Diagnosis question

[7upMom]

Have a question about sons diagnosis but first I prob should introduce myself since I'm new. Been reading posts for a couple days and such great info here from other mom's. It is sad but yet ssooo very comforting to hear such familiarity in what we felt was just "our" world that no one could possibly understand- unf feels good to be wrong about that cause it seems everyone here not only understands but also is very knowledgable/helpful as well!

My 9 y/o son started showing signs at 18 mths- 2 years old looking back, of course at the time, just thought he had a very bad temper. Since then the last 7 years has just been uuummmm- chaotic? idk if that even comes close to describing it but I am sure you all know.

He was diagnosed with rheumatic fever ( even though we never saw a strep infection in him) at just turning 6 and placed on long term penicillin by Blanks in Des Moines, we've still always struggled with ups and downs in behavior ( still not knowing to relate the behavior to anything other than possibly mental health) and then when he was almost 8 his pediatrician removed him from the penicillin stating that was long enough for him to be on it and it shouldn't be an issue anymore. Within 6 months he began tic'ing and developed ocd symptoms. For months I was told it was due to an allergic reaction to his meds but after months of a cogentin and no change finally they sent us on to Blanks Childrens Hosp again and there we met with an immuno specialist, Dr Elliott who did a bloodworkup and 3 months ago he was diagnosed with PANDAS. He is taking penicillin but still regressing, we have our 3 month checkup in two weeks and I am armed this time with knowledge now to ask better questions and get more info!!! I think if I am not comfortable in anyway after that then we will be making an appt with Dr K in Illinois!!

He has always been such a smart kid- and I know you PANDAS mom's know thats not to brag and you understand how smart these kids are. He has regressed to the point SO far of hating math- the numbers stick in his head, hating writing- he said it is hard to make the tics stop in his fingers for that long and then it makes his fingers cramp making the tics stop to write. He also feels compelled to count his tics, at school he feels like there is a face in the wall that will come out behind him, he has separation anxiety( he has missed a LOT of school due to this), as far as behavior in school they see no issues ( its like he saves it all up for home which I think I would prefer but it makes it really hard to explain to the teachers when he is inpatient or explaining why he misses so much school or why homework wasn't done and they should excuse him- they are just surprised and astounded and think its a "disclipline ,behavior " issue at home. I have given them information to help explain, but it seems to make it worse. They know he falls asleep in school at times ( he has serious sleep issues) but thats really about it. His teacher tells me I just need to teach him better coping strategies at home ggggrrrrrr- she should only live a week in my home then she'd understand more.

Anyway-my question though is this- He has been "officially" diagnosed with tic disorder/ocd derived from PANDAS and NOS/mood disoder. Currently he is going to a private school but I do not feel that is working because they don't have to follow any protocol with him and I pay good money for them to refuse to give him the help he needs- not smart on our behalf! His therapist is trying to push for a keyboard but the private school says no- not fair to the other kids. ugh so I am thinking about the public school its not big where we are in Iowa and would like to get an IEP. Since PANDAS is not in any category of a diagnosis and they are telling me tic disorder/ocd from PANDAS do I need to have the diagnosis separated??? Gosh I hope that makes sense- I know what I'm thinking in my head but am having a hard time having it make sense?? and my husband lol is telling me remember if they want to read a book- they'll go to the library lol. Thank you Chel

[peglem]

I am thinking about the public school its not big where we are in Iowa and would like to get an IEP. Since PANDAS is not in any category of a diagnosis and they are telling me tic disorder/ocd from PANDAS do I need to have the diagnosis separated??? Gosh I hope that makes sense- I know what I'm thinking in my head but am having a hard time having it make sense?? and my husband lol is telling me remember if they want to read a book- they'll go to the library lol. Thank you Chel

 

For the purposes of an IEP he could be classified as OHI (Other Health Impaired). That classification is just a qualifier for services. The actual services he receives should be based soley on what his individual needs are.

[7upMom]

I am thinking about the public school its not big where we are in Iowa and would like to get an IEP. Since PANDAS is not in any category of a diagnosis and they are telling me tic disorder/ocd from PANDAS do I need to have the diagnosis separated??? Gosh I hope that makes sense- I know what I'm thinking in my head but am having a hard time having it make sense?? and my husband lol is telling me remember if they want to read a book- they'll go to the library lol. Thank you Chel

 

For the purposes of an IEP he could be classified as OHI (Other Health Impaired). That classification is just a qualifier for services. The actual services he receives should be based soley on what his individual needs are.

