JoyBop

Wow. That is a lot to take in. For starters we did call the eval but he wasn't currently on an IEP. This is the initial determination meeting. I did ask for help months ago bc things were going awry but there was no response. So I don't believe I could say they weren't meeting his needs because I'm not going to wait for the IEP to fail. Our doctor said that they would not be able to fix the problems she saw and said that if we were I a position to put him in this private school we should. Her opinion means a lot to me since she has known us for a long time now. He has been ignored too long, there are too many problematic behaviors in the class. 24 students and 1 teacher. Not a good recipe. So if we are pulling out to a private school and we have no intentions of asking for reimbursement or out of district placement from the school, we should keep quite til the meeting. All I want is for him to qualify for the IEP so he has something to fall back on come middle school. I totally trust and love the middle school he is going to and know I won't have any trouble there getting what he needs. 2 weeks to go. I figure I'll get trough the meeting and bring a signed document with his withdrawal that I will announce at the end if the meeting. At least that way I'll get the most accurate info.

Well its a done deal. I met with the psychiatrist today and she said that I should go forward with private school placement. She said that there were no expectations in school for his behavior or performance and that any normal child would take advantage of that situation. She felt that regardless of the IEP that would be rolled out that it would take a great deal of time to get it right. There were 24 kids in class and one teacher. 5 of the students were out of control and my son fed right into their behaviors. She felt a one on one aide would be necessary to get him on track but knows that this school in particular would fight against that. I don't intend to stick around for a fight. In any see, I got her full recommendation to place him in the small private school that she feels would be a great fit. He would be expected to behave and participate and would be given the skills and confidence to do so. I was urged not to waste anymore time. So that's a relief!! Now to decide when. The big IEP meeting is in 2 weeks. Should I stick around for the meeting or just make the switch? It would be helpful to have him qualify for the IEP for when he enters middle school. He's already into the charter middle due to a sibling that's there now. Does any one know if withdrawing him now would affect that meeting? That's a loaded question!

I don't have any legal insight but I'm going to guess that as long as you let them know that you are Enrolling her in an accredited homeschool plan that they can not bring up truant charges. I'm not sure what the laws are in nj but I feel for you as we have made the decision to remove our child as well. Are you going to so an online program?

Ive never posted in this area but thought it would be the best place for fast advice regarding IEP. DS8 has PANDAS and is in public school. We have made the very difficult decision to pull him out and put him in a small, private school where he needs will be met. The dilemma is this: DS is not currently on an IEP. I requested a full eval and the eligibility meeting is Feb. 5. Thats two weeks away. Given that we have made our decision, I dont want to put off starting the new school off any longer. Here's my question: Does the school still have to meet with us on Feb 5 for his eligibility meeting if we have already withdrawn him from public school? The only reason it matters is that it would be very nice to have the IEP status for when he enters middle school in grade 6. Otherwise, he may tank in middle school and we wouldnt be able to get him on the radar until January or so of that year. Any advice? Thanks so much.

So maybe good old fashioned salt water gargles will do the trick!

I guess it couldn't hurt and us an easy, low cost potential solution! My only thought (and it's certainly not a concern) is that when we are so busy using antibacterial soaps and agents, the immune system can become bored and begin to trim in itself. Just a though, but that's one if the theories about why food allergies is in the rise in our current society. Of course, if want to eliminated potential bacterial infections in my pandas kid, and if it helped I would do it! Just food for thought.

So true. I need a pep talk because I have quit journaling with all the stuff I am dealing with the school. I feel burned out, but I know this will help yield future answers. Thanks fir the reminder if the importance of journaling.

Cryptic tonsils means there are pockets and wrinkles in the tissue that can collect food particles, bacteria, and puss. Yes, lovely, I know. They can cause all sorts of problems including bad breath, breeding if bacteria, and difficulty irradicating infection. Some people naturally have wrinkly tissue on their tonsils causing this condition while others have has trauma from infection causing pock marks similar to scar tissue left after sever acne on the face. In that case, its evidence that the patient has had chronic and severe tonsilitis.

I hunk it's encouraging that the numbers are going down. However the antibodies are still high. The way I see it, it's those antibodies that are wreaking havoc, so it makes sense you are still seeing a flare. Time and patience, you will get there. It sounds like you are doing everything right and the numbers are coming down.

