momoffive

the psychiatrist agreed with this reasoning and said for PANDAS - higher DHA. looks like doctors disagree on this, go figure.....

I think I leaned a lesson. they come in 250 mg, so I will give them 2 x per week - spread a part. I wish I did not listen to him. ugh....... So, your tablets have red dye? I've never seen that w/ zith tablets. they are pink and the pharmacist said they use red dye [not even food grade - real garbage]. that is all our cvs has, so maybe I should call around. I need the white.

I think I leaned a lesson. they come in 250 mg, so I will give them 2 x per week - spread a part. I wish I did not listen to him. ugh.......

Hi. What type of OLE do you use? how much can you give?

Hi. My ped wants my son to take 500 mg 1x per week prophylacticly. I know that is likely off, but he says that's the "new recommendation for PANDAS." Anyway, I am doing it for now as it is all I have, but 1. 500 mg really upset my son's stomach [he is about 45 pounds] and 2. that pink color caused big reactions. Any ideas of how I can ease the pain and reactions? Or is it just part of life? Thanks!!

Hi. My 7 years consistently is low in D in spite of his 4,000 unit per day supplement and lots of sunshine. I am curious as to where it is all going?? is the cream more absorbent than the liquid?

thank you. do you use the adult or "kidz" version from their website?

you may be right! my head was spinning with information and, of course, I had no pen. thanks!!!

Hi. the psychiatrist recommended a high DHA low EPA ratio for mood stability for my 7 year old w/ PANDAS. After reading lots AND LOTS of labels, I am having a hard time finding this. Any ideas? Thanks

Hi. has anyone tried OLE for their kids symptoms? if so, did you use it with the abx or instead? thanks!!

I did not know DR. E did plasmapharesis! That is good information to have- thank you for sharing that! Another parent (lismom) dealt with strep in the gut - with high bacteria count in the stool - and had issues with sugar, I recall. You may want to put her name in the search box and look for posts. I don't think she ever did IVIG or plasmapharesis, and I think it has been a long haul for them, but I believe they have seen improvement. Also, is Dr. E doing plasmapharesis (basically, cleaning out the blood) or Plasma exchange (cleaning out the blood and adding donor antibodies). There may be different criteria for insurance coverage for the two different procedures. I know some other parents have been dealing with insurance reimbursement for PEX - perhaps they will chime in. You are doing a great job finding answers - I am sure it has taken quite a bit of detective work to get to the point you are at! I wish you all the best! hmmm. Dr E used the term plasmapharesis. I'll need to ask if donor antibodies are added or it is just a "cleaning". I met some of the staff at the apharesis unit and they said they had a few other pandas cases.

Hello - and welcome! The families on this site are a world of knowledge! I can share with you some of what I've learned in the past few months that may be of help to you. You mentioned Dr. Elia is seeing your child and recommending PEX. Is Dr. Elia planning to do the PEX or has she referred you to another doc? Dr. L is the only doc I know who is currently using PEX, though I may be mistaken on that one. Also, when she is talking about PEX, I am assuming she means plasmapharesis (which cleans the antibodies out of the blood) along with IVIG (which places new, donor antibodies into the blood). Prior to starting PEX (or any treatment), I think it is important to have very good understanding of your child's immune system and any current or past infections. Has your son had bloodwork done? Most PANDAS docs seem to recommend an immune status panel with 14 serotypes of S. Pneumoniae, ASO, DNASE B, mycoplasma, Lyme with western blot, and several are now also looking at C3D levels. All of these are important to take at baseline, as they can help the doctor to understand what your child's underlying problems are and can help to justify PEX or IVIG so insurance is more likely to cover it. Once you have a better understanding of what the possible infection is, then it may be easier to find the best antibiotic for the job. Also, it is my understanding that it is important to remove any underlying infections before doing PEX or IVIG as these treatments may not "reset" the immune system if the immune system is still weighed down by fighting an ongoing infection. I understand that inflammation is a big issue - it is for us all. I agree with others who have recommended ibuprofen. There are threads on this forum for anti inflammatory diets. Also, regarding yeast - there are threads about yeast as well. You may want to ask for some diflucan with your antibiotic, and be sure to use probiotics (a few hours apart from the antibiotic). The red dye in the azithromycin has been problematic for some. Perhaps someone will chime in with their solution! Best wishes on your journey - please keep asking and reading! yes, Dr E does plasmapharesis. the only continuous infection I am aware of is strep, but it has not been in his throat. he also has very high bacteria count in his stool [?] could that be strep? I will follow-up re testing and trying other meds. thanks for the info!! I wanted to add if he has GI issues and the strep was in his gut (is that right?), it is probably a good idea to look into the Specific Carbohydrate diet. I mention this because you said sugar makes him worse. Sweets and other stuff lower your PH, and microbes thrive in an acidic environment. that is very interesting because I give him something called alkalime [like a baking soda/lemon mixture] and he feels better. I will look at that diet ASAP! I never knew I needed to be a medical professional to be a mom:)

