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Everything posted by Darla

  1. Thanks for the info on the bread and cheese. The bread is at whole foods so thats good, but when I tried to locate the cheese it didn't show up. I will still check though next time Im there. Those two items are big ones to know about, thank you. I spent a lot of money yesterday at whole foods buying food. If the package says GF, does that mean it's CF too? I guess I shouldn't assume anything, i mean I know dairy is obvious but i'm still new to this whole thing. Processed meats and cold cuts etc.. but would the GF food have any? I would'nt think so. I am trying to get my husband on board, he is very supportive but only knows what I tell him, so last night I got home from work and he let our son have a bowl of mini wheat cereal??!! So I'm going to go through the cabinets and take it all out. I think we all have to do this otherwise it's to easy for our son to just take the food that is for the others in the household, like yogurt etc. Then the other thing is butter and drinks. What juices and butter are safe? thanks again.
  2. Hi, Here's an update. On casien free for over a month now. I've seen some improvement with my son willing to comply with me more than usual. No major explosions in behavior with the exception of yesterday I believe that it may have been due to him eating pizza the day before at a pool party. He also snuck ice cream at my mothers house today. He paid for it with diarerra and was dizzy not feeling well out of sorts with a lot of anxiety tonight. So all in all no miracle but improvement. I was hoping that his anxiety ocd and explosiveness would go away. So far the only good thing is there really hasn't been any crazy explosions with the exception of yesterday which I think I know why. I really wanted his anxiety to go away it seemed like it was stronger in a way since coming off the casein. We met with the doctor who suggested we continue on amino acid suppliments we had stopped pretty much in the begining due to his casein withdrawal. It was a nightmare. So now back on all the suppliments and added inositol per dctr. I have decided I think to go full force with this diet and go GFCF not just CF. I want to see if he's got a problem with wheat, barley, rye. I believe that I do, I get hives from drinking beer. I think why not? It's the summer I have to exaust all of my options before going to meds with a clear conscience. I'm looking for resources on if by a miracle there is a store that is all GFCF so it takes the guess work out for me. I am not a good cook, so it's scary/overwhelming to come up with a list. I become devastated when my hope falls to the ground when we have weekends like this weekend. I'm exuasted. The worry about what his life as an adult will be drives me. So I guess the fear of him becoming an alcoholic like my brother because they share such similar behavioral symptoms makes me continue. I feel like it's all routed in autoimmune maybe celiac?? Our doctor won't give "labels". But it wouldn't do me any good anyway. It all seems to start in the gut, If I can fix it then I know the answer. I have also checked in to the SDC diet. Select Carbohydrates diet which is a few steps beyond GFCF, still learning about that one, it's good for people with celiac, chrons, Irritable bowl and anyone with GI problems. So there's my update. Still treking along. Does anyone know of a store in massachusetts that is GFCF?? Or support groups that meet??
  3. Okay so im desperate this weekend. Having a meltdown over the constant struggles here at home. I feel so beat up. The casien elimination isn't solving any behavior issues. Thinking of going GFCF. I am overwhelmed at cooking things from scratch (im not a great cook by any means) so learning about the ingredients and all that comes with the diet is overwhelming at the moment. Where do I start? What staples of food should I have on hand. Are there any specific stores in massachusetts that sell only GFCF? That would make it sooooo much easier for me than hunting down foods that I don't know exsist. If this diet doesn't work I might try the SDC diet. Specific Carb diet, and if that doesn't work then I may turn to meds. I can't in clear conscience until ive exausted every natural avenue. He's on amino acids supp, b6./mag digestive enzymes and inositol all under dctrs advice after testing. anybody out there, please help if you have helpful info. Thanks for listening, im soo exausted.
  4. Hi, Curious if anyone has tried the SDC diet or has read the book Breaking the vicious cycle: Intestinal Health through diet by Elaine Gotschall? thanks
  5. Hi, So my 9 yr old son got back lab work and has a casein intolerance and takes digestive enzymes. He also has very low amino acid levels and his dctr is giving suppliments for that but suggested he take a liquid protein suppliment (that has no casein) . He is not metabolizing protein and it is causing major problems with his amino acid levels. I have tried giving him whey (dairy free/casein free) protein shakes, they are just to much drink for hiim. He needs a shot of it or a liquid dropper of it. The closest thing i've found is by a company called Protica that has a product called Profect. It's like a little tube of protein and the company says that it's hypoallergenic and contains no dairy. They come in 25 grms and 50grms. Has anyone had any experience with this product OR does anyone know of a liquid form that is casien free that is in a small dose but gives a lot of protein? Thanks.
