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New eBook: Your Child Has Changed; Should You Consider PANDAS?


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Could PANS/PANDAS cause high blood pressure and brain seizure with additional infection?

seisure high blood pressure pans pandas frequent urination dilated pupils showers lips licking giberish talk eyes rolling

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#1 etna13

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Posted 19 March 2017 - 12:38 PM

We are new to PANS/PANDAS. After weeks of research I'm certain my 7 yr old son is in PANS/PANDAS flare. 18 months ago he started having frequent urination (day/night) that would come and go for no reason. He also had bet wetting. Our GP did all possible tests and discovered nothing. He's always had poor gut health and gluten/diary intolerance. Late Oct 2016 he had a strep throat (clinical diagnoses). Throat swab was never taken. Mid Nov we noticed him making facial grimaces, licking his mouth (red ring around mouth was there), super irritable, pupils dilated on and off. He also became very hyperactive especially in the evening and it became so hard to make him go to bed. He started refusing to play his piano saying it is too hard. His focus seem to deteriorate except when playing video games.

Mid Jan he started vomiting, had stomach pain and headache and was very weak (no fever, no diarrhea). Both me and my husband had the same virus and similar symptoms but only for 2-3 days. The same week he started taking showers. Nothing could stop him! His symptoms were much worse in the afternoon and evening. Few days later, same symptoms came back much harder. In the ER they discovered high blood pressure and he eventually had PRES (brain seizure). We spent 11 days at he hospital and doctors discovered nothing. Unfortunately, they never tested his ASOt.  His autoimmune panel was negative. At the hospital, he continued to take showers, had major fight/flight responses, felt like hot flushes. He has redness on his face on and off that looked like Lupus butterfly. He became very irritable and constipation was very bad. We went home with no answers after his blood pressure self-regulated. 

In the first days we noticed he started talking and singing gibberish language. I also noticed he had short term memory issue. Facial grimaces became very noticeable (eyes rolling, face twitching, tongue sticking etc.) Few days later it was like someone turned on a switch on his behavior. He started talking about suicide, not caring, he behaved like he was possessed. We were walking on eggs around him. He started having rages (run for a knife to kill me, throw chairs around the house). His strength was unbelievable during these rages that it took my 6" husband to restrain him. His voice would change and became very autocratic during these flares. He still continues to take his showers in the evening; always has to eat after that shower. He could not stand clothing on him (has to sleep naked); his always been too sensitive to clothing tags, smells etc. His pupils were very dilated during these flares. Every morning he would wake up mad. He craved sugar. He would go from depressed to full of rage. One night he was hitting a pillow for over an hour to the point his knuckles were almost bleeding. Moment he would come out of his flare, he would come to me and say "Sorry Mum I don't know why I'm doing this."

The other morning I noticed he was playing piano with his fingers while sleeping. Symptoms come and go like crazy. In the meanwhile, strep was found on opening on his penis and in his stool among with 2 other aggressive food poisoning bacteria (which makes us think that was the Jan trigger while he was already in PANS flare). Stool test showed that probiotic is not even cultivating in his gut due to bacterial overgrowth. We had whole family tested and staph was found in his Dad's and Brother's sinuses. They are being treated with abx.

After reading about hand writing and math skills, we checked his school agenda. (note that he always had the most beautiful handwriting a kid can have). Before he crushed mid Jan his hand writing became illegible (his teacher sent note home wondering what happened!). At the age of 5 he did grade 2-3 math (he was coded as gifted student 2 years ago). He is struggling now with basic math. He could not remember our home phone number and refuses to do any homework or reading. Is is possible this is not PANS/PANDAS??? During his acute flare, he used tons of inappropriate words and body movements making us shocked (he still occasionally does it).

 

We changed his diet and started with everything natural to help (curcumin, 2 other probiotics, olive leaf extract, digestive enzymes, tons of chia/flex seeds etc). We also started him on antibiotics (Augmentin). He seems to be getting out of this flare now. We use melatonin in the evening which seem to calm him down and help him fall asleep. 

