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I have been reading all the recent posts about quickly treating pandas. I did not. I did not know of pandas when my dd started to not want to eat anything that someone had touched at around 4-5 years of age. Germaphobe. I did not know of pandas when my dd also had (has) major issues with clothing, shoes, socks, underwear, armpits of shirts, etc. I did not know to look at her MANY illnesses and correlate them with her ocd-ish stuff that I chalked up to quirks, difficult kid, youngest (ie., spoiled/babied...). When the 3 tics started, I did not know to link it to illness. When I didn't take her in for 104 fevers over the course of over 2 years, I did not know about pandas. When there was a one-day high fever, and within a week of it, an explosion of tics, head to toe, increased separation anxiety, more ocd, I thought we had a sudden onset of Tourette's. My brother has Tourette's. My father in law had rheumatic fever. I did not know of pandas.

 

After a few months of thinking my kid that I thought had a few transient tics had suddenly just taken a turn for the worse and developed Tourette's, I hit a link on pandas. I researched. I tried the pediatrician. I finally found one to test titers, 5 months later, and they were nonexistant. Not pandas, I was told. I found the forum. I had phone consult with dr. T. I had a 6 month wait for a neuro. at Childrens. I had a 3 month wait for Dr. L.

 

We started abx with Dr. L, while waiting on Cunningham's tests. She as not certain about pandas. DD sits still in her office for 2 minutes she is seen. We get worse on Augmentin. Is this now NOT pandas? we wonder. or were we just too late? too late to have the wonderful relief of abx? We switch to zithromax....100 mg/day. Not even treatment dose. We ask about dosage at 3 consecutive appointments. We are told "it should be enough." We are told to NOT pay attention to the tics...they are the last thing to go, and they are no big deal...easy to treat with drugs. we tested Lyme. "negative" but a number of +s and IND"s. Many say "pursue Lyme." We are told by pandas doc to let it go, and if we see an LLMD, we would no longer be seen by this pandas doc. We question testing other infections, immune complexes, co-infections. "No point in it...won't be helpful," we are told. We are told we may try steroids, but then when we ask about testing other infections first, are sent to Infectious Disease. Wasted time. We ask why kids who are debilitated get a shot at "normalcy" with IVIG/PEX, etc., while kids who tic, head to toe, and have ocd, and can't draw anymore, but are "Happy" as our pandas doc has told us, do not get a chance to live without the symptoms. We are told to pull tonsils. No diagnosed strep. Tonsils are small. We are PITAND. We NEVER are symptom-free. We do not EVER have remission of symptoms since it all started. WE jump from these tics to those tics, these compulsions to those compulsions.

 

I am hopeless. I am paralyzed. I don't know if it's just too late. Is it? Seriously here. Are we what Dr. Swedo calls "chronic" pandas? I wish she would reply to an e-mail. I wish our pandas doc would reply to a call or e-mail. I wish I didn't have to play doctor and lead. I wish I could clearly link dd's symptoms to specific illness. I wish I knew if she tics more from yeast, mold, allergies, hidden strep in tonsils.....yet we can't find out. I wish we had more money to go from doctor to doctor. I wish it wouldn't affect my child by doing so, making her think she's "abnormal." Is there any chance a steroid at this point in her illness (tics unremitting for over 18 months, ocd for who knows how long...started prior).

 

I can't take it anymore. I stayed at AWANA tonight and watched her scratch her face...evenly on both sides, of course...then tap tap tap her face after every time she touches it. Smelling her fingers. Smelling everything. Blinking. Eye rolling. Scrunching nose. Hopping. Blowing on her hands. Dots all over her papers from tapping after every letter. The list goes on. But she appears "happy." So no treatment. Tourette's it is, I suppose. And OCD. How sad. So so sad.

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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.

Edited by philamom
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Hi Eljomom.

 

I know it is hard to know what to do. I have read a lot of your posts, and am/have been in a very similar position. A basically "happy" kid with mainly tics and anxiety, and only low level compulsions. Negative western blot, told not to pursue lyme by our PANDAS doc.

 

BUT...I did anyway. And here is why. First, although DS's western blot was CDC and Igenex negative, he did have band 58 and band 41 positive and when I started looking into it, it seemed that if we were in Europe, that would be enough to declare him positive in Europe from at least some European labs. Also, he did test positive on the lyme urine test, so that helped. BUT the real reason is, I was not comfortable with IVIG and PEX for him, and what I wanted to try was stronger antibiotics (which it sounds like is what you want to try) and an LLMD will prescribe that, even if a PANDAS doc won't. (Since you say you have begged for stronger abx and aren't getting them). And my son IS getting better. Even the upswing of tics last week with the change of abx are getting better.

