Confused about Omega's ..how much? which ones?

[minimaxwell]

Hi,

I am fairly new to this nightmare, dx PANS in late Jan. DD17 has been suffering for 11 years. Just finished lVlG 11 days ago. been searching the forum for Omega info for the last 1.5 hours. My head is spinning and figured someone may be able to weigh in. I think I figured out only Omega 3's but not sure how much to give. she is 100 lbs. no tics just OCD/Anxiety/Panic

 

She is taking Folic Acid, Vit. E, Florstar and pearls ,Ester C as per Dr. K

(just added Mega Red Omega 3 Krill) (we also throw in an occasional Cultrelle or some other probiotic)

 

Also figured it might be worth visiting a DAN dr, we live in MA.

 

Lyme was neg. on Quest Western Blot, no bands present.

 

Trying to rule everything out.

 

Thanks in advance, Tiffani

[BoyIowa]

We use Nordic Naturals ProEPA, at recommended dosing. They carry pills, gummies and liquid I believe.

[philamom]

I know there are different opinions regarding the lyme testing. But, for what it's worth my daughter always tests negative for lyme on the Quest western blot. She does test positive with Igenex, and more recently she had a culture done with another lab (Advanced Lab) that showed the spirochettes in her bloodstream. They sent us a picture - so denying it. Unfortunately, the latter test is expensive and not covered by insurance.

Edited March 29, 2012 by philamom

[LNN]

I think I may have confused you on another thread. Omega 3s are generally good for everyone, Pandas kids, healthy kids...the only exception I was mentioning was for kids with pryoluria - a genetic zinc/B6 deficiency where your body pees away the zinc/B6 before your body has a chance to use it. Pyroluriacs also have an Omega 6 deficiency. Some of the binding sites for Omega 6s also bind to Omega 3s. So if you have an Omega 6 deficiency and then supplement with Omega 3s, you can make the Omega 6 deficiency worse. So my kids with pyroluria do better by taking only Omega 6 (in the form of primrose oil) and no Omega 3s. Hope this clears things up a little.

 

One thing I noticed is that your DD is very slim for a 17yo! Does she happen to have any eating issues or anxiety involving food? I ask because you may be interested in a book I just read about nutrition and anorexia. It's by Dr James Greenblatt, an integrative psychiatrist and clinical professor at Tufts. He suggests that being deficient in certain nutrients can precede and possibly cause anorexia, OCD and anxiety issues. Rather than the AN coming first and leading to malnutrition. Very interesting reading and he;s in Waltham. Instead of a DAN, he might be a good resource - http://www.comprehensivepsychiatricresources.com/category.php?category_id=71 and http://www.jamesgreenblattmd.com/

[minimaxwell]

Thanks for the concern over her weight. She has been blessed with at least some good genes. I was also very,very slim when I was young. It changed in my late 20's. Thru the years some of her psych meds gave her loss of appetite and some made her put on weight. She eats very well, if she did not have a fast metabolism she would be a little chunky. She eats a big bowl of ice cream every night. Can you tell I am a little envious. One thing we never had to worry about was bulimeia--her OCD is Vomit Phobia. She recently 2/12 had Acute Pancreatitis (3 days ICU and another 5 in Children's Hospital Boston.) This was after she just started taking Augmentin and Biaxin. We will never know what caused it..virus,infection of rare reaction to the Biaxin. She lost quite a bit of weight. She was not able to eat for several days and then had to conform to a strict low fat diet for 4 weeks. She was miserable and told us she had new respect for people who had to diet!!

 

Just curious- did I post a pic of her? I can't recall.

 

I have 2 friends that have been seeing Dr. Greenblatt for some time and like him very much.(he did miss the PANDAS) They both are now dx as PANDAS from Dr. T. One has classic OCD, the other has OCD/AN/Lyme. I would have to pay out of pocket to see him so I was hoping to find someone else. Do you live in MA too?

[LNN]

I hope your friends went back and told Greenblatt about Pandas. It would be good to have someone with his perspective also increase his understanding of Pandas/Pans. The nutritional aspects of treatment are key in my experience and I wish there were more docs to add their knowledge in this area.

 

No, not in Mass. I'm in CT.

[minimaxwell]

Yes, they both continue to see Dr. Greenblatt. I laso had a friend that was seeing Dr. Geller at Mass General. She left him after 3 rounds of abx and went to Dr. T. When her dd got better (tics started markedly improved) I urged her to go back to Dr. Geller so he could see the great work Dr. t had done. This helps to enlighten these doctors. I am now in the process of trying to get Dr. T to meet with Dr. Geller and Dr. Jenike to share his knowledge with them.

 

Dr. Geller and Dr. Jenike will be having a PANDAS abx trial soon.

 

BTW, can you tell me how you saw my dd's pic? Did I post it? Can't remember..

[PowPow]

I cannot speak for LLM, but you mentioned she was 100lbs and 17. That would be quite slim for an post-pubertal female. I am guessing that is how she knew your daughter was slim!

[minimaxwell]

lol, thanks..losing sleep as I am spending too much time in what I call the "PANDAS vortex"

[LNN]

PowPow's right - it was your written description that caught my eye. I never saw a pic. When I was 100 lbs in HS I was borderline anorexic, even at 5'2". My ribs showed and I was obsessed with my weight. So it raised a flag.

[seekingrelief]

Where could I get more info about this upcoming trial? We are located in Rhode Island and my son was just recently diagnosed with PANDAS by his pediatrician.

 

 

Dr. Geller and Dr. Jenike will be having a PANDAS abx trial soon.

 

 

[minimaxwell]

I would call and get an appt for when Dr Geller comes back from his medical leave.

 

Is your Dr giving you enough abx now?

Where could I get more info about this upcoming trial? We are located in Rhode Island and my son was just recently diagnosed with PANDAS by his pediatrician.

 

 

Dr. Geller and Dr. Jenike will be having a PANDAS abx trial soon.

 

 

[fightingmom]

Seekingrelief, would you mind sharing the name of your pediatrician? We are also in RI and I can not find a doc here that believes in PANDAS or will treat my son.

[nicklemama]

Dr K is DS's PANDAS dr. We use Nordic Naturals Ultra Omega. It has 650mg of EPA. Dr K wants a minimun of 500mg EPA.

[seekingrelief]

Our Pedi is pretty conservative in general with treatments of anything but was very thorough in helping to diagnose what was going on with my son. He put him on a 2 week course of antibiotics that cleared up his tics, motor control, mood swings, impulsivity, and eczema immediately. All has been well for 2 months and then last week he started complaining about his stomach hurting, mild sore throat had a moderate fever for a few days. Now his mood swings, impulsivity, hyperactivity all came back. I am planning to call his pedi on Monday.

 

@fightingmom I will send you a PM with the info