where to turn

iVillage Member
Registered: 09-28-2003
where to turn
10
Fri, 03-10-2006 - 6:33pm

Hello, I'm new here.
I think that all of the people who are supposed to be helping us are not doing their job. I have 3 children: dd : ADHD -10 yrs. old, ds: ADHD - 8 yrs. old and ds: almost 5 yrs. old. My youngest was sick the first 2 yrs. of his life: asthma, allergies, sucking problems, severe case of chicken pox at 4 mo. old, had RSV and earaches everytime he cut a tooth. He was 4 weeks premature. At his 3 year check up, I expressed my concerns about his delays, lack of speech and peculiarities: food choices, sensory issues: OT and PT delays and so on. I was told he was a little behind due to being so sick the first 2 years. In the meantime of his 0-2 yrs., my other children were being diagnosed with ADHD. So, you can imagine my household. I finally had him evaluated at 3 1/2 by a Developmental Pediatrician, hearing (at the time, it was rare that he would answer us) and eyes checked (squinted all the time at lights and in the sun). We also were in the process for the IU: that was a horrible experience with the Dev. Eval. done by a woman 9 mo. pregnant, was mean to my son and had no patience. Plus, he was sick at the time, but she wanted to get it done before her maternity leave. It was horrible, then they lost his file: total nightmare. With the Dev. Pediatrician specialist, she mentioned the Autism Spectrum and I thought that the idea was absurd. I have a nephew who is autistic and there was no way my son met that criteria. I've had to reschedule 2x due to her schedule for his update check up. (He doesn't go back until June.) We switched counties in Sept. and he has finally started speech now: not by an EI therapist, but a elem. school therapists because they couldn't squeeze my son in their schedules. I also had a private company evaluate him for therapy and they simply went by the IU's recommecdations for speech and OT. We have stopped with the private agency. I have tried other alternatives with him, but I don't feel that anyone is on the right page and I don't know where to turn. Our pediatrician is horrible: a Speech Therapist pointed out that my son's fraenulum was too short and then the pediatrician snipped it in the office. It shouldn't have been overlooked when he was an infant, but they didn't want to discuss it. There isn't much difference in his speech since that was done last May. Anyway, where do I turn to have him tested for a form of Autism? My apologies for rambling away. Thank you for listening. He is such a sweetheart of a child, but he definitely is not like other 4 year old boys. Thanks again.

Diane

iVillage Member
Registered: 02-20-2001
In reply to: diane862
Fri, 03-10-2006 - 7:07pm
Where in Pa do you live??

 


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iVillage Member
Registered: 08-26-2005
In reply to: diane862
Fri, 03-10-2006 - 10:38pm
Diane,
I also live in PA(Lehigh County) but we are planning on moving soon to Delaware county in the next couple of months. I had my son seen at CHOP and at Geisenger. Chop are very good but as far as I know they are only taking kids 3 and under now but I'm not totally sure about that, it was just something I heard recently.Where in PA are you?
Teresa
iVillage Member
Registered: 09-28-2003
In reply to: diane862
Sat, 03-11-2006 - 7:47am

Good morning

Along with everything that has been going on with my children's health, my husband has diagnosed and undiagnosed issues and likes to move. In the last 3 years, he has moved us 4 times. So, Danny, my youngest, was evaluated at Chester County IU; the process went from January thru June. We transferred his records to Delaware County IU who is trying to be helpful, but I asked for a new IEP in Oct. Also, there is a problem now with funding from the state for next year and 5 counties in southeastern PA are being affected by it in the EI division. Some people have great experiences with the IU, I think that it depends on your needs. CCIU has a great set up in the building on Boot Road, but the evaluation was horrible and it went down hill from there. I took him to Theraplay from April through June, August through February and have stopped. The West Chester office has plenty of help but the Drexel Hill office is not fully staffed for speech and there was no change in his speech. We were throwing our money out the window. Danny's OT was coming along there, but they were telling me that he needed to come 2X for OT and 3-4 for ST, plus he has OT through the IU 1X a week and now has speech 2 X a week. Dnny had no time to play to develop other skills that he needs. He learned in the fall to ride a tricycle; he was past 4 years old, but he learned. I have started working with him at home and he is very receptive to "playing" with mom. He is about 2 years behind social/emotionally. He goes to a regular preschool 2 mornings a week with an itenerant visiting one of those mornings. He does very well there, but he is definitely behind in a lot of areas.

