beeskneesmommy

MomtoJake: You know, the 1st thing that struck my mnind was the question as the whether your kiddo has ASD or whether he has had PANDAS for a long time. My son started with PANDAS at a very young age - was diganosed at age 2.5, but I suspect the onset was as early as 18 months. he dod NOT show any ASD behavior or symptoms early on, in fact, he was talking fluently by age 2. However, when PANDAS began to strike hard around 2.5, it was very evident that there was something wrong, particularly when he was Strep+ and with recession of symptoms when he was given abx for Strep. He just turned 5 and has been on the right abx to tackle the problem (never and other meds than abx) and he is completely restored at this time to being a normal, healthy little kid. I may be way off the mark, so please do not get your hopes up d/t this response. however, it may be worth seeing a specialist that will dig deep for answers, as not all do! We see Dr. Bouboulis in CT. Please feel free to IM me. Warm thoughts your way --Kath

I have hesitated to write of our victory in the most recent battle, although we are far from winning the war. I write to you all in my excitement and happiness for my son, but also to share information, hope and faith to those of you who are in the trenches. We have been in those trenches for a very long time and I have felt depression and lack of emotional stability many times that has taken me to the brink of a very dark place. I know about the worst fear and pain that a mother can bear. I know that you all do as well. I currently know the day to day fear of losing my child again, whom I am, in a way, just getting to know as he has grown a year older in a fog of PANDAS. As we all know, we can wake up at any given morning and our children have slipped away agin during the night. I wish for victory for all parents and children dealing with this most horrible illness.

eljo - kids little bodies and brains are extremely resiliant. They can often repair damage. Please don't go there - keep working toward recovery!

Thank you! I feel really interested and excited to see this in "main stream" script, rather than medical only (although that's exciting also). It's so cool that PANDAS is being recognized in expanded arenas now. 20 years from now everyone will know, and we will not be looked upon as so unusual...or even doubted as to the viability of what we declare as debilitating illness in our children. In adition, perhaps I can even imagine that PANDAS will be an antiquated thing of the past in 2031! -Kath

It is nothing magical, but strong stuff for a little guy. He is on Augmentin ES AM, Azith mid-day and Augmentin ES PM. This is after a year of first, regular Augmentin BID and then a switch to Cefdinir BID. He had "old" Myco from walking pneumonia lasy Oct. that just wouldn't go down in numbers and, in the past, whenever we out a regular 5 day run of Azith on board, he would get much better for a couple of weeks. We went to Dr. B in CT in July who had us test thru IgeneX and Lyme and Bartonella were +. NOW, that being said, we were floored by the result and never thought that our son had any co-infections because his Strep:PANDAS has been very obvious throughout the 2nd half of his life. It has always been very clear that Strep has been the culprit for the PANDAS and he has no other MH DX or DX on the Autism Spectrum. Just an otherwise healthy kid. I am still not totally convinced of the Lyme, as I have spoken to a leading researcher for Bartonella who shared that he believes that people who are + for Bartonella also show a false + sometimes for Lyme. I belive that the main thing that has been holding him back was the Myco and possibly the "old" Bartonella infection (we have a cat that scratched him constantly when he was littler and this cat was adopted as an adult Tom from the shelter. In addition, we cought the PANDAS at age 2.5 and although we did not get the help that we desired, each time he demonstrated PANDAS symptoms, I took him to the Pediatrician and had him tested for Strep, at which time he inevitably was + and put on a 10 day run of abx. So he was protected to some degree throughout it all. He also had a T & A last August (which resulted in the major acute PANDAS episode that sent us to CHOP), but in the big picture, I think that losing those resevoirs for Strep has been helpful. This is way more than you asked for, but I felt that in giving you the abx treatment protocol, it was important to clarify what we might be treating. There is not magic bullet, but this happens to be darn close for my little boy...at least at this time. I will celebrate further when we get off the meds or taper down to a low dose prophylaxis and he remains symptom free. Peace and kindness and warmth from us to all of you.

Thank you! I hope this 'sticks' also!

