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


eljomom
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I want to apologize to the group, especially to people who are posting in order to find relief, compassion, hope, etc. I feel convicted that I need to apologize for the tone of my recent posts/replies to posts. I am in a bad place right now. A feeling of damned if I do, damned if I don't. A feeling of being alone in a battle field. Marriage is tanking because of pandas. Child is ticcing NONSTOP and it is breaking my heart to watch helplessly, as our only pandas doc has not helped us really.

 

But I digress. I truly do apologize for just being plain old negative, grumpy, maybe even rude. I probably should have just kept my mouth shut and NOT responded at times. Please don't in any way take it personally. I would not be functioning today if I hadn't found this group.

 

Thanks, and blessings,

Wendy

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I feel your pain...and for the record I hadn't noticed any grumpy tone. Just wanted to say that I get it and I'm right there with you! I get so tired of being constantly on alert, trying to make sense of what I'm seeing with DS, trying to stay one step ahead, having discussions with our new family doctor about the right antibiotic (- he's not quite there yet - still thinks Amoxycillin is cutting it when it obviously isn't, but at least he's prepared to support our PANDAS dr...), constantly reading and researching, talking with each of the members of our team, micromanaging... We've had strep in the house and this time we're managing it ok, but my head goes right back to a year ago when we were in crisis. Talk about PTSD!

 

We gotta take some time to look after ourselves. I have some confidence in a Naturopath who keeps me reasonably well and together. I see a psychologist regularly because I need someone who can just listen, who gets it and can offer some sort of perspective. I've developed a network of mums who "get" some of this and I can call up to vent. I find when I'm down I must change the pattern of my day - I walk the dog, I walk to the shops...pull weeds in the garden instead of moping on the computer... Even just doing some house hold chore which I'd rather not do because I feel so down - I have to I make myself do it! And, I feel better for having done it!

 

So yes...I get it. Hang in there - you are not alone. No guilt!

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I hadn't noticed a grumpy tone either, but completely understandable if you have one! This illness takes a toll on families. If you feel especially grumpy- just make a grumpy thread. We'll listen and commiserate.

Sometimes I come here on a bad day and read about other people's victories or successes, and though I'm happy to the core to know there's been a relief of suffering for somebody, I just can't help feeling a little down that my own child is still suffering. But, when we have a period of relief and I get to post that- everybody celebrates that too, even when their own children are not doing well.

We understand...no need to apologize.

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I am really sorry that things are so rough, eljomom.

I know you are having a lot of junk thrown at once. When it rains it pours, doesn't it?

When I have had my worst times-- and there is alot of them-- I find it is EXTREMELY helpful to get away from this forum. Sorry-- but THERE>> I SAID IT!!

we can spend hours (like what I am doing right this very second!) away from our families, lives, laundry, husbands (or wives or whatever) trying to micromanage a bunch of junk that we have no control over, any way.

The best we can do is to find a doctor we trust and then do what they say. If you (I am speaking generally here- not just to you!) do not trust your doctor, there are others. I sought multiple opinions out of frustration. They all have their faults -- my FIL always says "everyone puts on their pants the same way", meaning they are just people, too-- and do not have all the answers, but they are trying to help.

Even as horribly, terribly sick as my daughters' were, at some point (and it pained me to do so) I had to put on blinders to the incredible amount of useful and useless information I could dig up online. I had to STOP looking, at least for awhile. I was making myself more than insane. I had to just follow our doc's sdvice. At times, yes, I felt like we were getting nowhere, and at times we probably were getting nowhere.

At those times, I did not look at the forum for awhile, and just focused on the plan we were on. At the time, there was really no plan, as no pex or IVIG was available and she would not take any medications. We were barely just treading water at that point. I had to focus on living and realizing that ultimately it was out of my hands-- because it was.

 

Maybe you can take a PANDAS holiday. I know it sounds foolish to say that~ but, if you are not getting anywhere with abx, doctor, husband, maybe give it a break for a little bit.

