nicklemama

Hi folks. I'm asking again for doc recommendations. I reached out again to another mom on a parenting board who's son I think has PANDAS. He's had 8 days of augmentin, so far, and his tics and behaviors are improving. She's looking for a doc near her. I can give her the names of the big guns. Anyone she can see locally? She looked at the pandasnetwork.org site but no one is listed. I sent her the link for this board. Hopefully, she will join us as she tries to figure out what is wrong with her son. Thank you in advance.

A Lice Lady. Who would have thought? Hmmmmm, a home based business to pay for PANDAS treatment.......

No experience but the preemptive non toxic ideas above sounds like a good idea. In our school district, kids with nits are not allowed in school. I think your daughters friend should have waited 24 hrs after treatment to return.

Just making sure, lol!

I'd like some of that as long as I don't have to get it from feces! Lol.

Pow wow I think that's a question for Dr Cunningham and I hope it gets asked at the NE PANS conference.

You cannot. They change the reference ranges based on their controls. They must have changed the controls during the downtime and subsequent gearing up of the new lab.

Ds has been tested for everything under the sun. All Dr T's tests. The only thing we found was ehrlichia and anaplasma. He's never had strep titers positive. He cannot be without augmentin. Not even prophylactic dose works. He is also on biaxin now to treat the coinfections. He flaired when he lost a molar and clindamycin was added for 10 days which worked and he came back out of it. My son cannot go without treatment dose abx.

Make an appt with Dr Latimer. It will take awhile to get in. See one of the local docs recommended. Test for Lyme and coinfections. We've been at this 4 years. We saw improvement after dx and starting antibiotics. More improvement after IVIG. Caught pneumonia 19 months later and had 2nd IVIG. Found local doc who is Lyme friendly. Tested and found ehrlichia and anaplasma. Started treating that. He's the best he's been in 4 yrs on augmentin, biaxin, diflucan, treating for compound heterozygous MTHFR and some other supplements and enhansa.

DS has dust/mite allergy.. Encasements and getting rid of feather pillow helped a ton plus daily Claritin. I'm too afraid to try the shots the allergist recommends.

My son is on daily augmentin and biaxin, treatment dose. He had a flare after losing a molar and he took 10 days of clindamycin and it snapped him out of it. Yes, took all 3 at the same time. The clindamycin lotion is brand name Cleosin. It's been around for ages as an acne treatment. My brother, who is now 51, used it on his skin for acne when he was a teen. I think its perfectly fine to use. He won't get much systemically, if at all. No danger of c diff. It's a generic warning about clindamycin.

Tmom- I'm so sorry you are in such a tough spot. It's very difficult. I've been there. Could be there again:(. I like the suggestion to taper off abx slowly and see where you are. I didn't read the article as saying these specific abx cause those side effects, just some and it didn't clarify. There are those who have reported negative reactions to abx right here on this forum. It's worth trying something else, another combo, prophylactic dosing, etc.... We never got lasting recovery on prophylactic augmentin. My son has been doing his best on augmentin and biaxin at full strength, treating ehrlichia and anaplasma. Even on these, he had a flair when he lost a molar and we added clindamycin for 10 days.

It's saying the opposite. Clavalunate has anxiolytics properties....acts as a type of anti anxiety med and reduces glutamate. The beta lactams offer more than just anti microbial benefits. You should be aware of this when prescribing antidepressants ,etc.... That's what I read.

She doesn't know what she's talking about. Amoxi is like swatting an elephant with a fly swatter. My son takes augmentin. Other kids take azithromycin or cefdnir or similar class of drugs. Clindamycin is the big gun.

Enhansa. It's compounded curcumin from a pharmacy in Ohio, Lee Silsby. My sons doctor writes a prescription and our insurance pays for it. You can get it without a prescription but its pricey. I've been able to completely take my son off ibuprofen except during illness flairs. He's taking 600 mg twice a day.

I would be inclined to think herx reaction. Keep giving the amoxi and see where it goes. I'd also remind you that to expect a sawtoothed recovery. Things get better then a few steps back then forward again.

I wasn't implying maternal age has anything to do with it. I was just commisurating that when you are older with a younger child, its tough. You are not at your physical peak dealing with a child that can be physically aggressive. We adopted our son and his birthmother was 19 when he was born. I don't believe his prenatal environment is the cause of this. He was so healthy prior and doing very well academically, socially and in all other areas of development. He was such a good baby and the sweetest boy. He still is the sweetest boy when PANDAS is not attacking his brain.

Interesting.

Bees, we are roughly in the same boat. I'm 53 with a 9 yo PANS boy. I feel it.

My son was sleeping through the night at 6 months of age. At five, PANS started and he no longer slept through. I lived through this for about 2.5 yrs. My son had intense separation anxiety and nightmares and intrusive thoughts. Melatonin helped him fall asleep but he always woke and got in our bed and then thrashed and cried out off and on the rest of the night. He did not start sleeping through the night and staying in his own bed until a few months after the first IVIG. That was 28 months ago. You have to get rid of the infections and then the autoimmune reaction and then sleep will come. It's not an easy or quick fix. If you've got a nursing infant, the sleeping bag by the bed would be something to try. I look back and wonder how we survived it but we did and you'll find what works for you, too. Hang I there.

Can he order it and have it done with an infusion company?

Email Dr K and give him the facts. If its been less than a year since IVIG, he'll respond. My son cannot maintain on prophylactic abx either. We've since found ehrlichia and anaplasma.

My sons IgE was within the normal range. He tested in the 900's for Brewers and Bakers yeast. I put him on a yeast free diet for 14 months and I saw no benefits. In fact, he caught pneumonia and had a second IVIG during this time. Late this spring I stopped following the diet. He's doing really well right now, I believe due to the fact that a new doctor tested him for Lyme and coinfections and he's being treated for ehrlichia and anaplasma for the past 4 months. He's had IVIG twice with Dr K.

Fourteen days of abx is barely enough time to see small improvements. After nearly four years of this, the one thing that keeps my son doing well is daily treatment dose abx. When it wasn't working as well earlier this year, we did additional testing, found tick born infections and now he's on two antibiotics and doing well. He had a flare after losing a baby tooth molar. Took 10 days of clindamycin, along with the other two antibiotics and he's back to doing well again.

Hooray! We joined around the same time.