am not worried about "micro-nutrients." Docs have been brainwashed by the American Dairy Association that we all need to be drinking/eating milk products. When my son was dealing with chronic constipation that led us to a GI specialist at a world-reknowned hospital, I removed milk a few days prior to his appointment to see if it would help relieve his symptoms. The doctor actually yelled at me for removing the milk without any proof of an allergy or intolerance. I ignored the advice, continued with a milk-free diet and the constipation went away within a week. Trust your gut. If you think it is helping, stick with it. It may be a piece of the puzzle.

I don't know the exact relationship between VEGF and thick blood. I have read elevated VEGF with mold exposure. My daughter has elevated VEGF because of Bartonella.

Sweats, dizziness and random rashes are all symptoms of Babesiosis, which is very common on the East Coast. Check out the list of symptoms of tick-borne illnesses under the "Helpful Threads."

Our parasitic symptoms: itching (especially in the evening), gastric/intestinal distress, anger. Parasites also tend to get very busy during a full moon and you would see an increase in symptoms.