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


eljomom

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I think my frustration is that, in over a year, we have really done almost NOTHING to even "rule out" pandas. Augmentin for a month did not help at all. Zithromax on a super-low, non-treatment dose (of which I asked the doctor on 3 different occasions if the dose was high enough and was told "yes, should be enough"). Then the run around....INfectious disease. ENT. "Don't change a thing....don't pay attention to the tics when looking at healing"----SERIUOSLY?!?!?! So we have not been offered IVIG or PEX. STeroids were mentioned once, but I felt we needed to rule out underlying infections first, which got us sent to infectious disease, which got us to "take bleach baths." So it's not that pandas treatments haven't worked.

 

Where did you hear about the lab you mentioned? How on earth do you get a doctor to order from there?

 

 

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))

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eljomom-

 

Here is the deal. Most of the docs that treat pandas have a specific protocol. They are mostly similar in that it is a clinical diagnosis (it's hallmark would be a sudden onset- meaning over a few weeks- of a variety of behaviors- you would be lucky if you were able to link this with strep infection, although many can't because they were asymptomatic for the strep). If your child fits this picture, they will try pandas treatments, in order of most benign to most risky. This means an antibiotic trial, and then a steroid burst/taper. Both of these treatments are RELATIVELY benign. Both of these medicines are given every day to children for a whole list of other illnesses. Both of these meds have been around a LONG time. Yes, all medications (including supplements, frankly) have side effects and it is ultimately up to you to review and decide if you are comfortable with the risk vs reward. Depending on the effectiveness of these, which may help to further clarify the clinical picture, and also depending on the severity of symptoms, your child may be offered high dose IVIG or plasma pheresis. While I personally consider both of these procedures extremely safe, they are also not without risk, and their risks would be greater than steroids or antibiotics, period. There are literally a handful of docs that will treat your pandas child- the rest of the medical community will follow decade old NIH suggestions, with really no treatment. Each pandas doc treats a little differently, with Dr K and probably Dr B going to IVIG more quickly, and Dr L trying to use steroids as "treatment" more than a diagnostic tool, a little slower to do IVIG and PEX (but she is the only of the three that does PEX). Unfortunately, YOU as a parent need to decide what you want to do, and then go see that doc. Dr B would be the only of the three that would seriously look into lyme.

 

Chronic lyme, much like pandas, is not recognized or treated by the mainstream medical community. You cannot just ring up any doctor and get Igenex testing. If that is a direction you feel is valid for your child, YOU need to make an appt with an llmd (there is really no use doing Igenex with a doc that doesn't treat chronic lyme). There are three that come to mind in the DC metro area. There really are NOT middle of the road lyme docs. They are llmd's or they are mainstream. Seeing an llmd and treating for lyme is NOT for the indecisive or faint of heart. If you test and present your clinical symptoms, I will bet you will be positive for lyme. Your llmd will prescribe multiple antibiotics and supplements: things like: bactrim, augmentin, zithromax, tindamax, flagyl, vit D, charcoal, etc, etc. It is NOT easy to give your kids all of these meds, and there are lots of possible side effects. We did it for a while- NO EFFECT- (sure, I was hoping it was a "magic bullet" to cure pandas -if it was lyme- it was not, for us). Some on the forum have posted success with lyme treatment, some have had a really difficult time, but feel they are on the right path, for us it did nothing- while pandas treatments get us to remission. I didn't realize how difficult it would be to give my kid all these meds, without the conviction or proof that this was necessary. (I am an atheist- so not a real easy "believer" in anything...) I was VERY concerned with longer term unintended consequences.

 

It is NOT a perfect world. The fact that you haven't done anything in a year, well, stinks- but it is really up to YOU to take this bull by the horns and decide what you want to do. Your doctors cannot make this decision for you, we on the forum cannot make this decision for you- YOU need to decide what your gut is telling you and do it. There is NO point in seeing a doc, if you don't want to follow their advice. That is a colossal waste of money and time.

 

Thankfully, your daughter is happy. So, for that, I think you need a little perspective. If your child was in the condition that my daughter was, or others on this forum, there would be NO way to wait around for a year. So you should count your blessings that this has not completely debilitated her, enjoy her, make a decision, and see what works.

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dcmom----with all due respect, I don't feel that steroids, in the dosages given in the taper, are "relatively benign." I have had 2 ped's and a neuro at Children's, plus the ENT at georgetown say quite the contrary. In fact, the neuro at Children's said he would give his kid IVIG BEFORE he would do the steroids. the way steroids are given for the list of other illnesses are NOT the dosages given for the tapers/bursts (ie. poison ivy, croup, etc...)

 

Our pandas doc IS following NIH procedures with us. My daughter is mostly happy, although as of the past week, the incessant, nos-stop, unremitting 64,000 times a day blinking is taking a toll. Our doctor seems to treat based on a child's happiness...at least in our case. I, personally, have seen how this illness can take a nosedive in an instant, and have heard how treating sooner rather than later, is optimal, and to me, happiness is only a fraction of the treatment plan. If a child has ocd, tics, trouble drawing, etc. that started after an infection, but is generally happy, they STILL have pandas. I don't see anywhere in the lists of pandas diagnostic criteria where "happiness of chid" is listed. And let me be clear, she is happy in a "hyer" way, but definitely is a PILL if things don't go her way, clothing doesn't feel right, etc....

 

I would be much more inclined to follow the lead of the doctor, if there was a clear lead being taken, and not one thing one appointment, and the next appointment, it's as if we are a different family being seen, with 180 degrees opposite things being told. You are correct...I have waited this long, likely because of following the Lead of our doctor, who says "don't pay attention to the tics," and "she seems happy, stay the course" all the while my dd's tics have not gotten better, nor ocd, etc.

