[mommytoEli]

eli has an appt with his peds on friday....i am bringing up his issues again, but i need some help. i have asked dr about it the last 2 times eli was seen....and he always says the same thing- call the school district when he turns 3...so i can do that next week....and call xyz place about therapy for eli. well...i called that place, and they don't take our insurance. in fact, all the ones i have found, don't.

so..i ordered a new vest for eli, hoping that will help with some sensory issues, and i am taking eli to a little gym class next week to see if he likes it. the thing is, eli is NOT cooperative in a therapy setting anyway..but i'm hoping at the little gym...he will "enjoy" walking on the different things in bare feet...and he'll have to learn to put his foot down....and maybe that will help, too. it ought to be interesting. lol.

so my question is....in the meantime, i just really feel like eli should see SOMEONE. so who or what next? if eli's toe walking continues to persists...who would he see next? an orthopedic surgeon? should i ask to see one? our doctor is super nice, but i have decided he is not too helpful if you don't know what it is you are wanting. he is supposed to be one of the best. i want to sound educated and know what i want on friday....any suggestions?

[avoel]

What you really probably want is a referral to a good developmental/behavioral sciences center to see a developmental pediatrician and have an evaluation done. They are probably the best ones to start with and coordinate all the therapies etc. I have been down this road with my DD since she was three (she is now 6) and our developmental ped was a lifesaver!

[mommytoEli]

thanks..i've never heard of that before...so that is very helpful. thank you!

[Mindybeth6]

I 2nd the above post. I will also e-mail you back about the blanket. I need to e-mail Tara and get the website again so give me a bit. As for toe walking. This is very serious. It is. Really force that DR to give you an option or something to be done. One of the boys, 4, in my ECIS placement is now being casted, every week, with thick, heavy casts to force his feet down and to gradually stetch back out his tendon from toe-walking. It can't be ignored or this his tendons will not properly grow. With "toe-walkers" it is often thought that it's a BAD thing to leave their shoes off. When in shoes, they have more opportunity to NOT toe walk because of the weight. KWIM? I am going to ask my OT tomorrow for some advice for you. Mikayla toe walks but not constantly so at this time it's not an issue. FYI- insurance companies don't cover therapy for Sensory, or really most things like this (autism included). It's not thought to be medically necessary. Ridiculous, I know. Is Eli a climber? Mikayla needs to regualte her vestibular sensations so we were able to get an AWESOME climber through Step 2 for the house FREE because it was deemed a "need" for her FSS funding, which we qualify for through her school. You might want to look into something like that. Also, so you have a trampoline? Let me know about the vest. Did you get the one I sent you the link to? Bear hug? They ship quickly and Mikayla loves hers

[mommytoEli]

yes...i got the bear hug vest, small, just like you suggested. it looks like the one his pt reccommended....like a year ago..lol. slacker mom. i can't wait. i hope it makes a difference. that's neat about the climber....eli likes to climb. i have thought about getting a climber and putting it in the house somewhere...lol...we already have a ball pit, so why not. which one did you get?

[vegaschristina]

I am a foster/adopt mom, not a Guat mom, but my youngest toe walks too. We keep her shoes on her and it helps.

You don't have to wait until Eli turns 3 next week to call. Call them tomorrow and tell them he turns 3 next week and you'd like to schedule his evaluations for as soon as possible.

[Theslaws]

Hi!
If you cant find somewhere local that is "in network" for OT we have had some insurance companies pay for us as an "out of network" provider as you dont have any in network options. Does that make sense? OT is the way to go as far as working on the problem from its root - the cause of the toe walking is sensory based. If he does it for too long it does sometimes become physical (short heel cords) at which point PT or ortho becomes a need. Maybe you can find a private therapist who is not affiliated with a clinic that may provide services for a lower rate based on the fact that they dont thave the overhead of a clinic/hospital.

As always, let me know if I can be of any help!

