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my son's story


Cristo
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My ds7 really improved everything after being on azithromyin for 3 weeks. No sinus isses, no snoring, no itchy ears, no chest pains, no chest congestion, no sore throat, and no anxious behaviour. The tics slowly subsided, but that took time. They initially went away within two weeks of azithromycin, and then came back when he ate something with sugar and dye in it. My son had an ongoing stuffy nose, cough, chest pain, and itchy ears for months and months on end that suddenly stopped after taking three weeks of azithromycin. Actually, his stuffed nose had been around since he was three years old, so that means that he had it for four years, along with an ongoing cough that never really went totally away. I found the whole thing odd. His pediatrician said it was allergies. She had an xray of his adenoids and determined they were enlarged. I suspect that he was harbouring stuff in his adenoids, tonsils, sinuses, chest, ears, and throat. He had confirmed strep, that the doctor treated once, and then said to wait and see, then next time. It is just too weird that three weeks of azithromyin cleared him of the four years of his ongoing cough. He couldn't go swimming without crying that his ears hurt, and that water went in his ears. The ent said he was normal. He continues to have big tonsils.

 

We switched pediatricians. His new ped says to let him know if ds7 has an ongoing cough, because that is not normal.

 

I also go to doctors who will prescribe antibiotics, because most doctors are reluctant to do so.

 

It just all seems weird that he had such huge huge symptoms dealing with infection (as far as I see it) and the doctor just said it was allergies. She referred to an ent, who said that it was ok, just wait and see. In between all of this, whenever he would have fever for a few days, his former ped would do an xray, and then determine that he had pneumonia. Believe it or not, she said that she never could hear the pneumonia on her stethescope on any of the times that he had pneumonia. She only determined that he had it via xray. So, she said that he had it deep in his system.

 

So...it looks like my son has pitands and pandas. Infections bring out the symptoms. Fever makes me scared, because it is a starting point. When he says that he has a headache, it is an indicator that he is run down and will get a fever that night or the next day. If I don't get azithromycin right away, his handwriting gets really bad, and he doesn't have the same happy go lucky personality. I just find the whole infection thing interesting. Is that because he has the strep bacteria or pneumonia hiding waiting to come out when he is sick, and make things come back again?

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Have you seen an immunologist to see if you son is making antibodies for pnemonia? Many pandas kids are immune defiecient, and they will keep coming down with viruses/bacteria that will set off pandas episodes. I'd get some immune testing done - Igg and Igg subclasses, pnemonia serotypes, MycoPlasma (this is "walking phemonia" and anything else an immunologist recommend.

 

Also - that "unproductive" cough that ped is asking about - that is a symptom of mycoplasma pnemoniae - the walking pnemonia I mentioned above. Good luck. We made alot of headway in dx our sone with one trip to immunologist. Even though fairly healthy, he was immuno deficient...as MANY pandas kids are.

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Your son sounds similar to my son at that age in many ways. I wish I had this forum then! Your son may have an underlying infection that is continuously brewing . Any small infection or allergy flare up can be enough inflammation to breach the blood brain barrier and cause a PANDAS (PITAND) reaction. The key is to find the underlying infection and treat it.

 

I agree that an immunologist is a good choice. You really need to look for mycoplasma, lyme, strep, and get a full immune status panel to check for s. pneumoniae titers. These will tell you if he is deficient in producing antibodies to s. pneumoniae, which causes many sinus infections. It will also check total IGG and IGA for immune deficiencies. You should also get C3D levels.

 

Dr. Bouboulis is an immunologist who is a PANDAS expert. He is in Connecticut. If you cannot get to him perhaps you could use another one of the PANDAS docs and an immunologist in your local area. YOu can PM me if you want details about our experiences.

 

Best of luck!

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It sounds like mice that enter a home from the outside to stay warm during the winter, can also transmit mycoplasma. Every winter we find that mice enter our home. We have covered different types of holes. Perhaps it is that the neighbours on either sides of us have cats, and the mice hide out here. It is awful! We have a nice home, and then these critters come in to hide out. To me, it is all gross. It is always around this time of year. We now believe that we have figured it out, and believe that they are getting in through the front screen door on the bottom, because there is a small space under the door, and the vents that cover the bathroom fans and the kitchen fan. Hopefully we will put an end to it all next year.

