Hayley

Hayley-Strong-5Hayley-Strong-4Hayley-Praying-for

My daughter was 15 yrs 3 months old in Oct 2013 when we found out she has HD in both (right worse than left) AND was a great candidate for PAO (periactebular osteotomy) BUT wait til pain came as could go on for yrs with NO pain (which we prayed & prayed that would be the case as she is not a sports player & never has been just in PE in school).

How we came about discovering she has HD was what I say “by a fluck” as her orthopedic specialist had been treating her like for almost 2 yrs prior to Oct 2013 for a LEFT knee injury/pain from when she was playing basketball in PE she jumped & “landed wrong” she was in braces/no weight bearing/no bending type braces/on crutches and NO PE for almost 2 yrs & still was having “problems/ pain” (it got to the point also he had to refer her to physical therapy to learn to walk AGAIN without braces & crutches—which they did in a 2 hr session—yea I know it sounded funny to us also of having to have a 15 yr old taught to walk again–but she had that weekend off school & Mon was a holiday so the therapist told her she will allow her to use crutches only in school starting Tue for ONLY 2 weeks–well after the session she said I AM GOING TO SCHOOL ON TUE WITH NO CRUTCHES and by golly she DID–I called her therapist & told her & she was even surprised at her determination)but back to her HD part.

We got xrays of her hips as Dr thought the pain might be coming from hips so he got them back & came into room & asked me if she was 1st born (no has 12 yr older brother) was she breech (no) if anyone on either of our sides has hip dysplasia (I said what is that) so he said that is prob a no & said she has hip dysplasia right worse than left & has to send us to Rochester Mayo to the Pediatric Orthopedic Specialist. So got appt there in Oct 2013 & that was when the new doctor came in & told us she is a great candidate for PAO BUT let’s wait til pain shows up as could go for many yrs without pain so that was our plan but with like yrly checkup. She got thru her 16th birthday in Jul 2014 & rest of Summer well. She done good no pain UNTIL she started school in Sep 2014 in which she was walking 7/10 mile to school & walking from class to class (we had just had new school built 1 level not 3-4 level AND NO stairs) from 1 end of building to other & walk back home 7/10 mile.

By Oct 2014 she started getting pain from her right hip area–called her Dr in Mayo & told her—she didn’t think there would be any changes on xrays so didn’t take new ones—so they told her very minimum walking (no to & from school no walking without crutches IN school & had her on very minimum PE) well by Nov 2014 pain started getting worse so they took her out of PE classes for rest of yr & still other restrictions in hopes pain would go down—end of Nov they injected her hip joint with a “test” injection (if it helped relief pain for the 6 hrs it was to then they knew it was in joint from her HD—it did) but it wore off so pain came back AND STILL DID NOT WANT TO DO ANYTHING MORE as they said “it can’t be causing much pain” so I called Shriner’s Hospital in Minneapolis (come to find out her Ortho Spec works there on Tue’s also) we got an appt there within a 1 1/2 weeks time AND it WAS ON A Tue—so got there to register her & all & they asked if we wanted to see our original doctor as she was there today and I said NO we came here for 2nd opinion with a DIFFERENT Dr & we didn’t know she works here also but NO–we got with with a new doctor & she was very thorough (4 hr appts—including NEW xrays/getting orthotics/another injection/AND finding out she also has “knock knees” & in-toeing bad AND flat feet but the whole time there we had to wait to see Dr/etc maybe only 20 mins as rest of time we were doing something with Dr/nurse/etc).

Well the new doctor set up surgery for her Derotation of femur & tibia on right for Apr 14th as she said her HD was mild & hopefully with orthotics AND this surgery pain would go away. Our doctor knew we were there so she called to see how Halo’s pain was in hip & I told her it was still bad. So put her on Naproxyn (well that for some reason gave her headaches/migraines) so the “best” they could do was have her take Tylenol AND Ibuprofen (which by Mar she was taking the max of them which was 4000 mg Tylenol AND 1600 mg of Ibuprofen A DAY) and also was starting to miss ALOT OF SCHOOL cause OF PAIN was getting worse! Well make story not so much longer—her surgery at Shriner’s was cancelled cause in Feb 2015 she had developed tingling/numbness in her right leg/foot and her pain was up to like 6-10/10 on most days (so missing ALOT OF SCHOOL)—took her to local ER & even her Pediatrician til FINALLY in like beginning of Mar (I believe) Shriner’s said let’s get her in to get a EEG (or whatever it is to check nerves) to make sure no nerve damage before we can set up surgery again.