We are very blessed at this time. We started the new abx protocol 7/27. After some initial and pretty bad herxing - 3 days and a day here and there - DS just turned 5 is doing very well. We have both had irritated throats and stuffy/irritated noses over the past several weeks which may be virus or allergies. However, when in the past this would send DS into a tail spin, he has had only a couple of evenings of hyperactivity and some counting, finger movements when really tired. Nothing reported at preschool except perfectly typical age appropriate behavior. We have not lived like this for a couple of years - a block of time this long in which we are relaxed and feel like a normal family. I am so thankful! I pray and hope with every cell in my body that this is the end and that we are finally on the way to recovery. I wish this for all of you as well. -Kath

My son (just turned 5) is really science oriented so we have framed it as scientific and encourage him to watch so it's understood and "known". We also always call ahead and let them know he is fearful so they arrange for a nurse who is great with kids or are at least prepared to be soft and gentle. We let our son know ahead of time that we will go straight to the store afterward to get his "prize" (he gets a car or plane from the kiosk at Rite Aid and that is the only time I buy it for him so it's really special, plus they cost 5 bucks). Whenever he asks for one at another time I remind him that they are just for blood draw rewards. Boy oh boy, it all sounds so darn sad when I write it all out. Our poor kids!

And, Baylor, I hate to sound abrupt, but wake up and make an appointment already! You can cancel it if you decide it is unnecessary and it won't cost you a thing! Please don't waste any more time as each week that you wait is another week that you lose in seeing a specialist. We had a horrible, acute episode, lierally overnight last Sept. and had nothing in place for the situation. It was pure fate that we were able to find help immediately, and that is unheard of now, a year later. Best wishes.

Yes, doubting an denial IS a part of it all, at least for us. It's such a crazy disorder in that it DOES come and go, or, "wax and wane". This is actually one of the typical crieria for diagnosis. You may want to check out Dr. K's Site and go thru the criteria. Or, PANDAS Network.

My son had extremely high ASO & Anti-Dnase (450+/900+ consistently), for a year after abx, in conjunction with 8 months post T & A. The doc said that she thought that Strep was getting thru Augmentin and we switched to Cefdinir. It may have been luck in lack of exposure or the cefdinir being more effective, but he had high titers still in 3/11 and by late June they had finally gone down. Coincidentally, we just found + Bart & Lyme a few weeks ago. The Strep titers continue to be close to normal range. Hang in there!

I am very sorry to hear about that. Is PANDAS 'suspected' or do you have a diagnosis? You really have to get assertive (but respectful - don't want to irritate the powers that be) thru this process. I know that with all of the press over the past year, Dr. Elia has had a flood of patients. It took me less than 2 months to get in with Dr. B. Have you made appts with him or Dr. T so that you at least have them?

Back to the waiting for an appointment w/Elia - In Sept. of 2010, my son had an acute episode after a T&A while infected w/Strep. I frantically called Latimer and a couple others. NO ONE would fit us in before 2 months, even when I told them that my otherwise completely normal son was staring right thru me, having severe vocal/body tics and choreiform movements, and appeared to be unable to process info for 3 days straight. When I called CHOP, I had no previous connection with Dr. Elia. The receptioist turned me away with the typoical 2 month thing. I made a point of telling her that my son had a PANDAS dx, and that he was in very bad shape, and that I needed help NOW. She left me on hold, spoke with Dr. Elia's coordinator, came back on the line and said Dr. Elia prefers to see PANDAS kids right away. We have an opening Tues. Can you come? This was on a Friday and I packed our bags and we drove like bats out of ######. You have to push, to make yourself understood. Receptionists are not medical people and they don't really care! Explain your situation and ask them to talk with her coordinator. Don't give up! You are close by and 1 visit can confirm dx and get your kiddo started on ongoing meds which are absolutely necessary to start with!!! I truly believe that Dr. Elia saved my son! I truly believe that if we had waited 2 months without treatment, we would have lost him to the horrible PANDAS abyss and may never have had the opportunities for recovery that we have now.

I would be careful about going to CHOP ER. You may be seen by an ER doc on rotation that may not have any expertise re: PANDAS. This is not a route thru the back door to see Dr. Elia or any other PANDAS specialist at CHOP (of which, I suspect, there are none because I think Dr. E is the go to lady).

Did you call scheduling at CHOP during business hours? 215-590-7555. You will get a recording. Do NOT press any buttons on your phone and you will eventually get a receptionist at the Behavioral Health Center where Dr. Elia works. Tell the receptioist that your child has a dx of PANDAS and that you need to be seen as soon as possible. Last Sept., I had an appt. within 3 business days, although I know it has gotten busier over there. The problem is, there are too many kids needing help and too little specialists that are able to help them. That leaves the dilemma of how far each doc can stretch until they are at their limit. I advise you to make an appointment with Dr. E and Dr. T, then go to the 1st appt. available. If you are satisfied, cancel with the other doc. If you are not satisfied, go to the other doc. However, It would be really prudent to make an appointmenmt now, as the wait can be long to get in. One thing is for sure. If you do not make any appointments, you will not see any doctors.

