kimballot

I am in a similar situation to yours. My ds14 clearly has PITAND and has for most of his life - in our case usually triggered by sinusitis. His igenex tests (before IVIG) were overall negative, with a positive band 41 (which was probably mycoplasma) and a few indeterminate bands. After a HORRIBLE post IVIG PANDAS/PITAND neuropsych exacerbation, we did an antibiotic challenge to retest for lyme. We REALLY looked for lyme... Urine PCR, Blood PCR, CD57... We did not find any positive lyme bands (except band 41) and even fewer indeterminates than we had sen pre-IVIG. However, to our surprise, the antibiotic challenge resulted in much IMPROVEMENT in his neuropsych symptoms... and this improvement went away when he went back on azith alone. So.. clinically... he does much better on lyme meds. Also, his immune system has definitely been on the decline in the past few years as he now has depressed CD 57, along with low IgG, and low IgA (which were in the normal range a few years ago) What would make these immune markers drop? Is it lyme? Coinfection? Some yet-to-be-determined microbe that is eluding our current abilities to test?? To be quite honest, I am well past the point of caring what you call it. My son does well on the lyme antibiotic cocktail and on the supplements recommended by the lyme doctor, coupled with IVIG. We will continue to do that as long as it seems to help. I am also really getting tired of in-fighting about lyme vs. PANDAS/PITAND. Some of our kids have lyme and some do not and some have infections that have yet to be named. Let's get over it and find ways to help these kids to function.

Thank you for posting this. I cannot say that I fully understand it, but I think I understand the direction it is taking. It is unusual to have a journal report on a single case in such detail - yet that is EXACTY what we need to really understand what is happening and how each of our children is unique. I can recall my own son doing VERY poorly on biaxin (clarithromycin) as a preschooler (10 years ago) and I remember asking both the allergist and the ENT if biaxin had pschiatric side effects (which of course resulted in them looking at me like I was crazy). I know many kids on this forum do very well with biaxin - especially for mycoplasma, but my son has not. This may explain that to some extent. I do plan to share this with a new neuropsychiatrist we found. Hoping he can decode this and apply as needed! Thanks!

I think you may be looking for this one that EA Mom posted last year .... but there are lots of other ones too that are pretty good... like the one for Response to Intervention (Special Education Referral).

First off - I am sorry you are dealing with this. Suicidal ideations are horrible. As far as keeping your daughter safe, I would recommend soliciting help from whatever mental health agency deals with depression and suicidality in your area. Some ideas that may help involve having a "covert" communication web among faculty and staff. For example, during change of classes teachers can stand out in the halls and know to keep an eye out for her as she passes from one room or one hall to the next. If she flashes the pass to go to guidance, the teacher should have a way to quickly email the guidance secretary and guidance counselor to let them know she is on the way - they should confirm that they received the email and are looking for her. Does your school have cameras at exit doors or alarms at exit doors so you will know if she leaves the building? Teachers with classrooms near exit doors should be aware of your daughter and have a plan of how to report/ approach her if she they see her out their window and she is exiting. It may be best to have one person in the school serve as "case manager" and that person could be the point person when your daughter leaves class at a time other than regular passing time. For example, a teacher could email the point person that your daughter just left for the bathroom - then email again when she returns. That way if she is not back at an expected time the point person could look for her. Of course, the most important aspect of this is to keep it very confidential and not make it obvious to your daughter.

I am sorry for the return of symptoms! My understanding is that the half-life of the antibodies is about 3 weeks... meaning 3 weeks after IVIG you have about half the number of donor antibodies you had at infusion. The information I am posting after this is my understanding/ view / take on what we have all been learning - and I do not know how much is really accurate, so you might want to ask a doc about it. If I am understanding this correctly, your son probably does not have any donor antibodies left floating around to help him. The antibodies probably stopped the autoimmune process he was having in May, but now they are no longer there to fight the new infection. If he is not immune deficient, then his own antibodies plus the azith should stop him from getting infected. However, as he produces antibodies to prevent the strep from infecting his body, he may produce autoantibodies as well - which can be producing his symptoms. So - he may not actually have strep, but he can still be reacting to the exposure. I don't know what other folks have done, but I would contact the doc to see if you could either increase the zith or adding another antibiotic for the time being to tax his immune system as little as possible. I would also doe everything possible to decrease inflammation for the next week or so - to try to prevent antibodies crossing over the blood-brain barrier. I am thinking of things like ibuprofen, quercetin, and such. Let us know how he does... I hope this is short-lived!

