Discussion: Antibiotic or Anti-Inflammatory Treatment for PANDAS

[EAMom]

Here's some good info. on ASO http://www.latitudes.org/forums/index.php?showtopic=3756&pid=29305&start=&st=#entry29305

 

Basically, ASO (blood test) is one of the commonly measured "strep titers" that help docs tell if someone has had a strep infection in the past. However, it does NOT measure the same antibodies which cause PANDAS. Also, not everybody gets an elevated ASO (even if they have had strep) or they may get an elevated ASO, but it may drop quickly, so it might be low if you measure it at the wrong time.

 

Where doing an ASO (and anti-dnase b, another strep titer) can be helpful is when you don't have positive cultures, and are looking for some "evidence" of a past (or current) strep infection.

 

If you already have a history of positive cultures (as in your case), doing the titers doesn't really give you much more info.

 

The ASO test has also been a big source of misinformation/confusion, becaue many docs believe that a low ASO or anti-dnase b rules out PANDAS eg. that ASO is some kind of a "test" for PANDAS. Not true...and lots of PANDAS kids have low ASO (including mine).

[P_Mom]

Just curious...this may be way off track, but, can IVIG give you antibodies to Lyme and its co-infections??? Then, after IVIG, a child could test positive for these infections, without really having them, because the IVIG gave them the antibodies? And, Lyme testing checks for antibodies to the infections? Anyone follow me??

[philamom]

Just curious...this may be way off track, but, can IVIG give you antibodies to Lyme and its co-infections??? Then, after IVIG, a child could test positive for these infections, without really having them, because the IVIG gave them the antibodies? And, Lyme testing checks for antibodies to the infections? Anyone follow me??

 

GREAT question! I also was wondering this as well!

Melinda

[philamom]

Also, what's the screening process of Lyme for the IVIG? Is it the regular western blot that is usually negative anyhow? Scary!

[KeithandElizabeth]

I keep wondering the same thing! I called IGENEX and they said that I should not worry about this as long as we were at least 4 weeks post IVIG for my son.

 

My daughter had a positive IGENEX test come back 2 days prior to her scheduled IVIG so her test was done without a history of any IVIG's. I ended up canceling the IVIG because Dr. K said to wait until I treat the lyme first. She is doing fantastic with the lyme treatment and now I am questioning whether or not to even do the IVIG>

 

elizabeth

[philamom]

I keep wondering the same thing! I called IGENEX and they said that I should not worry about this as long as we were at least 4 weeks post IVIG for my son.

 

My daughter had a positive IGENEX test come back 2 days prior to her scheduled IVIG so her test was done without a history of any IVIG's. I ended up canceling the IVIG because Dr. K said to wait until I treat the lyme first. She is doing fantastic with the lyme treatment and now I am questioning whether or not to even do the IVIG>

 

elizabeth

 

Great news about your daughter!

[sf_mom]

This question is on the list for tomorrows appointment!!!

[P_Mom]

Thanks, SF Mom.....keep us updated.

[nevergiveup]

I have heard testing for lyme after ivig, will lead to non conclusive results.Same with testing for co infections and cunningham test.

[philamom]

I have heard testing for lyme after ivig, will lead to non conclusive results.Same with testing for co infections and cunningham test.

 

I believe when I called Igenex they said 4 weeks post ivig would be fine. We waited 10 weeks post ivig and received a positive IgM & negative IgG Western Blot.

[Stephanie2]

I wish I had time at the moment to read all the responses to this and to thoroughly respond myself. But I will say this. I believe that my 5 year old responds so well to zithromax b/c it si so anti-inflammatory for him (also modulates the immune system). when zith fails and we suspect strep, i switch him to augmentin. going to experiment with only prophylactic abx soon. Also our DAN practitioner recommended that we bump up the fish oil for the anti-inflammatory effect as well, something about it being a PPAR agonist/antagonist? I can't remember, but he said it would work similar to Actos. We also use Enhansa, a curcumin supplement for anti-inflammatory properties.

