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Is this PANDAS and narcolepsy?


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Hi

 

We are UK based and have been trying to get to bottom of DS7's excessive tiredness and mood swings.

 

Quick run down of symptoms:

 

Feb 11:sore throat and Impetigo (no throat swab done but suspect retrospectively may have been strep throat)

April- onwards: increasing signs of separation anxiety, mood swings, general melancholy, possible mild OCD eg wanting to collect 'rubbish' when out and never wanting to part with anything, very defiant. We put this down to 'a phase'. Developed staph infection on bottom that didn't clear with antibiotics

Aug 11 frequent urination, toilet accident first time since toddler. Waking every night to come into our bed - again not done so since toddler

Sept 11 worsening mood swings, defiance intolerant of siblings, extreme tiredness kicked in, falling asleep after school every day

Oct 11 above symptoms ongoing, frequent bedwetting, school reports frequent toilet trips. See ped re tiredness. Conclude post viral fatigue. Bloods all 'clear'

Nov 11 all symptoms on going. Start to notice 'odd' facial weakness/grimace, worsening moods, disrupted sleep. Still conclude post viral fatigue

Dec 11 no improvements. Notice 'tutting' of tongue intermittently. Will be very noticeable for a day or so then disappear completely. Ped now thinks I am neurotic but orders MRI,EEG to reassure, along with appt to see neurologist

Jan12 MRI, EEG all clear. Neuro suspects narcolepsy and orders sleep studies. Meanwhile discover elevated strep titers were missed in blood test in Nov (ASOT level 400)

Bloods redone to review ASO trend.

Feb 12 strep level still elevated. Prescribed Pen V. Sleep MSLT tests positive for narcolepsy but that alone cannot be conclusive so further bloods order and referral to ped narcolepsy specialist.

3-4 days into abx, still suffering extreme tiredness but sleeping in own bed 11 hours every night and moods swings improved massively. I have my happy, light hearted boy back.

Going well for 10 days, sleep starts to break up again and feeling 'an edge' to his mood again.

 

Follow up with neuro but I feel she has closed the file and concluded narcolepsy and wants to prescribe Ritalin. I feel she has ignored any improvement we saw on abx and has dusmissed this as possible treatment plan. Strep anti bodies are still at same levels from Nov but she has no plans to deal with this, saying that is possibly been the trigger for narcolepsy.

 

I know narcolepsy is not what this board is all about but feel like I'm hitting my head off a brick wall. Narcolepsy may be our ultimate diagnosis but I can't ignore the improvement we saw on antibiotics. Thankfully we do not have severe OCD or tics but I know DS's behaviour has changed massively since Feb last year but I only started documenting it all when the severe tiredness kicked in. I initially put all his behaviour down to phase.hormones and more recently his tiredness.

 

I want to push for another stronger course of abx instead of straight off going down a lifelong path of Ritalin.

 

Sorry for the length of this post and I am sure I've still missed off loads of details.

 

Any advice or comments would be greatly appreciated.

 

Thanks

 

London mum

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Hi

 

We are UK based and have been trying to get to bottom of DS7's excessive tiredness and mood swings.

 

Quick run down of symptoms:

 

Feb 11:sore throat and Impetigo (no throat swab done but suspect retrospectively may have been strep throat)

April- onwards: increasing signs of separation anxiety, mood swings, general melancholy, possible mild OCD eg wanting to collect 'rubbish' when out and never wanting to part with anything, very defiant. We put this down to 'a phase'. Developed staph infection on bottom that didn't clear with antibiotics

Aug 11 frequent urination, toilet accident first time since toddler. Waking every night to come into our bed - again not done so since toddler

Sept 11 worsening mood swings, defiance intolerant of siblings, extreme tiredness kicked in, falling asleep after school every day

Oct 11 above symptoms ongoing, frequent bedwetting, school reports frequent toilet trips. See ped re tiredness. Conclude post viral fatigue. Bloods all 'clear'

Nov 11 all symptoms on going. Start to notice 'odd' facial weakness/grimace, worsening moods, disrupted sleep. Still conclude post viral fatigue

Dec 11 no improvements. Notice 'tutting' of tongue intermittently. Will be very noticeable for a day or so then disappear completely. Ped now thinks I am neurotic but orders MRI,EEG to reassure, along with appt to see neurologist

Jan12 MRI, EEG all clear. Neuro suspects narcolepsy and orders sleep studies. Meanwhile discover elevated strep titers were missed in blood test in Nov (ASOT level 400)

Bloods redone to review ASO trend.

