New to this - Introduction

[momindc]

My 9yo daughter had a sudden explosion of tics (no history of them, no family history of tics) back in March of 2012 - neck jerking, abdominal jerking, finger sniffing, etc. Our pediatrician immediately swabbed her throat and ran some titer tests - all checked out fine. She concluded that they were just tics and would hopefully go away, but referred us to a neurologist since the tics were very bothersome to DD and to us. Needless to say, the tics did not go away, and my kid who was also never hyperactive before, started to become very hyperactive at times, has had bouts of frequent urination, some anxiety and lots of irritability and anger. She was put on tenex and then clonidine to help with the tics - both helped some for a while anyway, but she would still have terrible bouts of tics that were very much bothersome to her (and us - hate to see our kid having a hard time). Back in March of 2013 neuro gave us a prescription for clonazepam as well and said she could use that on an as needed basis in addition to the clonidine.

 

Needless to say, we do not like having her on these meds which make her tired and cranky, and my gut was telling me that maybe we're missing something. DD was never diagnosed with tourette's as no verbal tics, but rather just a tic disorder - and we were told that hyperactivity is common with tics, etc. But my gut was telling me to get a second opinion, that maybe something else was going on, so we made an appointment with Dr. Latimer.

 

We saw Dr. Latimer for the first time back in April and she spent about two hours with us talking through in detail with us about DD's medical and behavioral history. She said then that she suspected that this might be a case of PANDAS given sudden onset of tics, the bouts of frequent urination, the hisory of anxiety, the history of about 4 or 5 strep infections from about 2007 - 2010, etc. Dr. Latimer asked us to do some bloodwork and to also to do the Cunningham test through Moleculara Labs after the lab opened up. We did all that and yesterday had our follow up appt. with Dr. Latimer to get our Cunningham results and discuss a plan. DD's Cunningham results were "PANDAS/PANS highly likely" and her specific test results were:

 

Dopamine D1: 1,000 (normal is 500 to 2,000)

Dopamine D2: 16,000 (normal is 2,000 to 8,000)

Lysoganglioside: 160 (normal is 80 to 320)

Tubulin: 1,000 (normal is 250 to 1,000)

CaM Kinase II: 195 (normal is 53-113)

 

We are now working to get DD started on antibiotics. Our pediatrician wants to see DD on amoxicillan.

 

Thoughts on DD's Cunningham test results? Thoughts on antibiotic?

 

I've been lurking on this site for a while trying to educate myself as we considered that DD might have PANDAS - and now am joining your "club".

 

Thank you.

 

momindc

[Chemar]

Welcome to the forum

 

I am just bumping your post up for replies.

[PowPow]

So glad you got intoDr L and are getting tx. Antibiotics seem to help, abx & steroids help my little ones's tics and anxiety.

I am in Northern VA ( there are LOTS of us here on DC metro area)

You are on your way toward getting your child better. That is fabulous!

[Missmom]

Sounds like you are on the right track. Can dr. L give you a rx for antibiotics? I was just wondering why your pedi is writing the prescription and not dr. L. The reason I ask is because a lot of us on this find that amoxicillin is not effective in fighting this as some of the other antibiotics available. When my son was first diagnosed we did ten days of augmentin and his tics completely disappeared. Then we saw a different doctor who switched him to amoxicillin and the tics came roaring back until we started augmentin again. I hope it will work for your child, but don't be discouraged if it does not work you may just need something a bit stronger. Anyway, welcome to the forum.

[Crunchfly]

We are also in the dc metro area. I know there are at least 2 other kids with PANDAS at our elementary school. The regional concentration here makes me wonder if there is something to the theory that certain strains of strep lead to PANDAS while others don't.

Edited June 13, 2013 by Crunchfly

[momindc]

Thank you all for your thoughts. Appreciate it. It does make you wonder why so many of our kiddos in the DC area are plagued with these issues.