 

I also want to mention that both of my boys have pandas and they have responded tremendously to spironolactone and low-dose naltrexone. these are safe meds which a re used widely withing the autism community for pandas/autism. they each have an immune-modulating effect, as well as anti-inflammatory properties. also, when all else fails we start with a "motrin protocol" (full-dose motrin every 3-4 hours, while awake, for 3 days at first sign of pandas symptoms). Lastly, steroid taper has helped my 2 year old, and one infusion of IVIG (1 g/kg) helped my 5 year old.

 

You are definitley on to something, and yes I agree there is something more to it than the fact that abx just treat strep. there are other infections that trigger pandas symptoms, yet the abx seem to help with that too.

 

Hello,

 

My name is Dave Hiergesell and I have recently joined this group in order to learn what I can about PANDAS treatment to help my daughter Blake. I have received a lot of great advice about this and I am implementing many of the ideas I have gotten. Thank you very much.

 

I'd like to bring a topic up for discussion as a kind of "null hypothesis" which could actually be tested at some point in the future, but for now it may be worthy of discussion. In this particular case, the null hypothesis is that there is no relationship between improvement of PANDAS symptoms and the anti-inflammatory effects of the antibiotic being administered.

 

As an "experimental hypothesis" I'd like to propose the following:

 

It is my suspicion (nearing an belief) that the primary clinical improvement in symptoms of PANDAS children who are taking antibiotics (prophylactic or otherwise) is due to the anti-inflammatory characteristics of certain antibiotics. The improvement is due to the reduction in inflammation REGARDLESS if there is any infectious agent there or not.

 

I realize that I've waded deep into the swamp of the controversy over antibiotic treatment of PANDAS and am on an island now. I believe that only through intense discussion and resultant research will we ever be able to get real answers on this disorder and agree on the safest treatment protocol possible.

 

I'm going to play devil's advocate here on antibiotics.

 

Personally, if I were Sammy's mom (or any other parent with a bad PANDAS case on their hands) I'd fire doctors until I found one willing to treat with prophylactic antibiotics. You give Sammy 2000 mg per day of Augmentin XR and his symptoms subside, then I don't care about the bad things other doctors say will happen by keeping him on this regime. He is a physical danger to himself at this point. Side effects of not giving him this treatment outweigh what the doctors are worried about. Its a moral choice at this point and the doctors don't have to live with Sammy.

 

Here's a different twist on this: Let's suppose for a moment that Sammy's PANDAS restricted diet of not eating for days on end, or eating only foods such as watermelon etc. are causing INTENSE inflammation in his body way above and beyond PANDAS. Let's say his body starts basically consuming itself due to malnutrition which is MAJOR inflammation.

 

My daughter Blake who has PANDAS is malnourished due to the fact that spices and other flavors most people take for granted in their diets are way too strong for her in a sensory capacity. She only drinks water because she reports that other drinks are too strong for her. She's practically a vegetarian now. Prior to PANDAS she ate and drank everything we gave her.

 

So, the malnourished PANDAS child is now going off the scale in terms of inflammation due to self-imposed DIETARY anomalies as a result of PANDAS. This would be like "turbo charging" PANDAS with inflammation off the scale. The more restricted the diet, the worse PANDAS becomes.

 

Now, enter the doctor. Let's say the doctor gives the malnourished "turbo charged" PANDAS child a blast of steroids. Symptoms resolve almost immediately. Inflammation zapped, symptoms resolve. Now the clock is ticking though. The steroids start doing their work on the immune system and the symptoms start to accumulate. Zap, the child is taken off steroids. PANDAS returns.

 

Enter antibiotics.

 

Augmentin XR has been shown in studies to have a positive effect on Alzheimer's sufferers. Are we to assume that the Augmentin is killing some sort of infection which is leading to the improvement in these patients? No, it's actually the anti-inflammatory characteristics of Augmentin that are helping these patients.