[rjvpmn]

We went to a Developmental clinic. The kids saw a OT, PT, Dr etc. Our daughter has Mild Cp and toe walks. Our son toe walked off and on and he has sensory issues and possible autism spectrum. Our son is 12 now and does not toe walk at all.. it ended for him at age5 or so. Our daughter wears orthotics and she still toe walks some but mostly when barefoot. As far as sensory issues I did lots of therapy etc and I think that if you keep a really good sensory diet.. movements, textures and exposure to things.. play with sand, mud, clay, water, grass, rocks.. i let my son play with shaving cream alot in the tub.. he played in mud and sand and water all the time. We made homemade play doh and just tried all different things. The weighted blanket helped for calming.. and he LOVED making tents

[jenniem]

My Alex toe-walks. He is a sensory seeker. He is on his toes 90% of the time. His ankles and tendons are already pretty tight. He has been seeing a PT through EI and it is helping some. By that I mean, he is still walking on his toes, but has more range of motion. So, he can get down, but chooses not to. Before he had trouble kicking a ball or bending down, etc. He seems to be a bit more coordinated now. If you find a way to see a PT I would recommend it.

We have seen an orthopaedic surgeon on PTs recommendation. He said most kids that "outgrow" walking on their toes do so after 3 years old, but it's hard to predict. He does not recommend orthotics (braces) as he doesn't see the results (his opinion). He sees results with serial casting. They only cast in the winter months- for up to 6 weeks. We are taking a wait and see (and PT) approach until next winter. It really depends on the tightness in the ankles and tendons. (I felt better after seeing him)

The main objective is keeping/getting range of motion. Stretches help a lot. Massage. I agree with the sensory diet.

I don't know if any of that helps.

[mommytoEli]

ok...i called the school district...my home school will call me for a screening time. i feel kind of negative about it. like that they are going to say his issues are age appropriate, like EI did. but now that he is 3 (well, on friday) he really should not still be toe walking at the very least.

can't wait to go to the dr. on friday....at least it looks like i did everything i can.

[avoel]

My personal experience with my school district has been that they were much better at providing services once there was a diagnosis and recommendation made by the developmental pediatrician. I too feel that if I had relied on them to do the diagnosing, my DD would never have qualified for any services (she has had an IEP for 3 years now, spent 2 years in the developmental preschool, is now in kindergarten and is thriving!).

[krafmatic]

I'd look into the developmental ped. I also wouldn't give up on the PT...does your insurance have a provider listing? Most do...you may have to search for it though. As far as Eli not being cooperative, give it some time. Both my guys were the same way. Gabe would not even interact (even why I was working with him and the therapist was standing to the side giving me directions) for a few weeks. We were paying out of pocket for a while and it was PAINFUL to spend $$$ every week while no progress was being made. There is a happier ending though...they both eventually warmed up to all their therapists (some quicker and better than others) and have been improving greatly.

[DeeVee]

As you know I'm not in TN anymore, but I am navigating the special ed system here in WA now. They have good services from what I can tell so far, but I would strongly recommend getting an eval on your own from someone who is on your side, KWIM? Not all districts are the same of course, but I have a cousin in another state who has had to fight every step of the way for her severely disabled son, to get him the services he really needs.

For Jesse, I am working with a dev. neurologist; in Eli's case I think a devel. ped. would be the way to go (as other posters have recommended).

Also, the school district has to look at how a child's disabliity/delay is impacting his or her ability to learn. So, you need to have an eval that indicates that Eli's sensory issues are hampering his ability to function in an educational setting -- the criteria are different than birth to 3 services.

Hope that makes sense. And I hope you are able to get Eli the services he needs!

[mommytoEli]

Originally Posted by krafmatic

I'd look into the developmental ped. I also wouldn't give up on the PT...does your insurance have a provider listing?

a) developmental peds....i can't believe i never heard of one before this thread....i'm going to look for one on my provider listing. lol.

b) yes...we have a provider listing...but within 100 miles there are no peds ot or pt on the list. there ARE pt...not for peds...and when i call...they are really more of a sports injury clinic for adults and older children and all of them refer me to a place where i am not covered. of course.

[angelkisses0102]

b) yes...we have a provider listing...but within 100 miles there are no peds ot or pt on the list. there ARE pt...not for peds...and when i call...they are really more of a sports injury clinic for adults and older children and all of them refer me to a place where i am not covered. of course.

Call and speak with your insurance company. In our case we had no OT's for DS within "X" number of miles of our home, so our insurance company covers the provider of MY choice as if they were in the plan. Same goes for his feeding therapist. I was so thrilled the day I found this out...and angry at myself for never calling sooner. It is worth a try.

Also, if they say no ask to talk to a supervisor and find out how you file a complaint/claim/request to get an appropriate and medically necessary therapist approved. Fight them...it is worth the effort in many cases.

Good luck!