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cara615

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  1. Like
    cara615 got a reaction from Adatjie in How long does Magnesium take to see improvement?   
    Thanks Chemar, we have only given him 1/8th of a tsp for 4 days with good results. i was thinking of keeping him on it until schools out and then let the summer take its course. Not sure how to wean down from 1/8th of a tsp but I will try.
     
    As for the Magnesium, maybe he does not need the calcium. Maybe I just need to give him magnesium alone.
     
    I have the name of a great holistic pediatrician that I am going to take him to. I need to be under a physicians care with all these supplements and his regular pediatrician can only help so much. At first she said GABA was great! But when I asked her how long can I give it to him for she did not know.
     
    That post from Dr wellness is scary because he mentions that after coming off of GABA the body becomes deficient in it! makes me think i could be hurting him by evn giving it to him.
     
    i would rather get the whole magnesium supplement correct because that IS something I can give him long term without harmful side effects. Have you heard of cases where just Magnesium alone or magnesium Taurate helped better than the one with calcium?
     
    By the way, thank you for consistenly answering all my questions
  2. Like
    cara615 got a reaction from AprilP in How long does Magnesium take to see improvement?   
    We had a lengthy appointment with our new holistic/integrative medicine pediatrician yesterday. She did some chinese medicine testing on my son. It came up as digestive/spleen/bladder which is his immune system. She is suspecting leaky gut caused by a food sensitivity. But more testing still needs to be done. We will be testing for food sensitivities, heavy metals, candida, and everything else under the sun. For now she has recommended that we start on glutamine and a heavy duty probiotic (for gu repair), protein supplement, magnesium + taurine, carnitine (brain), and GLA for metabolism because he came up iodine deficient. In addition an omega 3 supplement (which we already do everyday). I am to introduce 1 supplement every 3 days to make sure there are no adverse effects. Today we started with the glutamine and the probiotic (since we have been doing a probiotic already).
     
    We also have to slowly go gluten free. I am also trying to go low dairy as well but its hard as my son is so tiny and needs as many calories as he can get. Today has been day 1 and we had eggs and bacon with a side of organic yogurt and OJ for breakfast. Organic grass fed hotdog and gluten free white bread with apple sauce for lunch. Snacks were gluten free cheddar crackers. I need to get my son to drink a smoothie this way he can get all he supplements at once and not notice them. i have been preparing him about the smoothies, Hopefully he will comply. He is 5 and a terrible eater. I mean TERRIBLE.
     
    the doctor says that she is seeing A LOT of this leaky gut and kids with sensory issues, tics and many disorders along the autism spectrum. She thinks there is a huge connection. However, she says each case is very individual and that there is no set cocktail of supplements that will help each child. So we are going to have to "play" around until we get the right recipe. Hopefully all the testing will lead us in the right direction.
     
    I am relying on a lot of prayer as well. .
  3. Like
    cara615 got a reaction from SSS in CBD oil - when to start and what to expect   
    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.
  4. Like
    cara615 reacted to MomWithOCDSon in Update: I Need to Brag   
    I need to brag, and so few people in the "real," non-PANDAS/PANs world will understand . . . so I come to you guys!
     
    DS has had quite a road, and he keeps coming into his own, little by little, every year. He's now in his senior year of high school and our big accomplishment this past summer was the three weeks he spent on a college campus, living in a dorm with a roommate, eating at the cafeteria and attending an engineering "camp" designed for rising seniors, with college instructors presiding. That experience wasn't without challenges, but we threw him in the deep end, and he swam! Actually came away from it convinced that, in another year, he will indeed be ready to leave home for the "full-bore" college experience.
     
    Still, he started his senior year with some anxiety and return of his nemesis of all OCD behaviors: contamination. No dramatic "flares," really, but just the creep and crawl of that insidious beast.
     
    So when his AP Calc teacher called us last night, merely for the purpose of telling us what a joy DS is as a student, how bright he is, how he asks deep, thoughtful, creative questions rare of a math student of his age, how respectful and polite he is in class, how grateful this teacher is to have him to teach . . . I almost cried. DS has enjoyed academic success, yes, particularly once we got him effective PANDAS treatment. But as a 2E kid to begin with, who also has a tendency toward high anxiety, he's rarely appreciated to this extent by his instructors. More often than not, they cut him slack on the one side (keeping up with production requirements, occasionally behavior) because he performs so well on the academic side (particularly testing which, interestingly enough, the anxiety doesn't seem to grab a foothold in). But genuinely appreciate him? Even seem to flat-out like him? That's rare!
     
