peglem

My daughter's pediatrician is a professor at a med school. He uses my daughter as a case study and makes a point of his interns meeting her. He is making the next generation of doctors aware, at least among those students he has contact with. I have hope, though. As little as 2 years ago, awareness in the medical community was next to nil. I'm seeing more and more awareness and acceptance, even if they still don't really know what to do about it. Its all too late to save my daughter- but the message is getting out there.

Just my thoughts on this- I favor prophylaxis. While symptoms are a result of autoantibodies rather than infection, these antibodies are not just produced as a result of infection, they are produced upon exposure to antigen markers on microbes. More antigen exposure increases antibody production. Most abx do not destroy bacteria- just weakens them or interferes w/ reproduction so the immune system can fight them off easier. So, I think proph. abx will help the body keep the #s of autoantibodies lower, reducing the chances of a flare up.

I believe there is federal funding for an IEP, but in order to qualify for that, there's also a lot more paperwork and red tape involved, which the schools would rather avoid. I also think . . . but I'm not sure . . . that not ALL the funds come from the feds; that some, at least, falls within the district's responsibility, too. Or maybe it's just that for every IEP they're compelled to grant, the resources they have to devote to administrating that and staying on top of all the federal requirements is taxing on the staff, if not the budget itself? Perhaps they're required to have X number of SPED staff, and/or X number of school psychologists on staff for every X number of IEP students, or something like that, and the staffing is done at the district's cost? I'm really not sure. Maybe Peg knows that one. If there's a "negative" to the IEP, I think it might be the following. With an IEP, even if your child is "mainstreamed" into the regular course cirriculum, he's technically classified as a "special ed" student, which might be a stigma some kids would feel very strongly about. Also, usually with an IEP, one of their class periods (20 to 45 minutes daily) is dedicated to a "resource" period where a SPED teacher works with them on some skills that they are uniquely behind on, whether that's organization, prioritization, self-advocacy, etc. That's all well and good in lower grades, but as you get higher up in school, it can become cumbersome because that's one more class every quarter or semester that you can't fit in a basic requirement or an elective you want to take, something we're contending with now in high school. Another thing that, frankly, I'm not 100% clear on is how you "extinguish" an IEP, assuming you get to a place where that's appropriate and/or desired. My understanding of the 504 Plan is that you can extinguish it and remove it entirely from your child's file at any point in time. With an IEP, though, I think extinguishing it requires some agreement by staff, maybe even some retesting to demonstrate that the deficits the IEP was intended to address are no longer at issue for your child? That would be something to look into, especially if you're on the fence about which program is best suited for your child. Frankly, some of the accommodations my DS currently has in his IEP, I don't ever see being ready to set aside entirely based on his performance over the last 2+ years, so I haven't gotten too heavily into this piece of the puzzle for us. Good luck! The place to find out all the legalities and funding issues is http://www.wrightslaw.com/ Unless the law has been changed in the last few years, IEP's and special education records must be kept in a separate file from the regular education records and it is completely confidential. The sped file is not automatically sent with other records when transferring to a new school and can only be sent by request from new school w/ parental permission. Services granted/implemented on an IEP can be changed/suspended/phased out/discontinued by agreement of the child's support team (named differently by different states/districts)which almost always includes the parents. I know the school's do receive federal funding for sped, but I don't think it is fully funded by feds and usually requires matching funding from the states or districts. My own daughter has had an IEP and been in self contained sped classrooms since age 3. She's been in private sped school's since kindergarten, but there is no way she could manage/participate in regular classrooms at all. My experience as a regular classroom teacher is that IEPs/504s can be very difficult to implement, especially if you have a large class w/ multiple kids on plans. The teacher's level of experience and willingness to help also comes into play as, frankly, it is very easy to make it look like you are following a plan on paper for accountability purposes without actually following the plan.

Get the book, "What To Do When Your Brain gets Stuck". It helps kids understand OCD and gives them strategies for fighting it. Be careful with behavioral therapy- giving consequences for behavior that is not on purpose may result in the child becoming unwilling to tell you when she has problems, especially w/ obsessive thoughts, which you can't see.

