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I think I may give up


eljomom
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We've been at it for more than 2 years and things aren't perfect . . . yet. But they are night and day away from where he was at his worst 2 years ago, and he continues to make small but measurable gains, almost on a daily basis. Most importantly, though, today he's HAPPY again, and so DH and I are happy again. And relieved, and grateful, and cautiously optimistic, and knocking on wood with nearly every breath.

 

MomWithOCDSon, You've hit the nail on the head here. In eclairuse's thread, the intention of the parents who posted was to stress the importance of early treatment in order to relieve the family's suffering SOONER. If you know about PANDAS very early on, then it has been my experience (and others) that relief can can come as early as the end of a 10 day course of antibiotics or a month of prednisone. Sadly, for those children who go a long time without a PANDAS (or even Lyme) diagnosis, the recovery is longer and more involved.

 

Elijomom, this is what was being put forth in the other thread. I'm sure no one who has posted on that thread feels that giving up is what you should do.

 

Obviously, this is all my conjecture from my experience with Dr. L -- but I just want to say that she believes that PANDAS is an AUTOIMMUNE disorder, triggered by infection. If there is no evidence of ACTIVE infection, she is not going to prescribe full-strength antibiotics. She told me this is "immune-mediated". It, therefore, makes sense that she will want to move on to immune therapies.

 

Her first line of treatment is steroids. The first time she prescribed them to my daughter (and only 100mg of azith daily) she told us that if we don't see significant improvement by the end of the month, then we would need to consider moving on to the other heavier treatment such as PEX or IVIG. Now, this is just an assumption of mine, but I would venture to say that she tries everyone at steroids first. She's just not going to skip an important step in a treatment protocol. One that is cheap, and has a relatively good chance of actually being the only treatment needed. I think this protocol makes MUCH more sense than a doctor who will diagnose a child as having PANDAS, and insist that they go right into IVIG. Using, a cheaper less invasive treatment approach is acceptable in all kinds of diseases and disorders, why should PANDAS be a IVIG/PEX "only" treatment protocol?

 

I'm curious if there is anyone who can report that she didn't try steroids first, but moved them right into the heavier treatments?

 

I also want to point out that I think Momofgirls had an excellent observation, about your daughter's negative reaction to Augmentin possibly being Lyme.

 

(((hugs))) and prayers

Edited by Kayanne
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Dang phone..... Sorry. I know you are Eljomom. I also wanted to say that you yourself have said your daughter is happy. You should be grateful for that.... Many on here have raging , depressed, suicidial, amxiety ridden, homebound kids. But they don't give up! No... We fight like ###### for oír kids.look at your daughter and imagine telling her you are ready to give up on her! And we all wish we did not haveto play doctor... We all wish thinhs were different. Wishing gets you nowhere.....like i said.....time to step up to the plate!

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Hi Eljomom-

 

I have to agree with Pmom here.

 

I have posted and emailed fairly extensively to you- and I hope I am not being offensive- because I take the time to post because I care, because I don't want families to suffer, and because I know the suffering of pandas too well.

 

I was really bummed when I saw your post this morning. It felt kinda like groundhog day. Everyone here, certainly deserves to feel a little self pity and grief, but it is time for you to get it together. Don't post, and not try to take in the advice given to you. THere are a lot of amazing parents here, taking their time to give you advice- yet I feel like you don't absorb it at all, and week after week you post the same thing.

 

You are blaming docs, the healthcare system, etc for your daughter's failure to progress. While in a perfect world, pandas parents would get WAY better treatment. BUT, it is not a perfect world. Things are how they are right now. We can and should work to improve things- but cannot do that by giving up, and feeling sorry for yourself.

 

This is how it is: PANDAS is "new", there are only a handful of docs with any experience treating it. They are trailblazers. They are human, far from perfect, and each has their own issues. BUT- go to any other doc, and I can tell you, your child will be completely dismissed. They have to rely on their limited experience, and the very limited studies, in order to treat our kids.

 

I understand you are not happy with your pandas doc. I see the same doc. I know their are communication issues. But, being angry is not productive. Some parents will decide to move on to another doc if they run into this issue- maybe try that. What I do, is be sure that I have whatever I need when I leave the appt, until the next appt. I schedule follow ups, and cancel if we don't need them, but try to always have something on the books. I decide to realize what the weakness and strengths of each doc we see is, and make it work for us.

 

Also, you have repeatedly decided not to follow this doc's advice- certainly your perogative- but then why continue down this path? She wanted tonsils removed (extremely reasonable for a pandas kids, case studies support it, and many anecdotal stories of kids on the forum whose tonils end up being very infected, that wasn't seen on exam). Also she recommended a steroid burst, which you also declined. What more can this doc do? You will not be offered pex or ivig with a very mild case, without trying less invasive procedures first.

