PANS and allergies?

[KarenWauters]

Hi, I am new to this site and am just beginning to explore PANS for my son. Ryan, 9 years old, who has been treated for bipolar disorder for 3 years, without significant periods of stability. There is no family history of psych disease we can detect.

 

We were referred to a PANS md, dr Trifeletii and saw him.last week. Although strep is neg, and first work up of bloodwork was negative, he felt given his 1. Significant allergies in spring. 2. Behavioral stability when he has a fever. 3. Family history of very severe food and seasonal allergies, Graves' disease, And Raynauds. 4. Paradoxical response to traditional BP meds 5. Odd ratio of certain histamines (??) comparing at different times of the year that correlates with Ryan's "worst" behavioral periods. These reasons were worth exploring a PANS factor

 

Our Motrin trial was fantastic, first 10 days were the first periods of stability ds has had in years. Dr T was encouraged by this. Day 10 was the day our daughter had fever and a cold. Day 11 Ryan s behaviors reemerged, with demanding, yelling, provoking fights, poor appetite, and internal restlessness/ hyperactivity with the perception of being bored. These continued thru day 15 of Motrin trial. He had cold symptoms of a cough, no fever, day 12. Today, day 16 , he is sweet and stable ( mostly). Dd was better about 4 days after her initial cold onset too.

 

Does this sound familiar to anyone? Does Motrin work to a certain level, but fail to work with acute onset of infection?

 

We also have an appt w Dr Bouboulis in Ct but not till June. Our psychiatrist recommended him first, as Ryan's problems are allergy/ immunology and she thought it would be a good fit. We saw Dr T since he had apps right away. We are trying to determine if we can continue to afford Dr T as well, and if it is worth it. Ct is 3 hours away.

 

Q. 1. Can PANS be caused from allergies or colds?

2. Why is there controversy in the medical field if PANS exists?

3, are all PANS doctors fairly equal? How do you determine who is the best one for your child?

4 how long can a 9 year old child stay o n Motrin before getting gut or other side effects/ problems?

 

Thanks for reading all of this. Any comments are greatly appreciated!

Karen

[MomWithOCDSon]

Yes, Ibuprofen can help reduce inflammation and alleviate some symptoms, but it may not help enough in certain circumstances, and, t any rate, it is only addressing the inflammation itself, and not what's driving the inflammation.

 

I don't know if PANS can be 100% caused by allergies, but allergies can certainly contribute to it, exacerbate it, and/or prolong it. Many of us have kids who flare during allergy season. We use histamine blockers like Pepcid to help our son.

 

Why is there controversy? Why does the earth rotate on its axis?! Seriously, though, I think it's the extended fight for ego and territory among the various medical disciplines, the unwillingness to cede territory to one another when it comes to crossover between mental and physical health. And Big Pharma probably plays a significant role, too. What will the drug companies do if OCD, Tourette's, bi-polar, schizophrenia and/or autism can be cured or at least controlled by the use of generic antibiotics or supplements, or even IVIG?!?! What will all the psychs do? They might have to learn to actually engage in therapy instead of relying upon a prescription pad!

 

And then, to be fair, we remain a little behind with respect to research in the area of PANDAS/PANS, and currently, many of the top docs and researchers in the field are not fully aligned with respect to treatment protocols or even the linical diagnosis. We're working hard at playing catch-up, but it's a slog!

 

Each PANS doctor has his own perspective and treatment protocol so, no, they're not all the same. Sometimes we select one by geography, and sometimes we select one by protocol, and sometimes we select one purely by "gut.". The truly remarkable thing about Dr. T, in my opinion, is his intellectual curiosity. He's not one to shut you down or tell you he's at the end of what he's willing to do for you or your child. He keeps looking, trying different interventions, in search for the one(s) that work. That's not to say the other doctors aren't good and caring, too. It's just that they tend to operate differently. I would probably keep my appointment with Dr. B and see how it goes. How does it feel in your gut? Then choose.