 

Also, it would have been much less pathologizing to do this treatment with my son when he was younger. I would start sooner rather than later. And if you can possibly teach her to swallow pills, that will help so much -- much easier and less pathologizing and better tasting than swallowing tons of liquid medicines.

 

I looked up an old post of yours to see your DD's igenex results. They seem pretty lyme-ey to me. And a lot of the LLMDs will do some appts at phone consults, after getting your child started, so again less doctor visits and less for the kids to be involved.

 

I will post more later. I still think you should treat for Lyme, since it is basically the same treatment you want for PANDAS anyway.

 

(PS, did you ever get the last PM I sent you on 9/17? The system says that you didn't).

 

 

 

 

I have been reading all the recent posts about quickly treating pandas. I did not. I did not know of pandas when my dd started to not want to eat anything that someone had touched at around 4-5 years of age. Germaphobe. I did not know of pandas when my dd also had (has) major issues with clothing, shoes, socks, underwear, armpits of shirts, etc. I did not know to look at her MANY illnesses and correlate them with her ocd-ish stuff that I chalked up to quirks, difficult kid, youngest (ie., spoiled/babied...). When the 3 tics started, I did not know to link it to illness. When I didn't take her in for 104 fevers over the course of over 2 years, I did not know about pandas. When there was a one-day high fever, and within a week of it, an explosion of tics, head to toe, increased separation anxiety, more ocd, I thought we had a sudden onset of Tourette's. My brother has Tourette's. My father in law had rheumatic fever. I did not know of pandas.

 

After a few months of thinking my kid that I thought had a few transient tics had suddenly just taken a turn for the worse and developed Tourette's, I hit a link on pandas. I researched. I tried the pediatrician. I finally found one to test titers, 5 months later, and they were nonexistant. Not pandas, I was told. I found the forum. I had phone consult with dr. T. I had a 6 month wait for a neuro. at Childrens. I had a 3 month wait for Dr. L.

 

We started abx with Dr. L, while waiting on Cunningham's tests. She as not certain about pandas. DD sits still in her office for 2 minutes she is seen. We get worse on Augmentin. Is this now NOT pandas? we wonder. or were we just too late? too late to have the wonderful relief of abx? We switch to zithromax....100 mg/day. Not even treatment dose. We ask about dosage at 3 consecutive appointments. We are told "it should be enough." We are told to NOT pay attention to the tics...they are the last thing to go, and they are no big deal...easy to treat with drugs. we tested Lyme. "negative" but a number of +s and IND"s. Many say "pursue Lyme." We are told by pandas doc to let it go, and if we see an LLMD, we would no longer be seen by this pandas doc. We question testing other infections, immune complexes, co-infections. "No point in it...won't be helpful," we are told. We are told we may try steroids, but then when we ask about testing other infections first, are sent to Infectious Disease. Wasted time. We ask why kids who are debilitated get a shot at "normalcy" with IVIG/PEX, etc., while kids who tic, head to toe, and have ocd, and can't draw anymore, but are "Happy" as our pandas doc has told us, do not get a chance to live without the symptoms. We are told to pull tonsils. No diagnosed strep. Tonsils are small. We are PITAND. We NEVER are symptom-free. We do not EVER have remission of symptoms since it all started. WE jump from these tics to those tics, these compulsions to those compulsions.

 

I am hopeless. I am paralyzed. I don't know if it's just too late. Is it? Seriously here. Are we what Dr. Swedo calls "chronic" pandas? I wish she would reply to an e-mail. I wish our pandas doc would reply to a call or e-mail. I wish I didn't have to play doctor and lead. I wish I could clearly link dd's symptoms to specific illness. I wish I knew if she tics more from yeast, mold, allergies, hidden strep in tonsils.....yet we can't find out. I wish we had more money to go from doctor to doctor. I wish it wouldn't affect my child by doing so, making her think she's "abnormal." Is there any chance a steroid at this point in her illness (tics unremitting for over 18 months, ocd for who knows how long...started prior).

 

I can't take it anymore. I stayed at AWANA tonight and watched her scratch her face...evenly on both sides, of course...then tap tap tap her face after every time she touches it. Smelling her fingers. Smelling everything. Blinking. Eye rolling. Scrunching nose. Hopping. Blowing on her hands. Dots all over her papers from tapping after every letter. The list goes on. But she appears "happy." So no treatment. Tourette's it is, I suppose. And OCD. How sad. So so sad.

