15 month old getting AFOs - Mothering Forums
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#1 of 19 Old 06-10-2010, 11:46 AM - Thread Starter
 
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My 15 month old daughter who is standing and cruising, but not yet walking is getting AFOs next week. Her PT suggested that we get them for her because her right foot turns out while the ankle turns in. Now that she's had her fitting and the AFOs are in and ready, I'm wondering if it's really necessary. I guess it's too late now. A few questions, though.

My daughter has had issues with a rash on her legs, maybe eczema. Has anyone had to deal with rashes and wearing AFOs? Also, how long might I expect her to have to wear them since her need for them seems relatively minor? Will she be able to crawl in them? Should I take them off for naps? I know I can ask when I go next week to see how they fit and pick them up, but it's been on my mind and any info or tips I can get would be greatly appreciated..

Marie-Mom to two boys and a girl.
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#2 of 19 Old 06-10-2010, 08:26 PM
 
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Out of curiosity, why is she in PT? just wondering what her differences are that brought her to PT in the first place

My son has bilateral clubfeet and whereas he never had AFO's he's in braces... nighttime only now, but he wore them 23/7 for 3 months.

They never seemed to bother him and he managed (and still does in the mornings before we take them off) to stand and cruise with his "boots and bar" just fine

No rashes here so I'm not much help there but perhaps someone else will chime in... best of luck to you both!
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#3 of 19 Old 06-10-2010, 10:15 PM
 
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We wear ours 4 hours on 2 hours off while awake only. It gives her skin time to breathe. You will also need to get several pairs of smooth breathable knee high socks to go under the AFOs, we change ours during the day to keep her legs unsweaty. I just lube her up like normal during the day and we don't have a problem. If she has a crusty patch, we put her ointment on it and then a non stick gauze then the sock.

Overall we do not have any problems.

Wife to M , Mommy to DS aka Captain Obvious  (06/06) and DD aka Lissalot  (03/09, anoxic brain injury)
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#4 of 19 Old 06-11-2010, 07:48 PM
 
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You might want to get an opinion from your dr or an orthopedic surgeon. 15 months isn't even considered late for walking (18 months is). We got them for my ds at recommendation of his PT because he walked inward on his feet and he wore them for a year and a half. It didn't seem to be getting any better so I found an orthopedic surgeon and set up a visit in case my son needed surgery or something. He said he was knock kneed and it would correct itself then he was 5 or 6. He said there was no need for the braces and that they may actually restrict and weaken the ankle (which my ds did sprain his ankle at age 2 when we took them off for an hour). He said physical therapists are quick to prescribe them but it is more like a bandaid than a fix and it could make it worse. I never even questioned it when the physical therapist mentioned it. It may be necessary for some kids but I would ask your dr first.......because we went through 2 pairs in 18 months which was he didn't even need. I was very upset.
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#5 of 19 Old 06-11-2010, 09:00 PM
 
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There was talk of one of my DDs getting them- she has a mild CP diagnosis and did not walk until 18 months (she was 2 months premature), but we decided to wait and see.

They used Kinseo tape for a few months and that worked great! She also did PT from 17-26 months and again from 3.5- present ( this last round through the schools). We did OT from 25-32 months, 3-3.5 and again from 4 to present (this last round through the schools). She toe walked and walked 'wide stance' for a long time and still occasionally toe walks, but it has gotten a lot better.

She has done all the gross motor milestones---just 6-9 months late. She fatigues quickly and can be uncoordinated at times.

For the excema & Kinseo tape-- we used Aquaphor a lot when she was 'untaped', and made sure to put cotton clothes on her to let her skin breathe, I can imagine the same thing would help with AFOs.
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#6 of 19 Old 06-14-2010, 10:27 AM - Thread Starter
 
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Thank you for the replies. My daughter has a genetic disorder called cri-du-chat. She had a low birth weight and low muscle tone as an infant. Her muscle tone is fine now and she is doing WAY better than we could ever have imagined after googling her syndrome. I will try and post a picture when I'm home. She really looks and seems typical. She has had a PT and DV? (developmental therapist) come on alternating weeks since she was two months old. She is a little late on some things, but within the realm of normal. The only thing I'm really worried about is speech, as that tends to be a common problem with her syndrome and she still doesn't have any words.

Back to the AFOs. The PT and the DV both noticed her right foot turning out while the ankle turns in. It really doesn't seem too bad to me, but when they suggested the leg braces I figured they knew what they were talking about. Of course, now that they have been specially made for my daughter, I'm second guessing the need for them. I feel like I ought to at least give them a try since they were made and are waiting for us, but I will talk to her pediatrician about them.

Marie-Mom to two boys and a girl.
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#7 of 19 Old 06-14-2010, 12:12 PM
 
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It sounds like your PT feels the AFO will give your child more stability so she can learn to walk. Which would be a good thing, right?

If it would make you feel more comfortable about the decision you made, you could get a second opinion from an Pediatric Orthopedic Surgeon and or Rehabilitation Doc.

Be careful breaking them in. You don't want to go extended period of time right away. Be sure to check the feet for redness/rubbing. If it doesn't go away after a few minutes, then you need to have the braces adjusted.

We get special socks for Gabrielle (her feet sweat alot). We are fortunate enough our current insurance covers them. They are smartknit socks. AFO socks come as a pair.

http://www.smartknitbrace.com/about.html

My daughter's issues are different from your child's. However, Gabrielle was 6 months old when she got her first AFO. She now wears a KAFO on her left leg and a hinged AFO on her right. She always has either her KAFO during the day and an AFO at night on her right leg (she has no feeling or movement below the knee). She only wears the AFO on her right foot during the day.

