Need advice on IEP

[JoyBop]

I have already received so much help and support from you all on this topic, so thank you!

 

Teacher conference was interesting! To hear that DS is "falling on the floor" and out of his seat at least 20 times or more in any given 45 minutes was shocking! The teacher adores him and sees that hes not a trouble make. (He really is a cutie!) But he is unable to access the program.

 

I have a complicated question I was hoping someone who has had experience with this to answer. For those of you who are dealing with PANDAS as their reason for IEP, how do you specify that the services may wax and wane? I know hes a mess now, but what if he miraculously looks well in a month. I want to ensure they dont take him off the plan. And if we do have that delineated, how do I trust that they are going to accommodate him at the proper time?

 

I obviously do not get enough info from the teachers! I am frustrated to say the least. I have requested a general aide be placed in the classroom immediately until a formal plan is developed.

 

They are already moving him to a lower math class with more teachers and small group instruction. This is sad as he was so good in math prior!

 

Any advice is welcome!

[LNN]

Our 504 specifies that the disease waxes and wanes and that teachers/school personnel should consult with parents whenever behaviors seem questionable to discuss whether IEP accommodations should be activated. In practical terms, I meet with the teachers at the beginning of the year and tell them to email me whenever they have questions. Some do, some don't. I also email them whenever I see things at home to give them a head's up and include one or two things I'd like them to do (e.g. please put his social behavior on your radar, seat him next to girls or in front of the class). This sometimes prompt them to reply with info I needed to have but for whatever reason, they weren't initiating the conversation.

 

As for the lower math class, I'd see this as a good sign. I often explained to teachers that teaching him when he was in a flare was like trying to get sound waves through jello. The ripples happened, but at a much slower rate than it normally would. Having more teachers and less pressure could be helpful. Try not to mourn. In 3rd grade, my DS took a standardized test meant to assess his "learning potential". (in the midst of lyme treatment). He tested at 93 - just two points above "below average" and just barely eeked his way into "low average". I was crushed. This was a boy who at 4 asked me if the universe had an edge to it and if so, what was beyond? In 3rd grade, he was a mental mess. Two years and many, many biomedical interventions later, they took the test again in 5th grade. He tested at 110 - just two points shy of "above average" and a 17 point increase, which is a swing that's pretty unusual. And he still wasn't at what I'd have called 100% at the time. (of course, now we're transitioning to Common Core and all the kids are struggling - familiar territory for us.) I have friend who's not often on the forum anymore but her DD's IQ tested at something like 80 when sick and 120 a few years later when healthy.

 

So focus on getting him well and know that time will heal. He may lag behind for awhile but if the learning potential was there before, you can get it back. In the meantime, he has an opportunity to learn coping skills and perseverance and character. My DD has always had an easy time academically and is now beside herself as she hits her first struggles with division. DS is so used to struggle that he's much better equipped to handle what life throws at him - and that skill will carry him way further in life than math skills.

Edited November 22, 2013 by LLM

[JoyBop]

Oh the common core curriculum is ridiculous! Dont even get me started!

 

We tested our sons IQ back when this all reared its ugly head and his IQ was on the low side of gifted but his processing speed was slow. It will be interesting to see if/how much of a decline there has been. I have faith that this will pass and he will regain his loss as soon as he can.

 

I feel like Im damned if I do and damned if I dont include an the fact that his need for services may be intermittent. The school has proven to me that they are not acting in his best interest. I am however, making progress in getting him those service. Just trying to figure out the best way to carry that out.

 

By the way LLM, would you kindly post the link about recepters and dopamine again?

[Hrosenkrantz]

My child's IQ has also waxed and waned. He tested too high for services when his district first tested him; a month later, they scored him, I was told. ``borderline m.r.'' -- how does that happen in a month, going from too high to get an IEP to such a low IQ? We did a full neuropysch about nine months later and he scored a 103.

I'd also be interesting in IEPs that reflect the waxing and waning...

[LNN]

By the way LLM, would you kindly post the link about recepters and dopamine again?

 

Which link do you mean? (I have hundreds!).

[rowingmom]

DD's multiple diagnosis from the ped psych helped us a lot. HF Aspergers/ADHD helped with social and sensory/attention accommodations, motor delay dx helped with OT/PT accommodations, especially for physed. The school knew which accommodations were specific for each diagnosis. I didn't have to ask for anything, just reviewed it with them.

 

DD always had waxing/waning, especially during abx treatment, and although DD's IEP doesn't stipulate that this may happen, the school just uses accomodations accordingly.

