Kristen-re Coley's "un-dx"

[peglem]

Hope you don't mind me moving this, I wanted to respond, but not side track the other thread:
We are sick here and VERY tired...but I just popped in cuz I'm gonna bust if I dont' tell you guys this...I know this isn't EXACTLY what you intended but since you wanted some positive things here you go:

The mail just came, and in it was the summary report from the developmental ped. The VERY last sentence:

"Coleman does not, at this time, appear to any longer have behaviors consistent with the diagnosis of PDD-NOS, and this diagnosis is WITHDRAWN."

There's a lot more that I want to talk to you about in her report...but I can't even tell you the weight and darkness that seems to be gone just from that one sentence! I know it's not that simple, but clinically he no longer had PDD, and that feel triumphant!

and, now I can exhale!


First of all..WOWEE!!

But..not to rain on your carnival...but, how does this affect you in terms of services? I wondered too, w/ Coley's fluctuations in skill levels and stuff, was this eval done on a "good" day? I'm just worried that you may lose some support services, that he may still need to kind of fully transition.

[Kristen (ColeysMom)]

Nope it wasn't exactly a good day. Remember she was the one that got me all fired up about the mirror writing and referred us over to the neuropsych.

That's why I say there's more...I know we aren't done yet AND I'm fully prepared for another diag, like maybe ADHD or something...but just knowing that the OCD, and social issues, eye contact, all those things that gave him the diag to begin with are managed...

As far as services go, school already writes in the IEP that he no longer presents with PDD, but does have some learning/developmental challenges...they are really very good.

They believe that his issues are largely medical, infact at our last meeting described a girl in HS that was profoundly behind and wa FINALLY properly dxd with diabetes and with that there was a trmemendous change in her acedemics...this is how they view AND fully support Coley. They know we are on a journey to figure out what is causing his difficulties and until we get them ironed out (and even after) are willing to do what is necessary to help him, regardless of any label, largely based on how THEY see his needs...and so far they are all for more. But I think that has more to do with how good of a 'role model' he can be...

I think this is where the opposition comes from when I asked for the reg-ed class next year. I'm going to trust what the whole crew comes up with though. If they recommend, after his HORRENDOUS screening behavior, that he go co-taught, I might not push back. But I can't help thinking that we have from now until September to make more progress, so not sure what I'll do...I'll likely post here before doing anything anyway!


Audrey's whaling, hope that made sense and didn't ramble too much.

[MitsyG]

Way to go Kristen!!! You did it. Your son has RECOVERED. Coley is a testament to everyone that it can be done! Sorry, but on a good day, something is still gonna show up, if you are on the Spectrum. There are many ways to recover, the problem is finding what will work for your child, and getting help early enough. What does recovered mean? For example: if you have been hit by a truck, you can "recover", but you will never be exactly the same, like before you were hit by the bus, so boo-boo's will still be there.

Kristen- Coley will probably be able to be mainstreamed, and then "resource" him out for whatever he may need, like speech therapy, or whatever. That is what they do for Jonathan.

Like I said before to you, CONGRATS, and keep up the good work!!!!!!!

[Kristen (ColeysMom)]

I agree Mitsy...I mean we've had good days bad days, good periods, bad periods, etc. But when even on a good day he meets none of the criteria, that's gotta say something, LOUDLY!

YEP! I know it's just a paper and we still have all the issues that bugged me a week ago, I'm not saying they are miraculously gone...I know they are not. I know we've got lots still to do...but I'm just really happy that with a clinical evaluation he falls 'short' on the criteria...that means we're getting somewhere, and somewhere substantial! I REALLY needed to know that!

I see it mostly as a progress marker, clearly a BIG one, but I don't at all feel like I can stop thinking about autism or any of the things I worried about last week. Because I KNOW that if I just change his diet and leave it there long enough an evaluation will show something different!

Why that is, bugs me A LOT! If we only had a better handle on why ASDs present the way they do, then I could move on, perhaps...I think I'm coming to the realization that I do need to see a mito specialist.

A lot of the mito kids with fructose issues that I know also have learning and behavioral issues, I don't know for sure, because those moms are MUCH more sensative about these things, but I think Coley is the only one with a formal Dx but he is NOT the only one to get the same services. Many of them are home schooled.

