I got this comment the other day on my post about AAI and AOI. Since it is an older post, I thought the comment was worth sharing. It has a lot of valuable points. A huge thanks to this PT for taking interest in this very important topic!!
I am a PT currently going for my doctorate and chose this topic for my final project. I am in the middle of my research but so far what I have found is: radiographs should be taken at age 3 in a lateral view: neutral, flexion and extension positions to assess the atlanto dens interval AND the neural canal width. Often times earlier radiographs are not accurate due to the underdeveloped bone mineralization. The transverse ligament is lax in Down syndrome children and this is often the reason that the dens impinges on the spinal cord. If neurological signs and symptoms are present at any time an MRI or CT scan should be taken to assess spinal cord involvement. Special Olympics still advocates for xrays even though the AAP doesn't. My recommendation to the parents of children with DS that I treat is to obtain the xray. The purpose of my project is to educate the caregivers/families/teachers etc on the clinical symptoms that present itself as well as activities to avoid due to ligamentous laxity in DS. I believe strongly that education is the key in prevention and catching AAI at an early stage. It is important that the radiologist has experience taking these films as well as interpreting them. Prior to surgical procedures (even if before age 3), xrays should be taken. Signs and symptoms to look for include: changes in behavior, gait (clumsiness, loss of balance), complaints of neck pain or holding their head in an abnormal pattern, changes in bowel and bladder, clonus in their ankle, changes in tone or unusual fatigue. I hope some of this helps. Good luck to all of you and continue to be strong advocates for your children. I admire you all.
Does he grind his teeth every night? Have you talked to his dentist about getting a bute gaurd? I am a teacher and I have a student who grinds his teeth constantly the physical therapist recommended massaging his arms and shoulders pretty deeply and that seems to help some. I hope every feels well soon and that you are able to catch up on sleep!
I'm not sure actually. He doesn't do it during the day AT ALL. I was trying to describe it to him once and he thought I was crazy! LOL He wakes me up at least 3 times a week with his teeth grinding, but that doesn't mean he doesn't do it more often. I will try massaging him before bed and see if that helps any... I feel like the nights that I DO hear him grinding his teeth, he wakes up grumpy the next morning. I meant to talk to the dentist about his teeth when he was in for his last cleaning, but I had all 5 kids in there at once and Kass, Kam and Kellsey had so many other unexpected things we needed to address, I forgot.
Just curious how many flu symptoms you all had and how serious? My son has half the flu symptoms so I'm leaning toward just a cold but after reading about Kennedy's first symptoms, I am wondering about possible flu.
Well, Kennedy's just started out with a runny nose but turned into a high fever, achy everywhere, horrible cough and red eyes. Then she seemed to perk up for awhile in the morning and her fever would come back full force in the afternoon/evening. Keeghan was hit hard with the high fever and he actually threw up a couple times which I didn't even know was a symptom of influenza, but I guess it is. He too was really achy and had a bad headache and stomachache. Kassidy was down with a bad headache for a couple days but never had a fever and was never officially diagnosed, so I'm thinking the Tamiflu kept most of the symptoms away for her. I had the fever, achy all over and just felt YUCK! Thankfully, I was only down for about a day and a half. Kameron and Kellsey stayed healthy, thank goodness!! If you're worried about the flu, you can take them in for a quick nose swab... it doesn't hurt, but it's not exactly comfortable, and they can tell you for sure if it's influenza or not.
I so enjoyed reading about your delicious meal in Philadelphia !! I was born and raised here (will be 60 years in December) and never appreciated how fortunate I am !!! I live in NE Philly and don't consider trying those unique restaurants available so close to home :)
Oh you definitely should!! There are so many wonderful places to eat in Philly! I'll be talking about lots of them over the next several months! :) Frank and I LOVE Philadelphia. We love the city and the history and the busy-ness and everything! We've even talked a few times about living there after the kids are grown and on their own and we have nothing to do but spoil a bunch of grandkids and enjoy each other... and, you know, food. ;)
And we have a walgreens pharamcist in the family and he said they dropped tricare b/c they couldn't come to an agreement on payment issues...we too were sad as we have used walgreens for years and have had to switch now (we haven't had any prescriptions since the change so are still trying to decided between kroger (for the gas points) and target.
Yeah well, I'm sure Walgreens is hurting with all the lost business! I actually tried King Soopers (Our version of Kroger) first for my pharmacy for the same reason (gas points) and they were HORRIBLE! They were rude and took forever! I gave them 3 chances and decided it wasn't worth the gas points or convenience of their drive thru. I even sent them an email and they never responded or seemed to care, so whatever! The pharmacist at Target has been SO nice and is trying hard to help me battle Tricare right now over Kellsey's Synthroid (which is another rant for another day). He already recognizes me, which is partially nice and partially sad! LOL But he's very knowledgeable and the whole staff is very friendly. :) I vote Target!!
Do you like to read? If so, have you ever read the book called, The Memory Keeper's Daughter by Kim Edwards?
I am halfway through it now, and cannot put it down! If you haven't read it yet, I think you might really enjoy it!
I DO like to read. Of course, my books these days consist of bedtime stories chosen from Kennedy's school library! ;) But I have read The Memory Keeper's Daughter (and I've seen the movie, but the book is always better!) and it was great!! Thanks for the recommendation!!
Huh is this hereditary? Can there be certain things that cause a flare up that you should try to avoid? I guess I should just go read that link to get the answers ;). Glad you know what it is and it's not lymes.
No, from what I've read it's not hereditary. There doesn't seem to be anything that causes his flare ups. But when he has one he's miserable... 103 temp, swollen, red ankles, severe pain in his hips and ankles or feet. Sometimes he can barely walk. It can last hours or days. And then it is gone. It can come back in weeks or months. He hasn't had a REALLY bad flare up in awhile, just hip pain but not debilitating, thankfully. His doctor said that lyme's disease usually affects the knees as well and Keeghan has never complained about his knees, but there's always an exception to every rule so he did the titer just to be sure since he had to draw blood anyway.
So glad you finally got some answers for at least one child! And I'm so happy for you that it's not the worst diagnosis, as the dr thought. Hopefully he doesn't have too many or any flare ups at all! Did they say if he'd grow out of it?
Nope, he didn't say... now that I've had some time to read up on this diagnosis and talk to some other parents who have kids with joint issues, I have more questions to ask his doctor. But that shouldn't surprise anyone! haha