cara615

test.....

I am not sure how much copper can change in 1 year but he had it tested last year and he was normal. Funny thing is that his ammonia levels were normal too last year. i am surprised that they were base don his mutations and how much homocystiene he probably has in his body.

llm - i can't begin to thank you enough for taking the time and including detailed explanations as well as links. You ROCK. Seriously. i have stopped the NAC now (DS is psyched!) and I hear you on the animal proteins. I was thinking of possibly adding something like Yucca to get rid of excess ammonia (which I know he has). But he does need his proteins from animals - he is 6 and growing boy! I'll let you know what Bradstreet has to say about this as well. But I am going to check out those vitamins you suggested. THANK YOU

This is what I have learned so far: VDR bsm +/+ he may not need Vit D3 because he may have enough already converted into D1,25 MAO-A R297R +/+ slow breakdown of seratonin. This explains the high levels of seratonin in his blood work. BHMT 08 +/+ this converts homocystiene into methionine and can affect attention and stress levels MTR A2756G +/+ this also converts homocytiene into methionine and indicates the need for methyl B12 MTRR A66G +/- needs more methyl B12 MTHFR C677T +/- elevated homocystiene and risks for heart disease and stroke among others CBS C699T +/- and CBS A360A +/- limits homocystiene into downstream path and does not handle sulfur based supps well. So now to process this! I need to remove the NAC and possibly the Vit D3. Start giving him methyl B12 (I already do but may need a better brand or dose). But what else..... hoping Bradstreet will weigh in.....

I sent the report to Bradstreet but was wondering if these mutations were particularly worrisome. I see he has 2 heterozygous CBS mutations and I have been giving him NAC daily for over a year (sigh) VDR Bsm rs1544410 TT +/+ MAO-A R297R rs6323 TT +/+ MTHFR C677T rs1801133 AG +/- MTR A2756G rs1805087 GG +/+ MTRR A66G rs1801394 AG +/- BHMT-08 rs651852 TT +/+ CBS C699T rs234706 AG +/- CBS A360A rs1801181 AG +/- Thanks in advance!

So I started the CBD oil again (RSHO) but this time a tiny little dot. Today is day 4 and I think its helping with inflammation. Vocals are back down to barely nothing and motors are super low as well. I know when things are going well because i can "breathe" and my anxiety is lessened. His tics are not the #1 thing on my mind every waking second and I can actually think about other things. Good news is that he is doing so well in school and has been selected for the gifted class evaluation. The teacher says she barely notices any tics and the kids certainly don't. DS is a pleasure to have in the class apparently and I am very happy to hear this. Hoping and praying that this can only continue. From what I have heard about CBD oil, flares although still occurring are shorter and the bounce back is quicker. Hoping this is true for my DS as well.

We use Beth Monterosso from Brooklyn NY. We skype with her. We love her. Although DS's symptoms (tics) are still here, they are pretty mild and we are "dealing" well at the moment. Beth gives a constitutional remedy as well as many nosodes depending upon symptoms. I would give it a try. i would also explore CBD oil. We are starting it and i am hopeful!

We had terrible OAT results 6 months ago. High yeast, bad bacteria, clostridia and the likes. The only thing that cleared it up for us was BRAVO probiotics. It took one month and his gut was back to normal. His vocal tics also resolved to about 95% as well so we knew it was doing something. its expensive but its the only thing that will bring the gutbiome back to normal levels while still on abx. We eventually went to a prophylactic abx protocol which allowed for even more gut healing as we had more time to let the BRAVO do its work in between doses. If you want more information, pm me. Cara

I just found out that the RSHO is wayyyyyyyyy more potent then the bluebird botanicals. I had no idea. The dose i gave my son of the RSHO was equal to about 25 drops of the bluebird!! i started way too high! i will back down as much as i can or i will order the bluebird botanicals. Nuff said.

I take that back. About an hour after i gave it to him he started ticcing more. Some old tics coming back and his current ones more frequently. I got so nervous. I texted Bradstreet, he said to give way less tomorrow. So 1/2 of a grain of rice. WOW i guess this stuff is pretty powerful.

Ok I gave in and gave him a rice sized drop of the oil in Almond butter. he swallowed it with no problem. So far nothing. I am haering it will take about 5 days to see anything.

We got our first tube of CDB hemp oil from Hempmedspx. I was told by Bradstreet to give a rice sized amount in a spoonful of almond butter (DS does not swallow caps). Should i wait until Saturday? I was thinking it may not be a good idea to start during the week when he is in school. As far as what to expect: when did you see a difference? Did it help with tics? I am giving it to reduce inflammation because once we can reduce inflammation DS's tics tend to reduce as well. Does the CBD need time to build up in the system? Any adverse effects i need to be aware of? Thanks in advance for all of your help!

YES!! I love this update. Love it! We have been doing Bentonite clay baths to pull out metals and deposit minerals, wondering if I should give something internally.... DS does not have a metals issue but whenever I give him the clay bath his symptoms lessen the next day.

i can call him ask him for more abx but I just started giving copaiba essential oil and its helping so we may be able to stop the NSAID. In addition, CBD oil arrives today!!!! i can not wait to try it on him. I will wait till the weekend though, can't test out new things on a school day.

