saidie10

Hi Grace, we have had success on a VERY LOW dose of zoloft. I hated to put DS7 on it but the OCD issues he was having were heart wrenching and terrifying to watch him go through. According to the Neurologist we were seeing at the time that was the best protocol for him even if we were looking at a PANDAS dx. I know there are definitely differing feelings about SSRI's and believe me we HATED to put DS on it but it truly was best for him. We will wean him off 4-6 wks post IVIG if everything else is going well (tics reduced or gone; anxiety reduced or gone; rages reduced or gone, etc.) Give me a ring anytime! Cindy

Hi and welcome to a place where you will get a ton of support and friendship. It really sounds like you have stumbled onto something that could unlock the answer to what your son has been going through. First off, I am not trying to discourage you from the appointment with the Neurologist, but many of us on this board have had no luck with them. You are definitely doing the right thing by finding out where they stand on PANDAS before you waste your time and money. You may not get a straight answer if you ask them "if they believe in PANDAS" so what worked for me was to ask the Nurse or the Doctor if you get to speak to them "if PANDAS is suspected, what tests would you do to help confirm the diagnosis and or what treatment options would you offer?" This will certainly give you the answer you need before the appointment. It seems that I see more parents taking their children to Immunologists since it is an Autoimmune Disorder. This is where we finally had success with a doctor. Have you looked over the list of PANDAS friendly doctors on this website? Where do you live?

Took the survey...that was quite long!!

Vit C is ZERO . Yes, its extremely imp in fighting off infection, inflammation, allows body to absorb iron 80% more efficiently if you include vit C high foods in each meal, imp for wound healing, etc. Plus there is a long list of things that could potentially go wrong with a vit C deficiency (scurvy etc) .The body doesnot produce vit c and is dependent on what we eat or supplement. Please do look into this this stat and start on supplements. Why urine? why not blood llevels? Jodie The thing I don't understand is that they eat very well rounded diets and take vitamins...they do get lots of vitamin c in what they eat so why would there level be 0? Are they not absorbing it for some reason? As for the urine test, this was for Dr. R and I am not sure why urine and not blood. Maybe blood we should test there blood? Would this be in a CBC? No CBC is just complete blood count your red cells and white cells etc. Vit C serum levels in blood will have to be tested. Quest does a serum level others maydo whole blood, doesn't matter. Its very unusual for kids on a healthy diet and getting multivit supplement. Very puzzling. Maybe it was a mistake. Also many things are not supposed to be in urine.Did your doc test to make sure there is no vit C in urine or was he actually testing for Vit C levels. If yes, then urine testing is very unconventional. I am looking at the test and it says the interpretation of Low or Low Normal Ascorbic Acid (Vitamin C) indicates a dietary deficiency and/or increased utilization of antioxidants. Hummm maybe I should talk to their pediatrician about this...the other doctors didn't seem concerned?

Vit C is ZERO . Yes, its extremely imp in fighting off infection, inflammation, allows body to absorb iron 80% more efficiently if you include vit C high foods in each meal, imp for wound healing, etc. Plus there is a long list of things that could potentially go wrong with a vit C deficiency (scurvy etc) .The body doesnot produce vit c and is dependent on what we eat or supplement. Please do look into this this stat and start on supplements. Why urine? why not blood llevels? Jodie The thing I don't understand is that they eat very well rounded diets and take vitamins...they do get lots of vitamin c in what they eat so why would there level be 0? Are they not absorbing it for some reason? As for the urine test, this was for Dr. R and I am not sure why urine and not blood. Maybe blood we should test there blood? Would this be in a CBC?

So the doctors have not focused on this, but I have to think that it can't be good that both my boys have 0(ZERO)Vitamin C in their system. Isn't Vitamin C important in fighting infections? This deficiency was determined in their OATS Urine Test ordered by Dr. R. Does anyone have any thoughts on this?

Thank you both for the quick responses. DS5's Anti-Neuronal Antibody Titers from the Cunningham Test seem to be within normal range. DS7's D2 was 16000, very elevated as was his Dopamine from his Neurotransmitter Urine Test. In fact, all of his Neurotransmitters were very elevated. So basically, all of DS7's tests were pretty cut and dry that something was going on in his brain; that something was going on with his immune system; and that strep was the culprit. I know that strep is the culprit for DS5 too, but on paper, he is not sick yet other than the high CamK. Guess the only option is to wait and see and to be prepared with a plan in place?

