JAG10

Good point, Nancy...in school is exactly where they will be. I guess she'll have to wait til she gets back to the hotel. I could just die in Whole Foods! Did your dd fall asleep at all? Mine slept the first day, but not the second back in May. But Dr. K makes you get there at 7am, so maybe that is why? One other question, do you definitely get to see Dr. B one of the two days? I have a small list of follow-up questions.

Oh, a Friendly's too? That is dd's favorite! Mostly bcs of ice cream and part sentimental; my husband and I met both working at a Friendly's 24 years ago.....geez that makes me sound like an ole toot!!! Judy had mentioned a swimming pool at the DoubleTree, but that if she was going to leave the first day with the capped IV line (I forget what its called), then she couldn't swim. I guess I'll leave it up to her if she wants to get poked twice. I was planning on bringing the EMLA cream for her hand anyway.

That's a good place! Thanks, Tami Do they do the cookie thing at this Doubletree? When I told her that is where we were staying she said "You mean The CookieTree Hotel? ALRIGHT!!!"

Hi Nancy and Denise Thank you for posting they have WIFI at Dr.B's center, that is good to know! My dd11 has an Ipod touch which you can get a free texting app, but it only works with wifi (this was my compromise since EVERYBODY else in her 5th gr class has a phone.) Actually the fact she wants to text at all is testament to how far the first IVIG has brought her closer to her typically developing peers and willingness to participate in written communication Dd11 has her 2nd IVIG next Wed and Thursday, her first was 9 months ago in Chicago. About an hour ago, the phone rang and the caller ID read BCBS I panicked.....did they revoke approval??? No, it was an autocall reminding me to get a pap smear, whew! But perhaps I should take the hint, dd is getting better, I know her best days are ahead and the worst is behind her....now I need to start taking better care of myself!!! Please post if there are any decent eats you find near the center or Doubletree. I looked in the forecast and see snow showers next Tues as well; we'll be driving from Phila; about 3 hours. Thanks! Jill

Hi Anne, I would listen to his Voice America radio interview. My husband and I both listened to it before our phone consult and it will help you get a feel for where he is coming from and you can get used to listening to his accent. It is pinned under Helpful Links if this doesn't work http://www.voiceamerica.com/voiceamerica/vepisode.aspx?aid=43934

Hi I hope these questions aren't too personal. Do you recall your son being bit by a tick or do you think he got Lyme from you or neither? Was his Western Blot positive or one of the co-infections? Hold on to the memory of his glorious good day because that is who God intended for him to be. I think those days are gifts from heaven that tell us what is possible and to keep pushing forward to get our children well. Jill

I didnt see that part. Page 151, last paragraph

I read through it, but I must admit most of it went over my head....except the "PANDAS parents flocking out of the walls" part.

Thanks NGU, I'll mention it to the nurses and see if it's an option. I knew I remembered something along these lines and you would know!!!! How are things going for you guys? Can you update? Have you tested IgG lately and is it in upper normal range? I've been wondering about you and where you've been! Jill

My dd11 had deep, long staring spells as one of her symptoms, so much so she was sent for 3 EEGs all normal and she did have the staring spells during the EEGs. She did this while Dr. T was examining her and he wanted to send her for another EEG. I told him, NO, her EEGs are normal, it is not seizures, it is part of her PANDAS symptoms. Sure enough, totally gone after her only IVIG in May, 2010. I would not say it was a statue thing, just deep, long stares. She could actually talk sometimes while staring but would take awhile to break the blank eye gaze.

Hi Vickie I write this with love, girl! Does the SLP give him homework each week? This can be touchy; some parents want lots to practice at home, others rush to get it done during breakfast the morning of speech tx, and others just can't fit it into their lives period. I would say only 25% of my students faithfully complete their homework. After so many weeks of incompletion, I stop giving it until the parents request practice. You can imagine 70 kids individualized homework takes a lot of time to make up and copy to only have 25% actually do it. If he isn't getting homework, you can request it or several ideas of how to incorporate his goals into your daily communication with him. You need to think of the SLP as a personal trainer; she can show him the proper form (both artic and language) and tell him how to practice, but the individual still has to do the work and if they are only working when actually with the trainer, their progress will be much, much slower than someone who takes what they learn from the trainer, practices on their own and is then ready for more fine tuning and adjusting when they meet with the trainer again. I don't get bent out of shape either way; I know people have a lot going on in their lives, but the kids who practice the most at home are the ones who progress through speech/language therapy the quickest. When my dd was in 4th gr last year, she was in speech for a frontal lisp. I had to take her out because with what was going on with her PANDAS, it simply was not a priority we could focus on at the time; it was not one more ball we could juggle. As her PANDAS symptoms improved and her awareness increased, the lisp resolved on its own with a few pointers from mama. Jill

