Review this plan?

[ibcdbwc]

Long history with manageable PANS (first triggered by strep then flu and parvo). Did fairly well until September of 2013 with recurrent colds, coughs, other viruses, sinus infections. Since then DS12 flares have been more frequent, dramatic and debilitating with headache, eye pain, joint pain, flushing...

 

New plan starting over - recently diagnosed with autoimmune encephalopathy (anti-adrenal antibodies and severe flare with documented acute cognitive dysfunction). Please tell me what you think of this plan?

 

Now on Azith and Augmentin (and probiotic). Doctor wants to do 1 week steroid taper given continued nasal turbinate and bronchial inflammation but since DS is not flaring terribly right now I am hesitant. Ordered new rounds of bloodwork to test family for myco P. and strep - along with the usual suspects et cetera.

 

Depending on lab results will consider moving to Igenex. Doc concerned about lyme and bartonella. Wants to additionally perform more in depth allergy testing given that our worst flares are always in the spring. The only positive test in past has been for dust mites. Also his IgE for the first time ever is above normal - before it was always below normal even though we thought we had allergy issues. Our house also tested with higher than normal count Aspergillus so mold is likely a key player.

 

Once allergy and infectious triggers are addressed, possible IVIG.

 

My questions: do I request MTHFR investigation as well? Is the above the proper order to "peel the onion?" I have lingering concerns about gut health and yeast overgrowth while on antibiotics and am not sure how to address. Doc said a probiotic is enough.

 

Many thanks for all your help. This forum is so healing.

 

 

[pr40]

I envy how well organized you are and how lucky your are to have this dr working with you. On MTHFR, no point in doing just it. Do the what 23 and me offers since just MTHFR gives you an extremely limited picture.

as far as I can tell you are doing most you can do and in the right order. you don't mention diet -- perhaps gluten and casein free -- and that is the only thing I would add if you can do it.

on yeast, saccaharomyces boulardii might be helpful. you can add it to probiotic. but watch for negative reaction like becoming more aggressive.

gut health really requires you to be off abx. only then can you build a good flora. that does not mean you shouldn't do probiotics, of course. l-glutamate might be helpful, too. 23 and me will tell you about a gene for leaky gut. if your kid has it, there are things you can do.

[ibcdbwc]

Thanks for your reply! We've been on this journey a long time, had a good handle on things for a long time and then boom. So we are restarting, digging deeper and more fully. 23 and me is always on my radar - just haven't haven't been able to dig that far yet with everything else going on. From your advice it's an important layer. Will add, once infection clears and testing for allergies/infection done. Working on diet slowly!

 

The one thing I've never been very successful with however is ensuring gut health while on antibiotics. I guess that is fairly impossible as you say. I think we currently have a candida problem after adding the Augmentin to Azith. DS is bloated a bit and edging toward hyper. Actually I don't think, I know we have a problem. He's scratching his head and the cravings are coming back. Just not sure how to deal with it gently. I am concerned about a die off reaction as it's happened before with diflucan and it was very difficult. Tipped him right over the edge. Will try sacc b.

 

 

 

What a journey!

[sf_mom]

Just dealing with mold and methylation could take you a long way towards recovery. Lower MSH levels due to mold toxins will also continually keep the door open for infection and make the chronic ones harder to bring to a manageable level. Detoxing mold is not easy and cholestyramine can strip vitamin/minerals so supplementing appropriately for methylation is important. Cholestryramine will also initially cause symptoms to flair and sometimes intensely.

 

Does your DS have immune deficiencies? If so, then maybe put IVIG to the forefront of treatment. If not, I would proceed with treating methylation first and then detoxing mold second. It could take several months to treat methylation or build up on the necessary vitamins and then maybe even a year or longer to detox mold. I would use Spectracell testing while detoxing mold to confirm vitamin/minerals are a remaining at appropriate levels. Spectracell is not a serum test, it tests the inner white blood cell to confirm proper utilization of vitamin/mineral levels.

 

We are using the Real Time Labs Mycotoxin Urine test as baseline for mold. Every time you draw blood I would continue to draw IgG subclasses. The repeat subclass might help you to get insurance coverage for your child in the future. Mold plus infection can definitely cause allergy like symptoms.

 

FYI: Spectracell test glutamine levels as well.

[ibcdbwc]

What is the level of deficiency most commonly seen for coverage? DS has had three years of labs consistently showing subclass 2 and 3 deficiency but his levels now are just right outside the low end reference range and his total is normal.

Edited March 3, 2014 by ibcdbwc

[sf_mom]

I think more importantly is the trend.

 

For example, DD was deficient in 1s and 3s and over all serum levels 3 years ago which is common with Lyme. She is now deficient 'age appropriate range' in all subclasses including, IgGs, IgAs and IgMs. As a result, she qualifies easily for monthly IVIG. Thankfully, we retested subclasses about every six months and had at a minimum annual subclass test results to present to our insurance. Even with her immune deficiencies she continued to make progress with her Lyme treatment and had no IVIG treatments. However, there were/are a few remaining symptoms which we are hopeful monthly IVIG will help to bring her closer to full resolution of symptoms. She does not currently have a lot PANS symptoms but also would have been considered more ASD than PANS (brief periods of eye tic with fever, minimal OCD).

[JuliaFaith]

Great list above.

 

Mold was also an issue with my ds. He has been detoxing the entire treatment. There are several options you can find just searching on this forum under "detoxing." He detoxed with chlorella for 3+ years until his last visit. Chlorella could be hard to digest but there are some that area easier than others. There are tabs and powder. Now, he is detoxing with Spectrum ground chia seed. One tablespoon in juice/water/tea/food a day. Both of these are also good for detoxing metals. Ds is no longer 'muscle testing' for mold (after remediation and detoxing).

 

Have you done the 'hair test' for metals and vitamin absorption?

 

Have you done the KPU urine testing?

 

Have you checked for parasites?

 

These are things that our ND addressed at the beginning of ds treatment. Omega 3's for inflammation have always been in protocol as well.

 

Best wishes on treatment!

Edited March 3, 2014 by juliafaith

[MaryAW]

I have really looked into the connection between PANS/PANDAS and histamines lately. I even called the NIMH (no help really). My DD also had only dust mite allergies prior to PANS. She is now allergic to everything! I found some interesting sites that say that certain meds can cause our histamine levels to rise. Ibuprofen and Clavulanic acid (in Augmentin) are on the list:

 

http://ajcn.nutrition.org/content/85/5/1185/T5.expansion.html

 

http://healthypixels.com/?p=1044

 

The meds inhibit diamine oxidase which metabolizes ingested histamines, causing histamine levels to rise. I'm wondering if my overuse of ibuprofen contributed to her allergy problems. We have successfully replaced it with omega 3's. I am hoping that this allergy season will be better tolerated. Last year was tough!

[ibcdbwc]

Thank you maryaw. I will read these in detail tonight! Honestly I'm driving myself nuts at this point. We'd like to be dairy free, gluten free but also maintain an anti-yeast, anti-inflammatory and now a low histamine diet that still enhances/builds up the immune system. Good gracious. Give one thing for something and it causes a problem with something else! Dizzying!

 

That being said, I've always felt we had a histamine overload as previous to this year our worst flares with alway in the spring.

[Rachel]

Has anyone tried using the DAO enzyme? Does this help?