What made you think Lyme?

[Bill]

My DS7 son was diagnosed PANDAS earlier this year.

 

He had a tick in his scalp last (for about 12-15 hrs) last fall.

 

During my visit with Dr.K I asked about getting my son tested for Lyme, and he asked if there was a rash at the bite spot. There was not, but it was on his scalp.....so I'm not sure if I would've even seen it.

 

My thought was why not rule that out since we had to go in for a blood work up anyway. But Dr.K said no need.

 

Do you think I should push for the test?

 

How would I know if there's any Lyme involment if we don't test?

 

 

My opinion in response to your questions:

 

Lack of a rash is meaningless. Dr. K. should know that.

 

I do not advocate pushing for the test necessarily but pay attention and continue researching. I do not know your son's history. Trust your instinct.

 

The problem with lyme testing is that there is often no clear cut evidence. A lot of it is clinical diagnosis. But wait - that's what our son's pandas diagnosis was too, a clinical diagnosis. Lyme diagnosis, like pandas diagnosis, continues to mature. Neither is without fault and there is a lot of trial and error along the way. I think the lyme doctors have gotten better about being able to treat for short amounts of time to bring out the bugs and hence positive test results if they are to be had.

 

My son fits neither the classical Pandas or chronic lyme patterns so there you go. Perhaps he has neither and this is just a stop on the way. But thanks to everyone's input on ACN, at least we still have areas to pursue.

 

bill

Edited April 15, 2011 by Bill

[HT's Mom]

Well thank you to dc mom and all concerned about us newbies. This thread was starting to freak me out!

[dcmom]

I am ALL for this mom testing for everything (this includes lyme)- I am sorry if this did not come across in my post.

 

My concern is sending a mom of a pandas child off to llmd land- without getting input from other specialties. LLMD's (for the most part) are not the docs to treat pandas- you will be led down the wrong path there.

 

I think it is important that chronic lyme does not overshadow pandas, on the pandas board. I think it is totally responsible and necessary to suggest that the parent should consider lyme testing, and to go over to the lyme board to find more information, but I think there is a lot of history on the forum that a newbie does not know. I know how overwhelming it is to be new, overwhelmed with your child's (in my case sudden) debilitating illness- you are not of clear mind to sort through all of this. If I started on this forum now, I would assume that science is finding out that pandas is actually chronic lyme- and this is not the case.

 

Unfortunately- while lyme and pandas in some ways look alike, they are treated (by most docs) very differently. IMHO immunomodulating treatments (quickly) are key in pandas (pex, steroids), yet one is contraindicated (by the llmds) in lyme, and the other is major $$. This leaves and overwhelmed and undecided parent between a rock and a hard place.

 

I REALLY wish this didn't have to be SO, SO hard, on top of how hard it is to see your child suffer.

[KeithandElizabeth]

I think there are so many great posts on this thread. I look at the big picture slightly differently in that I do not think that my children actually have Lyme Disease and not PANDAS, but rather that my children had a neuropsychological response to many different microbes and that perhaps this response became an autoimmune reaction.

 

I think it is important to check for borrelia (lyme), bartonella, babesia, strep and mycoplasma to name a few because I think that it is vital to rid the body of all of the underlying infections in order to heal the autoimmune response. I think that Lyme is one of the trickier bacterias to treat because it lacks a cell wall and changes form. When faced with multiple antibiotics, lyme changes into a cyst form in order to hide. Mycoplasma also lacks a cell wall and can lead to many autoimmune diseases. Lyme and mycoplasma, unlike strep, often need multiple antibiotics.

 

Even though strep was our son's biggest PANDAS trigger and he initially responded to strep treatment, he was not healing completely and we needed to keep digging. I wish we had found the lyme before we did the multiple IVIG's. We are now using an LLMD who has helped us deal with strep, staph, mycoplasma, bartonella, babesia and klebsiella. We decided to treat all of the infections in our daughter (unlike our tactic with our son) before doing an IVIG and now that we have treated all of her infections, she no longer needs an IVIG.

 

So, my advice would be to check and treat ALL microbes!

 

Elizabeth

[sf_mom]

What can I say...... I'm exhausted from the debate. AND, I probably would have over looked the post had it not specifically mentioned Lyme in the title.

