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I am sorry...my apologies. Please forgive me


eljomom

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Eljomom..

 

Actually, I have a PANDAS son who was strictly a ticcer! (and yes...he ticced A LOT at one point with variouus tics.....he had a sniffing tic that was every 5 seconds all day long) My other son had numerous tics (VERY bad vocals at one point...totally frightening)..as well as numerous, evolving motor tics..but, he also had ocd, anxiety etc. ....the works. I think what you MAY be missing is the fact that these are PANDAS tics.....not the tics of Tourettes. PANDAS symptoms respond to treatments differently, and to different treatments, than Tourettes tics do. Are you referencing the dopamine/steroids increase from a tourettes site? So, yes, ticcing was a big symptom here.....and like I said before...a 5 day burst stopped a big tic increase (at that time it was only tics that were increasing) in its tracks. Up to you......

 

I don't think tonsil removal is an "off the wall" treatment. And I really don't think that a short course of steroids is less invasive than IVIG...not by a long shot.

 

I think I have said all I can say.....I think Kayanne makes a good statement for you......"if you are not comfortable with the risks of treatment.......accepting where you are is important in moving forward with your life."

Edited by P.Mom
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P.Mom---thanks. Had your ticcers been ticcing for long when you tried the steroids? It does make me feel better hearing from a big ticcer who had steroids work. My brother has Tourette's (had chronic strep as a kid!!!), and father in law had rheumatic fever (died of second heart attack at 44), so something's predisposing my dd (well, a couple of my other kids too!). Who knows, my brother could have been pandas. But my mom swears his Tourette's was not like my dd's. The dramatic onset, and so many tics, etc. But I think that's why I do have TS on the back burner. He also has ocd.

 

Tonsils out...I agree totally ---NOT off-the-wall, unless the child has no known strep infections (she wanted it done before dd's first strep we know of, a month ago ...and she didn't raise titers with it), not enlarged tonsils, etc. My ped. said NO ENT is going to pull tonsils in her situation unless they are working with a pandas doc, etc..

 

Can you tell me about short course of steroids not being less invasive than IVIG?

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Well.....my younger son was the one to get the bursts. Before he got the first burst....he had tics (and ocd, etc), for about a year before he got it....not severe tics...not constant tics, but, wax and wane , evolving tics.

 

My ENT pulled my younger sons tonsils out basically on my sheer request. No kidding....my son only had two strep infections (known of)...his last strep was at age 4, and he just got them removed at age 8. No enlargement... no recurrent infections....no reason to do it really other than I explained to him what happens to him when he gets strep.. he said.."well, by all means...let get them out! " He never worked with any PANDAS doc.....so that is a big statement by your ped.

 

Steroids are a non-invasive treatment. Invasive means..well, how do I put it ....that you really got to "invade" your body for the treatment.....like open heart surgery is way more invasive than tonsillectomy. Oral steroids are non-invasive.

 

(You meant to say..."steroids being less invasive than IVIG...right?)

 

Here is a better explanation..... "An invasive procedure is one in which the body is "invaded" or entered by a needle, tube, device, or scope."

Edited by P.Mom
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I am new to all this, So I am not sure this will even mean anything.. but I hear in your posts how I feel starting out. We had the blood tests and I am overwhelmed by the options of treatments and different Dr philosophies. I don't know where to start and I don't want to do anything that will make this worse or cause damage to my son. It is a lot to take in. It is a lot to deal with along with the grieving that goes along with watching your child suffer.

 

I watch this with my DH too who has MS. He is in the middle of an flare up and is numb on his entire left side. Back on steroids he goes. I guess that is not the same but watching him suffer through the 21 days of Steroids, and thinking of my son having to go through treatments that may make him feel bad or cause him pain, well, it is just not acceptable.

 

I just wanted to say, Venting is part of dealing. I learned a long time ago that when I am having a bad day, I just need to say to everyone, It is not you, I am in a crappy mood, Please bare with me. and they do.

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I don't have much to add as I haven't had to deal with all of these tough decisions as my son presents so mildly but regarding the tonsils... I am certainly not suggesting it to anyone but we also had my son's removed.. The ENT was not familiar with pandas until I discussed it with him. He got his laptop out right then and there and "googled" it and told me he felt comfortable with my reason for doing it. My non pandas daughter had hers out because she fit the criteria of multiple strep throat within a certain period of time. My pandas ds had never had a sore throat in his life (or never told me about it) but did have positive cultures at times I asked him to be cultured based on pandas symptoms) as well as elevated titers... my ENT originally described ds's tonsils as small and they looked ok to him... when he took them out he said they were a shrivelled up infected mess and that in fact many small tonsils are really just that...That alone made me happy with my decision...whether or not it has helped my son I have no idea.. he was mild before and is mild now.

