Pudgeo

Hello, I wish I had the miracle cure for PANDAS!! My son has had 3 IVIG and no improvement...we may be able to get HMO Kaiser to do one more IVIG. He had a fever in JAN 07 and has never beent he same...after a year of mis-diagnosis I finally realized it was PANDAS. He definitely waxed & waned and his symptoms the last 6 months have been worse than ever.He is a completely different kid than before the fever. It's heartbreaking to us. He is full of anxiety/OCD and spacey. Right now I am very lucky because I started to see a DAN Dr who is willing to try whatever it takes to get my kid back! SO we are trying a month trial of azithromycin and just started spirolactone today. ALso I started him on abilify because the OCD will drive his teacher crazy at school. I'll let you know if I see any improvement... Today he actually sat an played a little bit(something he forgot how to do since the FEVER) I also did alot of anti-inflammatory supplements but now he is fighting me on taking them so I had to pare down to just what is necessary...omega-3 is a big one. If you read alot of the old posts here on PANDAS alot of Moms had luck with azithromycin..THe biggest thing I have learned is there is no one treatment that works for everyone with this... be in touch...Sarah

To: FAmom. we saw Dr Lewis at Stanford. He is a Pedi Immunologist. He was very helpful. I am very lucky my Pedi at Kaiser has been willing to try things. My son has had 3 IVIG thru Kaiser and my pedi just told me Kaiser will not do anymore IVIG for "neuro-immune" issues. My DAN actually prescribed the azithromax for me..My Kaiser pedi said he can only try one thing at a time.My DAN said we may need a course of steroids too. I am trying everything to beat this! Thanks for the encouraging words on the azithromax..I only have 2 weeks worth but DAN said she would give me more. I knew when I took it I would need at least a month!From what I have read I feel my son may need to be on azithromax for a long time(6 months?) I also am worried about being exposed to germs at school to trigger this again! I am so happy your daughter is better! Thanks ! Sarah

To worried Dad..I know how hard it is to see your kid misrable. I definitely would try another med...not all work for everyone. My son has alot of OCD thoughts and that's what I am hoping the abilify stops. he can't concentrate at all...I am dreading him going to school..he's a mess..good luck, Sarah

hi...the improvement I saw in my son is now gone..he is very spacey & lots of OCD..I started a trial of azithromycin & abilify to see if it would help. I saw Stanford Dr and he felt my son had an encephalitis type process going on..brain inflammation. I am going to pursue a lumbar punch. Has anyone had any experience with this? I researched encphalitis and it didn't sound good..it sounds like some kids never recover..very depressing.. DOes anyone know if it's OK to give 5-htp with abilify? thanks...Sarah

After screwing around with Kaiser for a year(and my son was no better) Private Dr ran LOTS of tests on him..he was low in amino acids, minerals, had immune system dysfunction(over active) Was also low in vitamins...Also showed high levels of arsenic/lead/mercury/aluminum....you think Kaiser ever checked any of that? nope.... So we are finally seeing a small improvement in my son....he is on supplements of everything he was low in and we are chelating him...Good Luck! SaraH A DAN! Dr is probably best to help..unless your Dr has bio-medical training...

Any type of bath is soothing...My son started taking 2 or 3 day after PANDAS struck us. Epsom salts are detoxing him....Have youhad him checked for metal toxicity? Sarah

I second what Peglam said..she's right.. http://home.earthlink.net/~moriam/ This has the counting rules for hair tests and other info... I hope it helps..Sarah

WE are seeing a small improvement in my 10 yr old son this week. He seems to have a little bit of his personality back. We still have alot of OCD and other stuff...I am hoping this continues(school is in 3 weeks!!) I really started to load him up on supps a few weeks ago..I figured why not, it can't hurt him and as I added I didn't see any negative so this is what I gave him.. super nu-thera powder from Kirkman (like a multi-vitamin) NAC 5-HTP Omega-3 oil & Evening Primrose Inositol GABA co-Q-10 Vitamin C & A trace minerals biotin(I foundout kids who are on Seizure meds need this) calcium/magnesium at night melatonin for sleep LDN creme at night lithium orotate(he was low in this) zinc SO I don't know if this can help anyone..I know it sounds like alot but I have all powders and I put it in pudding.. A good book is by Dr Bock..Healing the New Childhood Epidemics He has alot of info on supplements & PANDAS.. I really think it's a combo of EVERYTHING that is finally getting his system back inline..I hope! SArah

