kthomas

DS10 has had PANS for 5 or more years. In the 5 years, this is the first time that I have seen him 98% tic free, urinary frequency free, OCD free and anxiety free. It has been a long, long time since I have seen him so relaxed. That being said, he normally backslides when school starts in the fall. So Fingers are crossed. To me the big change has been finding the source of the infection. He had been on a daily dose of azithromycin, and it was making his PANS manageable, but he still had urinary frequency and tics indicating an underlying infection. So thanks to this forum and the kind parents who answered my call for help, I got contact information for an integrative doctor that suggested that my son had Lyme. IGENEX testing confirmed the suspicion and answered the riddle as to why he kept getting viruses. DS10 is 8 months into Lyme treatment, off abx and progressing. Treatment now consists of herbal abx and supplements.

I too have often wondered if there was a connection. I was strep B positive. I was put on IV antibiotics and my son was given antibiotics soon after birth. He was congested from birth and had trouble nursing because he couldn't breathe. He never ate we'll or slept well. We would elevate the head of his crib and put menthalatum on his chest and feet. At a year old he was put on allergy medicine and continued until he was five.

Fixit, Just wondering how you resolved the issues with the antiviral medicine. Having a similar reaction with the ticing, moodiness, and aggression. Did you push through and continue with Valtrex or discontinue? DS9 is a week into the rx and he seems much worse in all 3 areas. He was doing great before I started the meds.

I think the other generic is Sandoz. I too have heard that Greenstone is not a good brand to use. I had to have the doctor write the script specifically requesting the brand of azith. in order for the mail order pharmacy to fill the RX properly. On the dosing question - if a child is taking the azithromycin long term, over a year now, should the dosage be as high as the above recommendation?

Anybody in the San Antonio Area that would like to form a support group? PM me and I will start an email list.

Ds9 @ 63lbs takes 3mg as per RX by doctor. I can definitely tell a difference when he doesn't take one. Much harder to fall asleep.

Prayers are with you and your son.

Ds9 has had tics for 3 years - his are much better now that he has been on an antibiotic. He takes 250 mg of azithromycin daily - since June of 2012 (weighs 63lbs.) Finding the right combination of abx makes a huge difference. Ds9 will flare and resume some tics that had stopped when he is in the middle of an infection. It could be viral or allergy related - any type of inflammation will cause his tics to increase. My experience has been to find a doctor that will work with you and look for the right combination of abx that works for your child. Don't stop until you find the right doctor and keep looking for the underlying source of infection that is causing the tics. Hope this helps.

Thank you EAMom. My son does have a PANDAS dx from Dr. I. in San Antonio so it isn't need to prove to a dr. but more for insurance purposes. I will wait for an exacerbation to run the test. Thanks for the information and input. One more question - if the PANS/PANDAS is brought on by lyme will it show?

I have the test kit sitting on the counter and am contemplating when to have the blood drawn. DS8 has been on azithromycin 250 mg daily for almost 1 year and right now he is about 85%. Will the kamkinase levels show if the child is not in an exacerbation? I would like to use the results as a tool to show the insurance company that ds has PANDAS. He was turned down for IVIG by BCBS. Should I wait till he has a flair or go ahead and do it now?

My son was also diagnosed with TS and the comorbid condition of ADHD. Last year was a really rough year in school - spent much of it sitting in isolation because he was very impulsive and continuously bothering other students in the classroom. We tried Tinex, Clonidine, and Risperdal. What really helped was an antibiotic because his behaviors were being caused by an underlying infection. He now takes daily antibiotic and Strattera. He does have a 504 for his ADHD behaviors in case they become overwhelming for a classroom setting like they were last year. As a side note some TS children actually are misdiagnosed and have an infection which causes the TS like symptoms. My son is so much less ADHD and his TS symptoms have decreased by 80% since starting the antibiotics.