Hello - and welcome! The families on this site are a world of knowledge! I can share with you some of what I've learned in the past few months that may be of help to you. You mentioned Dr. Elia is seeing your child and recommending PEX. Is Dr. Elia planning to do the PEX or has she referred you to another doc? Dr. L is the only doc I know who is currently using PEX, though I may be mistaken on that one. Also, when she is talking about PEX, I am assuming she means plasmapharesis (which cleans the antibodies out of the blood) along with IVIG (which places new, donor antibodies into the blood). Prior to starting PEX (or any treatment), I think it is important to have very good understanding of your child's immune system and any current or past infections. Has your son had bloodwork done? Most PANDAS docs seem to recommend an immune status panel with 14 serotypes of S. Pneumoniae, ASO, DNASE B, mycoplasma, Lyme with western blot, and several are now also looking at C3D levels. All of these are important to take at baseline, as they can help the doctor to understand what your child's underlying problems are and can help to justify PEX or IVIG so insurance is more likely to cover it. Once you have a better understanding of what the possible infection is, then it may be easier to find the best antibiotic for the job. Also, it is my understanding that it is important to remove any underlying infections before doing PEX or IVIG as these treatments may not "reset" the immune system if the immune system is still weighed down by fighting an ongoing infection. I understand that inflammation is a big issue - it is for us all. I agree with others who have recommended ibuprofen. There are threads on this forum for anti inflammatory diets. Also, regarding yeast - there are threads about yeast as well. You may want to ask for some diflucan with your antibiotic, and be sure to use probiotics (a few hours apart from the antibiotic). The red dye in the azithromycin has been problematic for some. Perhaps someone will chime in with their solution! Best wishes on your journey - please keep asking and reading! yes, Dr E does plasmapharesis. the only continuous infection I am aware of is strep, but it has not been in his throat. he also has very high bacteria count in his stool [?] could that be strep? I will follow-up re testing and trying other meds. thanks for the info!!

Hi there, So sorry about your son! At least now you have a diagnosis. If you've been reading the forum for a while, you probably run into one of my posts, and I am a broken record with this, but here it goes AGAIN GET THE WHOLE FAMILY CHECKED FOR STREP. RAPID + CULTURE, AND IF YOU CAN CONVINCE YOUR DOCTORS, GET TITERS DONE TOO. I heard this a year ago, and for some reason did not act on it right away (except I did always get my kids checked whenever my 12yo was showing an increase of symptoms). It turns out both my husband and I have high titers, and I believe this is why my kids kept getting strep (like 5 times since Oct. 09). It may turn out you are all clear, but it is so hard with large families! I have 8 kids, and believe me, it's not fun to have to take them all in. At the beginning I got that "oh you poor crazy thing" kind of look, but after my kids kept testing positive without symptoms, my pediatrician agrees we definitely have a strep problem going. I would maybe try stronger antibiotics before proceeding with PEX. About getting him to sit still, I think the doctor can probably judge that. At Georgetown you have to go in the day before so they can make sure they child will be able to make it through. About the diet thing, if you could the GAPS diet (www.gapsdiet.com) or the Specific Carbohydrate Diet (www.breakingtheviciouscycle.info) would be worth checking out. Isabel thanks. wow - 8 kids. I have 5 kids I need to get them checked. My doc agreed to strep titers but not cultures. Do I need to get my newborn and 2 year old checked too, or just the bigger kids?

hi. I just started ibuprofen today. can you give azithro daily at 200 mg? I'd rather that. we tried 2x per week at 200 mg and it was a nightmare. it did nothing and gave him red dye reactions to boot. I suspect he has yeast issues as well. he sees Dr Elia. thus far she is very responsive. is there anything that one can do to calm the child in the mist of an attack of, say, rage?

Hi. My 7 year old was recently diagnosed w/ PANDAS. he has had emotional instability and anxiety for years and we have tried everything but could not figure out the trigger. finally we seem to have an answer, but not a clear one. his symptoms have been getting much worse in spite of the anx. he is recently experiencing a few very good days, thankfully. But I am on edge as to when it may go down hill. his symptoms are serious, ocd tics, hallucinations, voices telling him to hurt . . . . his md recommended PEX but I am fearful [how do I get him to sit? how to I get insurance to pay? will it help???...]. he is on azithro, just finished 2nd 10 day course and will take 1 time per week at 500 mg. he is also trying singluair. inflammation seems to be a big issue for him. any sugar makes him much worse. any help, ideas would be great. - especially related to diet and supplements. I am been reading some posts and everyone seems SO supportive. it will be a blessing to share this journey w/ others who understand as SO many do not.

While she is not a pediatrician, Dr Elia at CHOP is wonderful.