POSSIBLE PANDAS?

[CARMON]

WELL UNFORTUNATLEY I'M BACK. BRIEF HISTORY: MY SON HAD BLINKING TIC FOR 3 MONTHS THE SUMMER OF 2003, HE WAS 3. THE BLINKING TIC RETURNED SUMMER OF 2004 SHORTLY FOLLOWED BY A VOCAL TIC AND SHOULDER SHRUG, NECK STRETCH. THIS WENT AWAY AFTER APPROX. 3 MONTHS, RIGHT AFTER MY YOUNGER SON WAS DIAGNOSED WITH DIABETES. I SWORE IT WAS DIVINE INTERVENTION. HE HAD STREP THROAT AND WE FINISHED ANTIBIOTICS (OMNICEF) ON SAT 1/21 AND LITERALLY ON 1/22 MY SON WOKE UP A DIFFERENT KID. HE HAS A VOCAL TIC (DOG-LIKE WHIMPER), BLOWS PUFFS OF AIR OUT HIS NOSE AND IS VERY ANTSY. HE IS NORMALLY VERY CALM. I HAVE SPOKEN WITH HIS TEACHERS AT SCHOOL AND THEY SAY HE IS STILL PERFORMING WELL IN SCHOOL BUT SEVERAL HAVE NOTICED THE "NOISES". I ASKED THEM NOT TO CALL ATTENTION TO HIM AND TO LET ME KNOW IF ANYTHING CHANGES OR IF THE "NOISES" START TO DISRUPT CLASS. WE HAVE AN APPOINTMENT WITH A PED NEUROLOGIST ON 3/1...I CAN'T WAIT!! FOR SOME REASON, THE DR GAVE HIM ONE REFILL ON HIS ANTIBIOTIC; SO I GOT IT REFILLED AND HAVE GIVEN IT TO HIM WITH LITTLE RESULTS. IT ISN'T CONSTANT BUT STILL QUITE SEVERE. HE SAYS HE FEELS AS IF HE HAS TO DO IT, SO I TOLD HIM TO GO AHEAD. I ALSO TOLD HIM TO TELL ME IF IT BOTHERS HIM AT ALL, BUT THANKFULLY HE SAYS IT DOESN'T. I HAVE ALSO NOTICE A PERSONALITY CHANGE IN HIM...HE IS IMPOSSIBLE TO REASON WITH. IS THERE ANYTHING I SHOULD DO FOR HIM UNTIL WE SEE THE NEURO? I DO FEEL LIKE IT IS DIRECTLY RELATED TO THE STREP THROAT INFECTION, BUT HE WASN'T SICK BEFORE THE FIRST 2 EPISODES (OTHER THAN YOUR REGULAR SEASONAL ALLERGIES). WHAT DO YOU ALL THINK?

[kim]

Carmon,

 

Maybe the first two times he did have strep, and not necessairly a sore throat. My kids have had strep and never even said their throat hurt. My feeling is that any infection or virus is very capable of bringing on a tic flair with the boys, although not always. I'm not very up on all of the PANDAS stuff, but I think the people who are, would tell you to get his strep titers tested. If you make copies of some of the research in that area and take it to the neurologist or your pediatrician, it might help. http://www.enzymestory.com/PANDAS.html

 

There are also some really excellent threads here with posts by Ronnas and Allison and others, that you would probably want to read, if you haven't already.

 

Please let us know how your appt. goes., and God bless your little one with diabetes too.

 

Kim

[Sunshine]

Carmon, I completely understand what you mean about your child waking up a different kid. I sympathize, and know the heartache associated with such distress. I am fairly new here, and a rookie at PANDAS, but my journey is beginning, as is yours. I will post about my son too, so perhaps you can learn from my experiences too.

 

My son is 5 1/2. He had a sudden onset of tics last year, preceeded by separation anxiety, clothing sensitivity and emotional lability. Details are on another post about vocal tics.