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You have never tried steroids. Before giving up I would at least give a three or four week steroid taper a try. I would stick with the entire taper. Remember the first week may swing up and down. It does for many. Call Dr. L's office and ask for that steroid taper. Tell Andrea that you were there and you want the script for the taper without having to travel back to see her. Give it a shot. OR perhaps Dr. B does tapers, I do not know. But I would do it for longer than a 5 day burst. You want the month long taper.

 

See how your child does on this taper before making any decisions.

 

This is just my opinion. I offer you what I would do. Sometimes those steroid tapers work miracles. I have seen it!

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I have been reading all the recent posts about quickly treating pandas. I did not. I did not know of pandas when my dd started to not want to eat anything that someone had touched at around 4-5 years of age. Germaphobe. I did not know of pandas when my dd also had (has) major issues with clothing, shoes, socks, underwear, armpits of shirts, etc. I did not know to look at her MANY illnesses and correlate them with her ocd-ish stuff that I chalked up to quirks, difficult kid, youngest (ie., spoiled/babied...). When the 3 tics started, I did not know to link it to illness. When I didn't take her in for 104 fevers over the course of over 2 years, I did not know about pandas. When there was a one-day high fever, and within a week of it, an explosion of tics, head to toe, increased separation anxiety, more ocd, I thought we had a sudden onset of Tourette's. My brother has Tourette's. My father in law had rheumatic fever. I did not know of pandas.

 

After a few months of thinking my kid that I thought had a few transient tics had suddenly just taken a turn for the worse and developed Tourette's, I hit a link on pandas. I researched. I tried the pediatrician. I finally found one to test titers, 5 months later, and they were nonexistant. Not pandas, I was told. I found the forum. I had phone consult with dr. T. I had a 6 month wait for a neuro. at Childrens. I had a 3 month wait for Dr. L.

 

We started abx with Dr. L, while waiting on Cunningham's tests. She as not certain about pandas. DD sits still in her office for 2 minutes she is seen. We get worse on Augmentin. Is this now NOT pandas? we wonder. or were we just too late? too late to have the wonderful relief of abx? We switch to zithromax....100 mg/day. Not even treatment dose. We ask about dosage at 3 consecutive appointments. We are told "it should be enough." We are told to NOT pay attention to the tics...they are the last thing to go, and they are no big deal...easy to treat with drugs. we tested Lyme. "negative" but a number of +s and IND"s. Many say "pursue Lyme." We are told by pandas doc to let it go, and if we see an LLMD, we would no longer be seen by this pandas doc. We question testing other infections, immune complexes, co-infections. "No point in it...won't be helpful," we are told. We are told we may try steroids, but then when we ask about testing other infections first, are sent to Infectious Disease. Wasted time. We ask why kids who are debilitated get a shot at "normalcy" with IVIG/PEX, etc., while kids who tic, head to toe, and have ocd, and can't draw anymore, but are "Happy" as our pandas doc has told us, do not get a chance to live without the symptoms. We are told to pull tonsils. No diagnosed strep. Tonsils are small. We are PITAND. We NEVER are symptom-free. We do not EVER have remission of symptoms since it all started. WE jump from these tics to those tics, these compulsions to those compulsions.

 

I am hopeless. I am paralyzed. I don't know if it's just too late. Is it? Seriously here. Are we what Dr. Swedo calls "chronic" pandas? I wish she would reply to an e-mail. I wish our pandas doc would reply to a call or e-mail. I wish I didn't have to play doctor and lead. I wish I could clearly link dd's symptoms to specific illness. I wish I knew if she tics more from yeast, mold, allergies, hidden strep in tonsils.....yet we can't find out. I wish we had more money to go from doctor to doctor. I wish it wouldn't affect my child by doing so, making her think she's "abnormal." Is there any chance a steroid at this point in her illness (tics unremitting for over 18 months, ocd for who knows how long...started prior).

 

I can't take it anymore. I stayed at AWANA tonight and watched her scratch her face...evenly on both sides, of course...then tap tap tap her face after every time she touches it. Smelling her fingers. Smelling everything. Blinking. Eye rolling. Scrunching nose. Hopping. Blowing on her hands. Dots all over her papers from tapping after every letter. The list goes on. But she appears "happy." So no treatment. Tourette's it is, I suppose. And OCD. How sad. So so sad.

 

When I saw the 3 AM time on your post, I knew it would be one of desperation. But I just wanted to tell you my daughter started with PANDAS at 6 and was 16 before we started treatment. Keflex and Omnicef are what worked for my daughter, who now at 19 has maybe a tic a day, and is happy and away at college. It is NOT too late for your daughter. My daughter did not improve on Penicillan and was worse on Azith or Biaxin. Try Cepholasporins. If that doesn't work, try IVIG a few times. If that doesn't, try PEX, but you WILL get there. Just hang in there. It's NOT too late!!!!!!