 

Dr. L is prescribing the antibiotic, but our pediatrician is advocating that it be amoxicillin because she believes it would give DD the best shot at resolving symptoms, assuming this is strep issue. Ped says that penicillin or amoxicillin is the antibiotic of choice to treat strep infections with very little if none documented resistance, and that if someone is allergic to penicillin or amoxicillin (which DD is not), she said they would then use keflex/cephalexin or clindamycin.

 

Thoughts? Ped is a trusted part of the team who only wants to maximize DD's chance of recovery, as does Dr. L, but ultimately we'll defer to Dr. L as I know she's been dealing with PANDAS/PANS for a long time. I just thought I would reach out to you all as well for your thoughts since you've walked in my shoes already with your kiddos, and you might also have some thoughts/insight that we should take into account.

 

Thanks!

[pr40]

perhaps I did not read carefully enough but I did not see tests for any other possible bacterial cause like lyme, myco, etc.

did you do those tests?

[momindc]

Just realized that Dr. L may not have had the results of those tests when we met with her - it appears the lab may not have sent them on. Have just sent them to her to be sure and to our ped as well. Results (typed in) are below:

 

Immunoglobullins G, A, M

IGG - 999

IGA - 122

IGM - 47

IGE - 9

 

Lyme Disease Ab - Wblot

IgG/IgM

Lyme Disease Ab, IgG WB - Negative (reference range: Negative)

Lyme Disease 18 kd IgG - Nonreactive

Lyme Disease 23 kd IgG - Nonreactive

Lyme Disease 28 kD IgG - Nonreactive

Lyme Disease 30 kD IgG - Nonreactive

Lyme Disease 39 kD IgG - Nonreactive

Lyme Disease 41 kD IgG - Nonreactive

Lyme Disease 45 Kd IgG - Nonreactive

Lyme Disease 58 kD IgG - Nonreactive

Lyme Disease 66 kD IgG - Nonreactive

Lyme Disease 93 Kd IgG - Nonreactive

 

Lyme Disease Ab IgM - Negative (reference range: Negative)

Lyme Disease 23 kD IgM - Nonreactive

Lyme Disease 39 kD IgM - Nonreactive

Lyme Disease 41 kD IgM - Nonreactive

 

Mycoplasma pneumoniae Ab - IgM

M pneumoniae IgM Ab - 524

Reference range: <770

Unit: U/ml

(NOTE)

Reference range:

<770 U/ml Negative

770-950 U/ml Low positive

>950 U/ml Postive

 

Mycoplasma pneumoniae Ab -

IgG

M pneumo Ab (IgG) - H 3.73 (THIS IS THE ONLY RESULT HIGHLIGHTED ON THE LAB REPORT)

Reference range:<=0.90

Unit: ISR

(NOTE)

Reference range:

<=0.90 Negative

0.91-1.09 Equivocal

>=1.10 Postive

A positive result indicates that the patient has antibody to Mycoplasma. It does not differentiate between an active or past infection. The clinical diagnosis must be interpreted in conjunction with the clinical signs and symptoms of the patient.

 

XXXXXXXXXXXXXX

 

Thoughts?

 

Thanks!

[peglem]

Augmenten is amoxicillin w/ clavulinate (okay, not spelled right) added in to make it more effective. I'll bet your ped would be willing to rx that instead if you asked.

[norcalmom]

Did your daughter ever get treated for pneumonia?

 

If she was never treated for pneumonia, than apparently she had it and never got treated for it. It is possible (probable ) that she never got rid of it. IgM is the antibody that reacts at the beginning of the the infection. In some people it will stay high no matter how long they have the infection. When the infection resolves it goes away. But, for many if not most people, it they have the infection for a long time, or if they get infected multiple times, the body does not make IgM anymore.

 

IgG goes up after the initial infection, and can stay raised for years. It means that your body mounted an attack to the infection, and is still spitting out the antibodies to the infection. When it is very very high, some researchers think it means the body keeps pumping it out, but the infection is not going away, so it keeps climbing.