Feb 12 strep level still elevated. Prescribed Pen V. Sleep MSLT tests positive for narcolepsy but that alone cannot be conclusive so further bloods order and referral to ped narcolepsy specialist.

3-4 days into abx, still suffering extreme tiredness but sleeping in own bed 11 hours every night and moods swings improved massively. I have my happy, light hearted boy back.

Going well for 10 days, sleep starts to break up again and feeling 'an edge' to his mood again.

 

Follow up with neuro but I feel she has closed the file and concluded narcolepsy and wants to prescribe Ritalin. I feel she has ignored any improvement we saw on abx and has dusmissed this as possible treatment plan. Strep anti bodies are still at same levels from Nov but she has no plans to deal with this, saying that is possibly been the trigger for narcolepsy.

 

I know narcolepsy is not what this board is all about but feel like I'm hitting my head off a brick wall. Narcolepsy may be our ultimate diagnosis but I can't ignore the improvement we saw on antibiotics. Thankfully we do not have severe OCD or tics but I know DS's behaviour has changed massively since Feb last year but I only started documenting it all when the severe tiredness kicked in. I initially put all his behaviour down to phase.hormones and more recently his tiredness.

 

I want to push for another stronger course of abx instead of straight off going down a lifelong path of Ritalin.

 

Sorry for the length of this post and I am sure I've still missed off loads of details.

 

Any advice or comments would be greatly appreciated.

 

Thanks

 

London mum

 

There was a teen http://www.latitudes.org/forums/index.php?showuser=5253 that used to post here...she also had fatigue and (if I remember correctly) narcolepsy. She had PANDAS, but it also turned out she had Lyme (some kids have both). So, that is something I would add on to your list of possiilities...Lyme.

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Hi, and welcome!

 

There's actually a link between strep antibodies and narcolepsy, too! So it's possible your son is suffering both PANDAS and narcoleptic behaviors as a result, and the antibiotics are helping "correct" the antibody rage. Here's a link to papers on the topic.

 

Narcolepsy & Strep

 

More Narcolepsy & Strep

 

And here's a link to a full PDF version of the first paper by Aran:

 

Elevated Strep Antibodies in Narcolepsy

 

Good luck!

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Hi - we're from the UK originally, now in US. I don't know if this info is current or of any use but we were given this guy's name as somewhere to go in the UK if we were ever to move back. He's at Bart's in London.

 

http://www.bartsandthelondon.nhs.uk/our-services/centre-for-neurosciences/meet-the-team/consultant-neurologists/show/professor-gavin-giovannoni/

 

He also has a blog and facebook, I believe. Doubt he's treating but maybe could direct you to other PANDAS savvy drs.

 

Good luck...

Edited by dut
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Hi, and welcome!

 

There's actually a link between strep antibodies and narcolepsy, too! So it's possible your son is suffering both PANDAS and narcoleptic behaviors as a result, and the antibiotics are helping "correct" the antibody rage. Here's a link to papers on the topic.

 

Narcolepsy & Strep

 

More Narcolepsy & Strep

 

And here's a link to a full PDF version of the first paper by Aran:

 

Elevated Strep Antibodies in Narcolepsy

 

Good luck!

 

 

London,

 

Nanacy beat me to the punch...however, I agree, there is great research and evidence to support there is strong correlation between Strep and development of narcolepsy. I have an entire file folder of related research. My son went through similar symptoms last Spring. You should be able to Pubmed topic and get supporting evidence. Nancy has linked you to several- I probably have many of those she listed. I'm not sure Ritalin would be the greatest choice to treat symptoms of Narcolepsy. If PANDAS- will likely make your child very ticcish and/or increase OCD behavior??

