Information Needed on Early Intervention Program for Infant with Torticollis

Hi N.,

My daughter had a similar injury at birth and we use the early intervention program. I can't say anything bad about it. The therapists are great and I love that they come to your house. My suggestion is stay on them. It took a while to get started also for us but once it happened you work with the therapist only scheduling appointments. It takes a while because there are only so many therapists and they are all pretty busy(and wonderful)!! So just keep calling and they will know you mean business. We just moved so I don't know where my case workers number is, but if you would like me to search for it I will just let me know.

Good luck, and my little girls injury is not noticeable anymore!!!

One more thing, we used Children's Memorial Hospital Therapy Center until the EI therapists were located. They were great too and we went through our insurance for that.
L.

Hi, N.!

I live in Romeoville and my son (20 mos) is in EI right now. He was evaluated in April and did not get a therapist until July and that was for a feeding issue. He has since needed add on therapies and those too have taken a couple of months. My coordinator told me the Joliet, Romeoville and Bolingbrook areas are the most difficult to fill. I am sorry for that information. I do have to say though, It is worth the wait, I absolutely LOVE my therapists. There has only been 1 that I did not care for and it was really because my son did not take to him. The replacement even took 2 months and that is because I decided to take him to clinic for speech.

You also asked if you should look for them on your own. I would say "no". If you want to get services now and no one is available for "in home" service maybe ask if you could go to clinic, if you are able. Tell them you want them to continue to look for an in home therapist though. My son has 2 OTs, 1 of them is out of St. Joes rehab clinic. Her name is Reenie (Maureen Harper) She is AWESOME and not that far from you!

I am not sure if these other 2 people I am going to give you have openings but you could ask They are both fantastic and "in home"!! OT- Cindy Heidenreich & PT- Rebecca Stonitsch.

I hope this helps!! If you need to talk or want more info please contact me.

A.

As everyone else has said - it can take a while to get therapists through Early Intervention.
I have twins that were born very prematurely and they receive many therapies through EI - I think we are at 5 therapies each!
And I know for Speech and Occupational - we had a LONG wait. In fact, our speech therapist is due with her first baby anyday now and we don't have anyone to fill in for her while she is on her maternity leave!!! :(

I would just stay on top of your EI coordinator - that's what I did. I also asked around....friends...friends of friends...to see if anyone had a recommendation for a therapist and if I got a name, I'd call my coordinator and she would call.

When we were having trouble finding an OT, I called Easter Seals myself -- there's one in Naperville, one in Joliet and the main one in Villa Park... there's likely a wait there too - but I'd get on the waiting list there in the meantime! Diana Dixon (The contact at Easter Seals) is very nice!

Good luck!

I'm not familiar with your child's problem but I have a little experience with the EI program. OTs with availability for new clients can be difficult to find. Apparently, both OT and ST (speech) are in high demand and you wait until your Service Coordinator can find one. (And then you have to work on fitting into their very limited schedules!) We were told that the wait for an OT could be several months.

However, your hands are not tied. Without a doubt, you can search for an OT or PT on your own: make calls, find out if they participate in EI, and (most importantly) if they have availability in their schedule for a new clients. If you find someone who takes EI cases and has time in his/her schedule, call your Service Coordinator and let her know who you found and that you want to start service with that person. You are essentially doing your Service Coordinator's job, but there's nothing wrong with that. My Service Coordinator was surprised but was probably very glad that she could take us off her "to do" list! Your Service Coordinator will then handle all the necessary paperwork between her and the therapist...and you'll be on your way.

I hope you get your services soon. Good luck to you.

Dear N.,

While you wait to get into therapy, there are many things you can do on your own to prevent torticollis from getting any worse and actually make it better. I've written a bunch about this before, so maybe you can find my old posts. Plus, there is a ton of info out there on the internet. But basically you want to create a setting that encourages your baby to turn his head away from the short/tight side. Most people change their baby's diapers with the baby's head to the left because most parents are right handed. If you change the direction your baby faces, you encourage him to look in the other direction and turn his neck. Also, place him in the crib the other way so that he has to turn his head to see you. Try proping his head in the carseat so it can't flop to the preferred side. Avoid the bouncy chair if possible -- this is the worst thing for torticollis. My youngest had this and recovered just fine with some simple repositioning techniques. Good luck!

