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There is a book, maybe called the anti-inflammatory diet? A family member with AS & another with Crohn's have this book and were going to try it but honestly-- it was too intensive to consider and frankly, went against most of the conventional "healthy diet" thinking. I am not saying that it is not valid in decreasing inflammation-- just too darn difficult to wrap my head around!

Thanks- I am thinking that is the direction I need to go. I do not know if our particular PANDAS doctor will do any of this- it has never been done for my other kids-- though, again it was not necessary. I do also "have" an LLMD- my oldest PANDAS daughter actually was treated for lyme & babesia first- before the auto-immune tx of PANDAS was undertaken. We are getting labs for food allergies drawn tomorrow actually- skin testing was done and was positive on a few things. So we are trying to get the whole picture. She is an allergy-asthma kid I could ask my family doctor-- if he does not think I am nuts already! Anything the layperson can read about immune testing that can make it so I look like I know what I am talking about when I go ask him? Thanks, LLM.

It is very difficult to decipher "weird yet normal" 4 yo behavior from PANDAS/PITANDS sometimes. We have several other children- so I ought to know strange 4 year-olds by now! I have a very, very hyperactive preschooler who enjoys rough sensation (squeezing, pinching, full-out jumping on other people!) yet is getting very particular about clothing. (too stripe-y; too pink; does not feel right; not straight enough, etc.) I have a stack of underwear every morning that I have to go through until we find the "right" ones. Socks, too-- thank goodness for summer! She is starting to scream for me (about 75% of the time)when I leave her- even to go to the next room. She must use a huge wad of tp every time she goes to the bathroom (she says she cannot touch her bottom- though I think that is not totally abnormal for little ones.) She told me she cannot get "bad angels" out of her head. She saw these "angels" weeks ago on a tv show that her older siblings were watching and she should have not have seen- it was a spooky scene with concrete angel fountains in a cemetery. She will not go too bed at night due to the "bad angels". She has also told me twice recently of being able to think of nothing but a certain toy-- like when we are at church and she says- " I can't stop thinking of my plastic egg". She does flop on the floor sometimes when she is asked to choose between grape or strawberry jelly or other easy things-- "i just cannot decide," she yells. If her braids are not exactly even in height and tightness-- the whole family better watch out! No known strep history for her. There probably is more, but I cannot think of it right now. My older girls with PANDAS suffered from such clear cut horrifying OCD- it was obvious there was a problem. I do not know if this warrants a PANDAS expert visit- or if not, GREAT (I would prefer not to spend the $$$) but where do I turn? I asked on the adhd forum weeks ago and got zero responses.

thanks for posting-- I have been wondering. I am so happy to hear this.

My 6 yo (just under 6 at the time actually) weighed , maybe?, 45-50lbs-- was started on 40 x 7/30 x 7/20 x7/ then I think it got fancy like 10 x 3 then 5 x3 or something. It is high for a reason. IT WORKS (in our experience) This young daughter did not experience weight gain that I noticed. She did have cheek puffiness for several weeks. My older daughters (11& 12 at the time) did experience weight gain that held on tight for months We saw NO improvement for 10 days minimum & more like 14 days, probably. By a month-- things were so much better, for all three of them. Best wishes, NMom! Keep us posted.

EXCELLENT POINT!!! & frankly, if, Heaven Forbid, we have a relapse (or a new trigger causing the same symptoms to recur) I will be grateful for the many months of peace my daughter has had.

We were posting at the same time:) My oldest daughter was on steroids (ordered by her LLMD) It was a small dose, but it was ordered after a very thorough and exhaustive lyme treatment was not kicking the psychiatric symptoms. It was too small a dose to be helpful, really, but it was enough for the LLMD to see that it would not be detrimental. A few months later, my daughter took the PANDAS doc dose and was immensely better by day 10. It did not "hold" but it "worked" and NO, ZERO, NADA physical symptoms of lyme returned during or after that big PANDAS steroid dose!

I do not know how to answer your questions- I am sure someone smarter than me can do that! IF (big IF) the steroids take away everything (or most of it) than I think the symptoms you are left with are auto-immune and maybe NOT symptoms of an infection. Does that make sense? I can't answer the lyme question with an sense of intelligence. You and I have talked before (and I will be happy to share anymore if I can help!!) & I will be honest-- I really wonder if this IGENEX stuff is a worthy of anything. I had a clearly positive lyme test (Labcorp)for one child. The second (who was clearly strep related) I chose NOT to do any lyme testing at all. It is an expensive, time consuming & in my case- not entirely helpful-- rabbit trail. Steroids helped my kids and pex did, too. The one who we chose not to test for lyme is 8 month post pex/ 4 months post IVIG and doing great. I am glad we did not test-- who knows what we would be doing now. Of course, I may eat my words.... If your son had, for example, poison ivy or an asthma attack and needed steroids tomorrow-- would you do it? Would you test for lyme first? I am not saying you should not test, unfortunately -- but this was the litmus test I used when deciding to go ahead with steroids for my non-lyme tested child. The best we can do right now, is only the best we could do it. This is literally like searching for a needle in a haystack. There could be countless allergens, irritants, wireless electrical signals, viruses, bacteria and who knows what else that might cause PANDAS. I wish I was more helpful. Praying for you--