 

Well, what if the same mechanism where Augmentin XR helps Alzheimer's patients is the primary mechanism that also helps PANDAS sufferers? What if the infection gets zapped quickly and the inflammation causing antibodies are still reeking havoc on the PANDAS brain is being kept in check by the Augmentin XR?

 

Doesn't this scenario suggest other possible safer treatment alternatives? Ones that are not as controversial with "conventional" doctors?

 

There are numerous antibiotics that have anti-inflammatory effects such as Emycin and Tetracyclines. These are basically older antibiotics which don't come up in conversations about causing drug resistance. Any resistance these drugs have caused over the years has already taken place. The damage is done.

 

BUT, what about using these older antibiotics not primarily to kill infection, but in sub-antibiotic doses in an anti-inflammatory "cocktail" with an anti-inflammatory diet to keep PANDAS sufferers on a "maintenance program" with periodic checks for strep which would lead to blasts of powerful antibiotics to kill infections. What if we don't really NEED to have PANDAS kids on prophylactic antibiotics after all?

 

Rheumatologists currently use this type of treatment for arthritis and other autoimmune disorders. Since PANDAS is likely a rheumatic type of disorder (if you believe what the latest theories are proposing) then it makes sense to treat it in a similar fashion to other autoimmune disorders.

 

Personally, I'm not going to take that chance now that I have an opportunity to work with Dr. Latimer in Maryland in late September. If she wants to put Blake on prophylactic antibiotics then I am going to happily have the prescriptions filled at CVS. However, I am going forward with pushing for this other treatment regime over the long-term since that is what matters the most anyway.

 

Blake told me this morning that the Concerta she is taking daily at 27mg makes it harder for her to eat since it makes her not hungry. She tells me that her close friend who takes Concerta tells her that she is suffering from depression symptoms related to Concerta. Blake says that she feels depressed all the time and that she is unattractive. She's a 70lb 12 year old with glasses and few friends.

 

I am putting my money where my mouth is on anti-inflammation. Today she started on Eskimo dose IFOS pharmaceutical Omega 3 fish oil which is a very powerful anti-inflammatory that crosses the blood brain barrier. She told me anecdotally earlier that her depression symptoms have lifted. I gave her 7.5 grams or 10 capsules cut open and put in a strawberry/banana/milk shake with protein powder.

 

That's a lot of fish oil, but it is not dangerous at all. There is a blood thinning effect, but nowhere near as problematic as steroids or aspirin for that matter. She is now going on a Zone Diet balanced with 40% Protein / 30% healthy fats / 30% healthy carbs or as near as we can get it. We have to give her the protein powder in Egg White powder since she doesn't eat much meat, but baby steps.

 

I would be interested in some feedback no matter how dogmatic it is.

 

We PANDAS parents desperately need another track we can take with "mainstream" doctors. What if Sammy (from Saving Sammy) was benefiting not as much from the Augmentin XR killing his strep, but from Augmentin XR's anti-inflammatory effects? Can we reproduce the same results with other safer treatments?

 

The null hypothesis is that it's really the antibiotics which are keeping the strep infection at bay and not allowing antibodies to be produced in the first place. That's the primary "battle line" in the battle. The experimental hypothesis I propose is that it may be the inflammatory response that is the primary "battle line" in the PANDAS battle. If the experimental hypothesis holds any water, we can likely develop safer treatment protocols for PANDAS kids, ones that may be more acceptable to pediatricians worldwide.

 

It's a HUGE question. There's a lot of needless suffering hanging in the balance.

 

Dave H.

[Stephanie2]

OK, despite my best effort I have been sucked into this thread!!!! LOL!

 

Couple more points: 1. I LOVE Oil of Oregano for strep, yeast, viruses, warts, you name it. powerful stuff.

