's Appt. with KKR

[Guest guest]

AnnMarie,

I just have a brief moment, but I wanted you know that I read your whole post

and my heart REALLY goes out to you! I can only imagine how difficult this

entire situation must be for you. It sounds to me like you are doing

everything you can and should be doing. Checking back with the STARband

people is a good idea. Okay, I will write some more later, but in the

meanwhile hang in there girl! You are doing all the right things - you are an

excellent mom and is so blessed to have you!!!

Marci (Mom to )

Oklahoma

[Guest guest]

AnnMarie,

For starters, let me say kudos to YOU for going that extra mile for

- he is soooooo lucky to have you as a Mom, you are truly awesome.

The fact that you have gone above and beyond to get real answers from the

expert shows that you have NOT failed your son, you are helping him every

step of the way!!!!!! It's a shame that we as parents have to be so educated

and on top of things about medical conditions so that we can go against the

" professionals " and do what's right. In today's world, we are so much more

proactive, which is a good thing, years ago you would never argue with your

Doctor! This is a new thing- and your great at getting to the bottom of

this! Good work Mom (and Dad too!!!)!

I know KKR's meeting with you was not as positive as you would have liked and

your bummed that you feel this is starting all over- BUT- there is a positive

side! is still young enough for plenty of therapy (and esp. now

that KKR has given you 2 videos- make sure you make that pt watch it in its

entirety- and make certain that talk with the Superviser gets detailed so

they can use that to educate all their pts!!) and you probably have already

realized through other parents that tort is not a quick fix problem- we have

been told to keep an eye on this until 2 years of age. I'm sure

was measured as really tilted because of the teething- we have talked about

this- some days is wayyyy tilted and the next straight as an arrow.

I personally feel that if they can be straight, the hard part of getting

that muscle relaxed is " somewhat " over- although still needs continuous work

as it can get tight easily. Although KKR is the expert here, she did only

see him in action for a few hours, as opposed to what you see all day,

everyday! You really are his greatest judge. Now that you have those

answers, you sound like you have your plan of attack ready to go, and a good

lecture to the pt about what you expect and what you don't is in order- as

you said- or you will seek a more professional pt with expertise in the area

of torticollis.

You really have to weigh the pros and the cons about the helmet.

was never measured by CT- so maybe that's why I'm not so into the numbers

game- I feel that if you can't see it, you can't see it. I have no idea if

may be off by 2 mm- and frankly, I don't care because to us, his

biggest critics, he looks fabulous from where he's come from, and we honestly

don't spot it without the looking glass. If you feel you have achieved great

results, then don't do it. If you feel you have something to gain, 3 months

would not be a killer and it would go probably go by very quickly. Looking

back, I'm sure you can't believe he actually did 7 months! It's a tough

decision as you know, because you want to do all that you can. You really

need to make a list of pros and cons about the helmet process. What do we

hope to gain? Is there facial asymmetry noticeable to us? Keep in mind also

that if the tort is not resolved, it may be pulling down the facial features

as well (try light upwards massage around the jaw, cheek, eye area, as well

as behind the head (occipital) in addition to stretching out the muscle. If

you do decide to band, my opinion is that the DOC band at his age is the best

bet as it applies light pressure where some bands/helmets do not.

Think of all this new information as a good thing- had you not done your

homework and been told to start with pt again, you would have really been

upset down the road- so this is a blessing in disguise. At least you were

smart enough to do something now, while there is still good time, to resolve

this very fixable problem that has through hard work and time.

You are his best advocate- and you can be the next kid's voice by lecturing

EI on how they have let you down and what they need to do to get more

educated. Every decision you make is done with heart, soul and lots of love,

little is in great hands! Good luck to you all in your decision

making, not a fun process.

Again, look forward, take this and run with it, and I am sending lots of hugs

from my little tilter your way!

P.S. I have found a pediatric chiro and was scheduled for yesterday but had

to cancel, I want hubby to be there too so I'll keep you posted for our next

appt. He said he uses the activator and no spinal manipulation, only massage

(oh, that would be nice! I hope he can see me too!