After researching and stumbling upon PANDAS (after one of nephrologist made a comment that strep might have gotten into his kidneys and caused high blood pressure and seizure), we are almost certain that he was in PANDAS flare when another 1-2 infections hit his little body and pushed him into another severe flare. His ASOt is just slightly elevated (200 upper limit, his is ~270). 

We are waiting for his Cunningham Panel test to come back and see what else we do now. Our GP and naturopaths are very supportive while our pediatrician (who is suppose to get us back into the system) is beyond dismissive and cold. His suggestion is to place us back in line for neuropsych (months waiting time). 

I have read everything I can find on PANS/PANDAS, watched videos, read stories, talked to the parents. I could not find anything else that fits all these symptoms. One things that does not fit is the high blood pressure and brain seizure. Is it possible that could happen when child is already in a flare? Is it possible that my son fits more into PANS then PANDAS? He has no food restrictions and is not clingy to me either. However some days he refuses to go to school. We cannot make him go. He cannot explain why is he taking his showers, Said he simply has to take them.

Anyone out there with a similar situation? Is it possible that strep was hiding all this time in his bladder and caused on/off frequent urination, bed wetting? And when he got another strep infection  in Oct, it pushed him in milder flare; Then another infection in Jan pushed him into severe flare? We live in Canada where PANS/PANDAS is not even a recognized diagnoses. When I brought it up with the ER doctor he said my son does not have it as he is not washing his hands all the time! His ped said he saw two cases in his career but also never heard about Dr. Sweedo or Cunningham panel test. He told us in the nicest possible way to suck it up and go back to routine life. We are mad, confused, scared, worried in 24/7 crises. Both me and my husband are on the edge of loosing our jobs. Any advice, personal story will help.

We are fearing his next flare will be worse so IVIG is an option (we received a contact via another family who did it). Thanks all!

 




#2 bws1565

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Posted 20 March 2017 - 12:59 AM

Another diagnosis you might want to look into is Lyme disease.  It does cause seizures, and alot of the behaviour you describe.  And it is helped with antibiotic. 

Please check this out, as we chased the Pandas route for 5 years until we discovered that our daughter has Lyme/Bartonella.



#3 bobh

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Posted 20 March 2017 - 11:51 AM

We are also in Canada, and although there are very few doctors recognizing this disorder, there are a few, and some good support groups.  PM me if you would like more info.  We too have faced many a dismissive doctor.

 

We have had many similar symptoms that you describe, more OCD (handwashing) and less rage (though he has broken 2 walls, that is over several years - so pretty calm compared to some).

 

I haven't heard of actual real seizures being associated with PANS or PANDAS, but we did have seizure-like symptoms over a few months.  We knew they weren't real seizures (because he could look right at us and we knew he could hear us, but he couldn't talk).

 

Even if your son's symptoms are true seizures, I would think (this is going out on a limb) that brain inflammation (which is the presumed process) could be connected to seizures.  With all the other symptoms you describe, I thing you shouldn't let this one thing slow you down from pursuing the idea of treating as PANS or PANDAS.



#4 bobh

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Posted 20 March 2017 - 11:56 AM

Oh ...do check out lyme if you think it is relevant - it is also a known PANS trigger.  For an authoritative voice on that, check this 1-minute video by the chair of the International OCD Foundation's Scientific Advisory Board, Harvard med school psychiatrist Dr. Michael Jenike:

 

https://www.youtube....h?v=qDuxlDWMgso

 

Near the end, lyme is listed as one of several possible triggers.



#5 bws1565

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Posted 20 March 2017 - 03:29 PM

Bohb,

 

The staring episodes you describe are called absent seizures.  In our case they were caused by bartonella.  They definitely need medical attention.