 

He tested positive for strep 3 weeks ago, and did a round of amoxycillin. He improved a lot (tics and behaviour), but worsened within 3 days of being off. The pediatrician is currently testing our family to see which of us are carriers. He will put any of us who test positive on Clymacidin (sp?) to erradicate strep in those of us who are carriers.

 

Questions:

 

- This is a strong antibiotic, and will be given with a probiotic. Ronnas, I think that your son was on it. Is it worth trying? Can a 3 week course be sufficient enough to erradicate at least some tics/behaviours permenantly?

 

- Will this be a lifelong problem for my son?

 

- How can I help my son long term? We have done no screens since Xmas. Likewise for preservatives, colours, flavours... He's on a multivitamin. Yet he has recently got worse (anxiety and new tics). I am scared of giving him too many vitamins without a doctor's advice. I can't find a doctor who will support these testimonials. They say, "It's contraversial..."

 

- Do any other PANDAS kids have shiners under their eyes? Pale skin? Stuffed nose?

 

- Does anyone know if Flonase (nasal spray for allergies) increases tics or hyperness (my son is not ADHD)?

 

Any help would be greatly appreciated.

[kim]

Sunshine,

 

 

My youngest son has had the classic shiners, since he was a toddler.

 

I started a digestive enzyme called No Fenol recently. I was using it to help with the yeast problem, as it is supposed to weaken the outer shell of yeast, along with Culturelle probiotic.

 

It's really to soon to say if it's related, but his dark circles are gone.

 

I'm wondering if it's not related to anything to do with yeast, but the phenol in his diet.

 

Here is some info.

 

http://www.danasview.net/phenol.htm

List of high phenol foods -from Dana's site-

 

Here is a short list of high phenol foods from Karen Seroussi's book, which you would want to eliminate or at least reduce to prevent overload, is food dyes, tomatoes, apples, peanuts, bananas, oranges, cocoa, red grapes, colored fruits, and milk.

******************************

 

Karen DeFelice is another moderator on the autism enzyme board. This is info on a book she wrote.

http://www.midwestbookreview.com/sbw/feb_05.htm#health

 

Enzymes For Digestive Health And Nutritional Wealth

Karen DeFelice

ThunderSnow Interactive

5720 Wentworth, Johnston, IA 50131

0972591869 $18.95 www.thundersnow.com

 

Digestive enzymes are essential for human and animal life. Digestive enzyme therapy is an important and newly emerging alternative approach to a number of human ailments including autism and such neurological conditions as PDD, sensory integration dysfunction, migraines, ADD, ADHD, food and chemical intolerance, chronic fatigue, fibromyalgia, autoimmune conditions, bowel dysfunctions, and "leaky gut" syndrome. Author Karen L. DeFelice recounts the compelling and informative story of a group of families that found health improvements through digestive enzyme technology to be incredibly successful.

******************************

More info on enzymes http://216.114.78.114/webcenter/sites/HNI/...36&N=No%20Fenol

 

 

Our Alternative Dr. told me not to use Nasonex because it was a steroid, on a continuous basis, and use xylitol nasal spray instead. I believe we have had flonase too, and neither flonase or nasonex caused any increase in tics, that I was aware of. Maybe try it for a short time and see if it helps?

 

Kim

[ad_ccl]

Carmon,

 

