Hip Dysplaysia Support Group #2

[wiggs]

Hi Katfish and welcome to the forum. I found it a very similar way to you and spent many nights reading through posts. It made me feel a lot better and a little less alone in this whole experience. My daughter has had a very recent diagnosis as well. We have now had 5 days in a DB brace and I really feel today that it is starting to get easier. I know what you mean about loosing that intimacy the first day I felt like she was a totally different baby but now we have both settled in to things a bit better and after a massive shopping spree of new pram, car chair, bean bag and clothes I at least feel like I have places to put her and things to do with her.
it is a massive adjustment and very emotionally exhausting to begin with. My advice is to let those feelings out, not to bottle them up. People keep saying to me "Oh she'll grow out of it, it's not forever, it's for the best in the long run" and I agree and know all those things but that doesn't take away the fact that it is hard right now, that it is not how we picture our beautiful babies to be. As my mum put it "Yes, it's not like she has cancer, but it's also not just like she's teething. It is still hard and it is still a big deal. Don't let people disagard your feelings about it" Couldn't agree with her more.
So use this forum to vent, it makes me feel better! Things will get easier and somehow you will work out a new way of connecting her. I think the speed of which it all happens can put us in a spin to all of a sudden they have gone from soft cuddly baby, to baby in a harness or brace and that is difficult.

Mummy Naomi - thanks for your support, things are getting easier now. She has had an 1.5 hour nap (and is still asleep now) which is the best she has done since getting the brace on. So hopefully that means she is settling in to it all. Hope things are going OK for you. Chloe has also had some red marks but took her back to the RCH yesterday to the orthotics dptmt just to get her brace checked and he said it was OK for the moment, is just her super chubby thighs .

[bridee]

Katfish - welcome to the forum. DD1 was in a pavlik harness from 7wks so if you have any questions please feel free to ask me. I've had both my DD treated for hip dysplacia (DD1 in Pavlik Harness, DD2 in DB bar). So between the 2 of them I consider I know a bit about newborns with hip dyplasia.

[crosswig]

Katfish,

Welcome to this forum. I'm glad that you found us. It certainly helped me to have other people is similar situations to share my feelings with. Don't ever be afraid to vent here either now, when your situation is quite new, or later when you are having a bad day. We have all been there (or somewhere similar).

I understand what you are saying about how your baby feels different. In your head you know that the treatment is for the best, that it is only for a short time, yada, yada, yada. In your heart, your baby feels very different now and you have to give yourself a chance to be sad about that.

If you have any questions just ask away. One small thing that I have found with the pavlik harness is that Aldi nappies worked better for us. The tabs are longer than Huggies and softer. Huggies cut into DD2 with her brace.

Crosswig

[Razzberry]

Wiggs - what car seat and pram did you buy?

[Katfish]

Thanks everyone for words of support. Today was our first complete day in the harness, and well, honestly, it was nothing short of miserable. Nat has always been a good sleeper and I think has just gone to sleep successfully now (7pm) for the first time since she woke up at 7am this morning. The harness straps were cutting into her neck and have started to break the skin, so on advice from a friend who is a physio and has worked with these harnesses, we have put a little singlet on underneath the harness to protect her neck. Has anyone needed to do this? Has anyone any other solutions to this. I have rung all the physio departments at the local hospitals and none are open again till Monday, so I have to somehow get through the weekend.

Hmm, I lied, she is crying again... OMG will she EVER sleep again....

[bridee]

Katfish - Sorry but didn't have that problem with DD1, she would be red behind her knees but that was it. Rest assured she will sleep again, within a couple of days she will settled down. Can I ask where you are? Who fitted the harness are you due to go back to have it checked next week? We had an app with our Orthatist 3-4 days after the inital fitting to ensure there was no rubbing and that we were coping.

[Katfish]

Hi Bridee,

I am near Dubbo in Central West NSW. An assistant in the Physio department at the Dubbo Base Hopital fitted it. I don't have an appointment with an Orthatist until Feb next year. I am supposed to go back next week to have it checked, but I don't think I will make it till Thursday, so I will head back Monday. Our friend the physio has just called back to see how we (me!!) are doing, by the sounds of what he said it may not really have been fitted as well as it should have. Why do these things happen over the weekend??

She is asleep now. Natalie also has reflux, so I topped up her reflux medicine and gave her another feed and she seems to have settled. I also wonder if it not two full on days of Drs appointments and travelling and no good day sleeps.

Our other daughter Jill is a terrible sleeper even at two, so I think the combination of two kids not sleeping is maybe catching up on me and that I am not coping very well. Does anyone ever have moments where all you want to say is 'I want my mummy' and go home??? I am having one of those moments...!