#6 bobh

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Posted 20 March 2017 - 04:46 PM

Oh sorry - didn't mean to imply that our son was staring, it's just that when we got his attention, he would be able to look at us straight in the eye, but not to speak. The neurologist that diagnosed him with Tourette's, explained this (we showed him a video) as " psychogenic" - due to psychological causes. Boy, were we ever upset with that.

We did check for lyme and coinfections, and found ehrlichiosis, which was treated with abx.

#7 etna13

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Posted 21 March 2017 - 03:24 PM

Thanks a lot for your responses. My DS seizure was major. He could not lift his head, nor to move his eyes. Was unresponsive. It lasted for over 15-20 min which is when he was given IV seizure meds to slow down his brain. The docs believe it was caused by high blood pressure but are not certain.

How do we test for lyme? Can our GP order those tests?



#8 bobh

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Posted 21 March 2017 - 06:35 PM

Canadian lyme tests that are covered by our healthcare system have (in my humble opinion) a high false negative rate (they are like the CDC tests - very conservative).  Only a few doctors recognize that, some doctors including at reputable institutions don't accept that there is even such a thing as chronic lyme.  So, it is another controversial minefield of trouble in the medical system.  You could get the canadian test done (if you can convince an MD to order it for you - that is itself sometimes a high hurdle), and if it comes back positive you can certainly run with that result (i.e. false positive rate is very low).

 

We did our test at Igenex in the U.S.  That test needed a medical practitioner to order, sometimes naturopaths can do it as well as MDs.



#9 bws1565

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Posted 21 March 2017 - 10:15 PM

You post sounds like a voice from the past.  I can relate to many of these symptoms!  Even if your troubles are strep related, they could still be stemming from lyme causing an incorrect immune response.  I can definitely relate to long showers!  and sensitivity to touch (bartonella related)  Our first clue was a borderline low WBC.



#10 Sirena

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Posted 21 March 2017 - 11:58 PM

Way to familiar...our journey started with strep and negative "standard" it/Tim Lyme tests and lots of treatments over a year until we finally found and started treatment for Babesia duncani, bartonella and Lyme. Babesia ca lead to nasty horrible PANS. Cunningham and full igenix panel was well worth it for us.

<p>DS7 Strep B May 2015 w scarletinna type rashes, high fevers and extreme change in behavior, neurological abnormalities, invasive thoughts, extreme loss of appetite, rages. Loss of interest in preferred activities, etc. Course of amox. MRI, spinal tap, EEGs Lyme, Bart, etc, etc. ibuprofen helpful. Got 2nd course Amox and spiked 104.5F fever followed by tonsil eruption. Meanwhile DD was positive strep A 2x, likely carrier. DS, dx Pandas June/July. Clindamycin. T&A September 2015. Clindamycin and one round of Azith. IVIg in December, 3-day Solumedrol pulse in Feb. Continuing on long term Azith, probiotics, Vit D, & Fish Oil. Added OPC antioxidants in February.

Rogers for ERP therapy. Helped with some of the severe anxieties. Minimal help resolving aggression, rage, out bursts which continue to be modulated by ibuprofen dosing. OT evaluation helpful- gross motor regressions. OT (one trained in sensory processing disorder) helpful with coping skills. Work in progress... Regroup/review whole situation. Decide need to look more for underlying infections...July 2016 flaring. Igenix panels and Moleculera sent out. Igenix positives for **Babesia duncani***. Llmd added to team. Starting mepron and clindamycin pulses for Babesia. Some Borrelia specific bands are positive but others are "Indeterminate."  Seems likely that Borellia is in fact an issue...possibly Bartonella too, following up with LLMD. Meanwhile, Cunningham Panel (Moleculera) results are in CaM Kinase II is sky high at 231% of baseline. DRD1 is 4000.... DRD1:DRD2 is 4:1.  Dr. L recommending more IVIG and we are working on Insurance &  logistics for that. 