 

You want her to test with Igenex. This is not a test sanctioned by mainstream docs. If you want this, you need to make an appt with an llmd. There are a few in your area.

 

I agree with Kayanne about her assessment of Dr L treating pandas as an autoimmune disorder. This is how it is described by the NIH. This has been our experience with our two girls. We have needed to use immunomodulation (steroids in one form or another, or pex) to put a stop to the autoimmune process. We don't have underlying illness, and any attempts to look for these have found nothing- and have been wastes of time and energy for us. When we are able to properly address the autoimmunity, my kids go into remission- until the next trigger.

 

You need to look at your child's picture. What do you think in your gut? If you feel this may be chronic infection, like lyme, or something off of the mainstream radar- then make the appt with the llmd. If you feel this is pandas, maybe it was sudden onset, tied to illness, but in all other respects your child is "healthy", then either listen to your pandas doc, or find another. YOU need to choose a course and pursue it. The good news is that neither direction precludes you changing your mind a few months down the line. No direction, pursued for a few months, will cause lasting harm to your child.

 

Not doing anything is going to drive you crazy. You will feel better with a plan.

 

I really wish you nothing but the best. I have been down this journey with both of my daughters, and though they are well now (and we have all been through a lot), I live in a constant state of fear (that I try to push down) of a future

 

The other thing, I will echo Pmom is- perspective. It REALLY helps to get perspective with pandas. Our kids are not terminal, and they will grow up to live productive, healthy lives. Not all parents can say that. The other thing is, you seem to get irritated when a Dr or a parent says your child is happy. I REALLY have to say, do not take that for granted. My kids have certainly not been the most severe- but both have had two weeks in the past two years where they were: not eating, extremely depressed, did not want to live, would not leave the house, cried most of the day. After that, I can tell you our priorities changed. Finding some joy (and in those days it was very hard to do) in every day is our priority now, EVERYTHING else is icing.

 

Good luck!

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Philamom---thanks so much. That is very kind...I remember offering the same thing when I first started this forum for people traveling to Dr. L.....it would be nice to meet another family, rather than stare dreamily at all the people with kids who just flit from here to there, unphased, not ticcing, tapping, sniffing things..... :)

I'm so sorry for your sadness! I can really sense the despair in your post. I suggest an appt. with Dr. B in CT. I think he would be good to help you figure this out.

 

I'm opening up my house to you (Philly Suburb) if you would like to stop here or stay overnight. His office is another 3 hours north. SERIOUSLY! My daughter would love the company of your daughter. My daughter really looks forward to meeting other kids when shes at Dr. B's center. She loves everyone - kids with tics, compulsions, screamers - she doesn't mind - if you play with her she's happy.

 

I would really consider another opinion!

 

edit- I also would argue for an abx rotation or stronger dose. Zithromax at 100mg is too low.

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Eljo: I PM'd you with everything I got. There is much more that can be done for your kiddo. I have had a son that, off and on for 2 years awakened in the morning screaming and crying, treated me like poop on a daily basis, went thru weeks off and on over those 2 years hitting or kicking me sometimes up to 5 x a day and basically argued with everything. Getting clothes on in the AM was such a struggle on a daily basis - never mind trying to brush his teeth even 1 x day or even eating a decent meal. Basically everything I asked him to do was met with opposition and severe irritation. It was ###### and I felt like giving up many days - I was negative and a real downer around my peers. Well, that seems like a bad dream to me at this point. I never know if I am going to awaken one morning and randomly, the PANDAS beast will be back. I hope with all of my heart that we have beaten it. But the bottom line is that I have worked like a dog and travelled like a hobo and sold important family heirlooms and wormed my way into PANDAS Dr.'s offices, refusing to take no for an answer because I will not ever give up on my son. And guess what? It's paying off! He is happy as a clam and hanging out waiting for his chicken nuggets on my bed right now. No twitching, tics, hyperactivity, irritability - in fact, he just spontaneously told me he loves me...for about the 10th time today. Time to get up that hill and start kickin' it hard, Girl!