 

As we all know now is its important to check for: Strep, Myco, Lyme, Babesia, Bartonella, SMRF, Ehrlichiosis, Parasites, Viruses, Environmental Toxins, Allergens, Mold/Fungus, Yeast, CBC, Immune Deficiencies, etc.

 

I don't believe its all strep and I don't believe its all Lyme but probably a whole host of things specific to your child. The best way to go about getting your child well is to investigate as best as you possible can with the available and willing Dr.s close to home. LLMD tend to be a 'little' more accessible and have the ability to test most of the things listed above. Some understand PANDAS and some do not. Dr. B is in CT and he is a great option for preliminary testing if you are close by. He does test for Lyme/co-infections and is starting to understand when its implicated and when its not.

 

For many of us its been a long journey and we've all learned a lot. There is no easy fix for any of these illnesses. Hence plan on a two year horizon with which ever direction you head and more importantly as parent be able to recognize when something isn't working.

 

DCMom: As you know we did have sudden on-set after a strep related illness but at the same time he was exposed to a child with a virus/full body rash and he was also three weeks post his annual vaccinations.....so a triple whammy to the immune system. He had balance issues at age one and a larger than normal head that I would not have recognized as symptoms of Lyme. Otherwise, he seemed to be a very healthy child. The first time he was ever on antibiotics was 4 1/2 years of age for what was diagnoses as a sinus infection. He was mildly symptomatic with a cough from then on until sudden on-set.

 

I'll have to keep you posted on all the rest... full remission of symptoms 'very close again'. We did have a great response to hdIVIG for PANDAS treatment with back to back days of full remission of symptoms and since treating for Lyme we have been on rewind several times thanks to antibiotic rotations and herxheimer response. I do have confidence its congenital Lyme for all three of 'my' children with one that had a PANDAS like sudden on-set.

 

I also worry that they won't be able to get it all and they will have a lifetime struggle with the spirochete. Remember I've got one child where it likes to attack his heart. Thankfully I am informed case manager for my kids now.

Edited April 15, 2011 by SF Mom

[mama2alex]

I am ALL for this mom testing for everything (this includes lyme)- I am sorry if this did not come across in my post.

 

 

Hi DCMom, If you are responding to me, I wasn't referring to your post when I mentioned "being advised not to waste time or money on Lyme testing." I think your responses are always very balanced and sensible!

 

I realize it can be frustrating for some on the PANDAS forum when those of us who's children (and/or ourselves) have been diagnosed with Lyme post on the PANDAS forum. But I think it is mainly limited to responding to newer folks asking questions specifically about Lyme on the PANDAS forum. I'm not trolling for Lyme topics - I am still looking for any and all info that can help my son, and he still backslides with strep exposure as we saw in February when my husband had a bad case of it. But of course, when a Lyme topic comes up on the PANDAS forum, it does catch my eye! I think the "Lyme" and "Lyme/PANDAS/Pitand" moms just don't want anyone else to miss the diagnosis for as long as we did. For me it was over a year that we had the positive Bartonella in hand, but didn't believe it could be Lyme/co-infections. Our hearts are in the right place, and we're not trying to hurt or offend anyone with our posts.

[matis_mom]

I realize it can be frustrating for some on the PANDAS forum when those of us who's children (and/or ourselves) have been diagnosed with Lyme post on the PANDAS forum. But I think it is mainly limited to responding to newer folks asking questions specifically about Lyme on the PANDAS forum. I'm not trolling for Lyme topics - I am still looking for any and all info that can help my son, and he still backslides with strep exposure as we saw in February when my husband had a bad case of it. But of course, when a Lyme topic comes up on the PANDAS forum, it does catch my eye! I think the "Lyme" and "Lyme/PANDAS/Pitand" moms just don't want anyone else to miss the diagnosis for as long as we did. For me it was over a year that we had the positive Bartonella in hand, but didn't believe it could be Lyme/co-infections. Our hearts are in the right place, and we're not trying to hurt or offend anyone with our posts.

Very much the same feeling here... I think we need to LOOK AT THE TITLE OF THE POST: "What made you think Lyme?" Well, I think most of us "Lyme Moms" were just trying to answer that question from our own experience I think this whole debate, although very educational, totally side-tracked the original question.

[Tamistwins]

My DS7 son was diagnosed PANDAS earlier this year.

 

He had a tick in his scalp last (for about 12-15 hrs) last fall.

 

During my visit with Dr.K I asked about getting my son tested for Lyme, and he asked if there was a rash at the bite spot. There was not, but it was on his scalp.....so I'm not sure if I would've even seen it.

