Mild to Moderate PANS?

[Sandy50]

Hi All,

I've just started out here. For years, I've been hoping it was just the ADHD... the OCD... the Tourettes... the learning disabilities but my son is being evaluated for PANS. My husband thinks that I am crazy because his behavior Sx would be considered mild for PANS... some meltdowns, bed wetting, and frequent urination. I just need to know that I am not nuts.

[Swetha]

Hi Sandy50,

 

You are not alone. I am having a similar situation where I am unable to understand if its PANDAS. 

We saw severe exacerbated Tics, anxiety and stuckness in our 10 year old son 8 months ago. And it was given a "tourette syndrome" label by the neurologist. 

 

I followed this forum and with help of some experienced people on this forum made some changes to the diet and saw some major changes. We were doing pretty decent and suddenly he had a terrible Strep throat which we had to treat with antibiotics  and just after 2 days of antibiotics all his symptoms were gone for next 7 days. (Till his antibiotics ended). 

The very next day his symptoms came back. This left me thinking, we might be dealing with PANDAS! His tonsills are swollen and our paediatrician doesn't believe in PANDAS. 

I am now trying to figure out ways of getting the tests done for the Strep fitters etc , which is all very new to me. 

I wish the main stream doctors were more understanding/Open towards these kind of issues. 

I am holding on to the hope that things will get clear soon and we will find answers soon. With the help of this forum ofcourse. 

Good luck,

Swetha

[Swetha]

By the way we are dealing with Tics, some crazy Tics while reading books(he is an amazing reader). 

Some amount of anxiety with his health and mild OCDs. Frequent urination and bowel movements too. Sometimes he complains of stomach aches and joint pains. 

All this after he is on a very strict GF,DF and egg free diet. He is a vegan now and eats only organic whole foods and every meal is cooked at home.

[bws1565]

Swetha,

I just want to point out that if your son is on a very strict GF, DF, and egg free diet, and is vegan, he might be severely deficient in B12 and other B vitamins.  This alone can cause tics!

If he is positive for MTHFR, the problem is even more so, he will need to supplement with a good Methyl B Complex.  

I have seen very good results with supplementing with B complex patches from the company Nutripatch.  Just be aware, diagnosing this issue is not so easy and is not a simple blood test. (although sometimes it will show up on regular bloodwork)

[Swetha]

Thank you so much for your response, Bws1565!

I have given B12 a shot, but recently his blood work showed too much B12 and my husband was too worried about giving too much B12. I am not sure if the blood can show high levels and the child may still be deficit! 

But I do agree with your observation that B12 did make a huge difference to my son. We are going down slope again since I removed B12! 

I keep coming back to one question which is troubling me right now- all his symptoms went away when he was on penicillin for 7 days? (But when he was put on Cefachlor, it didn't have the same effect.) 

His tonsills are swollen. 

[Atex]

FWIW, my daughter's tics were very much affected by immune system activity.  Hers would ramp up in the days leading to a sickness, and then would completely go away once the sickness symptoms came out.

[bws1565]

Swetha,

High blood B12 would show a functional B12 deficiency; requiring other vitamins to help the B12.  They are Betaine anyhydrous (TMG), P5P, and Methyfolate.

Also, most B12 shot are cyancobalmin, not methyl which might be difficult for your child to absorb.

This is a very complicated topic.  I would recommend the book "Could it be B12?"  available on Amazon.  

[MaryAW]

@Swetha Magnesium glycinate (we use Metabolic Maintenance) is also very good for tics. Take before bed to help with sleep.

Regarding B12, a blood test only shows circulating B12, not intracellular - which is what matters. Our doctor says excess B12 is "peed out." My daughter called B12 her magic pill! I would not back down on that!!

@Sandy50 Frequent urination was an early sign for our daughter.

A lot of PANS doctors feel there is an underlying illness causing the PANS. Obviously for PANDAS, it's strep. Make sure to check for mold (RealTime urine test), Lyme and other coinfections (Igenex) and especially bartonella (Galaxy Diagnostics for this coinfection). Also check IGg levels to be sure he can fight whatever he has.

