Starting to question diagnosis....

[qannie47]

I am starting to question if my ds is dealing with Pandas this time around. His first episode fit the criteria 100%, and I can definitely say that he responded very well to his IVIG>100% remission for 12+ weeks. But this latest episode? No strep, no positive response from abx, which, btw, according to what I have read, after IVIG, future episodes should not be as bad or long in duration. Otherwise, what is the point? I digress. While I do feel that his prior episodes (before IVIG), fit the bill, I am starting to wonder this time around. There is no infection to be found on any level, (even though he has had exposure). Yet he is waxing/waning all over the place, almost like a fast cycle of bi-polar. It is one step forward two steps back...THIS WAS NEVER APART OF HIS RECOVERY BEFORE, in the past, once he turned a corner, it was a continual progression forward even if there were some bumps along the way. And this constant motoric movement w/mood liability/rage, along with age regression-baby talk/declining emotional milestones...he just seems so stuck in it.

 

He will start a steroid burst on Tuesday, but I honestly don't know what to expect at this point. I am not even sure why we are doing it because from what I have read/heard, any positive effects don't even hold.

 

I am wondering if perhaps his first couple episodes were Pandas, but now this is just his high-strung disposition morphing into ADHD run a muck or some other horrible psyche disorder.

 

Any opinions?

[PowPow]

a positive steroid response will confirm the autoimmune portion of the diagnosis, whatever it may be.

Please let us know how he is as it goes.

We never had any infection to go with exacerbations, IVIG did not seem to help nor abx. If IVIG did, it was 3 months later each time.

steroids brought her back - not 100 % and not for ever, but they gave us a track record, her some breathing room and peace, and just as importantly, gave docs "proof" that she could get better and that her immune system was at play in her terrible psych symptoms.

[Missmom]

Does Motrin help at all?

[qannie47]

I have never used motrin/advil to treat his pandas symptoms.

[SSS]

You are asking for opinions, so I will give mine-

I would check this child for Lyme, Bartonella, Mycoplasma.

 

Based on the few posts of yours I have read, your timeline and information in your signature, and similarities in my own child.

 

Our 2nd HD-IVIG was like sheer magic out the gate. Happy, content, social: WOW!

Until it started to wear off at 6-8 weeks after, as the donor antibodies left the body.

She was not in school or 're-exposed' to strep- believe me, I had everyone in my house have their titers pulled, and no pets, kept that child sheltered I wanted it to work and last so bad.

We had to pay cash for HD-IVIG's, and even if I were rich, I was not willing to do IVIG's every 6-8 weeks.

It was then we looked for further infections, and found them.

 

We had tried a 5 day steroid burst before IVIG's, and it did not go well at all-

So, not every unsuccessful steroid burst equates unsuccessful IVIG or equates no PANS.

[nicklemama]

My son never had any infections turn up on the testing done through Dr T back in 2010-11. Got better on abx. Decided to do IVIG with Dr K 7 months later. Did well after IVIG but not 100%. Lots of wax and wane throughout the next 18 months but overall pretty good. Caught pneumonia, finally a infection. Went straight down hill. IVIG #2. Wax and wane and not doing as well as after #1. Found ehrlichia and anaplasma through Lyme and coinfection testing 4 months later. Had it all along. Getting right to the point...no, I don't think your son has morphed into mental illness. I suspect an underlying infection and I would do Lyme and co testing.

 

If you haven't also had Dr Tt's battery of tests, it's time to consider it. I had his testing done a second time and second time around he'd added even more to test. His local doctor did it all and that's where we found coinfections and high CMV. We are treating coinfections and he's as good as he's been since this all started.

[LNN]

I don't know if your child has Pandas, Pans, autoimmune encephalitis or something else. But I do know your child responded very well to a treatment meant to support the immune system and thought to help with pandas. I think that's reason to believe that there was an autoimmune process going on.

 

The fact the dr K hasn't turned up any infections doesn't sway me much. I think he knows an awful lot about classic Pandas. But when it comes to Pans, and digging deeper for infections beyond strep, he does "a guy look." No, not a medical term, but if you live with a guy, you know what this is.

 

If he only ran an Elisa or standard Western Blot, he cannot tell you he's tested for lyme. You can read the pinned threads for lyme at the top of the forum and see why you need additional testing via Igenex or Advanced Labs. If you haven't run a viral panel, you could be missing something. if you haven't done a blood test for candida albicans antibodies or a stool test to look for other "bad" bacteria, you could be missing something.

 

The fact that your son only has a BM once a week means he's drowning in his own toxins, regardless of what infection he may have. The bowels must move every day. I know it's hard to fight this OCD compulsion of his, but no assault, no matter how on target it is, can help him if you kill stuff but he refuses to let his body eliminate the resulting toxins. Based on what you say about his diet, there's a good possibility he's got some type of yeast issue going on - perhaps in addition to an active infection or perhaps as the only culprit. I can tell you from first hand experience, a yeast infection in kids prone to neuropsych symptoms produces a flare that can look identical to a pandas flare.

 

Methylation imbalances could also be contributing.