 

My thought was why not rule that out since we had to go in for a blood work up anyway. But Dr.K said no need.

 

Do you think I should push for the test?

 

How would I know if there's any Lyme involment if we don't test?

 

 

Just my humble opinion: I think in your situation, if I was you, and my dd6 had a tick on her head for 12-15 hours last Fall, I would do the intital test for Lyme. I think if you don't, it will be in the back of your head forever, nagging you.

I am not testing my dd6 for Lyme. I will tell you why I am not thinking Lyme: We have a strep timeline history, following a strep infection when my dd was 2 yr. 3 months old, that was treated w/amoxicillian, that I never followed up on, and everything pandas happened after that (also had exposure to strep as an infant in daycare, then jump off the head growth chart, and unexplained fevers- could have been from excessive vaccines, though, whacking out her immune system.)

We live in a non Lyme area, always have. My dd has been very sheltered- never out camping, in the woods, we have never owned a family pet. There is no way she has ever had a tick on her. My DH and I are in our mid-40's, have never remembered a tick bite, and have no symptoms whatsoever of Lyme. Neither does my 13 yr. old son, or other dd4.

We've had no herx with antibiotics, nor an awful 'herx' that seemed unduly with IVIG- just the brutual saw tooth of the first IVIG.

Sometimes on this board I feel I might be re-miss, or maybe others think I'm 'fooling myself.'

But it's my intuition and belief, we don't have Lyme.

I have twins b/g who were the sweetest, affectionate enjoyable children. Before the age of 2 I insisted on a throat culture even though it is unlikely to get strep at such a young age. They both were positive, doctor was shocked because they didn't present with typical symptoms. This is when my life was beginning to be turned upside down. They were cranky, irritable often my son presented the worse.. Giving me a hard time to get dressed, go in shower which he previously loved. I thought this is terrible twos but it never ended. Both of them kept getting strep numerous amounts of time. I asked ped about it and they said some kid s are more suceptible. I couldn't leave anywhere without them screaming and running out the door, my life was and is a nightmare. One day 4 or 5 yrs oldmy son started screaming from bathroom ok..I said what's OK he said just okkkkkk. I then took him to a psychiatrist for ocd it consumed his life he had no enjoyment. Meds didn't work then we went to neurologist because he began banging his head on hard objects, kissing tic, vocal noises, touching everything and many more things that I rather not even recall. Turns out he had a stubborn strep infection that didn't clear after 10 days antibiotics. At this point I knew of pandas and I went to one of the specialist. Head banging stopped, things came and went but never back to normal. Rages,odd. My life is ######, can't go anywhere can't do playdates. We did steroids no improvement. We did 2 hd ivig only worsening. My kids are not in the woods, we live in nj, never saw a tick would never dream of lyme. We have 3 doctors diagnoses of pandas. We had too many known strep infections to count. Yet after not doing well with antibiotic and ivig treatment we did igenex testing thanks to the members who do mention lyme again. Turns out my daughter who has lined up her toys, washed hand alot due to frequent innovation and other than that was pretty easy child has positive lyme. My son wasn't positive but has clinical diagnoses of bartonella. He also has mycoplasma. They are both on lyme medication by an llmd. My daughter now is the nastiness I have ever seen she has rages,odd. Between the two of them it is a crazy house. Always screaming and dysfunctional. But, at school they apparently hold it together. My daughter has developed new tics and I'm praying the herxing will soon pass. I know pandas came first.. Pandas is not lyme but due to a compromised immune system I'm sure it makes it easier to pick up other illnesses and harder to rid the system of it. Lets face it tics are growing I just saw a report on the news about it. So it can not hurt to examine every angle. I am grateful for this forum and grateful for people that enlighten us to other illnesses which may prevent healing with pandas treatment alone. I think everyone on here just wants to help their children being aware never hurt anyone.

[GraceUnderPressure]

My ds18 has only had strep once that I knew of around the age of 6. I learned about PANDAS some years ago, but dismissed it as a possibility for us because we have no clinical history of strep. I thought - and our PANDAS doc agreed - that mycoplasma or a virus was a bigger suspect & that my ds is more likely a PITAND. We decided to test for all the major suspects known to be capable of neurological impairment which definitely includes Lyme. We almost decided to save money & skip it, but wanted to rule it out before we did IVIG because I had read that can skew the test if you decide to do it later - my ds had no apparent risk factors (I've never seen a tick on him and we are not in a "hot spot" for it). He turned out to be solidly positive for Lyme not just by Igenex rules, but also by CDC rules. Not sure who was more stunned - me or our PANDAS doc.

