cara615

We did an OAT test to determine the level of bad bacteria and yeast in DS's gut. Once we started him on BRAVO probiotic and his gut cleared up (we retested with the OAT) all his vocal tics went away. We are not dealing with any other PANS symptoms at this point in time.

No herxing at all. I give it right before Breakfast and right before Dinner. You can order from iherb.com - the brand name is called HISTAME

Its been a bit since I have posted on here but wanted to give an update. Last I posted we were experimenting with a steroid burst which was highly effective but not sustainable. Recently I heard of something called DAO. Its Diamine Oxidase and is an enzyme that helps the body process histamine. My son has always shown increased tics after eating, going outside, exercise, stress, excitement and infection (of course). We have been infection free for a while now. Titres for all the major infectious triggers are all normal for him. His gut dysbiosis is now in check. But we still struggled with motor tics. Vocals resolved after his gut was healed. Motors remained and were severe at times. I thought about the increase in tics after things like eating and exercise and knew that my son's issues were inflammation related but one day it clicked that the inflammation must be due to histamine. So I started him on the Histame (DAO), 2x a day right before breakfast and dinner. its been a little over a month and 95% of his motor tics are gone. The one that is left is a finger wiggle which is not noticeable at all. No other PANS symptoms to mention since those had resolved with diet changes and the addition of supplements. I just wanted to mention DAO for kids with suspected mast cell activation disorder (MCAD) because this has been miracle for us. We are still on prophylactic abx to keep strep away but have not needed any additional steroid and are planning to come off the Mobic this weekend as well. Hoping this goes well. I will report back soon. The Mobic wasn't really helping that much anyway and I don't want to keep giving it for the sake of giving it. Hope this info can help others with suspected MCAD.

For us the steroid starts working within hours and the effects last for over two weeks (without a daily anti-inflammatory). This most recent burst (we only did a 2 day burst) we added in daily Mobic and we are approaching 2 weeks with 95% reduction in tics and maintaining. Each day it seems to get better and the only spikes in tics i see are after i give him his abx (which is concerning to me).

Thank you all for our very insightful replies. I know allergies are a part of the picture for DS and as such he is on twice daily Allegra. I know its helping but I will inquire with his doctor about something more effective. Right now, the steroid is still effective and the daily Mobic plus CBD oil is keeping inflammation low. He still has tics but he is back to 90% baseline I would say. Let's see if we can keep him like this for a while. Am I right in assuming that if I quiet the glial cells in his brain it will give them time to heal?

I totally understand that. We do plan to test for those soon. Didn't want to take blood from ds on Monday because we didn't want to stress him out too badly. But if he had active infections of any kind wouldn't the steroid make it worse?

We tested negative for Lyme (no IND bands either ) but on Lapcorps Western blot. However, I would think that if he had Lyme then the steroids would have made things worse.

We checked titres for strep, myco P, EBV, coxackie, and H. Pylori. I realize that he could still have another type of infection albeit bacterial or viral but its like looking for a needle in a haystack and putting him back on daily zithro made things worse! I wonder why that was?

What could be the cause of my son's inflammation if he does not have an active infection? Last we tested, all his titres were back to normal. His gut health was much improved and clostridia was gone. He takes Allegra for allergies but yet still has so much inflammation. The steroid I gave him this weekend proved it was inflammation because it reduced his tics by 95%. If he had an underlying infection I would think that the steroid would have had the opposite effect. Will we ever get to the bottom of it and be able to quiet his immune system? Does it just take time or will we need IVIG. Anyone in the same situation?

I am in no way an expert on this but i thought I'd offer my basic knowledge since I just gave ds steroids this weekend. From what I was told and have researched, if there is an underlying infection then the steroids could make things worse because they lower the immune system and allow the infection to take a greater hold. So before giving steroids and also during, the patient should be clear of infection or at least on abx. It looks like your son has been and continues to be on abx so that is good but does he still have an active infection? If so, then the steroids may not make things better. Steroids also promote yeast overgrowth so that is also something to consider especially if your son has gut issues and issues with yeast already. Our experience has been where ds is flaring for no known cause. He has been on profylactic abx and does not currently have an active infection. We gave him 2 days of prednisolone 16mgs and 14mgs respectively. The days he took them he was still ticcing but the very next day 95% of the tics resolved. Now we are on 2 days out and they remain 95% resolved. The plan is to keep him on daily CBD oil and Mobic to keep inflammation from creeping back up again. We are hoping to be able to maintain this for as long as we can until we need to give him another dose of the prednisolone. So my 2 cents would be to kill off all the infections first before you give steroids.

