beeskneesmommy

Eljo: I PM'd you with everything I got. There is much more that can be done for your kiddo. I have had a son that, off and on for 2 years awakened in the morning screaming and crying, treated me like poop on a daily basis, went thru weeks off and on over those 2 years hitting or kicking me sometimes up to 5 x a day and basically argued with everything. Getting clothes on in the AM was such a struggle on a daily basis - never mind trying to brush his teeth even 1 x day or even eating a decent meal. Basically everything I asked him to do was met with opposition and severe irritation. It was ###### and I felt like giving up many days - I was negative and a real downer around my peers. Well, that seems like a bad dream to me at this point. I never know if I am going to awaken one morning and randomly, the PANDAS beast will be back. I hope with all of my heart that we have beaten it. But the bottom line is that I have worked like a dog and travelled like a hobo and sold important family heirlooms and wormed my way into PANDAS Dr.'s offices, refusing to take no for an answer because I will not ever give up on my son. And guess what? It's paying off! He is happy as a clam and hanging out waiting for his chicken nuggets on my bed right now. No twitching, tics, hyperactivity, irritability - in fact, he just spontaneously told me he loves me...for about the 10th time today. Time to get up that hill and start kickin' it hard, Girl!

It is not unusual that it can take the run of 10 days for the tics to start to subside. When using Cephalexin or others in the past when my son was very little and at the onset of tics, he did not improve within the first several days, but at the end of the run of abx. Later, when using Azith or Cefdinir, he bagan improvement very rapidly, within the 1st 3 days. Not sure if it was the type of abx or the age difference when they were used or perhaps where he was in the PANDAS journey. After his initial dx at age 2.5, my son became very ill with acute exacerbation of PANDAS at age 4. This was after 1.5 years of short term abx used to treat Strep infections. He should have been on long term, ongoing abx from the start. However, since his acute onset at this time last year, thru a few different abx choices (daily) and in depth testing for co-infections with Dr. Bouboulis in CT, Our son is close to 100% and has been asymptomatic for 2 months with only a couple of 1 day "dips" here and there. Omega 3's are known to reduce tics over time. We use Omega 3 Gummy bears and try to get our DS5 to eat wild fatty salmon 1-2 x wk. This really sounds like PANDAS, especially with sudden onset on tics after none the 1st 6 years of her life (I think I got that right). When tested for co-infections (Lyme & Bartonella) was the regular western blot utilized ot does Dr. T use a private lab with more thorough testing (like IgeneX)? Dr. T (if I am thinking of the same Dr. T) is a well known PANDAS specialist and I would assume that you are in good hands. best to you and your family and don't give up hope - this can be beaten! -Kath

I can only speak to my experience with Dr. B. He dug deeper than my son's other PANDAS specialist and found underlying co-infections. he started my son on a combo of abx with amazing results. My son has had only 2 day long minor flare-ups over the past couple of months. My family unit feels normal for the first time in a very long time and my son is (except for the 2 days) asymptomatic after being quite ill with PANDAS for half of his life. We have treated PANDAS with abx only, never IVig or PEX. Dr. B is optimistic for a full recovery. That being said, my son is very young (just turned 5) and he has no other dx like Autism so I think his case may be a little more straight forward (sounds crazy for a kid with Myco, Bartonella, Lyme and classic Strep:PANDAS). If Dr. m refers to Murphy, i have only heard/read good things and she is pretty well known in the pioneer PANDAS circles...good luck! Kath

PS, I think dr. B would be willing to test for further allergies. It is an ongoing dilemma that he recognizes. thanks!

Thank you - I had not thought of airborne spores. How did we ever survive as kids? I never remember having any friends with allergy/asthma in the late 60s and 70s! It seems like it's not a matter of just increased recognition, but truly an increase in kids with allergies, etc. Yet another problem to tackle. If I could have a small wish right now it would be for all of us to have a month with a personal secretary, an on-call nanny and a professional house cleaner (that's the small one, you KNOW what the big one would be We are headed to the beach for a week on Sunday. The house we are renting has a no pets policy and the weather is supposed to be sunny and clear. I will be very curious to see what my son looks like after a couple of days in a different environment, different vegetation on the coast, etc. The major cleaning will have to wait until we return so I can enjoy my root canal scheduled for this afternoon!! Hey, at least I still have a sense of humor Thanks again, best to you and yours, Kath

