Need advice about drs. (for ASD)

[Adamsmama]

I'm super frustrated right now and don't know where to turn anymore. I'm sick of my child not getting good medical care because now at age 5 he still doesn't have a full diagnosis (just a maybe pdd-nos). He's had a ton of tests done and I've been running into dead ends just about every stage of this long process. Where do I turn next? I looked up autism speaks for our area and they have recommended GI drs. dev. ped and neuro ... but none in our area except for 1 dev. ped who has appr. 18 month wait! How can parents be expected to wait for so long for help--I need behavioral help and support NOW! I need to know what I'm dealing with and how to help him NOW! I'm so mad. I think our drs. in our area aren't trained to know and understand autism. I'm at the point where there isn't much doubt in my mind that he DOES have PDD-NOS and needs help with it ... but I can't find help IRL. He is globally delayed severely. He isn't potty trained, he speaks on a 2 yr old level now, he destroys toys and doesn't follow directions well. He has improved in certain areas (fine motor, sensory, speech) but very slowly (and not much improvement in gross motor). He has sleep issues. Does anyone have any suggestions for drs. PM me if you want to. I need a great GI dr. possibly in the Chapel Hill, NC area or in Atlanta or even in Maryland/Virgina or Washington, DC. I also need a great neurologist and dev. pediatrian. Do they all have waits this long? If so, that is absolutely absurd. Uggg... I feel so sick! :

Sorry this is so long.

[Jennifer Z]

Our wait for the devopmental ped was 14 months initially. I asked around, and found out she had a second office at one of the places ds has therapy and made an appointment on that calendar instead, which cut my wait to 12 months. Then I got on the 'call if you have a cancelation' list, and got a call within about 3 months.

I would go ahead and get on the calendar and cancellation list, and then look around to see if the dr. has other offices/appointment calendars. Here, there were a total of 3 offices locally, one at the hospital, one at the medical school, one at the therapy place that has a boarding school for DD kids. She also had other offices in other parts of the state, and I know that is sometimes how other people get in sooner, but we didn't have a car that could have made the drive. One dev. ped in a large geographical area really sucks.

[crl]

I don't know how long the wait is (we got in through connections) but we really like our developmental ped. He's with Kennedy-Krieger in Baltimore and his name is Dr. Bruce Shapiro.

In the meantime, why do you need the dx to get help? Is it for insurance? (Every insurance is different--I know we got some stuff covered when DS was about 2 before we had a dx, we just had Early Intervention saying he was delayed.) Because if you don't need it to get things paid for, you can go ahead and contact OTs, STs, play therapists, etc on your own.

Also, you may be able to access services through your public school district. You contact them directly and request an evaluation--put your request in writing and that starts a clock on them to do an evaluation to determine if your son is eligible for services. School districts provide things like ST, PT, and OT. They potty-trained my kiddo. This won't help with purely medical things, but it could help with other stuff. And if you don't want to put your kid in school, they may still provide the therapies. . . .

Hope this helps.

[Adamsmama]

Thanks for the advice/support. We have in the public schools here for preschool. He is doing well there and that is where he receives therapies. The problem is that I feel like I am going crazy--because I need some answers for me. He has diarrhea/mushy poo 4x a day on average -- I need to know why and if there is something we could do differently to help him. I want to to know why he is so delayed--if it is from a birth injury (possiblity) or if it from autism or if it is a genetic cause, etc. I need to know whether taking certain things out of his diet will help him get better--but I don't want to start testing it myself. (He is already lower weight for his age and a very picky eater, I'm afraid I'll buy all this food that is more expensive than regular food and then he won't eat it, etc.) I've been trying things out for 3 years now and I'm pretty exasperated at the moment with trying things that fail and I feel too fragile to go through this on my own. I guess I want a dr. to sit me down and tell me what is going on with DS and for the dr. to figure out a plan of action for him that we both feel comfortable with, etc. I want someone that shows interest in getting the best plan of action for him that is knowledgable in the subject.

[crl]

Ah, sorry I didn't understand very well. Baltimore is pretty far for you to go and I think you are looking for some continuity of care so maybe not the best plan for you. . . . On the other hand because Kennedy-Krieger is linked to John Hopkins I would think getting into one specialist there would hook you into whatever other specialists you might need. . . .

I hope you are able to find the help you need soon.

[Adamsmama]

Originally Posted by crl

Ah, sorry I didn't understand very well. Baltimore is pretty far for you to go and I think you are looking for some continuity of care so maybe not the best plan for you. . . . On the other hand because Kennedy-Krieger is linked to John Hopkins I would think getting into one specialist there would hook you into whatever other specialists you might need. . . .

I hope you are able to find the help you need soon.

Thanks for the info. We've got family in the Baltimore and DC area that is why I mentioned it. Thanks!

[heatherdeg]

We also go to Kennedy-Kreiger in Baltimore (we travel from NJ). We get an eval in the morning and see the dev. neuro (Dr. Zimmerman) in the afternoon--when he's been able to review the results. Because the neuro is an MD, he issues the diagnosis.

We've been going there for 3 years. Insurance has always covered it--they know how to work the dx codes so that the insurance companies will accept it (which is a problem when they're under 3yo). And they've been awesome with giving us helpful information and places to look for alternative therapies. I also found Dr. Zimmerman to be non-alarmist, but also sometimes uncomfortably on the cutting edge (although he doesn't push parents, just informs and educates, then lets us decide).

It's been worth the trip, but admittedly the trip is shorter for us than for you.