The Developmental Pediatrician was at Dupont and she said to try Theraplay and see what the IU does and we would check back in the fall. When the fall came, we had to cancel due to sickness and then couldn't get another appointment until now. They cancelled the appointment for now and I couldn't get an appointment until June. She had asked me if I had considered the possiblities of the Autism Spectrum and she left it at that. An OT teacher had mentioned it like that too last spring for the CCIU and nothing ever came of it. I've asked the teachers at Theraplay and they said they didn't think so. I mentioned it at DCIU and of course, I'm still waiting for the new IEP. He will not be going to kindergarten next year. He is registered for a 5 day preschool which I may change him to a 3 day, so that we can get the therapy he needs. I just keep thinking that something was looked over or missed. I don't think that he was evaluated right and we are running out of time. He is such a smart boy, but can't get comprehend important health related concepts.

Oh, we even tried the IU preschool for about a month. He was not in the right classroom. He came home and had temper tantrums, started having night terrors and cried every day when he went. I was told by his OT who saw him in the halls there that his personality was drastically different. I was really not impressed by the teacher when we observed but that was the only time slot open that fit our schedule. I didn't like the way that she handled the children or 1 of her aides. She had no patience. His last day there before the holidays: he needed 2 seconds to finish his coloring page. They wouldn't let him and he had a melt down: crying, laying on the floor for more than a 1/2 hour. Nobody ever had this problem with him before this. He went back to get him and he was laying on the floor in the hall crying histerically. That night he had an asthma attack and never went back. I was a teacher myself and that scene could have been totally avoided. If you are working with special needs children, then you should be patient and understanding and I didn't see that in that room. Also, it was before the holidays, all kids are on edge. The room he would have probably had success in was only open 2 mornings and that was when he went to other preschool. I didn't remove him from that setting because it was consistent and he was happy there. Every once in awhile, he'll bring up the "other school" and tell me how sad he was there. It breaks your heart because at that time he couldn't voice his feelings; now they are spontaneous and seldom, but suddenly they come out.

So, is it a Pediatric Neurologist the way to go for an evaluation? If so, I have to find a different one than the one that my other 2 kids went to with Dupont because he was horrible. Is there anywhere to go for private testing that won't cost an extreme amount of money?

I'm sorry for going on and on: it has been chaotic and I've tried to find the answers and the systems are working against us, so it seems.

Thank you for listening.

Thanks, Teresa and Tina for responding.

Diane

iVillage Member
Registered: 10-03-2004
In reply to: diane862
Sat, 03-11-2006 - 8:59am

Dear Diane,

A neuropsychologist with experience in dx'ing ASD kids is the way to go, also sometimes a good developmental pediatrican. Neurologists are a mixed bag with dx'ing spectrum anyways, I have heard good and bad reports of going that route, so I would look for a neuropsychologist. They are indeed expensive for a thorough evaluation, I have heard of some people's insurance covering, ours did if we went in network but we wanted to go to the best in field, who of course weren't. However, we were able to deduct on taxes, also for self-pay therapies, etc. The money we paid was well worth it, as the evaluation report was so chock full of information. In fact, we have actually had our (now 8, PDD-NOS) son evaluated 2 xs by school district, 2 xs by private neuropsych, all useful and helpful reports (although school districts not as much...)

The kinds of difficulties you describe your child having do sound like he could be on the spectrum, of course it is impossible to dx over internet, also NOONE except a real specialist should make that call, certainly not therapists! There are sure alot of people out there who should be careful about their opinions when they are not qualified to dx, I have heard WAY too many stories of parents being told their children couldn't be spectrum only to find out years later that they are.

It does sound like your child has been getting good therapeutic intervention already. And also like you are a very involved and loving parent and will keep looking for answers and figuring out how to help him, removing him from situations that don't work and fighting hard for appropriate services and assistance. He is a lucky kid!!!

I want to welcome you here, this is a GOOD place to ramble and worry and ask for advice. And yes, fighting "the system" is one of the exhausting realities of our world! Stick around, let us know how things are doing!!

yours,

Sara
ilovemalcolm

iVillage Member
Registered: 02-20-2001
In reply to: diane862
Sat, 03-11-2006 - 4:42pm

Which neurologist have you dealt with at DuPont?

