coco

We have used steroids on my dd twice. First time in July as a diagnostic tool for Pandas, and she experienced almost immediate relief, not symptomless by any means, but a marked difference. We are now doing monthly ivig and in early December she was going through a symptoms flare and Dr. B prescribed steroids for several weeks with taper and she responded very positively almost immediately. So far, the benefits appear to be holding and we have since done an additional ivig. Dr. B said occasional bursts would help her through the rough patches and works well with ivig treatments. When I took the bottle out of the fridge (she takes prednisolone) I always joked to my husband..."Here comes the liquid gold!"

Good point -- altho I know the difference I always say PEX as an abbreviation for Plasma Exchange, as I think most on the forum do.

I don't know about the ultimate authority being with the manufacturer...if you read through the entire GSK website it also says that "safety and effectiveness in patients younger than 16 years of age have not yet been established, and yet many kids much younger are using it. So, I think we have to evaluate all info from all sources and each make our own decision in the best interest of our children.

Hi Alex, we were there with my dd on Wednesday...were you there that day? I know 3 others pandas kids from the forum were there getting ivig that day, too. Sorry I missed meeting you in person if that was the same day. Glad to hear your son had no side effects.

As I was waiting for my augmentin refill this evening, I asked the pharmacist about different abx' and specifically about AugmentinXR. I know there was a recent post where folks discussed "splitting" those pills because they were horse pills and they had a hash mark on them to make it easier to take. The pharmacist told me NOT to spilt it because it does then change how and when the medication is absorbed. Just thought I'd post the info for those who were having there children take it and not wanting to "break the magic shell."

UPDATE ON WACKY WEEK: Well, I feel better about this week right now because I just came from the pharmacy...long story short all week long I had been giving her expired augmentin (exp 12/31) unwittingly. She takes the liquid and receives a series of small bottles which I store in another fridge. There was one in there that I had not checked the date on so that certainly would account for the up in behaviors. BTW the pharmacist told me that it looses half it's potency after 10 days and rapidly breaks down. SO, I was essentially giving her no abx this week that were of any value until tonite. Additionally, she rec'd her 5th IVIG with Dr. B on Wednesday p.m. and today she is the best we have ever seen her -- EVER! I don't want to jinx it, but this time there is NO DOUBT there are SIGNIFICANT changes. I hope this boosts the spirits of all us "chronics" everywhere!!!!

Alex, please update us on your appointment with Dr. B, if you have a chance

Peglem - I am so excited for you!!! All my fingers are crossed!!!

Michael - I gave a big "sigh" when I read the words, "chronic pandas sufferer." I totally belive they are tougher nuts to crack, my dd being one of them. She's had it for seven years undiagnosed until this spring and we have since done ivig with dr k, monthly ivig with dr b, high abx and 2 steroid bursts. I have to sit back and say, "She is a lot better. But she is not healed." There are still strong patterns of inappropriate behavior that are deeply ingrained in the brain and very hard to navigate out of. It's frustrating and there are days I feel as though there MUST be something else I can do or should be doing that I haven't figured out yet because this is a heck of a long ride. Some days I am like superwoman and we are cracking the code, and other days I feel my legs wobble and woe and I say this muck will never end. When I see something bizarro she has not done in 5 months I say, "why" is this back for a few days?? Or for instance, her teacher called me just a few minutes ago and told me that my dd came into her classroom on Monday after Christmas break and laid down on the floor. WHAT??!! She NEVER did anything like that before! And in music class while all the others were singing and doing the hand motions, she sat there and did nothing. Then when all were done with the song, she starts to sing at the top of her lungs! But her handwriting and verbal skills are so much improved and her focus is much sharper. What do I do with that??

Worried Dad - when you did your rounds of ivig with Dr. K, were they over the two-day period? Did he do it at the 1.50 or 1.75 or 2.00 rate? Thanks. coco

Hi Faith - her teeth were stained as a result of the abx. "Stained" meaning not coming off with regular brushing, and there was a lot of it seemingly quickly. This was definitely very obvious to see as abnormal for my daughter. I am sure your dentist will know what to do if it's abx staining. Good luck!