 

None of this means he didn't/doesn't have Pandas. It means there could be another layer you need to uncover and treat. I know you're discouraged and very worried. You thought you were out of the woods and now it's all been lost again. But others have been here before you and they've managed to recover their kids. You will too. It sounds like a second medical set of eyes might be helpful. In the meantime, try motrin (but do NOT give motrin if you decide to do prednisone - they cannot be taken together). FWIW, a 5 day burst of prednisone didn't help my son - but longer tapers did. IMO, 5 days isnt long enough and you don't need to "prove" Pandas - that fact that he did so well after IVIG initially "proves" the same thing, (again IMO).

 

But even if you have Pandas, you can still have additional issues to address.It isn't an either/or situation. My son had Pandas and lyme and pyrroluria and yeast and methylation imbalances. Try not to get too discouraged, There's a whole lot of iceberg beneath you that you haven't scratched. You will find answers. You just may need someone with a different perspective to help you explore other issues.

[qannie47]

Thanks guys...I feel like I am going crazy.....this helped a lot.

[rowingmom]

No strep, no positive response from abx...

 

While I do feel that his prior episodes (before IVIG), fit the bill, I am starting to wonder this time around. There is no infection to be found on any level, (even though he has had exposure).

 

And this constant motoric movement w/mood liability/rage, along with age regression-baby talk/declining emotional milestones...he just seems so stuck in it.

 

Any opinions?

 

Opinion? I'm afraid you already know what I am going to say .

 

Strep is not positive. No infection (??) on any level. Unless you have done proper testing for ALL coinfections, especially bartonella and the mycoplasmas which are multispecies and ubiquitous, including a clinical diagnosis done by someone who understands the clinical signs of these infections, you can't possibly say there is NO infection. Bartonella is well known in lyme circles to create psychological disturbance, raging, bipolar cycling.

 

DD had every one of your son's symptoms. They have resolved.

 

You can't say antibiotics don't work because they each address different infections and the different types of each infection (cyst form, extra-cellular form, acellular/intracellular form).

 

Most people only delve into lyme and the coinfections when they are desperate. No one believes them, psych meds don't help or make things worse, there is no where to turn. The only logical choice you have is to THOROUGHLY investigate this possibility before you give up. You ask every mother on here that has gone down the lyme path what they went through before they would even consider lyme. All because of the negative attitudes held by main-stream medicine towards this disease. You are not crazy. But the NIH and IDSA wants you to believe you (and your child) are.

 

No one jumps on the lyme bandwagon without going through agony first. And when you come out the other side, you realize that mainstream medicine doesn't hold all the answers. That you have to become your own advocate, even with the LLMDs. You can put your trust in no one doctor to find all the answers to your child's problems. That perhaps herbals and other alternatives, also denegrated by the mainstream, might offer you hope.

 

DD's illness has been a life-changing, attitude changing, paradigm changer for me. Nothing I believed about mainstream medicine do I still hold as true. The diets they tell us to eat, the meds they tell us to take.....NOTHING.

 

In my opinion, addressing detox/methylation and inflammation while treating lyme/coinfections is paramount in our kids. The infections cause brain inflammation and herxing also does. Our children seem to be especially sensitive to this and can go downhill quickly with abx if these two important issues are ignored.

 

There, I am done .

[Aggie103c]

Thank you LLM. I only wish I read this a while ago. My son had IVIG with Dr. K in mid June. He is still not better. He has an appointment with an LLMD October 31 thanks to this fourm! I suspect he also has Lyme or some other tic borne infection. You are all helping me so much!

Aggie

[qannie47]

We have not tested for Lyme/co-infections....but I think now is the time. In the back of my mind, I have always wondered about this bite he had on his back that was the size of a small golf ball, about 2 years ago, about 6 months before his first Panda's episode. At the time I thought it was an over reaction to a mosquito bite. He is fair skinned so he usually had impressive inflammation from a mosquito bite, but nothing like this before. His uncle, around the same time, rented a farm house in the middle of nowhere, (20 miles east of Rockford, IL). There is lots of woods, fields, cats running around, etc...My children, being two boys, loved it there, and they went often that first year especially. Would a tic bite produce such a reaction, without the typical bulls eye ring? Also, is Lyme in the autoimmune category?

[LNN]

I don't mean to bash Dr K. I know he's helped a lot of people. So please don't think I have anything against him. I only think he isn't your guy if you have more than strep issues. As in, there's nothing wrong with your dentist - he's a great dentist - but he isn't going to help fix your broken arm. And from what i can tell, Dr K doesn't look for broken arms. He only looks at your teeth, so to speak.

 

RowingMom - I am right there with you. It took me 6 months of denial before I'd consider lyme. Lymies were nuts, my son's WB was negative, he had classic pandas, LLMDs were quacks....and now I feel like I've been transported thru a worm hole into a parallel universe. But....in the same way I needed time to find my truth, I think others need time to find theirs as well. Not all kids have lyme, not all kids do well on the same protocols. So I encourage everyone to follow their guts and find their own paths. So qannie, keep believing in your son and stay strong. We'll all toss out ideas and support and in time, you'll get your son back. You need to know that.

[LNN]

Lyme is an infection, first and foremost. But yes, over time, it can trigger an autoimmune response in addition to the normal set of symptoms.

[nicklemama]

My son has two tick borne infections and we have NEVER found a tick on him and have never seen a rash, but apparently he's been bitten at some point. We are big campers, hikers, bikers. Outdoors in the woods and fields all summer, every summer in a state not deemed to have a Lyme problem.

[rowingmom]

When lyme was first discovering in Lyme, CT, it was because of the autoimmune arthritis (JA) it was producing in the children there.