beeskneesmommy

the charge is by the lb. or kg. My son was 43.75 lb.'s and the cost of the product itself was 3800.00. This was a prett fair price. The doc fees for overseeing the treatment over a period of 2 days was 900.00.

According to my son's docs, ALL probiotics should be given 2 hours away from abx for max results.

I am for giving 30 day runs of Diflucan every once ina while. My son looks great on it which leads me to belive that we have encouraged some yeast with all of the years of abx. It is rather benign, milder that Nyastatin, from what I have been told.

Sterpods are known to cause increased tics in some kids. Not sure why you were not told of this by your doctor. This is quite well known. It is not good to stop the steroids at this point without consulting your doctor but I would call as soon as possible. I have heard of tics getting worse then gradually getting better on steroids as well. Good luck - my thoughts are with you - I know how hard this is!

My son has only 1 mutation. His Dr. says that it does not impact him but makes him a carrier. I assume that I have the mutation as well, although I have not been tested. I am told that the double is the impactful mutation, as research suggests an increase in liklihood of 1 or several medical concerns (see attached link). There is no proven cause and effect betw. the mutation and PANDAS, just a correlation in so far as lots of PANDAS kiddos also have the mutation. There is just not enough data yet. My understanding with the double mutation is that increasing folate will be helpful to regulate homocysteine. However, I have read several people warning that the use of methylfolate must be cautious and that the right dosage and product is key, under a specialist's supervision. Perhaps in 10-15 years there will be more information as data comes in, depending upon the medical community's priorities regarding research into this concern...not sure if it helps as my son has only the 1 mutation, but he is a pretty classic PANDAS kiddo who has morphed into PITAND over time (reacts to infection other than Strep as well). He has come very far with daily abx over a long period of time and had another dramatic change for the better after IVig in Sept. At this point unless he is in a short, exposure induced flare, he is like every other normal, healthy 6 year old - even further advanced academically. http://en.wikipedia.org/wiki/Methylenetetrahydrofolate_reductase

Dr. Josephine Elia is a leading specialist in utilizing PEX for PANDAS. Unfortunately, she is in transition from PA to DE in her practice. the credentialing process is very involved. She will begin practicing at Nemours, Dupont Children's Hosp. sometime during the former part of this year. At this time they are saying March. You might want to call them on a regular basis, every couple of weeks. The BX Health line is 302-651-4500. We also see Dr. Latimer and although we had IVig with her, I am aware that in some cases she does Plasmapheresis. I hope this helps. Best to you and your family.

Sounds like a flare and OCD. It is a pretty bad germ season. When I am sick, even if my son does not catch it, he will often have a short flare in response. His antibodies react to me. All that talk at school can be upsetting to sensitive kids and sometimes teachers lose sight of the appropriate way to present these issues...

I contacted the company and asked some questions i felt were pertinent. Sounds like an interesting product. Here is the Q&A: ME: Is the primary ingredient (immunoglobulins) collected from humans or bovine? REP: Greetings and Good Day! Thank you for your inquiry. The serum in which the immunoglobulins are derived from come from bovine. Your interest in Xymogen products is much appreciated. Should you require any further assistance, please do not hesitate to contact us. Have a great day! J Best regards, Kyra ME:I do have another question, thank you. How well filtered is the product for infection, particularly prions? REP: Our product specialist stated this: “It is extremely well filtered. In fact it is tested for contamination with prions. Equipment removes all somatic cells so it is safer than a bite of meat or sip of milk. In the flip side products that are colostrum based have such high levels of somatic cells that if they were sold as a dairy product like milk they would be banned from EU and US for having too many.” I hope this helps! Best regards, Kyra

DS6 is alaso a pt. of Dr. B's. He has been on Azith and Augmenting daily since 7/11. He recently had a 35 day run of Diflucan. He did very well. Some herxing but overall improvement during the Diflucan run.

Hi - I used to live in Denver (before my son started the PANDAS journey). However, I was in contact w/a mom in that area who told me that our former pediatrition's office (Arapahoe Pediatrics, in Littleton) had a doc who was PANDAS friendly. Try giving them a call to start

I noticed in the grocery store yesterday an organic cocoanut peanut butter! For those of you whose kids are not peanut allergic, this might be an option. the calorie count was lower than reg. PB...it was 5 bucks, so i did not buy it, but maybe I will. What, exactly are the benefits for PANDAS kids??

Could it be a response to abx? I tend to mirror my son's elevated Strep titers and have to go on 30 day runs of Augmentin. Makes me feel pretty rank...and yes, Walking Pneumonia is associated w/Myco - this is how my son got it.

The IV abx are so good! We had none. I asked for oral abx prior to the surgery but was refused. We had 10 days of cefdinir post op but it didn't make a dent. You are on the thr right track, I think, but I would speak w/Dr. T. I, personally, would put my son on heavy therapeutic abx for at least 6 weeks prior to the surgery, were I given the chance to do it again. The fallout for us was tremendous and long lasting. However, as I stated, we had no abx prior to or IV abx during the surgery. Good luck - I think we were an especially bad situation, which, although it has taken over 2 years, is now well under control.

