P_Mom Posted January 29, 2008 Report Share Posted January 29, 2008 Now I'm confused, Michele. I thought Coromega was the fish oil, omega 3 stuff that is like an orange pudding type thing that comes in a ketchup type thing?! Link to comment Share on other sites More sharing options...
michele Posted January 30, 2008 Report Share Posted January 30, 2008 That's right it is the pudding stuff. I was confusing Culturelle with Corremega. We have taken both. My head is so confused right now. I have too much on my plate. Four kids (one learning to walk and into everything!) , a dog and a husband who is home long enough to see them off to bed. It is wearing me down. It is like constant chaos in my house. I am planning a big birthday party for 30 on Sat. Plus I am going to the chiropractor three times a week for Fibromyalgia neck and back pain. My son couldn't stand the taste of the Coromega Orange either or the fish oils. Right now he is only taking Monolaurin and no fish oils. I know they are important but I wonder if there is a correlation between his tics and the fish oils. Now that we are off them he is tic free. Have you tried GLA or Borage oil? I know we want to modulate the immune system and not boost it right? Again sorry for the confusion. I think I am sleep deprived. Michele Now I'm confused, Michele. I thought Coromega was the fish oil, omega 3 stuff that is like an orange pudding type thing that comes in a ketchup type thing?! Link to comment Share on other sites More sharing options...
emma1 Posted January 30, 2008 Report Share Posted January 30, 2008 Michele, You do have a full plate! I have four kids, a husband who works late, and a dog -- but I am not running to the chiropractor, so you win. We have been using only PenVK and Inositol (500 mg twice a day) for about two months -- only that. And she has done beautifully. I have the box of Coromega, but haven't used it. I had been using Culturelle, but had forgotten about it over the holidays (funny how your mind goes to other things when the symptoms die down and can't think of anything else when the symptoms flare!) but when I started reading posts about yeast, I did start that up again today. I know antibiotics can cause yeast. Carlson is a brand name of a purified fish oil (omega 3 only - no 6). I had read about it and feel that it is pure. And it didn't have omega 6 which Cheri (Chemar) said boosts the immune system. But. . .a few days into it, I thought I saw more symptoms, and so I stopped. Perhaps I should have kept it up for a longer time, but I didn't. I will say, I had heard about fish oil being great for health and she was taking fish oil when the symptoms first started. I don't know if that means anything because I do believe her symptoms are definitely strep related. Link to comment Share on other sites More sharing options...
michele Posted January 30, 2008 Report Share Posted January 30, 2008 Emma I laughed at your post! We are all busy aren't we! Plus like you mentioned when you are going through these symptoms it is all you can think about. We give 5HTP and GABA for calming and mood stabalization but I have not tried Inositol. How is it working? Has she been exposed to strep lately that you know of? Kelly what is the name of the good omega 3 product you said you were using? I am thinking omega 3 is important to rebuilding the myelin sheath area of the brain. I really would like him to be taking a brain nutrient. What do kids who don't tolerate the fish oils take? Off to the chiropracter! It is horrible dragging the baby along in the freezing cold to all these visits but I have no family in town! Michele Michele, You do have a full plate! I have four kids, a husband who works late, and a dog -- but I am not running to the chiropractor, so you win. We have been using only PenVK and Inositol (500 mg twice a day) for about two months -- only that. And she has done beautifully. I have the box of Coromega, but haven't used it. I had been using Culturelle, but had forgotten about it over the holidays (funny how your mind goes to other things when the symptoms die down and can't think of anything else when the symptoms flare!) but when I started reading posts about yeast, I did start that up again today. I know antibiotics can cause yeast. Carlson is a brand name of a purified fish oil (omega 3 only - no 6). I had read about it and feel that it is pure. And it didn't have omega 6 which Cheri (Chemar) said boosts the immune system. But. . .a few days into it, I thought I saw more symptoms, and so I stopped. Perhaps I should have kept it up for a longer time, but I didn't. I will say, I had heard about fish oil being great for health and she was taking fish oil when the symptoms first started. I don't know if that means anything because I do believe her symptoms are definitely strep related. Link to comment Share on other sites More sharing options...