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thanks smarty---those are wise words. and you are so right, I've dug myself a hole at times. I may have jumped along the way, but then hear something that makes me think twice. I know my options are pretty much to a) do nothing...accept it like it is. that one is just not sitting well with me. Had it been a different type of onset, with different health history, maybe. B) push for steroids, IVIG, or PEx....which may help, or may not, or may make worse (from what I seem to be hearing more and more), or c) go the Lyme route, which I have serious reservations about. or d) take an alternative course, which often sounds like replacing one worry with another. Replacing brain inflammation for gut inflammation, strep for yeast, etc... It's all the possiblity of doing more harm than good...what is the long term risk of IVIG? on their immune system? blood product? PEX= could be death. Steroids, worsening, a band-aid, etc. I understand everything has risk, but this risk involves my BABY, her health, well-being and life. I would DIE if I tried something and made her worse. I already lose sleep for all the times I didn't take her in for sick visits, etc....

 

I am hopeless. I am paralyzed.

 

 

eljomom -- i certainly don't want to offend you -- i do feel your intense struggle -- however, i don't think your immediate problem is what to do with treatment for you daughter -- i think it's your frustration, confusion, hopelessness and feeling of being paralyzed. we can all share that -- maybe not to the same level, but the same feelings. the more you post asking for thoughts and opinions, the deeper hole you're digging b/c we all have our different stories, theories, successes and failures.

 

aside from pandas, the past year has been difficult for us (not to the level of when a child is sick and you don't know what's going on -- i get that, i've lived it too) -- but with our house on the market for 14 mths, decisions about where to school, - return to private that had troubles, to homeschool, go to a sub-par public, my need (finanically and mentally) to go back to work, etc. then in june, the house sold and us w/o a house to move into -- so, do we stay with parents, buy quickly, spend too much, do something temporary with possibiltity of switching school mid year -- etc. all with huge questions about what is best for school phobic ds7.

 

here's my advice:

 

obviously, i don't know anything about your religious beliefs -- use whatever, God, higher power, etc. that is right for you.

 

make one list of all the possible choices you have with investigating/treating/accepting as they are, your daughters symptoms.

 

then -- make a daily list of the things you need to accomplish in your life that you can reasonably complete that day, on the right of the page or book, and be sure to check them off when you complete them. then, on the left, make a list of the things you cannot decide or accomplish on yor own and ask for help in direction for those things. be calm and confident that you will somehow be lead in a good direction. it may not be the ultimate direction that will give you all the answers -- but pay attention and i think you will see some direction.

 

as rough as this pandas journey is, i have been amazed at times that a short conversation or chance meeting or tidbit of information has lead me somewhere that has been helpful.

 

good luck!

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Thanks Kayanne-

I think the problem I am having is that I am still not convinced there is NOT active infection going on in some way....but Dr. L won't test for anything but lyme, myco p and strep. I'm not, and have not been, comfortable just saying "well, titers are normal, so there's no active infection" nor am I okay with NOT testing for viruses, etc....even though we may not "give anti-virals." The more we know, the easier it is to make the right decision.

 

I agree that this is an immune-mediated, but feel that steroids are a temporary band-aid, while IVIG or PEX may somehow reset the immune system? I may be totally off here on this one. We wanted to wait on steriods for Lyme testing, and wanted to rule out other active infections before starting steroids (which I think isn't unreasonable) and she sent us to infectious disease, which was a waste of time, money, and emotions...thinking we may get somewhere. Since then, Dr. L has been on the strep trail...removing tonsils is her "treatment du jour" it seems lately from postings on here and speaking to a few other parents. I am not comfortable putting all my eggs in that basket, when I feel that strep quite possibly may have had very little play here with dd. So no steroids for us, no IVIG, no PEX. My daughter appears "happy" (meaning not freaking out) in the office for the 2 minute look-over, and so we just slog along. Trying to "ignore the tics."

 

I also think maybe the people who benefit the most from steroids are those who receive them quickly after starting an "exacerbation." I can't believe for a minute they would be the golden egg, after years of symptoms in hindsight. We are CHRONIC....and that's the part that gives me pause....

 

 

We've been at it for more than 2 years and things aren't perfect . . . yet. But they are night and day away from where he was at his worst 2 years ago, and he continues to make small but measurable gains, almost on a daily basis. Most importantly, though, today he's HAPPY again, and so DH and I are happy again. And relieved, and grateful, and cautiously optimistic, and knocking on wood with nearly every breath.

 

MomWithOCDSon, You've hit the nail on the head here. In eclairuse's thread, the intention of the parents who posted was to stress the importance of early treatment in order to relieve the family's suffering SOONER. If you know about PANDAS very early on, then it has been my experience (and others) that relief can can come as early as the end of a 10 day course of antibiotics or a month of prednisone. Sadly, for those children who go a long time without a PANDAS (or even Lyme) diagnosis, the recovery is longer and more involved.