Juli - who did your MARoNS test? I thought my son had everything tested for sinus, but this is new for me. Fortunately, he is doing well now with IVIG, but he will not be on that forever... Thanks for the info!

Deb - Thanks for the info and I am sorry to hear that you are going through this. Interestingly, my daughter had mono in Dec. 2009 and her thyroid symptoms started after that. She also had mulitple strep throat infections througout 2010 and finally had tonsillectomy in Feb. 2011. Now we have the thyroid issue. Please let us know how things go with you. I wish you all the best-

Emalily - So happy to hear ... and happy early birthday

!! LIKE !!

HI Cobbie's Mom - You might find this thread interesting - it is from 2010, but was very thorough. http://www.latitudes.org/forums/index.php?showtopic=9549&hl=sherris&st=0 Also - I am wondering if your son has been checked for pneumococcal titers (low titers make sinusitis more likely), and for IgA titers (IgA is in mucus and is one of the first defenses against infection).

First off, "strepisode" should become regularly used term on this forum... Also - just wanted to ask if you checked to see if you drew blood for igG before doing steroid. I was wondering if steroid changes total IgG and subclass levels.

My "non PANDAS" dd16 has had elevated TSH - first discovered about 8 months ago. She has been on synthroid for the last 1 month and after 1 month on synthroid her TSH is at normal levels, but Thyroid Antibodies labeled as "thyroid peroxidase (TPO) AB is 56, which is high (ref range 0-20). DD has some PANDAS symptoms (very brief - and no one else would ever put this together) when sick or after immunizations. I will get her into Dr. B. I am also thinking we should do igenex lyme testing. Wondering if anyone else has experience with this and can offer suggestions/ avenues I should be exploring. Thanks so much. I don't know what I would do without this forum!

Hi Burnell- I am sorry to hear that that symptoms are returning, but I do want to put a slight positive spin on this - that you learned that IVIG did help quite a bit. You can put us in the column of "multiple IVIGs help, but do not cure the problem". My son is 14 and has been battling PANDAS symptoms with every infection since he was a baby. Although my son has had his immune system checked MANY times since infancy, last year we discovered that he had developed some selective immune deficiencies and we went to an immunologist who specializes in PANDAS (actually - upon further investigation we found out he had these deficiencies 3 years prior but that doctor did not think it important to share this with us). I don't know what has made my son's immune system become low in IgG and IgA, and I don't think science has an answer for us at this point. I do know that this IgG deficiency has made it possible for insurance to pay for IVIG every 8 weeks. So far, my son has gone 7 months without a major acute infection- which is huge. We also work with a doctor who specializes in lyme disease and she helps us select his antibiotics. I don't know if he has "lyme" disease per-se, but he certainly has some type of infection that has attacked his immune system and makes it hard for him to stay healthy. He will need to be on antibiotics long-term (as recommended by Dr. B, Dr. M and the lyme doc)... so I figure I may as well have him on the antibiotics that make him most functional, and a combination of doxycycline and azithromycin are doing the trick right now. My son is doing quite well overall. Six months ago we had to hospitalize him due to severe depression. Today he is attending school and has friends and is happy. He still has some problems with fatigue and anxiety but he is well enough along that CBT can help him. No meds for depression or anxiety, but I have Dr. M's recommended dosage on hand if we need to ask the local doc to order it. I would encourage you to see if your daughter has ANY immune deficiencies that would allow for insurance coverage for IVIG. I would also encourage you to see a doctor who understands lyme disease as they can be very helpful in selecting antibiotics. Also, if you have a choice of insurance at work, check into the IVIG policies of each insurance company. We were able to switch from an HMO with no out of network benefits to a traditional plan with national doctors that are "in network" (including Dr.B and Dr. M), and out of network benefits that cover most of our visits to other docs. Best wishes to you - keep us posted.

