Do these symptoms suggest PANDAS?

[Lulaja]

Ok, longtime lurker, first time poster. First, I want to thank everyone who has contributed to this website. I am so grateful for all the information, wisdom and support I have seen on here and I have only been a reader!

It seems I stumble onto this forum every few months when my 5 year old son starts ticcing and then they go away and I laugh at myself for ever being concerned...

But, now I am pretty concerned. All the symptoms/behaviors over the last year and a half seem to be pointing to PANDAS. We are going to see a doctor tomorrow who was recommended on this forum (Dr. Frederick Lloyd, Palo Alto, Ca). His regular pediatrician thinks I am crazy and will not even return my phone calls. He has a neurology appt. in March but I do not think this doctor treats (or believes?) PANDAS. Can someone please tell me if I am correct in assuming that these symptoms point to PANDAS.

 

-Ticcing that comes and goes: this last episode has lasted almost a month and involves throat clearing (got so violent he broke blood vessels in his eyes) and blinking. He has had tics for about a year and a half, they stick around for about a month and then go away for 3 to 6 months. The tics are different with each episode, it is usually one or two that remain constant throughout the episode, they have been sniffing, blinking, coughing, grunting, throat clearing and bottom clenching.

 

-Major sensory sensitivity: he will only wear crocs and a few of the softest t-shirts and pants. Refuses underwear, socks, jackets, hats. This is new within the last year. He used to let me dress him like Little Lord Fauntleroy with neckties, stiff shoes and argyle socks! It makes me want to scream when people tell me it is because I ALLOW him to get away with it. This morning he and my husband got in a battle of wills and it took over an hour and a half for him to get him to put on a jacket and he was screaming like it was burning him.

 

-His fine motor skills are lacking: he has been identified as highly gifted yet he can hardly draw or write. He refuses to play with toys that call for fine motor skills.

 

-Major social/separation anxiety: this one baffles me. He used to be so outgoing and friendly. When he was in 3 year old preschool he would bound into class, had tons of friends and hated to leave. He is now homeschooled, he was going to kindergarten, but it was getting to hard to pry him off of me, there were even times he would puke because he was so upset. He now takes some classes where I stay with him and if there is ever a new child he refuses to go into class or tries to hide under my arm during class. Many times he refuses to go anywhere if there are other children (birthday parties, classes). We have also had to move him in with his 2 y/o brother because he refuses to sleep alone.

 

Hot flashes: He is always saying he is too hot and trying to cool himself down. He stays naked most of the time at home even if it is freezing outside.

 

-Inattention: at times it seems he does not hear me, he cannot stay with one activity for more than a few minutes. Much of the time, he wanders around aimlessly.

 

-Obsessions and phobias: sometimes it is just asking me things over and over all day like, “What time is it?” or "Can we build a real rollercoaster?". Also, he can fixate on certain things like right now it is rollercoasters, it is all he wants to talk and he says he cannot stop thinking about it. One time it was watercolor painting and he woke up in the middle of the night and was begging to watercolor. He stayed awake until morning and I allowed him to watercolor. Sometimes he is easy-going, other times he needs his chair on exactly the right tiles to be able to sit or needs this car seat straps in perfectly flat on his body or he FLIPS OUT (screaming, crying, saying he hates everything). Today he refused to leave the house because he was worried his pants would fall down and show his private parts (it was totally irrational because his pants were not in any danger of falling).

 

-Dilated pupils: people have mentioned to me a few times how dilated his pupils are. I never thought much of it until the other night he was ticcing a lot and had very dilated pupils. He had a kind of wild look in his eyes and he started saying he couldn’t breathe. He calmed down pretty quickly, but I keep noticing his dilated pupils.

 

-Horrible body odor: he has had this since 3.5. We have had all the endocrine tests associated with premature body odor and all were normal.

 

-Teeth grinding: he grinds his teeth all night it is so loud I can hear it down the hall.

 

-Impetigo?: He started getting these bumps that looked like boils on his thighs when he was about 3. His pediatrician prescribed Mupirocin ointment and said it was probably staph. He still gets them every once and a while. He got 2 at the beginning of this ticcing last episode.

 

He has never had strep that we know of. He has had several extremely high fevers (104-105) one with a rash. The high fevers only lasted about a day and he never went on antibiotics. The first time he was on antibiotics was back in December for a cough that lasted for about a month.

