Sudden Onset

[Lisa Kraft]

Hello –

 

Thanks for allowing me to post on this forum. My 4-year old just started complex motor tics on/around January 5, 2007. From then until now, he has increasingly gotten wore. His tics include head turning, blowing, saying one word over and over again, and arm thrusts. It happens almost every minute. There are a few rare moments of the day when he is at rest and he doesn’t have tics for about 10-15 minutes at a time.

 

We have an appt. Feb. 8 with a pediatric neurologist. Please help me know what questions to ask.

 

The part I am having the most difficult time with is it has seemed to happen ‘overnight’. We traveled out of town for Christmas and it started about a week after we returned home.

 

2 interesting factors:

1. Everyone at Christmas got sore throats and runny noses but he didn’t show signs of any illness.

2. He had 2 teeth filled on January 2nd.

 

Are these worth mentioning to the neurologist? Has anyone else had children where the TS came on suddenly?

 

Thanks,

Lisa

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Sounds like a classic case of PANDAS to me. My son also had a sudden overnight onset - took him to the doctor - he had strep - we did a swab and blood work. I would get into your ped and do a swab and shceck his ASO Titers right away - give them info on PANDAS incase they don't know and ask for antibiotics. When you can pinpoint the day the tics came - it is a clear indication of PANDAS. Other signs we saw were emotional lability, grumpiness, clothes not feeling right, lack of empathy, deterioration of hand writing, ADHD type behaviour. We DID NOT KNOW he had strep - no symptoms - he also never got normal symptoms - everyone else in the family would have the stomach flu, or a bad cold etc and he would have tics.

 

Start reading about PANDAS - Ronna has posted a lot of good info about it - also check the NIMH site for PANDAS info - just google "NIMH- PANDAS"

 

My son does not have TS - he has PANDAS. Symptoms are non existent now most of the time, he is on proplylactic azithromycin - and has been on antibiotics for a few years now. Transient tics are also common but what your are describing is a sudden and dramatic onset of simple and complex motor and vocal tics - exactly what my son had - 3 days on antibiotics they were 80% gone. I won't retell my whole story - it has been a long road but well worth the travel!

 

Good Luck - my advise is not to wait until February - the sooner he is seen the better - even just for the tests.

[Lisa Kraft]

Thank you so much for this! It encourages my heart very much. I am a bit concerned that everyone else in the family got sick on December 26 and Sam (my son) seemed a bit pale and tired a few days after that. so maybe we've already waited too long. But this is awesome info for me.

 

I would love to hear from anyone else who had the same experience.

 

Thanks,

Lisa

[Lisa Kraft]

Oh, one more question please. Did you just do one run of antibiotics (e.g. 10 days) and then the tics stayed gone? Or does yoru child have to be on antibiotics every day for a long period of time?

 

Thanks,

Lisa

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Hi Lisa,

 

I wish it had been that simple. After the first 10 days on antibiotics, he was probably 95% better, within a few days to a week off antibiotics the tics came back - so we did another round ( I begged - as now the strep swab was negative) again same thing, then another round - we ended up staying on full dose antibiotics for about 4 months until we saw the ID (infectious disease) clinic - who agreed to prophylactic antibiotics - we did still have lots of ups and downs but we never saw the intense level we saw with the first onset. PANDAS and PITANDS - seem to go hand in hand - PANDAS - ped. auto-immune, neuro-psychiatric disorder assoc. with strep and PITANDS - Ped. Illness triggered auto-immune disorder. So - what I started to notice is my sons tics increased when those around him were sick - he would never get a runny nose, or feel sick, but tics would increase - I started to take that as a sign he was fighting something so I would keep him home from school, luckily he was in grade one at the time, and was very bright, so even with all the missed school he did fine.

From what I have learned, these kids often have an already weak immune system - my son had chronic ear/throat infections from 6months to 2 years - then he had ENT surgery - then was never sick at all - I think in reality he was just not the way a normal kid exhibits symptoms, he was a handful - challenging to parent at times, almost becoming a behavioural kid at school (not the case at all anymore - he is a model student, lots of friends, does well in school no behaviour issues).

Anyway....not sure where I am going on this - ultimately we found many triggers - a big one for him was the tv and flicker of flourescent lights - the tv was obvious to me, he would tic when watching it, look away and be fine - when I found this site and Claires threads on going screen free we tried and saw a big improvement ( I had never even considered removing this trigger - no tv - who would do something so crazy! Well, thank goodness we tried it - and it wasn't so bad after all.) now my son can watch and LCD tv without a problem, we did a CRT (regular tv) test in December and he did get eye tics from it - they did not last long but this is still a trigger.

We worked with a naturopath and did food allergy testing too - found he was allergic to foods he loved and we were shocked - removed them just for fun (I was skeptical but desperate) and again we saw an improvement) My thoughts are that my sons immune system is like a bucket - and while he can sometimes manage some of the things attacking it and filling the bucket, when he is also fighting a viral illness than the dairy or other allergen can be the thing that causes his bucket to spill over and the tics to emerge.

We have been at this for 2.5 years now - and at no time have we used any drugs - other than antibiotics. He has led a pretty normal life during that time - missed school more than others. This has been the best year so far - if I knew then what i know now I would ask for azith. from the beginning. 2.5 years ago there was less info on PANDAS, the research was just beginning so I was getting most of my info from other moms who posted on PANDAS forums. I was so thankful for the internet as I am convinced if it were not for this site - my son would have been on drugs for the neurologist ( which I would have been asking for) that would deal with the symptoms and not the root cause - his immune system. We have also worked hard at building his immune system, with healthy foods and vitamins. He is now only on a multi - and the azith. The last few weeks his tic increased as there was the stomach flu and another viral illness in the house, we let it ride for a few weeks, tics were there but minimal, they started to increase with a vocal sound and since school was starting up again we then decided to increase the azith for a few days to see if it would settle down the tics, within 5 days he was 90% better.