Have a good day, try not to worry (I know, I know- easier said than done) and

just remember that this is all for the best- its better to be educated and

informed than not and bury your head in the sand. Your a great mom, keep us

updated!

' Mom

>>>>>Hugs to from 'lilstnick!<<<<<<<<

[Guest guest]

Hi all!

Our trip to see KKR in Cleveland was very frustrating!! KKR is totally amazing, and so very helpful and informative!! I would love to have her as our reg. PT for . Kudos to all of you out there who do!!!! We were with for approx. 5 hrs. Three of which was basically showing us all of the stretching/strenghtening exercises that should have been getting over the past 9 mos. he has been in PT. KKR said does have complete ROM and he also has no spinal rotation -- which is very good. She did say that he has a good bit of tightness in his major neck muscles and also that his occipitals were very tight. He also has moderate jaw asymmetry. For this we must do the stretching and strengthening. Am I so PISSED OFF at our reg. PT right now. I feel that has been "cheated" so badly over the past 9 mos. that she has been with him . Last fall I requested a meeting with our PT and the head of EI ( goes through EI for his PT) about the lack of therapy he was getting at home. I had mentioned being in the tort and plagio support groups and that everyone does stretching/strenghtening exercises at home. I was told by his PT that this was not necessary in 's case because his tort was extremely mild. I was also told NOT to do anymore PT than what he was getting 2X mo., at daycare, because I could actually do him more harm than good!!!! So, believing her, we didn't do anything. As time went on, deep down I thought we should be doing more but fearing it could actually be worse for him -- we didn't!! I feel like such a failure to him. Why did I listen to her. I should have known better, after all, being in these groups I learned so much and with the internet and my own readings -- I just shouldn't have listened to her. KKR said that has approx. a 25 degree tilt!! I thought maybe 5 degrees tops! He is teething (1yr. molars) right now, so I do think his tilt was a little worse on Saturday than it normally is. We brought home with us a video tape of knowledge (actually 2 tapes)!!! We made a tape of the entire session for our reg. PT. I called her supervisor (the coordinator of EI)yesterday, she wasn't in until the afternoon. By the time she got back to me I was ready to leave work. I told her I did not have enough time to talk to her on the phone and we made arrangements that I will call her this morning at 8:30 a.m. I am going to tell her about our consult with KKR and what she had to say about the at home therapy (it is a must and we are soooo willing to do it!!!!!) We should have been given exercises to do at home for 9 mos. ago!!! Now he is almost 15 mos. and I feel we are just starting out!! I will tell her that we now want the PT done weekly. We want our reg. PT to do the exercises that KKR is performing on done at those sessions and that we are starting them rigorously at home. If this cannot be done -- we will look for another PT. Where we will find one we have no idea -- our PT, like I said is through EI, and she is supposed to be the best pediatric PT in our immediate area and actually the only one that I know of!! (We looked around for one before we went through EI.) I can't wait to see what our PT has to say after she sees this video tape -- she acts like such a know-it-all!!

KKR would like to see back in about 8 wks. to check on his progress. I will keep you all posted.