Hi N.. :) My son is going through Early Intervention currently to get Occupational Therapy, Developmental Therapy, and Speech Therapy. The weird part is we only called them in because he wasn't walking yet and thought he might need physical therapy... but that's the only one he DIDN'T qualify for.

He had his evaluation in mid December (I think the 16th). He will be starting his FIRST session of Developmental Therapy next Tuesday and we have not even been matched with the other therapists yet. So, what's that... two and a half months?? The sad part is, his needs have changed since then... the things they marked him down for on the evaluation, he has since learned to do.

My only recommendation with this whole process is to STAY ON YOUR Service Coordinator. Call him/her alllll the time to see what's going on. Don't let yourself get pushed to the backburner. I don't think there's really a way to start looking for a therapist yourself, but you shouldn't need to if you keep CONSTANT communication with your service provider.

Good luck and many prayers to you and your child.

I'll echo a lot of what's been said. We're in EI right now, and my daughter needed all of the hard ones to get--physical, speech, and occupational. It took a LONG time to get services, partly because those therapists are at a premium and partly because our service coordinator wasn't on top of things and I had no idea. My advice is to be patient, but don't be afraid to politely continue to touch base with your coordinator just to make sure everything is being done. It's a great program, and yes, their funds are severely low right now, which doesn't help the situation. But the service they provide is priceless.

My twins are in early intervention. They were born extremely premature so we have a lot of therapists. I definitely agree with all that was said to you so far. Definitely keep on them. Side note, the state (obnviously) does not have a whole lot of money, so a lot of therapist are leaving to go to a facility where they are paid. They need an income too. With EI, they like to do home enviornments because it is in the natural setting. If it is taking a long time, I would look at a facility. I think someone mentioned childrens hospital and that they have EI therapist meaning you can still go through the EI program. The state is not in favor of this, but that is fine. If you are willing to travel, I stronly encourage it. We had them coming to our house and now we go somewhere. Honestly it is a constant battle and stay on them! Good Luck.

My daughter was in EI two years ago. We were fortunate to work with some top-notch therapists; however, every step of the way getting there I was met with excuses about lack of funding and/or professional resources. To be blunt, I had to call BS on that. I informed the case manager that regardless, my child needs the services. The case mgr at EI is the one with the database that has the ages of other children. She has the information as to when the next child will be aging out of EI and therefore can tell me when we can expect to take that opening. YMMV, of course, and every child's situation is different - still, if I waited for services without calling and following up my kid would probably still be in line.

Good luck.

I dont know if this has been mentioned yet, so if it has Iam sorry in advane. But AID is a wonderful program. My son went there for speech and they specialize in many areas of different types of therapy in all age groups from birth all the way up through adulthood. I know they have several centers. But at the time we went my son was only 2 we lived in Aurora and we went to the one that was on Highland. Good Luck

I cannot speak highly enough of Easter Seals in Villa Park. My son has been going there for PT for ~6 months. They have PT, OT and just about any kind of therapy under the sun. The PTs are wonderful, funny, and are pros at making "work" into playtime. If you are there for more than one therapy session they make an effort to schedule them back to back. As of March 1 they are opening up on Saturdays to accommodate more appointments. The contact there is Diana Dixon ###-###-#### and here's their website: http://dfvr.easterseals.com/ A call to Diana for some guidance (even if you don't attend Easter Seals) would be beneficial!

This was my experience with EI (my son had very mild torticollis, too): After 2 visits with their PT, she was pushing me to invest in the helmet to correct the torticollis. I took my son to the pediatrician and asked his opinion. He said that usually he'll agree with a PT's recommendation, but definitely not in my son's case. He referred me to Arlington Pediatric Physical Therapy, and I ended my EI and switched to using my own insurance. I really liked going to Arlington Pediatric PT because they had a lot more resources available to use with my son (gym, exercise balls, etc). Though, I did have to wait a few weeks for an available time slot to open up. But I also had to wait a few weeks before EI started when I used it. Good Luck.