Oh Dear - you have had quite the roller coaster ride. I am not at all familiar with methylation cycle, but saw so many similarities between my ds14 and yours that I will be googling this tonight! Thank you! As for your appt. with Dr. B - are you going out there for an initial appointment, or were you planning to do IVIG while you were there? I am wondering why you can't to HD IVIG where you are getting IVIG now. Dr. B is wonderful, but it is difficult to chase two rabbits at once. If you are feeling positive about this new protocol, why not see if you can do one course of HDIVIG at home to see if it makes a difference and then put a hold on the IVIG for a while as you eradicate the strep (at least she can continue to do anal swabs until you see that it is going away), and try the methylation treatments. You can call and cancel your appt. with Dr. B and reschedule. It will probably be a couple of months before you can get in with him again and by then you will have a better idea of the strep situation, the methylation situation, and the HD IVIG effects. I suspect even if your son is doing better you may want to see Dr. B anyway at that point for additional input. Please keep us posted on how things go!

I don't think there is such a thing as a cure for PANDAS. I don't think tonsillectomy, IVIG, antibiotics, steroids, PEX or supplements can cure PANDAS. Each of these is a tool that can relieve symptoms and put a child into remission - if used appropriately. My son had over 3 years of PANDAS relief following his tonsillectomy. At the time we did not know about PANDAS and did not know he was harboring bacteria in his tonsils because he LIVED on antibiotics and the antibiotics kept it at bay but did not remove the bacteria completely. Every time he dropped down to prophylactic antibiotics he became symptomatic with PANDAS symptoms (never a sore throat; never a positive throat swab), with each exacerbation worse than the last - until we finally stopped antiobiotics all together to try to sort out what was happening. At that point, his tonsils turned completely white and we knew the bacteria had been lurking in the crypts of his tonsils for a very long time. After tonsillectomy he came off ritalin, came off antibiotics, and slowly regained health over the next 3 years - until he developed a sinus cyst that sent him into another exacerbation. I do NOT think everyone with PANDAS / PITAND should have their tonsils removed, but I do think everyone with PANDAS/PITAND should have a thorough ENT appointment that includes evaluation of the tonsils. I also think that kids should have very strong antibiotics for a period of time before tonsillectomy (and some docs also do IV antibiotics during tonsillectomy) to prevent an exacerbation due to bacteria or other antigen exposure.

EljoMom - so glad you had this appointment and I am hoping this will give yu a few more answers and a path to follow. I am curious about the IgG allergy - did he give you a name of the study that he was talking about? if you could get that I would be very grateful. We've done IgG in the past and I was considering starting it up again.but I would love to read more. Thanks so much for sharing!

I just want to check to make sure your son has had a thorough sinus exam. Chronic sinusitis is a frequent trigger of PANDAS and it can be hidden. It has been my son's main trigger his entire life.

My son has chronic sinusitis and allergic rhinitis. we use rhinacort (similar medication to nasonex) and it really helps him because it decreases the sinusitis. I don't think the fact that it is a steroid has much of an affect on his PANDAS symptoms, but the decrease in sinus symptoms is huge.

You've got me thinking now... I think the antibiotic you are mentioning is minocycline It is in the doxycyline family. My son has done very well with minocycline and also with doxy as compared to azith or augmentin or biaxin. We attributed this to some type of hidden lyme or coinfection (mycoplasma can be airborne or a tick coinfection). Now I am going to go back and check my son's mycoplasma labs... I would love to pinpoint what his underlying infection is so we can be more precise with treatment.

NMom - I just want to chime in and tell you how very sorry I am that you are going through this. I can feel the distress in your words. Please know that you did not make the "wrong call" this time. You made the best call you could and, in the end, I believe you will learn a great deal from this situation. Your son has excellent doctors working with you and keeping him safe. It is very wrong that you were not told about side effects, but it will make you even more vigilant with every prescription or medical procedure you have from here on out. We can all second guess our decisions but in the end the only thing that will help is if we learn from our experiences and if we learn from the experiences of others. I don't want you to become so fearful of making the WRONG choice that you make NO choice as I do not believe our children will get better on their own without any intervention. You have brought light to the seriousness of steroids and helped us all to remember that they are a tool that can be of great benefit, but are also powerful and must be used judiciously. Thank you for sharing this with us and I hope that all is well with your son's heart in the end.