 

Elijomom, this is what was being put forth in the other thread. I'm sure no one who has posted on that thread feels that giving up is what you should do.

 

Obviously, this is all my conjecture from my experience with Dr. L -- but I just want to say that she believes that PANDAS is an AUTOIMMUNE disorder, triggered by infection. If there is no evidence of ACTIVE infection, she is not going to prescribe full-strength antibiotics. She told me this is "immune-mediated". It, therefore, makes sense that she will want to move on to immune therapies.

 

Her first line of treatment is steroids. The first time she prescribed them to my daughter (and only 100mg of azith daily) she told us that if we don't see significant improvement by the end of the month, then we would need to consider moving on to the other heavier treatment such as PEX or IVIG. Now, this is just an assumption of mine, but I would venture to say that she tries everyone at steroids first. She's just not going to skip an important step in a treatment protocol. One that is cheap, and has a relatively good chance of actually being the only treatment needed. I think this protocol makes MUCH more sense than a doctor who will diagnose a child as having PANDAS, and insist that they go right into IVIG. Using, a cheaper less invasive treatment approach is acceptable in all kinds of diseases and disorders, why should PANDAS be a IVIG/PEX "only" treatment protocol?

 

I'm curious if there is anyone who can report that she didn't try steroids first, but moved them right into the heavier treatments?

 

I also want to point out that I think Momofgirls had an excellent observation, about your daughter's negative reaction to Augmentin possibly being Lyme.

 

(((hugs))) and prayers

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P.Mom...see my reply to ....gosh, I don't even know who's post above, about the difference between stepping up to the plate and swinging in baseball, and swinging on my daughter's life.....she could get WORSE from treatment.....and I'd never let that die.....I am not taking offense...I can see why you would say what you did, honestly. There are just too many things that would be easy enough to look at, and rule out, and I would feel more comfortable taking a plunge. But I can't get answers, certain testing, such as the stinkin' c3D....or EBV, for crying out loud....

So, next step is where to go next. Clearly, after asking out pandas doc if we can change to high dose zithromax, or something, and cannot get a reply, I am done.

 

Eljpmpm......really..you are ready to give up without even REALLY trying? Come on! You did antibiotics.....that is it. There are several other PANDAS treatments you have not touched. Some where even suggested to you and you won't do them. I will put it like this......when my boys play baseball and they step up to the plate.....we always tell them....."if you are going to go down ( strike out)....go down swinging.". Eljpmpm.....time to get off the pity train....time to quit finding excuses and blaming others....time to quit being afraid to try. Time to step up to the plateand start swinging........if you are going to go down.....go down swinging.... don't go down watchingthe ball go by. Your daughter deserves it. Sorry if this upsets you or anyone else.....but someone has to light a fire under your $$$!

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dcmom---I appreciate the time you have given me. Please understand when i say this, that I am not angry with you, but just trying to explain my situation is VERY different from many on here. You have a "classic" case of pandas. Major exacerbation after known illness....debilitating, antibiotics help, immunemodulating helps more. You don't have tics. You have ocd. You don't have a family history of BOTH Tourette's/OCD AND Rheumatic Fever.......complicating things. Yes, I have a child who is "happy" in the sense that she has happiness in her days, WHILE she is ticcing ALL THE TIME, tapping, evening up, etc....but yes, she has happiness each day. She also has unhappiness every day too....when she gets frustrated, it's not just "miffed" but it's an unreasonable response. But this has been going on for years. I DON'T have clear cut beginning point with all of this....just the hindsight that I had a kid who was always sick, who was a pain in the a$$, clothing bugged her, germaphobe...but never a clear-cut pattern with relation to illness. Until the big tic-fest started after the high fever....which has never left. I have been told that TS can be like this too. So my case is different. I don't want to pull the trigger until I am certain, or more certain, that i should even BE trying to modulate my dd's immune system. I know if I go to Dr. B or Dr. K, they will offer IVIG. So I don't go, because I don't want the "one size fits all" treatment protocol.

 

I'm sorry if it's seeming like one big pity party. I want NO PITY....none whatsoever.

 

Maybe this isn't the place for me, if me not jumping into the deep end and calling it "going down swinging" makes me pitiful. I put all my eggs and $$$ in one basket with the so-called TOP pandas doctor, and we have ONLY been offered rabbit trails. The one time steroids were mentioned, I simply asked if we should test for Lyme first, and was told, yes, of course. I am tired of being the one thinking of those things. Steroids have not been offered since, only this or that specialist, and tonsillectomy. So if immune-modulating is the key, why the tonsillectomy for a kid with no strep, and small tonsils? This is not protocol of the other specialists, so.....anyhow, forget it....NONE of us (that I know of) are doctors here, we are just parents plugging whatever worked for our kids....which is great...it gives options. But I am NOT sure, still, that this is even pandas at this point....with no letup in symptoms.