 

My son asked for a hamster last year. We bought him one, and come to think of it, the hamster and the birds, combined with the repeated strep, pneumonia, lingering cough, stuffed nose, loud breathing at night, chest pains, itchy ears, repeated fevers, and the odd behaviours (tics and anxiety) could all be linked. I don't know. Just trying to figure stuff out. Plus, a neighbour accepted a play date just before my son got very very sick last year with the "sudden change", at our house, and she was continually coughing. My son had his typical cough, and she had this continual cough. People have accepted play dates at our house when their kids were sick. So weird! Another family of kids came over just before my son got sick with the "transformation" last year, and they all had fevers! Hello! Also, just before his "transformation" laswt year, one day I had a crisis at work, and asked the local babysitter who lives on the street to pick up my son from school, and watch him for one hour, because a situtation had arisen at work. While it would have been nice for her to tell me that that she was totally sick...she didn't. Imagine the shock I had when I picked up my ds and saw the local babysitter TOTALLY sick, with cough, fever, and looking all run down! Seriously...just for a mere 10 dollars, she chose to expose my son to that! Of course, two days later, he was totally sick.

 

Anyways...I am trying to figure out what happened to my son. Perhaps he has a whole bunch of things that are still brewing inside. Is any allergist/immunologist an acceptable person to go to? We live in Ontario Canada.

 

My parents have cats that every so often escape outside. I have always worried about the cats, because on occasion they have fleas...maybe ticks...who knows? We just went to see them, and I made sure that we only stayed for one hour. I was afraid that my son would pick up something from the cats. I know...paranoid, and worried.

 

What about Christmas trees? Don't they potentially carry ticks from the deers in the woods? I found bugs on the tree that we bought at a dept store. When we opened the tree, little critters came out. YuK! I will only go with artificial next year...and of course...subsequent years.

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There are many immunologist/allergists in Ontario. Would any of them do, or do they have to be specialized? I live in Ontario, Canada. My son went to three immunologist/allergists in his life when he was 3. One determined that he had allergies to dust mites and mold, and penicillin, but he didn't have the component to prove the penicillin one. The other determined that he had allergies to penicillin (amoxil), and also didn't have the third component needed to determine whether or not he is in fact allergic to penicillin. We then were sent to Sick Kids hosp. The allergist there, determined that he gets an allergic reaction, but will not likely have an anaphalactic reaction. Nobody checked his immune system. Can I go to any of the allergy immune doctors and get the tests that I want done, or do they only do those immune panel tests at special labs?

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HI Cristo

 

It is all so confusing and so wrong that we are put in the driver's seat having to figure out all this medical stuff for our own children!!

 

I have no idea about the medical system in Canada, but my guess is that regarding PANDAS awareness, there are just a few MDs who might be considered PANDAS friendly or at least PANDAS literate, same as in the US, unless Canada is somehow way ahead and has some PANDAS protocol embedded within its system which is totally doubtful. So unfortunately its up to you to find a provider within your system of care, or, to go outside your system to a known PANDAS physician. Many of us have had to do that here in the US, paying out of pocket for our children's care.

 

That said, with your son's history of ongoing immune issues, it seems that any immunologist can follow the testing protocol for immunodeficiency testing and mycoplasma testing, there isn't a mystery to those things. Has DS been actually tested for strep, with ASO and anti-DNAseB titers? Those things can all be done through any immunologist, and even through a pediatrician who is willing to run those tests, at least here in the US.

 

And you know, it does seem that for the most part, kids that develop PANDAS have some already immune stress or issue in place that makes it harder for them to clear the primary infection. So even though all of those children you talked about that had playdates with your child ended up sick - do they have PANDAS? Probably not, same with my son. There were plenty of kids that had strep that year in his school, but as far as i know, he is the only one that ended up with PANDAS. Well, years later we know he has had celiac disease his entire life, which is also autoimmune and probably had some hand in why his immune system could not shake off the strep to begin with. Since it sounds like your son has been seeing immunologists at 2 or 3 years old, treating him involves treating the PANDAS plus any other infections plus if possible, getting down underneath whatever his immune thing is and working with that. At least, testing for as much as you can, definitely immunodeficiency and co-infections.

 

Best of luck with your son

amy

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