beeskneesmommy

I have the pickiest eater ever, and we have not had a big problem. Sure, he is irritable about it at times, but there are so many mainstream foods that are fine for him. For instance, popcorn, corn tortilla chips, potato chips, Fritos, which we occasionally have although I like to stay away from GMOs. Some BBQ sauces are GF, like Sweet Baby Rays. GF breads are generally yucky in my opinion, but Udi's is great and you can get large loaves at Costco for a reasonable price. We eat pretty normally but exclude gluten completely. However, we are not dairy free and apparently do not need to be. I would suggest cutting out the gluten first, then the dairy/casein of there is no change in going GF. We had very fast, evident results, but most people need to be on GF for at least 1 month prior to seeing improvement. Patience! PS: I have gone GF along with my son (since 8/13) and it has helped some of my joint pain and skin issues (I was getting these weird, itchy rashes). My husband appears to be unable/unwilling to follow thru w/GF. I got rid of all of the stuff in the cupboard, like wheat crackers, flour, etc. However, he still buys some items that have gluten and just keeps them to himself. If he wants dinner at night, he has to eat what I make! PPS: Costco, Walmart and Trader Joe's are good resources for GF at reasonable prices. Lucky for us GF has recently become kind of a "fad", so those of us that really need it have more choices at this time!

I don't attend this forum too often these days. haven't checked and did not realize my notifications were off. I believe the box is cleared now

We went GF last August and it was a major game changer. Since then we have discovered that DS7 has very significant allergies...to a lot! It is perfectly reasonable that he is gluten intolerant, especially when we were able to see such a measurable change. I truly wish I had not waffled with one foot in and one foot out of the GF world for so long prior to taking the plunge. All or nothing is the only way and we will never go back!

Yes, we have been at this for 5 years. I just discovered how incredibly allergic to allergens DS is, although I was aware before but the tests came back in conclusive and contradictory a couple of years ago. A few people on the other forums also had positive things to say about the allergy shots. Dr. B is awesome and stated that he would start with a very low dose. We are trying to circumvent the fallout that usually c omes with allergy season. DS is doing very well and we don't want to re-agitate those antibodies!!

Just had a talk w/one of my son's specialists. DS7 is loaded w/allergies. He was high pos. on many grasses, trees and molds. Doc wants to do a series of allergy shots, starting with a very low allergen content that he will make up and mail to me. He seemed sure that DS will not have any reaction and that it will help to quell the PANS symptoms that come like clockwork during allergy season here in the south. It makes perfect sense to attempt to keep the antibodies from getting agitated with pollen/molds and risking a setback. However, I get really freaked out over introducing anything like this because I fear it will bring back PANS symptoms that we have worked so hard to eradicate. Doc assures me this will not happen. Has anyone else done this? If so, please let me know how your kiddo did, if the shots caused PANS symptomology initially or throughout, if you think it helped, etc. Thx!

We have been dealing with PANDAS for 5 years. There were some horrifyingly, gut wrenching times during which I feared that I would lose my son to this illness...and perhaps lose myself along with him. In July 2011, we sought the help of Dr. B. This was the start of our journey home. We see other specialists as well. I believe that a team approach is best as each doc brings something different to the table. Dr. B's understanding of immunology and his choice of antibiotic treatment has been right on. DS had IVig Sept. 2012 with Dr. B's recommendation, although with another specialist. My only regret is that we did not do it a year earlier. DS had 1 more IVig last May, 2013. IVig, antibiotics, and gluten free diet have brought our son fully back to us. He is 7 now, happy, healthy, socially involved, playing sports and recently had a stellar report card at school. He still has mild bumps..very occasional flares that others don't notice. These are infrequent and very manageable. He is, aside from being a little hyper and silly at times, well, normal now. I will remain hypervigilant, perhaps until I die! But i am here to tell you that our kids can get better. I credit Dr. B for his role in helping to bring our beautiful boy to us. In fact, I have my monthly teleconference with Dr. B this Friday Keep having hope. Keep the faith. Warm healing wishes to your son and your family. Kath

We used Clindo for 30 days for DS 6 last summer. At the same time he was on Azith and in addition, had Rifampin for the first 14 days. I have to say, after the Rifampin dropped off and he was only on the Clindo/Azith, all broke loose. At the 29th day I dumped the Clindo and added back Augmentin and he started looking better WITHIN HOURS. There were extenuating circumstances in that he had just had IVig about 4-5 weeks prior and was still ramped up with symptoms stemming from that. Ours was a very diff. circumstance but I have very negative feelings about Clindo as a result.

Pls check your messages. Just sent you some info.

I have spoken with Dr. Breitshwerdt, who was a primary part in the development of Galaxy. he is actually a vet, but is very involved in research for Bart in humans as well. This is, from what I understand, a very reputable lab for Bart testing.

I do not have any advice regarding treatment, but I wanted to let you know that Dr. Josephine Elia at Dupont Nemours Children's in DE is one of the pioneers of PEX for PANS. Given that she is in a hospital setting, you may have luck with insurance. Perhaps you could ask Dr. L to communicate with her on your behalf. It is worth a shot. Good luck!

