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PANDAS confusion


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Remember, antibiotics only fight 80% of the bacteria. It is up to one's body to fight the rest. No matter what approach you take, healing the immune system is imperative.

 

 

Sunshine

 

I so agree with that Sunshine!!!! :)

 

glad to hear things are going so well

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  • 5 weeks later...

Hi there,

 

We also had a very similar experience with our son worsening once off the antibiotics. It is hard to believe but we have been dealing with all of this for 5 years and let me tell you with time all of it is just so much easier to deal with. We do still have our ups and downs but nothing compared to a few years ago. A turning point for our son was switching to clindamycin three years ago. He has been on the clindamycin approximately 5 times since then with good results. Having said that we have also treated for yeast, removed milk from his diet and corn, eggs and chocolate to a certain extent (milk is the biggest trigger though), we use essential fatty acids which help ALOT and do use Bonnie's vitamins (though he does not like to take these so we don't fight with him over it).

 

Hi Ronna, My name is Dominique. I have a little boy age 7 who in last January came down with a cold.

Actually it was his sinused were completely blocked. Then one morning he woke up with a migraine headache and an hour later started jerking his neck uncontrollably back and forth. Then a week later he

was jerking his wrists back and forth. Then the ocd set in full force. He then complained of a sore throat

and i took him to our family doc. The doc tested him for strep a nd it came back positive for strep a.

He put him of a 10 day round of amoxicillin 250mg twice a day. Took another culture and it was positive.

We then went on Augmenton, 250mg. twice a day for 10 days. When finished another culture was done

which was again positive. The doc said nothing more we can do he must be a carrier. Over the next few

months our sons symptems started to improve. No ticking and ocd disappeared. This was May thru now

which after doing tons of research on Pandas im am now convinced that he has this. I finally had the courage last week to get a pandas pane done and my suspicions were corect. he had very high antigens

The doctor at the lab suggested he go on antibiotics asap. and suggested a doc that specializes in Pandas.

i called this doc and he said forget the antibiotics and instead have my sons tonsils and adnoids removed at

once. He said the step toxin is hiding somewhere and it loves to harbor in the adnoids. I went to ear nose and throat doc and he agreed even though he never heard of pandas. Anyhow im am convinced that my

son was not a carrier like we thought but instead actually had an infection which the antibiotics werent strong enough to erradicate. I dont think amoxicillin was potent enough. Anyhow in 'sept. we did another

culture for strep and it came back neg. Thats what makes me think he never was a carrier. The doc thinks

because he really has no symptoms presently ;he cant have a strep infection but he has some of the highest

antigens the lab has ever seen. Why would they sugest antibiotics asap. So know im headed to a ped. infectious disease doc mon. to see if we can maybe get a high dose ofClyndamyacin to wipe this nasty bug

once and for all. Now im reading today that taking antibiotics when your finished symptoms can come back

with vengence stronger than before. Even if my son presently has no symptems and take antibiotics for a

couple of weeks. or is this with children that have symptoms and go on long term antibiotics? Im also

scheduled to get his tonsils and adnoids removed in 2 weeks. Im so confused at this point im pray that imn

doing the right thing. If the tonsil removal is the cure for this disease or a great preventative measure for

not getting another strep infection. why am i not reading or hearing anything about this. If we erradicate the strep will the antigens go away.?If I dont find a solution soon im taking him out of school selling my house moving to Arizona where the chances of him getting step will be greatly reduced. Can a child have just one onset of this pandas and the immune system normalize? Im taking great care of hinm the past 6

months especially. No wheat or dairy probiotics daily lots of vit c omega cod liver oil etc. Now today i read

that by strenghtening hes immune system i migh be overstimulating it and making things worse! If I dont

strengthen his immune system how can i prevent him from catching the one thing that will make him sick again? I hope this makes somesense. Anyhow where do I go from here. I live near san fran. cant seem

to find anyone that knows about pandas. I wish i could sit down and have coffee with someone that knows

about this disease. Help! Now that winter is here im on pins and needles waiting for thenext infection.

Ill go anywhere in the country to get help for him. Ive read a few stories about kids that have pandas

symptoms take a strong dose of antibiotics and ther back to normal. In the preventative magazine article

they talk about Luke having pandas symptoms taking amoxicillin for a month and he was back. Is that

possible? They make it sound so simple. I guess every case is different. Please if you could respond

as im ready to remove his adnoids and put him on another round of stronger antibiotics. Last thing i want

to do is have a reoccurrace of his symptoms just because ive given him antibiotics.

Is it true if you catch pandas on the early onset that you can prevent basil ganglia and nervous system damage? I hope so, please help me im truly at lost here and dont know where to go next.

Hope to hear from you soon.