 

2. I also want to mention that my husband and I have found that sleep is a MAJOR immune-modulator/anit-inflammatory. I put my boys to bed at 6:00 (2 year old) and 6:30/7:00 (5 year old). We have come to realize after learning the hard way, that pandas-type symptoms creep in the next day if we don't stick to this strict bedtime routine. I recently kept my son up until 11:00 pm and I am not exagerating that he was a complete nightmare/train wreck the next day. I know all kids have trouble with sleep deprivation, but it is specifically pandas behaviors that increase (tics, adhd, ocd). we find sleep to be so powerful that we will arrange any and all plans around their sleep schedule. We don't even do sports which will get in the way (which is pretty much all sports).

 

3. I really believe that inflammation can be decreased with diet. Like they say, shop around the outside of the grocery store. decrease red meat, increase fish/lean chicken, etc. tons of fruits/veggies, no packaged foods with trans fats, bad oils, etc. I am having a hard time with this one, but slowly working in the right direction. This can be a vicious cycle b/c I find it is impossible to get my 2 yo to eat fruits/veggies while in exacerbation b/c of the texture. I am planning to purchase a juicer and I will literally syringe it into his mouth next time that happens b/c I believe so strongly in this...

 

I am not done reading this thread, I'm sure I will be back with more to say!

Hi Dave!! Glad you joined the forums. Remember me from the FaceBook group??

 

Few things...

First & foremost, I'm a complete idiot. I got my Omegas mixed up & have been searching for lone Omega-6 for weeks now... The inflammatory one.

 

Secondly, this is the first time I've seen Alzheimer's treatments mentioned on the forum. My neurologist once put me on Aricept, another Alzheimer's medication. I can't recall my dose or even really what it did (too long ago & on too many medications at once to attribute any positive OR negative results to any specific pill). I know that it's an acetylcholinesterase inhibitor (thanks, Wikipedia), but beyond that I don't really understand what it does. Just thought it odd that two Alzheimer's treatments had been used with P.A.N.D.A.S. patients.

 

What is she taking the Concerta for? I've been prescribed multiple ADHD medications, but the only one that I can remember the name of is Tenex... As with the Aricept it's really hard to say what side effect came from which pharmaceutical during that period for me, but I do remember it not boding well with me. I didn't have food issues back then but I remember my anxiety & depression being pushed over the edge whenever I was on those types of medicines. Maybe you could try a smaller dose or an alternative pill that inhibits her appetite less? just a suggestion.

 

Besides that, I've been vegetarian for six years & gluten-free for almost two months. If you'd like me to talk to you or your daughter about food issues (I have recently developed choking fears, as well) I would be more than willing to.

 

Emerson,

 

Glad to hear you are on this forum too. I have been worried about you actually as you are looking for a new doctor. Omega 6 oils are "poisonous" from an inflammatory standpoint and will really affect your PANDAS in a bad way. Corn oil, canola oil, and all vegetable oils EXCEPT for Olive Oil cause massive inflammation. Cut all of them out of your diet immediately. (Including Doritos, Cheese Nips with Omega 6 trans fats mixed with pure carbohydrates - death food for inflammation) Use only Olive Oil and Butter. I personally buy Omapure IFOS certified Fish Oil at $20 per bottle of 120 capsules. You buy them in lots of 10 to get this price.

 

For your condition, I would take 15 capsules of Omapure per day which is an Eskimo dose. This will dilute the Aracidontic Acid (AA) which is causing the inflammation in your brain. The EPA in pure Omega 3 IFOS fish oil can only dilute AA which will result in decreasing inflammation. If you get on this fish oil and go off of it for two weeks remember that you will return to your previous inflammation state. If you quit, you go back in other words.

 

There are other benefits to the fish oil, but you'll know them soon enough. Please stay away from useless flaxseed oil, Omega 3,6,9 supplements and other brands of Omega 3 which are not 2/1 ratio EPA/DHA and IFOS certified for pharmaceutical grade. The best you can get is OmegaRX by Dr. Barry Sears. Get the liquid oil if you can afford it. Sears' products are the state of the art.

