Saw Doc B yesterday!

[Fixit]

He is as wonderful as the stories...i hugged him a couple of times

been driving from ga to va to nj then..... to ct for the day...

he was patient and kind..my sister went with into visit..my brother watched other kids in the car with a movie...

my sis liked him so much...and we are tuff cookies from nj...

anyway...DS has been doing !!!!!!!!!! on the taper...please pray it sticks and continues to actual healing....

so, ds almost presented with nothing in the office ....of course....

 

one thing he is pretty sure about and he almost has me convinced...is doing allergy shots?????

ds came up with his 4 standard indoor allergies...cat dog dust mite and 1 other

but the arm with the outdoor allergens was pretty much all highly inflammed except for about 4....(thats about 20 or more)

so....doc says...it's not the allergens crating the pan/pits...its that his body so worn out from fight the allegens it can't fight the infection..and/or its that the infection gets stuck in the sinuses as they are not draining and triggers the episode...

i pretty much buy it as ds did not start the tics until 4/6/09 well into the allergy season..though the highest count of the year...and everytime we did get an episode in the spring it was late march early apirll.....

he said there is nothing in the shots but the allergens...no mercury, or thermiasal....

 

anyone have thoughts....

[mkur]

My neighbor was highly allergic to poison ivy. Her dogs would get it running in the fields. She use to get shots because she could not avoid the exposure without giving up dogs. It really worked for her but she was not a panda.

 

One of my friend's son has mild tics plus ADHD and he has mold and cedar allergies - also impossible to avoid in Texas. The shots really made a difference for him. No problems - just time - must go once every week.

 

Don't know of any pandas treated for allergies. Sorry.

[faith]

Fixit,

you could peruse the TS board, there are many old posts with talk of allergy treatment and shots, I'd say its mixed reviews. some say it didn't help much, some think it may have triggered some tics. I have had environmental allergy testing from our Dan doc who is an immuno on my son a few years back, and the allergy treatment was a nasal spray with the allergens in it. I didn't feel it did anything remarkable in the long run, so we abandoned it after about a year. it did not eradicate tics, which we were honing in on at the time. what it has to do with Pandas, not sure. Does your son show traditional symptoms of allergies, such as respiratory, nasal drip, etc.? I feel like I keep hearing about sinuses from dr. b. patients......

[thereishope]

I believe mom md did allergy shots with her son. Here's a thread to read

 

http://www.latitudes.org/forums/index.php?showtopic=6079&st=0&p=46452&fromsearch=1entry46452

Edited July 30, 2010 by Vickie

[LNN]

I can't advise you on shots for your Pandas child - that's a gut call as far as I can tell. I will tell you that allergy shots for me (pollens) did wonders. Just about eliminated any sense of having allergies at all, even this very bad spring. My daughter (5) started shots in May (previous springs, her eyes would swell shut). She has done awesome - her summer allergies are less severe and I think by next spring, she'll have a far better quality of life. But she is only a question mark for Pandas - something makes us go hmmm and she has GI issues that may trigger episodic OCD - nothing definitive.

 

That being said, I don't know how I'd feel if my Pandas son needed shots. I know he can get a cold like normal people - so his immune system seems to fight viruses normally. It's possible he'd also do ok with shots. Perhaps it's just bacteria that confuses his body.

 

You could always stop at the first sign of anything bad and use a prednisone taper to halt a pandas episode. But you will have to do a gut check and do what you think is best.

 

BTW Faith - you may hear more about sinuses from Dr B patients because he looks up people's noses for a living. The neurologists we've seen didn't spend a lot of time, if any, checking my son's sinuses. But it's the first thing my allergist does after he finishes saying hello. Similarly, allergists aren't checking reflexes and milkmaid grips. I would expect that your line of investigation is guided by your specialty.

[Phasmid]

Hi C-!

 

No WONDER I couldn't reach you!!

 

I am so happy to hear it went well! Cory is still doing WELL on the pred, but we are almost done and are only on 5 mg. now. I am now trying the NAC for the trichotillomania. I think I'm going to get him started in behavior therapy as well.

 

As for the allergy shots...

 

He did them last year. He did fine, no issues. I think it DID help some. He is still VERY high IgE but not near 1000 as before. I feel that they are fine to do, and may even help the situation some. Just my 2$

 

Hope to hear from you soon!

 

Mary

 

 

[Suzan]

Hi, so glad the appt went so well! Congrats! Regarding the allergy shots... my dd8 is getting them. She is allergic to practically everything (trees, grass, weeds, mold, dust, cats, dogs, etc.). I was very worried about the allergy shots but so far, she is handling them just fine. I don't notice any ramp in her symptoms when she gets a shot. I did the first couple of weeks but we have been going for months now and it is fine. I hope very much that it will help her in the long run by calming her immune response to all these things. In the mean time, we are also getting IVIG and are on antibiotics. She is still suffering in the mornings and evenings and we have a lot to still overcome. I could never recommend the allergy shots because I feel like each child is different so going with your gut is my best advice too. I don't know if I will ever know how much they helped but I hope to post a wonderful, glowing post next year about how she is doing after a year of shots.

 

Susan

[Fixit]

Hey there Phasmid..out of pocket for the next week...on to Doc L next week..wish me luck everyone!!!!!

how did you get your doc to go 5 mg...i mentioned it to Scott to do a fifth week at 5 mg and he said that the 4 week taper was enough..

today is 2nd day post taper.....

 

to everyone...my general question/statement is...doc b doesn't think allergens cause the pandas reaction..its that everything is already inflamed and cant drain out something if it gets into the sinuses.....

and for ds, he looks like he's been in a bad car accident every moring...starting slowing in feb..building in march and by the end or early april we would get an onsett be it from strep...(no pos strep culturees in past 2 years)or some other infection...so that would hold with his theory...(and maybe that is where ds got the myco p..as my 3year old was just tested and he had a myco igg also)so maybe that was what they had in april of 09...but sometimes i still wonder if it's not just purely the allergen once it reaches a tipping point

 

thanks for everyones thoughts.....

[Phasmid]

Ok, good luck!!

 

RE: the pred taper-

 

He started at 4 tablets of 5 mg 2x/day (40 mg) for 7 days, then went to 3 tablets 2x/day, to 2 tablets, to one tablet 2x/day, to one tablet/day for 7 days. Dropping from one tablet 2x/day to nothing is kinda fast drop. The full taper down to just one tablet daily just ensures that the body has had ample time to adjust. Probably not hugely important, but just less shock on the system. It turned out it probably was a good thing for my son, as he got sick during that transition, and was having some trouble fighting the cold he caught. He ended up getting an ear infection from the congestion, which is not very common at age 11.

 

Keep us posted!