Ok here is an update. I gave DS 16mgs of prednisolone on Sat and another 14mgs on Sunday. Today is Monday and his tics are the lowest I have seen them in 2 years. I won't say tic free because there is a tic here and there but I will take it. We saw Bradstreet today and he feels we can manage ds with Mobic daily to keep inflammation at bay and if tics do break through, give him another dose of the prednisolone. He is not against having to use the steroid every 2 weeks if we have to. I am hoping we can keep him under control for longer than that with the Mobic. We will see. If this plan does not work, we move on to IVIG. As for Lyme and co-infections, he believes that if ds had Lyme and co's the steroids would not have worked as quickly or as effectively as they have. I do still want to test for co's but we decided against taking blood today because ds is doing so well and we don't want to stress him out for any reason.

Do you think I should continue the daily abx? Was it a herx that made his tics go crazy?

So if you read my last post, ds has been flaring for 3 weeks now and I started him back on daily abx (he was on prof abx). Within 2 days his tics got severe. He couldn't stop nodding his head and blinking. It was constant. No time in between. I remembered that I had some prednisolone in the house unused from when he had the croup. I gave him 16mgs. Over the past couple of hours all his tics are resolving. Its slow going but it keeps getting better as the hours go by. What does this tell me? That it totally is inflammation? I'm thinking of just going back to the abx on a profylactic basis. I feel like the daily dose set him off. I see Bradstreet on Monday. I have no idea what he is going to say.

He is 6 and barely 40lbs.

I think he is beginning to respond to the abx. Fingers crossed!!!

Maybe so. I guess i will need Bradstreet to do some detective work. For the meantime, I am praying that daily azithro will do the trick. It has done it in the past. I just know in my gut what he is dealing with right now is totally infection based. He never gets this bad unless there is an infection either inside of him or in his brother.

DS was doing great until school (ofcourse). He started to flare like a week in. The tics were manageable with CBD oil and some mobic here and there (mobic is an NSAID). The past 2 weeks, his tics have gotten even worse while on these anti inflammatories and I suspect infection. Rapid strep came back negative. He is on profylactic abx (azithro 250mgs) 2x a week but I know he can still have an infection. I just realized we had a standing script for 150mgs of azithro daily. I filled it. Do you think it will help him?

How severe are your son's tics? What have you been doing to treat them since the diagnosis?

dut - I tried to PM you but you aren't accepting messages. Can you PM me?

Someone mentioned using this supplement to reduce homocystiene and I am forgetting who told me about it. My question is, how long does it take to have an effect, if any? i started it on DS for about a week and there was no effect at all. We are using it because of his MTHFR mutations. It was recommended by Bradstreet. TIA!!

DS's 23andme results interpreted through livewello show 3 homozygous mutations on the NDFUS7 gene. This gene is involved in something called Leigh's disease. This disease is usually diagnosed at birth or within the first couple of years. Children don't live past 6 or 7 but in some cases may live into young adulthood. There have been rare instances where Leigh's disease first starts in adulthood but this is not the norm. Now, since DS is 6 and shows no signs of any real issues from a mito standpoint other than short stature (we have familial short stature) and the occasional overheating due to too much activity (especially when its hot out), is it safe to say that he does not have Leigh's disease? I do think he may have some mito dysfunction which may or may not lead to other issues later in his life, but can i rest assure that he won't be dying from Leigh's disease? I've over Googled this time and no one ever finds good things when you over Google.

Ds has a lot of them and I'm concerned they are gene deletions. Is that possible?

turns out the crowns are stainless steel and not silver. Is Stainless steel Ok to have in the mouth?

Thank you for this. She should have them removed. her mother told me she has them in there because she grinds her teeth? Its beyond me why they would put mercury in a child with ASD's mouth when they KNOW its toxic.

I know mercury is highly toxic but is silver just as bad? I know a little girl with ASD that has silver in her mouth and I am wondering.