 

Would PANDAS be classified as OHI ? I know that a tic disorder is but they placed tic disorder into PANDAS diagnosis and just not sure if they would consider PANDAS to be OHI

[dcmom]

Yes it is OHI- straight from my neurologist...

[7upMom]

Yes it is OHI- straight from my neurologist...

 

WOW that is great then/ thank you so much for that info, that will save me a ton of time thinking I need to get him separately diagnosed then!! I need to do a lot of research yet on the IEP's and how you go about even getting that set up. I am a tad worried about that process. Can you start off with a recommendation straight from your doctors office or is it on the school setting up eval's ? I don't want to switch him to the public school and then have them wait to see if he falls through the cracks before they start to get the ball rolling , I would like to have something in place upon switching him but is that just a fairytale dream of how it works?

[thereishope]

If your child goes to private school, they are still eligible for services from the public school district. I do not how that would work for trying to get special accomodationsin a private school. That would be hard to enforce from the school distric. Any special accomodations should probably be addressed with the privately school directly, maybe by recommendation from any intervention specialists.

 

The IEP process is long. Contact the school district main office and they can direct you from there.

 

If you are switching to public school, you can get an IEP in place before he starts.

[dcmom]

Although we haven't had to use it, my daughter's neurologist wrote up a request to create an IEP-OHI on her prescription pad, for me to give to the school. I don't know the process- I would hope if you are under the care of a psychiatrist or neurologist who would write up diagnosis and request for IEP, that there wouldn't be a huge issue, or a need to evaluate the child. I would come up with a proposed list of accomodations requested prior to meeting with the school.

 

Good luck!

[thereishope]

Maybe it depends on the school district or what you want out of the IEP, but I wouldn't be surprised if they'd want to do their own evaluations.

 

Even if you have a doctor's request, it's still a lengthy process. Again, probably depending on district. If you want an IEP for next year, start the process now.

[7upMom]

These were good suggestions - I think I will def take it to his drs and try to get them all on board also for that added help with it. Just the decision of what to do about the schooling alone seems like a lengthy thing.

I am curious to know if the majority of PANDAS parents do public school, private school or home school???

[Iowadawn]

Have a question about sons diagnosis but first I prob should introduce myself since I'm new. Been reading posts for a couple days and such great info here from other mom's. It is sad but yet ssooo very comforting to hear such familiarity in what we felt was just "our" world that no one could possibly understand- unf feels good to be wrong about that cause it seems everyone here not only understands but also is very knowledgable/helpful as well!

My 9 y/o son started showing signs at 18 mths- 2 years old looking back, of course at the time, just thought he had a very bad temper. Since then the last 7 years has just been uuummmm- chaotic? idk if that even comes close to describing it but I am sure you all know.

He was diagnosed with rheumatic fever ( even though we never saw a strep infection in him) at just turning 6 and placed on long term penicillin by Blanks in Des Moines, we've still always struggled with ups and downs in behavior ( still not knowing to relate the behavior to anything other than possibly mental health) and then when he was almost 8 his pediatrician removed him from the penicillin stating that was long enough for him to be on it and it shouldn't be an issue anymore. Within 6 months he began tic'ing and developed ocd symptoms. For months I was told it was due to an allergic reaction to his meds but after months of a cogentin and no change finally they sent us on to Blanks Childrens Hosp again and there we met with an immuno specialist, Dr Elliott who did a bloodworkup and 3 months ago he was diagnosed with PANDAS. He is taking penicillin but still regressing, we have our 3 month checkup in two weeks and I am armed this time with knowledge now to ask better questions and get more info!!! I think if I am not comfortable in anyway after that then we will be making an appt with Dr K in Illinois!!

He has always been such a smart kid- and I know you PANDAS mom's know thats not to brag and you understand how smart these kids are. He has regressed to the point SO far of hating math- the numbers stick in his head, hating writing- he said it is hard to make the tics stop in his fingers for that long and then it makes his fingers cramp making the tics stop to write. He also feels compelled to count his tics, at school he feels like there is a face in the wall that will come out behind him, he has separation anxiety( he has missed a LOT of school due to this), as far as behavior in school they see no issues ( its like he saves it all up for home which I think I would prefer but it makes it really hard to explain to the teachers when he is inpatient or explaining why he misses so much school or why homework wasn't done and they should excuse him- they are just surprised and astounded and think its a "disclipline ,behavior " issue at home. I have given them information to help explain, but it seems to make it worse. They know he falls asleep in school at times ( he has serious sleep issues) but thats really about it. His teacher tells me I just need to teach him better coping strategies at home ggggrrrrrr- she should only live a week in my home then she'd understand more.