Hi Buster, I have a 5th gr PANDAS girl and I'm a school-based SLP, so between both of those, I think I can help you. I wasn't sure in reading your post if your dd artic goals were met or those are her remaining speech goals? If she still has difficulty with vocalic /r/, I would recommend looking into a SLP who has had PROMPT training. I had this training 1 1/2 years ago and have been able to help move along even the most difficult artic issues, especially vocalic /r/. The problem with /r/ is you can't really show them what to do with the back of the tongue. But with PROMPT, the SLP provides manipulation and pressure on the oral structures to get them where they need to be and create a memory for the brain. So for vocalic /r/, 3 finger pressure is applied to the interior side of the base of the chin to move the back of the lingual muscle while the child tries to make that 'er' sound, then the SLP twists their hand around to help form the correct labial position. TMI; PROMPT trained SLPs can help move forward stubborn artic issues. Ahhh, the math facts! This has always blown me away and been a deep narcisistic wound....how could my kid have problems with math when it was so easy for me? Dd11 could do simple addition in her head when she was 3, but I remember her being in 3rd grade and holding up a flashcard with 3+1= and she stared at it forever...r u kidding me? So, this is what I've learned; first, you need to make sure those +/- facts are in place and unfortunately there is a timing component involved that drives our kids over the edge! But it is improtant because you need to make sure she "knows" her +/- facts and isn't deriving them each time. I found that actually made multiplication easier. I like the singing suggestion in the previous post because singing is located in a different part of the brain. I have had aphasic patients who lost all speech, couldn't say a volitional word, but could sing all the words to Happy Birthday or Amazing Grace. My favorite for this is School House Rock; you should be able to find the anniversary edition on the net. Our girls have had many similar issues only my dd's began simmering in preschool with the WHAM episode in 1st gr. I only know this in hindsight like with the math; she could add in her head when she was 3, but was using her fingers to add in kindergarten. Warning to parents: children should go from concrete to abstract, not the reverse!!! She has also had restrictive eating ( I forget what class they called it, but the texture one) and handwriting that is the best and only record of her waxing and waning over the years when I had no idea what was going on. The eating and skin-picking issue resolved immediately with her first IVIG in May, the math and handwriting have slowly and steadily improved over the past 7 months with hiccups here and there. Are you sure these are lost skills and there isn't something still brewing medically? Does she only have difficulty with cursive because it was taught in 3rd, but she can print well? Does she still have the marginal drift? With our kids, the marginal drift, irratic handwriting, poor mechanics (capitals/punctuation), reversals; I have always viewed those as cognitive signs, not fine motor ones and not something OT will help. I know you asked for goal help, but in my experience with my dd who didn't get any proper medical treatment for PANDAS until Feb 2010, these are signs something may still be going on with her medically. My dd's lingering symptoms are organizational, task completion and some social stuff. Back to goals, each goal has several components. You have the goal itself which must be objective and measurable ( think stats.) We have to indicate where that service will take place, so for me I pull artic students out to the therapy room and write "therapy room", but for most language goals 2nd grade and up I push into the classroom and use curriculum-based literature as the materials to obtain the language goals within the general education classroom so I write location as "general education classroom." You want to make sure that is what is written and not "resource room" because that is what meets your child's needs, not the resource room. I suppose you could suggest that she help a 3rd grade student practice math facts, but that isn't something usually written in the goal itself, that is more specially designed instruction where you can be that specific with the mechanics of how you are going to accomplish those goals. The IEP team should brainstorm ways your dd can become comfortable with being timed on math facts. I would suggest trying to get her comfortable with "beating herself." So, she is given a sheet with 60 math facts and her baseline is how many she can get correct in a minute and she tries to increase that number until she reaches her goal of let's say 45 correct in a minute. You could also do it orally where she can answer flashcards orally, obtain a baseline and improve from that point. If she has lingering handwriting issues having both modalities may be important. I did this work at home with my dd. At first I used one of those 2 minute toothbrushing sand timers...you know what happened, don't you? Yep, she fixated on the timer rather than the math! And became very nervous. I thought the visual of seeing the sand disappear would help, but no! So then I used the timer on the microwave and that was far enough away from her she focused on the math. I would then have her graph starting with her baseline and plotting points until she reached her goal (graph plotting, another important math skill). They are going to have to figure out what works for your girl. Hope this helps some. I rambled, so ask questions if you want. Jill

I'm bad with the quote function on the forum but below is a post from Nevergiveup whose father is an immunologist and this is what I remember reading: Let's see. Maybe its becuz my doc runs a lot of studies for gammagard, Soooo can't say its becuz of anything other than experience. I do know that gammagard tries to make donor pools exteremely large therby eliminating differences in lots ensuring type of antibodies are truly very diverse. I believe they pool over 10000 donors in each pool. Also I think docs look at recalls to deterimine safety record. I have been told that pretty much they are all good. I know switching products can be risky, can have anaphylactic reaction with new product. I know our homecare will not do first product infusions at home. Plus if Danny is sensitized by switching products, he may acquire an allergic reaction to all ivig products, so switch carefully, and if he has experience with any other product I would stick with that. Some say Gammunez having no sugar is best for kidneys, mostly a concern for adults and especially seniors. This is me again; so switching products can cause an allergic reaction? Anyone have any idea why? The above post is from oct. 10, 2010.

