Thursday, 26 July 2012
Each Sunday our family sits down and enjoys a tummy busting dinner and this past Sunday was no different except our desert was interrupted with a phone call from the allergist/pediatrician - yep you heard that right, a doctor called me from his home on a Sunday evening.
My heart leaped in my throat but he was just calling to check in on Maxwell, make sure that he hadn't had any cardiac problems and to see if I had heard anything about the ECG results, which at that point I hadn't.
I waited until Tuesday and then called the cardiology dept to enquire about the results, I was told that they weren't planning on sending the results to any of the other physicians until after our appointment because they didn't want "wires crossed" but that the pediatrician can personally call if he is concerned.
Tuesday evening my phone rings again and its the pediatrician, he requested the results and instead of being given the actual results he was faxed a hand written note from the cardiologist.... not exactly what we wanted but better then what we'd had.
We knew that the results would be abnormal, you can listen to Maxwell and know that something isn't right so the results were not unexpected.
The ECG showed that Maxwell has something called Right Bundle Branch Block which means that the right ventricle of his heart isn't receiving the full electrical impulse and therefore isn't contracting simultaneously with the left ventricle the way that a normal functioning heart does.
This alone isn't the diagnosis but its instead another symptom, some people live with RBBB never knowing they have it or having any problems but given that Maxwell also has Cardiomegaly (enlarged heart) its more likely an indication of an underlying heart condition.
We are being followed very closely by an awesome team of doctors who have partnered together to make sure that Max stays safe. We see the pediatrician on Monday and then the following week we go to cardiology, our wait for an appointment was a short one given the medical norm's in Ontario and even so we are squeezing in check ups - It may have taken 3 years and a fresh set of eyes to look outside the box where Max's health is concerned but I cant complain about our medical team, they are stepping up to the plate in a big way, they are monitoring closely, checking in on a personal level and are not trying to sugar coat things for me which as a parent frequently involved with the medical system I appreciate. The doctor allows me to be fearful, ask questions, and reassures me that Max is in good hands.... no matter the results, he is quick to point out "good" things like Max being developmentally appropriate and that so far there haven't been any spontaneous cardiac issues.
A great doctor can make all the difference even when things are not looking fantastic!
Monday, 16 July 2012
Its funny how sometimes in life you find answers in the strangest of places, places that you would never think would lead you in the area that it did.
We have been managing "issues" with Max since birth.... random problems that didn't seem to have any connection what so ever, we have seen pediatricians, GI, general physicians, neurologists, dietitians, ears, nose and throat and much more - yet its a simple appointment for a skin scratch test with an allergist that opens the door to issues that we didn't even know existed.
After seeing Maxwell's chest and diagnosing him with pectus carinatum and noticing that his "innocent" heart murmur was rather loud he sent him for an X-ray and ECG - we got the results of the X-ray today and it showed that Maxwell's heart is enlarged.
This likely accounts for a lot of the things that Max has experienced in his three short years. The "seizure" that he experienced as an infant possibly wasn't even a seizure at all, it could have been a cardiac arrhythmia that went unnoticed. And his growth difficulties is likely because his body burns too many calories simply functioning day to day not leaving enough to become fat and muscle.
The doctor has now ordered an ECHO and has changed our cardiology consult to urgent so we should be hearing from someone soon.
Unfortunately we have been given instructions to change how Max lives.... he was supposed to start daycare this Thursday but that cannot happen now because he isn't allowed to be outside in the heat or to be overtly physically active. He is not allowed to jump into the pool anymore (which is one of his most favourite things to do), steal sips of coke from Daddy's cup or have any medicine should he get sick. He has also again been given the label of "failure to thrive" because the likelihood is that he wont gain weight. He must now drink four cans of Pedisure each day which is rather expensive (a case will last 3 days).
I am angry that he has been poked and prodded, held down with fluid poured down his throat, been sedated multiple times, been forced to fast or eat and the list goes on and on but yet a simple X-ray could have found this long ago.... this has likely been there since before birth.
On the other hand this is another confirmation that you should always follow your mom intuition..... not very often that its wrong. I knew that something was wrong, but I have to admit that I am surprised at the direction that things have taken.
Saturday, 14 July 2012
If your kids are anything like mine then the sight of a Tim Hortons is enough to send them into a frenzy but since Maxwell cant have dairy this is a problem because there isn't one single donut there that doesn't have a milk product baked into it.