I have a 13yo who also has (had?) lyme & babesia WA-1. We are also in VA. She has been diagnosed with PANDAS- though technically not strep-- if you get my drift We treated the tic-borne diseases first & then made our way to a PANDAS doc in MD (neuro). It is a very, very complicated situation you are in. We saw a great LLMD in Fairfax, VA- who got the whole picture and was very helpful. My daughter also would not speak for periods of time-- it was an "OCD thing". at the place she was psychiatric-wise and neurologic wise-- NO AMOUNT OF COUNSELING will help her (and many of these kids!). Feel free to PM me, if you want. Once it seemed the lyme & babesia was under control (a year & 1/2 of massive oral abx, mepron, plaquenil, supplements and even a few months with a PICC and IV abx) my child's physical complaints were mostly better, but OCD was still disabling. The autoimmune component was not fixed by the above treatment. Our LLMD was looking at Enbrel- but we ended up with IVIG then pex. hope that helps some?

a little background.. our 4yo is a terror-- very physical, constantly on the go, punishment means nothing to her. she is very on target, or even ahead, developmentally. She has a huge vocabulary, colors well, knows her letters and has for almost a year, very coordinated. she is extremely obstinate, loud and somewhat obsessive about particular things (amount of toilet paper she uses, hair being an exact way, sensory issues) We have several children and NONE of them have been like her. Even our family doctor asked me if I thought she had ADHD! I have thought that for a long, long time- but did not know if & what to do for a 4yo like this. I am also wondering if this is a presentation of PANDAS/PITANDS- given the somewhat OCD presentation. We have 2 older children with PANDAS and a third who probably has it, too. Any ideas where to begin? WE NEED HELP!!

Thanks for sending this. I emailed the links to my daughter who is a HUGE classical music fan- especially Mozart. She calls him "Mozzie"! She, also, could benefit from more Vitamin D- her PANDAS doc gave her prescription Vit D, as she is alomst completely nocturnal as well. Maybe reading about her beloved Mozart will encourage to go outside. Thanks!

One of my daughter's first symptoms to improve after pex was obsessive thoughts. She would sob every single night for hours because of the guilty, scrupulous and religious (who knows what else?) thoughts that would prevent her from sleeping. It was heartbreaking. We had been home for about a week when I realized that she had gone to sleep with crying for several days! That symtpom has not returned. Her pex was in January.

This may explain what I was trying to say up above. The test my daughter had done (this was after the prozac & luvox disasters) confirmed that my daughter had inactive genes particular to these medication, within the Cytochrome P-450 system. My link

Every child is different, but I will say that many, many parents on here (myself included) have seen horrific responses to prozac and luvox, and other related meds. My daughter turned in to a screaming, biting, kicking monster. I am not exaggerating. She got worse and worse on them . she finally weaned off after a several month trial of both meds. Later, after a visit to a savvy rheumatologist, we discovered that my child has a deficiency in the Cytochrome p-450 system, which is how the bodies breaks down toxins (including medicines like prozac). I think, if I understand it correctly, the prozac was building and building up in her system. She became violent after about 2-3 weeks on the prozac, as the dose was increasing. We did not have the same bad response to clomipramine (Anafranil). She took that for over a year, not sure if it helped much, though. Anafranil is a different class of medication, and I think was one of the first medication approved for OCD. My other daughter takes clomipramine for her PANDAS OCD. I honestly do not think it does much, but who knows. She is doing great anyways after pex & IVIG. I know of an adult who was treated for depression with Prozac. He became violent and raging, to the point where he had to be commited to an inpatient psych unit and was diagnosed as bipolar. He is now realizing the connection and wondering if his absolute anger and violent outbursts were due to Prozac, which was supposed to fix him-- not send him psychotic and to a mental hospital! I would think long and hard on it. I did see promising improvements when my daughter tried Riluzole, also. There is an NIH study (might be closed by now) for Riluzole and childhood OCD. Our PANDAS doc ordered it for my daughter, though. That may be an avenue for you. Best wishes!

You have been given good advice, I think by the other posts. Get the labs (even if you have to drive up there to get the doc to sign them.) Go see ENT if you can, but who knows what that is worth, as strep had not been this huge issue and you could probably go see 10 different ENTs with 15 different opinions on what to do. If it is going to cost oyu a bunch- maybe do not bother-- or if your child can "wait" - maybe you should get a second opinion- and not spend any more funds at the place that you are not gettting responses from. I know you cannot afford it now, but it might be the best thing. If you call now, it might be awhile anyway until you can see someone else & by then, maybe you will have won the lottery I wish I do something to help you, eljomom. This is rotten.

