qannie47

This should clear things up with titers.....http://www.latitudes...?showtopic=3756

My child is textbook Pandas, yet NO rising titers after 6 weeks of Strep....Unfortunately, I don't think there is a one perfect way to definitively diagnose or rule out Pandas. It is a collaborative, and clinical diagnosis.

Abx help, but not in three days...it takes a full round, if not more to rid of symptoms. My son was not symptomatic of strep, yet he developed Scarlet Fever...The strep that proceeded his first Pandas episode showed no symptoms of Strep either. He tested positive for strep for 6 weeks and it took 3 rounds of abx to rid him of strep. At one point, his doc was concerned that he was a carrier, but he finally tested negative. At that time, his aso titers were measured, (about a month after finally testing negavtive), and his titers were normal. Not all kids show a rise in titers and that itself speaks to an autoimmune issue...at least that is what I have understood. IF he has had neg results in the past, I have to assume that he is not a carrier.

Have you thought about a Lumbar Puncture....I read your history...Perhaps a bonafide autoimmune disorder?

Call Najjar...see what he says...

Hi. I am so sorry for your experience. Unfortunately, it is not uncommon. Don't give up!!! We see Dr. K, out of Hinsdale, (you can look up his full name in above threads at top of forum). I heard that he will do phone consults, and I know he treats long distance. I am just not sure what that means....I would call him. Everybody has a favorite doc on this forum, but I think the ones listed here all bring something important to the table and it will put you on the right track. Best of luck. If you have any other questions, PM me. I will talk to you on phone if you would like....

This looks very interesting. Thanks LLM!

Hi Ophelia, I think of you often...When you say "He", do you meant the partner? If not, I too have had the misfortune of being seen by a partner of a neurologist. The original doc was Pandas friendly, so I assumed he was as well....NOT. If I were you, I suppose I would check out to make sure that this guy is going to be on the same page as you and the original doc....I used to assume that partners think alike.....they don't. That being said, I wish you the best of luck!!! I hope your trip is fruitful!!!! Just said a prayer for you.

Thought I would give Lipoic Acid a whirl. My nutritionist loved the idea after the researched it for us. He said to take with a Biotin supplement. Lipoic Acid 100mg 3x day Biotin 1x day My ds weighs 55 pounds soaking wet. I will keep you all posted. (no pun intended)

Does anybody have an opinion as the why so many people experience diminished results on consecutive IVIGS?

How long ago was the IVIG? I heard that at the most recent Pandas conference, ALL doctors were touting the effectiveness of IVIG and were on the same page. I do think that there has been a lot of confusion about what one can expect from IVIG. We did it 5 months ago, and my ds did great, went to 150% pretty much immediately. What I did not realize at the time is that it is NOT an instant cure. Maybe for some, caught extremely early, (within 6 mo. of first major episode), but for most, All doctors agree that IVIG takes a year or two to truly do it's thing. While the magic is happening, expect to experience episodes that are supposed to gradually over time be less in intense and shorter in duration. ABX would still be needed to move child through episode as well. My ds, had an episode somewhere around the 13 or 14th week after IVIG. I freaked. I wondered what the point of IVIG was. It was not until I learned that I am going to have to expect this and came to terms that IVIG is more of a "Big Picture" cure, not an instant one. My ds, after a 3 weeks episode is back to normal and healing again. So I am grateful. One other thing that came out of the conference is that it is important to treat Pandas in some way, whether it be IVIG, or abx. I heard they said that as long as the child is treated in some way, ALL children can/will eventually recover. That being said, it could take years. I hope this helps. I vote for the IVIG.

Sounds suspiciously like Pandas to me.....With Pandas I follow Dr. K's etiology. He says that there can be minor flairs with Pandas before a big diagnostic one. It does seem that this recent one is definitely more noticeable and could fit the criteria for abrupt. The fact that he has Strep and the worsening supports Pandas. There really is not any blood work for Pandas except the Cunningham's Panel. I have not done that because my child, like yours, followed the typical etiology for Pandas with Strep association. For us, it was the fact that he responded to the abx so well with the remission of symptoms. MAKE SURE THAT YOU RETEST FOR THE STREP TO MAKE SURE THE INFECTION IS CLEARED. IT TOOK MY SON 3 ROUNDS OF ABX BEFORE HE GOT A NEGATIVE RAPID STREP. IF your doctor feels it is truly Pandas, I would go for an IVIG. Sounds dramatic, but latest studies are indicating that IVIG adiministerd within 6 months of QUALIFIYING episode have the best prognosis for full recovery. Without knowing all your history, it sounds like this episode is your qualifier....age onset is right as well.