Best regards,

Thank you

 

Dominiquej

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Dominiquej

 

Until Ronna or Alison or someone with a lot of knowledge of PANDAS gets back with you. you may want to do some reading here;

 

http://www.google.com/search?hl=en&ie=...val&spell=1

 

This is an excerpt from one article;

 

http://www.pubmedcentral.nih.gov/articlere...i?artid=1242222

 

The interesting finding in the present study was that nearly one-third of culture negative tonsillar core specimens were positive for S. pyogenes by PCR. The failure of conventional culture to reveal the presence of S. pyogenes has been attributed to its ability for intracellular penetration [24-26]. EM revealed several coccoid forms of intracellular bacteria in the crypt epithelium of diseased tonsils, which was frequently accompanied with the damage of connections between epithelial cells, called tight junctions. Although the type of intracellular bacteria is unknown, a correlation between the presence of S. pyogenes by PCR and the longer morbidity period of RT suggests that hidden persistence of S. pyogenes in tonsils may in some cases be responsible for continuous inflammation in its tissue and formation of sclerosis.

 

In the pathogenesis of concomitant inflammatory diseases of other tissues and organs, such as glomerulonephritis and IgA nephropathy, reactive and rheumatoid arthritis, chronic inflammatory and autoimmune neurological disorders, the key role has been attributed to S. pyogenes [27-31]. The high rate of comorbid diseases in our RT-TE patients suggest that TE is often undertaken to eliminate the reservoir of putative pathogen, e.g. S. pyogenes, despite a negative throat culture. Seemingly, one of the solutions to prevent repeated attacks of tonsillar infections in the early stages of RT is to apply treatment plans with antibiotics effective against intracellular bacteria, particularly among patients with a high-risk for comorbidity. Among our patients, the candidates for such a conservative therapy could have been 18% of patients who had three or less tonsillitis episodes, but had neither the signs of sclerotic process on oropharyngeal examination nor supporting comorbidity yet evidence of S. pyogenes in tonsillar tissue.

 

After getting as much as you can out of your own research, I would make a list of specific questions to ask your Dr.

 

How many cases of this have you seen?

 

What was the outcome after removal of the tonsils? etc.

 

In regards to your worries about using supplements that may have make things worse, I would just like to reiterate what Chemar basically said.

 

There is a difference btwn. supplementing/supporting the immune system and trying to BOOST it. Where there is a suspicion or known presence , of autoimmune related disease, avoiding BOOSTERS would make sense (I'm no expert here).

 

You might want to take your time, and not make a decision until you are really comfortable about it, regarding the tonsil/ad removal.

 

You can always reschedule.

 

Will be watching to see what replies you get!

 

It's wonderful that you are so determined to make any sacrifice necessary for your son. What a good Mom!

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For the record, my nephew, a mild PANDAS kid, did have his tonsils removed, but there was not much of an improvement. It seems as though the strep has found a new place to linger - it could be anywhere in his body. His antibody levels are still very high, and he still has his symptoms which improve on antibiotics.

I don't know if removing the tonsils is THE solution. I think it just diverts the strep elsewhere.

 

It's interesting that many PANDAS kids have sinus/adnoids/ear infection problems. I believe that it's an allergy or food intollerance that is the root of the autoimmune problem.

 

Good Luck with your son!!

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Hi Dominique,

 

Your son's situation sounds similar to my 6 1/2 year old son. He also had a sudden onset of symptoms after being sick. Likewise, it cleared up on its own. For him, it did reoccur. We have been on a rollercoaster ever since. His adenoids are SO big that you can see them when you look up his nose. His breathing is severely obstructed. He has tried many different antibiotics including clyndamiacin.

 

I have read that removing tonsils and adenoids can improve things. I personally worry about anaesthetic being harmful to my son's system. I think that my son was susceptible to PANDAS because of a compromised immune system due to a variety of things, including 3 operations requiring anaesthetic. I have no proof, just my gut instincts as a mom. He just has a hard time eliminating toxins from his body. Perhaps this will change as he grows older and bigger. However, I have been told that a younger person recovers quicker from surgery.

 

My son had a terrible reaction to clyndamiacin. He was on a 10 day course in May, and it was SO hard on his GI track. He totally regressed, and it took him months to recover. However, other people have found great success with it. Every person has such a different reaction. It can feel like a bit of a gambling game.

 

Good luck with your decisions... they are hard ones to be faced with.

