Pudgeo

Hi, Unfortunately you may have to pay...We see Dr Mielke in Pleasanton, She is a DAN Dr and is expensive but she knows her stuff. She was very instrumental in getting my Kaiser pedi to do IVIG for me. He called her and she convinced him that yes my son had PANDAS and that Kaiser needed to treat it. Also she did alot of testing which I gave to Kaiser...HMO's are pretty clueless about alot of this.. Dr Mielke's website..www.developmentalspectrums.com Good luck..Sarah

HI, We have taken him off dairy but he only tested sensitive to dairy/eggs/P.B. He eats mostly organic..nothing processed. He did test high for lead/arsenic which can wreck havoc on the immune system.. I have done chelation on & off since the summer. I will say he seemed to regain some of his conversational skills with that.I am doing IV chelation with him 4X next month. At home I follow the Cutler protocal and I have to wake him up at night to give him DMSA/ALA I did have a phone consult with Dr K a few months ago and my pedi spoke to him too..Dr K felt IVIG was my answer and I would see results soon... 2 Dr have told me an encelphalitis type disorder which is not a good thing (hard to treat) I am tempted to start azith again since when he was having good days it was when he was on that(yuck, more meds!) THe only thing that seems to help is ativan and I put him on a low dose of dexadrine to concentrate at school. As for supps..I did transfer factor to modulate immune system, and tried just about everything and I will say when I had him on alot of supps he was worse than now. SO now I am just doing a good multi-vitamin powder (kirkman spectrum complete) and that seems to be OK.he was fighting me alot on the supps so I had to minimize.I just started the epicor so we'll see about that.. I ordered HBOT which I am picking up on Friday to start hopefully 2x a day. THe Dr at the Amen Clinic felt this was really important so he convinced me to go for it.. I know every kid is different and what works for one will not another..Sometimes I think my son went so long mis-diagnosed that it is harder to get rid of this!! Sarah

Thanks for bringing this up...I am very frustrated that my son does not seem to improve. I do give him 1mg melatonin at night and now I am wondering if I should try and not give it and see if it helps? I know the Dr wanted to boost his dopamine...Sarah

Thanks..I am feeling frustrated because now my son does not want to go to school..which is a symptom we had in the beginning of all this! So now we've come full circle back! aaargh! I feel like we take 2 steps forward and then 1 or 2 back! No improvements seem to stick..I just don't get it..He'll have good days where we get glimpses that he's still in there and then some days he's a walking zombie. I feel like the anxiety just eats him up inside and he can't relax and be himself. THanks for letting me vent!!! Sarah

Hello and I am open to suggestions from the rest of you whose kids are dealing with PANDAS. I feel like I have tried everything..supplements/diet changes/ 3 IVIG/ anti-virals/antibiotics and now meds suggested by the Amen clinic and my son is a zombie this week. He has been waking up alot at night which I believe is from the neurontin. I started him on the amantidine which is supposed to raise dopamine levels and like I said my son is a spacey/zombie this week. So I've just had it with everything!! I ordered something called Epicor from VRP? Has anyone ever tried this? It's supposed to modulate the immune system. He was much worse on supplements like co-q-10, anything which is supposed to help the brain seemed like it made him worse!! Thanks, Sarah

DIet changes may have helped if there are foods he eats that he has some sensitivities to...remember the immune system is really confused right now... I've heard that some people see results from the antibiotics with in a week...or a few days? everyone is different.. Traditional Dr don't really know how to test for PANDAS....I'm very impressed your Dr knows so much! Don't loose him! When I told my sons pedi last year that I thought I was PANDAS I was totally brushed off and now he's doing IVIG for me....Sarah

I also live in East Bay...Concord. We have seen Dr Mielke for my son, she is a DAN Dr in Pleasanton but understands these issues alot better than traditional Dr's. If you need anymore info message me...Sarah

I don't know if you saw any of my old post..but my PANDAS 10 yr old reacted horribly to SSRI's and me like a dummy kept letting the DR prescribe them!! I just had 3-D brain scan done and DR gave me suggestions for meds..he said we do not need to raise seratonin but rather work on the dopamine & gaba...SO I am seeing HMO Dr tommorrow to get prescriptions... I really think each kid is soooo different that you never know until you try!! Sarah

Dr at Amen clinic wants us to do trials of dextradine, neurontin, geodon, and amantidine...geodon is my last choice!