  6. My son had a QEEG done last year along with some nuerofeedback. Now the feedback didn't show any great improvement, however the QEEG proved to be very beneficial to us for our son. I had attended a conference that a man named Dr. Greenblatt ran on biological causes of disease and illness. From here I made an appointment with him to have some labs run and had him look at my sons medical file which included the QEEG. We had an amino acid, oat, hair test done. The things that show up were that all of his amino acids were very low and it a casein allegry from peptides in his urine. So casein in dairy is a problem. He also sent his QEEG away that showed he definatley has ADHD (this is the most definative proof of adhd out there) and would benefit from stimulant medication. It also showed that antidepressants would not likely work for his mood issue, but a mood stabilzer would. Now we are committed to trying not to use meds. So we are trying as of today suppliments that he suggested. Magnesuim P-5-P Plus Pyridoxal 5' - Phosphate with magnesium vitamin B6 matabolite Amino Acid Base Similase GFCF (digestive enzymes) to help break down casien We are switching to soy, rice milk and I was told to pick up some Whey protein from a pure cource. Not at gnc since they use casein as a filler in a lot of their stuff. So we are trying this first for a few weeks and if no improvement in mood etc we will then think about starting him on 2.5 mg of ritalin twice a day so a total of 5 mg a day and see if that helps. His anxiety and irritability (explosive anger) is most troublesome to him and us and if it helps I will do it. I want him to feel better. So Im so glad we got the QEEG done. The Dr. said that a casien allergy can cause anxiety and ocd as it affects the CNS so I am hopeful that these natural suppliments work.
  7. Hi, I haven't been here in a while. My son was diagnosed with PANDAS last year. I did not put him on antibiotics daily ( just not there yet) I felt that the diagnosis came very easily and did not expect it. It was just said as a matter of fact and here's a script for bactrim. Although I figured it out before they did, for some reason I just can't think that having PANDAS and taking antibotics is the end all of it. I just keep pursuing why. He is was recently sick with a virus where he ran a fever and vomited. He is now having major ocd symptoms and developed a tic of clearing his throat. There is some inflammation going on, we are dealing with it. I know it will subside in a few weeks again. But the mood and low frustration tolerance is always there. We have been to a developmental pedi and a neurologist. We have been told our son has Pandas then a mood disorder, adhd and then possibly bi-polar. We just got back from a different doctors appt with a man who believes that there are underlying biological causes of behaviors. He ran some tests and told us it appears his thyroid is off and suggested we have an oat test, heavy metals test and a peptide test done. Now I agree with all of this although I wonder if hes getting an oat test why the peptide. If it shows food allergies then it would be probably that he would have peptides in his unrine?? right?? But I digress... $650 later hopefully we will find out. I have a feeling hes going to have some food allergies that may be the cause the adhd symptoms. What a mess! My brother has hypothyroidsim and another brother of mine has pysorasis. A first cousin has lupas. I believe that on both sides of my parents family autoimmune disease is present. I feel that my son has an inflammatory response and/or it is due to an autoimmune disease. His pedi is going to be calling me tomorrow to go over the results and probably suggest an appt with an endocronolgist ( i hope). I think it may be hashimotos. Has anyone here had issues with the thyroid in their children? Any thoughts or suggestions I would greatly appreciate. What helps with TH1 inflammation?
  8. I was told that liquid form magnesium is the best form to be absorbed, however, it tastes horrible. Does anyone have any suggestions to get my son who is nine to take it? Also, I am trying Betaine HCI tablets (hydrochloric acid) to help his digestive system, but the form of tablet is to tough for him to swallow. Do they sell these for kids to take, maybe I'll purchase them if so?? thanks
  9. Hi Nancy, My son has ocd/anxiety and they are horrible after strep soooo i guess Pandas too. He too has the need to "confess" silly things to me, which I let him do. It bothers him and he hates the feeling of having to tell me something. I don't know if you have tried inositol. It really helps him with his anxiety /ocd. I give him about 1 1/2 grams a day. Hope this helps. Oh btw hes nine yrs old.
  10. I know it's been a few months since i posted this, but im coming across this yet again, and after reading all the benefits of this mushroom, i am going to try it myself, and possibly give it to my son. It is helpful against viruses and with the swine flu scare, it would be worth while. It should be taken with vitamin c so that the body absorbs it.
  11. Hi, Wondering if anyone has used St. Johns Wart, either for themselves or given it to your child? I'm curious about the results good or bad.