Here she is climbing the climbing wall ata Bounce U Birthday Party.

http://img.photobucket.com/albums/v2...y2010029-1.jpg
http://img.photobucket.com/albums/v2...May2010030.jpg
http://img.photobucket.com/albums/v2...y2010036-1.jpg
http://img.photobucket.com/albums/v2...y2010040-1.jpg

Good luck! Let me know if you have any questions.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#8 of 19 Old 06-14-2010, 12:36 PM - Thread Starter
 
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Thank you for the link for the socks! Our daughter has supplementary insurance that covers a lot of things. I will have to try and see if it covers the socks. It looks like there are several providers near us that may sell them.

I do think that the PT mentioned giving her more stability. She did also mention to start off slow with them. One hour on and one hour off to start with. We run around so much (7 year old, almost 5 year old and 15 month old) that I'm afraid I'll have trouble keeping to a schedule. We shall see. I'll have to come up with a list of questions to ask on Friday when we take her in to try them on. I tend to go blank a bit when dealing with doctors and such and need to write things down.

Marie-Mom to two boys and a girl.
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#9 of 19 Old 06-14-2010, 12:52 PM
 
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Hanger Orthotics can usually order them for you and bill your insurance.

Speaking of insurance, do you have a Complex Case Manager with your insurance? If you don't, you should request one.

Our insurance even covered Gabrielle's Answer 2 shoes. She has a leg length discrepancy, so they cover it.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#10 of 19 Old 06-14-2010, 12:57 PM
 
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Here she is in her first AFO.

http://img.photobucket.com/albums/v2...ber2006018.jpg
http://img.photobucket.com/albums/v2...ber2006014.jpg
http://img.photobucket.com/albums/v2...uly2006078.jpg

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#11 of 19 Old 06-14-2010, 01:02 PM
 
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The other thing I just thought of. Make sure they put that black stuff on the bottom of the AFO. It will help keep her from slipping. The braces without shoes are still kind of slippery, but the black stuff helps. Runner's use it to repair their shoes.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#12 of 19 Old 06-14-2010, 01:05 PM - Thread Starter
 
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We don't have a Complex Case Manager with our insurance. So far our daughters supplementary insurance has just covered everything that we need for her. We haven't had to do anything special. I'll look into that, though.

Thank you for sharing the pictures! It looks like the same butterfly design in your daughter's baby pictures that my 4 year old picked out for my daughter's AFOs. She is beautiful!

Marie-Mom to two boys and a girl.
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#13 of 19 Old 06-14-2010, 01:28 PM
 
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We are back to purple butterflys. The last couple of brace changes have been the same design.

In the past she has had pink. Wrong color. It showed alot of dirt and wear. Go dark colors with the straps if you can. She has also had plain with turquoise straps (we lived in Montana and thats all they offered at the time).

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#14 of 19 Old 06-14-2010, 01:33 PM - Thread Starter
 
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We're too late for the straps. My four year old picked pink straps for her. I was leaning towards a dark purple. He really liked being in charge and picking things for his sister, though, so I let him. Hopefully they will work out okay.

I seem to recall mention of the black stuff to keep from slipping, but the person who made the mold for her AFOs said that would make it harder for shoes to fit?

Marie-Mom to two boys and a girl.
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#15 of 19 Old 06-14-2010, 01:42 PM
 
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I think it's more important you child doesn't slip when in braces and not shoes.

When you get the braces and got get shoes, you need to be able to take the insole out. That will give you more room.

StrideRite, New Balance and I think Buster Brown shoes come in Extra Wides if you need it.

Let me find the New Balance shoe Gabrielle use to wear. Be right back after I do Gabrielle's catheter.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#16 of 19 Old 06-14-2010, 03:01 PM
 
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This is the New Balance shoe she wore when she was younger.

http://shoes-brands.net/new-balance-...d-footwear.php

It comes in wide and extra wide.

I was also able to find a white tennis shoe at K-Mart that came in wide.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#17 of 19 Old 06-15-2010, 08:33 AM
 
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dry skin try vasiline on the areas...
Also we use youth small soccer socks we bought at a sports store. My son has a dennis brown bar and leg imobilizers for intoeing.

DS has dry skin and I cover his leg overnight with the vasiline and then put the gear on.

I wish he had AFO's he is kinda weak on the ankles and often falls during the day. (walking he is 21 months walked at 15 months)

Also ask the PT she may know something

she is super cute in her AFO's love the pattern
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#18 of 19 Old 06-15-2010, 09:04 AM
 
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I just wanted to jump in - we have an almost 15 month old who is standing with assistance and not cruising yet. He also has a genetic disorder (Noonan's). He just got his sure-steps yesterday. They are not quite like AFOs but similar. A ped. rehab dr recommended them, because she thought if he got more stable he would progress to walking better. He also has hypotonia and flexibility. His OT thought it was a good idea. He also has a skin issue so we'll see.

Just wearing them an hour yesterday, it seemed like he was more stable and he started cruising a little more!
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#19 of 19 Old 06-27-2010, 10:22 AM
 
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Just wanted to say "thank you" for this thread! I'm no stranger to AFOs personally but our 4 yoson (who inherited my Charcot Marie Tooth neuromuscular disease) was just casted for his first pair a few weeks ago. Going to take your suggestions on the socks (he's a sweaty guy!) and feeling good that he chose a dark blue pattern and black velcro straps (because of the wear n' tear appearance reported with the lighter colours).

Thanks again Mamas!

Mama to "The Pud" - 4 years.
We both have todder onset Charcot Marie Tooth 1A.
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