SSS - i hear you. I have a unused bottle of augmentin in the fridge from June. I have no idea if its still potent but i have though about giving it to him. I don't know what to think about this current flare really. My gut tells me its another infection for sure. But maybe its viral this time? i just don't know. Bradstreet thinks its totally exposure related and is not entertaining any additional abx at this point so its the augmentin in the fridge or nothing. once the CBD oil comes in (this monday) I will test it out to see if we can manage with that. Assuming this flare is due to a viral trigger, i am hoping the virus will eventually die. If not, then we will need to start testing for other infections. I have a list of things we are going to test for. I am giving it 2 more weeks.

Mary - you would need to know my history. We were on daily abx from Nov 2013 to May 2014. We tried a couple different ones. They helped but did not get rid of the tics 100% and instead destroyed my son's gut. He had yeast, bad bacteria and clostridia as well. This is with daily probiotics of 100bill and grapefruitseed extract for yeast. The daily abx were horrible for him. So under the advice of our PANDAS Dr. who is very knowledgeable in my opinion we moved to a prophylactic dose (2x a week). We started BRAVO probiotic which cleared up my son's gut within one month and all of his vocal tics went away. i would really choose to stay away from daily abx because 1) it does not get us tic free 2) it destroys good gut flora 3) i don't see it as a PANDAS solution However since I don't have the ability to home school because I work and need my salary to pay for all of DS's medical bills, he does need to be protected from infections. Homeschooling is not as easy as just pulling your kid out of school. Major changes need to happen at home (like me not going to work).

I PROMISE to test for co's before i give any steriod! I realize there is a long checklist of things to do/rule out that is in front of me right now.

I haven't but i guess its an option. i will talk to Bradstreet about it at my next consult.

So should I expect this flare to pass as his immune system becomes more acclimated to the infections he is being exposed to? I think we are on the path to healing right now, even though he is flaring. Its just hard to see it when the only thing controlling his motor tics is Mobic (a prescription NSAID). Hoping CBD oil is more powerful than the Mobic. I do realize that we need to rule out Co-infections. But all his titres for strep, mycoP, EBV, etc are normal. i just don't know what the course of healing is supposed to look like. The good news is that his vocals (which used be horrific) are practically gone. Now its just motors. However, the motors are not that mild when he is flaring so we are not perfect. But again, when we first started we were ADHD, OCD, TS and anxiety. Now we are just motor tics so I guess we came a long way right? UGH this is so hard.....

Homeschooling is not an option. I work from home and would not be able to do both at all. Without my income we would not be able to afford the thousands I spend on my son to help treat this awful disorder.

Ha! We just had to deal with this. DS is 6 and he has some head nods right now and one of his classmates asked him why he was "doing that" with his head and my DS said "stop asking questions!!" LOLOLOLOL I couldn't stop laughing when he told me. My kid is no nonsense. LOL But if I could draft a good response to this question, I would tell your DS to say that he has allergies and his allergies are causing him to clear his throat. I know that may not be good for everyone but I think since so many kids have allergies these days, its pretty "cool" to have them and then no-body asks any more questions. what do you think?

Our Anti-tubulin was at 8,000 but everything else was normal (except D2 which was not available). I am being told that the anti-tubulin titres are associated with tics.

We were trying ENHANSA and it wasn't helping Is the brand you are recommending more powerful?

i don't have an answer but I am right there with you. DS's motor tics have increased and his vocals are starting to show themselves although still extremely mild. the things I have pondered over are: Allergies Yeast overgrowth Strep exposure common cold BRAVO probiotic not as effective since I bought the easy formula For allergies I was giving Allegra but nothing changed in his tic level so I assumed it was not allergies for yeast overgrowth we do homeopathy candida remedy but i just called in another round of diflucan just to cover my bases for strep, i took him for a rapid with culture and both were negative but that could be because he is on azithro 2x a week?? his nose has been runny maybe he has a common cold that i causing the flare? BRAVO probiotic is a yogurt that i ferment myself. They send me the ferments and this last order I got the "easy kit" as opposed to the one that takes 3 days to make. i didn't realize the package was outside my house for a couple of hours and it was hot out that day. I am thinking maybe the bacteria died? However, I would think if that were the case then the yogurt wouldn't ferment at all and it is still fermenting. So I just don't know. We have been treating with motrin 2x a day for a week now to keep the tics at a low level. He tics constantly but they are very mild so its hard to notice unless he is doing some serious head jerks. But Motrin is not something you can give long term so I ordered CBD oil and our Dr. called in Mobic. I will try Mobic first and then once the CBD oil comes in, I will switch. Hoping we can control the inflammation. I think this all boils down to inflammation unless there is an infection that we are not aware of. We may need more testing for co-infections like Bart if we can't get this flare to go away. Sorry for my long drawn out response, maybe I gave you some ideas from my brainstorm.

OK hmmm. Lots to think about here. Interesting that your child has Bart but NOT Lyme. We tested neg for Lyme through Labcorp (I know, I know its not IgenX) and we didn't have any + or IND bands but i would like to get the IgenX test at some point too. i will mention both Bart and Mold to Bradstreet. i am aware of mold causing tics so I do my best to remove all sources of it especially in bathrooms etc. Our house is new construction but i know mold can be anywhere. i know we are missing a piece to this puzzle and for now i am trying to manage inflammation to lower symptoms. But i need to get back on the lab test train and try to get some answers to methylation and possible co infections. i hear you.