Not that any of that amounts to a hill of beans when it comes to Coley...but I have a feeling that this mito thing is a lot more significant than we think. AND I think it may just be the 'thing' that makes all these diets make sense, AND sets the kids apart, regressive versus classical.

There is one moment that springs up in my head OFTEN when I think about all this stuff...the moment that I refused to give Coley a second round of antibiotics. As a preemie he was born with an underdeveloped immune system, and he got extra vaccines because of that...but after witnessing his reaction to antibiotics for an ear infection I couldn't allow more when the infection did not resolve. I sat BAWLING in the peds office and he thought I was a complete basket case...but I KNEW that drug f'd him up...no it wasn't an allergic reaction...but we ended up in the ER because he wouldn't eat or drink...but I was terrified of that infection...I don't know what it is about these 'drugs' but it's something that just doesn't sit right. And that is a consistent thing with these mito kids. And I'm terrified to give him any more vaccines, but I have to if he is to be enrolled...the only alternative is homeschooling...I just don't think I'm capable.

But at the same time I feel like if he gets this DTaP we may just be back on the spectrum again. Does he NEED to have this one? Or is it like the MMR that if he has the titers we can skip it? No I don't feellike I'm out of the woods by any means...just feel like everything we are doing is good for his well being and state of mind...that's a lot in my book! I just want him to be able to learn & grow, maybe it's harder, maybe he gets less 'treats' but at least he can function with his peers, right?

I think I'm going around and around...my mind has been all over the map lately, being sick doesn't help. Hopefully all that seems relavent to the subject.

[peglem]

Here in AZ, we can do a philosophical exemption to vaccines, with the proviso that if there is an outbreak of a disease not vaccinated for, the child has to stay out of school. So, when was the last time you heard of a diptheria, tetanus, or pertusis outbreak in an elementary school? At any rate, when Allie was six and I was refusing the next round of vaccines, the doctor was trying to talk me into it(not the one she has now). He finally ended by saying that she probably already has immunity to diptheria and tetanus (or they weren't high on his list of concerns) and pertusis is only dangerous for infants. Insurance would not cover a titer check. He said the only vax he would urge me to reconsider is polio (which they swore had no thimerosol) because of how really devastating it could be. I did consent to another polio vax. But, I do think you can have titers checked...if the doc will order it for you.

Okay, now double WOWEEs, because of Coley's progress and he will still get what he needs. When I was teaching, I saw children exited from services who really had a lot of trouble when the support was gone- that's why I was concerned.

[Kristen (ColeysMom)]

I know Pegs, and I thank you for speaking up...I've read some scary things here and on the preemie baords about services, but I can honestly say that SO FAR we have been blessed with the services and attention he's gotten...now I don't want to make that seem like my town is perfect, because I think they are not...I've heard some bad stories too...but so far we have done well. I am glad, but also fear that that is because he makes good progress with their efforts. Which make me sad for those that do not...afterall they are the ones that need EXTRA effort...

I know just from my humdrum work in insurance that without results, motivation faulters...I think with harder cases, families might not give my town such nice remarks...I think all that WE do at home, plus what they do has made the difference...by themselves, I don't think they would. So I know we are lucky in a lot of ways!

And my heart tells me that if Coley didn't have the motivation...none of our efforts would do squawt! I KNOW in the grand scheme of things it really is ALL about him! And REALLY why I'm so proud!

[RathyKay]

And I'm terrified to give him any more vaccines, but I have to if he is to be enrolled...the only alternative is homeschooling...I just don't think I'm capable.
I can't remember, are you in Massachussetts? Anyway, state exemptions: http://www.909shot.com/state-site/state-exemptions.htm. A while back, I read a sample letter on religious exemptions... something along the lines of the Bible says Thou Shalt Not Kill. There is a risk of death with the vaccines. Therefore it is against my beliefs to vaccinate. Anyway, it's something I could actually work with, although California has the Philosophy exemption, so I don't need to worry about it. If you like, I can search and see if I can find it. It might actually be on that website, if you do some searching.

Congrats on the un-diagnosis! We seem to be doing okay on the services. I kind of think that Tom falls in a certain zone(?). Bad enough, that he definitely needs services (no arguments). But, not too bad. Because some of the bad off kids seem to be getting services cut.... almost like they think there is no hope for them, so why bother with the services.

[Isabelle]

that's great news!!! follow the mito trail may show something more specific to tackle. yes, until sort out his problems refuse vaccines using whatever reasons.