 


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iVillage Member
Registered: 02-20-2001
In reply to: diane862
Sat, 03-11-2006 - 4:54pm

I found it!

 


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iVillage Member
Registered: 09-28-2003
In reply to: diane862
Sat, 03-11-2006 - 7:54pm

Hi Tina,

Thank you. The doctor I took my older 2 children was Dr. Steven Falchek based out of Dupont and Bryn Mawr. Basically, we went in, he glanced at the questionnaire, talked to us for a few minutes, prescribed medicines and told me that the pediatrician could handle it and we didn't need to return. My older children go to a Dr. Oliver Yost at Dupont for their meds and updates about every 6 weeks. He is a pediatric psychiatrist and is fantastic. He actually had recommended that they both attend the social group in Newtown Square, but I misplaced the information. I was going to go to the classes in West Chester at Theraplay. Danny was going to do the one at Theraplay in DH. But it isn't cheap. I loved the Theraplay in West Chester. Danny loved it too. We were glad that one of the OT teachers was in Drexel Hill once a week so there was consistency for him. WC Theraplay is the one who noticed his fraenulum was too short. The problem I found with Theraplay was that he wasn't making progress because they kept losing their Speech Therapists. Also, I didn't like one of them and she is also at WC. I wonder if it is the same person. Frances is fantastic out there! Also, the cost was playing a part because the results weren't there. He wasn't happy about going because that is all he was doing was therapy and school. If I don't see progress with getting him re-evaluated somewhere else, evaluated by an ent and with the speech at the IU now, then I may return to WC. Sometimes, I think that Danny would have been better off at the special needs preschool in CC, but we had to move back to Del. Co. unfortunately (and fortunately for other reasons.)

I will look into the doctor. I hope he takes some insurance. The specialist that my other kids go to just started to take our insurance. Yahoo!

I came across information about Bryn Mawr Child Study Institute. Have you ever heard of it? I went to a meeting for the IU this week. One of the women there mentioned that they do extensive studies, so I looked it up on the internet. I have a feeling that it will be costly.

It is so nice to talk with others who have and are going through the same struggles with people who are supposed to be there to help us help our children and to help us find the answers and the help that they need.

Thank you so much.

Diane

iVillage Member
Registered: 02-20-2001
In reply to: diane862
Sat, 03-11-2006 - 8:27pm

Diane,


Here is the link for Collage who runs the playgroups

 


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iVillage Member
Registered: 09-28-2003
In reply to: diane862
Sat, 03-11-2006 - 9:31pm

Yes, Tina, it is a roller coaster ride. I feel like it has been that way with each of my kids for the last 5 years. Danny will be 5 in May. I remember Margot; she seemed good. I think that she started there as we were leaving. Danny was evaluated by CCIU last year: it took six months from beginning to end. When our house sold in Aug. and we decided to return to DC, they sent records to DCIU. I had a meeting with them in Sept., but they really hadn't had time to review his IEP. So, they followed up with part of CCIU's recommendation; he has OT 1X and speech 2X (which finally started about 2 weeks ago with an elem. IU therapist) and he has an itenerant teacher visit him one day at preschool. We are in the process of re-evaluating him.

We just stopped Theraplay last week. Konkani is the one that is at DH and WC. But she will be mainly at WC from now on. She wasn't really consistent with Danny, but that is my opinion. It may have been because she was only there temporarily and they may be frustrated with the lack of advancement of Danny. They lost 2 therapists within a couple of weeks. Is Jenn the one with brown hair and she is from Maryland or somewhere around there? Does Bobby go there for anything else?

So, what do they do at Collage? That is the group that the psychiatrist recommended. Yes, that is more money than Theraplay but if it helps, then that is what counts. Our insurance covered most of Theraplay, we only had a copay, but it adds up.

I see you have a daughter in the pictures. How old is she? Does Bobby go to the CCIU preschool or a different one?

Thank you again.

Diane

iVillage Member
Registered: 02-20-2001
In reply to: diane862
Sun, 03-12-2006 - 3:14pm

Diane,


Bobby goes to the CCIU's autism support preschool in Coatesville, however we are going to be moving him next month to one of their developmentally delayed preschool classes in Chadds Ford.

 


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