Best Wishes for you on Wed-- let us know how it goes!

There are lots of different brands & somewhere on here Buster had a chart comparing different brands. I have no idea if they are really that diff or not. Our PANDAS doc used Gammunex in office for one kid, but Georgetown used Privigen for our other child. Price is the issue there. Both kids got the headache, vomiting. As far as results-- I cannot compare the two kids- they are apples and oranges, however the privigen one is in better shape the than gammunex recipient. Probably has nothing to do with the brand IVIG. If this is the only way you can get it (cannot afford Dr K or travel) then go for it.

Georgetown has a different technique. They use a central venous catheter (femoral or jugular)and there are 3 exchanges, done over 3-4 days. However, they exchange a volume equal to (I believe) 4 and a half total exchanges. I think (I am not a dialysis nurse!) that they can exchange more through the CVC than through a peripherally inserted line, simply due to the bore of the catheter. That is AWESOME that it worked for your daughter! Georgetown's plasmapheresis worked amazingly for my 2 girls- one almost 9 months out and the other only 3 weeks. I would do it again in a heartbeat. Another mom on here asked me (very thoughtful question, by the way)-- if another child had milder symptoms and was offered pex, in the mode of preventing the progression that we have seen in 2 daughters already, would I do it? I thought & talked to my husband at length about it this weekend. We do have a 6 yo who was treated successfully with abx & steroids for vocal tics, sensory issues and fears. The answer to-- pex for "preventing progression" to chronic PANDAS devastation? YES. If it is offered to us for her, if she relapses-- YES.

you might want to look for mommd or mdmom I think she is from NC--

I do not have an answer for you- just to say that we ahve been there. I know how horrible things are for you now. IVIG did not really help my child, that I could tell- though we had almost 3 years of what you are describing by the time we finally got it. Steroids (a month's worth) helped a lot the first time she had them. Pex helped the most- She is just 3 weeks out and is about 50% or more better. It is remarkable. Is there anyway you can get pex? Is she able to do the therapy in FL? My child would never have been able to do that-- though I think therapy would be excellent, as I am comign to terms with the fact that this may never go away and learning to cope maybe the only thing that gets her to semi-independent adulthood. She is 13.

pm'd you-- but on why you SHOULD try for g'town-- not the info you were looking for, I know

For what is worth-- my now 6 yo ( who probably has PANDAS, also-- though I hate to say that yet) had a MASSIVE episode of paranoia and rage) the day after her tonsillectomy. She had adenoids out the year before. This was at age 3 1/2-- vocal tics started at 4 1/2, fears and sensory issues at 5 1/2 and it all continued until steroids in Feb this year- right before she turned 6. So, I think the removal of her tonsils made an impact-- she went bonkers the say after-- but it remitted. My older daughter has tonsils removed about 6 months post PANDAS onset- made no noticeable difference. Tonsils were tested for for multiple pathogens-- none found.

I wish I could vote twice (2 kids with PANDAS). one fit graph 2 exactly. exacerbations were very severe, and eventually, did not really go back even to the "elevated baseline". it became a chronic exacerbates state- if that makes any sense. That is what I voted for. the second had no prior hint of anything amiss. After inital exacerbation, no complete remission, each exacerbation got worse. So, like graph 2- but no prior issue and each exacerbation would get higher and higher.

She had IVIG in Mid May-- did not really see any change. We may be doing another IVIG in a few weeks- do not know yet. Does anyone know why pex vs. IVIG? I suppose: 1. availability of plasmapheresis-- there are not many facilities that do it this way (central line, 3 consecutive exchanges) and not many that do it for PANDAS (as far as I know, any ways) 2. Insurance or ability to pay for it yourself (hate to say it, but it must play in to it.. right?) 3. severity, I suppose. My children ( 2 have had pex) were both severely affected, nonfunctioning, even at the most basic levels from PANDAS. The child I am writing about now-- was inpatient psych worthy, if you get my drift I feel like we are living a dream right now. My daughter is here- she was just locked inside that PANDAS nightmare-- I still can't believe it!

I really hesitated, seriously, seriously hesitated to post this so soon. However, I feel like there may be some parents out there in latitudes-land who are weighing their treatment options. I know of at least one who was offered pex & too nervous (understandably) to do it. I don't want to say too much yet (it has only been 13 days) but pex did a complete miracle on my child. an utter, complete miracle. she went from.... not speaking or looking at us, hiding in a room under a blanket, (and has been this way for many, many months) to... eating lunch with us, talking to us like everything is normal, changing the littlest's diaper, hugging grandparents, clothes shopping, it goes on... There is much ground to cover still & praying there is no regression. I just felt a very need, almost instinctive in a way, to share this. Maybe someone out there is unsure of their next step tonight. I hope this helps someone.