The other problem we encountered was the measurements that KKR took of 's head. We were completely astounded!! He had been in his STARband for 7 mos. and we thought that he got great correction, but after her measurements I am completely dumbfounded. He had a cranial vault measurement of 21 mm and a facial asym. of 4 mm!!!!! How can this be!!! That puts him in the severe plagio range!!!! Anything over 10 mm cv they recommend banding. When he first started his STAR treatment he was considered to have mild plagio. His neurologist thought he should be finished with his STAR after 3 mos. in it!!! Now how can his plagio be severe!!! He looks so much better now than he did when he first started out!! Anyone who sees him thinks he looks wonderful and said they see NO facial asymmetry!! We see slight facial asymmetry and a slightly flattened area to the right-back-side of his head. Now that his hair is getting thicker (he's had his second haircut) you can barely even notice it. KKR said that if we do decide to band him, at his age, we would be lucky to get 50% correction. He would have to wear it for 3 -4 mos. over the summer months. Out of the 15 mos. he has been alive he has worn a helmet/band so far for 7 of them!!! She also said that his asymmetries will never go away they will just"grow with him". Although KKR did say our main concern right now is his correcting his tort. I am so confused!!! I have not slept since our appt. on Sat. I couldn't even concentrate at work yesterday -- I was going to take the day off but I didn't -- probably should have. I am sick with worry about this!! My husband is totally against putting him in a DOCband. He said his head and face look fine and he sees no need for another band and that he has spent 7 mos. in one already and he thinks it has done wonders for him. As for the jaw asymmetry KKR said a lot of her tort/plagio patients who have asymmetries of the jaw need orthodontic work later on in life anyhow. I keep telling myself, and my husband, that it can only do good for him it cannot make it worse, but I too, hate the thought of putting him in another band. I feel he has already done his time, so to speak. Another thing was, towards the end of 's STAR therapy he was starting to try and take off his band. What if we went ahead and got the DOC, would he keep it on his head?!?! I certainly do not want to ruffle any feathers here, but one more thing - I think CT has done wonders and that the DOC band is truly a godsend, and I in no way doubt the good it has done, but how accurate are the measurements. I was told by our orthotist that for the STARband they do not take measurements because the margin for error is so great. My husband agreed, saying when measuring with calipers how do you know if you are putting the one end (the guide end) of the caliper in the same exact spot for each measurement, unless you somehow put a mark on the skull to use as a guide (like maybe even a dot from a felt-tip marker) -- after all you are measuring in millimeters -- you must be very accurate. My husband said for s measurements there was no guide markers used. I was to busy holding to pay any attention. If you are off a teeny, tiny bit it could be the difference of 5-10 mm's. I just find it so hard to believe that 's asymmetries are that bad!!!!!! Just before Easter I brought in to the office where I work, they hadn't seen him since he was in his STAR. They thought he looked great! When they heard that he may be getting banded again they could not imagine why!!!! Maybe I'm grasping for some, any, answers I can get!!! I have attached a pic of taken when he was about 10 mos. old (best one I could find that is a semi close-up of his face). He is showing his tilt in this pic, but you look at his face, and please let me know what you think of his asymmetries. I know that you all have a "trained eye" for this kind of thing. I thought I did to, but maybe when it is your own child you just don't see it!! I thought I could see it even more, because I look for it all of the time. Do you think his asymmetries are mild, moderate or severe? I do not have a pic on the computer of any before and after photos of the back of his head, when I do, I will put them on here. Again, I am soooo confused!!! Should we or shouldn't we - and I do have my husband to deal with!!! I know that me and my husband can only make that answer, it is such a huge decision to make. His life is in our hands and we all want to do what's best for our children. I am so afraid that once he loses the "babyfat" in his facial features that the asymmetries will be more apparent. I do not want my child to look like some kind of freak (other kids can be so cruel) or have serious medical problems in the future because of these asymmetries. I would not be able to live with myself for not doing EVERYTHING remotely possible to help him. I already feel like I have failed him with the torticollis, but I thought I was doing the right thing by listening to his PT even though I read (from the tort support group) about all the therapy that needs to be done at home. I tentatively have an appt. penciled in with CT at Straight Ahead this Sunday for a casting (that will be a nightmare all over again!). KKR said to think it over a couple of days and if I want I can cancel the appt. Straight Ahead was about a 3 hr. drive for us, so distance-wise if we get the band, is not that bad. I'm so sorry that this was so long (if anyone has even read the whole thing), but I had to get everything out. I know all of you can will understand what I'm going through right now. I do not know what to do. I've placed an email to Dulcey Lima (from Orthomerica - makers of the STARband) and I'm waiting to hear from her. ( What I'm waiting to hear, I don't know.) She had been in contact with me when she heard graduated from the STAR and wanted him to be on their website homepage. I guess I'm curious what she thinks of the measurements. I am also going to contact 's orthotist and see what he has to say. Well, thanks to whoever decides to read all of this. I have a huge decision to make. I will keep you all posted as to our decision. Take care.

AnnMarie & (14 mos.)

STAR grad

9 mos. into PT for tort

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My posts are not showing up in order!