[JoyBop]

Thanks to all for sharing your IEP experience. Keep them coming!

 

LLM Im trying to understand the basics of dopamine and receptors, what they do, how medications work, ect. I want to make a better informed decision about meds.

[3bmom]

I think you personally have to sign off of an IEP. Also auto-immune disorders typically have periods of remissions and flares. We didn't have an IEP but a 504 disability.

 

If you have problems there are advocates who know the laws and exactly what needs to be provided. We found out later with another son who has dyslexia and Irlen that the school district should of paid for his Dyslexia tutoring since they didn't offer it but it is evidence based science.

 

An advocate costs money but might be worth their weight in gold not to mention the hours and stress preparing for meetings. ;D

[JoyBop]

Good point 3b. Our psychiatrist works with the district and for the district at times and she is well respected IE they won't mess with her bc they want to look good in her eyes. I may not want to shell out the cash for her to be present but she is willing to submit and plan and make phone calls for free. She's not your typical psych and does weekly CBT and educational plans with her patients so we are very lucky.

 

Given the situation we have already counseled them on what pandas is I will leave well enough alone and make them cater to his needs ongoing. Why should I give them a break when they have shown me they can't be trusted to take care of things.

Sorry for the rant, I'm just so frustrated and this is hard enough!

[LNN]

I don't recall a specific link about dopamine receptors but I'm guessing it had something to do with my recent comment about how VDR Taq affects your ability to make dopamine from Vitamin D and/or how COMT, MAO and VDR all play a role in how we synthesis and break down dopamine. To wade into this, you need to get into a discussion about methylation. There are two good overviews:

 

This week there was a radio show with powerpoint slides talking about neurotransmitter balance. it touches on methylation but not in detail. it's a good intro on why the topic has such impact for our kids http://drjessarmine.com/index.php/radio-show/ click on show #3 and download the slides

 

There's also this "Yasko for Dummies" booklet written by a Yasko student http://autismnti.com/images/Website-_Yasko_Education.pdf that tries to explain why it's important.

 

These things look at the genetics of how our bodies are inclined to synthesize (make/degrade) dopamine (but remember having a gene mutation doesn't mean that mutation is turned on - it might get turned on later in life or never at all. It just means it has the potential to be turned on). But there are also many dopamine receptors. These are like toll booths. Receptors can be blocked by certain drugs or can be activated by certain drugs (or proteins, enzymes from foods) and thus influence how much dopamine is allowed to go thru a neuron. So in my very crude understanding, synthesis is a matter of how many cars are on the highway. Receptors are a matter of how many lanes or toll booths are open. I could be wrong - neuroscience has been forced on me, not something I have a natural affinity for.

 

If I haven't answered your question or these links weren't what you were hoping for, let me know and I'll try again.

[Mayzoo]

This looks like a fairly good resource for IEPs (we home school so I have not read it all):

 

http://pandasparentsymposium.blogspot.com/p/dr-jamie-candelaria-greene-phd-bcet.html

[JoyBop]

LLM your knowledge blows me away!!! Thank you. I am just beginning to read about these things. I will follow your leads and let you know if I have any more questions but I think that link about the nuerotrqnsmitters will hit the spot!

 

I have hired our local psychiatrist to be my advocate at our IEP meeting. She is the one who diagnosed DS and knows how to treat the whole child from medical to emotional to behavioral. I am so lucky to have such a doctor!

[JoyBop]

Mayakoba, awesome resource!!!! I just printed it and emailed it to our advocate!

[airial95]

We had and IEP specifically for PANDAS for my son for 3 years through pre-K and just shifted to a 504 for K because the services were weren't needed anymore, just the accommodations.

 

We handled the waxing and waning very simply - but he was younger. We described how it comes and goes, and had very detailed documentation in the IEP - however, the IEP - and all services involved - were in place for the year. Period. Until the next IEP meeting. If things changed significantly enough, a new IEP meeting would be convened to discuss changes (which has to be done legally anyway). We did not include any way to turn on/off the IEP through the year.

 

We liked it this way for a couple of reasons, first of all, I didn't want the school changing anything on him without my express consent. At the time, he was consistently improving, but still dealing with chronic strep. So we also didn't want his bouncing between placements to often as things went up and down. His teacher liked it because he was in an EELP (Early Exceptional Learning Program) class that had kids with a wide range of abilities. My son has tested gifted on all of his developmental assessments, so she found that having him around when things were good had a great effect on the other kids. (They're supposed to put some "mainstream" kids in these placements for social cues, etc...but apparently they rarely do at the pre-K level where we are).