Hugs to you wornoutmom -- I feel for you. It makes me so angry that these dopey docs are always willing to whip out the script pad for any kind of psych drug out there for these kids but when I comes to prescribing longterm antibiotics -- eeks, shudder! I agree that you need to see Dr. T or Dr. L or Dr. K or Dr. Bouboublis ASAP and follow their protocol. You don't need to convince a skeptical doctor right now, find one who is on board from the get go.

Lloll - we have been treating my dd for Pandas since July 2009. High abx, 2-day IVIG with Dr. K. in Chicago in August, and monthly ivigs with her local immuno here in Ct. She has also had 2 steroid scripts.

Oh, but I think they are truly autistic...my daughter fits all the criteria for severe autism. Its just that those criteria only identify symptoms of something! I say my daughter is autistic, its just that the autism was caused by PANDAS, which interfered with her development. Since she had it at a very young age, it interfered with her very early development. Children who get this at an older age, have completed early childhood development, so do not present as severely, and are more easily identified because its clear that they were normally developing and then something changed drastically.But, I think you're right, many of your clients probably have PANDAS as the cause of their autism. I think that "true autism" is something genetics gives you, the kind that a physician sees maybe once in his career, prior to the 1980s. This "new" autism, ASD spectrum, pdd, blah, blah, may, in fact be all immunologically-related and may well be as common as strep gone awry...I don't mean to oversimplificate it by any means, but some of these kids, even the ones who have had developmental issues from an early age as undiagnosed Pandas can still be helped greatly, or even saved with aggressive treatment. My dd is making good progress and she's had it for 7 years and she just turned 10. I think it is great that special ed teachers and providers are beginning to talk about this and begin to question and not simply accept the "autism diagnosis" especially in the very young. Especially not now. I often think of that TV commercial that says, "The odds of a child being in a Broadway play, 1 in 10,000...the odd's of a child being diagnosed with autism, 1 in 166".... they may someday should substitute "Pandas" for "Autism."

The dentist had the hygenist apply that "paint on" protective coating/fluoride. We were so happy that there was no permanent staining, and still no cavities, but it took quite a bit of scratching with that pick-like instrument after many abrasive passes with that spin brush to remove. It's much better to keep up with with it over time rather than letting it build up. The dentist said that it may well be the clavulanate potassium in the augmentin moreso than the azithro. I'm just glad her pearly whites are back again!!!

For those of our kids who have been on long-term abx you may want to check your child's teeth (or maybe we are just the only lucky family) for teeth staining, and browning or yellowing along the gum line and especially behind the teeth. My dd has been on abx for 5 months now and she has always been a really good tooth brusher, no cavities at age 10, and just a few weeks ago when I made my once-in-a while tooth inspection I noticed this staining that looked like the brown sediment you'd find at the bottom of an apple cider container!!! And it was not coming off!!! One of her baby teeth fell out last week and it looked like a pirate tooth. The dentist was able to remove almost all of it after 45 minutes and will finish up in a couple of weeks, but he said that all those abx alters the bacteria in the body and the saliva's composition has changed and staining occurs. It's not just from the "cycline abx" that this can occur. It's rare, but she now has to have her teeth professionally cleaned once a quarter as long as she's on the abx. Just thought you might want to check you children's teeth up close, just in case. coco

