Healing the BBB~how?

[MaggiesMoons]

"T-cells are attracted to weaknesses in the blood-brain barrier and are able to cross the barrier. Once across the T-cells bind with macrophages and cause inflammation. The inflammation brings other T-cells and eventually a breach in the BBB occurs. It appears that either antibodies or B-cells are now able to cross causing the interaction with the neuronal tissue."

 

So it seems the issue is that these kids now have a breached BBB as stated above from a website I can't remember now.

Question: How do we heal the BBB to stop this reaction of PANS (or whatever you want to call it) from occurring in the first place?

This seems to be the million dollar question.....

I know that Ibuprofen helps reduce the inflammation, so how do we stop the inflammation from occurring in the 1st place?

My ds is considered/diagnosed as seronegative PANS, and is thought to have viral triggers as well.

 

ABX seems to make some of the symptoms (OCD and contamination) slightly worse.....now on a prophylactic dose just 2x a week of Azirtho.

Somewhat on the fence as to whether or not to do this ABX, Is it helping or hurting? It is not making things any better, and a slight increase is noticeable.

 

Low histmine, low basophils, low IgG's of different types.....!?! What am I to do with this? I research and research and it seems this could be a methylation issue. Could be too much copper. So do I dose with the specific vitamins suggested on the web, do I test for heavy metals? I feel like I am playing doctor and my son is the guinea pig.

 

Also, has anyone else seen the symptoms get worse while on ABX? If so, do they get better? Is this the Herxing I am hearing about? How do you know if it is herxing or if the ABX are actually helping?

Edited November 21, 2011 by MaggiesMoons

[dcmom]

I have not seen symptoms get worse on abx with my two pandas kids. However, symptoms in pandas are always in flux, getting worse or getting better, so sometimes it is hard to tease out what exactly is going on until you see it several times.

 

My kids did close to 2 years of daily zithromax. The summer I took them off of everything, with no change for the worse. Since I am a chicken, I do have them on 2x a week prophylaxis now. I have come to think that antibiotics are not needed in pandas unless symptoms flare. I am probably alone in this, however. But- if you do think they are at best not helping, and possibly making things worse- why don't you try a trial without antibiotics.

 

For my kids the key to getting/keeping them well has been immune modulating treatments- pex and steroids.

[LNN]

You were one of the first to put me on the methylation research and I have to say, for some kids, it may make a lot of sense. I ended up getting Amy Yasko's DVDs about methylation and somewhere in there, she does talk about T-cells and B cells and the BBB. I don't dare try to repeat it - would butcher it badly. If you have the funds, It may be a wise investment of $54. I'm not advocating her program or her tests or her supplements. I am way too cash-strapped to consider that and assume I'm not alone there. But the info in the DVDs does provoke a lot of good ideas and things to try and/or discuss with your doctor (the one who suggested histadelia).

 

You can test for metals - but you will find lots of contradictory info on how accurate the tests are and what to do about it. If you do have a methylation block, chelating metals before you address the block could make detox very difficult. You can try a few supplements, added one at a time, to see if you noticed any change. Apparently, when you give something to help a methylation block, you enjoy a honeymoon and then see a "herxing" as the block gets cleared and a detox process begins. Not something any of us relish doing without a doctor's support. But if you get really frustrated with a lack of progress, you could always do a small trial. If you think maybe copper, you can supplement with zinc for 3-4 weeks. Zinc is a copper agonist. (My kids are on 40mg elemental zinc to give you a reference range but they have a known deficiency)

 

If you don't feel abx is helping, then follow your instincts. Not sure how much the dosing/schedule you're on is preventing anything and if you see a negative, then not sure what you're accomplishing. Not sure you'd see herxing on such a small and infrequent dose.

 

But it's a very personal decision. No wrong or right. Unfortunately, your son is a bit of a guinea pig. But no one is going to advocate and get him the care he needs like you will. So don't be afraid of trying things after you research them. Ask your doctor for input, then try. It's probably the only way you'll be able to get a sense of which direction you need to go.

[dut]

LLM - can you give me the name of the yasko book and dvds not sure wghich ones to order thanks

 

also pm'd you asking same info

Edited November 21, 2011 by dut

[LNN]

The book is Autism:Pathways to Recovery, which was mildly helpful. Will probably help you more, as you have specific test info back already. If you go to her web site http://www.holisticheal.com/autism-pathways-to-recovery-esp.html you can get the DVDs with the book. She also has other DVDs that might be of interest. This was all I went with.

 

The DVDs are LONG. 2 hrs each. But the first DVD was fascinating (to me anyway). At around 1 hr 15 min, she has a 20 min explanation of what she speculates is going on specifically with strep and Pandas in autistic kids. All about glutamate...surprise surprise.

 

It kills me to pay lots of money for books by specialists who are selling stuff. I was very disappointed in Cutler's book. Like Cutler, she has her critics and some of that criticism may be valid. But this one Yasko DVD was worth the money. I can't consider her program. But am definitely using her ideas (and our pending MTHFR lab report) to guide me on supplements - and am seeing progress.

 

Keep me posted on the doctor's appt!

[dut]

thanks - will do!

[HelenJenn]

My son's OCD symptoms may have been triggered, or pushed over the edge with antibiotics. He was already reacting to food(frequent urination/yeast), low immunity(infection/colds). Then had a gum absess. Never did antibiotics before but had no options. His intrusive thoughts and behaviours coincided with these antibiotics.

 

We are taking the route of boosting the immune and taking out foods we think he is reacting to-dairy, wheat etc. He improved+++. But still reacting when sore throats come back so hence working to build immunity while staying away from antibiotics.

[SSS]

My son's OCD symptoms may have been triggered, or pushed over the edge with antibiotics. He was already reacting to food(frequent urination/yeast), low immunity(infection/colds). Then had a gum absess. Never did antibiotics before but had no options. His intrusive thoughts and behaviours coincided with these antibiotics.

 

We are taking the route of boosting the immune and taking out foods we think he is reacting to-dairy, wheat etc. He improved+++. But still reacting when sore throats come back so hence working to build immunity while staying away from antibiotics.

 

*Olive Leaf Extract (OLE) may help...

[lfran]

Which antibiotics is he on? There is some medical literature out there that shows that Amoxicillin can cause intrusive thoughts and other psychiatric issues. I am 99% certain that that is a factor in our family. If your son is on amoxicillin or an amoxicillin-family abx, especially at a high dose or for a long time, you might want to look into this. I know it sounds crazy, and it's not common, but it's out there (and it's even listed in the possible side effects in some of the websites I researched).

 

 

My son's OCD symptoms may have been triggered, or pushed over the edge with antibiotics. He was already reacting to food(frequent urination/yeast), low immunity(infection/colds). Then had a gum absess. Never did antibiotics before but had no options. His intrusive thoughts and behaviours coincided with these antibiotics.

 

We are taking the route of boosting the immune and taking out foods we think he is reacting to-dairy, wheat etc. He improved+++. But still reacting when sore throats come back so hence working to build immunity while staying away from antibiotics.