Oh so sorry - I hear the pain and despair! I remember that from when my DS5 was very, very sick....and now he is not. We went to Dr. B in CT. We feel that he is very thorough and covers all possibilities for infection in his diagnosis. I would NEVER have believed that my son had the coinfections that apparently has. I was shocked when they were positive...in a numb state and doubtful when yet more abx were prescribed...then elated to see my son improving and returned to us again. Do NOT give up! It is worth this last cash and effort to get a comprehensive dx. If it turns out that pandas is ruled out, you will know and can go from there. If it turns out that there is something impeding a pandas recovery, and your daughter can get what she needs to start her journey out of pandas, then you will be elated that you did this. I have great faith in Dr. B. Why not make an appt. now, as he has a 2+ month wait? You can always cancel, but at least you will be "in". You are NOT alone! -Kath Philamom - how incredibly awesome for you to offer a stay at your home! I wish I could do the same and have thought of it many times, but NC has little offer in the way of pandas docs. Kudos to you and your family!! Kath

Look, my son was really, really sick....and now he is not. You will make it thru this - you just have be extremely proactive (constantly) and advocate like crazy for your baby! This has been the battle of my life (and hopefully, my son will never know and have very little memory of it) but it IS a winable battle if you stay with it - just keep on plugging! Many, many warm thoughts your way - Kath

Thank you. He spends a lot of time in our bedroom and out master bathroom always seems moldy to my standards (we used to live in Santa Fe NM and then Denver, prior to NC, so we are not inclined to moist climates). I have been terribly short on time to tackle big cleaning, but I am slowly going to do the fine tooth comb thru the house and also get air purifiers for each room. I have been concerned about mold and when I lived in Seattle for 2 years in the mid '90's, I, myself had pretty strong allergies to mold. I am not really sure why neither the blood test or the scratch test did not include mold, but perhaps that is where we need to go next...

I say "If it is pandas" as a qualifier - stems from old habits. I am a psychotherapist (non-practicing at this time d/t being a SAHM) and I try to make sure not to make assumptions when I know only the little that I have read. It does sound like pandas and I support you. Re: dosage - it varies by age/weight. My son is 5 and he is taking the typical therapeutic dose that a 40 pound 5 year old would take for active infection. Try to get a therapeutic dose, not just a low dose prophylaxis, asking specifically for the dosage that your doc would utilize if he were treating active Strep with Augmentin. In addition, if you have not read Saving Sammy, by Beth Malobey, you should pick up a copy. She is a champion for pandas patients and their parents. It is an account of her son's onset and eventual recovery. I also recommend that you read the post entitles "an unexpected Turn of Events" on this forum. It is loaded with info and links that will help you. Positive thoughts to you and yours. We are in your corner and keep up the good work! -Kath

Maggies: You are NOT alone! So glad you found this forum! Our kiddo had a mild onset at age 2.5 and I did not know about this forum until over 2 years later. If it is pandas, it is imperative that you get your kiddo on abx immediately. There is a small percentage of kids who are able to beat pandas with antobiotics alone, but only when it is caught and medicated very early. Our son started very mildly (eye tics) and, despite treating the multiple Strep Throats with the typical 10 day run of antibiotics, eventually had a major, acute onset after a tonsillectomy while actively infected with Strep Throat. It has taken us almost a year to get him back to where he was 2.5 years ago. He has been seriously affected by pandas for half of his life! Many of us have to travel for help - we are in NC and travel to Philly and to CT to see our son's pandas specialist. It is imperative that you see a pandas specialist and that you make an appt. immediately, as they often have 2+ months wait to get in. In the mean time, if you have a sympathetic ped., perhaps you can get your kiddo on an ongoing (by that I mean not just the 10 day run) therapeutic dose of Augmentin. I do not want to alarm you, rather, stress the importance of acting NOW. I would get in with Dr. Murphy if you can, ASAP, and bite the bullet. You can get started with help and continue to work on finding a pandas specialist that takes your insurance in the mean time. Good luck!

Well, 1 year ago after my son fell to pieces post tonsillectomy while infected with Strep (yes, I asked the Ped x 2 and the ENT x 1 if we could have a run of abx prior to the surgery - they didn't feel it was necessary...hah), I stopped the "watchful waiting" as you call it, and went directly to CHOP where Jo Elia still has my son under her wing. We added Dr. B in CT to the mix and we are in good shape as a result....I believe that we are better off because we made sure that DS was medicated w/abx immediately upon each Strep infection and we were able to recognize immediately when something was wrong and took action. It's just too bad that we didn't know about PANDAS and at the time of dx, there was very little out there. We had to rely upon Peds who told us that he "would grow out of it" and "not to worry" - again - docs who didn't know any better and basically tried to quell our concerns that our son had this BIG autoimmune d/o, NOT just Strep throat. I shudder to think of all of the 1st time parents out there that are still being told that their kiddo's behaviors "are just a phase" and "terrible 2s". I was lucky in that i had some formal training to recognize OCD and tics quickly...

At this point, we are not planning IVig as the abx seem to be doing the trick. Did you get CAT scans for the sinuses only or were they also for the PANDAS? I just do not know what else I can do - he is sleeping poorly at night but I cannot find the allergens!

