looking for expert advice....pandas labs, treatment for a veteran pandas parent

[basilbeth]

Hello,

I already know a lot about pandas, my son has had pandas for 3 years and I'm a nurse practitioner but I have an appt next week with a non-pandas specialist next week for my son. We have a couple of issues that they might be able to help us with, but I need pandas experts advice.

History: my 7 year old son was quickly diagnosed 3 years ago with pandas from a strep infection. His case is mild and treated with a weekly dose of Zithromax 500mg.

 

New issue: In June I gave him his first probiotics (cheap brand...must have had strep strains) and he started with strange rages, ocd and since then has had what we believe is a fibromyalgic pain in his chest, which is constant and painful.

 

do you have suggestions as to what infections to check him for? I understand that some tests need to be run by specialty clinics, but I don't know which tests and the laboratories that run them. I'm hoping to erradicate the chest pain by treating an underlying infection. He has had an endoscopy, ekg and echo that all are normal and had a trial of time without ibuprofen and zithromax. Nothing has helped this pain.

 

This past weekend I did it again....gave him Lifeway Kefir milk that has strep strains. In a couple of hours he started to have tics, ocd and excruciating outer elbow pain to the point of crying and holding his uninjured arm (it's another pain point of fibromyalgia).

 

so, any thoughts of how we should treat that?? a throat culture would not pick up the strep, he just ingested it!

any tests needed or what antibiotic name, dose and duration would you suggest, he is 70 pounds.

 

No one at Children's Hospital is pandas literate or even lyme literate that I have yet found, but they want to help us...they just don't know what to do....they likely will do as much as I suggest......suggestions????

[momslove]

Please quickly disregard my thought here it I sound way off, but I'm thinking outside the box.

 

Would it help to think about his recent severe symptoms as allergic response rather than infection response? Rather than going from infection to antibodies and inflammation, is he going from trigger to inflammation?

 

I would never suggest that you don't look for or treat infection, but maybe inflammation...?

[basilbeth]

sure, I appreciate your response....trigger to inflammation but not necessarily infection....what would reduce inflammation at this point that would take away his chest pain?

a rheumatologist recently ran an immunology panel (regular panel, not one specially for pandas kids) and she said that all of the results were normal....

he's taken plenty of ibuprofen in the past months....steroids needed? not sure what is needed....

[qannie47]

could this be a yeast die off reaction from the probiotic? Early on, when I first introduced probiotics, it caused all the same symptoms that you are describing.

 

Chest pain, could this be from him doing some minor hyperventilating from anxiety??? I only ask, because there was a time in my life where I had anxiety, and I did some mild hyperventilating. Not in any big way, but a lot of long deep breaths, nobody even noticed...however, it cause strain on my chest muscles, and I experienced a fair amount of pain....

 

elbow pain: is he ticking with his arms? If he is doing a weird move, it could cause elbow pain with constant intermittent movement.

 

Optimized Curcumin by Douglas Labs. They are wonderful for ALL kinds of inflammation. I suggest them because I know they are the real thing with the best bioavailability. I no longer need to use motrin and it provided 24 hour relief .... for my pandas son or myself (I have chronic back neck shoulder pain).

 

Don't mean to sound so simplistic, but I always start with the easiest answers....it has saved me time and money....

 

Keep us posted, and good luck.

Edited November 13, 2014 by qannie47

[jan251]

My son had some chest pain off and on from the time the OCD showed up last spring until sometime early this fall - it was very weird. I thought at the time that it was anxiety-related but we never really figured out what it was. It's hard to remember when it got better. He was on Enhansa curcumin for few months and I don't know whether that helped - it well might have. He hasn't complained about it much in a long time, yet he still has plenty of OCD (we are still searching for the right antibiotic, long story).

 

It is reassuring that the echo and EKG were normal. My son has a heart condition and so has those tests annually, and I was relieved when his tests were fine (he also had a lot of home monitoring, forgot what it was called). Our cardiologist is the only mainstream doc who cared about the episode of untreated strep.