 

So while I am not suggesting it at all, I think that small tonsils that look good don't really mean anything.

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Wow....small tonsils being that bad, huh? This ENT actually sprayed in her nose to numb it, then scoped her....through her nose, down her throat, to look at tonsils and see if adenoids had grown back in. I don't know if this means he saw more than what the other docs who said the tonsils are "small" saw. I just don't know anymore. And with NMom's scary post about steroids tonight......

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I totally agree with DCMom. I think the hardest thing has been to make a decision. One thing I have finally learned is to go with my gut...every single time. Not that I don't listen to our docs...I most certainly do. But, as DCMom said, we have to be the directors and everything else for our children. Don't be scared off by IVIG, steroids, PEX or anything else. Both my chlidren have done it all, and yes, we are dealing with Lyme as well as PANDAS, and we are probably dealing with other infections, too. As far as I'm concerned, I'm thrilled that I did all of these...not only because they have helped, but also because I can say that "at least I have tried." In my opinion doing nothing is worse.

 

Think of it this way, if you do nothing, you know what your consequences are going to be. And, you have said that your daughter can't live this way, and that your whole family is completely stressed. Sometimes, you just have to trust your doctor and your own gut.

 

I also think that DCMom's suggestion to decide...what should I tackle first...is the best suggestion I've heard. Then, at least you are doing something.

 

Oh...also...tics are not always the last to go. We initially had an increase in tics after PEX, but suddenly they were gone after about 3 weeks (they come back sometimes, but not as badly), and there wasn't even an increase in tics at all after IVIG (DS's were so bad that he had to go to the ER several times for O2, because he couldn't breathe.) I'm not saying this is the case for everyone, because I do know that tics area huge problem for many, but just keep in mind that every child is different. Steroids also helped us when things were at their worst. Even though I try to avoid them now, because I know we are dealing with Lyme, I would do them again, if necessary.

 

Good luck, take a deep breath, and really decide...what am I going to do. Then do it. BTW...we see many of the docs...I consider them all part of our team. I listen to each, and then decide what I feel makes the most sense to me. And then I go for it.

 

I'm praying for you.

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Wow....small tonsils being that bad, huh? This ENT actually sprayed in her nose to numb it, then scoped her....through her nose, down her throat, to look at tonsils and see if adenoids had grown back in. I don't know if this means he saw more than what the other docs who said the tonsils are "small" saw. I just don't know anymore. And with NMom's scary post about steroids tonight......

 

 

Ah, I don't know the answer to that. The ENT had not scoped my ds so his account of small tonsils that loooked ok was just based upon looking down his throat. You might be right although I would be surprised than that they wouldn't always scope them before removing them. My ds did have positive strep cultures though despite no sore throats/fevers including having the positive culture once when he had pink eye so we did have some hints that there might have been infections. I sometimes wonder if maybe he had sore throats and just had a high pain tolerance to it and never told us. I don't know... It's never an easy decision. My son had a reaction to the anesthesia that for a few days I was really angry with myself for doing this but thankfully one week after the anesthesia affect just disappeared and he was fine.... Oh and since my dd and my ds had their tonsils out we have not had strep in the house at all.. it's been 1 1/2 years now. We don't know who was getting it first.. ds having it and my not knowing it and my dd getting it or dd having it and giving it to ds. I do believe he is affected by other things, any time his system is run down.. so exhaustion, over excitement, exposure to other illnesses... but it presents mild. I actually think my decision to do it would have been easier if he had been more severe.. I struggle with what do you do for a kid whose so mild that anything of the options don't feel right... My son is so mild that I have now chosen a wait and see approach to everything. I had him on one year of antibiotics and have had him off now for a few years and had his tonsils/adenoids out.. that has been all I have done. I don't see any big differences from when he was on the antibiotics.. we seem to have waxing and waning with time more than antibiotics. Is he quirky? yes... would other mom's of pandas kids say he's not 100%, yes.... does anyone other than my dh and I and my parents who get it notice anything with him.. no.... do I worry all the time about him.. yes....