I would have your pediatrician refer you to a private practitioner. They thought my daughter had torticollis and I was able to get her in to a physical therapist right away. My daughter ended up not having "true torticollis;" she had "torticollic tendencies" instead. The therapist was great. She showed me some exercises to do with my daughter at home and did a follow up 3 months later to make sure the problem had corrected itself. I was very grateful because she was conscious of my insurance coverage and didn't make unnecessary recommendations or appointments. Unfortunately this particular practice that I used has since moved to the suburbs, but I am sure your child's doctor knows of another one that is good.

If your insurance will allow you to take this approach I would definitely recommend it over the early intervention services for the city. As a teacher in the city of Chicago, I know that early intervention services are bombarded with children right now and they are having trouble keeping up with providing services. I hope this helps! Good luck :)

Hi N.,

Our son was diagnosed with Torticollis at 4 months, and went immediately into PT.

I took the initiative and called around to find a therapist who was available, we ended up using Angela at "The Pediatric Place" in St.Charles. Although it was a little drive, it was well worth the results - Angela was amazing, and our son's torticollis resolved in a few months. Their # is ###-###-####.

Hope that helps!
-M.

Hi N.!

My daughter has several disabilities and in the beginning had no specific dx. She qualified for services through EI, as well. The one we had a hard time with was Speech. However, we live in an area where Speech therapists are very hard to come by. Long story and 6months later...I forced the issue and "requested" that until they could FIND someone to come to the house, get her into a clinic where they DO have therapists available!

Force this issue. They have a legal obligation to provide services for your child. Yes, it is "SUPPOSED" to be in the "natural" environment. HOWEVER, if THEY cannot do that, then THEY have to find another way (i.e. a clinic) that CAN provide the services.

If you have any questions, please feel free to message me. I have been through all of EI's issues!!!

Hi N.,

Unfortunately, I think the lack of therapists across the board is just the nature of the beast right now. We went through the Early Intervention program for a slight speech delay with our son last summer. We were waiting for a speech therapist for approximately 2.5 months. When we finally got one, she was a speech therapist-in-training. She was also rather flakey -- cancelling at the last minute, not calling back to reschedule. We were offered the option of taking our son to therapy sessions at La Rabida, but couldn't do it with our schedules.

You might want to check if you have the choice to take your child to therapists, rather than having therapists come to your home.

Also, the EI program is "all-you-can-eat." We didn't qualify for any reduction in fees and had to pay the full price every month, whether we had one session or four sessions. So, it's in your best interest to push for as many sessions per billing period. Just play up the neurotic mom -- "we're really concerned that our child needs more help to get back on the development track."

Lastly, if you can't get more therapist time, then ask the therapist to teach you exercises to do at home by yourself.

Good luck!
D.
p.s. We stopped the therapy after eight weeks because the therapist just wasn't reliable, and we weren't too concerned about our son's speech delay anyway (he's a boy and he was being exposed to English and Mandarin. Now he speaks in both).

Both my daughter were diagnosed with torticollis (one at 3 months and one at 2 weeks). I took them both to my chiropractor (who is also experienced adjusting kids/infants). He got both of them using the full range of motion in their necks within 2-3 weeks... and then we continued seeing him about once/month. They are doing great and never needed physical therapy!! Not sure where you are located, but if you are in the Naperville area, the chiro we go to is Dr. Whitney ###-###-####). Good luck!

N.,

Torticollis is often second to birth trauma, breech or forceps delivery, leading to rotation of the upper spinal bones. It is either present in the first few weeks of life and is known as congenital. Acquired is seen in months or years after birth following activity or trauma. In either event the SCM, a major neck muscle, contracts along with rotation of the spine bones in the neck. I would suggest a chiropractor in your area to fix the rotation that is more than likely the major contribution to the SCM tightness. Hope this helps.

I'm an Occupational Therapist. I don't work with the pediatric population, however, i do work at marianjoy hospital in Wheaton and we have a Fantastic outpatient therapy program.

I do know MOST facilities take 2-3 weeks to get you statted. Good Luck

My daughter was diagnosed with Torticollis around 4 months of age, and we met with a Physical Therapist at the Hollister Building in Libertyville on the 2nd floor. My pediatrician at Lake Shore Pediatrics recommended them. Anyway, the p.t. there showed us some exercises, stretches and ways to correct this at home. She explained that if we could not make any headway, that we should return for ongoing p.t. The home exercises worked. She showed us how to use a "tipped" positioner for many months so that she looked in one direction while she slept on her back. We also stretched her neck in the opposite direction to help with mobility. She is now 21 months and is as normal as can be. I hope this is helpful.

