Review of our Petrie Cast Experience

Even though the casts are now off, I wanted to share some of the things we experienced for those who are interested! And before I can happily forget the whole experience!

Like I mentioned before, the casts were a surprise to us the day of our appointment for an arthrogram, so we did not have time to do any research OR preparation (for Simon or the family!) so we really did "wing" it at first.... and really most of the time. We did do some google searches on petrie casts and got a few tips from parents who went through it, but there wasn't a lot out there. So here are some of our thoughts and experiences. Oh, it is important to know that Simon did not have any surgical procedure done before the cast was applied and was given full permission to move freely in the cast. It was just meant to help keep his joint in the socket while he moved and help loosen up his ROM (range of motion). So moving around was a must in order for the cast to do it's job!

1. The first few days.... will be different than the rest of the experience. Simon did not know how to move in the cast and was "stuck" pretty much where we put him. This was especially hard at night because he could not reposition himself so we had to do this for him sometimes every hour because he got uncomfortable (so goodbye sleep to the one on duty!). But after several days he started to move around and within a week or so could flip flop himself all around, including at night to sleep anywhere from on his stomach, back, or side, and back again. This was a life saver!





2. Moving around.... at first was scary for us as parents. It looked quite dangerous and if he had a fall he could hit his head or break an arm because he would have no way to brace his fall. I even wondered if he should be wearing a helmut! We were ultra cautious at first and followed right behind him most of the time he was up and around. By the last week though after NO injuries, we started to relax and he roamed freely around the house. These kids CAN get onto furniture , chairs, and attempt stairs, so you do have to know where they are at all times! The younger they are, the more their judgement is going to be way off the mark! Simon was super active in his cast and could practically run in them and loved to "crab" walk 90 miles an hour! The last few days of his cast he started doing this handstand on the couch.... I guess it was fun and he was getting bored!




3. Sleeping and night time.... ok this is a big one and I could probably write a book - not with expert advise, but with stories of frustration and trial and error to get it right! Our biggest problem at night was the itching inside the cast. That may not be an issue for all kids. Simon had eczema as a baby/toddler and has always been a chronic skin itcher.... so he was definately prone to having this problem. We tried benedryl at first, but after a night or two, that did not stop the itching. We then got a prescription - Atarax- from his doctor and that worked well for several days, then started to wear off in it's effectiveness too. What worked more in the end was getting the environment right. This is what worked best:

* He slept on a futon mattress on the floor with Mom in the livingroom. He felt better knowing I was right there and if he woke up and saw me, he was more likely to go back to sleep than if I was sleeping away from him or on another bed. He had pillows all around him to support his leg as he flip flopped around (see picture below)
* We used an ice pack (the soft kind that has gel inside) and he put it on his body to cool down. The hotter he felt, the more he itched - so the ice pack worked well. Also, I had to be sure NOT to cuddle with him! This was hard especially if he was yelling out from the itching! But if I did, he would get hot and MORE itchy, and once he got itchy and started yelling - it took a long time to get things turned around. No cuddling! booooo.
* We had a fan on high (I was freezing, it felt like I was in the arctic) and the cable TV "toddler tunes" channel turned on for background music
* We found it worked best for us to keep him busy and active about an hour past his usual bed time, then get him laying down as quick as possible and tell stories to distract him. We initially had him watch TV to fall asleep because it did help distract him from the awful itching, but sometimes it would just zone him out and make him realize how much he itched, so the other plan actually worked best in the end.





4. Clothes.... who would have thought this would be so complicated? The bar that is cemented between the legs prevents any clothing from being pulled up - including underwear! Simon did wear a diaper for 2 days though he had been potty trained almost a year already. Then he wanted the diaper OFF! So we cut the underwear on the sides and added snaps. It worked, but was kind of a pain. We lucked out with the clothes as Simon could still wear a 3T or even squeeze into a 2T so we were able to go out and buy overall shorts that snapped in the crotch area and they worked perfect. I will be doing some research on how to find these and how big they go up to. I've talked to parents who have had to cut and velcro or put snaps into their own clothes. May be worth having it done by a seamstress if you don't sew and will hold up a lot longer. That's what I will do if we have to do this again and he's outgrown the 3T's.

5. Baths.... sponge baths that is.... we didn't get an A+ for this one. We read a lot how parents would bathe their kids and wash their hair everyday they were in the cast. How they did this I don't know! I was half asleep most of the time and it took a lot of effort to get him bathed (not to mention he did not care if he bathed or not and we practically had to force or bribe him...). We ended up doing it at the kitchen sink. He stood on a wide dining room table chair turned backwards in front of the sink. I wrapped his legs in saran wrap. He would play in the water and make a mess while we quickly washed him down and did a quick hair wash when he'd cooperate putting his head in the sink. We finally did get his hair cut really short the last week in the cast to help with hair washing as well as to cool him down some due to the itching.




6. Transportation... seemed tricky at first, but it wasn't bad. We may have had it easy because Simon is so small. He was able to fit into his brother's booster seat. For a bigger child, we read the booster needs to have arms that retract back to accommodate the leg spread, and ours did that too. We did get a wheelchair with leg extenders the first day. He loved wheeling around in it. But it was alittle bulky carting that thing around to stores and such. We ended up using the red wagon we had to go everywhere and it worked great. I put some heavy beach towels down to make it softer and it fit pretty easy in the back of our minivan. Also, I had control of the wagon, where with the wheelchair he was always getting away from me!!






7. Carrying him around... was definately difficult - and he only weighs 32 pounds (without the casts). We read that you should never lift a child under the arms (like you usually do) because the weight of the casts put too much pressure on their hips. So you have to pick them up in a chair position or like you are cradling a baby. They are really dead weight this way and it is a strain. We tried to avoid lifting him after he could walk around unless we had to to save our backs..... but it was definately necessary part of the time. Also, you are not suppose to lift the legs up by the bar as it can break or come out (and ours did once and we had to glue it back in!)

8. Cast damage... is to be expected! Simon pulled out most of the "cotton padding" out of the top 1 1/2 inches of his cast the first 2 days! Who would have thought to put fun looking "fluffy" cotton like padding in a small child's cast! ha! He then started picking at the top of the cast which made the edges sharp. Of course he then cut his skin one day on it. We went back to the cast room a few times in the 3 1/2 weeks he had the cast on for minor repairs. They were really friendly and said these things happen all the time with small kids and they are always repairing casts. The put mole skin around the top of the cast to make the edges soft, then put the fiberglass casting material over it so he wouldn't peel it off (and he would have!)

9. Last but not least expect bad behavior and crankiness..... At first everyone is understanding of this... you feel bad for what they are going through and they are experiencing pain and frustration.....but after awhile it starts to wear on you! Their schedule is off - everything from no school or playdates, eating whenever and whatever, sleeping is off (if they are even getting much!). Kids thrive on routine and expectations and all of this is WAY off when casts are thrown on unexpectedly! We did our best and got alittle stricter towards the end of the 3 1/2 weeks and started setting more limits and following family rules alittle closer to the norm than at first. We thought he needed to start getting into a routine for his own sanity as well as ours! After the casts came off, things didn't return to normal right away either! He needed to get use to sleeping in his own bed again, and we didn't want him eating in the livingroom watching dragon tales any longer (but this is SO fun mom!) amoungst many other things. After about a week, things are feeling much more on track - whew!