Well had it done & NO nerve damage. So on Mar 18th we went to Mayo in Rochester and saw the Neurologist just to further tell us no nerve damage but still don’t know why numbness/tingling as everything is ok so I just jokingly said well it was prob the pain saying hey u been in so much lately I will just give u more “symptoms” and the Neurologist said yea probably (I laughed in her face cause I could not believe that she agreed with me). The doc had viewed her new/old xrays/mri’s/ct scan (as Shriner’s had also ordered special scans be done back in like Jan & it was done at Mayo so I am sure he seen them also)and her records prior to coming in to talk to us so he said yes she is a great candidate for a PAO and I can do it on May 14 and he took her off crutches she was on since Oct & put her in wheelchair for NO weight bearing just around home very minimum.

She had missed over 100 days of school cause of pain. She had her pre-op done on 13 May & had PAO on 14 May at Methodist started at about 8:38 AM (had to go to a “pre-op” room to put IV in where I got to go back with her then they took her to a “block” area where I couldn’t go as they put in the epidural then take her off to surgery so I went back to waiting room to wait with her dad. It was about a 2 hrs surgery then had to wait til she was in recovery room where I joined her but found out she had to be transferred to St Mary’s Hospital (as she was underweight of less than 100 & they were not set up I guess for peds under 115 lbs) so they made an exception for her dad to come to recovery also when I told them he would be going in ambulance with her & I would get her things in car & transfer over there—they had to wait til like 1:25 pm when they got call from St Mary’s they had a room available for her then had to call for ambulance and then wait til they were available not on calls as calls took precedence over transfers so by 3 pm she got there (thought having her dad there would help her but she had an anxiety attack & thankfully he was in front and EMT was in back with her).

She had to stay in hospital 2 extra days as she wasn’t keeping food/water down they FINALLY got the right pain meds for her (had to go thru diff one’s til they found correct 1–Oxycodone) even if they had her on a med schedule to try stay ahead of pain before they figured which 1 she had 2 horrible painful days after surgery (15 & 16) but day/night of surgery she was great (she had told us like on the 13th “it seems like I am in a dream I can not believe this is going to happen tomorrow” and when we were in the room having IV put in she said “mommy am I dreaming or is this happening” & I told her “no dreams it is real”–in recovery she even asked me “mommy am I dreaming that I had surgery”” I said no sweetheart you had it” and she said “it don’t feel like it cause there is no pain”) She couldn’t even believe it happened the rest of the day as no pain. On 15th & 16th we could not take it seeing her in that pain she was in til they figured out the right meds & dose–we were relieved as she was also.

Since the 17th in hospital til 19th they kept her pain free as she was on a schedule to stay ahead of pain. When we were getting discharged they gave her some Tylenol AND Oxycodone for the 2 hr ride home. Since we got home the 19th we gave her Oxy & Tylenol before bed as pain cause of getting in & out of car & in house & all but also in hopes she could sleep better. She stayed upstairs sleeping in recliner at nights & during days napping. But since the 19th she has had to take MAYBE 6 Tylenol (1000 mg) & MAYBE 6 Oxycodone—which is not bad at all. But since about 26th I think she decided that she wanted to be in her own room AND sleep in her bed as she hadn’t done in about 2 weeks so she has been going down 12 stairs at night & up 12 in mornings with us going down with her to be there/help her get down & get into bed & all as still in crutches & no weight bearing/etc & in morning going down to get her up from bed & up stairs/etc.

She still in ways thinks its a dream as no pain. She has gone through ALOT with this prior to surgery cause of pain then her school was terrible against her & us (we tried to work with them but they didn’t seem to want to work with us). Thankfully she did not have to go back to school when she got home as our doctor said no school til 5 Jun (her school had only til 2 Jun) AND she was to have a tutor in home 5 days a week for 1 hr a day (as he thought she would have to take the narcotics more than she did I guess he was basing it on pre-op pain) well school got a tutor in for 6 hrs for 6 days and then when I asked to extend it so she could catch up more they said no we just did it for those days for her cause we did not have to—I said whatever damn. So now school is over for Summer she is also in better spirits cause no worrying about them (I told her do NOT worry about school during your recovery/Summer). WE ARE SO HAPPY TO HAVE OUR DAUGHTER BACK—I say that cause the pain she had to endure all them months she “was not herself” so down/upset/in pain/crying/etc. It is so good to FINALLY NOT SEE HER IN PAIN and in such a better mood & all! If any questions just ask me I will try answer them!