    I guess I'm bragging almost as much on this teacher as I am on DS . . . in my book, they're BOTH keepers!
     
    Thanks for listening!
  5. Like
    cara615 got a reaction from WorriedDADNMOM in Anyone have research linking vaccines to ASD?   
    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.
  6. Like
    cara615 got a reaction from SSS in That start of school and a new flare   
    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.
  7. Like
    cara615 got a reaction from mgullion in Where to begin? 7 year old son and tics   
    Here is my 2 cents. A Tourette's diagnosis is a clinical one. The motor and vocal tics need to be present for at least a year then they will give that diagnosis.
     
    Your son sounds a lot like mine with the tics coming one by one and then going away and coming back as different tics. It took me a full year and a half before I realized this could be a tic disorder.
     
    here is what we did first. We got an integrative MD who did lots of food sensitivity testing. We specifically did the ALCAT test which tests over 50 foods. We found that our son was intolerant to CORN, GLUTEN AND DAIRY. Our son was also a VERY picky eater since birth and i was terrified of removing all these foods.
     
    Keep in mind that you don't have to remove them all in a day. its a process and it takes time to figure out the replacements. There are tons of websites with recipes for gluten/dairy and corn free foods so its not that difficult to accomplish.
     
    The big thing that got my son eating more was removing SUGAR. once I got rid of almost all sugar from his diet (including fruits with high sugar content) his appetite blossomed. he started eating salmon and broccoli, grilled chicken and turkey. Its amazing how sugar can suppress a child appetite and make them only crave sweets.
     
    After removing all of these food sensitivities from our son's diet we saw a reduction in his tics. We also found out that he had yeast in his gut so we added grapefruit seed extract (4 drops) to 7mls of OJ, 2x a day and this helped to kill off the yeast. We saw another dramatic decrease in tics once we did this.
     
    His body is reacting to allergens most likely so your pediatrician is correct in saying that however i don't believe its always environmental (although it could be). That is why a good place to look is the diet. At least as a starting point.
     
    our story goes off in a different direction because our son was eventually diagnosed with PANDAS after an asymptomatic strep infection that i happened to catch last November but without these diet changes he would not be in the place he is today.
     
    He had slight ADHD/OCD like behaviors when this all started but once I removed the gluten/dairy and corn all of that went away. We were just left with tics which also decreased to the point of no one noticing them.....until the strep infection of course.
     
    Please feel free to PM me if you have any questions. I believe Tourettes occurrs when the gut is not healthy. There is a huge gut brain connection and if the gut is not working properly then the brain can take the brunt of this.
  8. Like
    cara615 reacted to SSS in Cunningham Results are back and not sure about what they say?   
    I shouldn't have wrote 'wow, no PANS'
    that was dumb of me- I'm sorry, what a dork.
    I am very tired today, too!
    I did just go read Moleculera Labs website after realizing I probably shouldn't be commenting on old knowledge from a bad memory, and
    it does not say the Cam K number is THE number,
    rather it looks at all 5 results,
    oh and by the way,
    it's a clinical diagnoses,
    and I am not a Dr. nor a genius,
    sorry again!
     
    Wish I had something witty and encouraging to end here with (where's LLM?)
    but instead know I'm sending you good thoughts fellow mama, and you are not alone.
  9. Like
    cara615 got a reaction from JuliaFaith in BRAVO probiotic. We are starting it...   
    The probiotic is a yogurt once its all made. It tastes exactly like plain greek yogurt but a littl emore liquid consistency. I put a teaspoon of it into applesauce (you have to start very slow) and mix it up. Both my kids take it and actually like it.
     
    As for other probiotics, they do not work nearly as well. The BRAVO has been a game changer and i think its because of the GcMAF which is in there. The GcMAF activates macrophages which eat viruses and bacteria. The BRAVO is creating a whole new gut biome for him.
     
    So since his tics were primary from the clostridia and gut dysbiosis then the BRAVO is what he needed. So no matter the symptoms, if they are because of an unhealthy gut, this probiotic would help for sure.
     