Hi - After my son's acute episode, his symptoms roller coasted up an down day to day for quite a while. Also, part of my son's symptoms included intermittent hyperactivity. Low iron can also cause this, according to Pediatricians that don't even know about PANDAS. Just more to think about... Yay that you are getting somewhere with this! Positive thoughts to you and yours! Kath

We go to CHOP and it was a great start to get immediate help and info for our son when he had his acute episode l year ago. Dr. Elia is an amazing, compassionate person who helped us a lot, and we continue to see her and to share info. She is not wrapped up in ego, as some of the specialists are, and she is interested in hearing about other docs ideas and new information re: PANDAS. We see Dr. B as well, who has had the ability to give us more aggressive labwork and abx treatment. We intend to share our new info with Dr. Elia and we expect that she will be interested and open to it. I would also encourage parents to seek help at CHOP. Keep in mind that the best way that we have found for our son's treatment has been to gather a team of docs and several different info sources, as treatment for PANDAS is still in the pioneering stages.

Benedryl and all OTC allergy meds actually exacerbate my DS5's PANDAS symptoms a lot. They tend to cross the blood brain barriuer very easily...What is the Xylitol and Coconut oil for? Ibeprofen seemed to help with my son when he would flare up and I have seen it mentioned positively by many other parents as well. It's tough on the stomache and can be on the liver as well. Maybe you can get a CBC and check your kiddo's general health while you are waiting...

I will send you the referrals directly.

I am so very, very happy to hear of this news. Thank you for sharing because you bring hope to us all! Keep fighting the good fight, Nancy. What a wonderful mother you are. I send lots of positive thoughts your family's way!

I have referrals in Toronto and Newmarket, Ontario, as well as Washington, USA. If I recall from when I lived in Seattle, Van Couver is about 2.5 hours away?

Was this a sudden onset? Was he "fine" (for lack of a better word) prior to this? Has there been Strep infection, Lyme, Bartonella or Pneumonia (Mycoplasm) involved in any of this? Here is Dr. K's Site in Chicago. I am not necessarily recommending him over any other as a PANDAS doc, but his Site has some pretty solid criteria for symptomology. http://webpediatrics.com/pandas.html

I have had a consult with Dr.K (last Feb.) and this seemed to be his belief at that time as well. His treatment is based upon his stats and his stats are based upon his patients only. I respect Dr. K but I also keep in mind that there are many excellent PANDAS specialists and a few different thought processes. One experience that I have had that has been extremely insightful, has been most recently with Dr. B. He tested DS5 for underlying co-infections and I wass floored to find that he had Bartonella and possibly Lyme. The antibiotic treatment directed toward these co-infections seems to be doing something miraculous. I do not think that you should lose hope, especially if your kiddo is doing very well. Rather, keep digging deeper and be prepared for the future, just in case. I am an older mom of a little boy turning 5 on Monday. I have learned that I must live in the moment each and every day - enjoy him as much as I can in the present and work like a dog when I can to prevent him from getting lost again. I hope you have a wonderful, care free Labor Day weekend with your beautiful, precious daughter!! -Kath

My son started with high fevers around 18 months, when he really didn't have a lot of language to express pain or discomfort in specific areas. By age 2.5, he was finally tested for Strep d/t sudden onset of eye tics following one of these typical fevers. There then ensued a huge series of medium to low grade fevers, + Strep (rapid and cutures), antibiotic treatment, eradication of PANDAS symptoms, then all over again after a couple weeks. This lasted for about 1.5 years. He generally did NOT present with severe sore throat, impressive redness or enlargement of the tonsils. Due to the huge history of Strep infections, our ped felt that it was medically justified to have a T & A done and we hoped that it would eradicate the PANDAS for good. Unfortunately, he was not given a sterilizing course of abx prior to the surgery (although I informed the ENT x 2 that he had an active Strep infection and requested the abx). Shortly after his surgery he had a massive acute episode that sent us charging to Philadelphia for immediate help with a PANDAS specialist as there was noone in the Raleigh area that could help us. I feel that in the long run, as he is recovering quite well now, it was a good choice to make. HOWEVER, I would never allow it to happen without major abx precautions and being prepared ahead of time because he was so terribly ill with PANDAS symptoms afterward we literally lost him for 3 days. He was glassy eyed and when he did speak, made very little sense. The ENT did tell us that his tonsils had many crevices in them in which the Strep was hiding and that he likely had Strep all of the way thru for a couple of years, and the abx just "hid" the symptoms for a couple of weeks in between Strep flare-ups.

Thank you - i understand that part of it. I just don't know what the Gangliaside IS. I think it may be a measurement of the quality or reactivity of the immune system itself?