 

I do think that my son reacts to some probiotics but it's not exactly clear which ones or why. He tends to do better with the bifodo species. (I think he's just very sensitive right now. I don't know what the right answer is except that we need to embark on some dietary restrictions.) I instinctively stay away from Lifeway Kefir but I can't recall what his reaction was - I don't think that s. thermopolis is in there.

Edited November 13, 2014 by jan251

[SSS]

I thought Lifeway brand Kefir is the one WITHOUT strep strain? My dd9 reacts to yogurts with strep strain, I used to give her Lifeway Kefir for this reason, but it's packed with sugar, by the way.

 

Have you tried full dose antibiotic treatment? If infection is present/ activated, Azith. 500 mg 1x a week is not going to cut it.

 

Yeast overgrowth- could trigger stuff, too....

[SSS]

P.S. Maybe it's time to get connected with a PANDAS/ PANS specialist / Integrated Dr. who better understands- won't dismiss you without a positive strep throat culture when child is clearing flaring with symptoms.

[WorriedDADNMOM]

Basil, Glad your here. Our stories very similar...... Several issues and observations. Let me know if you have any questions I can help with. For us it really was a step by step cascade of increasing symptoms. We have had adverse reactions to vaccines AND bacterial and viral infections. With that said:

 

1) Milk allergy is part of the connection. We had behaviors in middle dd before tic explosion and worst major exacerbation.

2) Eliminating dairy in an intolerant person will help eliminate inflammation and an immune response. During worst of initial exacerbation, yogurt, milk, blue dye......would all cause return or increase in tics/behaviors.

3) Strep, Mycoplasma and EBV(mono) would be good ones to check. Among others.....need more history...family,previous infections etc.

4) Zithromax for possibly 30-90 days(or longer) then transitioning to a periodic (m,w,f) prophylaxis to immune system modulation. Dr Schulman has a video of pandas docs using Zith in this manner. Kinda similar to a tapering of steroids. See this link.

5) Eliminating triggers....milk, pets any thing that illicits an immune or allergy response. .....basically knowing again family history to build as comprehensive a picture as possible.

6) Determining vitamin and nutrient deficiency. Supplementing where needed.

7) Omegas-----Cod Liver oil for fighting inflammation and helping heal the brain......."essential fatty acids" that our just that... essential for our body.

8) Curcumin-----Enhansa.....again anti inflammatory properties.....boosts immune system.

9) Having a sick protocol to "prop up or assist" immune system during viral or bacterial infections.......Zinc, Vit C and Vitamin A I think.

 

I know this sounds like a lot.....but it is what we have done and we are in a good place. It is very comprehensive and thorough. I will say that it has all been under the direction and supervision of a DAN/Integrative Pedi. We had 3 kiddos that were all affected by both vaccines and infections(Strep and myco.....and EBV) Our whole house was in a state of chaos, we had to do anything and everything our DAN said to do. We are glad we did.

 

Should you have any questions, please ask. Good luck and God Bless........It does and can get better.

[jan251]

1) Milk allergy is part of the connection. We had behaviors in middle dd before tic explosion and worst major exacerbation.

2) Eliminating dairy in an intolerant person will help eliminate inflammation and an immune response. During worst of initial exacerbation, yogurt, milk, blue dye......would all cause return or increase in tics/behaviors.

 

If you don't mind my asking, did you discover the intolerances (especially the dairy but others as well) by trial and error or by testing? I find myself questioning the results of the controversial IgG foods testing, as unexpected things turned up but not dairy, which I think may be a problem. (But if he doesn't eat dairy, and eliminates the others, there is virtually no regular source of protein left...) I need to make an appointment for discussing this with a certain doc, but I'd love to hear opinions.