 

The only way to tell if she still has an active infection is to retest, or to do a mycoplasma PCR test (and guess what - neither test is all that great - welcome to my world!).

The IGG can fluctuate a bit, and it takes time to see it heading in one direction or another. Your daughters 3.73 is high, but not that high. My son's is 11.50...but he likely had it for a long long time, and it just kept climbing.

 

As far as I know augmentin or ammox. is not the best treatment for mycoplama. It may be somewhat helpful in the beginning, but the myco - if that is what you are dealing with - will likely return after a 2-3 months on it.

 

You should discuss verifying if mycoplasma is what Lattimer suspects the most, or strep. Augmentin is great for strep. If Lattimer highlighted the myco, ask her why, and if you should retest it to see if it is going up or down and when. realize that the Augmenin may make it go down for while, but most likely will not resolve it. Do a little research on the antibiorics for MycoP, and ask her about those and if she thinks they may be better. She may do a combination of them.

 

Doxycycline has been good for my son for this, but he has sun sensitivity during summer has to be off it. All antibiotics come with pros and cons. with doxy, teeth staining - if they still have baby teeth is a risk (I don't know how high that risk is). We did not have teeth issues with it. Its hard on the stomach. DS took Doryx, a time release better for the tummy version, but pricey, version of Doxy.

 

Did you get a vitamin D3 level taken?

 

Welcome to the forum momindc!

[Crunchfly]

Our ped has given 2 weeks of Augmentin followed by 30 days of amoxicillin, and it has worked for us. My son's tics went from constant to once or twice a day before we finished the Augmentin, and stayed away on Amoxicillin. The only downside in our case was that 2 days after he finished the amoxicillin he has strep again and the tics returned. He is back on Augmentin, the tics are very rare and not everyday, and he is finally culturing negative for strep so we are about to try dropping back to amoxicillin again.

[peglem]

If the Myco is a concern (personally, I think it should be) then you should try azithromycin or biaxin (clarithromycin) which should sddress both strep and Myco.

[Hayley]

We are also in the DC Metro area (Maryland side). My daughter saw results with augmentin. HOWEVER, she just got a break through strep infection while on a full daily dose of augmentin so there might currently be something floating around here these days that is augmentin resistant (at least in our community). Omnicef (clindamycin) cleared up that strep quickly.

 

Back to original onset, we had tried several other options before getting to the right dose of augmentin (Dr. L got the dose right. Prior to that we were going with our pediatrician who was supportive but not experienced with PANDAS and another local neurologist who was not at all helpful). With the first couple of options we tried, we saw very minor changes, but within 48 hours of the augmentin at a full dose (450 mg 2x/day for our 54 lb 7 year old) we saw a notable reduction in symptoms (she didn't have tics, but the big change was in emotional lability/rage). Have you started the abx? Any change at all?

[pr40]

here is one thing about movement disorders we experienced. dd had restless leg syndrome which was her first post-strep symptom. it disappeared when she stopped dairy. she is not allergic to dairy. she is also on a gluten free diet though she does not have celiac.

I don't know how to explain the connection btw RLS and dairy.

[Crunchfly]

here is one thing about movement disorders we experienced. dd had restless leg syndrome which was her first post-strep symptom. it disappeared when she stopped dairy. she is not allergic to dairy. she is also on a gluten free diet though she does not have celiac.

I don't know how to explain the connection btw RLS and dairy.

RLS caught my attention. My ds sometimes has these episodes in the afternoon/evening where he freaks out because he HAS to move his legs. If he can run and jump it resolves in about 15-20 minutes. If he is in a situation where he can't, it's a meltdown and he swears that his legs feel electric and he can't stand it. RLS was the closest thing I could find...but he sleeps like a rock (although he twitches/jerks on and off all night long). I never associated it with his PANDAS issues before, but your post has my gears turning.