G's appointments

[Cecelia712]

We have been to so many drs appointments lately I can barely keep track of them. But all his CPSE evals are done, as well as the neurologist. So, the cpse psychologist said he does not qualify as pdd-nos. She also said she would not put him on the autistic spectrum at all. She feels all his issues are directly related to his very limited speech. The speech evaluator thinks he should be getting speech every day. it was also said to continue the ABA therapy for now because since cpse does not agree with the pdd_nos diagnosis that will be stopping anyway. They said that therapy won't really help him because he can do the tasks he's told to do, but that it can't hurt. So he gets that 2 hours a day for 2 days. EI wanted to do 5 days but I said no because that's 930-1130. Then we have to have a quick lunch and leave to get him to the school program. That's a very busy day for a child who isn't even 3 yet.
As for the neurologist, well he needs an mri and eeg. She thinks given his history of the left side paralysis and my family history that chances are he suffered a stroke while I was pregnant with him. She feels his symptoms of that along with the severe speech delay and some other factors that's the cause of his issues. I need to make him an appt with an audiologist as well. I just feel so bad for him. So many appointments and so much therapy. And he needs to be sedated for the mri and eeg and I hate that thought. I just want to know what's wrong and how to fix it. I want him to speak. He wasn't very cooperative today and the dr asked if this is his normal behavior and I. Said yes, so then she asked if always so whiney, because he was and is VERY whiney. I guess its good he was his normal little bratty self so she could see how things affect him but still, as moms we hate to be told our kids are bad or flawed in any way.
Just so much more to do to get answers, for now just getting more questions!

[Mom2jngnc]

Johnny had to have a dye contrast ct when he was 2. My boys all have one pupil that is smaller than the other, and that same side eye lid sits lower. The pediatrician wanted it done "sleep deprived", that didn't work. Ended up going back in two weeks for him to be knocked out. 

back to teh point. With this happy little eye my guys all have, Johnny was the most noticeable. After seeing an eye Dr at 4, and a few more questions asked, we found out that he has "Horner's Syndrome", the sympatetic nerve to the eye is pinched or severed. Also with that Johnny, had some paralysis (sp) with that side of his body as a baby. Didn't kick out or move that arm/leg as much as the other..... 

So there is a variety of things it could be, I guess is what I am gettign at.

[Cecelia712]

I've been told several different explanations for giovannis paralysis, and even if it was a stroke, well he's still here and doing very well except for the speech. So not like I'm freaking out if that is what happened as long as it doesn't mean there can be further complications or a greater chance of him having it again.
He will be sedated for all his tests so we will have all of them done one after the other. I'm not thrilled with him being sedated but I know there's no way he could do an mri and mra without it.
I know it can be from a variety of things and hopefully these tests will tell us for sure what it is, and that it is correctable.

Quoting Mom2jngnc:

Johnny had to have a dye contrast ct when he was 2. My boys all have one pupil that is smaller than the other, and that same side eye lid sits lower. The pediatrician wanted it done "sleep deprived", that didn't work. Ended up going back in two weeks for him to be knocked out. 

back to teh point. With this happy little eye my guys all have, Johnny was the most noticeable. After seeing an eye Dr at 4, and a few more questions asked, we found out that he has "Horner's Syndrome", the sympatetic nerve to the eye is pinched or severed. Also with that Johnny, had some paralysis (sp) with that side of his body as a baby. Didn't kick out or move that arm/leg as much as the other..... 

So there is a variety of things it could be, I guess is what I am gettign at.

[Cecelia712]

Also, I'm surprised it took that long to get a diagnosis of horners as he presents with the classic symtoms of it. I worked as an ophthalmic eye tech for 15 years so have seen it quite a bit. Normally when it comes to anything regarding the eyes the pediatricians refer you to the eye dr right away rather than trying to diagnos it on their own.

Quoting Mom2jngnc:

Johnny had to have a dye contrast ct when he was 2. My boys all have one pupil that is smaller than the other, and that same side eye lid sits lower. The pediatrician wanted it done "sleep deprived", that didn't work. Ended up going back in two weeks for him to be knocked out. 

back to teh point. With this happy little eye my guys all have, Johnny was the most noticeable. After seeing an eye Dr at 4, and a few more questions asked, we found out that he has "Horner's Syndrome", the sympatetic nerve to the eye is pinched or severed. Also with that Johnny, had some paralysis (sp) with that side of his body as a baby. Didn't kick out or move that arm/leg as much as the other..... 

So there is a variety of things it could be, I guess is what I am gettign at.

[Bethy16]

My almost 8yr old son did not speak a word until he was over 3 and then he started with what we called "Jordan-ese" his own made up language. He also had to have an MRI at 3 sedated and numerous cat scans. Like I said he is almost 8 and we cant get him to SHUT UP! Lol he is extremely bright and in school is considered an advanced learner. You are doing everything you can and have him in all of the correct therapiies. The speech will come and you will see most of his behaviors will go away. Oh and we also did the hearing tests,when he was young he had nothing wrong with his hearing at all. He actually developed a benign tumor in his ear that left him deaf in his left ear. It still doesnt stop him! He is very much into martial arts,he is on a swim team,plays every sport he can and is very good at everything he does. This isnt a brag post just want to show you there is a light at the end of the tunnel. Good luck!

[SamMom912]

Well i agree with bethy that there is a light at the end of the tunnel... But i also k
Now you are proactive and will do whatever he needs as far as therapies go. If you get test results and aba and speech and all the other therapies are still recommended..then i know you' ll go/do for G cause that is what he needs... And the earlier the therapies start.. The better off he will be.
I get told all the time how GREAT Sam is... (you know, just comparatively) to kids who didnt get as much therapy...
Our schedule used to be crazy... With pt 2x45, o/t 2x45, speech, sensory intergration..all that after preschool in the am..the occassional playdate, swim lesson, karate, and lets not forget all the babysitting i used to do for those user friends i had!

[Mom2jngnc]

It is one of the many reasons I fired his pedi. 

Quoting Cecelia712:

Also, I'm surprised it took that long to get a diagnosis of horners as he presents with the classic symtoms of it. I worked as an ophthalmic eye tech for 15 years so have seen it quite a bit. Normally when it comes to anything regarding the eyes the pediatricians refer you to the eye dr right away rather than trying to diagnos it on their own.

Quoting Mom2jngnc:

Johnny had to have a dye contrast ct when he was 2. My boys all have one pupil that is smaller than the other, and that same side eye lid sits lower. The pediatrician wanted it done "sleep deprived", that didn't work. Ended up going back in two weeks for him to be knocked out. 

back to teh point. With this happy little eye my guys all have, Johnny was the most noticeable. After seeing an eye Dr at 4, and a few more questions asked, we found out that he has "Horner's Syndrome", the sympatetic nerve to the eye is pinched or severed. Also with that Johnny, had some paralysis (sp) with that side of his body as a baby. Didn't kick out or move that arm/leg as much as the other..... 

So there is a variety of things it could be, I guess is what I am gettign at.