Wow, like 7 years?! The 1st 2 years of that was only getting abx for + strep tests, but that was a lot since she tested + 3-5 days after finishing a course of abx. Then after T&A, we were off for a few months (very miserable), then started with prophylactic penVK...finally switched to zith (weird schedule-5 days on/7 days off) and for the last 2 years have been on 500mg of zith every other day. She does still get sick sometimes. We use nystatin for yeast or diflucan tablets if she gets vaginal yeast. I do give probiotics kind of sporatically, both acidophyllus and boulardii. But when on zith we don't get much yeast-other abx, especially augmentin, causes bad vag. yeast. Her doctor runs liver/kidney checks about every 6 months.

I would talk to the teacher and ask what she needs in order to be able to implement the accommodations in the 504 plan. Then when you have the meeting, request what she needs w/o telling the staff that she needs it- make it address your child's needs instead. I've been on both sides of this issue- both as a teacher and as a parent. No matter how badly the teacher wants to help your child, if she doesn't have the needed support to make the accommodations, she won't be able to do it. You're choice is to make accommodations that the teacher can manage on her own, or try to force other staff to help, by naming responsible parties in the plan. Basically 504s are for accommodations that do not require funding, IEP's are for things that require intervention from the sped department-therapy, sped teachers, etc. I would think the school would rather work out the 504 problems to avoid the expense of SPED. But, if they really want you out- you're probably going to have a rough time with them no matter what. Some school's are great about following the letter of the law and ignoring the spirit of the law.

I like the way you think! That's something to check out. I wonder if histamine is involved- I think hers is low because antihistamines, even the H2 blockers, make her crazy. She's also got low IgE (which stimulates mast cells to release histamine). Peg, I'm really happy that you've found something that helps Allie. I have some friends who get migraines, and they like Imitrex. I can't comment on histamine or methylation, but there definitely are certain co-factors needed to convert the amino acids into neurotransmitters. One of them is B6 in the form of P-5-P. It's not normally found in multi-vitamins. They usually have B6 in the form of Pyridoxal-phosphate (PLP). A great resource is a free online book in a .pdf format. I don't want to directly link it in case it is against forum rules, but if you google A Way Up from Down by Priscilla Slagle, you will be able to download to the book. It's just a great overview of all of the vitamins, minerals and supplements that can help balance out Serotonin and Norepinephrine. I know there has been a lot of discussion here about glutamate---I want to go back and see if she mentions anything about that in the book or on her website--I just haven't gotten the chance. If you would like, I can pm you the direct link. Good luck. Her SuperNuThera does have the P5P form of B6.

She's actually been on pretty high doses of B vitamins- we use SuperNuThera. Riboflavin is B2. But, I just read the SNT label- 422% of the recommended daily is only 7.5 mg. Wow, not as high as I thought. Thanks for the link- I think I've glanced through it, but need to take another, thorough look.

You go, Girl!!!!

She seems to get worse during the 2nd half of her cycle-the 2 weeks before menstruation, then after the 1st day or 2 of her period, she improves. But, there are other variables that make things hard to track- like she is recovering from some URT infection right now- a cold? and then she has IVIG every 3-4 weeks, and has just started synthroid 12 days ago. The neurologist also wants us to try a product called Migrelief: Ingredients Two Caplets Provide: Riboflavin............................................400 mg Magnesium..........................................360 mg PuracolTM (Feverfew Whole Leaf) .................100 mg PuracolTM contains high levels of parthenolide and assures the presence of all naturally occurring feverfew compounds which extracts may remove. to help with prevention. We'll start that as soon as we get it. We ordered online for that.

I like the way you think! That's something to check out. I wonder if histamine is involved- I think hers is low because antihistamines, even the H2 blockers, make her crazy. She's also got low IgE (which stimulates mast cells to release histamine).

You are so right to not believe this is a behavioral issue. Really? A 5yo with unwanted, obsessive thoughts that are interfering w/ normal functioning? And you can pinpoint almost to the minute when it started... I'm way across the country from you, so can't recommend a doctor for you. But I do want to congratulate you for being so on top of this!

Have tried 5HTP many times, but have never seen any effect at all. The really ridiculous thing is her pediatrician referred us to pediatric pain management a year or so ago and they told us to have the psychiatrist treat her because its behavioral. (after they talked with this jerk rheumatologist who had "ruled out" PANDAS, based on low titers). It feels so wonderful to have her pain taken seriously- I've all but given up on seeing new specialists and I was dreading seeing this one, too...so much heavy baggage I'm dragging around.