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  1. Yvette says:

    Were you a “stay at home mom”? Would you take a leave of absence from work if you had to do this over again and was working full time outside of home? How long would be adequate? 1 week for surgery and 2 weeks to follow for recovery? I have some flexibility to work from home computer, and may need to go into the office at times. Office is within 10 minutes from home and husband is in sales / flexiable so he can help somewhat but he is recovering from a 2nd heart surgery so his energy level is low. We have another teen at home who will need to be driven to school and keep her schedule going since 17 yr old son with hip dysp was our “driver” to and from school and extra-curricular.

  2. Megan W says:

    My name is Megan and I had a lot of hip pain starting around age 12. I’m now 16 and I’ve had arthroscopic surgery on both of my hips. I had a torn labrum and impingement in both of my hips. I was wondering if your daughter was ever diagnosed with either of those things? The surgeon repaired those things, but I’ve recently been in a lot of pain. I had my second hip surgery in February of this year. Just when we thought everything was going well, all I did was bend down and my hip dislocated, or popped out of place. I was wondering if hip dysplasia was something that the doctors found easily, or if it was something that was hard to diagnose? What was your daughters level of pain? Did an MRI show that she had hip dysplasia, or was it an X-ray? Please answer me as soon as you can!

  3. Pete W says:

    Megan, in the case of my 12 year old daughter it was a set of x-rays that I asked for during a routine checkup because of her pain. Her doctor saw the poor joint configuration on the x-rays and referred us to a specialist. The specialist did an exam, took another set of x-rays, and we are now in the process of scheduling corrective surgery.

    If you suspect you have undiagnosed HD, I would demand that your medical people consider it. It only takes an x-ray…

  4. Hayley says:

    Yvette;
    Yes I am a stay at home mom. Yes IF I had to do this over again & working I would have taken a leave of absence to help daughter. For me I would have taken off prob more as I would have wanted to be with her while she was in the horrific pain MONTHS BEFORE her surgery as I know she would not have been able to handle it being by herself & even if I couldn’t take it all away when I was home at least I was here for her support like ways & hugs even helped calm her some while in pain so for ME I would have taken 6 months off (if work didn’t like it I would have quit but I am fortunate I was a stay at home mom)but I know some couldn’t “afford” it well we couldn’t really either but we made it work. But if you are thinking of taking absence from work to be with child a few days before surgery (if not in the horrific pain my daughter was in for 3-4 months prior) & be there for recovery–I would say at least I would have wanted to be there during hospitalization (which for her unfortunately was 3 days more than usual) as usually is like 2 days for PAO than to get her thru til could get around house better with lil help prob another 3-4 weeks (as they will need help with getting in & out of bed or wherever they laying/ getting to bathroom/in & out of shower/everything like u use to do when they were babies practically as will be on crutches/walker/cane as she was off by 8-9 weeks post op (but it depends on what Dr says also physical therapist on well doing) plus for her she had 3 sessions of PT a week for like 6 weeks I believe. Since it is your son then there is just so much YOU can do for him as like for us with our daughter ALOT fell on me but her dad was here to help her in & out of chair/bed/etc cause my bad back/arms but like for bathroom/shower/changing I had to help. He will not even be able to bend to put on take off pants for bathroom/shower/change for quit awhile. Just like I said it will be almost like when he was a baby relying on u or dad for everything again. Yes daughter got frustrated after awhile she couldn’t do most by herself as she was use to. So yes if u have the flexibility to do work at home & with hubby there also but since he in recovery might not be able to do much bending/helping son getting up from bed/chair in/out of shower in bathroom. For the shower it was very helpful to have shower bars AND a transfer shower chair (not regular shower chair) transfer is much better & also have a toilet seat riser so don’t need to sit too low & if can have bars by there as they prob would help him getting off/on easier & dad wouldn’t have to help much just make sure someone in there with him in case he slips—daughter almost did a few times but lucky I was there to help her stay up. I prob would do at least 1 week before for pre op & get ready and at least 3-4 months after surgery as like I said he will need ALOT of help getting around. I didn’t think she would need THAT MUCH help before surgery but after we got home realized ALL THe HeLP SHe DID REQUIRE—we even asked surgeon to tell us what we will need for when she gets home as we had to be there like the day before for pre-op & we had to stay til she got out so we wanted it all here before we left home but of course we didn’t get much info—so after we were home we found out ourselves what we needed & I had to call Dr for some prescriptions to get like stool riser/walker/crutches as insurance would pay for them & I think also for transfer seat they paid for & also make sure you have them give u an extra pair of TED stockings for home & take the one’s they have him use in hospital as he will need 2 pairs at least as will need them on like for I think it was 6 weeks for blood clots—they are expensive as we had to go buy ours but hospital said they were going to end us home with an extra pair & never did. It was a hassle to run around & locate items after she was home as I was the 1 whom had to go get things while dad stayed home with her so it was rush for me as I knew what I was looking for but could only be away for so long in case of having to go potty. Please if anymore info I can be of help let me know. Sorry it took so long but did not get notice in email u posted til now. When is your son surgery? During school? If so make sure u have Dr get him on home schooling as he will not be able to attend school for at least 3-4 weeks maybe more as it will be hard for him to get around (& esp if u have stairs to get in & out of house & stairs in school). I think our school said it had to be at least 4 weeks or more before they could do it as required by State I believe.

