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Old 07-29-2006, 10:26 PM   #21
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Re: Vax and my baby

I live in Northern CA and a few months ago found this awesome group for CA families only
http://health.groups.yahoo.com/group..._Dyspraxia_CA/

Many of the families there are in So. CA and are so extremely helpful. My child possibly has apraxia too, actually in his case he was already recieving therapy for months and then I read about apraxia and thought some of it sounded like him but by then it was kinda too late for a diagnosis....meaning if you have apraxia and are recieivng treatment it starts to look like another speech disorder called Severe Phonological Disorder. So right now he has Severe Phono Disorder w/apraxia contigionies

As far as shots go, CA is very flexable if you don't want to do anymore for your child you don't have too...and if you want to delay them for your other child you can. You'll just have to search around to make sure the ped agrees with you. I've never been to a DAN doctor but I have considered it. Definately join the apraxia group you'll get alot of support there!!!

Oh alot of apraxic kids use ASL (american Sign Language) to communicate or if the apraxia is effecting your child's hand where he has motor issues the PECS system might be an option. Feel free to email me more if you have any more questions.
this is a great refference site too:
http://www.apraxia-kids.org/

Oh you mentioned speech therapy is not helping...maybe it's the type of therapy that your child needs?? One friend of mine her child does the PROMPT therapy....I don't know a whole lot about it but alot of apraxic kids really respond well to it
http://www.apraxia-kids.org/site/c.c....asp?ct=464155

My child does best with drills and cued speech and ofcorse he used to use ASL but has dropped his signs for words .....please email me...I'll keep adding info if I can...LOL

Janel

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Old 07-29-2006, 10:33 PM   #22
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Re: Vax and my baby

Quote:
Originally Posted by janelyb
I live in Northern CA and a few months ago found this awesome group for CA families only
http://health.groups.yahoo.com/group..._Dyspraxia_CA/

Many of the families there are in So. CA and are so extremely helpful. My child possibly has apraxia too, actually in his case he was already recieving therapy for months and then I read about apraxia and thought some of it sounded like him but by then it was kinda too late for a diagnosis....meaning if you have apraxia and are recieivng treatment it starts to look like another speech disorder called Severe Phonological Disorder. So right now he has Severe Phono Disorder w/apraxia contigionies

As far as shots go, CA is very flexable if you don't want to do anymore for your child you don't have too...and if you want to delay them for your other child you can. You'll just have to search around to make sure the ped agrees with you. I've never been to a DAN doctor but I have considered it. Definately join the apraxia group you'll get alot of support there!!!

Oh alot of apraxic kids use ASL (american Sign Language) to communicate or if the apraxia is effecting your child's hand where he has motor issues the PECS system might be an option. Feel free to email me more if you have any more questions.
this is a great refference site too:
http://www.apraxia-kids.org/

Janel
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Old 07-29-2006, 10:36 PM   #23
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Re: Vax and my baby

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Originally Posted by aimeemarie
But is the attitude people bring necessary?
Yep, it is necessary for people whose children do not have a life sentence, basically, to see that pooh-poohing it to people whose children DO have a life sentence to see how callous they are being.

In my opinion.

Yup. Totally necessary.

It always shocks me how cold people with "normal" children can be about trying to put the rest of us in our place. (BTW, ADHD is treatable with one little pill. Not all parents want to do that...but it is there. It exists. There IS no pill for autism. And yes, I do know whereof I speak...my former stepson had ADHD.)
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Old 07-29-2006, 10:39 PM   #24
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Re: Vax and my baby

Don't give up on therapy!!!! I know it is so hard trecking from one therapy to the next and with a newborn but hang in there!!!! Does your lil guy have OT and PT too???

Oh I added more to my other thread too hehehe
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Old 07-29-2006, 10:44 PM   #25
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Re: Vax and my baby

OH! Also (this is to Janel), I do think the most recent therapist was using PROMPT. She would put her hands in different places...like a thumb under the jaw, or hands on his back pressing in, or her hands on his lips. Unfortunately, that therapist only started two weeks ago...and just ended. We only had her for two weeks! She was a "fill in".

I have begged other speech therapists to at least entertain the idea of apraxia. I got laughed at (professionals seem to have this wonderful way of laughing at me :lol: ) for a year and a half...until suddenly this month it became THEIR idea. Now, "Guess what. It's apraxia!"

No sh*t. Really?

(He also has cognitive delays, BTW, but apraxia is one of his conditions as far as "they" can now tell. Surprise.)

So...anyway, I was so excited by this PROMPT thing that I have been doing it with Colin at home. He still only makes one sound in response, "buh" (no matter what the word is I'm trying to help him say), but at least he's trying and it's a ray of hope. I will cling to any hope at all at this point, you know? I just want my son to grow up happy. I wonder what will happen when we die and nobody is around to take care of him...nobody can really understand this unless they have been through it.

I really appreciate those who responded to my actual question...this is great advice.
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Old 07-29-2006, 10:46 PM   #26
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Re: Vax and my baby

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Originally Posted by janelyb
Don't give up on therapy!!!! I know it is so hard trecking from one therapy to the next and with a newborn but hang in there!!!! Does your lil guy have OT and PT too???