 

It worked well for us. Now, both kids have a 504 plan because they do not need full services - just accommodations. We have it written into the 504 plan that in the case of a documented strep infections - accommodations automatically apply. That goes for strep for our kids, or just strep in the classroom. As for make up work for low grades/missed assignments. We can request that from the teacher for assignments up to a week PRIOR to being notified of the strep infection. (We saw a clear pattern with my daughter). We have it in the 504 that we have to request the make up work/tests - it's not automatic. This was a compromise my husband and I came up with. We have been concerned (especially with my daughter who hates homework even when NOT flaring) that she would eventually try to use her PANDAS as a crutch, or an excuse to get out of assignments she didn't want to do. She is in 2nd grade, and as of right now, doesn't even know what's in her 504 plan specifically - and for now we are good with that. By requiring US to contact the teacher for the make up work, it provided us a level of accountability for her not trying to use it when she just did poorly on an assignment for lack of effort/studying. (It doesn't happen too often, but from time to time she's a typical 8 year old kid who would rather be watching One Direction videos on YouTube than researching the Seneca Indian tribe...)

 

Hope some of this helps!!

[jferinga]

I am very familiar with IEPs. An IEP is typically for a child who has a qualifying disability. The law lists what are qualifying disabilitys as described in the Individual with Disabilities Act (IDEA). Keep in mind operatively this means a "recognized" disability and that the disability must adversly affect the child's educational performance. I have encountered children who have a disability which is not adversly affecting their educational performance and thusj they have no IEP.

 

According to IDEA the following are qualifying disabilities: autism, deaf/blind, deafness, hearing impaired, mental retardation, multiple disabilities, orthopedic impairment, serious emotional disturbance, specific learning disabilities, speech or language impairment, traumatic brain injury, visual impairment including blindness, and other health impairment.

 

PANDAS and PANS are not listed as a qualifying disability and I would be highly suspicious that PANDAS is the reason for the IEP. The symptoms associated with PANDAS may fall under several qualifying disabilities however. Prior to the IEP there is complete process the school district will follow. One part of the process is completing a psychoeducational evaluation. This evaluation is conducted by a school district psychologist with input from each teacher, a parent, and opthers who may be in contact with the child. Typically the school psychologist will list recent behavioral and educational problems. The school psychologist will also use protocals to clinically measure behaviors. Should the child not qualify for an IEP the school district may have a 504 plan for the child. The 504 plan will typically provide accomodations given to the student.

 

First find out what the qualifying disability is. The second problem you have is that the treatment options listed for PANDAS like antibiotics will not be provided by a school district. You may want to research the qualifying disability in conjunction with effective treatments for the associoated symptoms of PANDAS. Most of the symptoms of PANDAS can be addressed through accomodations. I did read somewhere, I'm looking for the citation and research, that cognitive behavior therapy (CBT) works well with some of the symptoms you may see in obsessive compulsive disorder.

 

Prior to the IEP ask for a copy of the psychoeducational evaluation and a draft copy of the educational and behavioral goals (or the entire iep if they will provide it). If the district says they cannot write them in advance let them know they can write "draft" on the IEP so it does not appear that they are predetermining services, placement, goals etc. Ask questions to understand the nature of the IEP referral. If the nature of the IEP is due to behaviors ask to see the data. There will be a "trigger" typically. If behaviors are very servere and pervasive there will be a behavior support plan where they will teach your child a functionally equivalent replacement behavior. Given the ongoing issues of PANDAS you may or may not want that.

 

PANDAS appears to be triggered by an infection and or virus. The manifestation of symptoms indicates a possible psychiatric problem. Many of the PANDAS symptoms are listed in the DSM IV as conditions of a psychiatric condition. There are research based treatments which are effective for one disorder and not a different one. For example bi-polar and ADD/ADHD have similar symptoms and childhood onset bi-polar may present as ADD or ADHD. The treatments for the two can be very different.

 

I am not a doctor nor a psychologist. I have had the pleasure of working with kids with disabilities and reading several clinitians manuals regarding disabilities, treatment plans, behavioral interventions etc. I see PANDAS as causing issues since there may be an underlying medical condition like Lyme Disease or a strep infection which school districs will not treat for. School districts will though provide services to address the symptoms, often times displayed as behaviors, which I could see as masking the symptoms of the underlying condition. Again from what I have read one treatment of antibiotics, IVIG or plasma exchange (as reported by others) may alleviate symptoms for one week, months, years, or permanently. If the child hides the symptoms then you may not know when a future onset occurs since the child is compensating for them.