New to EI- help???

Hi all

I'm new to this forum- always was posting in FHF or Parenting. But now my son is receiving services through early intervention for speech delay and special ed. Its very early in the process and I am totally confused, terrified and uneducated about all this.

He is 18 months and not answering to his name, no speech, poor cognitive skills, etc. Awesome social skills, eye contact, interaction, all that. The report said possible autism, definite speech delay, definite cognitive delay. He fell in the below 1 percent of everything.

So I have services coming 6 days a week. Can ANYONE give me any guidance? Someone told me to take him to Dr. Palevsky, the pediatric neurologist, for testing and such, but after calling his office they 1) can't make any appoinments as they are booked through Auguest and can't book for September yet 2) more importantly, are $500 a visit. I got a list of pediatric neurologists from Empire.

Should I be taking him to a pediatric neurologist? A holistic pediatric specialist? A Pediatric Chiropractic Neurolist? Or an Integrative neurologist?

I'm totally confused, but I want to be proactive. And a friend had similar problems with her son, and said taking him to a integrative pediatrician made all the difference in the world.

Any help? Thanks ladies!

Re: New to EI- help???

Personally I would wait another 6 months before bringing him to a doctor to confirm possible autism. I would see how he responds with 6 months of therapy and than have him re-evaluated with a child psychologist who can diagnose for autism. If they find him to be on the spectrum he will qualify for more services. I have a friend who is dealing with the exact situation as you, her dd is 18 months and receiving the exact therapy and also told her of possible autism they are giving her a short period of time before confirming with a child psychologist. E.I runs to age 3 and will then be picked up by your school district.

Re: New to EI- help???

Just want add I have a child with Pdd-nos and never took him to a neurologist. A child psychologist evaluated my son for 2 hours and determined he didn't meet the criteria for autism but what showing some signs of it that put him on the spectrum with a diagnosis of pddnos this was at 28 months. I wanted a second opinion with a developmental ped. That I had to wait 6 months for I agreed with the psychologist and got him the spectra services he needed right away. A year has passed and he is doing great! Good luck to you and for being proactive with you DS

Re: New to EI- help???

THANK YOU GIRLS SOOOO MCUH!! I cannot tell you how much I appreciate your advice! I feel like I walking blind here- I don't know ANYONE who is even in a remotely similar situation. So its just me googling and reading books and hammering the therapists with a zillion questions. Your words of wisdom are very appreciated!

Re: New to EI- help???

Posted by adeline27

Just want add I have a child with Pdd-nos and never took him to a neurologist. A child psychologist evaluated my son for 2 hours and determined he didn't meet the criteria for autism but what showing some signs of it that put him on the spectrum with a diagnosis of pddnos this was at 28 months. I wanted a second opinion with a developmental ped. That I had to wait 6 months for I agreed with the psychologist and got him the spectra services he needed right away. A year has passed and he is doing great! Good luck to you and for being proactive with you DS

Re: New to EI- help???

my daughter was DX with PDDNOS at 18 months. she too was not answering to her name. no words and poor expressive and receptive lanugage.

she was evaluated by a speech therapist and child psychologist. The child psychologist came back twice and DX with PDD NOS. she has been receiving ABA services since she was 19 months and what a difference. She was reevaluated at 2 years and we kept all the same services. also when the services started I asked for speech. Suffolk EI kept telling me that it isnt normally given during EI. well i asked and asked and asked and they gave it to me. ABA therapy is more like play therapy and very structured and rigid. Speech therapy was alot more informal and really helps with my daughters spontaneous language.
she is now 2 and a half and will be re-evaluated for her 30 months to see what she will qualify for again.

i never took her to a developmental pediatrician or neurologist. I just take her to her normal pediatrician.

Re: New to EI- help???

Aba therapist here. Feel free to FM me with any therapy related questions! I always tell the parents that the DX is just for the services at this age and the therapy really does wonders. Good luck!

Re: New to EI- help???

As a mom who waited to get a dx for my DD, I say go to the neurologist and get it. Especially if you feel that it is not what the first doc thinks. For my DD, dx required a blood test, that I put off b/c the doc told me "whatever the results are of this, it doesn't matter...the treatment is the same...therapy, which she is already getting". I took it as he didn't think getting the dx was important, when I think what he was really doing was trying to reassure me that it will be ok, cause I think he knew in his heart what the outcome was going to be. Had I gotten the dx earlier, more intensive therapy would have started earlier, and the therapists could have tailored her treatments more toward what she actually needed, maybe. Who knows? Anyway, I'd want to know.

Re: New to EI- help???

An update, @parmacat00 and others

I took him to a Developmental Specialist (StonyBrook, Dr. Cheung ) a pediatric neuroligist (a different unrelated Dr Cheong), an audiologist (Dr. Slavin) and a genetic counsnslor (Good Sam) I know, I went a little overboard but I wanted to rule out specific things (like hearing, for one, since he doesn't answer to his name or snf my husbdand and his four brothers had tubes put in their ear. Each and everyone of these doctors were amazing, all truly went above and beyond and were so patient, kind, two of them sat and spoke to me for nearly an hour. If anyone has any concerns about their child's development, I' try and get an appoointment with one/a fee of these doctors. Like I said, they were all wonderful and explained everything step by step.

To boot, Dr. Cheung (Stonybrook, developental sspecialist) was able to see me within 3 weeks- while the rest of them are scheduuling 6 months in advance. If anyone needs further info, let me know and I'll get you their info.

My great news is that EVERYTHING checked out and ALL 11 or 12 of tests came backl NORMALl- phew! I wanted to take him to go to all of them to do process of elimination and be sure that there wasn't something I was missing.

The genetic counselor tested for chromosnonal abnormalities using the microarray and a FragileX test. Lucky fro me, they both came back perfect.

If your insurance covers it, why not go?

One of them told me thaat if the county early intervention services do NOT cover a day program (a program out of the house) you can get your insurance to pick up the tab.

My nutritionist friend told me to get him an IGE test to check for milk or gluten allergy, that if they have an alergy, it might slow their development. (It doesn't determine an intolerance, the only way to do that ius through process of elimination by taking one away and seeing if he improves. But all of the doctors confirmed that children with delays or autism should be on a diet of organic and non-processed foods- I was doing that already. I know not everyone can afford organic, but for me, it gives me piece of mind. Its so not to have these boards and not feel so 'alone'.

BabyFever, you are too kind. I will be sending you a pm asap, thank you so so so very much-- I really need the help you specifically mentioned- ABA.Thanks girls for all your info.

Again, don't hesitate to contact me with any questions or for contact info for the doctors!

Thanks girls!