 

(Hugs)

Nancy

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We also didn't know about PANDAS when my now 15 yo got sick. Took us 4 years just for a dx...he got sick at 8 years old...diagnosed at 12, started treatment at about 13 He's doing well, but we are treating for Lyme (also tested very NOT positive, but now, clinically very definitely positive for bartonella, babesia and erlichiosis, plus exposed to a lot of viruses we found out.) My 18 yo was probably sick since birth, but just figured it out at 15. He's now in college, and doing well (probably wouldn't hurt to do more IVIG, because he's getting a bit "loud" again.) He is also being treated for Lyme, PANDAS, and a lot more.)

 

I would suggest you get to Dr. B., and look at the immune system. I also agree that you should try to get to an LLMD, because Lyme is a clinical dx, and the low dose of abx and/or the wrong abx would mean that you wouldn't get relief.

 

Steroids have also been a lifesaver for us, but if it's lyme, could (but not always) makes it worse. But, your son needs relief...now, and honestly, if it was mine, I would probably, at least try the steroids while waiting for the other appointments.

 

Where do you live, and we can PM you names of Lyme specialists, hopefully, in your area.

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So saddened by your post. Please know that my son has been on antibiotics for a year and has never gone into "remission." He is still very debiliated in terms of functioning though he is strong now and happy. Through this journey I would say that I am more convinced than ever that my son is PITAND and that there is some infection causing it. I agree with getting a second opinion. PANDAS doctors tend to see things through PANDAS glasses. I know what I really needed for my son was a doctor that would look at him through PITAND glasses. I think Dr. B and Dr. T would do that. There are may more triggers than strep involved and to stop there I feel is a disservice to my son.

 

And about the thoughts that it's too late with some children. I know some doctors are talking that way, but that just doesn't make any sense to me. Harder to treat, yes. Too late, no way. At least that's how I feel with my 16 year old.

 

In terms of what the infection trigger may be, my son just came back very positive for KPU, a test I had waited to run because I was sure it would come back negative and didn't want to take my son off supplements for a week as it requires. So in other words, I'm going to keep digging. I would be glad to PM a list of the tests we have had done. Most were covered by insurance.

 

If money is an issue, if there is any doctor that would be sympathetic (or even empathetic) to that it would be Dr. T.

 

Praying for you and your daughter. God is able!

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Eljomom,

 

Sorry to hear about your continued struggles. My Dd 10 is also the baby of the family. Normal enough through toddler years, she first became oppositional (spoiled according to family members) then began to seem ADHD, and by age 7 had some OCD contamination stuff. Again, we concluded allergies, possible hypoglycemia, grandfather OCD, Mom a little hyperactive, etc. Then overnight PANDAS explosion July 2010. Hopping on one foot, showering 8-10 times a day, or not at all for weeks at a time, can't bring school stuff home or home stuff to school, can't play with any toys, we can't touch her, etc. Dr B rescued her with abx in Sept 2010, but also he found lyme bands via Igenex in Nov. He said she had lyme for over a year prior. Moved on to lyme doc when PEX/ Ivig became the only solution. Lyme doc clinically diagnosed bartonella, babesia, ehrlichiosis, rickettsia, (we were shocked, she was still sort of functioning). Now 9 months later, after very aggressive abx and herbal medicine, we have a child that we do not know. Not only happy, but popular with friends, cooperative, studious, motivated. Brought home her first 100 on a math test yesterday, (high math group in school), was asked to play on the boys soccer team, reading again (she hadn't read in nearly a year). I know there are huge debates re: PANDAS or Lyme... The docs know she had lyme. We know she reacts PANDAS-like to strep/allergies/colds with increased OCD. But getting after the lyme has reduced all of the PANDAS symptoms, while the reverse was not true.

 

I believe you should see a lyme doctor and get after it, fast. Your hope should not be lost, but you need to take action, quickly, so she can begin having a normal childhood. No time to wait in my opinion. We are thanking God we charged ahead with this illness. It seems largely in the past now.