 

dcmom, I truly respect your opinion on this forum, and I hope you will take what I say NOT in a personal attack, but just from what we have experienced. Your girls fit neatly in the strep---severe--exacerbation---remission package, and that is why you have be so helped by this same doctor. From all I have read here, that neat package is quickly becoming NOT the norm for PANS.

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eljomom- I do NOT take any offense- I know you are struggling, and trying to help your daughter, which is why I continue to give my input- which I hope you don't take offense to ( I do feel like I am cranky, and short, lately).

 

While I am not saying your child is not suffering, or that she doesn't need treatment, or that you are not in agony- I guess I am trying to say that perspective has been a BIG help to me. There was one time when my normally happy, outgoing, high achieving eleven year old- hid her face in her hat, hid in a child's tent all day, would NOT let anyone see her face at all, cried for hours, wouldn't leave the house, wouldn't eat anything except breakfast, and frankly- I was afraid to leave her in a room by herself or alone with her sister (her behavior was also somewhat volatile- although she never actually did anything really aggressive- we were beyond concerned about that). In that case, PEX was a NO BRAINER. She had nothing, and was suffering beyond belief, we could not reach her at all.

 

Last year, she had another milder episode. She had lots of ocd- but no depression, actually she was pretty happy much of the time. Since we already had the much worse situation- I was SO thankful for her happiness- because when your child loses EVERYTHING- believe me- you reshuffle your priorities- to just helping them find a little joy in each day. It was a much better situation- but like for you- it was MUCH harder to make a decision about treatment, because the decision is a risk vs reward equation. When your child is debilitated completely- it is easy- do whatever it takes, but, when the child can function in their daily life, and is generally happy, yet far from perfect- the decisions are so much harder- although I guess they should be.

 

I have been to countless doctors, and have not had any concerned about the type of steroids we have done. The main risk with steroid use, is long term usage (which is WAY more than a month). But, YES there are risks to any treatment you will try. And if you feel steroids are too risky vs the possible reward- then I would respect that decision. (I am wondering specifically what the risk is that you are concerned about- is it the risk of increasing tics if your child is TS? That, I really don't know anything about, so I can only speak to general risks of steroid usage).

 

If you are concerned to use steroids because of possible lyme (although most pandas/lyme families on here have done a burst at one point)- then I guess you should see an llmd- and try lyme treatment- see if it works, and if you feel that is the path to be on. If it works- great- if it doesn't, then come back to pandas treatment and try the steroids.

 

 

IVIG, we have not done, and would do in the future if needed. But, I was really concerned about the risks there- which many parents here have been very comfortable with. The risk there is of allergic reaction (very low), some type of organ failure (again amazingly low) and of course that you are using a blood product (again, no real quantitative risk- but more of a risk to what we don't know). There also is a risk with pandas kids of "turning back the pages" or worse, before better- which for us, was the risk we were not willing to endure. I really cannot imagine a physician stating that a month long steroid taper is more risky than IVIG. We did see another neurologist who laid it out for us, and felt we should treat systematically from least risk to highest risk, and this was: IV steroids, IVIG, PEX.

 

I concede, that we were VERY lucky that we caught the strep in both girls. Both were asymptomatic (maybe a couple days of fatigue)- but when the one daughter had an onset of ocd over a few weeks- we had them cultured because we found out about pandas (even though our ped at the time said, they don't have strep, they don't have pandas). I thank my lucky stars daily for the solid strep connection that we had, because it has given me the conviction to be very aggressive with treatment. They both recently had strep again, one asymptomatic again, and another onset of symptoms- thankfully they are in remission now. I am confident they are pandas, however, they do now react to immune challenges other than strep.

 

Have you considered making an appt with an llmd?

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dcmom---totally agreed. If she were that miserable, I would have jumped long ago. But now, as of today, the nonstop blinking is now adding eye-rolling. I am about to go over the edge here! She's had a hard time focusing today, writing is sloppier (can't believe she is writing at all with all the blinking). It is so intense that I can't believe she IS okay?!?!

 

I guess the risks from steroids, other than the ones NMom posted this weekend, do include worsening of tics, rebound inflammation (worse than when started), and the big one, PSYCHOSIS! WE do have family history of Tourette's, and also rheumatic fever, so this is part of my dilemna of swallowing the whole pandas pill or not. Much more common the younger the child is. DD is 7.

 

I am curious who your other neurologist is....I think you are up in NJ, so maybe I know. As for the 3 local lyme doctors in the area, I know of Beals, McCabe, and who else???

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My other neurologist is Dr T- but I have also seen another neuro at a busy NJ teaching hospital (along with an extremely prominent rheumy there)- who are all in agreement with our DC neuro (I will tell you the neuro and rheumy were more reluctant about IVIG/PEX- but totally fine with IV steroids).

 

There is a third llmd in the Towson, MD area- I don't remember her info- but if you call ILADS they will give you her name. For lyme, we saw Dr Beals (MD), Dr Visconti (NY), and Dr Gaito(NJ), and two of the three concurred that lyme was not an issue for my kids.

 

What is the percentage for steroid induced psychosis? What would the prognosis be at that point? These are questions worth looking into. Most meds have lots of scary side effects in the 1% range- that are very unlikely- and if you base your decisions on that 1% I would be surprised if you are doing antibiotics.

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Wendy,

I'm so sorry to read this post from you and I am dealing with some things here so don't have time to read all the responses (sorry), but I wanted to respond... I have felt your frustration as this drags on for your family. I wish there were more I could do or that something would break for you guys on this! In the meantime, you know where to find me if you need to vent.

Sending lots of hugs!! ♥

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