Thanks T Anna. There are so many ways to handle the medication. Let me clarify. 1- it doesn't matter what time you take the med so long as it is on an empty stomach and not taken with any other meds or supplements. Also should be take. One hour before food. I find late at night is the best time for me. 2- every brand (including generic brand) has its own unique dosing issues. Synthroid sets the standard. With that said, if you stick with a specific generic, you should be ok, but realize you may require different dosing if you switch brand. Many insurance cos do not allow you to specify which generic so this is another issue as you may be given whatever was cheapest and on hand on the day it was filled. With that said, I could not get my thyroid under control with Levithyroxine even after many months and increases in dosing. Other symptoms of hypo thyroid I have had, chronic hives and rashes, loss of hair (I have so much you would t notice but see tons on floor in bathroom and tub) thinning of eyebrows, difficulty choosing words even though in my head I am aware of what I am trying to as and that wrong words are coming out, quick to loose train of thought, confusion (aka. Brain fog) sleepy, lethargic , feeling down in the dumps, cold when others are warm. Just to name a few. You can also ask to supplement with cytomel. Its hard to come by as they always have manufacturing problems but its a good support.

Would you say it looks like hyperactivity or aggitation? My DS looks that way as well and I always considered it as a ramping up of adhd like behaviors. Always a first sign for us as well!

What do you mean by movements? Sorry if I missed something. I have to say, my DS had a terrible flare that seemed to last for months but he definitely turned the corner before Christmas vacation and has remained well! My DH was just saying that he thinks maybe we are seeing the positive effects of the tonsillectomy. I hope he's right! Glad your little one is doing so much better!

Airiel, if he is doing well, I wouldn't change a thing. As I've found, if your child is over stimulated, you will know!! It sounds like you have really been through the war. Its great to hear that he is doing so well! I wanted the stimulant t to work so badly!!!

Thanks Cleo, I really respect your input as you have been through all of this. News flash- I just got an email from the dr with some tidbits from the observation. She mentioned that he seemed to get along with peers, which is a big struggle for him. But bottom line- when doing work he needs to be redirected constantly. He is able to focus for seconds to minutes and needs constant attention. The teacher actually told her that he would do best in a classroom where there was always an aide and the dr agreed. Of course, this is different than a one in one aide, but it would be something. It also worries me as we would not have an aide at all in a private setting although its a much smaller and more controlled class there. The good part of the observation is that he is very bright and seemed to be aware of what was going on in class, even when he appeared to be messing around. Overall it sounds somewhat encouraging. I'll be meeting with her Wed for more details and guidance. As far as testing goes, my son is very bright, has a high IQ. He will have to qualify for IEP based on OHI for all his pandas symptoms. The adhd and anxiety are major factors. I may have a neuropsych test done privately but if there are no red flags on the schools testing I won't bother. My insurance will pay for one and I may utilize that option now that we have already met our deductible. The NIH did do some neuro psych testing but they don't release the results of them to the patients so that part won't be helpful. If my child is to stay here, the communication simply must change. Does anyone have any verbiage in their plan that dictates how often and how much is communicated? I feel very isolated from my child's classroom experience.

I always take mine very late at night. The important part is that you have to take it on an empty stomach, at least one hour before or after food. I need my coffee the minute I wake up so that doesnt work for me. I have never had a problem not being sleepy, but as with all meds. If you take it with food or too close to meals, or even with tums or certain other meds you may not even get its effects.

Airial, that is very interesting! Can I ask a question? Did your son have signs of ADHD before the PANDAS began? Im trying to sort out who it might work for. From what the I was told at the NIH, stimulants can and do work for some PANDAS kids. Unfortunately, my kiddo is WAY over sensitive to all meds we have tried, and to be honest, we are much happier to have "the real him". I have an older child who doesnt have PANDAS and is completely dysfunctional without his adult dose of Concerta. It is a miracle drug for him and we couldnt be without it. I was hoping for a miracle on this kid....I really was! What I saw was too dangerous and scary to try again. I also think it proves that he really doesnt have ADHD which is valuable in and of itself.

I totally hear you on that. On one hand, if I stay and fight, I get shut out in the come even more and my chikd will be at a stand still while all of the fighting ensues. I will be stressed and frustrated and have to hire a lawyer. It could take a very long time and all the while my child will continue to not have the right kind of education. In addition to all of that, I would have to wait for the IEP meeting (which should occurs by the first week in Feb) and neck hate an IEP which they have 8 or so weeks to implement. Then I have to let that plan fail and only then do I get to plea my case that the school has failed me. Because I was able to find what I think is the right school at a price I can afford, I'm highly considering cutting my losses and putting that money directly into his education. I hope that in doing so I can make a positive decision for the whole family. Its hard enough having two kids with pandas, 2 teenagers adolescent boys on too of them, a job, busy family life. I know it sounds like an easy way out but I just don't want to fight. If I truly felt my child would get awarded a private school placement I would muster the strength. But the bottom line is, I have a kid with a high IQ, and no real learning disabilities, all pandas related issues. This is one of the hardest decisions I've ever had to make. I'm hoping his psychiatrist has some insight as she just observed him in school. If she raves to me about how well it went I may have to reconsider and stick around for the meeting. But if she agrees with me that this isn't the right place I'm going to withdraw him this coming Friday. I'm so nervous.