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Oh so sorry - I hear the pain and despair! I remember that from when my DS5 was very, very sick....and now he is not. We went to Dr. B in CT. We feel that he is very thorough and covers all possibilities for infection in his diagnosis. I would NEVER have believed that my son had the coinfections that apparently has. I was shocked when they were positive...in a numb state and doubtful when yet more abx were prescribed...then elated to see my son improving and returned to us again. Do NOT give up! It is worth this last cash and effort to get a comprehensive dx. If it turns out that pandas is ruled out, you will know and can go from there. If it turns out that there is something impeding a pandas recovery, and your daughter can get what she needs to start her journey out of pandas, then you will be elated that you did this. I have great faith in Dr. B. Why not make an appt. now, as he has a 2+ month wait? You can always cancel, but at least you will be "in". You are NOT alone! -Kath

 

Philamom - how incredibly awesome for you to offer a stay at your home! I wish I could do the same and have thought of it many times, but NC has little offer in the way of pandas docs. Kudos to you and your family!!

 

Kath :)

Edited by Beeskneesmommy
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Hi Eljomom,

I too remember your daughter's lyme results and based on those and her response to augmentin I would pursue lyme treatment. You have said in previous posts that all of your kids have been bitten by ticks so the risk to exposure is certainly possible. Given the fact that she has not improved with zyth alone I think something more chronic is at play. Many of our children were not diagnosed quickly and still improve with antibiotic treatment when the right infections were addressed. My daughter ticced for over a year before I even considered PANDAS then after 9 months of PANDAS treatment we uncovered lyme. She has improved greatly and I am so thankful that we have been able to get to the root of her tics. I personally do not believe that tourettes is a diagnosis in and of itself but really is only a collection of symptoms given a label. The criteria for tourettes is motor/vocal tics for a year. It is that simple to be diagnosed. So many of us have had to go from doctor to doctor to find what works for our kids and it is exhausting and expensive. What choice do you have other than to keep going. I know you are skeptical of lyme doctors and the antibiotics they prescribe but in my opinion I think you should run to a LLMD. It is definately not too late and you will feel better once you see results. I know we are not suppose to diagnose other people's children and I'm just a mom so take it for what it's worth...I think your daughter has lyme. She will get worse before better when treated but ultimately she will improve.

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[quote name='eljomom' timestamp='1317085317' post='121901'

 

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!

Edited by smartyjones
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eljomom- I think we travel a very similar journey and all I can say is do not give up. We too, I believe are PITANDS or PANDAX which makes things more complicated. See my last post about Dr. Murphy to see some of our story. I think looking into coinfections and other possibilities is important for both of us. It is very hard to not get discouraged when you see all of these cases that are so much more cut and dry. But from my experience, every time I abandon the idea that this is PANDAX... I get a slap in the face that reminds me- oh yes it is. And I have to recreate my history and remind myself what has been happening.

 

I am currently on my third major PANDAX journey and I plan to stick with it this time until I find the answers. My main suggestion would be to stick with one of the doctors that understands PANDAS and PITANDS. I have wasted plenty of time with doctors who do not. They will make YOU feel like you are crazy because they just have a closed mind.. and then you will get nowhere. I am not sure where you are but Dr. B sounds like a good immune guy. I am considering him as well. And you know I have considered Dr. M. It is my opinion that we both need a dr that is more comprehensive. I do think Dr. T runs more tests... but they still may not dig deep enough.

 

DO NOT think it is too late. I can say that I have seen major improvements in my son when I can keep him healthy. Now I am just trying to figure out how to do that. With PITANDS... the triggers could be very silent.....

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I will join in all these others, especially the other Nancy (fcefxer) in saying, "No. It's not too late." We all need a break (or a breakdown) now and then; this is a long, hard slog up a very steep hill. But after you take a little time to regroup, circle back around and dig into fresh options and opinions. There's still work to do, and your child is counting on you. YOU CAN DO IT!!!!

 

This is an old story from me and I run the risk of becoming a broken record, so for the sake of all the other forum folks who've heard me say it more than a dozen times, I'll spare you all the long version of my DS's story . . . again! Just suffice it to say, we went 6 years operating off a diagnosis of "regular OCD" before even finding and acting upon PANDAS. So my DS had more than 4 years of an SSRI and 6 years of CBT/ERP therapy, compulsions and obsessions, rituals, germaphobia, etc. behind him by the time we started treating the underlying infectious trigger (which in his case is documented as strep).

 

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.

 

For most of us . . . maybe especially those of us who arrived to the PANDAS party late, this is not an overnight "cure" or even improvement. This is a journey and maybe even a life-long management process; that remains to be seen. But the quality of your child's life and your own can be improved dramatically within a relatively short time with the proper interventions, dogged determination and persistence.

 

Don't sell yourself or your daughter short! You guys can get ahead of this thing! Take a deep breath, lean on your family, friends and Forum Friends, and dig in! We're here for you!

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