bronxmom2

oops, it posted twice for some reason

Hi Erica-- my son definitely experienced a "calm before the storm" effect-- PANDAS symptoms disappeared just before he was actually sick. Many times, before I knew about PANDAS, I would experience the strange sensation of my son "returning" to me when he had a fever-- I would be suddenly talking to this wise, calm, tender creature. It is also officially documented... during his first really intense exacerbation, when his school insisted that I have him evaluated for ADHD, he was taking the WIAT (weschler achievement test) and the tester came out during the break and excitedly told me "this kid doesn't have ADHD, he can absolutely focus beautifully"-- an hour later he stumbled out of the testing room with a 104 temp and a raging strep infection.

Hi Erica-- my son definitely experienced a "calm before the storm" effect-- PANDAS symptoms disappeared just before he was actually sick. Many times, before I knew about PANDAS, I would experience the strange sensation of my son "returning" to me when he had a fever-- I would be suddenly talking to this wise, calm, tender creature. It is also officially documented... during his first really intense exacerbation, when his school insisted that I have him evaluated for ADHD, he was taking the WIAT (weschler achievement test) and the tester came out during the break and excitedly told me "this kid doesn't have ADHD, he can absolutely focus beautifully"-- an hour later he stumbled out of the testing room with a 104 temp and a raging strep infection. From what you describe, I would say... get him on antibiotics asap.

Hi Peglem, I just read this again and it made me really mad! Are you still trying to plan a trip to the east coast for treatment? If so you should see this immunologist in CT that some of us are seeing-- Dr. Denis Bouboulis. Maybe you could at least have a phone consult with him? This immunologist just sounds like such a bonehead compared to Dr. B.

Judy, did you come up with a solution for your son? I can't remember, are you also homeschooling?

Hi Elizabeth, I'm curious-- did you just enroll him in the k12 second grade curriculum or did you do their tests to see where he should be placed?

I am so so sorry to hear you guys are struggling! As you know, I am homeschooling my son. I am just starting, so I am no expert. I am still in the "unschooling" phase where I am trying to get a sense of what I can expect from him. I did subscribe to math and science curriculum through k12.com because I did not know how to approach those subjects and worried about being systematic. My son happens to be an unusually good reader so I let him read for much of the day but focus on history-- I am slowly trying to get him to write. (This is his big issue.) We are mostly just trying to have some fun and lift the gloom that had settled over our house. Also to exercise off those stupid steroid pounds!!! What you need to look for is a local homeschooling association. Here in NYC there's a big homeschooling community, connected through elists, and they're constantly posting events. I like the NYC community because they are secular, friendly but not prying, and have similar values as parents-- also the events they organize tend to be low-cost. Here are a few links I found: http://www.homeschoolingindc.com/ http://www.homeschoolcentral.com/support/w..._homeschool.htm Neither of these look perfect to me, but if you can find an association, just join it-- so you'll be more informed and connected if you do decide to pull her from school. I belonged NYCHEA for a year before I finally took the plunge. The school my son was enrolled in this year did mention the homebound option to me-- which would involve the DOE sending a teacher to our house-- and I would LOVE to have a teacher come to the house, to take the pressure off me-- and because after all I have no idea what I'm doing-- however the procedure for doing this involved getting a 504, and I am still committed to avoiding a label for my son at all costs. Also here in NYC the bureaucracy involved in getting something like set up is just totally overwhelming to me, potentially involving lawyers, etc. I don't blame them-- they are serving 1 million students surprisingly well-- but I find myself much more comfortable simply withdrawing from their... clutches. However, if you live in a flexible school district... let the school do the work for you!

Others have posted about Dr. Denis Bouboulis before, but I want to mention him again. He is an immunologist with two offices in Connecticut, affiliated somehow with Dr. Leckman, I think. Extremely well-versed with PANDAS and a very very nice man who.... takes insurance!!!!!!!!!!!! I consulted with him yesterday. My son completed PEX three weeks ago, and I am just so scared of "it" coming back....I wanted to know what could be done now to protect his immune system moving forward, etc. He had a message that I did not want to hear-- that, in his opinions, the immune system's memory post-PEX will simply reproduce the bad antibodies just as it reproduces the good antibodies, since nothing has been done to change the T-Cells-- in other words, that the benefit from PEX will be temporary. For this reason he believes that IVIG has a better chance of bringing permanent improvement. He ordered a slew of bloodwork (including lyme) and seems willing to work to get the IVIG covered by insurance. My son failed 10/14 pnuemococcal titers and has low-normal IgGs, nothing that will justify IVIG without further documentation. He switched us from Zith to Augmentin (600 mg twice a day-- my son weighs almost 70 pounds) and assured me that I was correct when I feared that twice weekly Zith was not enough-- it is not. I forgot to ask about IV antibiotics, which is a question I definitely wanted to raise-- I think I'll call him about it. Will see us again in about a month and hopefully be ready to order the IVIG. Again he is a very nice man, looked me in the eye and said he will see us all the way through. He said he is open to seeing more PANDAS patients. He does not understand why more immunologists are not interested in this. Like all the good PANDAS doctors he seems deeply interested in what PANDAS represents-- a complete paradigm change in the way we see mental illness. PS I am still hoping he is wrong about the PEX. My son is basically living in a bubble at this point. PM me if you want his contact info.

could you sedate her?