 

I am not sure why Blake is on Concerta. Her pediatrician keeps her on it because she was misdiagnosed with ADHD. She will fail out of school if she is not treated for this. When she is treated she, like Sammy, gets perfect grades. I'm not sure how I feel about this... good grades... malnutrition on the other hand. It's hard to worry about school with PANDAS, but I'm not the custodial parent here. I am winning a slow, but difficult battle with her mother for recognition of PANDAS cutting edge treatment. Blake's mom thinks I'm in this because I'm overreacting. She sluffs off the strangest behavior as normal when it is PANDAS. It's been a real problem.

[Stephanie2]

Have to disagree with you here. My son, and many other children, when tested, have shown to be low in Vit. D. This can be quite dangerous and create a situation where the child cannot fight off dangerous infections. Our DAN practitioners have done wonders in my kids with immune-boosting vitamins/supplements. No more asthma, no more severe allergies, hives, chronic ear and sinus infections. I'm not saying that you should give your kids "echinacea" which can overstimulate the immune system, but things that support the immune system are so vital.

 

Great topic--Thank you.

 

My husband and I were just discussing similar issues, over dinner/dishes etc.

 

We lean (today) towards the anti-inflammatory perspective--but as discussed tonight, DH brings up the fact that we are giving the girls Omega 3's, mega doses of vit.C, vit.D in an effort to build/strengthen the immune system...

 

DH asks: WHY if Ps is an auto-immune reaction, if steroids (which worked dramatically for our kids) are in essence suppressing the immune system...Why would we want to build it up?

 

Any thoughts?...

realizing that Omega 3's are anti-inflammatory, but then building the immune system should be right, correct?

AH!

 

I'm with you Tmom, but not sure where Omega 3's are involved in building the immune system. Even if they were, how do we know it's a good idea to mess with the immune system? With H1N1, anthrax letters, bird flu etc., do we want to mess around with things that hurt the immune system?

 

Omega 3's in HIGH DOSE that are extremely pure nearly as strong an anti-inflammatory agent as prednisone. All of this without putting a damper on the immune system. Prednisone is like a thermonuclear bomb. It will definitely kill the bad guys, but it also kills the good guys. And... the effects are bad long-term.

 

I'm not sure mega dose of Vitamins such as C and D are advisable in children. You can actually cause scurvy after taking yourself off of mass doses of C. I'm not sure what the toxicity of Vitamin D is, but I'd be careful about this.

 

My take on this is: don't worry about the immune system. Leave it alone. Don't mess with it unless absolutely necessary. Omega 3's will not affect the immune system one way or another. Please read Omega RX by Dr. Barry Sears and the Anti-Inflammation Zone. Available used from Amazon for less than ten dollars.

[Stephanie2]

Ok, last point then I need to get something accomplished while ds2 is taking a nap. Yeast and bacteria are created by the high dose abx, so probiotics are VITAL to managing these infections. You won't necessarily "see" yeast or bacteria, but believe me they are there if you are using high dose abx. I have become good at spotting the signs that these infections are creeping in and I call the DAN who puts them on diflucan for yeast and vancomycin for bacteria (my boys tested pos. for klebsiella and clostridia). No point in treating one infection and creating another. We use 500 billion cfu's of probiotics each day per child. 250 am and 250 pm. 1.5 hours away from abx.

 

Have to disagree with you here. My son, and many other children, when tested, have shown to be low in Vit. D. This can be quite dangerous and create a situation where the child cannot fight off dangerous infections. Our DAN practitioners have done wonders in my kids with immune-boosting vitamins/supplements. No more asthma, no more severe allergies, hives, chronic ear and sinus infections. I'm not saying that you should give your kids "echinacea" which can overstimulate the immune system, but things that support the immune system are so vital.