[wiggs]

erybery

Car seat - we bought the Safe and Sound Maxi Rider however this is only OK from 6 months, not sure what age your LO is. We have another one of these for our 2.5 year old and have always found it very good. It doesn't have upbuilt sides which is great.

Pram - we took Chloe into our local baby store and tried all the different strollers. We ended up with the babylove Aurora. It was the widest for her legs, lays back fully for naps and was generally just what we were after. I think we paid $280 for it. Tried the maclarens but they were too narrow. I guess it depends on the age of your bub. Our DD is 7 months so her legs obviously go quite wide out.

Good Luck with it all. Have also found a child size bean bag to be really great.

[crosswig]

Katfish, your DD will adjust but it does take a while. My DD took a day or two to get back to her normal sleeping habits. When we first started we put a thinly folded towel under her feet. It wasn't very thick but just enough to support her feet a little bit.

When we got our first pavlik harness it was rough against DD's neck. The physio put a very soft gauze around the neckstrap of the brace and fastened it with tape. When DD went up in brace size the physio had a second hand brace which we borrowed. It was clean but didn't look great (the velcro tends to grab fabric fibres and then pill) but was so much softer.

Cheers,

Crosswig

[Katfish]

Hi All,

Just a little update to first say thank you again for your advise. Today has been the second day of Nat being back to normal with sleeping etc. I did roll up a little towel and put it under her feet and I think that also helped! She seems much more used to it now and so am I! I am still trying to find a comfortable position to feed her in, but I am sure we will just fiddle with that until we get it right!

I guess now I just count down until the first ultrasound and xray and hope that there is improvement!

Thanks

Katfish

[Skyesmama]

Hello everyone,
I am new to this forum, but not new to dealing with DDH. My son was born with it and it was spotted at birth. His right hip was the affected one. He's had two surgeries -one at 3 months old and one in April. He had his last cast off on my birthday June 1st (what a great gift that was).We had a car accident about 2 months ago and the other car hit us on the right rear passenger side- right where my son was asleep in his car seat. At the hospital after the accident ( he didn't have any injuries except a bump on his head) they said he would need a CT scan and that much radiation is not recommended for a child his age. I then also remembered how many X-rays he has already had in his life and he is only 4 yrs. old. We are due to go back very soon for a check-up and he HATES hospitals ,doctors and needles.We had a long long road to go with this situation (he's 4 years old now) and i am looking for some advice with dealing with his emotional side of this. Last night he told me he had a dream that "he "broke" and the doctors could'nt fix him and he was like that for the rest of his life" . I'm wondering if anyone out there is that far into this and has some experience with the best way to support my child regarding his emotions and DDH. LOL thanks

[crosswig]

Katfish - glad to hear things are getting better. Feeding can be a bit tricky. For bottles I put DD into her rocker on the most upright setting and she sits there. For breastfeeds she's resting on my lap (bottom on my leg) and turns her head in for the feed. She was too heavy for me to hold in my arms like they suggested and it hurt my back.

Skyes Mama - welcome to the group. I don't have any advice from experience for you. Our journey has been much easier than yours to date. If it were me (without any personal experience of this) I'd get a referal to a counsellor that specialises in childhood trauma or talk to my specialist and get some ideas. I see you've listed your location as Israel, are these services easily available to you there?

We had our 12 week ultrasound today. Both hips look much better and the dr who checked the ultrasound said that they are in the normal range now. The left hip now has coverage of 68.5% (using the worst picture they could get other photos were in the early 70s). We go to to paed tomorrow to see where we go from here. Fingers crossed the brace comes off.

Crosswig

[MummyNaomi]

it is a massive adjustment and very emotionally exhausting to begin with. My advice is to let those feelings out, not to bottle them up. People keep saying to me "Oh she'll grow out of it, it's not forever, it's for the best in the long run" and I agree and know all those things but that doesn't take away the fact that it is hard right now, that it is not how we picture our beautiful babies to be.

So well said Wiggs! I am soooooo sick of people saying that the next 6-7 months will fly by before I know it etc etc. I DON'T want to wish away this time, its my babies whole life over again, yes I cant wait to get rid of the brace already, but simply I just want to ENJOY my baby without worrying about clothes fitting, his comfort and being able to cuddle him without needing a pillow or some ridiculous position so both of us are comfortable

Welcome Katfish and Skyesmama - Skyesmama my heart goes out to your little boy dreaming he was 'broke', I dont have any advice other than to constantly tell him how loved he is which it sounds like you already do - I dont think any child would ever tire of hearing that. Perhaps your hospital could refer you and him for some emotional support? I dont blame him for hating hospitals, doctors etc, I would be quite happy never to see another - can you reward him with a treat for his bravery when he has appointments perhaps?