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Hi Dominique - I have read a few of your posts but have been so busy - my son also has PANDAS after a sudden and severe onset of tics 2 years ago - you can read through some of my old posts for info on our journey - antibiotics worked initially and then every time we went off them his symptoms came back - we then went on prophylactic amoxycillin, went off foods as per the testing we did, starting vitamins and removed screens - replacing with an LCD, also lights at school were decreased. He was doing pretty well - still some emotional lability and whenever there were viral illnesses in the house, he would get symptoms and I would keep him home from school - he missed about 40 days in total, lots of half days last year. Luckily he does well in school so marks were fine. We decided to take him off the antibiotics this summer to see how he would do, as it had been two years, he did awful - vocal squeak every second. The amoxycillin no longer worked, we tried a few more and nothing was really working - then we went on azithromycin - it has been amazing, he is at 100% most of the time. I thought he was doing well on amoxycillin but he is doing SO much better now - no emotional lability, lots more energy - 100% tic free most of the time (on amoxycillin there were still subtle tics no one would notice - now I really have to look for them - and often can't see any) A few weeks ago he had an increase in tics - his brothers were sick. After riding it out for 2 weeks I put him back on the azith - for 5 days and all symptoms were gone again. He has been on it since the last week of August - we has been doing so well during this time - other than the couple weeks - and he was having throat clearing and sniffs as he had a cold. It just triggered tics for him. He stayed home for one week. He takes it once a week - which is nice, we continue on probiotics religiously as well, we now only give him a multi vitamin, it has been a good 4-6 weeks that he has only been on the multi. He looks so healthy now - and so happy. I had not realized how much we had not heard him laugh etc - sometimes it is only when things come back again that you realize they were gone. I have come to appreciate the little things so much more, like him running full speed from the car to the line up at school, not a single tic, no unusual motions just a very happy boy running to see his friends. So much different than 2 years ago when I would watch him twitch coming out of school, and look neurologically taxed somehow. His movements are so fluid now. Just want to give you some hope - I many times felt so lost - searching for answers and wanting to wake up and find he was better - it all happened so fast I wanted it to go away just as fast.

My son already had his tonsils and adenoids out prior to the PANDAS - I am sure that had he not, I would have gone ahead with the surgery in hopes of it being an answer - I have read some find it helps. My son's titers have remained elevated throughout the last two years. We have not tested him since the summer. We are seeing an immunologist in December ( for the first time).

 

Good Luck, keep searching for answers - and know there is hope. Your concerns about basal ganglia damage is one I always had - my son is 100% tic free most of the time now - so I think there has been no permanent damage or he would not be tic free. They are just little kids, it is amazing how resilient they are - and how their bodies can heal. If you have specific questions - I will try my best to answer based on our experience.

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Sunshine, My story is very similar. Our doctor thinks my son is a carrier as well and wants to put

my son on a 10 day round of Clindamycin and Refampin to try to erradicate the strep. My concern is

he hasent really had symptoms since last April. Im afraid that if we put him on this 10 day course

all of his ticking and ocd will return and maybe be worse than before. Ive been doing the same

vit c B6 B12 mag calcium probiotics 5htp sellenium glutatione etc. every day for months. He went on

2 rounds of amoxicillin back in March. His symptoms improved and then when off worsened. My

doctor is afraid that if we dont erradicate it it could cause real damage to his heart. I thought when

your a carrier this doesnt happen. Hes been tested to antigens very high and autoantibodies positive.

Could he have the true infection instead with no symptoms. He was tested for the 4th time this year

and the culture came back positive all 4 times. Have you tried the Clindamycin yet? Has your doc

ever seen a sucessfull strep erradication in a panda child? Please let me know how it goes. Im

suppose to start the round tomorrow. Were also planning on having my sons tonsil and adnoids

removed nextweek. this is war. Im not ever going to give up. I too feel like im loosing my little

boy. Im on pins and needles now that winter has arrived wondering when ###### have another episode.

Hope to hear from you.

 

Warm regards

Dominique

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Hi Dominique,

 

I TOTALLY understand your quandry. I have been there myself... what to do re:antibiotics???? I tipped over the edge last May/June and gave my son a 10 day course of Clindamycin when his sister had strep. I have no idea whether or not it erradicated the strep. It did cause a HUGE regression for my son, which was very difficult for him and the rest of our family. I still don't know if it was the right decision, but at least I have tried. I have no regrets now that he has recovered. He has been doing very well for the last few months. We are thankful, and we are basking in the glory of respite.

 

However, I do WORRY about what this winter will bring. We live in a very wet climate, and flus/colds are rampant up here during the winter time. He has regressed in December for two years in a row. I know that a set back will be VERY difficult for all of us. I have read before that PANDAS children can have a more difficult time in the winter months. We are doing EVERYTHING that we can to avoid another setback. Who knows if it will work.

 

My son's doctors have not treated PANDAS before. They are aware of it, but only from reading about it. What they read seems to support the idea that the strep MUST be erradicated to help the child.

 

In my humble opinion, antibiotics are very helpful to many PANDAS children. Strep is a bacteria that needs antibiotics for treatment. But, the immune system is still the key, and it MUST also be addressed for complete healing to occur.

 

It TERRIFIES me to think that strep can cause permenant damage. It can surely hide well in one's system. It is a five letter word thatI have grown to HATE!!

 

Good luck with your decision.

 

Sunshine

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