Oh I added more to my other thread too hehehe
Sorry to serial post. I'm about done soon, LOL. It's just that I only now got the kids into bed and I wanted to follow up. Anyway...no PT, since he's not severely under on gross motor. Just OT, because fine motor is his issue pretty much.

He will no longer have OT after this summer unless I fight for it, according to the school system. So...his current OT is writing up a recommendation that it continue.
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Old 07-29-2006, 11:00 PM   #27
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Re: Vax and my baby

Soft bum baby, I wanted to give you a big (((HUG))) You could be describing my life with my oldest who will turn 5 on the 4th. It has been difficult to say the least. From one appt to another always trying to find something that just might turn the tides back in his favor. Therapy has done nothing for him (well that's not entirely true, the OT helped with his SPD which is totally unrelated any way ). He has been in speech for 3 yrs, but it has been the work that dh and I do with him every day that has truly helped. The only difference is that Kearnan developed totally normaly until his last vaxes. Within a matter of days my precocious talker couldn't speak at all. He just screamed. I know it was the vaccines that did it, not a single doubt in my mind. We finally qualified for SSI and he will be going to a DAN! DR soon to start treatments which will most likely include chelation. But the most iritating thing to me is that no one will admit the vaxes caused this, and even if he improves with the chelation they still won't admit it. And he was vaccinated for bogus things, just like your ds. Prevnar was invented to prevent ear infections, even my current Pedi admitted it. Is it worth our children becoming Autistic to possibly prevent ear infections?!?!?!?! But the second a vax comes out for somethign it is suddenly a huge killer. Like Chicken pox which was jsut a comon annoyance when I was a child. Now it is a death sentence that you are a horrible parent if you don't protect your child from. I was reading a mainstream magazine the other day and some one had written in worried about Hand Foot and Mouth disease. The Dr expert told the mother not to worry, that it was annoying, but not too serious. Dh and I had to laugh because we knew that if next year there was suddenly a vax for Hand foot and mouth disease it would become this great feared killer and this same "expert" would be telling parents how dangerous it was and to run out and get the vax. They may even put out more of those horrid comercials with the crying rubber duckies. Rotavirus practically dropped off of everyones radar when they had to yank the vax because it was killing children. I never heard a single thing about it when ds was born. Now Merk wants to bring Rotoshield back (new and improved of course, look far fewer cases of deadly intesesepetion) and suddenly they are starting talking about rotovirus again, and how deadly this diseas is and how many kids will get it. If it is true that every child has it by the time they hit 5, then Kearnan has had it, and he hasn't had anything I would call horrible or deadly. Maybe mildly annoying, but the only viral stomach illness he had was far less severe than the stomach upset that those darn Guacamole Dorritos dh gave him caused. He was sick for a week with those (dh was in a ton of trouble for it too).

Sorry looks like I got off on my own rant there. But I wanted you to know that you aren't alone. There are others of us out here dealing with Vax damaged children. Kearnan is labeled with PDD NOS because of vaccines. And there are things that you can do. Look into the autism research institute and the defeat autism now DRs. I can't tell you what to do about therapy. Despite the fact that it has done nothing for him, Kearnan is still going. But every time the school district tells me how great the program they are offering him is I remind them that they haven't really helped him at all. Funny how they like to forget that part.
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Old 07-29-2006, 11:09 PM   #28
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Re: Vax and my baby

Quote:
Originally Posted by SoftBumBaby
Sorry to serial post. I'm about done soon, LOL. It's just that I only now got the kids into bed and I wanted to follow up. Anyway...no PT, since he's not severely under on gross motor. Just OT, because fine motor is his issue pretty much.

He will no longer have OT after this summer unless I fight for it, according to the school system. So...his current OT is writing up a recommendation that it continue.

Pm'd you!!! Yes fight for OT!!! Fine motor is definately an issue that an OT needs to address(don't let the school district try to tell you otherwise)....please consider the yahoogroup I mentioned.....

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Old 07-30-2006, 12:05 AM   #29
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Re: Vax and my baby

Either way you can't win, imo.

On one hand, you vax and possibly save your child from suffering, or possibly dying from many diseases.

On the other, you vax and your child ends up with Autism and the like.

I, personally, don't really believe that vaxes completely cause issues in children. My thought is that some children may be prone to certain conditions, and then the vaxes could possibly set them off. But who really knows.

I'm struggling with this right now. I don't want to vax. I don't really know why I don't. More I guess because it makes him cry than anything else. But we are out in public ALL the time and live on a college campus. So, deep down I feel that I should vax him since he's exposed to so many people each day. He's due up for his 4 month shots and I have no idea if I'm going to get them yet.

ETA: I do know that while Chicken Pox was fairly easy for me, and is for most children. There ARE at least 100 children a year that die from it. A woman on another board just told us about her daughter's school, it had an outbreak and while most of the children were fine after their week or two with it, one little girl is now in a wheel chair and cannot talk. They don't know if she'll ever be able to fully recover. Like I said above, it's just a no win situation either way.
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Old 07-30-2006, 04:32 AM   #30
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Re: Vax and my baby

I have also heard alot about using a gluten free diet and having good results.
http://www.amazon.com/exec/obidos/AS.../chrisficti-20
I have heard good things about this book.
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