Well you have come to the right place for help! Sorry you are dealing with this though. Any neurological issue with a child is so very scary and I hope you find the answers you need to help your child heal. I would start with the PANDAS route. If you have an open minded Pediatrician, you could ask for some initial testing (strep titers) and even abx if they are willing to try. If not, find a PANDAS expert near you and get an appt. ASAP. I am sure some others on the board could offer some good advice on who to see in your area. I am in Texas.

We did the testing with Dr. R and did not go back to see him after that because we were trying to find a doctor closer to home which we did. We did speak with his Nurse and he had only advised to treat my DS7 with the immune deficiency and do IVIG. At the time we did not have the Cunningham Test results back on either son so I actually have not spoken with Dr. R since those results were back so maybe I should? Maybe he would do abx? During our phone consult with Dr. K, we spent most of the time talking about DS7 and IVIG, etc. He said DS5 would be a wait and see. It is my understanding he does not put a lot of weight in the Cunningham Scores. We went to Dr. I for our DS7 and that was really our main focus. Because DS5's numbers looked the way they did, there was nothing to treat at the time. Again, I really worry about the high CamK...it has to mean something!!!

I hope someone can offer some advice on how to deal with my other son, DS5. We wrapped up two day IVIG on my DS7 two days ago and keeping our fingers crossed for continued healing. DS5 is next on my radar... We tested both boys with Dr. R in Dallas in June and DS7 showed IgG deficiency while DS5 was a mere 5 points away from a deficiency both in SubClass 2. DS7 had high Anti-DNaseB titers that rose in response to an exacerbation of symptoms in May when his brother had strep. DS5 had separation anxiety, chorieform movements in his fingers and hands, baby talk, increased anger and anxiety, and obsessive compulsive thoughts and fears during the strep infection in May which did get better after abx treament of 10 days. His tests from June though indicated that his ASO and Anti-DNaseB were already down within normal range. Finally, DS7 tested 164 on CamKinase, and DS5 tested 179. Both Dr. K, Dr. R., and Dr. I. said at this time we should only treat DS7 which we did with IVIG two days ago. None of them felt that DS5 should even be on abx to prevent infection. I must say I am very worried about the future of DS5 though. I feel like the next strep infection could send him over the edge! His CamK was 179...that seems high compared to some others on the board who definitely have PANDAS dx. I am very worried about him now that strep central school has begun! I was thinking of emailing Dr. Cunningham for her advice. Any other suggestions? Thanks so much for the input... Cindy

So sorry your son and family are going through this. It is truly heart wrenching to see your child suffer. Have you talked to Dr. B yet? Is the Tenex for sleeping? We give our DS Melatonin and it worked wonders for us! He went from getting 4-6 hours of sleep to up to 10 and that really helped with mood and tics...

Wish I had some good advice for you like you did for me I know nothing about lyme and the other tests you speak of. Sending positive thoughts your way for healing...

Thanks for the reply...I feel so much better reading that it is normal! I will say his sleeping has been much better the last few nights. He has slept until 730 every morning when he is usually up by 6am! I am also trying not to read too much into it, but the last two nights he has gone to the bathroom one time and got in bed. He usually gets in bed and gets up 5-7 times or more to "potty" again. Maybe it is the placebo effect that Dr. Infante talked about (I hope not) but I have not said anything to him about it. He just gets in bed and goes to sleep. I am floored. It has been well over 6 months or so since he did not get up to go potty again and again, and again at night once he got in bed. Another moment of joy was when I was holding him yesterday in in my lap and he was sitting *still*...he does not sit still. He is constantly moving something on his body, whether it be his fingers or his toes! Sorry you are still experiencing the nighttime separation anxiety. I hope that improves soon. Are you seeing improvements in other areas?