 

I give him vitamins and supplements: CALM, Essential Oils, probiotics, multivitamin, S boulardii. We try to keep him on a very healthy diet with low sugar and mostly organic, whole foods. He does watch what I consider to be too much TV and plays video games (about 2.5 hours a day total, some days it is more). I allow it because it is all I can do to keep myself from going insane (if he is not doing this he is following me EVERYWHERE). I have cut out "screens" like TV and computers before but it did not seem to help with the tics.

 

I would be sooo grateful for any input. Does this sound like PANDAS? What should I say to the doctor? I am trying to get the Cunningham test, but have not gotten any response to my email. Are there any other tests I should ask for?

 

-Lindsey

[SarahJane]

If it helps, I don't think you sound crazy. You have some very real concerns & many things on this list are PANDAS symptoms (separation anxiety, OCD, tics, sensory, dilated pupils,attention issues...). Hopefully, the dr you are seeing tomorrow will be well-versed enough to recognize & help if it is PANDAS. As far as tests: reg strep test (swab AND culture). You'll want to check the strep titers (ASO, Anti dNASE ...this can catch if there has been a strep infection if swab/culture negative. The cough could have been mycoplasma pneumonia/walking pneumonia, so that'd be worth checking if you can get it. Others may also say Lyme since that can be a neuropsychiatric culprit, so maybe consider that if you think it's a possibility. Not sure about the Cunningham test. We didn't do it for our dx back in Oct (did IVIg in Nov).

 

I know what you mean about wondering what in the world is going on & then thinking you are crazy when it goes away. When our ds(7) was a toddler, we'd go thru phases of panic followed by thinking we'd imagined the stuff. The fact that the symptoms would clear kept me baffled and from letting our ped push any other dx's. Got to where we just thought they were growth spurts...until he had one that didn't go away last spring after a dx'd strep infection, which was his first major exacerbation after 1.5 years of hardly anything. The other things were likely less intense exacerbations, and when I went thru the medical records, I saw where they typically coincided with an illness (hindsight is 20/20). The 2nd strep infection in the fall caused a doozy of an exacerbation that led to us getting dx'd & IVIg. He's still healing but much better than he was

 

The good thing is that you found PANDAS now. You are very likely on the right track. Good luck!

[peglem]

-Impetigo?: He started getting these bumps that looked like boils on his thighs when he was about 3. His pediatrician prescribed Mupirocin ointment and said it was probably staph. He still gets them every once and a while. He got 2 at the beginning of this ticcing last episode.

That does sound like staph, but if he gets them from time to time, I'd wonder if he's ever actually gotten rid of that original infection...maybe get some immune testing done.

 

A lot of what you describe about your son could be symptoms of PANDAS or neurological that could be related to some kind of infectious agent. Glad you're on the trail- hope this doc helps you get it all figured out!

[kimballot]

Lindsey - Welcome to the forum. I don't think you're crazy. I think it is good you are checking this out with a doctor that specializes in PANDAS. If you've been reading this forum you know that once a child has PANDAS, ANY infection or inflammation can lead to an exacerbation. However, kids with tourette also have waxing and waning of symptoms.

 

You mention the rash at the start of a couple of tic exacerbations - has your son ever had any colds or flu at the start of exacerbations? Has your son ever been put on antibiotics for any reason, and did you notice a change in tic levels on the antibiotics?

 

You might want to get a copy of his medical records and go through them to refresh your memory.

 

Best wishes on your journey - and please keep us posted!

[LNN]

Welcome Lindsay,

I'm sure by now you are well-versed in Pandas and have read the helpful threads pinned at the top of the forum. I'm sure you've also read about tick-borne bacteria on the forum and how some have found that lyme and Pandas can look an awful lot alike. I think it's worth pursuing these diagnoses, since the waxing/waning point to this being infection-based.

 

A few things in your post made me think of lyme - the hot flashes, the broken blood vessels in the eye (it may not be a result of the tics but rather a lyme manifestation) and the rashes (which could be impetigo or could be some bacterial toxin). I don't want to discourage you from pursuing Pandas. But you may also want to read up on lyme in addition. The two diseases can be very similar but with lyme, you usually get a much better response from using a combination of antibiotics rather than just one.

 

Best of luck with your doctor's appointment!

[butterflymom]

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Edited February 3, 2016 by butterflymom

[Dedee]

My suggestion is to get rid of any doctor who discourages you from persuing this. You are his mother and you should always follow your instinct. You know your child better than anyone and you are NOT crazy. Do not stop until you find someone who will help your son. He is young and he deserves a better life. Thank goodness he has you to fight for him and not take no for an answer. We have all been where you are and many have been to several doctors before finding the one who can see what you see. I am sure that if you stick around this board you will find the information and support you need to get your son on the path to healing. Good luck and keep us posted.