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I have not read all of the replies to this post. Mostly just skimmed them. Here is my 2 cents...

 

I don't understand why steroids both oral and iv are not standard treatment for pandas kids. Steroids are cheap, cheap, cheap and they work. My 7 year old has been on two steroid tapers. Those tapers saved him. The antibiotic killed the infection and kept him from getting strep. The steroids jumped started his engine. They provided amazing healing. When he got pandas at age 6 he spit out all of his food for three weeks. At the end of the third week of steroids he just woke up and said "mommy, I can eat again!" His OCD stopped. He was back to himself. He got his tonsils out this summer. Had a horrible pandas episode. Had a four week taper. He is 120%. Personally, I think the build up of steroids take some time. You notice small little changes and then bam! recovery. Then, they just get better and better and better. Things that you never even really noticed were a problem were gone and this beautiful child emerges. Steroids are key. I do not understand why more doctors are not using these all of the time. This is where there should be a study. Antibiotics, I do not believe are the cure. Antibiotics are important so your kid doesn't get strep again. My pandas children always improved with antibiotics but the engine only started with steroids.

 

Next time you see your pandas doctor, if you decide you want to go down the pandas route, ask for a steroid taper.

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I have not read all of the replies to this post. Mostly just skimmed them. Here is my 2 cents...

 

I don't understand why steroids both oral and iv are not standard treatment for pandas kids. Steroids are cheap, cheap, cheap and they work. My 7 year old has been on two steroid tapers. Those tapers saved him. The antibiotic killed the infection and kept him from getting strep. The steroids jumped started his engine. They provided amazing healing. When he got pandas at age 6 he spit out all of his food for three weeks. At the end of the third week of steroids he just woke up and said "mommy, I can eat again!" His OCD stopped. He was back to himself. He got his tonsils out this summer. Had a horrible pandas episode. Had a four week taper. He is 120%. Personally, I think the build up of steroids take some time. You notice small little changes and then bam! recovery. Then, they just get better and better and better. Things that you never even really noticed were a problem were gone and this beautiful child emerges. Steroids are key. I do not understand why more doctors are not using these all of the time. This is where there should be a study. Antibiotics, I do not believe are the cure. Antibiotics are important so your kid doesn't get strep again. My pandas children always improved with antibiotics but the engine only started with steroids.

 

Next time you see your pandas doctor, if you decide you want to go down the pandas route, ask for a steroid taper.

Sorry...I disagree.

 

How can you tell if you are dealing with a true PANDAS (strep only) case? throat cultures, aso/dnase, Cunningham's test, tourettes, = there is no definitive way. And even if you are dealing with a PANDAS (strep) case, I still feel steroids will be helpful for some, but not all. I think it depends on many things, like the infection load, were you on abx prior...

 

When my daughter had a PAN sinus infection in 2008, also the beginning of her third PANDAS (or PANS) episode, she was placed on 7 days of steroids and 21 days of Augmentin. After a slight flair of the PANDAS symptoms she was great. It put this episode into remission (or 90%).

 

Then 7 months later she was in another PANDAS (or PANS) episode. Her ped did a round of Amox & Duricef (duricef put her 2nd episode into remission) with no affect. A month later we did a 5 day steroid burst with Dr. k and it made my daughter psychotic. I was about to have her admitted to the hospital when I called my daughter's ped and put her on speaker phone. The ped told me they would most likely take her from me for 4 days which terrified me. My daughter was running around screaming and banging her head into the walls because her OCD (steroid increased it) was driving her crazy. Fortunately, in the midst of my dd's screaming and crying, the ped heard her small cry "please mommy help me - don't send me away" and was able to diffuse the situation. After an hour of sobbing, she fell asleep. Meanwhile, I started with severe chest pains and had to go the doctors. I thought I was having a heart attack. It was just from all the stress.

 

Why the difference in outcome from the steroids? Dr. K said that sometimes the second one is no longer successful? Again, the first one was given for a sinus infection, not PANDAS.

 

Plus, I was told after the steroid burst that my daughter was "classic" PANDAS, but 14 months later we found out we were dealing with Lyme as well, so steroids would not be in her best interest. Of course, I would use them if absolutely necessary.

 

Anyway, I just think every case is different, PANDAS or not. My opinion though.

