New to this and full of questions

[sww817]

I agree with everything Vickie said about school. We have an IEP as well (even though he is four and in preschool). It took me some time to accept it but it is worth it to get the services. Get him tested as soon as possible. Like Vickie said, it is almost impossible to get qualified for services. And honestly, we have had services in school and private. The services in school have been the best because it helps him deal with his issues in the school environment, which is stressful for him. Also, the IEP can have special requirements put into place for things like taking tests. For example, if your child freezes up during a test because of fear of failure... they can stipulate extra time, fewer questions, oral exams, etc. Again, not easy to get... but it sounds like you are used to fighting for what your child needs. IEPs are their own animal... be prepared before you go in. There are web sites to help.

[thereishope]

My son had his IEP in place since he was 4 (he's 6 now). That is something very important for other parents to know. There are different rules for Early Childhood. It is easier to qualify for services in Early Childhood. And they will continue when they enter elementary. So, I do encourage parents of preschool age children who think their children may benefit with OT, speech, etc, to contact you district and get the process going. It's a long process and takes months. In OH, intervention starts at 3 years old. My son was not even in preschool at the time and he got services.

 

Also, if you send your child to private school or preschool, you are still entitled to services through the public school system.

 

I agree with everything Vickie said about school. We have an IEP as well (even though he is four and in preschool). It took me some time to accept it but it is worth it to get the services. Get him tested as soon as possible. Like Vickie said, it is almost impossible to get qualified for services. And honestly, we have had services in school and private. The services in school have been the best because it helps him deal with his issues in the school environment, which is stressful for him. Also, the IEP can have special requirements put into place for things like taking tests. For example, if your child freezes up during a test because of fear of failure... they can stipulate extra time, fewer questions, oral exams, etc. Again, not easy to get... but it sounds like you are used to fighting for what your child needs. IEPs are their own animal... be prepared before you go in. There are web sites to help.

[tantrums]

Good morning! Or rather afternoon, but first chance I've had to get on the computer today.

 

I'm actually a state of NJ Caseworker for people with Developmental Disabilities, so I am familiar somewhat with the IEP process. Most of my caseload is adults though, so I still do have much to learn. I guess my concern was if he is in a "flare up' then he could be improperly assessed. Although, in thinking about it, might be better off to have him assessed at his worst as they (the school) would need preperations in place to work with him in the future when he is like this.

 

Yes, he has had strep. Twice that I know of in the past year. He never presented with a sore throat, which is what worries me. Wonder how many more times we could have missed it? And to boot - one of his biggest fears has ALWAYS been the "throat poke" so I wonder if he wouldn't even tell me? He always presented in the past with croup and in looking at his throat - they would see the strep it was so bad (or the inflamed, red throat rather and then test). since so many kids with H1N1 got secondary infections and we seemed to sail through without, yet his behavior has been abysmal since, I wonder if we really DID sail through that?

 

Yes, I had Scarlet Fever as a child. I've read links around on that and still trying to figure out exactly what that means.

 

and I was just in the process of trying to determine if Carter had Chiari, which sadly, it is very likely that he does. I'm just feeling like this poor kid got handed the short stick genetically speaking

[sww817]

A lot of people on this board have reported exacerbations from h1n1. My son had it but luckily got over it rather quickly with medication. He was already on an antibiotic and we did not have any secondary infections. But we did get an exacerbation and are still dealing with the residual issues.

[dcmom]

Tantrums- You need to go see Dr Rosario Triffileti in NJ. (I am formerly from NJ). He has a ton of pandas experience. He is a pediatric neurologist. He can help you diagnose pandas and/or any other issues.

 

I am sorry you are having health issues at the same time- that is really rough.

 

My daughter has pandas, and definitely had a big flair in symptoms 24 hours after recovering from H1N1.

 

The best advice I can give to you, is not to waste time with docs who are not knowledgeable, or who don't treat pandas. Go see Dr T. Get your son on daily antibiotics with a possible steroid burst a bit later down the road.

 

You will get him better...

[EAMom]

It is good and bad that I have dealt with Chiari Malformation for years. It is similar in that it's something that many doctors either don't know about, or don't acknowledge. I've learned all to well how to advocate and navigate in the medical system and to push to find the right doctors. I had to do that for myself for a long time until I learned what I had and where I stand and how to get the right treatment. Now it shouldn't take me quite as long to figure that out for my child.

 

Isn't there someone else on this board who also has Chiari Malformation? Or did I dream that?

 

T - my heart goes out to you regarding this condition. I can only imagine how much you suffer.

 

Susan

 

I think it is Stephanie2's younger son.

[sww817]

I agree with what DCMom said about Dr. T. He is on this board and did a post a couple of weeks ago introducing himself and encouraging any of us with questions to contact him. It makes a huge difference when you talk to a doctor that understands and has experience with this. I know you have some doctors you like. It is just so easy to get off track. I wasted a whole year with misinformed doctors after I "thought" we were dealing with PANDAS. Just my two cents worth.

 

http://www.latitudes.org/forums/index.php?...&hl=rosario

[Stephanie2]

Your son sounds very much like my 5 yo who has PANDAS, but actually I wanted to touch base with you regarding your Chiari Malformation. I find it interesting because my 21 month old has Chiari Malformation (we don't know yet if he needs surgery) and I am starting to wonder if I need to have an MRI done for my 5yo to rule out Chiari in him as well. Could there possibly be a connection between Chiari and PANDAS???!!! I have wondered this because I believe that my 21 month old also may have pandas. Is there a possibility that the pressure from the chiari could somehow affect the blood brain barrier and increase the inflammation?

 

Unfortunately, there is so little known about both conditions that to find a connection seems impossible, but I'm curious anyway...

 

Welcome to the forum. I have learned more here about PANDAS than any other site!

Stephanie

 

 

It is good and bad that I have dealt with Chiari Malformation for years. It is similar in that it's something that many doctors either don't know about, or don't acknowledge. I've learned all to well how to advocate and navigate in the medical system and to push to find the right doctors. I had to do that for myself for a long time until I learned what I had and where I stand and how to get the right treatment. Now it shouldn't take me quite as long to figure that out for my child.

 

Isn't there someone else on this board who also has Chiari Malformation? Or did I dream that?

 

T - my heart goes out to you regarding this condition. I can only imagine how much you suffer.

 

Susan

[tantrums]

Hi Stephanie! So sorry you are also dealing with both disorders. What a nightmare, huh? I had originally thought the ACM would be on the back burner, but in my research this weekend, I'm also wondering if there is a link. I think you may be onto something with the pressure. My first step will be the ped neuro I suppose, but you probably know, finding someone who can help with BOTH of these situations is going to be very very hard! I also don't know where Carter stands at all with ACM, he may not even have it at all, but has started complaining of the skull based headaches and feeling "off balance" and he is a clutz, so I figured it was time to find out.