 

I, too, would push for longer course of antibiotics and see what happens. My son took 90 days of Azithromycin and was much improved although sleep studies were inconclusive for narcolepsy. Take some of this research back to Neuro to plead your case. Good luck! A constantly tired, irritable child is not normal and difficult to deal with- I know- have been there! Good luck!

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Thank you so much for your replies. The information shared on this website is amazing.

 

A big problem we have in the UK is , from my experience anyway, that there isn't a huge out there about PANDAS.

 

I hadn't heard of it and happened to stumble across it on here when searching for answers of what was going on with DS, when the best my ped could offer was 'non specific post viral' .

Apart from the extreme tiredness, many of the things I've read on here have been SO close to what we've been going through. For us, as I say tics and OCD have not been severe and any skeptic would I'm sure write them off as me being neurotic, but so much else has been like a light bulb moment.

 

I've since discovered our neuro has been flatly WRONG about some of her facts ie a blood test she claimed to be 100% conclusive of narco is also present in 30% of population, and Ritalin should not be first choice drug.

 

Thank goodness for the Internet and all the fab information you're able and willing to share.I'm midway thru trawling thru the 200 odd pages of postings to arm myself with as much info as possible to fight DS case and make sure he gets the right treatment for the right diagnosis. So thank you all again for answering not just my question but all those that have gone before me as well.

 

L x

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Hi ! My story is a long one as well....very long... 2.5 yrs long.

 

My son has basically lost his ability to sleep. He keeps his eyes open, wake up at 2-3am and could tic for hours! We are still on the middle of testing and waiting for all results. I know this, my son had two days without tics on omnicef, and because I pushed heis on 21 days of zithromax. He screams for me at night, afraid of something, hallucinations, tics all night.

 

Our doctor knows we are going insane trying to help our son ... My son saw a sleep specialist and a neurologist last year and the neurologist was awful !!

 

It sounds like you are documenting all of this , way to go !! Something is to be said when a child gojng thru all of this responds well to antibiotics !

 

When i read the list of symptoms of pandas it hit me like a ton of bricks, that list is my son , meaning every single symptom he experiences daily !

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Hi London,

I am not sure if this is an option, but I do think that Dr. K. (a leading pandas specialist here in Chicago) periodically travels to Europe to treat kids there. The day after we saw him, he was heading to Italy to treat 16 kids there. Just a thought as I know it must be tough in your situation.

Wishing you the best!

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Maybe this is just my ignorance of narcolepsy, but what I read in your post is extreme fatigue, but I don't see symptoms of falling asleep suddenly, like a light switch, or sleep paralysis. Is it possible the extreme fatigue is being caused by viral - e.g. epstein-barr, mononucleosis, etc - infection? Or possibly an underlying viral infection that's then being exacerbated by intermittent bacterial infections like strep? In other words, could it be a chronic virus plus Pandas?

 

Have you tested for EBV (epstein-barr) CMV (ctyomeglovirus) and the herpes family of viruses (HHV's)? A non-believing doctor will tell you that 50% of kids will test positive for these infections and 95% of the adult population showing previous exposure. Most people don't even know they've had it - it feels like the flu and 2 weeks later, you're better. But some people can't seem to shake it and the fatigue gets worse and worse. You can also look into Stephen Fry and FL1953 - a virus he feels plays a role in chronic fatigue. Here's an interview: http://www.mdjunction.com/forums/lyme-disease-support-forums/studies-research/3337189-drfrye-interview-bug-protozoal-infection-112011

 

I'm not trying to dissuade you from Pandas at all. But if there's a viral component, then treatment would be different, or at least have an anti-viral piece. My DD7 was sidelined by epstein-barr for 4 months. She ended up unable to attend school for more than 4 hrs. and would then come home and lay on the couch, exhausted. We tried a few different things but ultimately what helped was l-lysine, an amino acid found in legumes but can also be found in health food stores in the U.S. Within days, we saw dramatic improvement. The only down side is that l-lysine can lower seratonin levels and increase anxiety. So we had to also add tryptophan to keep her from getting moody and depressed. But for her, it gave her her life back. She is now back in school full time, a month after starting treatment. Might be worth tackling this from multiple angles.