I have been giving my dd liquid lactobacillus made my Lifeway, 1 billion per 2 tablespoons. It's kind of clumpy, a bit like buttermilk consistency, but it comes flavored raspberry or bananna, which she loves. The owner and "ghandi" of all things natural at the health food store told me that the liquid is more effective than the pill form, so I went with it. My dd loves the taste, so it's easy. She takes it following her daily dose of kefir, which she also really likes. For those who are new to probiotics and Kefir, I just pasted the article below to give some insight on Kefir. ************************************************************************** Kefir is a fermented milk drink. The word kefir is said to have originated from the Turkish word "Keif" which means "good feeling". Kefir dates back many centuries to the shepherds of the Caucasus Mountains who carried milk stored in leather pouches where it would ferment into fizzy sour yoghurt. Elie Metchnikoff, a Nobel-prize winning biologist at the Pasteur Institute, first suggested that lactobacilli might counteract the putrefactive effects of gastrointestinal metabolism in 1908. He attributed the long and healthy life of the people of the Caucasus Mountains to their consumption of soured milk. In modern times there's a great deal of interest and research into probiotics and the health giving properties of fermented milks like kefir. The Kefir Culture There are two types of kefir: water kefir - small transparent grains that ferment sweetened water; and milk kefir - white or cream coloured grains that look rather like cauliflower florets that ferment milk. Kefir is a living culture, a complex symbiosis of more than 30 microflora that form grains or cauliflower-like structures (sometimes called plants) in the milk. As the culture ferments the milk these structures grow, creating new grains in the process. Real kefir from live culture is an endlessly self-propagating process. Microorganisms present in the grains include lactic acid bacteria, Lactococcus lactis subsp. lactis, Streptococcus thermophilus, Lb delbrueckii subsp. bulgaricus, Lb helveticus, Lb casei subsp. pseudoplantarum and Lb brevis, a variety of yeasts, such as Kluyveromyces, Torulopsis, and Saccharomyces, acetic acid bacteria among others. They give kefir excellent keeping qualities by keeping putrifying bacteria that might otherwise colonise the milk at bay. They've been shown to inhibit both salmonella and E. Coli in laboratory tests. Kefir and Health Kefir has many reputed health benefits. It has antibiotic and antifungal properties. It's been used in the treatment of a variety of conditions, including metabolic disorders, atherosclerosis, and allergies, tuberculosis, cancer, poor digestion, candidiasis, osteoporosis, hypertension, HIV and heart disease. You might find it odd that that a drink containing yeasts would be good for treating candidiasis but it has been helpful to many people, both by restoring a better balance to the gut flora and because some elements of the microflora will kill off Candida Albicans. Not all yeasts are harmful. In addition to beneficial bacteria and yeast, kefir contains many vitamins, minerals, amino acids and enzymes. Particularly calcium, phosphorus, magnesium, B2 and B12, vitamin K, vitamin A and vitamin D. Tryptophan, one of the essential amino acids abundant in kefir, is well known for its relaxing effect on the nervous system. Because kefir also has an abundance of calcium and magnesium, also important minerals for a healthy nervous system, kefir in the diet can have a particularly calming effect on the nerves. The abundance of enzymes brings more health benefits, especially to lactose intolerant people, many of whom can tolerate kefir without difficulty, as long as the kefir is raw and not cooked (cooking destroys the enzymes).

Peglem, I will be praying for you and your daughter for smooth and easy travels and MUCH success with Dr. L!!! Can't wait to hear your update upson your return!!!!

Just as an update, I found an old tube of Desitin in the cabinet and rubbed some on her bottom...almost all gone within 24 hours...just a few raised red dots now. I did not know Desitin worked on yeast or strep....maybe it was prickly heat? Well, I have a pic of it to show and tell next time we see the immunologist. The sniffling is gone, too...I will watch it and see if this pattern continues. BTW, I now have a huge cold myself and I wonder if hers was so mild it looked like a sinus infection, which may mean that the IVIG lessened the severity of the cold. (?)

How old is she? She just turned 10 last week. I checked her bottom out this morning, still red and rashy...she was itching it...I put some triple paste on it for now to see if it helps. I took a few good pictures of it.

Or is it Strep A rash on her bottom??!! How do I tell the difference? This is maddening.

Ok, my dd just went to the bathroom...Iwanted to check out her stools (which I do from time to time, just to be sure no abnormal) and I got a really good look at her bottom and I SEE A RED RASH ALL OVER IT!!! Is this a yeast rash?? I have never seen this before, but then again it's been a long time since I have glared at her bottom. Is this the culprit of the sinus problem?? Ironically, I just bumped up the probiotics this afternoon on all your input of "maybe yeast." What do you all think?

But I wonder WHY after 5 months of high abx and 4 ivigs she is still having this. Her nose is not red from wiping, it's more at the tip of her nose and they are clusters of sores that are not crusty, but red...almost going to get crusty if it ever got worse. It's amazing to me that after all these abx the infection could STILL be so stubborn that it's not eradicated...and, does that mean the brain is having an equally hard time of healing?

My dd weighs 60 lbs.

Dr. B is doing almost as much gamma as Dr. K., she is currently on 1200 augmentin and she is doing a 30-day prednisolone dose and is doing much better, behaviorally. The prednisolone really gave things a shot in the arm and she is responding very well...maybe this will help her over the rough patches, but this sinus -- or almost cold -- and sores makes me really wonder what's going on inside.