A month, or even just a few weeks away from this is not going to make or break your child--whether it is TS or PANDAS.

I sure hope I did not offend any one here with all of this. Everyone here that I have conversed with privately has been wonderful and we all want the best for our kids. I just know what a terrible drain focusing on the forum & not on our families is. I know because I am doing it right now!

eljomom~ I am thinking of you and praying for you and your family tonight.

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Thanks PowWow. I agree....I have gotten some amazingly useful info. here, but I have also heard the horror stories, negative responses to steroids, ivig, etc., rabbit trails, and I sometimes wonder where we'd be if I hadn't heard that stuff, and had just bitten the bullet and done steroids almost a year ago. Maybe better. Maybe worse. Who knows. I guess for me, we are not a "clear cut" case, so I do have doubts about doing many of the big interventions. At the same time, doing nothing leaves us with strong Tourette's and some ocd. I suppose you are right about trusting the doc. I guess I truly have lost trust with our pandas doc. I don't believe there is any sort of plan, just stuff being thrown at us, and stuff that is 180 degrees different from another visit. I just truly don't know who I will trust. I pretty much know if I go see dr. K, we are going to be told we need ivig. period. dr. b will run a zillion tests, maybe try some abx combos, then will rx repeated ivig. we've been told not to pay attention to the tics as symptoms....they are the "last to go." Well, they are our MAIN symptoms. So in some way I feel like I've had my pandas holiday. We did low, non-treatment dose zithromax for 8 months. No change. I tried to convince myself that tics might go later. I have been sent to Inf. Disease. ENT for NO strep, and small tonsils. It is just frustrating and makes no sense. Trying to trust my doctor when the things we are told is tough. "Pandas kids don't have issues with yeast." "100 mg zith. should be enough." "Let go of the lyme issue......(another visit)....oh, she had some positive bands for lyme...why didn't we retest?" MUST remove tonsils. Hey, helllooooooooo....isn't it pretty common knowledge now that PANS is not just caused by strep.

 

I am sorry to badmouth our doctor. I know this doctor has done amazing things for some people here, and that is awesome. We don't fit neatly in a "exacerbation from strep.....remission from abx.....exacerbation from strep....remission" package, so we're not getting help.

 

So here is that tone I was talking about, yet I can't help myself right now. I'm just being mentally pounded that if we do nothing, we are left with tourette's and ocd. But we are not being offered anything but useless antibiotics for treatment. Once offered steroids, but declined. Have heard too many multiple times that steroids are just a VERY temporary fix, with symptoms coming back, sometimes worse. Wondering if it's a "rebound effect."

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eljomom-

 

I can hear your suffering, and I am sorry. Gosh- pandas is REALLY hard. The hardest part is, the cold reality that, YOU have to be your child's medical director and advocate. It is a sucky position to have to be in, but you need to accept that is what it is.

 

I think you will feel better if you DO something. What does your gut tell you? Was this sudden onset? There was no culturable strep, were there high titers? If you think this is pandas, then you need to treat it. If your child has been symptomatic for a year, yet on antibiotics, and they are pandas, then I would suggest two things: can you try a temporarily higher dose of a different antibiotic. Also, we have found, with my kids, steroids are a LIFESAVER. I know the lyme board scares parents away from steroids- but, if your child is pandas, they probably will need some type of immune modulation. Really, a month long taper of steroids is not considered to be immune suppressive.

 

EVERY time my kids have had a pandas episode, we have needed some type of immunomodulation to fix it. Sometimes steroids have done the trick, have given long lasting remission (until the next trigger).

 

If this wasn't sudden onset, and no evidence of strep- well then, what none of us like to say is- maybe it isn't pandas?

 

If you are interested in testing and treating for lyme, in the llmd fashion (ie- not current mainstream medical protocol) then you need to seek out an llmd, not your pandas doc. Dr B, in MD, is pretty much gauranteed to offer you some type of antibiotic cocktail for lyme.