 

Great topic--Thank you.

 

My husband and I were just discussing similar issues, over dinner/dishes etc.

 

We lean (today) towards the anti-inflammatory perspective--but as discussed tonight, DH brings up the fact that we are giving the girls Omega 3's, mega doses of vit.C, vit.D in an effort to build/strengthen the immune system...

 

DH asks: WHY if Ps is an auto-immune reaction, if steroids (which worked dramatically for our kids) are in essence suppressing the immune system...Why would we want to build it up?

 

Any thoughts?...

realizing that Omega 3's are anti-inflammatory, but then building the immune system should be right, correct?

AH!

 

I'm with you Tmom, but not sure where Omega 3's are involved in building the immune system. Even if they were, how do we know it's a good idea to mess with the immune system? With H1N1, anthrax letters, bird flu etc., do we want to mess around with things that hurt the immune system?

 

Omega 3's in HIGH DOSE that are extremely pure nearly as strong an anti-inflammatory agent as prednisone. All of this without putting a damper on the immune system. Prednisone is like a thermonuclear bomb. It will definitely kill the bad guys, but it also kills the good guys. And... the effects are bad long-term.

 

I'm not sure mega dose of Vitamins such as C and D are advisable in children. You can actually cause scurvy after taking yourself off of mass doses of C. I'm not sure what the toxicity of Vitamin D is, but I'd be careful about this.

 

My take on this is: don't worry about the immune system. Leave it alone. Don't mess with it unless absolutely necessary. Omega 3's will not affect the immune system one way or another. Please read Omega RX by Dr. Barry Sears and the Anti-Inflammation Zone. Available used from Amazon for less than ten dollars.

[Hierge]

Thanks Emerson, sorry for the delay in getting back to you. I have been very busy this summer!

 

Not sure if I'm helping here with your vegetarian diet being in my mind a major problem for you which could possibly be causing your PANDAS to be much worse than it should be. My daughter Blake used to eat meat and it is slowly disappearing from her diet. This worries me.

 

Human beings aren't vegetarians. Your teeth are a carnivore's teeth which means we are all carnivores. I understand that meat can be gross when you think about it, but unless it is definitely causing you real problems I think that adding fish and some chicken to your diet is critical to your future health.

 

If you really want to know where you stand on inflammation, find out more about a test called AA/EPA from Dr. Barry Sears of "The Anti-Inflammatory Zone" book. I am rereading that book right now. Sears is good friends with Dr. Amen who is a top expert on ADD. He says that the elimination of Omega 3's from fish oils in the diet after three generations is what is causing the current epidemic of ADD/ADHD.

 

Sears says that ADD children are similar to Altzheimers patients in that they have a fish oil "supermetabolism" which requires that they be treated for silent inflammation with really huge mega doses of fish oil. He has to give these children 15 GRAMS per day in order to bring their AA/EPA level down to a level of 2.

 

I suspect that your AA/EPA ratio is astronomical... something on the order of 50 maybe as high as 100 which is the highest Sears has witnessed. If this is the case then you have massive silent inflammation that needs to be addressed. The only way he indicates you can do this is through an anti-inflammatory diet, megadose of fish oil in capsules, and exercise.

 

Blake is begging to be taken off of Concerta. I am in a major disagreement with her mother on this. I hope Dr. Latimer will help settle this in September.

 

Take care Emerson.

 

Hi Dave!! Glad you joined the forums. Remember me from the FaceBook group??

 

Few things...

First & foremost, I'm a complete idiot. I got my Omegas mixed up & have been searching for lone Omega-6 for weeks now... The inflammatory one.