I am glad to hear that blood and urine tests were fine. My son also gains weight on steroids and gets a slightly rounded face while he is on them. I am wondering how long your son has been on the steroids. My son also usually gets increased PANDAS symptoms before the relief - and that includes frequent urination. I am hoping that is all that is happening with your son. We have had two steroid tapers with my son and both times he was very uncomfortable and irritable during the loading dose, but once it stabilized he was OK and when we started to taper down he was very good - to the point where he did not want them to end once we were down to one or two pills per day. Both times we did see PANDAS relief, but that may have also been because the steroids helped to halt my son's sinusitis.

Amy - you could certainly try melatonin to get you through this. There is an extended release version (I actually just bought it for the first time - will see how it goes)... it is supposed to be better for nighttime waking. I am assuming you have been in touch with a PANDAS doc about this. I can't recall if you dd has underlying lyme. Do you think this is still from an infection or do you think this is autoimmune "life of its own" at this point? I am asking because I am wondering if a PANDAS doc might recommend prednisone as an option for you.

I am so sorry that you are going through this - especially after going through a battle once before. Clearly, you are a capable and determined Mom and I hope you can find your "fight" to prepare for this next challenge. I suggest you contact Dr. M's office first thing Monday to make an appointment. There is usually a 2 month wait. Your pediatrician sounds good and can manage things in the meantime, but get the appointment. Also, ask them if Dr. M would be willing to suggest bloodwork that you can do now that your child is in exacerbation so that she has the data when you see her. In 2 months his blood may look very different, and you want to be sure you have all the right tests now. I wish you well and I hope you will continue to post and let us know how your son does.

Dee Dee - I often feel like I am walking on a tightrope with my son. I can never relax - even when he is doing well- and as soon as he starts to slip I am picturing the fall. I am so sorry that you are going through this. I am curious about the LLMD suggestions. We did igenex testing with my son before IVIG and he had a couple of indeterminate bands, but the only thing that was positive was band 41, which may have been due to mycoplasma. My son did very badly after the first IVIG and we did MANY things to pull him out of the exacerbation - one of which was going to an LLMD, who thought we should do an antibiotic challenge and then retest for lyme. So, she put him on 3 weeks of strong doxycyline and flagyl - and everyone warned me to watch for herxing and that the symptoms would get worse before better. On day 3 of the challenge we saw rages (not as bad as right after IVIG), and anger - but it then went away. Somewhere around day 5 my son said "mom, I really like those new blue pills - they give me so much energy"... We had also started CoQ 10 around the same time as the doxy, so I initially attributed it to that. When the 3 weeks ended we put him back on zithromax and saw immediate regression. We then put him on 6 weeks of minocycline and tindamax (which are simiar to doxy and flagyl but better for sun sensitivity), and he continued to show slow progress. When the 6 weeks ended we decided to try augmentin- and again saw regression in behavior and mood, so we changed him back. Interestingly, his Igenex test after the antibiotic challenge had FEWER indeterminates than before and again had only band 41 positive. However,we did a CD 57 on him (that is usually used for adults, but he is adult-sized), and it was suppressed. Given this and his response to antibiotics, the immunlogist, lyme doctor, and pediatrician all agree that there must be some underlying infection (lyme? coinfection? something yet to be discovered?) that is brewing in his body and we are now an a new protocol of minocycline (this will change to doxycycline as soon as I get the rx filled!), and azith - with tindamax rotating in. You know a bit about my son's story so I will tell you that he has gone to school all 4 days this week (first week of school) - on time and with a smile on his face- and without me even waking him up in the morning. I hold my breath every day, but so far so good. Still lengthy rituals in the morning - but we are doing CBT for that. So— I guess my advice is to revisit the antibiotics and see if the doctor is willing to try some different combinations. I know taking medication is an issue for your dd so this may be difficult. Please let us know how she does... I will keep you guys in my prayers -

Try the NY State OT association at http://www.nysota.org/node/334