 

Finally, as to long-term use of Motrin, I've heard various things . . . From there's no issue with it at all, to issues of possible toxicity. You're probably best off to run it past the doctor, but you might also consider trying some other anti-inflammatory items, too, such as vitamin D3, omega 3's, curcumin, turmeric, OTC anti-histamines, quercitin, coconut oil. Many of these are less taxing on the gut and liver but will assist in controlling inflammation. It usually takes a little longer to see results than with ibuprofen, though.

 

Sorry you're dealing with this, but welcome to the forum!

[KarenWauters]

Yes, Ibuprofen can help reduce inflammation and alleviate some symptoms, but it may not help enough in certain circumstances, and, t any rate, it is only addressing the inflammation itself, and not what's driving the inflammation.

 

I don't know if PANS can be 100% caused by allergies, but allergies can certainly contribute to it, exacerbate it, and/or prolong it. Many of us have kids who flare during allergy season. We use histamine blockers like Pepcid to help our son.

 

Why is there controversy? Why does the earth rotate on its axis?! Seriously, though, I think it's the extended fight for ego and territory among the various medical disciplines, the unwillingness to cede territory to one another when it comes to crossover between mental and physical health. And Big Pharma probably plays a significant role, too. What will the drug companies do if OCD, Tourette's, bi-polar, schizophrenia and/or autism can be cured or at least controlled by the use of generic antibiotics or supplements, or even IVIG?!?! What will all the psychs do? They might have to learn to actually engage in therapy instead of relying upon a prescription pad!

 

And then, to be fair, we remain a little behind with respect to research in the area of PANDAS/PANS, and currently, many of the top docs and researchers in the field are not fully aligned with respect to treatment protocols or even the linical diagnosis. We're working hard at playing catch-up, but it's a slog!

 

Each PANS doctor has his own perspective and treatment protocol so, no, they're not all the same. Sometimes we select one by geography, and sometimes we select one by protocol, and sometimes we select one purely by "gut.". The truly remarkable thing about Dr. T, in my opinion, is his intellectual curiosity. He's not one to shut you down or tell you he's at the end of what he's willing to do for you or your child. He keeps looking, trying different interventions, in search for the one(s) that work. That's not to say the other doctors aren't good and caring, too. It's just that they tend to operate differently. I would probably keep my appointment with Dr. B and see how it goes. How does it feel in your gut? Then choose.

 

Finally, as to long-term use of Motrin, I've heard various things . . . From there's no issue with it at all, to issues of possible toxicity. You're probably best off to run it past the doctor, but you might also consider trying some other anti-inflammatory items, too, such as vitamin D3, omega 3's, curcumin, turmeric, OTC anti-histamines, quercitin, coconut oil. Many of these are less taxing on the gut and liver but will assist in controlling inflammation. It usually takes a little longer to see results than with ibuprofen, though.

 

Sorry you're dealing with this, but welcome to the forum!

[KarenWauters]

Thank you Nancy! That is fantastically helpful!

[nicklemama]

Karen- I don't know if allergies can cause PANS or not. My DS certainly has them and we treat them w/ daily claritin recommended by an allergist. Many infections can cause PANS, not just strep. My DS has never tested positive for anything. He was first diagnosed by Dr T. We now see Dr K in Chicago because he is closer. Antibiotics gave my son a major turnaround. Dr T was brave enough to prescribe them w/out any evidence of infection. I can say that my son's PANS started two days after a FluMist vaccination. That is the direct link we have to his PANS. He was 5.5 yrs old at that time. It took us a yr to figure out the PANS. In that time, we were told DS had a lot of different things....sensory processing disorder, mild transient tic disorder, anxiety, oppositional/defiant disorder, aspergers and bipolar II. Everyone had a different opinion. The only opinion and treatment that has helped him was his diagnosis and treatment for PANS. He just turned 9. Its been a long road, w/ remission/recovery and then pneumonia triggering another exacerbation and having a second round of IVIG. I'd follow Dr T's lead. Keep your appointment to see Dr B and get different look at it. Many of us see more than one PANS expert. They each have their strengths and weaknesses.

[EmilyK]

Dr. B said that my son's allergies can exacerbate his situation - adding inflammation to an already inflamed system. I now add notes about known allergen exposures to the daily log I keep, now that we know he's allergic to dogs and mice as well as the dust and mosquitos.