Anyway-my question though is this- He has been "officially" diagnosed with tic disorder/ocd derived from PANDAS and NOS/mood disoder. Currently he is going to a private school but I do not feel that is working because they don't have to follow any protocol with him and I pay good money for them to refuse to give him the help he needs- not smart on our behalf! His therapist is trying to push for a keyboard but the private school says no- not fair to the other kids. ugh so I am thinking about the public school its not big where we are in Iowa and would like to get an IEP. Since PANDAS is not in any category of a diagnosis and they are telling me tic disorder/ocd from PANDAS do I need to have the diagnosis separated??? Gosh I hope that makes sense- I know what I'm thinking in my head but am having a hard time having it make sense?? and my husband lol is telling me remember if they want to read a book- they'll go to the library lol. Thank you Chel

 

 

7upMom-

 

My heart skipped a beat when I recognized a few names as I scanned your email. Another Iowan!!!! We went to Dr. Elliott, wasted a tremendous amount of time with pen & then injections. Ended up out in Chicago with Dr. K. Hey, I need to really read your post.We live in between Ames & DM. Feel free to PM me. Our 11yo boy is an early onset-er, too. Mis-dx'd Alphabet kid. We see Dr. Khosravi as his child psych. Wow, another PANDAS mom nearby!! I'll read your post and respond. Dawn

[dabel]

Hi .... DeAnn here. I am so glad to see that you are using this forum as a resource. These parents are pretty amazing! My son qualified for an IEP under OHI too. You should not have a problem with getting him to qualify. Then, like others have said, you need to write the IEP to accomodate his individual needs. Look out for that IowaDawn....she is something! Just kidding!!! She is one of my new found very dear friends. I had mentioned some of the similarities with your situations the other day. Hang in there and remember you are welcome to call anytime!

[Iowadawn]

7upMom, Yeah, And DeAnn is a crazywomen , I'm beginning to believe!! Hey I just sent you a personal message. My husband works for the AEA's which should be your first resource to get the IEP ball rolling in Iowa. Also re: Dr. Elliott. Hope to hear from you. (With all this snow & snowdays, I think we should snowshoe over to DeAnn's house and show up on her doorstep! "We're Here!!!!!") Feel free to call. Dawn

[thereishope]

I think it's a good mix of public, private, and homeschool. I do see a good amount of parents swicthing to home schooling because it is too overwhelming for their child during some exacerbations or they homeschool in hopes of limiting strep exposure. My children got o public school. Private would never be an option because of money. I could see that if I really had to I would try home schooling, but I will always try to keep in public. I have a 3 yr old at home and she is a handful. I don't se ehow I could do homeschool. My 6 yr old PANDAS son is well right now so luckily I don't have worries except for exposure to illness.

 

My son has an IEP for speech. I could not get PANDAS into his IEP as OHI for issues with the diagnosing doctor. However, I have PANDAS listed in his health history on the IEP and the school is aware of our "situation". Even though it is a public school it is not like a big city public school. It's only 24 kids in his class (total class size about 80) and it is a family like administration. So, I think they would work with me if issues should arrise.

 

 

 

 

 

These were good suggestions - I think I will def take it to his drs and try to get them all on board also for that added help with it. Just the decision of what to do about the schooling alone seems like a lengthy thing.

I am curious to know if the majority of PANDAS parents do public school, private school or home school???

[7upMom]

LOL, at this rate with the snowdays, school will be going all summer long!!! Thanks so much for the info you guys! It is so great to meet such caring people that just truly "get it". Deann you are just awesome, I prob bawled ( a happy relief cry for 10 min after I hung up) I think I've said it before, but you all will prob just get sick of the millions of questions I have , feel like I'm in that honeymooner phase of just trying to load my brain up with info and so emotional still over how darn good it feels to 1)get knowledgable answers and 2) know what your saying makes sense to the other person.

Dawn- Also, I'm interested to know how Khosr ( that is so weird cause that is our psych also!!!) felt about you going to Dr K- def we need to talk!

 

That also is the size of our school district, but I have heard that they just don't like 504's even, let alone IEP's- just don't want to fight with any of them- whats the code when trying to deal with the school smile and nice, nice, nice but firm ( man that can be hard to stay nice sometimes though when you are so frustrated with them lol)

[thereishope]

Schools don't like things like IEP's because it is a tedious process and ultimately it costs the district money because it may, in the long haul, include hiring more intevention specialists to cover all the kids. Once the IEP is in place I think it might be legally binding and like a contract. The district has no choice but to follow what it says. That is what your tax money is paying for so if your child qualifies, go for it.