    They also came out with a 24/hr process instead of the 3 day process and its $300 Euros for a 3 month supply. Much cheaper than the $860 I paid for a 3 month supply. They say its the same exact thing once its all fermented into a yogurt.
     
    i hope this answers your questions!!
  10. Like
    cara615 got a reaction from SSS in BRAVO probiotic. We are starting it...   
    2 weeks on BRAVO and on a scale of 1-10 with 10 being debilitated, DS is barely a 1. Vocals almost ALL gone. If I hear one its a seldom occurrance. He has one motor that he does occasionally which looks like he is trying to shake water off his forearms. And while we are at the pool it looks totally normal.
     
    Even that tic is pretty mild at this point too.
     
    i am starting to cook up my 2nd batch of this stuff. Its pretty powerful and all i can say is WOW.
     
    so if you have a child with severe gut biome issues (bad bacteria, clostridia, dysbiosis of any kind) this is your mercedes of probiotic. And trust me, its just as expensive as a mercedes too!
  11. Like
    cara615 reacted to Sheila in tics are back. What could it be?   
    Hi tstryker, It sounds like you've made some good progress with your son. We know that setbacks are tough to take though.
     
    A couple of things struck me. It would seem that your own observation that tics are typically worse in the spring and the fall could contradict what you were told by your naturopath --that there were "no environmental allergies." I would not assume that statement to be accurate—or perhaps it is a difference in terminology and there are intolerances that don't fall under her definition of allergy. Or maybe she was talking about that particular testing day?
     
    No one gets it right all the time, especially if this was based on muscle testing which is an approach some find helpful, but results can vary widely. Don't let that comment keep you from exploring environmental possibilities.
     
    You were also told by her at the time that there were no major food allergies, yet you have noticed foods that make the tics flare: corn, soy, food dye, nitrates. It's great you have been able to figure that out on your own. Whether your son is experiencing classic food allergy or an intolerance or sensitivity, focus on your own observations.
     
    I'd start watching with an open mind for what might possibly be playing a role at home, school (in school?) or outside the home.
     
    It might be a good idea to print this list below and think about what might be involved. Could you let us know what you suspect on this list?
     
    http://ticsandtourettes.com/downloads/acn_tics_triggers_checklist.pdf
     
    By the way, we are preparing an article on mouth appliances and will ask the specialist about letting teeth grow in.
     
    Wishing you lots of luck and hoping to hear back from you, Sheila
  12. Like
    cara615 got a reaction from JuliaFaith in BRAVO probiotic. We are starting it...   
    OK i have been afraid to type it but this is the 3rd day in a row where his tics are the lowest I have seen since last October or before. Dare I say it, but BRAVO is WORKING.
     
     
    Now my son's biggest issue is his gut health. i know from a recent OAT test that he had yeast, clostridia and tons of bad bacteria. The clostridia and yeast were most likely the cause of his most recent ticcing especially since his strep titres are finally back to normal. He also tested neg for MycoP, EBV and Lyme.
     
    So for anyone that is in a similar situation with their child and can't seem to get the gut back in order, BRAVO seems like a real option. I can't believe how powerful this stuff is. I have only been giving him 1/4 - 1/2 tsp 2x a day.
     
    Since its a milk based probiotic i was nervous about giving it to him since he is dairy free but that does not seem to affect him at all. Its more about the good bacteria and the GcMAF that in this stuff.
     
    i am very hopeful about this.
     
    DS is doing very very well right now.
  13. Like
    cara615 got a reaction from SSS in BRAVO probiotic. We are starting it...   
    OK i have been afraid to type it but this is the 3rd day in a row where his tics are the lowest I have seen since last October or before. Dare I say it, but BRAVO is WORKING.
     
     
    Now my son's biggest issue is his gut health. i know from a recent OAT test that he had yeast, clostridia and tons of bad bacteria. The clostridia and yeast were most likely the cause of his most recent ticcing especially since his strep titres are finally back to normal. He also tested neg for MycoP, EBV and Lyme.
     
    So for anyone that is in a similar situation with their child and can't seem to get the gut back in order, BRAVO seems like a real option. I can't believe how powerful this stuff is. I have only been giving him 1/4 - 1/2 tsp 2x a day.
     