Dr. Denis Bouboulis in Darien and Stamford, CT. He will get you what you need. I suggest a multidisciplinary approach which has worked beautifully for us. We see Bouboulis, Latimer, Elia, O'Connor in CT, MD, DE and NC respectively. Traveling is par for the course and at least Dr. B is not too far out of NYC. Worth the trip. Website below. Warm wishes, Kath http://www.advanced-allergy.com/

Yes, you are. My son (now 6 but 4 at the time) had his acute episode post T&A d/t Strep infection prior to the surgery. Dr. Trifiletti recommends a pretty heavy abx protocol prior to and post T&A. If we had done this, perhaps it would not have taken the better part of a year to recover...and it was not a full recovery even at the year mark. I do not want to scare you, but taking further abx precautions would be my advice. Particularly if your kiddo has had so many infections - this would indicate that he/she has a chronic Strep, as my son did, living in the surgical site. Warm wishes, -Kath

You need a prescription from a Dr. in the USA for IVig. It is an intravenous product that must be administered under medical supervision as there is risk of serious side effects. Most people bring their kids to "in-house" with their specialist, or have a pharmacy come to their home (i.e.: Med Pro in Raleigh, NC). Gamunex is the only product that is approved for neurological disorders, as far as I know. After much research, I feel that it is the best product, with the least amount of risk for other human infection and it is one of the only products that effectively filters or decreases the risk of "prions". These are tiny critters that cause extremely serious disease such as, but not limited to "Mad Cow disease". That being said, the transfer of prions during IVig is very, very rare. I strongly suggest that you have a telephone consult with a specialist in the USA. Dr. Kovacevic and Dr. Trifiletti both do phone consults. Below are their websites. Hope that helps, Kath http://webpediatrics.com/index.html http://www.site.neurokidsr.us/

My son flares when he gets really sick ( bad virus or flu-like symptoms). We just ride it out, however, he is on abx daily anyway to protect him from Strep. Eventually, he comes back, moreso and much faster now that we have had IVig x 1.

No, each kiddo is different. Steroids in the beginning, higher doses, can decrease quality of sleep and cause hyperactivity. We all know that lack of sleep can make symptioms worse at times! The one symptom that can increase with steroids are tics. Some kids have a decrease in these and some increase. My son decreased, but they came back down the road. The most significant positive change that I saw in my son was about 5 days AFTER the run of steroids was finished. Ultimately, it's a waiting game and you should not abruptly discontinue them once you have started. There are some kids who respond to steroid bursts with psychosis, but this is relatively rare. I would call your doc, however, to check in.

DS6 has taken the flavored liquid and he inspects everything prior to putting it in his mouth! He says it tastes "gross" but I bribe him with a yummy cookie or a pice of chocolate or some other sweet treat. It's easier for him knowing that it gets less and less every few days an we make a big deal about the "steps" down to less each time we get there. I also bribe him with TV or anything that I can that he likes a lot - sometimes you have to bend your scruples to get the job done!

I do not think there is a correlation with regard to the age of parents. I do, however think that in many cases there is a family history of genetic predisposition to Strep related autoimmune issues (ie: Rheumatic Fever, Scarlet Fever and/or Strep).

YES! We went thru ###### for agaes - he was dx at 2.5, but fell apart really badly after a a T&A just before his 4th birthday. He has been on daily abx, the best of which is a combo of Augmentin and Azith, for over 2 years. He turned 6 in Sept. Although he was doing very well, he still had some symnptoms and flares were pretty bad when he was exposed to Strep and other illnesses. We did a round of IVig in Sept. and he is much better. He still has mild flares, but the overall improvement is huge. His vocal tics have practically disappeared, except when he is really tired. He is in kindergarten and reading on a 4th grade level. his teacher says he is way ahead in all academics. he has a great peer group and when I drop him off at school I hear several boys say "Brooks is here"! as they run over to greet him. He is happy, well adjusted and on his way. We continue the abx and will start tapering off in the spring. We may do another round of IVig as he still has evident flares when he is exposed to infection or gets sick himself. However, if IVig was not available, we could live with the current situation. Warm wishes for 2013! -Kath

Beeskneesmommy, Can you share what dose augmentin & azith respectively? Are they administered together at both morning and evening? We are currently on augmentin xr1000 2x/day and it worked great for a while. I feel I need to add something more lately and like to hear what combos work Well, of course it varies per weight/age. My son turned 6 in Sept. and weighs about 45lbs. he has stayed the same weight for a long time, give or take 2-3 lbs. He is on Augmentin, 600/5 sup., 2 x D and Azith 200/5 susp., 1 x D. I give him the Augmentin morning and bed time and the Azith right after school around 3:15. This is the "IT" combo for us - he has been on Augmentin and Cefdinir seperately, in the past.

How far upstate do you live? There is Dr. Bouboulis in Darien and Stamford, CT, just outside of the city. Probably worth the drive. We work w/him from NC. After the initial meeting, you can do consults over the phone. Our docs (Latimer, Bouboulis and Elia) are all at the very least 5 hours away. Unfortunately, sometimes one has to travel for good care...

Azith works well, but the combo of Azith and Augmentin wotks best for us. It is rare that and abx of any kind will stop the PANDAS response completely, never to return. My son reacts to illness around him - he does not need to be infected, just exposed to have a reaction and many times for his titres to elevate. He has been on Azith and Augmentin daily since 7/2011. He has had a saw toothed recovery, but his recovery overall has been excellent. The PANDAS is not 'gone', but the episodes are much fewer and further between. He finally had IVig in Sept. to push him further and some of the symptoms have disappeared completely. However, exposure to Strep or Myco or (I suspect if her were exposed to Pertussis) will trigger a reaction still, albeit much shorter in duration. I would be alarmed to stop abx altogether, as it takes away protection to possible infectio, but that is your call. I understand about the fear of long term abx also. Are you in the States? If not, can you get a consult with a PANDAS doc? Seeing a specialists is imperative, in my opinion, to beating this disorder. We see Dr. Latimer, Dr. Bouboulis and Dr. Elia. Take care and warm wishes, Kath

Cindy - I am so glad that you are getting some help. Don't be alarmed, however, if you see a dip as the Flu mist is live and is known to cause a PANDAS response in some kiddos. I am a little surprised that she did not just do a shot, which is the dead variety. Glad she started Augmenting - how about testing?