HELP! Is this PANDAS?

[kate_c]

Hi All,

 

I am VERY new to learning about all of this. I thank all of you for the information, posts and stories you have shared...they have been invaluable. My 5 year old daughter had her first bout of strep last December. Thereafter we had trouble getting her to go to pre-school without tears and meltdowns. We wrote it off as renewed seperation anxiety. She had another bout of strep in April. This set off a 2 month cycle of repeat sinusitus. After 3 rounds of antibiotics she developed a fairly severe eye twitch tic and ODD behavior issues. The tic disappeared after 1.5 months, but the behavior remained. We had crazy meltdowns all summer long. She started Kindergarten in September tic free. The second day of school she lost her first baby tooth and exploded in motor tics, verbal tics, echoing, tantrums, some odd ODD behavior (taking 10 steps backwards before getting dressed, jumping lines), morbid thoughts, and awful handwriting. A week later she had a full blown sinus infection. We are now locked in the familiar pattern of re-current sinus/tonsil problems. She has been on 4 rounds of antibiotics. Nothing touched the behaviors. She is allergic to amox. so we have been on cephalexin, omnicef and z-packs. Her titers are all normal. Her western blot for Lyme was normal. A C/T just showed sinusitus. The only thing blood work has turned up is an IgG sensitivity to casein and a high IgE (365). We have taken her off of dairy and are having allergy skin testing done this week. Due to the chronic sinus problem we just finished a steroid taper. Miraculously almost everything disappeared for the first week...then she showed some breakthrough on the tapering dose. At the moment we are tic free...but the ODD stuff remains as well as some muttering. Due to the positive steroid burst Dr. K has recommended IVIG. Should I get her tonsils/adenoids removed first? How can I be sure this is PANDAS? How much does IVIG cost? We have been to so many doctors. She is exhausted and so are we. Any advice would be greatly appreciated!

 

Thank you...

[dcmom]

Kate-

 

I don't think there are that many explanations for explosive, overnight onset of neuropsych symptoms in kids. Add that to the fact that you do link these onsets to strep, and well your daughter seems to clearly fit the clinical diagnosis of pandas. More proof of pandas lies in positive response to treatment.

 

At this point, I would follow Dr K's recommendations. I have 2 daughters with pandas, and suggest that everyone err on the side of treating too aggressively, rather than under- treating pandas. Go for the IVIG. Follow Dr K's recommendation for the tonsils. Stay on the forum. Follow what works for your kids.

 

I would also get a qualified psychologist on board. We have found that some therapy is helpful in getting rid of learned behaviors.

 

It is very possible the ODD stuff could be triggered by OCD. I would be sure that the therapist you use is trained and experienced in ERP (exposure and response prevention), this is the type of therapy that is proven to work for kids with ocd.

 

Good luck!

[KaraM]

Her western blot for Lyme was normal.

Thank you...

 

Can you elaborate on what the results were on this? Did any numbers show up at all? My dd's WB was supposedly normal, too, based on CDC standards. However, a Lyme expert just informed me that the one band that did show up on it was specific to the Borrelia bacteria (a.k.a. Lyme), so indicated that she had indeed been exposed.

 

Like PANDAS, most every day docs, don't really know how to diagnose and treat Lyme.

 

There are a lot of other infections as well that can cause these symptoms...Hopefully Dr. K will do some additional testing for those as well. is he the one that ordered the Lyme tests and prescribed the steroids?

 

Kara

[kate_c]

Her western blot for Lyme was normal.

Thank you...

 

Can you elaborate on what the results were on this? Did any numbers show up at all? My dd's WB was supposedly normal, too, based on CDC standards. However, a Lyme expert just informed me that the one band that did show up on it was specific to the Borrelia bacteria (a.k.a. Lyme), so indicated that she had indeed been exposed.

 

Like PANDAS, most every day docs, don't really know how to diagnose and treat Lyme.

 

There are a lot of other infections as well that can cause these symptoms...Hopefully Dr. K will do some additional testing for those as well. is he the one that ordered the Lyme tests and prescribed the steroids?

 

Kara

[kate_c]

Hi Kara,

All bands of the WB were normal. We have had to go through 3 different doctors to get all of the testing we are discovering we may need. Nobody around here will listen. It seems Dr. K. just wants to proceed with IVIG based on a positive steroid burst. Can you tell me more about what other illnesses you believe could cause these symptoms? Our pediatrician has basically thrown his hands up in the air. We are flying solo aside from Dr. K.

Thanks!

[KaraM]

Have you seen this document. It mentions some other illnesses.

http://www.ocfoundation.org/EO_PANDAS.aspx

 

My child had Bartonella. In addition to Lyme, was yours tested for other tick born illnesses like Bartonella, Ehrlichiosis, Babesiosis, Ricksettia?

 

Is your child still on antibiotics or has she been on and off different the ones you mentioned but all only for a short period? Many PANDAS kids need to stay on antibiotics prophylactially.

 

Where in the country are you located?

 

Hi Kara,

All bands of the WB were normal. We have had to go through 3 different doctors to get all of the testing we are discovering we may need. Nobody around here will listen. It seems Dr. K. just wants to proceed with IVIG based on a positive steroid burst. Can you tell me more about what other illnesses you believe could cause these symptoms? Our pediatrician has basically thrown his hands up in the air. We are flying solo aside from Dr. K.