  5. Hayley says:

    Megan;
    She was not diagnosed with any of them that u were—when FINALLT diagnosed at 15 it was just hip dysplasia in both hips right worse than left. It was just diagnosed with plain x-rays but she did have MRI/catscan later to figure if her pain was from her hip or somewhere else. Sorry to say but the pain she was in for 3-4 months BEFORE her Dr decided it was time to see surgeon & see what he thinks she was in horrific pain I mean it was over the 10 scale—she screamed not cried cause of pain. I sorry if I frightened you. But please do NOT wait til you get in that much pain have your parents REQUEST more x-rays or MRI or catscan or whatever they need to get it diagnosed correctly. I feel bad to this day that we as parents were going by what her Dr was saying & doing for her as we feel we should have requested to see the surgeon way before Dr decided. Her hip xrays came about cause she was delaing with left knee pain for about 2 yrs & her local Orthopedic Specialist did everything he knew for her so he decided to take xrays of her hips thinking pain was coming from there & he was correct as he stunned as with her having hip displaysia at 15 yrs as we did not ever hear of HD before in our life’s. Yes please have your parents demand another set of xrays if needed & to look for hip dysplaysia cause prob if Dr don’t know of HD they prob could overlook it so have them mention specifically HD & then look for anything else it could be. U might need to be referred to a Orthopedic Specialist (prob a Pediatric 1 cause of your age) as even tho the regular Ortho Spec was able to determine HD he had to send her to A Pediatric Orthopedic Specialist to confirm it. Good luck. Please let me know what you find out. I am also so sorry it is late getting back to you as I just received email alert u had posted.

  6. Megan W says:

    Thanks for the reply! I went to a hip dysplasia specialist and he said I don’t have hip dysplasia. Unfortunately, I dislocated my hip again,this time I was just standing. My leg just randomly gave out and my hip dislocated again! My orthopedic surgeon ordered MRI’s and CT scans. Because my hip dislocated again, it caused my labrum to tear completely through and it also caused 2 ligaments to tear completely. The CT scan showed that my femoral head is flat, it’s normally round. The CT also showed I have two fractures. So now I have to have this HUGE surgery where they are going to open me up with a huge incision. They will dislocate my hip and fix everything. I’m gonna need screws and I have to stay in the hospital for a couple days. No weight bearing for 2 months after this surgery. It’s a lot for a 16 year old, that’s for sure! I’m very nervous. I still think I have hip dysplasia though! Why else would my hip pop out so easy? The doctors have NO idea why this has been happening!

  7. Megan W. says:

    Pete W
    Did your daughter have the surgery yet? I went and got another opinion and was diagnosed with hip dysplasia, finally! If she had her surgery, would you mind sharing your experience? I was told I’ll need the PAO surgery in the near future. Ill be 17 on Sunday and I’m still nervous about having such a big surgery. It’ll be my fourth hip surgery and the 3rd one on my left side.

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