I like the idea of Lipoic acid. I asked our chiro who is also a nutritionist and practices holistic approaches as well. He was versed on it and thinks it is very plausible idea. He also found a write up in an immunology journal that promotes it as a BBB healer. The whole mercury thing freaks me out, but wouldn't I know if he has mercury issues? I will have to Google that....thank God for Google.

I just love this forum...

Could she have dual ear infections? I recall having that experience with ear infections.

I would stay the course for a week at least. With my ds, when I made changes too quickly, it ended up adding more confusion to the situation. I learned that when I gave new approaches more time, I would see my ds bounce back and fourth between troubling behaviors and great days. I think that is the hardest part with this disorder....the waxing/waning.

Great news! Smiling.

We knew it was Pandas after abrupt overnight symptoms 12 days after strep diagnosis. I actually thought he had a brain tumor. After 2 more positive strep tests and no remission of all these odd neurological/mood symptoms, I sat down in front of the computer, typed in "behavior changes with strep". Landed on a Pandas website and there was my son on cyber paper. Of course I thought, what is the likelihood that this could be?... The very next day, our Ped's called and after looking into ds history, started talking about this strange disorder. My head swimming, I said, "Are you talking about Pandas?". "Yes", he replied. Life changing moment....

I know what you mean about what constitutes the "flipping back the pages". After our Ds had his IVIG, I was wondering the same thing. What I have understood is that you could see him exhibiting old behaviors that you have not seen in awhile. I did experience this with my Ds, but they were not totally linear. I was more like, "wow, have not seen that in awhile", and then it would go away. The amazing thing that I have experienced is that my ds's first symptoms were sudden bedwetting....and sure enough, in the past several weeks, his bedwetting has diminished about 90%. A far cry from 2 times a night. I don't understand this "flipping back the pages", but for some reason it seems to apply. I guess the first symptoms are the last to go is the working theory.

Thanks everybody. I hope that by sharing this with you all it can shed light for others.

Ifran: When my ds just could not seen to move out of recent episode, our PEDS doc thought it was prudent to do the mri, eeg, and spinal to rule out anything that we could have missed. Our PEDS doc was supportive of Pandas diagnosis, but he thought it was time. It was 2 well defined O bands that came up on his spinal fluid. This can be suggestive of MS, but because his blood serum did not show coinciding results of protein in blood, MS was ruled out. These O bands are specifically related to Autoimmune problems. So our doc felt that the evidence proved autoimmune base problem. It makes sense to me that it is this base problem that set my ds up for being vulnerable to Pandas.... JoyBop: That is what is amazing. NO, NO EVIDENCE OF AN AUTOIMMUNE ISSUE IN THE BLOOD WHAT SO EVER. IT TOOK THE LP TO CONFRIM IT. HE WAS CLEAN AS A WHITSTE ACCORDING TO HIS BLOOD LABS. HA

The lumbar puncture results are in....It is autoimmune.....which means.....our doctor is writing a letter to our insurance company supporting an autoimmune diagnosis.......and they have to reimburse us 9K or 70% of it anyway because the FDA approved treatment for this is.....what do you know....IVIG. All future IVIG will be covered. MY DS STILL DOING WELL. IN FACT GREAT. RECEIEVED AN EMAIL FROM TEACHER REPORTING HIS BEST DAY YET. 100% SHE IS AMAZED. PRINCIPAL AS WELL NOTES THE REMARKABLE DIFFERENCE IN HIM OVER THE PAST TWO WEEKS SINCE HE HAS MOVED OUT OF HIS RECENT, HORRBILE, THREE WEEK EPISODE. YEA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I was told that if there was an active infection, steroids will make it worse. They usually run blood work to qualify that though before administering them though.

Great post Dedee!

I recommend getting the cd from the library....he is a bit long winded, but his insights are amazing. I believe he speaks from his own personal experience as having issues as a child. The nice thing is that his concept is simple, but require mindfulness.