Thanks for the comments..hopefully we can all learn from each other! My sons MRI did not show any inflammation..but I've read where MRI are not sensitive enough to always show inflammation. This is where the 3-D scan comes in.... This Dr did believe in PANDAS and had treated it before. But he wanted to see higher strep numbers than what my son had..but he definitely felt there was an immune triggered response that was causing my sons symptoms.I feel my son was exposed to strep or that the testing was done too late after he was sick..(6 months)He ordered a bunch of labs so I will interested in the results! Thanks for the link to OCD article As for the marker..my sons did show elevation of the on his PANDAS panel. It is a rhuematic fever marker. In fact this Dr mentioned I should see a rhuematologist...(did I spell that right?) So I still think my son needs to be on azithromycin right now..with school starting I am really worried about possible reinfection.. Thanks, Sarah

Where does this Mom live?? Dr Gupta is at Univ of Irvine near Los Angeles...Sarah

I met with Pedi Immunologist at Stanford. He was very caring and spent alot of time explaining things to me. He did not feel my son had true PANDAS because he never had a super elevated ASO & antidnase. He did feel that my son did have some sort of neuro immune disorder that was causing all his symptoms(spacey, anxiety, OCD) My sons MRI did not show brain inflammation but he felt we needed to do a spinal tap to see for sure. My husband freaked out about a spinal tap and I felt..hey anything to give us more INFO!! He said the spinal tap would reveal what kind of antibodies where in there... Also he said he would not start an anti-biotic now.. He also felt IgM's were very unrelaiable because they can change so quickly..He felt we were best to do up to 6 courses of IVIG and he told me to be patient and he bets there will be symptom improvement soon..He also ordered more labs to be done. We are only on IVIG number 3 next week and I can't imagine waiting 3 more months..I am really considering putting my son on prozac/abilify or something to stop the OCD. He can't go to school like this..he'll spend all day arranging his pencil box! So that's the low down..Thanks to all of you who have been so helpful..I'll have a party when this is all over! Sarah

I feel your frustration..I refuse to now believe one Dr..My son was mis-diagnosed with Seizures for a year by a neuro until I did private testing and found out it was PANDAS!!! My neuro realized she had made a mistake...So Now I listen to what they have to say and I still believe"Mommy Gut" is true! I take it all in and I decide what I feel is best after much research. Neuros just want to give out MEDS too...lots of them! Hang in there!! Sarah PS My neuro told me special diets & supplements were worthless....(but she advocates the ketogenic diet)

Hi, I am a PANDAS Mom..but I felt the supplements you started with were good! I will warn you that your pedi neuro may be a "traditional Dr" and want to prescribe a med for the tics. If I were you I would read up on the meds(if that's what you want to do) so when you are in the appt you are ready(so they don't throw one at you, read about the side effects!!) ALot of the meds zombie the kids out! ..My pedi neuro is very anti-biomedical (even though she advocates the ketogenic diet for seizures Hmmmm) and told me all the supps & diet changes I was doing was meaningless. You never know..your pedi might be a little more open minded? Could your son have been exposed to strep??? Have you run any ASO titers or anti-Dnase test?? Good Luck! Sarah

Yes..A woman I met via PANDAS forums son had high markers for rheumatic fever..he was misdiagnosed with fifths ?? So it went untreated....now her son has full blown pandas...Sarah

Glenda, Titers do not have to be elevated to indicate PANDAS..We have never done a steriod burst..My pedi did put my son on 5 days of prednisone and it didn't seem to help. WE are on a ton of supplements and nothing is helping..omega-3 is supposed to help. We are on an anti-viral to try that angle..so far nothing has worked. sarah

I'm glad you posted about this..It seems there is no definite protocal for PANDAS symptoms. I think after much research that anti-biotics are a must and especially to prevent re-infection! My pedi is hestitant to give me azithromycin (I asked for it) because we are doing IVIG...If and when my son gets better the last thing I want to do is go through all this again!!! I am hoping he will consider anti-biotic in Aug or my DAN said she would prescribe for me...I feel like no one really knows what they are doing!!! Sarah

Sorry to hear things are not better at your house... I always knew there was a correlation with my sons symptoms and his sudden onset of panic/anxiety...The Dr's didn't believe me until they ran the PANDAS/OCD panel and it showed high antibodies. Has your DAN recommended this test? What I am now realizing is it's not easy to get rid of this...My son is on LDN cream too which I had to stop & restart at a lower dose because it was giving him headaches. It's supposed to help modulate the immune system. We are trying acycolvair an anti-viral right now. ALot of Dr feel that viruses can linger in the body and help contribute to mess up the immune system, I find interesting that the azithromycin didn't help..it seems to have a good record for helping and after my 30 day trial of antiviral I want to try it... I don't know if your Dr would look into IVIG? We have had 2 and no improvement..but I was told it would take 3-4 to help my son...all this waiting is driving me crazy! I seriously might have to put my son on an anti-psychotic med in the meantime..his OCD is horrible. I guess everyones kid is different and we all have to find the right answer...Sarah P.S I'm sure I have spent at least $5000. of my own money on Dr visits DAN! ,testing & supplements and nothing is helping!

