Not much new on the Perthes front... however....

I wish I could post something interesting and new about Simon and his Perthes. However.... we are so consumed with the weather change and how it's affected Simon's eczema and asthma, that the Perthes has taken a back seat (WAY back!!) He had a bad asthma attack 2 weeks ago and had to go on Prednisone.

The Prednisone kept his eczema (and asthma) under control, but once off that, the humidity and seasonal allergies seem to have sent thing south. Poor guy has little scratches all over his body from itching! We tried stopping his Zyrtec because we thought it might be causing his irritability. However we started it up again because his skin was getting so bad and today he does seem alittle better.

It's so easy to forget how these season changes affects his health! We haven't had these types of problems for several months (and I think we innocently think it's gone for good...). Hopefully in a few weeks things will settle down and we will skate through summer. Fall is always bad for him and his asthma.... so we are gearing up this year to increase his daily inhalers (at his doctors suggestion) to see if we can have a peaceful Fall this year. Stay tuned!

Good news, so-so news.....

Simon had his check-in with Orthopedist Dr. Turker today. We ended up having xrays which we didn't expect, but I'm always happy for because I get to see what's happening under the skin!

Good news is that things aren't worse. The growing bone looks aligned with the top of the femur. His ROM is better than before the casts. He is active and not in pain, and not really limping (barely noticeable).

The so-so news is that there is still a deformation so to speak or growth outside of the socket. Dr. Turker states that this will not go away. If it remains stable and does not get worse, and the rest of the bone aligns with the top of the femur, then we probably won't need surgery. These are a lot of ifs and he is cautiously optimistic. However, even he says he cannot say what will happen next. No one knows with Perthes disease what the next xrays will show. Simon's right leg will also probably be slightly shorter than the left and this may cause some problems later on. Still unknown.

So we will just continue onward. Swimming twice a week. Biking as we can. I will do some small form of stretching exercises, as Simon tolerates and does not cause pain. Dr. Turker feels that when a child is in pain from stretching exercises, they will not move freely because of that pain and it will further cause stiffness and possible poor regrowth in the joint. Again, with this illness, there are so many different schools of thought! I often hear parents state they saw three doctors who all told them different things or ways to treat Perthes. And this is true. Even the doctors we saw (three different doctors) confirmed the wide differences in treatment for this illness! So we are going to have faith and trust our doctor and hope we have a positive outcome. He wants to see Simon back in about 2 1/2 months with more xrays so that will be right before school starts in the Fall.

So we will forge ahead with summer plans and enjoy!

Coping with multiple health issues - and enjoying life anyway!

The other day someone at work asked me how Simon was doing - " you know, his allergies and asthma, is everything under control?" Oh those ole things I thought to myself! Oh yes, those are old hat. You must not have heard about the Perthes. That's the "big thing" I was thinking.

But it got me thinking. With each issue Simon has dealt with in his life - each one WAS a big issue at the time - almost all consuming just like the Perthes was the first 6 months after his diagnosis. Each diagnosis or health issue set off a rash of research on symptoms and weeks of worry... does he really have it? What are the symptoms? What is the treatment? What are the alternative or natural treatments? And most of all.... when will he outgrow it (or more like - when will it go away?!). Once we exhausted all our reseach and started just living with the issue - it got easier and we stopped thinking about it so much. But then something else would creep up...

It (really) started the day he got home from the hospital and he was pooping every 15 minutes OR MORE. The advise RN said this was normal - but I knew it wasn't. I was going through boxes of diapers a day! So I started cutting out foods I was eating because I was nursing. No big deal. I did this with my oldest. Couldn't have dairy. I guess I could survive. But things only got worse. The eczema started around 5 weeks old. Then the severe scratching/itching. I had to sleep with him to make sure he didn't cut himself too much from itching. He had to be swaddled until he was over a year old due to the itching. We tried all sorts of medicines - benedryl, atarax, acupuncture, nothing helping much. The color red couldn't even touch his skin. No perfumes, no bounce, no chemicals. I tried to have him food allergy tested at 4 months old, but the doctor thought I was just a nervous mom (even though it was my second!). He couldn't have any type of formula - I even tried pasterizing goats milk myself - he seemed allergic to everything and I was starving - well we both were because I was having (wanting) to nurse him and he seemed to react to everything I ate. We finally got a GREAT PA (physician assistant) allergist who tested Simon for food allergies at 8 months old. Boom - we got it - all dairy, eggs, nuts, peanuts, marginal soy, dogs, cats.... Anyway- food allergy crisis over and under control just in time for the asthma to start at around 15 months old.

It took about 4 months to get the asthma under control. We finally had to accept to start him on a daily inhaler - Qvar. OK, finally the asthma was not an all consuming struggle.

Everyone kept telling us - "Oh, many kids usually outgrow food allergies and asthma around 4 or 5 years old". OK we were thinking..... we can handle this for a few more years.... boring eating and daily inhalers that makes our child hyper. A few years.... anyone can get through that right? Then the chronic ear infections started...... and then tubes. OK, that's fixed.

Just when we thought we were hitting a status quo with only maybe 2 more years of allergies and asthma to go and we'd be home free we were hit with the Perthes. Whoa.... OK . Now were were reading 3-4 years to recover from Perthes (if you are lucky).