We were referred to neurology again, and someone here recommended one, so I requested her. Feel like I hit the jackpot. She doesn't know what the heck is going on with my daughter, although, she was the one that brought up PANDAS. Anyway, despite the valium I gave her, my daughter had a medium meltdown right there in the office (atta girl!). But, instead of sending us to psychiatry for behaviors, this neuro said it looked like pain to her (me, too) and rx'd imitrex nasal spray. Well, the pharmacy had to order it so I wasn't able to fill it until today. All the way home from school Allie was screaming and thrashing and whamming...so I tried it out as soon as we got home. It took about 10 minutes and then she was not only calm, but happy and communicative! A few hours later she was starting to amp up again, so I gave her another dose- 10 minutes later, she's happy again. So, I'm pretty impressed, but there must be a catch! Is it going to become ineffective after a period of use? Will I discover some nasty side effect? Maybe I should remain blissfully ignorant, but what has been your experience?

A good site: http://www.anxietybc.com/ Look under resource documents for some helpful materials! We (the schools, too)spent too many years trying to address my daughter's problems behaviorally.

Not normal, in my opinion. Have you checked thyroid? Some medications can affect thyroid function-usually resolves when med is discontinued.

Christine, check your email. Dr. S will refer you for help. Its been very recent, but since St. Joe's pediatrics has merged w/ PCH, there seem to be some better practitioners there. Anyway, get an appt. w/ Dr. S- tell him what you are frustrated/concerned about.

Wanted to say, too, that I highly value pandas16 sharing her experiences from the patient viewpoint, especially since my child cannot share her viewpoint with me. Other people's experiences help me to make sense out of what she is trying to communicate sometimes. Thanks for the parenting compliment- I sure don't feel like a great parent most of the time. Lately I've just been feeling very old and worn out. Just treading water, frequently going under and so uncertain how things will end up for my daughter. I'm going to keep trying though...maybe something or someone will come along who can help.

I know. Just wanted you to know that what I said was based on info that did come from knowledgeable docs.

Well, I certainly apologize if my post scared or upset anyone. I very deliberately stated that it was my opinion, and what I think happened in my experience. Seroiusly, my daughter's condition has me very stressed and isolated. I try to be very careful what I say in my posts. You'll not find me stating anything as fact that does not have a scientific basis or a citation to back it up. Truthfully, my experiences w/ my daughter are extremely different from most people on this forum and I try not to post anything unless I think it may have some relavence for others. I have no problem with others correcting my information if I've said something untrue or even having people disagree with what I've said, but, I feel bad when people want to muzzle what little I do contribute. Edited to respond to this from Eljomom: When my pediatrician talked to Dr.'s Cunningham and Latimer a few years ago, he asked about if brain tissue was being destroyed (because he and I had discussed this- if there was already too much damage to the brain) and their opinion at that time was that PANDAS does not attack and destroy basal ganglia tissue, just interferes with signaling. That's what my opinion was based on.

Great you've found something to help. I am so afraid of rocking the boat w/ any doctor who seems willing to help. Maybe i could bring that up once a relationship w/ the endo has been formed. I've got a serious problem w/ being leery of doctors- just too many of them won't/don't help. I was so thrilled when this endo did not blow us off!

cab- I'm in AZ. There are some docs here who are familiar with PANDAS. Let me know if you want names- I'll PM some.

Hard to say-variable, I guess. She was recently dx'd w/ autoimmune hypothyroidism and started synthroid last Friday. We've seen slight improvements with that, but still has intermittent problems with her hands- sometimes looks like cerebral palsy the way she holds them all curled up in front of her shoulder. She sometimes will not use them, and I wonder if she's having numbness and tingling. It just seems like every time we start moving in the right direction, something else pops up. We've got a neurology referral in the works (again). I've got to try to get some of this stuff on film because we have to use valium in order to get her into an office for an exam and that makes her present differently than what we see at home.

I think the best time to run labs is when your child is the most symptomatic. However, that also seems like the hardest time to do a blood draw.

My opinion is that the autoimmune "attack" is different. In RF (and many other autoimmune diseases) antibodies directly attack and destroy tissue. In PANDAS, the antibodies interact w/ receptors, disrupting function, which can have an effect on learning and the development of brain "pathways". I think my child has permanent problems due to untreated PANDAS during critical periods of development, so some pathways that would have developed, did not. There is no detectable damage to her actual brain tissue, just a lack of neural connections.