Yes I trully believe infections can harbor in other areas of the body..My friend's son has PANDAS too...she was doing some protocal to clear up his gut and wow huge exposion of OCD..seems she had stirred up a lingering strep infection..she always wondered why her son hadn't goten sick and had never gotten strep when his sister had it numerous times.She did a PANDAS profile on him and his anti-bodies were very high too. ALso you do not have to have high ASO titers for it to be PANDAS! my sons were elevated slightly but never really high..Sarah

I am finding that some folks have alot of luck with azith and some don't...Dr K the PANDAS Dr in Chicago said he uses augmentin for PANDAs...but my DAN! said she would much rather use azithitromycin than augmentin?? I'm just getting very worried because my son will loose his placement at school if I send him back like this. He was never a behavior issue, was always happy & cooperative before. Now he's a mess...Sarah

My son had a fever in JAN 07 and has never been the same..after being misdiagnosed with seizures by Kaiser for a year, we were trully a mystery to all the Dr's..meanwhile my son kept getting worse...anxiety/panic...things he never had before, he was a walking zombie(still is) finally I went to a ND naturo-path who did a ton of tests on my son...PANDAS panel for antibodies came back off the charts abnormal..finally I have an answer....but that was 6 months ago and we are still not better!! Kaiser has done 2 IVIG for me..they are supposed to do at least 2 more...we are on a ton of supplements..nothing is helping! We are going to try IV chelation starting this week for every week to see if that helps! (metals will seriously mess up the immune system) I'm just at my end with this...seriously...SOme Dr believe in anti-biotics..my Kaiser Dr doesn't want to try that while we are doing IVIG..too many things at once he thinks. I've researched where azithromycin is an immune modulator and I may try that thru my DAN! if all else fails....SHe supports trying it..I am trying an anti-viral first to see if that helps? Meanwhile my son keeps regressing academically and walks around like a zombie and now has full blown OCD. I am also very close to trying anti-psychotic type med for OCD soon....anything for some relief!I will say his vocal & hand tics have lessened.. I posted about possibly getting a 3-D brain scan...Sarah

Well we are in month 19 of PANDAS and there seems to be no relief..DAN! Dr suggested 3-D scan to see inflammation etc..I had considered this along time ago when we didn't know what was wrong..Has anyone ever done this? It's about $3200.00 If it does show alot then it could be helpful in treatment?? not sure what to do?? My son is full of OCD & spacey and we've had 2 IVIGS with no improvement at all! THANKS..Sarah

I agree that meds should be used for PANDAS if all else fails... We had our 2nd IVIG today and I believe Kaiser will do 2 more for us..but I really feel is my son is still an OCD mess come sept/OCt I will look at seroquel or abilify or I will loose my mind! We do give my son .5 ativan in the morning. It seems to be the only thing that has ever helped him. We are just keeping it where it is for now and hopefully wean him off soon...Sarah

Hello, I understand how you feel//I sware if my son is not better or showing improvement soon I will get back out the seroquel! I'm serious..I am so tired of the OCD & spaciness!! My son is on .5 ativan in the morning which I was going to try to wean him but the Dr said NO since he is getting IVIG and they don't want to complicate matters more, I think the ativan really helps calm him down...I just don't know..we have been doing bio-med since FEB for PANDAS and there is NO improvement..I think my sons symptoms are worse!! I guess maybe consider the clonidine as short term??? See how much you can stand!!Sarah

A DAN! Dr is a Defeat Autism Now Dr and basically they know alot about immune dysfunction and treating PANDAS. My son was never considered autistic until after getting PANDAS..now he has autistic symptoms from PANDAS..spacey/OCD . If you can find a DR who knows about PANDAS go for it!!! Also check out webpediatrics.com it is a DR from Chicago who specializes in PANDAS..he believes in using augmentin for 3 months and then weekly... Sarah

It is a test by a company called NeuroImmunogy Labs .it checks anti-bodies to Strep..There are 12 tests on it..that check the IgM's and IgG's to B-call antigen, ganglioside, Myelin basic protein, Strep, tubulin..My sons numbers were really high, he scored in the abnormal range in 8 out of the 12 tests. My neuro said the test was meaningless. that there was no data to support it..My DAN! saw it and said that's PANDAS!!!!The test was about $350 and we ran it twice to be sure the results were consistent and they were..Sarah