Hi EAMOM .. I think the answers to 1 & 2 are my son went way to long misdiagnosed. Kaiser thought he was having seizures and we messed around for 8 months on sez meds...He then became much worse last summer. I think he's had it for too long. A theory I have is that IVIG may work if caught early? not sure.. HBOT is hyperbaric oxygen therapy... It helps repair brain cells and inflammation... 4 I'm not sure if any of those are an anti-inflammatory...they would help cool down the over active parts of my sons brain..so he can think again.. After I saw the scans it made me realize why my son can't think & remember...his brain is on fire and needs to be cooled down.. Sarah

Dr Gupta is at Univ of Irvine, CA 949-824-8600 appt His assistant name is Jacqueline 949-824-5818....Probably best to call her first and get info about what tests you need done.He will OK IVIG and does the first one there and then you set up to do at home. My pedi called Gupta and got the info needed to do IVIG for me.I am not sure about insurance covering it...Kaiser did ours ...ratlenhum would know answers about insurance coverage....Sarah

Hello, We went to the Amen Clinic for our results...my son's scans were consistent with a PANDAS diagnosis and the Dr said when they compared them to their database they were the same as 6 other children who had encephalitiis....this is good info for me to take back to Kaiser... THe meds we are going to try are...amantidine, geodon, neurontin,dextrostant...he wants us to do trials of each one and see if it helps.He said the amantidine should help the most,,it is a med for PArkinsons. I am very happy to have some direction here...ALso he felt HBOT was necessary, so I will start that.He felt the HBOT was more important than the IVIG. He felt since we had done 3 and not seen any improvement that we should try the HBOT. I am very please with clinic and happy to have more information to help treat my son. Thanks for everyones helpful comments...Sarah

Ratlenhum and I are old IVIG friends..meeting on another forum to discuss PANDAS & IVIG. She helped me alot...she saw Dr Gupta first for IVIG and I went shortly after. Dr Gupta does IVIG about every month for PANDAS & immune dysfunction where Dr K has a different protocal. I have another friend in my area who is doing the 2 day IVIG for her sons PANDAS. They just did the 2nd round. Unfortunately he gets very sick the day they come home for a day and then seems to be fine . He gets flu/fever symptoms.I've heard this is a normal reaction to 2 day IVIG. I don't think there is really a "for-sure" protocal to get rid of PANDAS. I am meeting Dr at Amen CLinic today to go over my sons brain scans...his comment during the phone consult before we started was that IVIG wouldn't help...so I am going to ask him to elaborate on that...He has worked with several children who have suffered regression after viral/bacterial illness and has a son on the spectrum so I think he gets it... Sarah

Since my 10 yr old got PANDAS his concentration is terrible. He is not hyper at all but very spacey and can't seem to remember things(like school work!)I have resigned myself to the fact that we will have to do meds since I've been trying for 8 months to get rid of the PANDAS and no luck..(IVIG, supplements, azithromycin and lots of other stuff) What meds are used for this?? He still has some anxiety & OCD but I would say the concentration issue is the biggest(and lack of retention of school) ..Thanks for any input..Sarah

Hi Michelle, I'm not sure what to say...I sub teach & sub aide alot at my sons school so I have found out alot about kids..more than I care to know. I have also learned which are good teachers and which are not so good because I am at the school so much. I have also learned which parents the teachers avoid.Obviously this person must have some sort of credential and has been hired to sub for your district. I know at my son's school they try to not have parents teach/sub in their own kids class...but I have sub taught a few times in my sons class.It's actually very hard for me to sub in my sons class...I notice everything he does!! In our district they are very short subs especially if it is a long term assignment(1-2 weeks) Maybe they didn't have anyone else to pick from?? I don't know if any of this helped??? Sarah

I have learned NOT to listen to the folks working in the health food/vitamin stores. I have gone in to buy supplements and was told they were'n't safe for my son..(when I knew they were) I do my own research and only use them to help my find what I need. What a goof head...