 

 

 

Maybe the hardest thing for you is that it is up to YOU to make the decision. I know how hard this is on a marriage- believe me it has tested ours- but I think we have come through the other side stronger. DON'T make any major life decisions when you are suffering with a sick child- neither are thinking clearly, Try to agree to table issues for a while until you are on track with your daughter. Frankly, my husband has been great, but in the end, the research, and decisions were mostly mine to make.

 

So I would suggest, take a few days off of the forum. Search your soul. Decide which direction you think is the best (pow pow is right- no ONE person has all of the answers). Stop blaming your doctor for your daughter's illness (you are blaming her for no progress, yet you have not followed her advice- what more can she do?). Decide which direction you want to start with (lyme, pandas, tourettes) and then go full force down that path for a few months, and see if it works. Pandas- antibiotic change up, steroids, possible ivig/pex, Lyme- see an llmd, multiple antibiotics/supplements/meds, tourettes'- tic medication. If after a few months, you don't see improvement, you can change course. None of these Rx's are really that risky, they are all worth a shot.

 

And lastly, I know as much as anyone, that pandas is horrible (both of my daughters have it). Yet- I have also learned (sometimes I am better at this than other times) to put it in perspective. My kids will be fine...yes they suffer, yes it isn't fair, but, I know in my heart that they will be fine- they are strong, and I am strong. There are so many worse situations/illnesses that they could have- that is the reality.

 

I hope this didn't come off as too harsh (I feel like I am sounding harsh on the forum these days.....need to take time away soon.)- but I really think if YOU make some decisions, and pursue a direction- YOU will be better off- and hopefully so will your daughter.

 

BEST of luck...

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Thanks dcmom. Not harsh at all, and nothing you have said surprises me. I am tired of being the medical director. That's why I'm paying thousands of dollars to the pandas specialist. THAT is who is supposed to be directing . WE HAVE done everything she suggested. The augmentin for a month. The low dose zithromax. Ignore the tics. Go to infectious disease. No, we have not pulled tonsils. No we didn't do the steroid taper, because when she mentioned it, I asked if we should test for lyme first, and she said "yes." I'm SICK if having to think this hard. Just because antibiotics doesn't work, to me, that does NOT mean it's NOT pandas. If antibiotics worked for all pandas kids, then surely there would not be this forum. We would all be sailing away blissfully with our antibiotics. Nope, no titers. Nope, no cultured strep. Nope, didn't take her to the doctor for sick visits for over 2 years, during which time the germ ocd started, which I attributed to an annoying, quirky phase from a difficult, strong-willed child. The baby of 4. Who survives days of 104 fevers unscathed. Or so I thought. So sudden? Well, if your child used to eat anything given to them, and then one day the won't eat anything that anyone has touched or breathed near, is that sudden? If your child didn't have tics, then got 3 tics that could also have been attributed to "quirky stuff"---smelling fingers, rubbing hair and scrunching nose, is that sudden? If your child had a high fever for a day, then within a week, developed over a dozen tics, separation anxiety, over the course of a week or two, is that sudden enough? Nope, no titers. Is pandas just strep? Not from what I've read.

 

I'm sorry if I sound harsh....I truly appreciate everyone's efforts to help. I am just not the type that thinks it's just no big deal to put a kid on steroids for a month. Not everyone has had the success you have had with steroids, in fact, from what I have read here, you are the minority. Maybe it's because this forum is filled with people who are really NOT having immediate success with treatment. I don't know. My husband sees her as happy, so he fight against any type of treatment anyways. He (and I) don't want to lose that....her happiness, by trying something that may make her worse. She is pretty happy now, but when the teasing starts, when she gets older, it won't be cute anymore.

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No, she is not the minority. We have had immediate, dramatic results with steroids. Stopped a sudden exacerbation of tics from Pertussis in it's tracks. Went from ticcing a lot to basically nothing the next day. Many just don't post about it, or, have posted about it long ago and just don't want to keep repeating themselves. Also, off this forum, there are numerous PANDAS children who benefited dramatically from steroids. I always have a stash in my medicine chest....if a decent flair ever comes about....I will up the antibiotics and give a steroid burst. It keeps the exacerbation from getting out of control and harder to deal with.