With PANDAS it seems some antibiotics work better for some kids than others, so even if you find one not working - beg to try another. So far - I think anyone who has tried the azith has had good results, again I think the immuno modulating properties is what makes the difference with this drug. Remember if you start antibiotics to also have him take probiotics.

Again - I am afraid there is often not a magic pill (although the azith sure feels like one at my house)

 

Good Luck, please keep us posted.

 

PS - I posted a lot when I first arrived here - if you look up threads started by me you will find my earliest one was New Here - there is probably a lot of info you might find helpful in there.

 

Just realized I had not answered all of your question - wow do I ramble. We were on amoxycillin for about 2 years - then went off it in the summer with hopes of him doing ok on nothing, he deteriorated with a few days and ended up with a loud vocal tic every second, we went back on amox and it was no longer making any difference, we tried about 3-4 other antibiotics alone and in combination with each other, at the end of the summer I learned about the azith research at NIMH - took in the report and begged my doctor to try it as a last ditch effort, then if that failed I would have looked at other meds as he was not able to attend school in the state he was in. Within a day he started to get better and by the end of the 10 days he was tic free. He has remained very stable since starting azith - and now he gets it once every 5 days - I have NO plans on stopping unless it stops working, with hope once we get through puberty his immune system will be reacting in a different way - also with rheumatic fever patients they stayed on until 18 - The ID clinic had given the go ahead until he was 18 as per rheumatic fever protocol.

[Lisa Kraft]

Thank you so much for replying. Honestly, I'm not surprised about the journey you've had. I'm a tiny bit desheartened because I spent the whole year of 2006 trying to get my own medications stabilized. I have Hashimoto's disease (hypothyroidism) and all my thryoid tests were 'normal'. It took a lot of begging until they finally tested for antibodies (they were sky high) and then once it was confirmed I also pleaded to experiment with different combos of drugs, etc. Needless to say, I am better than when I first started on my journey but still nowhere near being symptom free.

 

All that to say, my family doctor already thinks I'm obsessive and now my son's circumstances sound similar. We have NO HISTORY of Tourette's in our family. However, we have history of autoimmune diseases.

 

I went to the walk-in clinic yesterday and had Sam tested for strep. The 1-hour culture came back negative and i won't be suprised if the 24-hour culture is negative also. They would not take any antibody tests - go figure! He had absolutely no symptoms except - swollen lymph glands. The ped did admit that points to some sort of infection even though he doesn't seem sick. It's interesting, because that is one of the symptoms with my thyroid problems - swollen lymph glands.

 

Now I'm the one doing the rambling. I'm trying to pull up my boot straps and get ready for another round of trying to sweet talk doctors and research info, etc. Thank you for sharing with me. I guess I have a little better idea as to what to do next.

 

All this to say, my mommy gut feeling says that this is an autoimmune thing for Sam. It all adds up. Thanks for listening!

 

P.S. I guess I'm also fretting a bit about being the 'inspiration' for my little guy when I myself am still feeling tired and frumpy all the time because of fatigue. Maybe I idealize too much what a mommy can/should be for her kids. I do love him, that's for sure!

[Chemar]

Lisa

altho I anot a PANDAS expert as my own son has genetic TS and not PANDAS, yet from everything you describe, this sounds like PANDAS to me!

 

there are doctors out there who know about PANDAS and who know that regular strep cultures may be negative when the strep antibodies in the blood are sky high!

 

I have just recommended to another mom (Dedee) that she contact Dr Tanya Murphy at the UNiversity of Central Florida Shands Clinic who is at the forefront of PANDAS research and ask them for a referral to a PANDAS doc in your area 1.800.749.7424

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Funny you mention the thyroid problems - my mother had the same thing - I think hypo - whichever one makes you really tired - it took a long time for hers to get back in check - also, my aunt (mother's sister) had rheumatic fever - which seems to be linked to PANDAS - we also think looking back my brother had PANDAS - not as severe - he did some blinking for a couple of years and had other symptoms of PANDAS - as well as ongoing infections as a child - and the swollen lymph gland on his neck most of his younger years. My son also had swollen lymph glands - on one side of his neck from about 2 years of age - it was ALWAYS enlarges, where you could see it even when he was not turning his neck- the lump is now down - and coincidentally seemed to decrease when we started the probiotics full force - not sure the connection.

I know how tired you must be - even if you didn't have your own medical condition this is so wearing on us moms. Do try and take care of yourself as well - I didn't and payed for it eventually - I was not sleeping, I was just researching every minute I had - eventually I was not able to sleep - I also lived with a chronic migraine - so they called it - for about 6 months before I addressed it - I was taking at least 8 advil a day and had no relief, eventually one day I started throwing up from my headache - then got on some migraine medicine, I could not believe how much better I left not having a headache- - I went to see the naturopath myself, got off the meds for the headaches and did some more natural stuff. I also had a 6 month old baby at the time and a three year old, I look back and wonder how I functioned - the strength comes from somewhere that is for sure.

 

Good Luck again. I would beg for the blood work - it is just one needle, and the results may help your case if the numbers are really high. Also - take the suggestions of others and get connected to a doctor who knows about PANDAS - it will make your job so much easier when you are not trying to convince someone about the condition itself.

[Lisa Kraft]

Oh, thank you everyone for the info! I'm almost in tears as I feel the support and encouragement! My little boy will be okay - I am trusting the Lord for this.

 

I admire each of you for your strength and tenacity in caring for your little ones! Your life experiences encourage me to 'fight the good fight' and not give up.

 

Blessings,

Lisa