DS8 weighs 64lbs. We have done comprehensive blood test to try to figure out what the underlying infection that keeps triggering urinary frequency and low level tics. Any insight would be greatly appreciated. Test Result Flag Units Reference Natural Killer Cell Surface Ag Ab NK (CD56/16) 180 /uL 90-900 %NK (CD56/16) 7.2 % 4.0-26.0 WBC 8.7 x10E3/uL 4.0 - 9.1 RBC 4.29 x10E6/uL 3.91-5.45 Hemoglobin 12.3 g/dL 11.7-15.7 Hematocrit 37.3 % 34.8-45.8 MCV 87 fL 77-91 MCH 28.7 pg 25.7-31.5 MCHC 33.0 g/dL 31.7-36.0 RDW 13.7 % 12.3-15.1 Platlets 332 x10E3/uL 150-349 Neutrophils 58 % 40-70 Lymphs 28 % 20-47 Monocytes 10 % 3-10 Eoa 3 % 0-4 Bascs 1 % 0-2 Neutrophils (Absolute) 5.0 x10E3/uL 1.5-5.6 Lymphs (Absolute) 2.5 x10E3/uL 1.1-3.1 Monocytes (Absolute) 0.9 High x10E3/uL 0.1-0.7 Eoa (Absolute) 0.2 x10E3/uL 0.0-0.4 Basc (Absolute) 0.1 x10E3/uL 0.0-0.3 Immature Granulocytes 0 % 0-2 Immature Grans (Abs) 0.0 x10E3/uL 0.0-0.1 HSV 1and2 IGG Type 23.9 High >1.0 Positive HHV Type 6 IGM <1:10 Neg.<1:10 HHV 6 IgG Antibodies 2.54 High >0.99 Positive HHV-6 DNA AMP Negative Candida Antibodies, Qual Negative Antinuclear AB (ANA) Negative Test CMV CMVIGG <0.9 Index 0.0-0.8 LYMPH SUBSET 2PNL Result Name Results Units Reference ABCD19LY 626 /uL 200-1600 ABCD3 2649 /uL 700-4200 ABCD4H 1516 /uL 300-2000 ABCD8S 1040 /uL 300-1800 %CD19 18.4 % 10.0-31.0 %CD3 77.9 % 55.0-78.0 %CD4 44.6 % 27.0-53.0 %CD8 30.6 % 19.0-34.0 CD4/CD8 1.46 0.92-3.72 LWBC 7.2 x10E3/uL 4.0-9.1 LRBC 4.36 x10E6/uL 3.91-5.45 LHGB 12.4 g/dL 11.7-15.7 LHCT 38.2 % 34.8-45.8 LMCV 88 fL 77-91 LMCH 28.4 pg 25.7-31.5 LMCHC 32.5 g/dL 31.7-36.0 LRDW 14.0 % 12.3-15.1 LPLT 292 x10E3/uL 150-349 LNEUT 42 % 40-70 LLYMP 47 % 20-47 LMONO 8 % 3-10 LEO 2 % 0-4 LBASO 1 % 0-2 ABNEU 3.1 x10E3/uL 1.5-5.6 ABLYM 3.4 High x10E3/uL 1.1-3.1 ABMON 0.6 x10E3/uL 0.1-0.7 ABEO 0.1 x10E3/uL 0.0-0.4 ABBASO 0.0 x10E3/uL 0.0-0.3 ABIMGRAN 0.0 x10E3/uL 0.0-0.1 IMGRAN 0 % 0-2 IGG SUBCLASSES PANEL Result Name Results Units Reference IGG 932 mg/dL 572-1474 IGGSUB1 438 mg/dL 411-802 IGGSUB2 347 mg/dL 113-480 IGGSUB3 133 mg/dL 15-133 IGGSUB4 88 High mg/dL 1-84 Immunoglogulin Gam Result Name Results Units Reference IGG 898 mg/dL 572-1474 IGA 234 mg/dL 62-236 IGM 88 mg/dL 30-208 Epstin BAR VRS PNL II Result Name Results Units Reference EBVCAM <0.2 AI 0.0-0.8 EBEAG <0.2 AI 0.0-0.8 EBVCAG <0.2 AI 0.0-0.8 EBNAG 0.8 AI 0.0-0.8 Test: Mycoplasma IGM AB MYCOIGM <770 U/mL 0-769 Test: Mycoplasma IGG AB MYCOIGG <100 U/mL 0-99 Test Vitamin B-12 VITB12 423 pg/mL 180-914 Test: TSH Ultrasensitive TSH 1.44 mU/mL 0.5-5 Test T3, Total TOTT3 104 ng/dL 92-219 Test: Thyroid Antibody PAN TPAB 5 IU/mL 0-18 THYROGAB <20 IU/mL 0-40 Test: Gammaglobulin IGE IGE 15 IU/mL 0-90 Test: Gammaglobulin IGG IGG 911 mg/dL 572-1474 Test: Ferritin FERRIT 17.9 Low ng/mL 23.9-336.2 Test: Gliadin Antibody PAN GLIADIGA 4 units 0-19 negative GLIADIGG 2 units 0-19 negative Test: ASO TITER ASOTITER 57.0 IU/mL 0.0-200.0 The results below are for 3 separate test dates 8/30/2012; 10/23/2012; and 2/05/2013. The results are listed in order for the 3 test dates, then the units, and then reference range. Test: COMP METAB PANEL Result Result Results Results Units Reference 8/30/12 0/23/12 2/05/13 NA 136 138 136 mmoI/L 135-145 K 3.8 3.9 3.7 mmoI/L 3.5-5.0 CL 105 106 106 mmo/L 95-112 CO2 22 25 24 mmo/L 21-31 BUN 12 13 18 mg/dL 9.0-18 CREA 0.3 L 0.5 0.3 Low mg/dL 0.5-1.2 GLU 143 H 106 H 91 mg/dL 70-100 CA 908 9.8 9.1 mg/dL 8.2-10.8 BILT 0.4 0.4 0.5 mg/dL 0.0-1.0 TP 7.3 6.7 7.5 g/dL 6.7-8.2 ALB 4.3 4.0 4.5 g/dL 3.5-5.5 ALP 156 176 145 Low U/L 150-900 AST 26 27 24 U/L 5-40 ALT 13 13 12 U/L 10-60 OSMOC 274 276 273 mosm/kg 270-300 ANIONGAP -4.2 -6.1 -7.3 GFR >60 >60 >60 TEST: CBC W-PLT Result Result Results Results Units Reference 8/30/12 10/23/12 2/05/13 WBC 7.3 7.6 8.4 K/xxm 4.5-13.5 RBC 4.37 4.44 4.32 Mil/cmm 4-5.2 HGB 12.9 13.1 12.6 g/dL 10.5-14.5 HCT 36.9 38.3 37.7 % 32-42 MCV 84.5 86.2 87.1 H fL 67-87 MCH 29.6 29.6 29.2 PG 23-31 MCHC 35.0 34.3 33.5 % 32-38 PLT 307 325 402 K/cmm 200-473 RDW 11.7 11.8 11.5 L % 11.6-13.7