  12. Hello, I was researching autoimmune disease treatments last night, and came across this link which spawned a whole lot of reading and learing about this method called MP (Marshall Protocol). I have posted a link to the info that gives some basic information. It looks very interesting and promising for people who suffer from autoimmune disease. It's focus is on inflammation caused by TH1 inflammatory disease. Interestly it revolves around vitamin D and that people with autoimmune disease should not take it as it makes the situation in the body worse. It envolves a theraputic probe to see if you have TH1 inflammatory disease first and then treatment with the MP can begin. It also suggests having a D metabolites test specifically the 1,25-D which is the "other" vitamin D in our body, which will detect if the immune system response is TH1 dominant. If that is the case, they say to stay away from vitamin D as it continues to increase the TH1 inflammatory response. That is why they find that people with chronic illness have high levels of 1,25-D. Knowing that PANDAS kids have major issues with inflammation, this treatment aims at getting intracellular bacteria inside people with autoimmune diseases. They can't seem to get rid of it, which ultimately causes the neurological behaviors and damage to their bodies. It involves long term low dose antibiotics and staying away from vitamin D. I would love to hear from anyone who has checked this out and post comments or knowledge they have with this. IF you google Marshall protocol you'll find a bunch of info. Here is a link that will get you started on some info. http://www.marshallprotocol.com/forum2/4213.html
  13. thanks- my pedi did mention that there have been some studies regarding Vitamin D deficiency and anxiety related disorders. He's willing to do a thyroid test as well.
  14. Dr. Alcy Torres Pediatric Medicine Neurologist, MD 300 Longwood Ave Children's Hospital Boston Boston, MA I had read that he specializes in PANDAS- appts are a few months out to get him. We made an appointment but ended up seeing another neurologist b/c our pedi wanted our son seen sooner. I found the neurologist we eneded up seeing to be some what unhelpful. I think a lot of people in this forum don't get far with the neuro's. not sure if hes into the IVIG or Plasmas exchange. The neuro I ened up taking my son to wanted to put him on Bactrim which isn't the most effective antibiotic for strep I had come to find out- i opted to hold off, i just wasn't confident in her. Anyways, I would start with contacting Dr. Torres if you are looking for a neuro who deals with PANDAS. I couldn't find his number sorry. _______________________________________________________________________________________________________ I'm looking for a pediatric neurologist or psychiatrist in Massachusetts, Connecticut, Rhode Island, or New York (in that order) with specific experience in--and willingness to consider--treating PANDAS with immune modification therapy (IVIG or Plasma Exchange) and long-term antibiotics. Does anyone know of any? Thanks.
  15. My sons pedi agreed to look in to some suggestions that I might have for testing and asked that i put together some of my ideas and drop them off for him to look over. Then we can decide our next step. He mentioned testing his thyroid - i am only a little educated on the thyroid and wonder if that would be helpful. My brother just got diagnosed with a hypothyroidism, and one of my other brothers has pysoriasis. I beleive there is and immune defieciency in my family and wonder what the best test for my son matthew would be. Im not sure what tests i should ask for. I was thinking an allergy test would be an obvious one. But should I be asking for and FANA test? Is there a helpful test that will cover multiple autoimmune diseases? I need to be specific or he will be very general with his ideas. thanks for any help.
  16. Thanks, i'm wondering if any body has used this- and if so what are the side effects? I mentioned this to my pedi the other day and he asked that i put together some information and he would also try to come up with some ideas for treatment/ diagnosis. He suggested testing his thyroid - im not sure if that would show any other signs of an immune disorder/graves? I feel as though something isn't right with his immune system and there is a lot of promising info on LDN.
  17. yes, i would be interested to know what the side effects were? I have heard that if there are food issues, they can have a bad response. This is very interesting considering that all these symptoms in this forum seem to all connect to an uderlying cause of an immune disorder, somewhere along the line. I am suprised more people here have not used it. Chemar, can you elaborate on the side affects? How you came to use it etc?
  18. Hi, I was researching info on naltrexone LDN for autoimmune diseases and came across a website where it seems you can order it for about $45.00. I had thought from posts here that it's only in a prescription form. Here is the website, i was wondering if anyone here has ordered it online?? any comments or concerns on this would be greatly appreciated. http://www.biogenesis-antiaging.com/shopping_cart.php also, if one uses this and it works well on their immune system- is it something that they will have to use the rest of their life?? How long do people with rhemuatoid athritis or crohns disease stay on it?
  19. So does anyone know how long do you have to use this? Does it correct the issue with the immune system over a few months and thats it? Or is it a life long deal?