I went through First Steps with my son for this also. We started with PT for one year then went to OT for 6 months. It took about 1 month for First Steps to contact me to set up an evaluation then another month for them to conduct the evaluation. Services didn't begin until after two months from getting the referral from my ped. Everything they do much be signed off on from your ped. so I'd make sure that isn't holding things up also.

I only know about the early intervention program and what I learned by going through it twice. One of my sons had occupational therapy & speech, the other one only had speech therapy.

There are probably plenty of therapists, but not any that can take your chid through the early intervention program at this time. The same therapists may be able to take you as a private client. As far as how long you wait for early intervention services, you wait until they find someone with an opening.

If you go on your own, it can be billed to your healthy insurance, but first find out your coverage. Some insurance companies only cover a certain number of therapy visits per year or per life for each condition.

The amount of money you pay for early intervention services is billed on a sliding scale based on your household income. When my son needed occupational therapy, it was cheaper for me to pay to do it privately and go through my health insurance than it was to go through early intervention. Going the private route allowed me to have a wider selection of therapists as well.

You can absolutely look for therapists on your own. Call your case worker and double check what type of certification the therapists need to get paid through EI. Then call, call, call and find a therapist who will fit your child's needs.

I'm in the field of special education consulting, had to do this for my own daughter and also have a friend who is a developmental therapist for EI who gets hunted down by parents being neglected by the system.

You can do it!

My daughter was born with torticollis and I was beyond freaked out about it. The dr. we chose for her was the same we had for our son, at Illinois Masonic Ravenswood Family Clinic. On staff there is Dr. Schuenaman (sp?) who is a D.O. (Doctor of Osteopathy - Degree same as MD but with a focus on skeletal and muscular systems). She fixed my little girl! I had public aid at the time, so she accepts that and is amazing as a person. I HIGHLY recommend her if she will take you. Phone # for the clinic is ###-###-####. Good luck!

Hi, N.. My son is receiving PT and DT through EI. We went though Child Family Connections and have a really great service coordinator, Rebecca. My son was first assessed last June, but Rebecca could not find a PT for a couple of months (the end of August if I recall correctly). As one other mom said, I think that it is just the way things are with physical therapists at the moment. I know that you would like to get started as soon as possible, but I do not recommend going outside your service; I have met people who did that and then became stuck with huge bills later. If you are very anxious to begin, you can see if your insurance will cover any therapy expenses for your child. If your insurance is helping or you are willing to pay out-of-pocket, try City Kids on Elston. They are terrific.

I have been through this EXACT thing!
My pediatrician gave me the number to call. Within a week, one of the "facilitators" came to my home. She talked all about the program (very detailed) and then we signed paperwork. She was very friendly and informative. We then made an appointment for both developmental and physical therapists to come to our home and evaluate our 6 month old daughter. They came the next week. The visit went well and fortunately, she doesn't need anything intensive other than a TON of tummy time. Tummy time Tummy time, that was the #1 thing. The final report has yet to be sent to us and their visit was 3 weeks ago.
Our case was closed.
Hope that helps!
Keep calling them. In the meanwhile, see if your insurance would cover physical therapy for you child and if it does maybe go with them if the wait is too long for you for the other service.
Just my 2 cents. Keep calling the EI service though to indicate your concern that this be dealt with promptly.
Good Luck!

You can definitely use your own insurance and get started with services. I know that Joliet has an excellent Easter Seals program that offers OT and PT. I would expect most if not all of their therapists are credentialed to provide services through EI and could switch over the that program if indicated. Or, they can just bill your insurance. It is up to you. Sometimes with torticollis, all it takes is a few formal sessions then you can carry out a home program, checking back in once or twice a month with your therapist. However, if you child is more involved, then perhaps the therapist will recommend weekly or twice weekly until all goals are met. Good luck!

My daughter has been evaluated through early intervention and due to difficulties in finding a speech therapist that could come 2 times a week, we decided to find a therapist on our own. It can be cheaper to find a therapist on your own since you can have it covered partially through your health insurance. Good Luck!

A.