Often craving a Timbit he would cry at the thought of not having one and as his Mom I would feel like a real sh*t for passing through the drive thru for a caffeine fix with him pouting in his car seat.
Thats when it dawned on me..... I have always made "homemade donuts" but since Max's diagnosis I hadnt because I just assumed there was milk in it - colour me surprised, there is NOT!
Now I just freeze a batch and toss some in a baggie to keep in the van for those impromptu Timmies stops - problem solved.
This recipe is so versatile that I thought that I would share, whether your child has a dairy allergy or not these are a simple tasty treat that are fast and really yummy!
You will need:
1 (or more depending on how many you want to make) tubes of **Pillsbury Country Biscuits
1 bowl of 3/4 sugar & 1/4 cinnamon
Oil (your choice of what type) simmering on low/medium
Pop tube open and cut each biscuit into quarters (4)
Roll each piece into a small ball
Carefully drop 6-8 into the oil (Caution - they cook very fast so dont put too many in at once)
Gently move them in the oil to ensure an even light brown color
Remove from oil and put in the sugar mix
Generously cover the donuts and then remove to cool
Continue these directions with the remainder of the batch.
Different things to do....
If you want to make traditional donuts, instead of cutting the biscuits just rip a small hole in the center of each biscuit and stretch them out a bit
Cutting the biscuits in half instead of quarters will create larger balls much better for adults
For a tasty adult treat (contains dairy) you can make a glaze of confectioners sugar and baileys to drizzle over the donuts.
The creative options are endless which is why these are one of my favorite things to make.
** Pillsbury Country Biscuit Ingredients
Enriched wheat flour, water, soybean oil shortening, dextrose, sugar, salt, baking soda, sodium acid pyrophosphate, soybean oil, sodium aluminum phosphate, potassium sorbate, natural & artificial flavour, calcium chloride
Contains: wheat; May contain milk ingredients
Friday, 13 July 2012
It started innocently enough early yesterday afternoon while shopping for some new clothes for Maxwell, across the store my eyes became glued to a beautiful toddler sized yellow retro ruffle dress that resembled what I always imagined a daughter of mine wearing.
I debated about buying it just to have, to put away as a wish for the future - I left the store with the notion that I would return for the dress after Maxwell's appointment with the allergist.
The intent of the appointment for Maxwell was to do a scratch test and see if Max tested positive for a cow milk protein allergy. His test was negative but within a few hours his face broke out in blisters so as instructed we need to return on Monday. The intended test was actually the most minor part of our visit, the doctor checked out Maxwell and me and asked random questions such as is Maxwell clingy, accident prone, prone to tiredness, does he get bluish tinged lips and he asked me to show him a picture of Dom.
This seemed very strange to me given that he was an allergist but I would later find out that he is also a pediatrician.
We went over all of Maxwell's medical history stemming all the way back to my anatomy scan during pregnancy where I got called back in because they needed a second look at his heart. We discussed his unexplained seizure episode which landed him in the hospital as an infant, his hearing loss, his gastrointestinal problems, his lactase deficiency, his failure to thrive diagnosis and subsequent weight issues.
He went through all of Maxwell's tests and proceedures and he was very annoyed to see that he didnt have a chest x-ray or ECG while in the hospital this past winter.
He went on to explain that Maxwell has a chest deformity called Pectus Carinatum and a heart murmur, I had always thought that Maxwell's chest stuck out simply because he was thin.... apparently I was wrong, this deformity gets worse with age and at the least requires bracing and at its worst corrective surgery.
He went on to explain that until now multiple doctors have all been exploring Maxwell's symptoms individually but perhaps they should be considered together and possible syndromes should be investigated.
First thing this morning we went to the hospital for an X-ray and an ECG along with some other heart related test. I confirmed that a referal was sent to pediatric cardiology and the doctor sent a referal to genetics (which will take months). At the end of the month at Max's weight check up we will be discussing heading over to orthotics to get fitted for a chest brace.
You see.... again this is clearly not the time for a pregnancy, not only will Maxwell have some medical issues to deal with (in conjuction with the issues faced by Kurt, Riddick and Nick) but if he indeed has a genetic syndrome then we will have to do genetic testing on our frozen embryos prior to transfer.
Its always something around here.........