  20. hi cwmom i live in the boston area and considered taking my son to Dr. Torres... i was wondering what he reccomends as far as treatment for pandas if he doesn't agree with prohibitic antibiotics?? Also when you saw Dr. Fuhlbrigge, did he run any tests to see if your son had any autoimmune dieseases or did he go by symptoms? We have been through a string of doctors and im just trying to get it right and not waste any more time dragging my poor son around (which i worry will give him a complex) for nothing. we have seen a neurologist, a developmental pedi, and a speech patholgist. he is doing neurofeedback now which is covered by my insurance so i'll keep doing with the hopes of any little positve change coming out of it. i give him suppliments like magnesium, inositol and vitamin D. this is in addition to his daily multi. he seems to fit the pandas area, although his personality has a lot to be desired even when his symptoms wane- he just angers easily and doesn't comply at all. all his testing comes back fine- no add, no learing disabilities, just behavior issues and tics, with ocd that wax and wane. the behavior is always there (lucky me). i've been all over the place trying to figure this out- it's such a puzzle! thanks for any help. darla _________________________________________________________________________________________________________
  21. I came across this article when i was researching information regarding dopamine levels and their affects on a number of issues- tourettes, adhd, autism. It basically talks about a drug (AM404) that regulates dopamine. AM404 does not block dopamine receptors. Instead, it blocks the inactivation of the neurotransmitter anandamide. Anandamide is similar to marijuana's active ingredient, THC and belongs to a class of neurotransmitters called endogenous cannabinoids since it is naturally produced by some of the brain's nerve cells. The article states that AM404's selection of nerve cells may mean that treatments may not have the side effects of many current drugs, which aren't as selective about the nerve cells they impact. Now this was written back in 2000- does anyone here have any further information that might be helpful? I was hoping so Below are two articles. The second one sounds like they don't have it ready for people yet. Wondering it there is a natural way to activate Anandamide??? I know exercise does increase it as well as smoking weed b/c of the THC. Also, just to add that Dopamine can be a big part of anxiety, impulsiveness, addiction, lots of different things. When there is not enough OR if there is too much dopamine being produced, this neurotransmitter anandamide, controls the amount. When it isn't working properly, it affects people with add, autism, addiction, tourettes etc. It seems to be a very important link. http://www.sciencedaily.com/releases/2000/...00503183344.htm http://www.dr-bob.org/babble/20021116/msgs/128458.html
  22. update on neurofeedback. My son has done about ten visits so far. I haven't seen evidence of his explosive behavior going away. Two good things i've noticed, are that his obession with the computer dropped way down after about two weeks of neurofeedback. It was a big issue for a while, getting him to transistion from computer to anything. Also he used to say he was nervous and didn't want to go to school EVERY day, that has stopped as well. I feel he does have an anxiety issue more than anything else. So all i care about his chilling him out and hoping that we can teach him skills to deal with frustration and disappointment as well as minding us in general, but im taking it one step at a time. I am continuing with it, if it helps even a little it's worth it to me. It's covered by our insurance of course or else i couldn't afford to do it. He also has a tic that has started back up as well as some ocd symptoms- but it came after a recent strep infections. I started back on his vitamins etc.... (i had let up on them except for mulit vitamin b/c his symptoms improved a lot) the anxiety never goes away though.
  23. Has anyone done this? Take monthly injections of bezathine penicillin?
  24. My son who is eight has been dealing with many issues that fit some where in this forum, we were not sure if it was PANDAS or not. The last time he had strep was xmas vaca which was a horrible experience between his rage, and movements, and ocd/anxiety. We did not put him on prohibitic antibiotics b/c of the side effects and decided to wait for another bout of strep. His symptoms subsided a few weeks after the xmas strep infection, however holding his spit was one of the major things he did. It lasted for a few weeks. He said he was afraid there was hair in there, he would also wash his face as a result. I never really give him anything other than his mulitvitamin, but i tried inositol b/c i read that it helps with ocd. It did. I bought the powder form (it's in the vitamin b family). I would mix it with a sweet drink. He also had to count before taking his vitamin,brush his teeth, give a kiss good night, lots of other ocdish things. It truly helped. He just got over another bout of strep and he has some movements, but not holding spit. He did wash his face out of the blue the other day, hoping it passes, but just in case im giving him a little inositol for a while. Also magnesium as i've read that antibiotics deplete magnesium and it attributes to anxiety and movements. So i figure im helping his sympathetic nervous system out by replenishing his magnesium levels. He was crying the other night at bed time saying he felt like he was going crazy and felt like he needed to push in his eyeball. ??? So i think the ocd is creaping back with anxiety and panic, im just trying to ease his discomfort. i feel so bad for these kids, they feel crazy at times. Hes a moody little bugger too, so im hoping that the magnesium calms him a bit so he doesn't get hyperactive which alwasy leads down a bad road. hope this helps.
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