#11 Sirena

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Posted 22 March 2017 - 12:00 AM

Way to familiar...our journey started with strep and negative "standard" it/Tim Lyme tests and lots of treatments over a year until we finally found and started treatment for Babesia duncani, bartonella and Lyme. Babesia ca lead to nasty horrible PANS. Cunningham and full igenix panel was well worth it for us.
  • Sirena likes this

<p>DS7 Strep B May 2015 w scarletinna type rashes, high fevers and extreme change in behavior, neurological abnormalities, invasive thoughts, extreme loss of appetite, rages. Loss of interest in preferred activities, etc. Course of amox. MRI, spinal tap, EEGs Lyme, Bart, etc, etc. ibuprofen helpful. Got 2nd course Amox and spiked 104.5F fever followed by tonsil eruption. Meanwhile DD was positive strep A 2x, likely carrier. DS, dx Pandas June/July. Clindamycin. T&A September 2015. Clindamycin and one round of Azith. IVIg in December, 3-day Solumedrol pulse in Feb. Continuing on long term Azith, probiotics, Vit D, & Fish Oil. Added OPC antioxidants in February.

Rogers for ERP therapy. Helped with some of the severe anxieties. Minimal help resolving aggression, rage, out bursts which continue to be modulated by ibuprofen dosing. OT evaluation helpful- gross motor regressions. OT (one trained in sensory processing disorder) helpful with coping skills. Work in progress... Regroup/review whole situation. Decide need to look more for underlying infections...July 2016 flaring. Igenix panels and Moleculera sent out. Igenix positives for **Babesia duncani***. Llmd added to team. Starting mepron and clindamycin pulses for Babesia. Some Borrelia specific bands are positive but others are "Indeterminate."  Seems likely that Borellia is in fact an issue...possibly Bartonella too, following up with LLMD. Meanwhile, Cunningham Panel (Moleculera) results are in CaM Kinase II is sky high at 231% of baseline. DRD1 is 4000.... DRD1:DRD2 is 4:1.  Dr. L recommending more IVIG and we are working on Insurance &  logistics for that. 


#12 etna13

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Posted 23 March 2017 - 09:43 PM

Thanks all for responses! I think our next step is to test for lyme (full igenix panel) via our naturopath. We are day 6 on Augmentin (had 7 days of Bactrim prior to Augmentin). Would Augmentin help with Lyme too? We are seeing improvement.

 

Thankfully rages and severe irritability seem to be gone for now. However, he is still making facial grimaces, rolling his eyes, sticking his tongue (out on a side), laughing out (almost too much), talking gibberish. All these symptoms are on and off. There are times he is himself and then symptoms just start and I can't stop him. No matter how many times I remind him.

 

Evenings are hard. He is so hyperactive in the evening and not sleepy. Last night we left him stay up to test if the things are getting any better. He kept going till 11:15 pm and then just crushed! I'm worried as I don't think he is getting enough sleep. Anyone experiencing anything like this?

The other strange thing I noticed is his shallow breathing while sleeping. There are no deep breaths in/out. Shallow breath in and fast breath out. He's never had this before. Is this common with PANS/PANDAS?

 

Thanks all for all the great info. I have learned so much from these forums!

 

And, we have changed out diet completely (we always tried to eat well but last few months were not that great). I think my DS gut health was very poor lately. 



#13 etna13

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Posted 23 March 2017 - 10:50 PM

Just when I thought we are out of deep woods, my DS7 had a major rage tonight. He was laughing maniacally while we were trying to film him (to show to the doctor). Once he figured it out, he went mad.

Anyone out there experience these maniacal loughs?



#14 bws1565

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Posted 23 March 2017 - 11:59 PM

Yes, my kids had a hard time falling asleep, and a hard time waking up in the morning.  This is typical with late stage lyme (adrenal fatigue).  Shallow breathing seem like babesia to me....

 

The best starting point of antibiotics would be Amoxicillin, and then doxycycline (if he has all his adult teeth).  We had good success with Zithromax too. Unfortunately the antibiotic would need to be changed every 30 days, for it to be continue being effective in avoiding Lyme cysts.







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