 

I do agree (and I know I have pm'd you about this before) you need to choose a route and go with it. It seems you are looking into pursuing every angle and not really going with any of them. Tonsillectomy and steroids MAY just be the things needed to help your child. Antibiotics worked great for my boys...but, without steroids and tonsillectomy/adenoidectomy, I don't know that they would be doing as well as they are today. You are here looking for advice. I have been at this since 2007 (see my member date) and DcMom has been at this a while and has gone through all the procedures. We do have some wisdom under our belts. We have read it all...seen it all and collectively, done it all. DCMom gives you excellent advice and at some point you are going to have to take someone's advice (whether Lyme, Tourettes, PANDAS) and go with it full force if you want to find out what is going on with your child. One direction at a time! If I were in your shoes......I would do a steroid taper... (this is just what I would do...not meaning to tell you what to do...it is a decision you have to make) If your daughter has PANDAS....you should be amazed at the results. Yes, the frist few days of the burst can be bumpy at first.....but then, dramatic improvement.

 

We are just trying to help you. Choose a course and go with it!

 

 

I read your post again. If antibiotics are not working, and, you say it still means it could be PANDAS (and you are right) then what is your next step if you believe it is PANDAS? If you are not willing to take the next steps for PANDAS treatment, then, your doc is right.....you will have to ignore the tics. Also, if you and your husband are too afraid to try anything else in fear of making her worse and losing her happiness....then don't...again, you will have to ignore the tics. If that is how you feel...what is it you are seeking then? There is no easy way out.

 

By the way...when we went to see out ENT about tonsil removal...my sons tonsil looked just fine...small, not infected, etc. He had no strep issues at that point either. We removed based on our docs recommendations. Anything that can help eliminate (not completely, I know)...but atleast help to eliminate the incidence of strep (our trigger) then do it. (Docs words) Made perfect sense to me! We went for it with the same conditions as you have..but, we had added precautions and risks with my son because of something totally unrelated to PANDAS....we still did it. We are sooo glad those things are gone. When tonsils were removed...the small uninfected tonsils were "very infected with pus in some areas."

Edited by P.Mom
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I just wanted to say that I agree with DCMom and PMom's posts, they've articulated things very well.

 

Also, I wanted to just put steroids in a bit of a perspective. Remember, steroids are not some controversial drug that is only being used in the PANDAS community. They have been in use since the 1950's. Ask your pediatrician, any other numerous specialists (allergist/immunologists, ER, rheumatologists and neurologists) how often they prescribe it, and what are the side effects for a short term use - which a month is considered short term.

 

I, too, believe that steroids are serious medications, and it should ONLY be given under the direction of a doctor. But I have spoken to all of the specialists above and none of them seemed concerned about 1-2 times a year taper.

 

Obviously, EVERY drug/supplement/treatment has potential side effects. It is hard to weigh the risks vs. benefits, but that is what needs to be done. If you are not comfortable with the risks, accepting where you are at is important in moving forward with your life. Whatever direction you go is up to you and your husband.

 

I wish you the best of luck.

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yes, yes, of course....steroids only under the direction of a doctor. I would consult with my boys PANDAS doc before giving my son(s) a steroid burst out of my "stash" :ph34r: ...their weight has dramatically changed since the last time we needed to do steroids and I know the dosage would be different. I don't mess with that. I didn't mean to imply to anyone that I give steroids ramdomly at will. (if I did...sorry) I have actually only given my younger son 2, 5 day bursts in over 4 years....older son never got any steroids. Now, I will be honest and admit that I do up my boys abs from 250 mg once a day to either 250 mg twice a day, or, 500 mg twice a day, (for about 5 days) on my own, if I see a concerning sudden increase....which usually means strep is somewhere. This has worked for us. Is it smart to do without a doctors approval? Heck, I don't know......but sometimes I feel I know what my boys need better than anyone.......and I don't feel an increase in abs is dangerous.