You can do a blood test for candida. We do it regularly, along with chem screen to make sure that our 7 yr old is tolerating ongoing abx.

Yes. They are overloaded with lots of other mothers just like us. I have learned to be very persistent and I am able to get what I want as a result. Talk to Silky and explain your situation. I called the office last week and there were appointments available throughout the next 2 weeks, barring a couple of days d/t the conference. You may have to pay for a teleconference of make an appt. and go there. They are all trying to do their best for us - they have patients flying in from other countries as well. There are very few of them to go around, sadly. Good luck!

You know, I started to write a long and complicated history and decided that because there are so many unanswered questions, I would rather advise you to get to a neurologist (PANDAS friendly) ASAP. Was your son functioning typically prior to getting sick in 2010? Was this a "sudden onset"? My son was much, much younger at onset and diagnosis. Onset was about 15-18 months as I see it in retrospect and 1st Strep test and diagnosis was at 2yrs., 9 months. he was not treated with daily abx until age 4 when a T&A while Strep infected kicked off severe symptoms. His 1st IVig was right at age 6 and then another 8 months later. We see Dr. L and Dr. B on the east coast, but I would recommend Dr. L 1st due to the severity of your son's neuro symptoms. Has he been tested for Lyme and other tick borne infections? Has he been diagnosed with Sydenham's Chorea? Warm wishes, Kath

Hi - seems like I was JUST reading an article about this but it escapes me now. Bumps on the back of a child's upper arms means ----- ?? Some sort of difficulty absorbing a vite or mineral? NOT Keratosis Pilaris, but some deficiency? Any ideas? Thx!

It depends upon the individual and how he/she handles consistent abx. My son has been on abx daily for 3+ years, and the combo of 2 (Augmentin 2 x D and Azithromycin 1 x D) for 2 yrs. 5 m. with no major side effects. He did have some candida growth at one point which we got under control with Diflucan. He takes a daily probiotic. The most important thing is to do a CBC and chem screen every 3 months in order to check for liver/kidney concners. So far so good. It is my absolute conviction that if he had not been put on a long term abx regime, he would not have recovered so effectively. That being said, it took IVig and GF diet in addition to the abx to get him here.

I feel that having both a neuro and imunologist on board has contributed greatly to my son's recovery. They each bring diff. ideas and understanding to the table. That being said, if I had to choose just one, it would be the imunologist that we see. That also being said, not all are alike - Dr. B has been exceptional in his testing, digging deeper into triggers and abx treatment, whereas other imunos have not. I think it depends upon the doc. It is important not to become complacent with any specialist - stay on top of them, bring ideas and research to them, and add in another if there is no siginificant improvement over a reasonable course of treatement. Warm wishes and good luck! -Kath

OCD looks different in kids sometimes. Angry outbusts, aggitation, fear and meltdowns are not simply behavioral problems, but the child's response to what is upsetting. My son's OCD began before the tics, but I did not recognize it because he was so young. Anxiety presenting in the forem of unfounded fear of wolves sounds pretty OCD, which doesn't always come in the form of actions, rather, getting "stuck" on certain ideas/thoughts. I would certainly persue your concern of PANDAS/PANS, especially since it sounds like the onset was pretty sudden and coincided w/Strep.

It does sound like Bartonella.

Absolutely warms my heart

Thx. I will check it out. I am leary about these meds - my son has been treated with abx and IVig, with excellent results.

I would never give it to my son, or any other psychiatric med. This is an anti-seizure med utilized as a mood stabilizer for bipolar d/o. Another label is Depakote. I am familiar with this med from my work in psychiatric hospital. The side effects are significant. I am really amazed and frankly, disturbed by this info. Can you please provide a link to the article?

I have been seing posts on various forums stating that Tylenol is not safe to use for PANDAS kiddos. Can someone who really knows the answer speak to this for me? I gave it to my son when he was ill as an infant and throughout childgood and alternated it with Ibuprofen during and after both of his IVigs. He was not feeling well on Sat. and I found myself making a conscious choice to give him Ibuprofen instead of Tylenol...simply because I have recently read that Tylenol is "bad" for our kids. I figured it mught be nice to know why I did that!

I used to use Ibuprofen at thte start of seeing a flare, and back in the bad old days, when the regular daily living of constant flare seemed to get worse. I gave my son the typical dose for his weight 3 x D (every 6 hours) to start for a couple of day, then tapered it to 2 x D for about 3 more days. I was careful not to keep it up in too concentrated a time as he was on abx daily and Ibuprefen is tough on the stomach and liver. 8/10 times I saw a difference for the better. The idea is that since it acts as an antiinflammatory, it assists with the inflammation in the body/brain theoretically caused by the PANDAS flare. Please note that i am not a physician and I am not giving you medical advice. Rather, just telling you what worked for us.

Agreed as my family is riddled with Strep/Rheumatic Fever on my mother and father's sides. However, it is important to note that some kids with PANDAS appear to have little or no family history....

I live near Duke and have not had good experiences with it regarding PANDAS. I am curious to know who the treating physician is? Please email me if you choose not to disclose on the forum. jleyba6465@msn.com I am very happy for you and your family!