Phila: yes, i canot give my son benedryl, Zyrtec, any of it! There is a cold med from Whole Foods called Umka that he can tolerate - it just helps break up the mucus. However, i generally only can use "Little Noses" saline spray with him. I just filled the Nasonex in hopes that he will tolerate it well, as his PANDAS symptoms have subsided at this time, but I will watch him like a hawk! We are alos going to the beach for a week on Sun., so maybe I will just wait and see what he looks like there - different vegetation, no pets, etc. Can Chronic Sinusitis survive through the constant barrage of Augmentin 2 x D and Axith 1 x D?

Phillymom: I can identify with your story all too well except that my son was 2.5 at the time of recognized onset. Sadly, I kept going from one pediatrician to the next, trying to get the PANDAS addressed, rather than just throwing a 10 day run of abx at the Strep (which occurred over and over again). They ALL AGREED that my son had PANDAS, but they ALL completely blew me off when I asked about treating it directly! I took him to a neurosychiatrist at Duke Children's hospital who said "It's suggestive of PANDAS, especially given that the symptoms subside when abx are administered....COME BACK IN 6 MONTHS TO SEE ME" and he sent us away with nothing. The RAGE that I feel at times when I think of all of these medical professionals treating me as if I was some sort of a pest, rather than doing their homework and treating my son, is unsurpassed! The piece that you wrote about lulling yourself into a false sense of security rings very true for me - when doctors are downplaying the situation (or just plain ignorant or lazy), it's easy to feel safe when the symptoms subside between Strep infections. It's even easy to go into denial altogether....until all H--- breaks lose and you have lost your otherwise normal child into an abyss the likes of which you would never have imagined! Wow - I guess I needed to get that out. Your post just brought back all sorts of bad memories...

nevergiveup, I second that! If we had understood that were even PANDAS experts out there when my son was 1st diagnosed, and not been encouraged to downplay the illness by a slew of pediatricians (and 1 neurospych at Duke Children's Hospital), we may have had more options or even been way ahead of the game at this point. I would have RUN to a specialist had I had the knowledge that PANDAS was as serious as it is and had the tools to do so! Instead, we did not see a PANDAS specialist for 1.5 years post diagnosis! This was in crisis and luckily, after I had read Saving Sammy and Beth helped me get hooked up with CHOP. Every time I see a new onset mom, I advise to make an appointment with a PANDAS specialist --- after all, you can always cancel it! It's no committment! However, if you wait, with the back up being 2+ months for every good specialist out there, you put yourself behind the game even further! That is all I am going to say on the matter - I don't want to be a pest. Just HATE the idea of ANYONE going thru what we all have!

Well, no, because pediatricians have been blowing us off forever over this. If you mean looking up his nose and saying that it looks slightly irritated therefor must be allergies, yes. Dr. B is aware of it and my impression is that he feels that the masive doses of abx that my son is on will take care of any bacteria that is in there...it could be allergies, but I have done the dust mite covers, etc. He may be allergic to the pets, but they are now kept downstairs and his biggest irritation is upstairs, at night - doesn't seem nearly as bad when he is downstairs playing with the dog! I have been trying to get to the bottom of it forever, because I believe that it has been a big obstacle in his recovery from PANDAS. What more can I do? I am going to try the Nasonex and hope that it adresses things. I am worried about causing an exacarbation, so I will watch him carefully and d/c if tics or other bx start. In addition, he has elevated Myco (old) that never went down from walking pneumonia last Oct. 2010. The abx are targeting this (among others), but could this "old" Myco be causing it? The congestion started in ernest right after his tonsillecomy last Aug. 2010, and never really left for more than a couple of weeks in the winter. Dr. B thinks that maybe he got a sinus infection at the surgery...

Thnk you. As I mentioned, he took a dip yesterday - was very tired and anticipatin his 5th (big) birthday party. He awakened asymptomatic and back to normal today, but this nasal congestion is awful! It's been going on off and on for years, really, but has been really bad over the past year. Allergy tests are mostly inconclusive so if I can get him to try the Nasonex, maybe it will help relive these symptoms. Familyof5, whne your kiddo had increased tics d/t the Nasonex, was it immediately, over a few days or over a long period of time? Thanks, Kath

My DS5 had a dip yesterday - he has been doing very well for weeks and it was the day of his big birthday party, but he definitely awakened with some cognitive fog and incresed OCD and tics. Hard to see, after such a long run of being almost asymptomatic, and I hope he will snap out of it by tomorrow. He has forever had a stuffy, irritated nose - I can only surmise that it is allergies, but it really affects him. Dr. B has prescribed Nasonex, but we haven't started it d/t him doing so well - just did not want to add anything else to the mix yet. I am wondering - since it is a mild steroid, has anyone experienced decreased PANDAS symptoms when using it? My son is very, very sensitive to meds (cannot even take Benedryl or Zyrtec) but I am wondering if Nasonex could work in his favor? Thanks, Kath