 

Secondly, this is the first time I've seen Alzheimer's treatments mentioned on the forum. My neurologist once put me on Aricept, another Alzheimer's medication. I can't recall my dose or even really what it did (too long ago & on too many medications at once to attribute any positive OR negative results to any specific pill). I know that it's an acetylcholinesterase inhibitor (thanks, Wikipedia), but beyond that I don't really understand what it does. Just thought it odd that two Alzheimer's treatments had been used with P.A.N.D.A.S. patients.

 

What is she taking the Concerta for? I've been prescribed multiple ADHD medications, but the only one that I can remember the name of is Tenex... As with the Aricept it's really hard to say what side effect came from which pharmaceutical during that period for me, but I do remember it not boding well with me. I didn't have food issues back then but I remember my anxiety & depression being pushed over the edge whenever I was on those types of medicines. Maybe you could try a smaller dose or an alternative pill that inhibits her appetite less? just a suggestion.

 

Besides that, I've been vegetarian for six years & gluten-free for almost two months. If you'd like me to talk to you or your daughter about food issues (I have recently developed choking fears, as well) I would be more than willing to.

 

Emerson,

 

Glad to hear you are on this forum too. I have been worried about you actually as you are looking for a new doctor. Omega 6 oils are "poisonous" from an inflammatory standpoint and will really affect your PANDAS in a bad way. Corn oil, canola oil, and all vegetable oils EXCEPT for Olive Oil cause massive inflammation. Cut all of them out of your diet immediately. (Including Doritos, Cheese Nips with Omega 6 trans fats mixed with pure carbohydrates - death food for inflammation) Use only Olive Oil and Butter. I personally buy Omapure IFOS certified Fish Oil at $20 per bottle of 120 capsules. You buy them in lots of 10 to get this price.

 

For your condition, I would take 15 capsules of Omapure per day which is an Eskimo dose. This will dilute the Aracidontic Acid (AA) which is causing the inflammation in your brain. The EPA in pure Omega 3 IFOS fish oil can only dilute AA which will result in decreasing inflammation. If you get on this fish oil and go off of it for two weeks remember that you will return to your previous inflammation state. If you quit, you go back in other words.

 

There are other benefits to the fish oil, but you'll know them soon enough. Please stay away from useless flaxseed oil, Omega 3,6,9 supplements and other brands of Omega 3 which are not 2/1 ratio EPA/DHA and IFOS certified for pharmaceutical grade. The best you can get is OmegaRX by Dr. Barry Sears. Get the liquid oil if you can afford it. Sears' products are the state of the art.

 

I am not sure why Blake is on Concerta. Her pediatrician keeps her on it because she was misdiagnosed with ADHD. She will fail out of school if she is not treated for this. When she is treated she, like Sammy, gets perfect grades. I'm not sure how I feel about this... good grades... malnutrition on the other hand. It's hard to worry about school with PANDAS, but I'm not the custodial parent here. I am winning a slow, but difficult battle with her mother for recognition of PANDAS cutting edge treatment. Blake's mom thinks I'm in this because I'm overreacting. She sluffs off the strangest behavior as normal when it is PANDAS. It's been a real problem.

 

In all honesty, you blow me away with just how much you know about this. I have been taking flaxseed oil, but I'm not sure of the dose. Animal products do NOT bode well with me at all, so would fish oil still be a good idea? I can eat dairy, but I haven't eaten meat in six years. I just don't want to take it & find out that even though it's relieving the inflammation, it's setting off something else. I had NO idea about the vegetable/canola/etc... oil, thank you so much! I don't eat much cooked with oil since my diet is so restricted but I will be sure to stay away from them now.

 

What is OmaPure? I don't believe I've ever heard of that before. What does it do, where can I get it?

 

Pharmaceuticals for misdiagnoses are a slippery slope. Have you seen any positive results on the Concerta, in respect to attention problems or anything else? & I remember you talking about your wife's lack of support. I'm very sorry. Don't give up your fight! Get custody if at all possible so that your daughter can get better! Parents like you are inspiring. Best of wishes to you & Blake. <3

Edited August 20, 2010 by Hierge