 

I understand if nobody responds to my posts anymore....I know I have used up my fair share on this forum.

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Also wanted to say that, given our family history, what are the chances this would really be Lyme? We've got TS/OCD AND RF.....so the chance it would be Lyme?? And my 9 year old ticcing/touching/tapping worse same time as my "pandas" dd?

 

I think you are missing a very key point with your line of thinking as quoted above. Most parents on this forum, despite differential diagnosis of lyme, pandas, tourettes, OCD, and RF etc...would agree that each of the discussed illnesses have some sort of underlying immune disfunction triggered by infection. For some it's strep, some it's much more including lyme. You keep talking about your family history of tourettes and OCD versus pandas. It's the response that is genetic not the infection. So yes you could have Lyme disease causing your tourettes. Do you really think they are all so different? Do you really think it's one or the other? What are the chances Lyme is a factor? Highly! I am just suggesting that an infection, especially a combination of ugly chronic ones are causing what you know as tourettes.

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Aaah--okay, thanks momofgirls....I think something you said may have just let me see the forest through the trees. "It's the response that is genetic not the infection." So my father-in-law definitely had an autoimmune response to strep (his mother died in childbirth while delivering his younger brother, so noone knows his symptoms, and he has been dead almost 40 years). Maybe my brother has Tourette's and OCD because of a response to an infection? But still has Tourette's? Ugh...I thought I had it there for a minute, but I think I see what you are saying. I do think there is infection here.... 2 of my girls who share a room, and are together all day every day (homeschool) are on a very similar tic/ocd profile the past few months (albeit, my older one is not seeing a doctor....yet). Seems to be more of a "contageous" infection if you ask me.

 

Also wanted to say that, given our family history, what are the chances this would really be Lyme? We've got TS/OCD AND RF.....so the chance it would be Lyme?? And my 9 year old ticcing/touching/tapping worse same time as my "pandas" dd?

 

I think you are missing a very key point with your line of thinking as quoted above. Most parents on this forum, despite differential diagnosis of lyme, pandas, tourettes, OCD, and RF etc...would agree that each of the discussed illnesses have some sort of underlying immune disfunction triggered by infection. For some it's strep, some it's much more including lyme. You keep talking about your family history of tourettes and OCD versus pandas. It's the response that is genetic not the infection. So yes you could have Lyme disease causing your tourettes. Do you really think they are all so different? Do you really think it's one or the other? What are the chances Lyme is a factor? Highly! I am just suggesting that an infection, especially a combination of ugly chronic ones are causing what you know as tourettes.

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P.Mom....now I've clearly offended you....that was not my intention. I am sorry if you took it that way. I do understand your baseball anology....but we are not all walking in the same shoes. Our case is more complicated and less clear-cut than many on here...that's all. And I also have another roadblock that I don't mention on here much......my husband (not "blaming"....but...) is VERY VERY VERY VERY against anything aggressive. So my "hands are tied" truly here. He has said at appointments that he doesn't want to "do anything over the top"---so unless someone somewhere....be it a parent on this forum, or a doctor, or god-forbid she goes downhill.....can convince him otherwise, I am "paralyzed" in more ways that me just not "getting off the pot" so to speak. So I come here, in some ways, hoping for the golden egg I can present to him. Someone who knows something, or find a doctor who will tell it like it is to him......that one nugget of information someone earlier posted.....that might change his thinking.

 

Geez....the baseball thing...,,it was an analogy! Best wishes to you and yours , Eljomom.

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Of course it could be something the kids are passing around but don't you think you would have found more in the blood work already run? Your daughter has been on zyth a long time with no improvement. She got worse on augmentin. On the Lyme board we call that a herx. Didn't you say your kids have bitten by ticks maybe even multiple times? Her Lyme test results were very borderline. If you went to a Lyme doctor you could try a combination of antibiotics and watch for a herx then maybe even re-test to confirm. Maybe even go see Dr b as Philamom suggested. I'm sure based on your daughters symptoms and igenex results he would be willing to try Lyme treatment. He takes insurance and won't send you away with a tourettes diagnosis. Then if you confirm Lyme you could see a local Lyme doctor for treatment. I push you in this direction because pandas treatment has not been successful alone for the kids with Lyme. I don't think steroids or ivig will be much help if Lyme is still driving the immune response.

Please guys don't throw stones for saying so! I don't get joy from of telling people I think their kids have Lyme.

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