I was going to say the same thing-- money is also a HUGE concern for us-- I felt like I was taking a gamble on Dr. Latimer, because I knew I'd have to pay the $580 to consult with her, but I hoped that, once I had done that, she would be able to get the treatment itself covered by insurance-- and I was right! The only expenses I have had are the $580, and the travel expenses (we came down from NYC and had to put my mom up in a hotel for 3 nights to watch my baby). We took two trips to DC, one for my appt. with Dr. Latimer... the second for the PEX. The trick for you is going to be squeezing this into one trip. You'll need everyone's cooperation for that. You may need to see Dr. L on a Friday and plan to begin treatment on a Monday, and stay over the weekend. I find that emails to Dr. Latimer sometimes get lost in an abyss, so you should call their office and explain everything to Andrea. 301-530-9200

Dr. Cunningham's lab is now closed until January, so it probably wasn't for that... Was it an immunological workup? Checking for Immunoglobulins and pnuemoccocal titers?

Hi, my son had a T&A last March, and though it didn't stop the PANDAS, I think it did do a lot to get the raging strep under control so we could at least focus on the PANDAS. Recovery was difficult (3 weeks of pain), but I am so glad we did it. This is purely anecdotal, but my older sister had a T&A when she was 3 years old because of chronic "tonsillitis" as they called it then. She probably had (actually, has) ADHD-- she was really naughty, and she is still a mess, but she is functional. She never developed PANDAS and had no more problems with strep. I had strep constantly but my tonsils were never removed (why???) and I did develop PANDAS, though because my sister was so naughty I suffered quietly and nothing was ever done about it. I had no school problems but I had OCD and was suicidal by age 16. Anyway now that I understand PANDAS and finally understand what was happening to me, I wonder how my life might have been different if I'd had that T&A. I am glad I did it with my son and will do it with my baby if he shows any signs of anything.

Yes! Take is easy on yourself and your son! Take it easy, easy, easy... If your instinct is to take him out for a little while, and you can do that, I would do it. Last year when things were really bad, I kept my son home for a "mental health" day almost every Wednesday and we just took it easy or we did things that made us both feel so much better about him... things he could still enjoy-- museums, performances, etc.-- when he seemed so impaired in the school setting. His mental capacity was still there, but he was just totally unproductive. Things like documentaries have helped us so much. By the way I did not think my son would listen to me either, and he does. How old is he? My son recently had PEX (through Dr. Latimer) and, though I thought the academic issues were still plaguing us, I realize now that it really is getting better... he was "in a fog" like dc mom describes. So it will get better!

Hi Michelle, We have a similar situation, and I am now homeschooling. This is a HUGE relief for both me and my son, though my husband is really struggling. For K and 1st grades (last year) my son was in a fiercely competitive gifted school here in NYC, and it was a mess. Though they were able to see some of his behaviors in the context of giftedness, and were able to keep him engaged for most of the day, the stress was too much, and he simply ignored much of the work. (He spent first grade reading under his desk.) Also I felt the other parents did not want my child in the classroom. This year I moved him to a school near our house, thinking it was time to take the pressure off him and let him heal. It was much worse. He was bored out of his mind and it was impossible for him to keep his excitability in check. The teacher did not know what to make of him. Also I found that it was difficult for me, personally, to set aside my own ambition for him and see him in a situation where he was learning NOTHING. School NEVER felt right for us. Not from the first day of preschool. This was also exactly when PANDAS started, and I think the mega-exposure in the school setting is too much for my son's immune system. Anyway, I've only been homeschooling for about a month, but I already feel so much better and I am satisfied because I know my son is learning. He is 7, and he's doing 4th grade math and science. He reads several hours a day, and it turns out he has a real talent for history (which they just plain DON"T teach in schools)-- I am trying the "classical education at home" method, in other words he is studying ancient greece and rome, but in a very "unschooly" way. My child who has not written in two years just wrote the first page of what he's calling a novel about a boy who joins the American revolutionary army. I am seeing homeschooling (which may or may not be temporary) as a huge gift to myself and my son-- I refuse to give up on him-- I mean, I decided this year to take the pressure off (and put him in the "easy" school) but quickly realized that would not work either, because he needs the pressure, but he needs the right pressure.... good luck!!!