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Philamom - I agree with you. My line of thinking was for pure pandas cases only. And you are right, every case may be different. That is why I think a study should be done. Co-infections, Lyme disease - that complicates everything in terms of steroid use.

But I don't understand how you can figure out who is a pure pandas case! -- until there is a test, I guess. (I'm not talking lyme,mycoplasma,exc) So many don't have positive throat cultures or rise in aso/dnase, so do you go by clinical picture? But then my daughter was coined "classic pandas" by her clinical picture before we found lyme. You can't go by Cunningham's labs -- my daughter was elevated in every marker.

 

Not starting an argument - just thinking out loud. :-)

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Cunningham's labs.....i also don't think it's specific for strep-pandas. I think cytokines are released from any insult causing inflammation, thus rise in CamK??? Or something like that. Lyme can do it, so why can't something else too? It just seems like one doc will get on something....like myco p...and now everybody has myco p testing done. I still don't know that I believe having elevated myco p titers means ACTIVE infection. I think it means there at least has been an infection, that may have cleared. I too agree that while in some cases antibiotics and motrin are the solution, it makes no sense to me in relation to this being an autoimmune issue, why that would work. Antibiotics and motrin have done nothing for us. Even after confirmed strep 5 weeks ago, Keflex ratcheted the tics back a tad to the normal....still VERY MUCH THERE...tics....and now while still on keflex, she is ticcing every single blink..... I think Lauren "sneezing" was noted to sneeze 12,000 times a day. WEll, I did the math, and with the rate dd is blinking, it's about 72,000 times a day. All of a sudden. Makes me scratch my head. Is it the wound on her knee healing? Or just wacky immune? Or heck, I've even entertained the thought that b/c she's been on keflex so long, that yeast has come to a head, and maybe that caused the overnight explosion. Definitely not one-size-fits-all, and that is very frustrating when trying to make decisions. I still can't even say that we have had "episodes." It was more like: germ ocd.....two years later....added a few tics....few months later......explosion of tics, separation anxiety, horrible drawing.........now sep. anx. is better....germ ocd replaced with tapping/evening up.....tics go from all day every day, but some might not notice them is she is "involved, focused, playing hard,etc." to now the blinking to make me almost have an anxiety attack......

 

So how do I really truly know it's not tourette's? sigh.

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eljomom- I meant to respond earlier to your post (sidetracked) about your daughter's knee - it is possible that could be behind the increase of tics (blinking) right now, even if doesn't look infected. Could have provoked an immune response. I know my daughter reacted with an increase of symptoms a while back when her earring got embedded in her ear. It didn't look too bad but it stirred up some symptoms.

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Philamom - I agree with you. My line of thinking was for pure pandas cases only. And you are right, every case may be different. That is why I think a study should be done. Co-infections, Lyme disease - that complicates everything in terms of steroid use.

But I don't understand how you can figure out who is a pure pandas case! -- until there is a test, I guess. (I'm not talking lyme,mycoplasma,exc) So many don't have positive throat cultures or rise in aso/dnase, so do you go by clinical picture? But then my daughter was coined "classic pandas" by her clinical picture before we found lyme. You can't go by Cunningham's labs -- my daughter was elevated in every marker.

 

Not starting an argument - just thinking out loud. :-)

Philamom, you are right that PANDAS is just a clinical diagnosis right now. The thing that really stinks, is that it can also look like so many other things so the likely hood of being misdiagnosed is really good...probably depending on what specialist you see, and what they are most familiar with treating.

 

The only thing that makes me say my daughter is a pure PANDAS case is hindsight. Every one of us takes a leap of faith when we follow a doctor's orders, it's only when we see success, can we be sure we've done the right thing. If my daughter was still struggling, I would turn over every rock to see how I could help her.

 

Eljomom, you have peeked under the known rocks, and are struggling to decide which rock to actually turn over. From reading your posts, may I humbly make a suggestion?...Turn over the rock that has the least potential side effects, since that seems to be your main concern. IMHO, that would be to pursue and rule in/out Lyme. What is going to happen, if you see an LLMD? I'm not really sure because I know very little about Lyme, but my guess would be more tests, and antibiotics and some supplements. That course of action sounds rather benign to me (but I could be completely way off on this). If you are concerned about being taken advantage of, then perhaps another lab? I think MDL is a well respected lab.

 

http://www.mdlab.com/

 

If you don't see improvement with Lyme treatment, than you can add that to your hindsight.

 

((hugs))

Edited by Kayanne
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