Eclairuse: so sorry about your son's acute onset! The good news is that you have caught it early. However, you must act NOW. There is a very small percentage of kids who fully recover without future exacerbations by being medicated with antibiotics alone. ALL of these lucky kids have started antibiotics very quickly after their 1st acute onset. The longer you wait to start antibiotics, the smaller your window of time becomes. I do not want to alarm you further, rather, make it clear how important it is to move quickly. Make appointments with a couple of PANDAS specialists immediately. These docs are flooded and are far and few between, so they often have a 2 month+ wait for the first contact. You can always cancel these appointments if they are not needed. Pediatricians have generally been of little help to us. However, if you can convince one to give your son Augmentin in a daily therapeutic dose, you will at least get him started. This is what I did prior to getting in with my son's PANDAS specialist so we gad the ball rolling by the time we landed in Philadelphia (I am in NC). There are other causes of PANDAS as well. My son had an exacerbation after walking pneumonia. This can be caused by Mycoplasma. This is an opportunistic bacteria that often "jumps in" during a sinus infection or what looks like a bad cold. Also, Lyme tick, Bartonella (cat scratch fever which can also be transmitted by tick bite) and Bebesia (tick). Below is the only referral that I have in Minnesota, but may be a good place to start. Perhaps she can refer to to others in the area: Constance McLeod 2915 S. Wayzata Boulevard Minneapolis, MN 55405 (612) 834-0424 In addition, here is the link to Dr. Kovocevic in Ill. He has a good write up and list solid criteria for PANDAS on the Site: http://webpediatrics.com/pandas.html We travel to Philly and to CT for assistance with our son. Most people need to travel for good help, but it is worth it! We are currently seeing Dr. Dennis Bouboulis in CT. He is brilliant and makes sure to dig deeper for underlying infections with the appropriate tests. We traveled initially to have a consult and he started a course of antibiotics immediately. The results have been excellent so far. Our contact since then has been by phone every 4 weeks, but he calls in prescription refills to our pharmacy here in NC. His Site is: http://advanced-allergy.com/ here are 2 other valuable Sites that can help you with further information: http://pandasnetwork.org/ http://www.pandasresourcenetwork.org/ Also, get the book Saving Sammy by Beth Maloney - it is an informative account of her son who also had sudden onset. She has become a champion for PANDAS families and it is she who helped us get hooked up with our PANDAS specialist very quickly after my son's acute onset. Please feel free to email me through the Latitudes Site. Warm wishes to you and your son. -Kath

Dr. B in CT DOES do phone consults, we have them every 4 weeks. It may be that he needs to meet the patient in person for an initial visit, as we had last july. However, all other contact has been by phone. He is an excellent doctor and has helped our son with a dramatic improvement and thorough testing that bore illuminating results.

Was just venting then thought better of it on this forum. You don't need to hear it

Eljo - Refresh my memory - were you trying to get an appt. with Elia at CHOP?

We see another well known specialist, who believes that short term abx can cause the immune system and antibodies to disassociate, causing the autoimmune process to become further set into place. 2 weeks is not enough time. IVig is a big step and there are risks. It takes approx. 1000 donors to create enough product for 1 IVig treatment. It is an excellent option, I think when all other viable levels of interventions have failed. I have had a teleconference with Dr. K as well and chose the abx route, which is working so effectively at this time that our specialist seems to feel that my son is on the road to a full recovery. This is no small feat as he has been very sick for approx. 2.5 years. Now he is not. He is well. This does not work for everyone, but there may be much more digging to do prior to you taking this step. I have some more specific concerns about Dr. K's protocol that I won't write here, but you are welcome to IM me if you would like to know of them. You are doing a GREAT job! It is very hard to weed thru all of the options, especially when you are dealing with stress and fear every minute of the day! Keep up the good work and know that we are in your corner! -Kath

We have not done IVig, but when my DS (4 at the time) utilized Amox in a 1 x D phrophylactic dose, it was completely worthless and Strep got right thru. What began his forward movement out of pretty significant PANDAS symptoms was a 2 x D therapeutic dose of Augmentin. However, Strep got thru that eventually also. He was switched to Cefdinir and improved greatly and his titers, which were very high for a long time, finally decreased to almost normal. What ultimately has done the trick for recovery has been a combo of Augmentin ES and Azith, daily.

This is an excellent, well written article. I have sadly noted that several pediatricians to whom I have spoken seem to need a better education in understanding the basic autoimmune mechanism. If I can get a couple in particular to put aside their arrogance and actually read this, they will perhaps catch up with this fast growing area of medicine! For those that wish to further their education and learn more in the treatment of their patients, it will be very helpful indeed!