Ds8 was perscribed Clonadine at the lowest rate 1x per day in Feb. of 2011. It turned him into a zombie and he was non-functioning even on the lowest dosage and was still ticing and had major ADHD. He was then given Intuniv,again at the lowest dosage, this did not stop his tics or impulsivity. He was taken off of it and was given Risperdal for 6 months. Still had issues with AdHD and focusing. He now takes Strattera 10 mg which we have found to be very helpful for impulsivity and ADHD issues. From my experience you should not double the dosage of Clonadine as it is very sedative and should be used with caution.

Ds8 does not do well on allergy medications? We have tried Zyrtec, Allegra, Singular, Benadryl, etc. he becomes hyper, aggressive, and the last time we tried them he had ideations of death. Do you use other options to treat seasonal allergies? If so, please share.

What dosage of Pepcid are you using?

Trying Valtrex due to high IGG levels for HSV I and HHV 6. Haven't started yet, but will keep you posted.

I too would like to be a part of the group.

It is great that you are getting treatment early - everything I have read says the earlier the better. Just curios as to which insurance company you have, and if they are covering the IVIG and if it is for PANDAS or another autoimmune illness? My DS8 has had PANDAS for over 2 years. - just getting the abx was monumental. Dr. Has dx'd IViG but BCBS has denied it.

That is an excellent resource. Thank you.

Thank you thenmama for your reply. A lot has changed in the last couple of years. You have given me some good ideas to go on and I appreciate the work you have done on doing the research on peer reviewed journals. Thank you.

Just received news from the case worker at Dr. I."s office that ds8's IVIG has been denied. I am in the process of writing an appeal and am using the ideas given by thenmama. She listed United Health Care, CIGNA, and Harvard Pilgrim as covering IVIG. I have been searching the web for documentation, but have not found where their plans show PANDAS and IVIG are covered. I would love some help in getting documentation for the appeal I am writing to BCBSTX. Thanks.

My son never stops talking either, but he has stuttered. So much so that he was tested in kinder by the speech teacher. He he very verbal; use complex sentences and advanced vocabulary for an 8 year old. So it is interesting that at times he has to start a sentence 6 or 7 times before he can get it completed. It is very frustrating to him. It comes and goes depending on if he is in a flare. I think someone did a survey earlier in the year asking about autism like characteristics and verbal delays. Many people reported stuttering and repeating of the beginnings of sentences. Hope this helps..

My son never stops talking either, but he has stuttered. So much so that he was tested in kinder by the speech teacher. He he very verbal; use complex sentences and advanced vocabulary for an 8 year old. So it is interesting that at times he has to start a sentence 6 or 7 times before he can get it completed. It is very frustrating to him. It comes and goes depending on if he is in a flare. I think someone did a survey earlier in the year asking about autism like characteristics and verbal delays. Many people reported stuttering and repeating of the beginnings of sentences. Hope this helps..