OK, I'm starting to wear thin now. Three to four more years of health problems. Gosh, I'm wondering if I can 'wait' that long? 'Wait' for our lives to become 'normal'. 'Wait' until we can really sit back and relax and not worry so much (at least about health issues). 'Wait' until we can start doing fun things we want to do like a normal family (and without emergency kits of motrin, benedryl, epi pens, rice milk and stinky soy cheese) .

Then it hit me. What are we really waiting for? What if he never grows out of these health problems? What if we don't have the best outcome with the Perthes? Who knows what the future will bring for any of us. We have to just forge ahead and have our fun in the moment.

Yes, it's more work for sure and we do have to plan some.... but the fun we have in the end is more than worth it! I've decided that there really isn't much we can't do as a family (besides bounce houses right now!) and there are really so many things to do and see that we are missing out on. The few things we can't do pale in comparison to what we can.

It seemed easier to put thing on hold (trips, outings, even eating out) because it was a lot of work (and sometimes worry) to make accommodations and was out of our comfort zone. We kept thinking - oh, in a few years we can do those things.... it will be easier then.

But you never know what the future brings. THESE could be our easy years. No one really knows. So we are moving on.... a new outlook, a new stage. Today IS our new normal now. No more excuses why we can't/shouldn't do something if we really want to. It's all out there waiting for us. And we are very excited to begin....

First day on a two wheeler! (and no training wheels!)

We took Simon's training wheels off his bike today and he was riding it alone within minutes around the track! We pretty much knew he could as he has been on a balance bike for over a year. However, he is so little for his age, he really can barely put his feet on the ground to stop.... so we are still working on that one. We were going to wait a few months to take them off to give him "bike therapy" of just pedalling around, but at a family outing yesterday he went 90 miles an hour trying to keep up with his older brother and cousin and I thought he was going to tip over for sure and break an arm - or worse! So I thought - those training wheels are coming off - now! He is very proud of himself, and his big brother Sebastian was a great help in cheering him on and "pretending" to race him around the track. I will have to bring the video camera the next trip to the track.

He is of course still limping. A bit more today and I think it is the bike riding. I think I'll email his MD to see if this is adversely affecting his hip joint or if the ROM is just causing inflammation, but helping him in the long run keep his ROM. He is happy, so I'm not over ly worried. But don't want to jeapordize his hip recovery at all!

Our main issue right now is actually his eczema and itching - which is causing him to wake at night. This can be a seasonal thing, but we are always taken off guard on what to do when it flares - maybe once or twice a year. We always have to reassess - are we using the right soap? shampoo? laundry detergent? dish wash detergent? EVERYTHING! Our house is already de-chlorinated and that helps. But he has been swimming more for therapy, so that could also be the culprit. Hard to know. We are going to try him on daily zyrtec - which is for allergies and see if it helps him. But those meds usually just make him over hyper - something we don't need! So we will try it for a week and see what happens.

Alitte stiff after a very active week...

Well Simon is really enjoying his cast free freedom.... and so are we as a family. But maybe alittle too much! Together with the wonderful weather have been many opportunities to be very active outdoors and we have! We put the training wheels on Simon's two wheeler (which we had taken off because he can practically ride it if he were only alittle taller he could stop and get off it). We've read it's great exercise with Perthes to ride a bike. He is thrilled and has been riding 100 miles an hour everywhere. Then he started limping a few days ago. Oops, maybe a bit too much riding. But we don't know if this is really a bad thing (his hip is working, moving in the socket... that is suppose to be good!). But we backed off a wee bit the last few days and his limp is almost not noticeable. He is now able to run which he couldn't do the first 10 days post cast. So that's another workout for the hip. We are just hoping that this is all good and will result in a good outcome, despite the limping. We have been told that the limping is due to inflammation usually and from over exertion - not necessarily that the disease is going south...
So we wait and see. Looking forward to the June 6th appointment for a teeny piece of any information to think things are going well. In the meantime we are enjoying the good pre-summer weather to the MAX and making the most out of everyday and having FUN!

Enjoying our cast free days

It's about 11 days since Simon's casts were removed and you would almost not notice a limp if you didn't know him. It's amazing how each day he gets stronger... much to our relief. He can do the stairs now, but slower than normal (which is usually dangerously fast anyway.... so this is good.. ha!)

We've decided to try and enjoy our summer and not be over obsessed with what's to come with the next few sets of x-rays. What will be will be. We will do the swimming and all the "allowable " activities (staying away for the impact ones) and hope for the best. We are going to try to live our summer as "normal" as possible. Yeah, I'm excited. If the Fall brings bad news, we'll deal with it then. But we are going to think positive here.

In line with this we did an impromptu trip to the beach yesterday and had a blast! Our old thinking would have been.... oh, Simon's legs may be too weak to walk in the sand, it may cause pain... but then I thought I could always carry him, right?. He could still enjoy the ocean view and build sand castles! And that we did! And flew kites! And he was amazing in handling the sand and didn't complain at all. Both boys were so excited to go to the beach (we've only been once since Simon was born) they were ecstatic! It was so fun to see. It really made our weekend.

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!