Hi, so sorry for your family's trauma! The first doctor who turned us on to PANDAS was Josephine Elia, a psychiatrist at CHOP (Childrens Hospital of Phila.) Everyone says she's CHOP's PANDAS expert, but she doesn't treat many kids at all, most get turned away. Anyway, I remember when first researching PANDAS, I searched it with Dr. Elia's name and she had co-authored some research on PANDAS and catatonia. You could try searching with her name, maybe even email her, but I can't say for sure she will respond. Prayers for your son's wellness and your strength and perseverance. Jill

Hi Friends I thought I remembered reading that switching from one brand of IVIG to another brand increased risk of a bad reaction....is that right? If so, does it matter how far apart the two different brand infusions occur? Has anyone's child switched brands and did anything happen? Thanks! Jill

Laura- I couldn't agree with you more.

Very interesting post, Vickie. I've always thought it ironic that you have a set of parents who, for the most part, are predisposed to anxiety and functional OCD, AND THESE ARE THE PARENTS THAT GET THE KIDS YOU CAN'T STOP WORRYING ABOUT!!!!! God bless us all!

Interesting history Amy. I never did buy the theory it was ALL the mother's side hereditarily. I have that similar touch of functional OCD (and my goodness, please introduce me to an SLP who doesn't.) But NO auto-immune issues on my side whatsoever, those are all on my husband's side; his father had MS, a few of the girls have thyroid dysregulation, great grandma had RF. I guess our children made the perfect genetic predisposed storm that met the right microbe bolt of lightening.

You can apply the book to PANDAS, but it isn't actually intended to be about PANDAS. The moral of the story is to be true to yourself; don't avoid things you like because most others don't have similar tastes or interests, you will turn yourself inside out, upside down denying who you are on other people's suggestion. Instead of trying to describe the inside hurt the author made the character morph into other people's suggestions on the outside. It is a wonderful book, unless your child fixates on the literal transformations (Yikes, sorry!) It is one of my younger one's favorites and I too get choked up reading the ridiculous list of doctor's that couldn't help her. Harness the hurt into determination.

Hmmm I don't know, but I've wondered something similar....if the kiddos who have early onset (6/7 and younger) of "infectious-based/auto-immune mental illness" have a higher incidence of symptoms subsiding, diminishing or vanishing at puberty than the group of kiddos that have undetectable or barely brewing symptoms until pre-puberty (10-11ish) and then the Wham Bam onset of FUBAR? I know, too many variables to speculate. What is puberty's role?

Hmmm I don't know, but I've wondered something similar....if the kiddos who have early onset (6/7 and younger) of "infectious-based/auto-immune mental illness" have a higher incidence of symptoms subsiding, diminishing or vanishing at puberty than the group of kiddos that have undetectable or barely brewing symptoms until pre-puberty (10-11ish) and then the Wham Bam onset of FUBAR? I know, too many variables to speculate. What is puberty's role?

Stephanie, What was the top of the normal range for that age and what was the 2 y.o. IgG and IgA? Just curious if you don't mind sharing the measurements. Thanks

As someone who sits in about 100 IEP mtgs a year, this is one of the BEST suggestions I've read!!! Dang, wish I'd thought of it!!! Don't mind if I steal it, do you?

So glad you are observing improvements. My dd had PANDAS years before I ever knew it. I remember telling her psychiatrist in second grade "I can tell how she's doing by her handwriting. If her homework notebook comes home looking like an EKG, we're headed downhill." Other handwriting/cognitive issues I and other parents here have observed is a marginal shift where each line the child indents further and further, increased reversals (even in cursive!) spacing and mechanics errors. My dd would "zombie" so badly, she's had 3 EEGs done for seizures she would stare so hard and so long (Dr. T actually wanted to order another one when he saw her and I said THAT'S PART OF THIS!!! She's had 3 normal EEGs!!!) It is so refreshing to hear that your child's issues have resolved with abx. I believe my dd was sick for so many years before we knew what was really going on and she was almost 10 before the PANDAS dx that she needed IVIG to get her to make significant strides toward recovery. I would guestimate she is 75-80% improved and scheduled for her 2nd IVIG to hopefully get her the rest of the way there. She is also beginning puberty and there are some who say PANDAS can significantly resolve with menstration onset in girls, but that is not a given by any measure. Welcome Scorpio1 Jill

You could reach out to nevergiveup and coco who do multiple/regular ivig for their kids with success, but aren't on here much anymore. Melanie and peglem too. I'm sure there are many others.