Dear PMoreno, Just wondering where you live?? I live outside SF, Ca. Anyway..my story is quite the same but my son has slowly gotten worse since this all started. He had a 3 day fever(he was 9) and when the fever left he was a zombie! Kaiser(my HMO) thought it was seizures and he actually improved somewhat on some of those meds(depakote, lamicital) but then last summer he got really bad again and we took him off everything and that's when I found out it was PANDAS. I had to go to a private DR. (DAN! DR) because they understand immune dysfunction and over-active immune system issues MUCH better than traditional Dr's. My private Dr was very instrumental in getting Kaiser to do 3 IVIG for me and I hope to get one more at the end of this month!! I was hoping for a miracle with the IVIG but it hasn't happened. So I am now resigning myself that I will have to put my son on meds...His concentration is terrible and he can't remember anything from school. He has not made any progress in a year..He still does not have his happy & vibrant personality..he is full of anxiety & OCD. He has had vocal tics at times but they wax & wane. The only med that has helped us is ativan... I just had 3-D brain scan done at AMEN clinic in Fairfield CA and am meeting them on Tues to find out results & med recommendations... If there's any thing I can help you with let me know.There are lots of folks going through all this..I have posted that it is definitely different for every kid ..what they need to get well from this! If you do see private Dr get a PANDAS panel run..through Neurosciences..a DAN! Dr could do it. Also alot of traditioanl Dr base everything on ASO titers & anti-dnase(or what ever it is) because they don't look at the symptoms..just the numbers on the paper...no one ever tested my son for strep in the beginning of this and then when they did it was 6 months later!!So he numbers were just slightly elevated and my Kaiser Dr said...he doesn't have PANDAS....and then I did the private PANDAS test and guess what!!! he did!!!!high antibodies!!! HELLO!! Sarah

Hello & welcome to my world... I am Pudgeo9999 or Sarah and my son had a fever in Jan 07 and has never been the same since...I don't have much time to write but I will reply more later... Leslee@bandbservices.com is Leslee from the forum and if you want to email her she is very nice.. My email is PUDGEO@aol.com I'll write later...Sarah

I hope I didn't mislead you by my comment on anti-depressants.. I guess what I've learned on this journey is no 2 kids are the same and everyone has to try different things.. I wish so much my son would have responded to bio-med & IVIG but after 6 months NO improvement.. I will keep up the basic supplements(omega-3, good multi-vitamin, zinc, a few others..) but I am hoping 3-D brain scan next week will really tune us into what kind of med we need....my son did horribly on anti-depressants..made him crazier! good luck...Sarah

http://www.thegreenguide.net/doc/ask/thermolon I was curious about these pans as I am now cooking for my son on stainless steel only... There are really mixed reviews if you google it.. Sarah

I agree with EAMOM..could there be any viral/bacterial connection? My used to be soo happy and had alot of friends and then after PANDAS...what a change..doesn't want to play with anyone and he's grumpy and moody. Does he get any supplements? add 5-HTP/inositol/ NAC/co-Q-10/omega-3's ...or any type of brain boosting type supp? Unfortunately I am now resorting to meds for my son...I've been waiting too long.. Your son may need small dose of anti-depressant or mood stabilizer? My son get great on depakote but he an allergic reaction to it and we had to stop..Sarah

THANKS!! Awesome info for us PANDAS folks!! Sarah

Dear needhelp, I am not an expert at tics, but I'm sure you will be getting some good advice here soon! Could there a trigger for the tics? certain foods?? Also could she have been exposed to some viral or bacterial illness to trigger this? (PANDAS from strep?) Just some thoughts???Sarah

Hi, I want to thank everyone for their continued help & support..I finally decided to do the brain scan and we have it next week. I feel after numerous supplements/ azithromycin/IVIG my son is just not getting better....I feel he will have to be on meds to function. I had a good consult with a Dr there who totally understood PANDAS and brain inflammation/encephalitis. He said they had seen this before..huge regression in kids after a virus/bacterial infection. He has a son on the spectrum so he understood immune system dysfunction..and now my son is being pushed on the spectrum too because of this. Also when I discussed meds with him he told me ativan & abilify were not a good combination and they did opposite things. SO I can already see their speciality is to look at the brain and then figure out what meds you need..instead of guessing like all the other Dr do....I've already played that game..try a med for a month and see if it works. Also my son was worse on anti-depressants and he said that was a big clue too... If you go to the Amen Clinics website they have a section on ring of fire which is OCD in the brain and it describes why anti-depressants usually don't work.... If anyone has any experience with all this let me know! Sarah

I second that...My son has been on azithromycin for 2 weeks and no change...but he's had PANDAS for 1 1/2 yrs...aaargh Sarah