MarkW Posted January 31, 2008 Author Report Share Posted January 31, 2008 Emma, It is indeed difficult to find information on later teen/PANDAS. I have found articles at Science Direct and The American Journal of Psychiatry that speaks to later teens/adults meeting every criteria for PANDAS except for age. I did want to ask about your daughters onset, was it an almost overnight situation with tics/OCD as so many describe? Our situation seemed to evolve more slowly where moods/memory became noticeable, then anxiety and finally followed by OCD and the rest of the described PANDAS symptoms (age regression, bedtime rituals etc). Now many of the symptoms have subsided but anxiety and hyperactivity along with mood changes are in a constant state of flux. I must admit I am somewhat confused about (not using Omega oil) so as NOT to boost the immune system. Our psychiatrist has been very proactive with vitamins, oils and amino acids. We are now 2 years into this and don't see an end in sight. Thanks Link to comment Share on other sites More sharing options...
P_Mom Posted January 31, 2008 Report Share Posted January 31, 2008 Mark, From all my research, and from all I have been also told by Doctors, Omega 3's are VERY important with PANDAS. Omega 3's are anti-inflammatory and help reduce inflamation on the brain from PANDAS, plus, they are so essential in helping the brain repair and protect itself. Omega 6 and 9's (not that they are bad, just don't supplement) are not recommended for PANDAS, they do not have the same benefits for PANDAS as the 3's do. Also, Dr. Murphy recommended the that the Omega 3 ratio be higher in EPA's than DHA's. I hope this helps. Kelly Link to comment Share on other sites More sharing options...
michele Posted January 31, 2008 Report Share Posted January 31, 2008 Kelly, What is the name of the Omega 3 product you are using and how much do you give per day? Have you ever seen an increase in tics when giving it? If omega 3's aren't tolerated what is a good substitute? Michele Mark, From all my research, and from all I have been also told by Doctors, Omega 3's are VERY important with PANDAS. Omega 3's are anti-inflammatory and help reduce inflamation on the brain from PANDAS, plus, they are so essential in helping the brain repair and protect itself. Omega 6 and 9's (not that they are bad, just don't supplement) are not recommended for PANDAS, they do not have the same benefits for PANDAS as the 3's do. Also, Dr. Murphy recommended the that the Omega 3 ratio be higher in EPA's than DHA's. I hope this helps. Kelly Link to comment Share on other sites More sharing options...
MarkW Posted January 31, 2008 Author Report Share Posted January 31, 2008 Kelly, More recently although we've been doing Super Omega 3, we've also been using Evening Primrose Oil (which is 6). We did this because of the recommendation from Dr. Mary Reed Gates at www.ocd-free.org. She felt we needed to build on the thin myelin sheathing and highly recommends Evening Primrose to accomplish this. So if I'm hearing correct stick with the 3's for PANDAS. I would hope that 3 also helps boost/rebuild the thin myelin sheathing also. Mark Link to comment Share on other sites More sharing options...
emma1 Posted February 1, 2008 Report Share Posted February 1, 2008 I just wanted to clarify re: Omega 3 and 6. In a discussion "PANDAS vs. TS -- Supplements" Chemar wrote the following: basically, the short version of a complex biochemical mechanism is that omega 6 stimulates the inflammatory response via the prostaglandins...great in people who have a balanced inflamation system but not good for those with autoimune illnesses where inflammation is usually a primary factor. Omega 3 dampens the inflammatory response so good for autoimmune people. Immuno modulating substances, of which zithromax appears to be one, are those that return balance to the immune system, which is hyperactive in those with autoimmunity. So one is neither boosting nor damping it with these but rather keeping it at a modulated level. Anti-inflammatory drugs (eg steroids) tend to supress or damp the immune system. Modulators keep it at an even keel. Link to comment Share on other sites More sharing options...
powerofprayer Posted February 1, 2008 Report Share Posted February 1, 2008 Kelly, What is the name of the Omega 3 product you are using and how much do you give per day? Have you ever seen an increase in tics when giving it? If omega 3's aren't tolerated what is a good substitute? Michele I've read on here a lot about substituting flax oil as a source of omega 3's if the child doesn't seem to tolerate fish oil. fish oil is the best source of omega 3 but flax oil is a second choice. Link to comment Share on other sites More sharing options...
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