You are so right Airial!

911 you were a very brave woman trying so many different meds. Although I too was desperate to help him regulate himself so that his life in school is t so difficult. I don't think I need to try another one, this one was scary enough. And it was such a small dose! Yesterday was better but his OCD, pandas quirks (as I call them) and obsessive and negative thoughts are lingering. It's like a minor set back. But we are now fully aware that he does not have reall adhd, it's clearly a symptom that looks like it.

Here's a good place to start reading. Important stuff to know about thyroid meds. http://thyroid.about.com/od/thyroiddrugstreatments/a/oct2006.htm

It's not so hard if you can find so done to help you with the paperwork. Just know that if you are looking for health insurance it will be secondary to what he is on now, and they may charge a monthly fee for it as well. But it might be worthwhile as they do cover deductibles and other covered out of pocket expenses. Although if he does qualify for disability there may be a waiver for premiums. Usually you can get both applications sent to you from the Medicaid office give them a call!

Just a thought, but maybe pandas kids need to stick to the start low and to slow rule even for these types of meds. Did he always have trouble sleeping? Typically if your thyroid is over stimulated you may have insomnia, heart palpitations, and other symptoms of being revved up. I know I always mend to change in very small incriments because I'm so sensitive to change. To a google search on synthroid vs generic. You'll see a bunch of research showing that there can be quite a dramatic difference in what each pill delivers. If he does seem to have symptoms from the med you might ask if the doc would start at a lower dose and increase it every two weeks if needed. If that's not tolerated, try 4-6 weeks. I wonder if there are any pandas savvy endocrinologists? When my tsh was in the 60s after I had my first baby, I could t even speak. Words came out but I made no sense. I could t read, count change, find keys or my car in the parking lot, and would find myself in places and. It know where I was or how to get home. It was very scary. It could have been HE but I never got that dx. Just severe thyroiditis. I never had psychiatric issues but my memory and cognitive ability were completely shot. If you have any questions I might be able to help with, please feel free to ask.

You should call your insurance co and ask about coverage for IVIG, but be certain not to mention PANDAS. many insurance company's outlaw this procedure with any mention if it. Ask them to email you their policy for IVIG coverage. You don't have to tell them anymore than your physician mentioned that your child might be needing it. You don't want to give them any red flags. Do you have an HMO or PPO? Did bc cover your visits to dr t? If you have an HMO you are stuck in your network unless you can win an appeal. If you have a PPO you may be in luck, but again, it all depends in your plan. Another question for your insurance co. Do I have coverage with a participating doc in NJ? If dr t is not and he does it at his office or surgical center it may not be covered. Its very complicated. The risk in having your ped order it without knowing everything I'm suggesting you know upfront, you may be banned from the IVIG when they hear about pandas. Every plan if different and some DO cover it. You want to know that before your dr goes for a pre auth. I work in a dr office and deal with these issues a lot, but every state is different. Where I live, insurance plans specifically exclude pans/pandas and any experimental treatment with IVIG. My plan goes so far as to exclude anything post infectious. (Encephilitis). If your company allows coverage for post infectious encephalitis that may be the way to go. If not, your doc will have to be a little more creative. Some have no problem getting coverage but for most of us this isn't the case I have heard the code for autoimmune encephalitis of an unknown cause with mental status changes has been successful for some. Bottom line: get the coverage policy, it might even be listed online. Google it for your specific plan. Find out if you can have a non emergent procedure out if state. Find out the facility it would be done at with either doc. If you find that it had to be done by your ped, have him email or call dr t to get advise on how to bill. I'm sure he's the master!! If you have any specific questions pertaining to insurance feel free to ask.

Sonrhere was evidence if PANS? Where the tonsils used to be? I hope your son responded well to abx and is doing better now. Sometimes it takes someone who thinks outside the box to get to the bottom if things.

It sounds like great progress all around!! I've been dealing with Hashimotos since I was 16. I have learned a few lessons along the way. My biggest tip is to only use the name brand Synthroid. The generic brand has a very inconsistent dose and there have been many manufacturing problems due to the very short shelf like of the medication. I take a dose that an elephant would take 300 mcg. The starting dose is 25! I have to take two 150s bc they don't even make a large enough dose for me. I weigh 125. In any case, I completely call off a cliff anytime I have ever tried generic so I would recommend to stick to the brand name even if you have to pay a little more. It takes 6 weeks for the bloodwork to show change with each dose you add, so make sure you have his blood monitored regularly, but not closer than every 4-6 weeks bc it is slow to show change. Its one of those meds you can't afford to miss because symptoms can come back within 24 hours and she. I miss a dose and can take days or weeks to get back on track. Granted, I have a severe case, but I wish someone would have been able to tell me all these things years ago. I hope the new homeschool works out! Please keep us posted.