cara615

Dr. Bradstreet mentioned that Ds can have a liquid form of GcMAF since he is so terrified of needles. He said its not a potent obviously but it still does the job. i think we are going to go low and slow if we wind up seeing elevated nagalase. I didn't know there could be a herx with this so now that I know, i definitely want to take it easy. I can not handle another flare. I may end up in the ER.

Yes!!! That is him! i am impressed that you read his blog. how did you find him?

I will be completely honest - no flames please (although I think y'all are on the same page as me). I was a vax skeptic when my kids were born. I did not allow the hep vax to be given in the hospital. One of the nurses told me that I could get her fired if I did not give it to my kids. I told her that is not my problem!! My kids are my responsibility!! At our ped's office I had them on a VERY delayed schedule. 1 shot a year. I had a pediatrician come at me with threats that i was harming my kids and I should be locked up! At 6 years old my kids have had dTAP, polio, prevnar, HepA, HepB and HIB - no boosters for any of these except the dTAP. So maybe in total 7 shots each. I stopped vaxing completely when they were 4 years old. I have to write a religious exemption for every school they attend. Ok so fast forward, I now have one kid with PANDAS. Our integrative MD (dr. Tasneem Bhatia - google her) told me straight faced that I saved my son from autism. She said that if i had continued with the vax's he would have regressed and gone further "on the spectrum". Our new Dr. (Bradstreet) studies both Autism and PANDAS extensively and has proof that autism is also immune system based. He showed me some complex diagram about how these macrophages from the mother get into the child in utero and take up residence in the child's brain. He lost me after that point but I know that macrophages kill infections and are an integral part of the immune system. Vaccines create artificial heightened responses from the immune system not including all the preservatives and heavy metals that are toxic to the body. This combination given to a child who is already VULNERABLE from birth can cause the perfect storm of reactions thus creating an environment for neurological damage to occur. I look at it as I saved my son.

i read briefly that some vaccinations AFTER and IVIG could be harmful and you would want to hold off for a certain period of time.

My son is NOT up to date with vax and our Dr. mentioned IVIG as a possibility. So I don't think it should be an issue, however I will certainly bring this up at our next appt!

Here is the website....http://www.algonot.com/neuroprotek-lp.php

The triple pill is called Neuroproteck LP

So we finally got in to see Dr. Bradstreet in Buford, GA yesterday. AMAZING experience. He is a genius. the man knows so much about the immune system that it was baffling. I needed for him to dumb down a lot of what he was getting into because it was over my head. He has a wonderfully kind personality, no God complex and he took to ds immediately and vice versa. He even gave me his cell #!!! We went over all the testing that I wanted to do and we prioritized based on what he thought would give us the most actionable information. We did and OAT in the office and will be giving blood next week for: Lyme, MycoP, H. Pylori, Immune pane (IgG, IgA, IgM, etc) and a cunningham test. He feels that he will be able to tell based on cunningham test if ds would benefit from IVIG. We are also testing nagalase which is an indicator of low macrophages and if they are low then we will be getting GcMAF. He gav eus Vit D3 and Krill oil immediately and sent me to a website to buy Luteolin,Quercitin and Rutin in this one capsule that is supposed to boost Mast Cells. He feels that DS is triggered by Strep as well as allergies to food and environment. He feel positive about ds's outcome. I guess the tests will tell us more as far as any other infections. I feel like we are FINALLY in good hands and the great thing is that he has treated my friend's son with fantastic results. Right now ds has come off a flare triggered by brother's strep and seasonal allergies. Allegra has helped us tremendously. Bradstreet also wants us to go on prophylactic abx because he thinks everyday is too much. However, I don't want to change the protocol until he is tic free. I am so afraid of a regression once off the abx!!!!! All in all it was a very positive visit and I am feeling hopeful.

I'm about to update on our new Dr. experience but its funny that this was posted just now. Our new dr. is on the cutting edge of research when it comes to macrophages and GcMAF. I believe he will be prescribing it to ds!

UPDATE: friend's daughter's tests came back with high titres for mono and strep. Could this be causing the seizures? If so what should she do? Abx? Anti virals? She is seeing a neuro right now. Should she get a new Dr.?

i am also exploring essential oils for inflammation. Copaiba is a wonderful oil for inflammation and I have been giving him that orally (2 drops) in his applesauce daily. However, I noticed one day that he increased his tics right after I gave it to him so I stopped. Many people sing the praises of Copaiba for reducing inflammation and tics. i will try it again at some point to see if it has the same effect on him.....