Thanks!

[KaraM]

Just noticed you are in MD. Have you tried to get an appointment with Dr. Latimer? She is in MD I believe. A few of the other PANDAS docs are on the east coast...Dr. T in NJ and Dr. B in CT.

[kate_c]

Thanks for link to the article...I can't see a test for mycoplasma in her labs. Ferritin was on the low end of normal, Vit D was fine, and thyroid was fine. We have an appt. with Dr. Latimer Dec. 6th. I pray she will help shed some light. We lost some time in this battle due to our pediatrician ruling out PANDAS based on normal strep titers. I took his word for it and starting researching Tourette's...but my gut kept screaming it was more. Then I found PITANDS and Dr. K...and here I am. She has been on 3 different antibiotics, 2 of which were just 10 day courses to deal with the recurrent sinusitus/tonsilitis, one of which was azith. for 15 days. Her pediatrician won't prescribe anything further because he is adamant it's not PANDAS. Other doctors have said it's a "Gucci" diagnosis. So maddening...

 

Are the other tic borne illnesses tested via blood work at a regular lab? Did your child have Bartonella in addition to PANDAS? How does that affect treatment/prognosis? Did you use IVIG? I just found some interesting info on 14 s. pnuemoniae titers and sinus infection that sounds so much like my child. Another thing to explore...

 

I so appreciate your time! This is such a lonely illness. I wish I could give you a big hug!!

[911RN]

Thanks for link to the article...I can't see a test for mycoplasma in her labs. Ferritin was on the low end of normal, Vit D was fine, and thyroid was fine. We have an appt. with Dr. Latimer Dec. 6th. I pray she will help shed some light. We lost some time in this battle due to our pediatrician ruling out PANDAS based on normal strep titers. I took his word for it and starting researching Tourette's...but my gut kept screaming it was more. Then I found PITANDS and Dr. K...and here I am. She has been on 3 different antibiotics, 2 of which were just 10 day courses to deal with the recurrent sinusitus/tonsilitis, one of which was azith. for 15 days. Her pediatrician won't prescribe anything further because he is adamant it's not PANDAS. Other doctors have said it's a "Gucci" diagnosis. So maddening...

 

Are the other tic borne illnesses tested via blood work at a regular lab? Did your child have Bartonella in addition to PANDAS? How does that affect treatment/prognosis? Did you use IVIG? I just found some interesting info on 14 s. pnuemoniae titers and sinus infection that sounds so much like my child. Another thing to explore...

 

I so appreciate your time! This is such a lonely illness. I wish I could give you a big hug!!

 

 

I would want the sinusitis cleared to resolution before I considered any other treatments.My older son was on long term antibiotics for 6 weeks to clear sinusitis at about age 6. Went through PANDAS type symptoms at this time. Severe separation anxiety, worsening math skills etc.He had CT at beginning of therapy and CT to prove clearance per the Allergist insistance. He started immunotherapy for allergies at age 5 for skin testing that showed moderate to severe reaction to nearly all environmental allergens tested (no foods, thankfully). He took allergy shots for 5 years and no longer suffers from sinus infections as it he did chronically from age 3 to 6. He is 14 and PANDAS free. Since she is Amoxil allergic- may want to ask for Bactrim if she is not getting resolution with other antibiotics?? Allergist may be more willing to give longer term antibiotic if Peds is not?? I would investigate/ get opinion on Tonsil and adenoid removal by ENT for chronic sinusitis prior to more aggressive options also. Keep us posted on how allergy testing turns out.

[KaraM]

First off, I agree with 911RN's advice about getting to the bottom of the sinusitis.

 

A regular lab can test for Bartonella and Ehrlichiosis. I had my general practitioner order them. I imagine some others can be tested as well, but am not sure. Someone from the Lyme board I'm sure can answer that.

The big difference with IgeneX Lyme from my understanding is that they test for more bands (some that are specific to Borrellia) that other labs don't test for. I think the way they present their results is different as well....showing how you performed on each and every band tested. The test itself may also be more sensitive (I'm not positive about this, though).

 

To be honest with you, I'm not sure if she has PANDAS in addition to the tick born illnesses or it's been the tick born illnesses all along. She did have slightly elevated strep titers along with the sudden onset (over the course of a couple of months for her) and she responded to antibiotics. So that's how the PANDAS diagnosis was made. But it looks to me, based on this last visit at the LLMD, that she had the Lyme at the same time. Maybe both? Maybe just t.b.i. I'll always relate to the PANDAS family, though....

 

Interesting note, the doctor said they did a "tick drag" where they collected and analyzed a bunch of ticks. He said they found group A strep in many of them.... Maybe that's why so many of the Lyme affected kids started out as PANDAS....just hypothesizing here. No one really knows, do we???

 

Are the other tic borne illnesses tested via blood work at a regular lab? Did your child have Bartonella in addition to PANDAS? How does that affect treatment/prognosis? Did you use IVIG? I just found some interesting info on 14 s. pnuemoniae titers and sinus infection that sounds so much like my child. Another thing to explore...

 

I so appreciate your time! This is such a lonely illness. I wish I could give you a big hug!!