 

 

Anyway...Elijomom.....we do just want the best for you and your girl!!

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yes, yes, of course....steroids only under the direction of a doctor. I would consult with my boys PANDAS doc before giving my son(s) a steroid burst out of my "stash" :ph34r: ...their weight has dramatically changed since the last time we needed to do steroids and I know the dosage would be different. I don't mess with that. I didn't mean to imply to anyone that I give steroids ramdomly at will. (if I did...sorry) I have actually only given my younger son 2, 5 day bursts in over 4 years....older son never got any steroids. Now, I will be honest and admit that I do up my boys abs from 250 mg once a day to either 250 mg twice a day, or, 500 mg twice a day, (for about 5 days) on my own, if I see a concerning sudden increase....which usually means strep is somewhere. This has worked for us. Is it smart to do without a doctors approval? Heck, I don't know......but sometimes I feel I know what my boys need better than anyone.......and I don't feel an increase in abs is dangerous.

 

 

Anyway...Elijomom.....we do just want the best for you and your girl!!

PMom, no, you didn't imply that at all...I was just trying to express that I think steroids are serious medications, yet that alone shouldn't preclude them from being a valid treatment for PANDAS.

 

LOL...I've had pred in my medicine cabinet too. Boy was I tempted to try it on my son, who I think is really mild...but I figured, if he isn't symptomatic enough to make an appointment with our neurologist, then he isn't bad enough to try the steroids.

 

Elijomom....(((hugs))) This is just so crappy all around. You're entitled to be cranky sometimes.

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All well-taken....I know from those posting to my topic, that your hearts are all in the right place. I can take it, and I appreciate it. Honestly, it's like a family in some ways here, and sometimes we don't see the forest through the trees until someone we car about points it out to us. I have thought of most of the things you all said....doing nothing gets us nowhere, etc....

 

We just DON'T have clear cut strep to be our "known trigger." My dd also tics mostly, and I'm not sure if kayanne, P.Mom or dcmom....if your kids tic ALOT?? But if I were only dealing with OCD I would have tried steroids by now. Dr. L only brought them up at the one appointment, and after I asked about Lyme, it hasn't come up since. She reads the notes. She knows what we have done/not done. She isn't shy about suggesting some off-the-wall treatment (like pulling tonsils of a kid with no known strep, no titers, small tonsils, etc.). In her mind, during the 2 minutes she sees my dd at appointments (we don't bring her back for the rehashing of it all), dd sits still, hardly speaking, moving, breathing, probably fearing the needle or swab coming out at any time. Dr. L sees that and says "she seems happy." So I think that is a HUGE part in whether a child is offered certain treatments.

 

I truly think if steroids were the "preferred treatment" for pandas, NIH would be doing a research trial on just that....steroid tapers for pandas. It would be a heck of a lot cheaper and quicker. but they are not...they are trialing IVIG. And part of me thinks they are trialing IVIG b/c it is "less invasive" (ie., people are more likely to do something like IVIG,where they might go through the procedure and only get placebo, than PEX), and because it is "cheaper."

 

But back to steroids and tics....steroids increase dopamine, dopamine increases tics. That is a known fact. Even the ENT at Georgetown we saw, when he mentioned that during surgery they give a bolus of steroid, and I mentioned my concern...he said "You know what, that is a really good point. I really need to rethink that for my pandas patients who tic. In fact, it's even been shown that steroids can cause psychosis in young children."

 

I do appreciate everyone's input here, and am open to hearing any more from anyone who would like to send it.

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I know how you feel - it is so frustrating to watch everything fall apart. So sorry you are in a bad place right now. You were very brave to extend apologies. I had not noticed anything, and from the sounds of it, no one else really did either. It is completely understandable to be angry when all is going wrong. I truly hope things get better for you and for all of us. It is lonely and I don't know where I would be without this group, because I get absolutely no support from my Husband, so I kind of know how you feel.

 

Good luck

 

Rachel

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