Tics are our main symptom here too. During an exacerbation we will see ADHD, a little OCD and some changes in voice (baby talk). However baseline and flares are tics ONLY. Baseline is almost tics free for us and I am hoping we can get back there. DS has motor and vocal tics - pretty much every kind you can have besides copralalia (cursing). Before our PANDAS dx we changed his diet significantly - we went GFCF corn free, low sugar, killed yeast and partially addressed methylation. We supplement with glutamine, NAC, probiotic, borage oil, GSE (for yeast) and a methyl B complex (for methylation). This helped him get back to virtually tic free......until he got strep again. once we got the dx of PANDAS he went on azithro 75mgs daily which got his tics back to baseline. But with each flare they came back so I upped his dosage to 150mgs of azithro daily and they went back down. Recently his brother got strep and seasonal allergies have been bothering him. So of course another flare. Mind you we are only talking tics as his symptom for the most part. He is fully functioning in school - no IEP of 504 and tics are mild in school according to teacher. We found that by treating his brother for strep and adding in Allegra for allergies we were able to reduce his tics back to baseline. Praying that is stays this way for a while......

Ok well then listen to this. So nonPANDAS ds is on amoxicillan for strep. They gave us about 15-18 days worth instead of the regular 10 days. Should I give it ALL to him just to make sure the strep is really killed off? I will take him back for a follow up swab but wondering if I should put him on a longer course just because i have it.

Is S. Salivarius that same as lactobacilis salivarius?

I am beginning to think seasonal allergies are playing into our most current flare (in addition to brother having strep). Everything is blooming here in the ATL and yesterday it was so windy and all the pollen was being blown around. DS had a runny nose a couple of days ago and I think he is having seasonal allergies even though he has no other signs of it. I gave him some children's Alegra this morning. Since this is an anti-histamine will this make the tics worse? Has anyone had any experience with flare and seasonal allergies, if so did you use allergy meds, did they work? Thanks!!

qannie what you describe is EXACTLY how I feel. I hear EVERYTHING. To most other people these tics are not really that noticeable (except if he is screaming on the top of his lungs). But to me even the littlest ones are enough to send me over the edge. I am ok with the ugh ugh throat clearing, tongue movements (because they are silent) and sucking teeth because its kind of a "normal" noise. But the "eh eh", "breeeets", spitting, gagging, hocking a loogie and SCREAMING are all cause for me to get into the fetal position. Not to mention the motors which can be very forceful head jerks and arm flaps. We are definitely in a much better place then last Nov and the previous May. In May of 2013 on Mother's Day weekend, ds was so debilitated, screaming on the top of his lungs about 80 times a minute, no eye contact, running around aimlessly, throwing himself on furniture and at people. I thought we would need to go to the ER. At the time we did not know it was PANDAS, just TS, ADHD, OCD and anxiety. Thankfully school was out at that point and we battled through with diet changes and supps over the summer. We were at the pool everyday and it was a loud place so most people did not hear his yelps and screams. Or if they did, they kind of blended in with all the other noise at the pool. It took 4 months but by the time we reached GFCF and corn free, treated yeast and started on a B complex we had him back to almost 99%. This is truly a roller coaster and you are never prepared for the next ride down. Although hearing you say that it gets better makes me have some hope that I will continue to be better equipped to deal with this. The goodnews is that we are finally going to see an MD that knowswhat he is doing. Our pedi is great and our integrative MD is great but they have limits when it comes to peeling back the layers of this disorder. Or new Dr. is going to run all the tests, see if IVIG is warranted, check for co-infections, CVID, and other things that I have never even heard of like nagalase levels to see if he would benefit from GcMAF shots. He is pretty cutting edge so I am hopeful. But I would be no where without the support of you amazing MOMS!! This is a lonely disorder and most friends of mine don't get it. They don't ask about it or care to know because everything I tell them is over their head and too much information for them to process. I feel like an MD when I talk about it. Good news is that this morning ds's tics were down. I still gave him 150mgs of motrin and sent him off to school but i can tell that slowly we are moving in the right direction. As for non-PANDAS ds, it wil always be in the back of my head. He is on 10 days of amoxi for the strep infection and they gave us more than 10 days so I will give it to him until it runs out just to be sure. Then I will re-swab him to see if the infection cleared. I think if he winds up having PANDAS his case will be less severe because we will have caught it immediately. Those are the cases with the best results, right?

Thanks for the moral support ladies. You are the best. I felt so alone today. But I think my anxiety is causing me to expect the worst and project the worst. Today overall was a little better. I think pandas ds has plateaued with his flare (crossing fingers). Non pandas ds didn't say anything out of the ordinary and was pretty well behaved with the exception of being over tired at bed time. One week till we see the new dr. I wish I could press fast forward. 23andme notified me that our sample was not enough to collect DNA so we have to do it again arghhh

Very good point! i think he does feel guilty about bringing home the strep. We have had to keep them separated for the past three days. Very interesting. I think he spit on the mirror impulsively. He felt about about himself afterwards according to what he communicated to me. you are right, I think EVERYTHING is PANDAS. EVERYTHING. I am really not handling this very well and I have been in it for almost a year now. So you would think I would be getting better at handling this. I will make sure he knows that I am a safe person to talk to should these thoughts come up again. i am praying it was only a one time thing since he probably is going through a lot right now and our whole house is high anxiety.

