Wednesday, June 17, 2009

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!

Monday, June 8, 2009

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!

Monday, June 1, 2009

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....