[basilbeth]

thanks everyone for the feedback....I thought I would have a one hour appt with a pandas nurse practitioner via phone (I'm in Madison, WI, she's in California) before my son sees a special doctor next week (non-pandas literate) but the appt was given to me because I complained to the Children's Hospital that noone there seems qualified to help us. I guess I should delay that appt....it's just I am sick that my son continues with this chest pain....but a couple more weeks might be worth it. I really want our children's hospital to do the proper testing and the proper treatment, it's just that they don't know what either is....so I wanted to go to the appt informed to be able to tell/suggest what we need. I am starting to give out the consensus paper that just came out last month in the journal of child and adolescent psychotherapy. it is an excellent paper. and it even mentions a lot about pain that pandas kids can get....they label it as fibromyalgia. but the only treatment they suggest is neurontin, which is a strong drug that basically dulls sensations and the person in general. we don't really want that. I suspect that there is an underlying inflammation or infection that has not been tested for or treated. it's just hard to find the right doctor to do all the right testing and treatments. all would have to be done at this children's hospital or over phone or email. I guess I will just have to accept this fate and change the appt so that I can gather the info I need before I go.

I googled lifeway kefir and it does contain strep strains.

do you know of any yogurt that does not?

my son's pandas is quite mild so that I haven't really done too much in the way of dietary testing or elimination diets.

should we get allergy testing?

his immune panel was supposedly normal. but I imagine there is more that could be done.

i don't believe he has been tested for mycoplasma, bartonella, babesia....

[WorriedDADNMOM]

If I am being honest....I don't know. Some of it by testing and dumb luck I guess. My brothers and sisters and I all had this growing up. Eczema, vomiting......most of us were not breastfed due to milk intolerances. Soy formula. As for testing, I did ask the pedi who was not on board with the Pandas thing to test for Mycoplasma. Testing showed very high IgM which I did not find out about for several months later when we were still fighting the tics, behaviors...then tremors and uncontrolled movements and mutism a couple times.

 

What I do know....3 dd's all with milk "issues" and struggled some with breast feeding and transition to whole milk at 1yo. Oldest......severe eczema on skin no other issues. DD #2 severe projectile vomiting. No eczema.....MANY behaviors post MMR #1 and #2......DD3 youngest......severe colic....and I mean SEVERE. Crying 6-8 hours a day to the point of losing voice. No vomiting and very minimal rough patchy skin. Reactions to MMR #1 and #2 Once we had DD3 and put her on Nutramagin where the formula had the protein broken down she was perfect after that...... up until MMR #1 then #2. This is when we cut milk in DD1

 

We took DD1 off milk and her eczema vanished to perfect skin. This was key for us learning about our milk connection and subsequent issues. We still had milk quite often up until dd2 "came down" with pandas. We think she definitely had it going on for quite some time.

 

With that said.....When dd2 behaviors culminated with severe mental, emotional and neuro stuff......tics, uncontrolled movements and tremors....... I started researching Pandas. It was during the initial issue that having her on Penicilin(after amox) started controlling the tics. So this was the a-ha moment that infection and immune dysregulation are a part of her picture.

 

During the next year.....we tried greek yogurt after tics had been gone for some time. This greek yogurt, unbeknownst to us, had a strep strain in it. Tics were right back. Then we had another issue where we allowed her to have some blue cotton candy.....again within minutes....less than 60....tics come back. I was never understanding of these types of

 

Fast forward to today.....she is mildly having issues. We still have some very mild, In comparison to previous, behavior and emotional stuff. Very few tics that come out of nowhere, but are hardly noticeable.....except to us parents......and they wane very fast. She can have some cheese and ice cream.....with some belly pain during digestion. I could and probably should eliminate all dairy.

 

In summation, I think there are issues with infections/ foods/allergies etc that may be internalizing symptoms. And their severity may vary and be under the radar if you will. But after they come to the surface and you start to physically see tics, major behaviors, etc......I think it is easier to correlate a "trigger".....BUT that does not mean there is not something going on internally. We, as young busy parents, missed it with the 1st two dd's and did not figure it out until dd3.

 

Two of my favorite A-ha videos that really spoke to our situation are as follows. They are pandas, autism and neuro-immune related videos. It really is about connecting ALL the dots. Affecting change in the body by eliminating infections/immune triggers and supplementing where the body can heal itself and and function at peak ability.

 

I hope this helps you in your journey.

 

 

 

 

 

Bunch more here:

 

https://www.youtube.com/results?search_query=pandas+strep