Lauren's mom-- have you tried giving her antibiotics?

Focus was a huge aspect of our problems as well... school experience was almost exactly as you described... teacher had never seen anything quite like it, ADHD did not seem to quite fit but something was obviously wrong. My son recently (3 weeks ago) had PEX and I would say that his behavior problems are almost 100% better, but the focus problem remains. It's better, but the problem is still there. I really want to avoid adhd medicine, so I am watching it for now. I am homeschooling my child. School doesn't work for him. He started out in a gifted school (disaster because of the focus problems) and then tried a nearby progressive school (BIGGER disaster because he was bored out of his mind). So now he's home. This has the advantage of keeping him away from strep. I do encourage you to keep looking for the root causes, and DO NOT accept a label that does not feel right to you. I am still hoping that the focus problems will be the last ones to resolve, and it will all be magically fixed for my son.

Just wanted to say sorry you're seeing this... I agree that I would let her rest as much as possible. My son, almost 3 weeks post-PEX, seems tired to me, yawning in the afternoons... my instinct is that he needs extra rest right now. And I have learned to have a great deal of respect for my own maternal instincts! I have been tracking everyone's stories, and it does seem that exposure to stuff after PEX/IVIG seems to delay the healing but not totally derail it. Good luck, thinking of you----

Hi FallingApart, I have been wondering how you guys are doing! My son is now 2.5 weeks out of PEX, and he is doing very very well...But not 100%. His lingering issues seem the opposite of what you are describing... his behavior/attitude/mood are SO MUCH better, but he still can't write. He still panics a little (less than before) at the sight of math problems. His academic work and his attention are improving, though. I can walk out of the room and he will stay on task... for a little while. He is starting to get some pleasure out of work... slowly. For us, I think, as people have mentioned, this is much a matter of habit as the underlying PANDAS. My son has struggled with this for at least 4 years (he is 7). I am trying to patiently insist that he work as hard as he can, to overcome this idea that he can't do anything. I guess it would have been foolish to expect his executive function to appear out of nowhere fully formed. He needs to learn it. How does your daughter look? The one thing I have definitely noticed is that my son looks different. My husband has noticed this too, and he is much less attuned. (He is my son's stepfather) He just looks so much healthier! Good luck, keep us posted.

I am so sorry you've had to go through this. My son just finished PEX a week ago, so... you know I really mean that. Has your son had immunological bloodwork? Does he have a primary immune deficiency? I guess I would seek regular (as in ongoing) IVIG and mega-dose antibiotics. Many of us just feel our kids have lingering infections that have never been eradicated. I sometimes wonder why they don't pull out the really big antibiotics-- IV antibiotics. I am living in terror of my son being exposed to anything. Good luck with your appointment next week.

Hi Michael, I just wanted to say sorry that you're experiencing this disappointment. As faith said, don't give up yet! I think it hasn't even been 3 weeks yet...

Hi. I guess I just meant... I can understand his concern, it's a valid concern and he sounds like a very interesting person. I mean, it is frightening to undergo a procedure that will change the way you think. You can tell him he will still be an interesting person! I know you said he used to be an avid reader and it's a little harder now... but what kinds of books does he read?

Hi Dabel, I find your post very interesting. I have a 7 yo son-- very very bright like yours-- and he also does not recognize his obsessions and incessant violent fantasies as a problem. I have looked into his eyes and shuddered at the thought of where this would leave over time, as he got bigger, etc. I was also interested in your post from my own perspective. There are several parents on this board who feel that they had PANDAS as children-- or even still experience it now-- and I am one of them. I suffered so much as a child-- though, for complicated reasons, I kept it much to myself-- I developed a sort of third person narration in my head, both as a coping mechanism and a symptom of what I never realized was OCD-- and I wrote. Wrote and wrote and wrote. Wrote and wrote through my twenties (though I was suicidal) I also tended to resist getting psychological help because whatever was causing me pain seemed so intricately tied up with the only thing that brought me joy. Anyway I believe I was cured of PANDAS by my pregnancy. And I have not written a word of fiction since. So I guess my advice is to honor what he is saying, as much as you can. He seems psychologically pretty astute.

thanks!

Recently someone mentioned an immunologist in Connecticut (about an hour from NYC)...I think he might work with James Leckman at Yale? Can't find the name... if anyone remember, thanks!

The fedex people I dealt with asked me to put it in a bag they had, into which the box with ice pack obviously wouldn't fit. I think this office was wrong... unreasonable, taking pleasure in making me suffer (I was obviously upset, I had a crying baby and an out-of-control 7yo) I agree a legit study would not have us sending things illegally.