Sorry to hear what you are going through. My son also had a sudden overnight onset of severe symptoms including the personality change - I have posted a lot about our experience so you may want to read my posts. I highly recommend you have your son on probiotics along with the antibiotics. It is something I did not do for the first 4 months and wish I had knowing what I know now. You said your son was not sick before the first two episodes. He may have been sick but just not shown usual symptoms. My belief is the immune system is key - should be obvious since it is in the PANDAS name. But...it has taken me a long time to process this and try and understand the root cause of this - at the beginning I just prayed the antibiotics would work and make everything go away for good, but symptoms just kept returning. We have seen great improvement since treating the root causes - first trying to figure out what everyday foods and other triggers were making his immune system react. We were shocked to learn of his food allergies as he had none of the usual symptoms (hives, sore stomach) we also realized he was reacting to tv and florescent lights - we switched to an LCD tv and reduced exposure to the lights. He has been doing really well with a few minor blips in the road - always traced back to some kind of trigger - illness, lights, etc. In December past I again tried to look deeper into the root cause, and why he was having these food allergies - and yeast was key - he had tested high for it - and is still on antibiotics - we started to treat the yeast and he again has been doing even better - while he was doing well prior to december he would miss school a few mornings a week - as whenever he had minor symptoms, or was sleeping in - I would keep him home - feeling his immune system was working on something - and luckily he does well in school so missing some was not a big deal - since treating the yeast more aggressively he has missed maybe one half day of school, he has stayed for lunch pretty much ever day ( before I let him stay 2 days a week) he has not missed any hockey and has been having far less emotional lability.

 

Sunshine - from our experience, we have only used amoxycillin and biaxin - I find it interesting that your doctor is testing you all - ours never did this - and it does make sense.

 

I do not believe this will be a life long problem. I think if we get to the root cause of what is going on - that our kids will outgrow this - they probably will outgrow it either way - but reducing symptoms until they outgrow it makes life way better! As I have said, we think my brother had PANDAS - not as severe - and has no symptoms now - same as those with rheumatic fever which is linked to PANDAS - it was a childhood disorder. I think our kids are growing and changing so much - my fear all along was any permanent damage done to the basal ganglia - which is why whenever we had minor symptoms I would keep him home - but I have seen my son be 100% tic free many times for longer and longer periods of time. And when he does have tics now they are soooooo minor no one would notice - and when he had his onset - I could not take him out of the house - he had complex motor and vocal tics by the second. So even with those severe tics there was no permanent damage done to the basal ganglia.

 

Good Luck to both of you.

 

I also wanted to add - to the other newcomers - a few weeks ago there were a few posts about this being a long journey - while this is true - it is one so worth being on. So much good has come out of this - which I did not believe was possible at the beginning. I think my son is now reaching his true potential - and he would not have had we not been faced with this - his health is better, eating is better, etc etc etc. And while his diagnosis was 1 1/2 years ago - time has gone by fast - it has been just over a year since we started on this alternative route - and things have only got better and better - the blips are smaller and shorter as time goes on - and we have never had an episode like the first one. No one would know there was anything wrong with my son now - no issues at school, does well academically, is athletic, confident, happy.

 

I hope this gives you all hope.

[Giselle]

Kim, I'm singing your praises over at Brain Talk because your discussion of phenolics resonated with my current problem of getting Hoyt to sleep. I think he's having problems with them - his enviro doc had told me he did and given me a homepathic for him to take but I have been remiss in giving it to him. He's been eating cherries like they are going out of style, drinking pomegranite juice, eating cucumbers (his new favorite snack), tea, and I had upped his P5P because he was ticcing after a growth spurt and I believed he might need a little more (approved by his enviro. doc). At first after the P5P I thought I saw improvement but now I see that he got worse tonight. His dark circles have returned - which I thought was from staying up with all this not sleeping stuff but now see he has red ears, and is developing an ever so slight rash on his left cheek and of course the not sleeping thing. So his P5P is going back to normal, no cherries, tea, cucumbers or pomegranite juice and even more epsom salts baths and back rubs with the magnesium cream when he can't get a long enough soak. Thanks for posting this information about phenolics! So interesting!!! Again I'm indebted!!!!

Giselle

[kim]

Giselle,

 

So wonderful that this info. may have helped.

 

You might want to take a look at Susan Owen Biochat on page 4, and check out the oxalates too. It's about 3/4 of the way down the page.

 

Do you remember if Hoyt ever showed crystals on a urine test?

 

Looks like high oxalates and phenols may have a common link, to me.

 

right back to you and Hoyt!

 

Kim

 

Bumped the no fenol thread for you.