There is a lot more info out there now, so read up!

Three great books: Demystifying PANS/PANDAS by Dr. O'Hara, What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD, TOXIC by Dr. Nathan. All on Amazon.

Two great websites: Aspire.care and Pandas Physicians Network: pandasppn.org

[Swetha]

@MaryAW Thank you very much for your kind response. I haven't found a Pandas/Pans doctor yet. I am on a hunt for the same here in Austria. 
My Paediatrician doesnt seem to believe in Pandas. 
I have been using Magnesium Citrate and will try switching to Glycinate from Metabolic Maintenance. Also which form of B12 do you recommend? 
I am giving B12(Methylcobalamin & Adenosylocobalmin) from the brand KAL which I ordered on iHerb. 

It would be of great help if you can give me some of your supplement recommendations. 
I am dealing mainly with Tics and some strange ways of walking,sitting,posture issues (while reading in particular). 
I also see that his speech becomes slurred and his breathing patterns are also affected. 

Thanks in advance and every response is truly appreciated 🙏

Swetha
 

[KSandy]

I've read so many books about PANDAS, and one thing they all talk about is lowering inflammation through diet changes, and making sure the omega levels are balanced. My daughter had too much omega 6 and not enough omega 3, which made her inflammation worse. I cut out all cooking oils except high quality olive oil, and started giving her omega 3 and DHA from nordic naturals as well as flax seed oil. 

You night find these books helpful:

The Nemechek Protocol

Anything written by Dr. Jill Crista, but especially A Light in the Dark

Eat Dirt

The Dirt Cure

 

 

 

[Atex]

Yes, inflammation by immune system response (allergy or other) seems to be a common theme for both PANDAS and TS.   

My daughter's tics drastically improved around the same time that we transitioned away from canola and vegetable oil for cooking (it was one of many things we did). 

PS.  Keep your notes on inflammation reduction around in the event you ever have lower back nerve issues. The similarities are shocking.  If you wonder why tics and lower back pain increase around dinner time, there is definitely a daily immune schedule going on.

Edited July 31 by Atex

[MaryAW]

@Swetha Can you get a Lyme test done? In the US, Igenex is the best. Maybe you could get a US doctor to do telehealth with you? I have no idea if they would, but worth a try!

You can try Epsom salt baths for relief, but be careful because it can cause loose stools. Also for tics, magnesium glycinate worked really well for my daughter - she used Metabolic Maintenance 125 mg and did not cause loose stools for her. You can try a small dose of magnesium glycinate before bed - maybe open the capsule and pour out half, so you give half dose. Always start with a small dose and go higher to avoid a flare (not every supplement helps with every child).

Always try one change/addition at a time so you know what is working. Wait 5 - 7 days before adding something new or 3-5 days before increasing a dose. If something causes a flare wait for it to settle down before trying something new. Keep notes of what you're adding and if it works or not. Also be aware of triggers for your child. My daughter was triggered by mold, so we had to avoid moldy places. We learned where they were because she flared so badly.

Some people have mast cell activation syndrome. Zyrtec and Pepcid work for that as they are histamine blockers. You can try them and see if they help. Some natural mast cell stabilizers include Neuroprotek (quercetin and other flavanoids) or DHist Jr., perilla seed extract.

Vitamin D3 is hugely important, but you should have the levels checked and monitored.

NAC works for a lot of people, but my daughter did not tolerate that and did better with glutathione. We use Body Bio liposomal glutathione. Thorne is very good too.

She also did well with B12 - CVS brand chewables are actually really effective, also Designs for Health and Perque are all VG - and they taste good too!

My daughter had trouble with sleep, so melatonin worked for her. She used 1 mg when she was younger and takes 3 mg now.

There are a lot of quality brands out there. We have used Thorne, Designs for Health, Metabolic Maintenance, Pure Encapsulations, Nordic Naturals, and many more.

If you can't get a doctor to prescribe antibiotics, you might try herbal antimicrobials. I would recommend reading the books by Dr. Crista and Dr. O'Hara for their recommendations on this.

Try to get your child to eat healthy! Good sleep and good exercise!