    Since its a milk based probiotic i was nervous about giving it to him since he is dairy free but that does not seem to affect him at all. Its more about the good bacteria and the GcMAF that in this stuff.
     
    i am very hopeful about this.
     
    DS is doing very very well right now.
  14. Like
    cara615 got a reaction from rowingmom in BRAVO probiotic. We are starting it...   
    OK i have been afraid to type it but this is the 3rd day in a row where his tics are the lowest I have seen since last October or before. Dare I say it, but BRAVO is WORKING.
     
     
    Now my son's biggest issue is his gut health. i know from a recent OAT test that he had yeast, clostridia and tons of bad bacteria. The clostridia and yeast were most likely the cause of his most recent ticcing especially since his strep titres are finally back to normal. He also tested neg for MycoP, EBV and Lyme.
     
    So for anyone that is in a similar situation with their child and can't seem to get the gut back in order, BRAVO seems like a real option. I can't believe how powerful this stuff is. I have only been giving him 1/4 - 1/2 tsp 2x a day.
     
    Since its a milk based probiotic i was nervous about giving it to him since he is dairy free but that does not seem to affect him at all. Its more about the good bacteria and the GcMAF that in this stuff.
     
    i am very hopeful about this.
     
    DS is doing very very well right now.
  15. Like
    cara615 got a reaction from Mommy2MCL in BRAVO probiotic. We are starting it...   
    I can tell that this is going to be a process. Gut healing takes time. 1 week on BRAVO and I am slowly increasing the dose to 1/2 tsp 2x a day. This stuff is supposedly so powerful that you have start out very slow.
     
    His poops are amazingly healthy looking too.
     
    Tics are still there but gradually, gradually............ i can't even type it....i don't want to say
  16. Like
    cara615 got a reaction from rowingmom in BRAVO probiotic. We are starting it...   
    I can tell that this is going to be a process. Gut healing takes time. 1 week on BRAVO and I am slowly increasing the dose to 1/2 tsp 2x a day. This stuff is supposedly so powerful that you have start out very slow.
     
    His poops are amazingly healthy looking too.
     
    Tics are still there but gradually, gradually............ i can't even type it....i don't want to say
  17. Like
    cara615 got a reaction from JuliaFaith in BRAVO probiotic. We are starting it...   
    So I spoke to Bradstreet about how to handle abx. He wants to keep DS on them for at least a month of the BRAVO. Apparently the GcMAF in the BRAVO will help even with the abx in his system. I still give the BRAVO in the middle of the day and at night as far away from the abx as possible.
     
    From what i have exeprienced, ds still needs the abx because everytime i try to wean him, the tics become constant. When I put him back up to recommended dose, the tics become very mild. Its crazy and I hate it but if he needs it to keep inflammation down then so be it. Abx works better than ENHANSA at controlling inflammation (at least for us).
     
    Right now we are only on week 1 of BRAVO and I can't say that its been a miracle, but it hasn't made anything worse so that is a good thing!!
     
    We will do a repeat OAT in a month to see how his gut has fared so far.
     
    right now tics are a 3 on a scale of 1-10 with 10 being the worst. He also does not have any behaviors. I think we are in an OK place.
  18. Like
    cara615 got a reaction from kplunkett in BRAVO probiotic. We are starting it...   
    Day 3 on BRAVO probiotic: The first day we say increased tics and even new ones emerge! the 2nd day all the new tics disappeared and we were just left with is head jerks and a couple of vocals. However they were few and far between. Lowest I have seen in a while. So I decided to give him another 1/4 tsp at night to let the good bacteria have lots of time to grow. Today is day three and tics are LOW. They are still there, but LOW.
     
    I am taking BRAVO and so is my other son. I am giving it to my whole family. I am hoping to help out my IBS and clear up my other son's gut as I think he may have dysbiosis as well. (He is NON-PANDAS though).
     
    I hate writing all this stuff because every time I do, things go downhill right after. But I am praying for healing and to get off the abx so optimal healing can occurr.
     
    Slowly, i am reducing his augmentin every couple of days. I'll will keep you all posted on our progress.
  19. Like
    cara615 got a reaction from ibcdbwc in BRAVO probiotic. We are starting it...   
    Day 3 on BRAVO probiotic: The first day we say increased tics and even new ones emerge! the 2nd day all the new tics disappeared and we were just left with is head jerks and a couple of vocals. However they were few and far between. Lowest I have seen in a while. So I decided to give him another 1/4 tsp at night to let the good bacteria have lots of time to grow. Today is day three and tics are LOW. They are still there, but LOW.
     