 

Anyway, I just finished reading "Cure Unknown" and all I can say is wow. There are many unacknowledged hotspots & the politics affecting the info the public receives almost makes the attempt to get people to accept PANDAS as a reality look like a walk in the park. For those who are skeptical, but seeking to understand - I strongly recommend this book. At one point she describes the research of a doctor in which he was examining the brains of deceased Alzheimer's patients & 7 of the 10 he looked at had Lyme spirochetes in them. What was the most alarming about it was that he discovered these patients had infections that had become transfections - their bodies' were churning out cells that had essentially hybridized their own DNA with the borrelia's DNA. Just imagine what THAT can do to an immune system that's already turned on its self!

 

There is so much that we do not know about it, but what we do know makes it clear that Lyme is not a disease that can be safely ignored at this point - esp in a child who is already immune impaired. In addition to the immune health of the host, there are a substantial number of borrelia strains & some of them are relatively mild while others are quite virulent - so that's another reason that some people will get a mild case or no symptoms at all while others end up debilitated.

 

My son's tests for strep found nothing, viral titers high but not high enough to mean anything, mycoplasma results were ambiguous, & the lyme we almost didn't do was definitively positive. I am one of the grateful moms who are indebted to the Lyme moms who post here to let newbies know that it's not all strep/PANDAS - there are a substantial number of PITANDs as well. All of these neuro bugs can suppress the immune system in a way to avoid detection which also makes the host more vulnerable to other bugs, including other neuro bugs. The way I see it, the more info we have about what specifically our kiddoes' bodies are fighting, the better our chances are of getting them well again.

[lmi1973]

I realize this topic has sort of gone into a larger debate, but, for those who have gone for lyme testing or just more extensive testing such as mycop or bartonella/babesia, has it been suggested that we as parents be tested as well? Brief synopsis: DS10 diagnosed with PITAND by Dr. K & Dr. T. Dr. T found mycoplasma infection which ds is currently on abx for (clymdamycin). Recently saw pics of bartonella rash online and realized my husband had this rash last summer, unquestionable. dh also suffers from chronic fatigue (although he says this is just part of life & doesn't mean he is sick) - asked him go to his gp and request mcyop and bartonella and all other bloodwork my son has had. Yesterday at the appt., the GP flat out refused to order bloodwork & told dh that bloodwork would come back pos. and mean nothing other than at one point he was infected. Gave him example that if he tested for chicken pox now, the titers would show up pos b.c. he was once infected as a young child. Also, since dh has no obvious symptoms (other than fatigue, which dh thinks normal), that it doesn't matter if he has these infections or not?! I am not as educated on this as some and dh seems to believe dr. and looks at me like I am more of a nut job than when I first asked him to get his blood tested in the first place. DS had more bloodwork ordered by Dr. T to include bartonella and babesia based on my remembering dh's rash, results not in yet. Have had western blot test run for lyme on ds and negative; considering igenex if bartonella comes back positive. GP has referred dh to infectious disease Dr. & told dh that maybe this dr. will have better explanation as to why they are meaningless. I see my gp on Tuesday, no idea if she will order or not.

 

On the other bigger debate, I agree; we are all just trying to help our children here. All of this is so confusing. If preferred, please let me know if I should repost this to lyme forum. I did not post there as we have no clear evidence at this point that any of us have lyme, only that son has myco p. I may post there as well if everyone is too tired to respond to this thread!

[Guest pandas16]

I can't argue anymore. Best of luck, you have my opinion and you have my personal story. Feel free to PM me.

Edited April 16, 2011 by pandas16

[SSS]

My DS7 son was diagnosed PANDAS earlier this year.

 

He had a tick in his scalp last (for about 12-15 hrs) last fall.

 

During my visit with Dr.K I asked about getting my son tested for Lyme, and he asked if there was a rash at the bite spot. There was not, but it was on his scalp.....so I'm not sure if I would've even seen it.

 

My thought was why not rule that out since we had to go in for a blood work up anyway. But Dr.K said no need.

 

Do you think I should push for the test?

 

How would I know if there's any Lyme involment if we don't test?