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Maybe this is just my ignorance of narcolepsy, but what I read in your post is extreme fatigue, but I don't see symptoms of falling asleep suddenly, like a light switch, or sleep paralysis. Is it possible the extreme fatigue is being caused by viral - e.g. epstein-barr, mononucleosis, etc - infection? Or possibly an underlying viral infection that's then being exacerbated by intermittent bacterial infections like strep? In other words, could it be a chronic virus plus Pandas?

 

 

Actually, if you do a little digging into some of the support forum posts, etc. among those suffering from narcolepsy, you'll find that true narcolepsy is frequently expressed as an intense "compulsion" to rest, sleep; the person is generally aware of the desire for sleep taking them over, and it is rarely like an instantaneous switch. That "switch," like the one you see on videos with certain species of goats and narcoleptic dogs, especially, is actually known as cataplexy, an extreme and advanced form of narcolepsy.

 

I had originally thought the same as you before I found that paper on narcolepsy and strep and saw some parallels in my DS's behavior at the time. At the time, he was expressing extreme tiredness and sleepiness, especially in classes at school that called upon him to implement strong recall and organizational skills. Sometimes he would even lay his head down on the desk and take a catnap, right there in class. At the time, I chalked it up to him "checking out" because he was feeling overwhelmed and anxious, a part of him just taking over and calling for sleep as a defense mechanism. Once having found this link, though, I started to consider that all this behavior was linked to the PANDAS.

 

Not that that discredits your points about additional underlying infection, etc. Just as PANDAS/PANS/PITANDS can have multiple underlying nasties, it seems entirely possible that narcoleptic behaviors could, as well.

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Early on when we were trying to work out what was happening with DS I actually asked two different doctors if this could be narcolepsy. Both said no because even their understanding of narcolepsy was that he would suddenly have sleep attacks. I've since discovered that in the early stages, narcolepsy can present itself as excessive daytime tiredness, not necessarily falling asleep uncontrollably.

 

His positive MSLT sleep test showed that his sleep cycles are all messed up and not only is he extremely tired but he also went into REM sleep very quickly ie within a few minutes, while this should normally happen after about 1 to 2 hours. This is highly indicative of narcolepsy.

 

I don't want to be in denial over narcolepsy but his emotional and behavioural changes are SO like what I've read about in PANDAS. It seems that sleep cycles in most PANDAS kids are pretty messed up as well, perhaps just in a different way in that they struggle to get to sleep. I am curious how many of them would also have narcolepsy-like sleep cycles if they were to be tested ie going into wrong sleep phases at the wrong times!

 

I am so worried that PANDAS is totally dismissed and the cause of his behavioural changes is all put down to tiredness and never actually properly addressed, and we instead end up purely on a lifetime path of stimulants.

 

It is so difficult when you feel the docs have made their diagnosis and closed their file.

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Hi,

Finding a dr who will take you seriously really helps. I'm in Australia and the drs here who get PANDAS etc are the DAN! drs (Defeat Autism Now! You don't have to have a child on the spectrum to see a DAN! dr) - I'm thinking it's likely to be the same in the UK. There used to be a DAN practitioners list (including drs in the UK) on the ARI website (Autism Research Institute) but it was recently taken down. It might be worth contacting ARI directly. Otherwise try Googling for a DAN! dr in the UK, though it would help to be able to get a personal recommendation from someone...so maybe consider contacting your local Autism community and asking around if anyone knows a good Biomed/DAN! dr. (Don't be put off - not everyone will be convinced of the worth of a good DAN dr! Ours is a treasure!) Another thought - maybe contact Dr K and see if he's got a contact in London. Otherwise you could try convincing your dr to do a phone consult with one of the 4 PANDAS drs in the USA. In that case I'd be taking a copy of the white paper by Swedo et al (see PANDAS NETWORK) and whatever else you think would help you make your case to your dr.

Good luck!

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