So you may have been following my story. Non pandas DS has strep and is setting off a flare in my PANDAS ds. They are twins (fraternal). Non PANDAS ds has never shown any signs of PANDAS. He is a very even keeled kid and pretty rational. He is high energy and doesn't listen all the time but he is 6 so I chalk it up to normal behavior. Last night he was prushing his teeth and instead of spitting in the sink he spit all over the mirror. DH punished him. While I was tucking him in for bed he seemed very sad so I asked him what was wrong. he said he wanted to kill himself. I was FREAKED OUT. I asked him why and he said because he is bad and has bad thoughts. So I asked him what his bad thoughts were and he said it was things like eating candy and drinking lemonade (Things I don't allow him to do anymore sinc we are on clean diets). So I told him those things were not bad thoughts and that he is not a bad child at all and that we love him and would be devastated if he hurt himself. He promised not to ever say anything like that again. He saw how upset it made me. So now do I freak out and go insane that I have 2 PANDAS kids on my hands? Or is this just a normal thing that 6 year old tend to say when they are feeling attention deprived. Does this sound like PANDAS? I mean he has no other symptoms at all. I don't want to make things up that don't exist but I will tell you last night freaked me out. I am keeping a close eye on him. It just bothers me that this happened while he is on abx for a strep infections. Thoughts? Please talk me off the edge.

Right now I'm treating the flare ( which seems to be getting worse each day) with Motrin. It's all I've got left in my bag of tricks. You think I can make it through till next Wed? ThT is when we see new pandas dr.

Wow that is really interesting. I wasn't aware that the abx eventually stop working. Ugh and I'm just trying to find the right one to get him back to baseline so we can take a break from abx this summer or at least go on prophylactic.

Hi Teri. Thank you, that was like a cyber hug my son is 6 and 37lbs. We have not seen a "real" pandas dr. yet and that is why his dose is so low. He was originally put on 75mgs back in Nov and I had to beg to pedi to increase to 150mgs. We saw improvement on the 150mgs until the strep infection from his brother. On the 19th we will be seeing our first real pandas dr. He understands the immune system and is well versed in testing for co-infections and looking at IVIG a possibility. I believe we are just not seeing the whole picture and need to test more. Allergies could also be an issue. We are in GA and they are starting already. Ds has had a runny nose for the past three days....

Don't you all think I should run more tests to see if he has any co-infections first before IVIG? What happens if we just aren't treating the infections properly? Maybe the azithro is not the right abx for him? I had him back to baseline practically on the 150mgs of azithro before his brother brought strep home. i do think he is responding to the abx but he just keeps getting assaulted by the darn strep! I will also test his immune system to see if he would benefit from IVIG. i will not rule anything out. I am just so scared right now. I gave him 150mgs of ibuprofen this morning to help at school. He has mainly one tic that he does often and its the "ugh" sound. Its almost like a throat clearing but not quite. He can still function in school so its not a crisis right now but I feel like I am going to die.

I pm'd you qannie. Thank you for reaching out. I will consider it for sure but when you read my pm you will understand the the things I need to do first and some of the obstacles we face. We just can't catch a break and his behavior is a little off too. Not much eye contact and was not interacting with his classmates at a birthday party today. He was more content playing by himself.

So now this is the 2nd time since January that my non-pandas son has brought home strep. It went like this PANDAs ds had elevated tics for one day. The next morning his twin complained of a sore throat. When he got home from school his throat was still sore and it looked red so I took him in for a culture. Rapid strep was pos! We also did a 48hr culture on PANDAS ds and so far no call. I would be amazed if he got strep while in 150mgs of azithro. But I guess you never know. Anyway, ds's tics are elevated right now. Lots of ugh ugh grunting. Some spitting and I thought I saw an eye roll in there too. They put his brother on amoxicillan for 10 days. i wanted a stronger abx but they did not want to give it to me. So anyway we now have to battle through another flare. When will it end? So my question is: will PANDAS ds recover more quickly this time since its his brother that has the infection and not him? I remember him recovering pretty quickly in January after his brother was on abx for a couple of days. Back in Nov when HE was infected it took a month and a half to see real resolution of the tics. I sware to you these FREAKING tics!!!! I hate them with every single morsel of my soul. They are killing me. A slow and very painful death.