 

 

Just my humble opinion: I think in your situation, if I was you, and my dd6 had a tick on her head for 12-15 hours last Fall, I would do the intital test for Lyme. I think if you don't, it will be in the back of your head forever, nagging you.

I am not testing my dd6 for Lyme. I will tell you why I am not thinking Lyme: We have a strep timeline history, following a strep infection when my dd was 2 yr. 3 months old, that was treated w/amoxicillian, that I never followed up on, and everything pandas happened after that (also had exposure to strep as an infant in daycare, then jump off the head growth chart, and unexplained fevers- could have been from excessive vaccines, though, whacking out her immune system.)

We live in a non Lyme area, always have. My dd has been very sheltered- never out camping, in the woods, we have never owned a family pet. There is no way she has ever had a tick on her. My DH and I are in our mid-40's, have never remembered a tick bite, and have no symptoms whatsoever of Lyme. Neither does my 13 yr. old son, or other dd4.

We've had no herx with antibiotics, nor an awful 'herx' that seemed unduly with IVIG- just the brutual saw tooth of the first IVIG.

Sometimes on this board I feel I might be re-miss, or maybe others think I'm 'fooling myself.'

But it's my intuition and belief, we don't have Lyme.

I have twins b/g who were the sweetest, affectionate enjoyable children. Before the age of 2 I insisted on a throat culture even though it is unlikely to get strep at such a young age. They both were positive, doctor was shocked because they didn't present with typical symptoms. This is when my life was beginning to be turned upside down. They were cranky, irritable often my son presented the worse.. Giving me a hard time to get dressed, go in shower which he previously loved. I thought this is terrible twos but it never ended. Both of them kept getting strep numerous amounts of time. I asked ped about it and they said some kid s are more suceptible. I couldn't leave anywhere without them screaming and running out the door, my life was and is a nightmare. One day 4 or 5 yrs oldmy son started screaming from bathroom ok..I said what's OK he said just okkkkkk. I then took him to a psychiatrist for ocd it consumed his life he had no enjoyment. Meds didn't work then we went to neurologist because he began banging his head on hard objects, kissing tic, vocal noises, touching everything and many more things that I rather not even recall. Turns out he had a stubborn strep infection that didn't clear after 10 days antibiotics. At this point I knew of pandas and I went to one of the specialist. Head banging stopped, things came and went but never back to normal. Rages,odd. My life is ######, can't go anywhere can't do playdates. We did steroids no improvement. We did 2 hd ivig only worsening. My kids are not in the woods, we live in nj, never saw a tick would never dream of lyme. We have 3 doctors diagnoses of pandas. We had too many known strep infections to count. Yet after not doing well with antibiotic and ivig treatment we did igenex testing thanks to the members who do mention lyme again. Turns out my daughter who has lined up her toys, washed hand alot due to frequent innovation and other than that was pretty easy child has positive lyme. My son wasn't positive but has clinical diagnoses of bartonella. He also has mycoplasma. They are both on lyme medication by an llmd. My daughter now is the nastiness I have ever seen she has rages,odd. Between the two of them it is a crazy house. Always screaming and dysfunctional. But, at school they apparently hold it together. My daughter has developed new tics and I'm praying the herxing will soon pass. I know pandas came first.. Pandas is not lyme but due to a compromised immune system I'm sure it makes it easier to pick up other illnesses and harder to rid the system of it. Lets face it tics are growing I just saw a report on the news about it. So it can not hurt to examine every angle. I am grateful for this forum and grateful for people that enlighten us to other illnesses which may prevent healing with pandas treatment alone. I think everyone on here just wants to help their children being aware never hurt anyone.

*Thank you for the courage and time to reply directly to my post. I read with rapt attention to your story, it hit home, the similarities and the #### you have been through in detail from age 2, me too.

I am not blind to the Lyme- I looked up LLMD's in my area, there is one rather close (not insurance covered, of course) BUT, we seem to be doing well after these IVIG's- oh, not right away, but this 2nd one we finished 6-7 weeks out from the first, in the 3 days post, it has been a vast improvement- we've had no herx, and a clear improvement-in fact, right now, she is doing better than I've seen her. I just don't have the evidence, and frankly I'm exhausted, to look into this, it is not where I feel I'm being led, but I have gathered information in case it becomes necessary to look further.