    I am taking BRAVO and so is my other son. I am giving it to my whole family. I am hoping to help out my IBS and clear up my other son's gut as I think he may have dysbiosis as well. (He is NON-PANDAS though).
     
    I hate writing all this stuff because every time I do, things go downhill right after. But I am praying for healing and to get off the abx so optimal healing can occurr.
     
    Slowly, i am reducing his augmentin every couple of days. I'll will keep you all posted on our progress.
  20. Like
    cara615 got a reaction from JuliaFaith in BRAVO probiotic. We are starting it...   
    Day 3 on BRAVO probiotic: The first day we say increased tics and even new ones emerge! the 2nd day all the new tics disappeared and we were just left with is head jerks and a couple of vocals. However they were few and far between. Lowest I have seen in a while. So I decided to give him another 1/4 tsp at night to let the good bacteria have lots of time to grow. Today is day three and tics are LOW. They are still there, but LOW.
     
    I am taking BRAVO and so is my other son. I am giving it to my whole family. I am hoping to help out my IBS and clear up my other son's gut as I think he may have dysbiosis as well. (He is NON-PANDAS though).
     
    I hate writing all this stuff because every time I do, things go downhill right after. But I am praying for healing and to get off the abx so optimal healing can occurr.
     
    Slowly, i am reducing his augmentin every couple of days. I'll will keep you all posted on our progress.
  21. Like
    cara615 reacted to rowingmom in So when will the flare end?   
    I won't say it .
  22. Like
    cara615 got a reaction from rowingmom in Enhansa   
    Well all I can say is wow. The Enhansa has very immediate results. Ds's tics are almost non existent while we are in the house. If we go outside and play for an extended period of time, the pollen gets to him and he will have some tics (screaming and head jerks are his tics of choice this week - fun times!). But then we come back inside and the tics go away.
     
    i have been giving him 248mgs 2x a day. I just ordered the big jar of it. We are using the tasteless powder that you mix with water. This stuff works better than motrin in my opinion!
  23. Like
    cara615 got a reaction from Mommy2MCL in Enhansa   
    Well all I can say is wow. The Enhansa has very immediate results. Ds's tics are almost non existent while we are in the house. If we go outside and play for an extended period of time, the pollen gets to him and he will have some tics (screaming and head jerks are his tics of choice this week - fun times!). But then we come back inside and the tics go away.
     
    i have been giving him 248mgs 2x a day. I just ordered the big jar of it. We are using the tasteless powder that you mix with water. This stuff works better than motrin in my opinion!
  24. Like
    cara615 got a reaction from SSS in Enhansa   
    Well all I can say is wow. The Enhansa has very immediate results. Ds's tics are almost non existent while we are in the house. If we go outside and play for an extended period of time, the pollen gets to him and he will have some tics (screaming and head jerks are his tics of choice this week - fun times!). But then we come back inside and the tics go away.
     
    i have been giving him 248mgs 2x a day. I just ordered the big jar of it. We are using the tasteless powder that you mix with water. This stuff works better than motrin in my opinion!
  25. Like
    cara615 got a reaction from JuliaFaith in Results of OAT test   
    DS has severe bacterial overgrowth and yeast. Dr. Bradstreet's opinion is that probiotics don't work in most. We have been giving 100bill CFU of Ther-biotic DETOX and 8 drops of GSE per day. Apparently these have done nothing
     
    So he is putting DS on Nystatin and changing abx from Azith to Augmentin. He thinks the Augmentin will help kill some of the bacterial overgrowth. He also thinks that is what keeps Cole ticcing. Its the fact that his gut is all messed up.
     
    He also wants us to try Bravo probiotic as well. its a yogurt that you make and it comes from Italy. I think its like $2,000. I will be in the poor house before all is said and done.
     
    We are also starting homeopathy at the same time. I know that is probably nuts but since there are no interactions it can't hurt only help.
     
    This afternoon i gave him his strep remedy and it really helped to calm all his tics down. It happened instantaneously too. i am somewhat in disbelief but I will give it more time to see how well it really works.
     
    Dr. Bradstreet also mentioned a fecal transplant. oy vey.
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