Just wondering from others who have experienced IVIG. My DS is still having some headaches (we are two days post second day of IVIG) and is sleeping right now during the middle of the day which is SO NOT LIKE HIM. Is this normal? Thanks for the advice!

so glad you had such a great experience and your dd is doing well! it is so nice to have an amazing doctor on your side...you can just sit back and be mom for the day instead of researcher extraordinar!

So glad you have such an understanding and caring Principal! Sounds like you are in the right place. Praying things will continue to improve. Maybe today was just a blip!

I am completely flabbergasted and speechless too! Unbelievable!!!! I am so so sorry you and your daughter had to go through this. This is completely unacceptable.

I know there is another parent on here from or near San Marcos Texas....PM me!

Today we got the best news! Not only did my DS7 finish his second day of IVIG (did not go as well as the first...pretty bad headache and vomiting), our Case Worker with the Hospital who has been working tirelessly to get an answer from BCBS of Texas about covering or denying the IVIG walked in at the 11th hour with our answer - approved! I absolutely knew that it would be denied based on what I have read on here and online about BCBS. I was shocked...elated... ecstatic! Our Doctor insisted on putting PANDAS as the cause of my son's illness, immune deficiency/disorder, etc. I told him I was pretty sure it would be denied if he did this, but he insisted that his ethics would only allow him to put the actual thing we were trying to get the treatment covered for. So, there it was, plain as day in his cover letter to Blue Cross...PANDAS. I have sat in fear for a month, knowing it would be denied because of this, but NO, we have an approval!!!!! Along with studies, blood work, etc., this Case Manager also sent along the bulletin from November for United Healthcare stating that IVIG was specifically approved for PANDAS. I think this helped our cause! Don't stop fighting the good fight you wonderful parents!!!! The tide is a changing

He did Swedo's dose. I hope it works!

First and foremost, IF YOU ARE LOOKING FOR A PANDAS FRIENDLY DOCTOR IN TEXAS, OUR EXPERIENCE IN SAN ANTONIO HAS BEEN TOP NOTCH. My DS7 received his first dose of IVIG yesterday of what I told him was hopefully his magic medicine! The staff at this hospital was top notch. The facility and infusion rooms, top notch with LOTS for the kids to do. This doctor has been doing IVIG for 25 years and this is his first IVIG on PANDAS child. He is working with a wonderful Neurologist who we saw last week who also is a believer and forward thinker! He basically told me that my son is a case study for him which I am fine with! If it helps my son and other children can some see this man and his team and get the much needed help then study my son, by all means! He also mentioned to our sons Nurse when we were all talking about PANDAS yesterday that another treatment being used for PANDAS was PEX. This Nurse doing my son's IVIG is the only one in the hospital who can do PEX! I think he would even consider that as a treatment as well if the reasoning was there! Also, after a month of this doctor saying "I still have not found compelling evidence to justify abx post IVIG", I walked out of there yesterday with a prescription of 250mg for a year! I bombarded him with information early this week from this website and phone numbers of PANDAS experts (Dr. T, Dr. L, Dr K etc) whom he could call for colleague to colleague advice. He was also very appreciative of the link I sent him to the NIMH Directors Blog (thanks Vickie!) He handed me a prescription yesterday during out meeting and told me he appreciated all my hard work! I told him I had lots of other parents to thank for all the great advice I have received on this online community!!! THANK YOU guys so much! I told him if I put his name out there he would likely be bombarded with patients. Although at this time he did not want me putting his name on the website, he certainly said referrals would be welcome! PM me if you want the contact information!!! Lastly and MOST IMPORTANTLY, my DS is doing soooo good. He really tolerated the IVIG well. Slight headache last night but nothing serious at all. Is staying very hydrated which I guess is helping (thanks for the advice on that guys...) Yesterday morning was so emotional for me. I fought back tears all morning. Two long years of not knowing, feeling helpless, looking for help, misdiagnosis, and watching my poor child suffer brought me to this moment. It was emotional from nerves for him and happiness for him. I am sure you guys who have finally gotten the IVIG or PEX, or abx for your child after many years of fighting for them know EXACTLY what I am talking about . All my best to everyone fighting the good fight!

Good for you! What an amazing young woman you are! Your Mother should be so proud of you in my opinion! Keep up the good fight!

I am so happy for you! So great to hear such positive things the night before my son's IVIG!