I don't know how our path will look in the future, but I will be forever grateful for the information and sharing of the folks on this board.*

[Guest pandas16]

I am ALL for this mom testing for everything (this includes lyme)- I am sorry if this did not come across in my post.

 

 

Hi DCMom, If you are responding to me, I wasn't referring to your post when I mentioned "being advised not to waste time or money on Lyme testing." I think your responses are always very balanced and sensible!

 

I realize it can be frustrating for some on the PANDAS forum when those of us who's children (and/or ourselves) have been diagnosed with Lyme post on the PANDAS forum. But I think it is mainly limited to responding to newer folks asking questions specifically about Lyme on the PANDAS forum. I'm not trolling for Lyme topics - I am still looking for any and all info that can help my son, and he still backslides with strep exposure as we saw in February when my husband had a bad case of it. But of course, when a Lyme topic comes up on the PANDAS forum, it does catch my eye! I think the "Lyme" and "Lyme/PANDAS/Pitand" moms just don't want anyone else to miss the diagnosis for as long as we did. For me it was over a year that we had the positive Bartonella in hand, but didn't believe it could be Lyme/co-infections. Our hearts are in the right place, and we're not trying to hurt or offend anyone with our posts.

 

 

I do believe you were referring to me implying that my comments are not well balanced and sensible... however if you read your post you see that you had a missed diagnosis. I feel very bad for you and sad that you suffered. We've all suffered but the girl in the post that the mom is referring to- she's not missing a diagnosis- the mom already stated very clearly her daughter was diagnosed with PANDAS. Associated with Strep. I have PANDAS- associated with strep. She didn't say her daughter had intestional parasites or unresolved tics. She never said her daughter was even not responsive to PANDAS treatment. She said her daughter had one tick and not all ticks even carry Lyme disease. She's being encouraged to go down a road that in reality she might not have to be on. She didn't see a bulls eye rash and her well educated doctor said don't worry. Really what all my posts sum up is listen to the doctor- a doctor who has a lot of experience diagnosing & treating PANDAS very successfully. If my parents had wasted their time with Lyme I would have lost SO much more of my childhood- and I apologize if you feel my comments are not well balanced and sensible but I'm entitled to an opinion just like everyone else. I firmly believe that the more time you waste on tests and let PANDAS- associated with strep go untreated, the more long term damage you will have from it and the harder it will be to recover.

Edited April 16, 2011 by pandas16

[Bill]

My DS7 son was diagnosed PANDAS earlier this year.

 

He had a tick in his scalp last (for about 12-15 hrs) last fall.

 

During my visit with Dr.K I asked about getting my son tested for Lyme, and he asked if there was a rash at the bite spot. There was not, but it was on his scalp.....so I'm not sure if I would've even seen it.

 

My thought was why not rule that out since we had to go in for a blood work up anyway. But Dr.K said no need.

 

Do you think I should push for the test?

 

How would I know if there's any Lyme involment if we don't test?

 

 

Realized I did not answer your question in the title of your post, "What made you think Lyme?"

 

Our son had PEX and had almost zero response. His eyes became slightly less dilated over several months and one foot/ankle seemed to be slightly less stiff though that was fleeting.

 

So for us, the lack of a response to traditional Pandas treatment (including ABX) led us to lyme. For the record, he is still diagnosed as Pandas plus chronic lyme. I like the term MCIDS better (multiple chronic infectious disease syndrome).

 

bill

[sf_mom]

Dr. K is our PANDAS Dr. and had I listened to everything he recommended during our last conversation my son would still have an intestinal parasite (blood in his stool) and resolved Lyme and no answer for our twins illness. He consider my son's remaining TIC at the time to be habit.... Current Dr. felt the TIC was a symptom of chronic infection and it would go away. Two very different opinions. We were diagnosed with PANDAS but it was so much more.

 

Our family absolutely loves Dr. K and will be forever grateful for his assistance in helping our older son almost to full remission of symptoms. I am also grateful to our current Dr. for believing there was much more at play and helping our twins. Not all Dr.'s are 100% right of all the time. We are here on this forum to help those that need guidance in sorting it all out especially when things didn't work as promised. Not to rattle those that are confident in their paths of treatment.

 

I would caution anyone from getting overly wrapped up in this is PANDAS or Lyme... and to understand what is working for your child and to have the ability to recognize when something isn't working. It stinks that we are all in this position but it is what it is... a lot of unknowns.