 

Dedee

[nicklemama]

Looks like many PANDAS symptoms to me. My son had many of those. I would not be detered from looking at PANDAS. If I had not pushed on and let the naysayers have their way, my son would be in a terrible way right now. My son's psychiatrist actually told me, at the last med check appt, that he commended me for my diligence and commitment to keep looking for answers. He's the one doctor my son has, aside from Dr Trifiletti, that is fully on board w/ PANDAS.

 

I would not accept any thing less than a full evaluation for PANDAS.

 

My son has never had a diagnosed case of strep. Of course, he was never tested for strep when sick either. He has had ear infections and each time, he had behavioral changes (and recovered) until fall 2009 when everything hit the fan.

[sf_mom]

Welcome. I am the one who posted Dr. Fredrick Lloyd's information. He is our Pediatrician. You will find him very compassionate, willing to listen, can run a bunch of preliminary tests for you and would most likely prescribe a single use antibiotics. He is familiar with PANDAS and willing to help but limited. He is a good first step.

 

You are obviously local and many have already recommended investigating for chronic infection further. I too would make the same recommendation. Many of us in the Bay Area are now seeing LLMDs. We are fortunate to live in area that has two of the most respected Dr.'s in the country. One is located in Redwood City and the other is in SF proper. Both will run extensive tests over time that include testing for immune complexes, IgG subclasses, CBC, viral panels, mycoplasma, parasite testing, Lyme, co-infections, gut issues, etc. They will look at the larger picture and why there is immune disfunction. They are very familiar with PANDAS and chronic infections... and know how to treat.

 

I will PM you there information.

 

-Wendy

[Lulaja]

Thank you all so much. I now seem to remember he was finishing a cold at the beginning of this episode. Also, I never thought about Lyme, but my mom has chronic Lyme (had it and was suffering horribly for 10 years before she was diagnosed!). I should probably get him tested for that also. My mom has urged me to get tested myself because I have some symptoms, but I am terrified if it is positive. I imagine children can get congenital Lyme?

 

Wendy, thank you so much for the information. I was hoping you would respond because I could not remember where I found Dr. Lloyd's info! Thank you so much for the information. I think I would be lost without it. Looking forward to your PM.

 

-Lindsey

[sf_mom]

PM has been sent. Check upper right hand corner for your messages. If you have symptoms (I did... Fibromyalgia) this could very well be congenital Lyme for your child.

 

-Wendy

[mama2alex]

Welcome to the forum! I agree with others that its best to check into any and all possible chronic infections, not just strep. We too saw Dr. Lloyd a couple of times and he is a very understanding, open-minded and thoughtful doctor. He didn't know a lot about PANDAS when we saw him 1 1/2 years ago, but he may have learned more since, and he was willing to prescribe the antibiotics I requested. I gave him a copy of "Saving Sammy," but not sure if he read it. I think he'd be a good pediatrician for you, since he is aware of and believes in PANDAS. But I don't think he's the doctor who can get to the bottom of your son's issues.

 

My son since tested positive for Bartonella and I too have had some symptoms of Lyme/co-infections over the years, so we are now working with the Lyme doc in Redwood City. I'm sure SF mom has already given you his info. I would highly recommend them. My ds10 is doing MUCH better since we started working with them last Fall.

 

I also recently found a neurologist, also in RWC, who is aware of PANDAS. She doesn't have any idea how to test or treat these kids, but if you need a neurologist for something like seizures, etc, she'd be a good choice as she's seen kids with PANDAS/infection-triggered neurological issues before. You can PM me if you need her name.

 

Let us know how it goes with Dr. Lloyd.

[SSS]

Hi. Of course, you've gotten excellent, excellent comments here from all these smart ladies.

Just a tidbit-

My dd5, when she was 3, got a dx from an Occupational Therapist for Sensory Processing Disorder. We did 10 months of weekly OT in her office, and at home, I did the 'brushing therapy/joint compresion' every 2 hours on her for months to try and fix her 'tactial issues' around clothing.

I could write PAGES on her issues with clothing.

What I had always put down to as sensory with clothes, was in fact, Obsessive Complusive Disorder.

Same shirt for weeks, only certain colors, only ss shirts, suddenly 3 long sleeve shirts layered, on and on, was OCD- resulting in a complete nervous breakdown if she couldn't get her clothing 'right.' Unable to function without her clothes 'as she needed them to be.'

HAS to wear this. HAS TO.

Just a thought- took me a long time to figure that out.