We just had Baileys swimming lesson which was great but I am really annoyed as there was another mother getting her child dressed while I was drying Bailey and putting his brace back on etc and she would not stop staring - I was really embarrassed, now I am mad and I wish I'd just turned around and told her to stop starting and being so rude - Grrrrrrrr

[bridee]

Sykesmama - Welcome as others have said I would contact your specialist to see if he can refer you to someone or have any suggestions to help. If you are being treated through a children's hospital they would also be able to help you I'm sure.

Mummynaomi - I never really encounted anyone staring with DD2 as DB bar was always covered with clothes and then generally a blanket over the top coz it was winter (I even had mums in my playgroup that hadn't realised after 5wks DD was in the brace) but with DD1 it was hot and she was in a pavlik harness so you could see brace on her legs. When people starred or asked questions (generally they asked about it rather than starred) I used it as a time to educate and raise awareness. The more people that know about hip dysplacia the better.

[MummyNaomi]

I've just discovered that we need a new car seat - although Bailey (just) fits in ours, after yesterdays 'adjustment' he has been upset in the car and today I discovered why, as it is now too narrow it is pushing his calves in which is pinching his skin near the knee where the cuff is...

Wiggs - what car seat did you buy? I am not ready to turn Bailey around to front facing yet, he is too little imo - but I doubt I am going to find a rear facing seat wide enough. I'll go out tomrrow and see what I can find but any experiences/experience with wider car seats would be appreciated

[wiggs]

Just a quick one tonight, Chloe is unsettled and I am sure she is going to wake up soon.
This week is going better. Chloe seems to have adjusted well to the brace and I am adjusting as well. I can't believe it but she is almost crawling both in the brace and out of it. She just seems so determined and is absoloutly obsessed with it. Keeps moving even in her sleep, which is making for wakeful nights and exhausting days. I remember my DS was like this just before he crawled as well so am hopeful it will be over soon.

Mummy Naomi - I know how you feel. I also didn't want to turn Chloe but unfortunatly there were no other options. We took her to baby bunting and tried all the car seats. The only one that would fit was the Safe and Sound Maxi Rider. It is forward facing but reclines back. It doesn't have built up sides but has arm rests that can be moved up and down. She is really happy in it and falls asleep easily. It has an insert and is very supportive. We also have one for our 2.5 year old and have found it to be great. Hope that helps.

Crosswig - that sounds fantastic. Really hoping for good news for you guys tomorrow. Let us know how you go.

Got to go and finish my cup of tea, it's the first one for the day and I have that 'baby could wake any moment anxiety' thing going on. Hopeing everyone is well will try and post more later in the week

[chazanlow]

I just found this thread doing a google search

We just found out the other day that our 16 week DD has hip dysplacia. It was confirmed on friday and my gp told me to go to the RCH emergency department the next day. They sent me home and told me that they will get back to me by Wednesday at the latest advising me when my appointment with the orthapedic surgeon would be.

Its now Wednesday (just lol!) and I'm freaking out, I just want to know what the treatment will be so I can prepare myself for it! I feel so terrible and like I'm such a hopeless mother because my MCHN picked it up about 2 months ago and told me to go to the doctors and I completely fobbed her off I think I thought if I ignored it, it would go away I never knew how serious the situation was!

I have had issues for months with my DD feeding and she will only breastfeed on the bed if I'm lying down and refuses bottles, at almost 4m she is only just 5kg, I'm petrified of her being put under

I've gone back reading through posts on here to try and guess what her treatment is going to be but I think thats just made me feel more unsure! I dont have the results anymore as the hospital took them off me but I remember it said it was severe in the left hip, something about 38% and 43% and the word subfluxable was used. Can anyone make sense of that?

I'm sorry for my rambling I really needed to get this off my chest and had no idea where else to do so

[~MummaBear~]

Hi girls!

I have a bit of a story, thought it might help you all keep going! My 3yrold DS was diagnosed with Hip dysplaysia about 5 mins after he was born. He was fitted with a brace at 2 days old and he wore it all day every day ( except for bath) for 11 weeks and he was x rayed and cleared!! he had a check up at 12 months old and the Otho said his hips were 100%. My DS didnt wear the brace that i see most babies have worn, he wore a Correctio hip abduction brace.
Apparently these things run in families, I was diagnosed with hip Dysplaysia a couple of weeks after i was born and i ended up neding a plaster cast for 18 months. I dont know much about my personal journey but im all good now too! It seems that the treatment has improved significantly in the last 20 years!
I understand that all of you ladies are going through very different journeys but i thought it would be nice to have this here for any new mummy!