I'll Take 1 Straight Jacket Please

Yesterday morning I took Max for his abdominal ultrasound and I left the appointment feeling a little bit crazier then when we went in.
There was a sense of deja view that left me with a knot in my stomach that I just couldn't untie over the course of the day.
Before we knew that Nick was sick he and I made many trips to the doctor and to the emergency room, symptoms were always over looked or explained away without ever thinking that there was anything sinister brewing inside his body. He was tired, thin and not gaining weight because he was athletic and played a lot of hockey, his lymph nodes were swollen because it was cold & flu season, he had stomach and back aches because he was constipated.... nobody ever said hey lets check this kid for cancer.
Yesterday I got the unnerving feeling that this was happening again, last December we discovered that the nodes in Maxwell's stomach were enlarged and since he was a baby hes had a predominant one in his neck as well. Yesterday was his follow up and wouldn't you know the nodes are still bigger then they should be and low and behold despite having daily bouts of diarrhea the ultrasound tech said that he is constipated as well.  My mind began to race..... tired, thin, slow to gain weight, general unwellness, swollen nodes, constipation..... oh gosh that knot in my stomach just got tighter.
I am hesitant though to trust my instincts because I could simply just be a paranoid mom, that is likely the answer. I have asked over the last year if Max should be monitored for lymphoma and was told that while there is a slightly greater instance of the cancer amongst siblings there was no need to check Max.
They have done blood panels and haven't said that anything was out of the normal range.... that's a good sign. They did an MRI last spring and I don't recall them saying that anything looked abnormal but then again, they missed a great big hole in his heart so should I be overly trusting of them???
Really though what is the likely hood that Max would have a Lactase deficiency, an atrial septal defect and lymphoma..... not likely at all.
I feel as though I am already boarding on the brink of no longer being taken seriously, that I am the mom who is crying wolf all the time but then on the other hand I have yet to be wrong with my suspicions.
Maybe cancer makes you overly sensitive to the disease, that's what the doctors say..... I suppose its better to error on the side of caution no matter how foolish I may appear in my request. He already sees a pediatrician, an allergist, two GI specialists, a cardiologist and now I am requesting that he be seen by an oncologist.....
I wonder if straight jackets come in pink?

I Want To Hear From You

I want to apologize to all of you who read this blog and want to comment but are unable to, I didn't realize that my settings by default would only allow those with a Google account to post.

This has now been changed and everyone is able to comment.

Sincerely;

Cassandra

A Bunch Of Zebras - UPDATE

On August 27th I blogged about the appointment that Maxwell had with our GI doctor at MUMC during which the decision was made that Max's file would be sent to Sick Kids Hospital for a second opinion.
I was told at that time not to expect to hear from anyone anytime soon because the doctor had tested for everything and there really wasn't anything that a new GI Doctor could do for us ( A Bunch Of Zebra's Blog Entry)
Imagine my surprise when twenty-three days later Sick Kids calls and wants to see Maxwell the following day!
My Mom came along since she was on vacation and together the three of us navigated the Go Bus to Toronto where we scarfed down lunch while defending ourselves from pigeons with ninja like reflexes and walked the 30 minutes to the hospital from Union Station.
Sick Kids is a great hospital but I find that it's physical appearance lacks the "comfort" that MUMC seems to have, my thought each time we have been there is that it really needs a makeover :)
After a lengthy wait we were seen by the doctor who came across as nice but very professional.
We discussed everything stemming right back to Max's conception and it actually felt like she was really listening.
The MUMC GI clinic didn't send over the complete file, only what he felt was relevant and even that wasn't the actual detailed paperwork but merely summaries of them.
The doctor excused herself to her office for a short while and came back into the room with a stack of papers, the first words out of her mouth were "I don't want you to be mad but......." - Hmm this cant be good.
Back in December during Max's hospital stay his abdominal ultrasound showed that he had enlarged lymph nodes, I remember this because I had a bit of a panic attack that another of my children had lymphoma.
They reassured me that it was not lymphoma but that was the end of the lymph node discussion. What they didn't tell me is that enlarged lymph nodes in the abdomen is often a symptom of a bowel disease and at the very least should have been followed up with a repeat ultrasound.
The doctor said that all of Maxwell's symptoms sounded like celiac but the paperwork from the MUMC GI Dr said the test was negative so she decided to look at the actual detailed report.... this is where my blood pressure began to rise.
Apparently when a biopsy is done of the intestine they are supposed to take 6-8+ samples from different areas of the tract as its not likely that all of the intestine would be damaged or inflamed. What we discovered is that when they did Maxwell's biopsy they only took two very tiny samples from areas close in proximity because the tract didn't "look" damaged.
If we look back to Max's life at that point its almost certain that looks alone would be deceiving. He was only two years old and had been breast fed for his entire first year, once solids were introduced he vomited more food then he digested.
Pretty much in a nut shell the biopsy to confirm or exclude Celiac Disease cant be considered as the test was done incorrectly.
Now because of Max's heart condition its not safe to repeat the test until the hole is repaired and he can be safely sedated.
We have a beginning plan of action which includes blood work, acid reducing medication to hopefully help with the vomiting and the burning that frequent bathroom trips can cause and we return in January for a check up.
I am tempted to pay a visit to the GI Dr at MUMC and educate him on how poorly he tested for "everything" but I wont..... I will maturely just be thankful that yet again he sent us to a doctor that caught his errors and set us on the right path.   

Tasting The World

Its now the middle of September and I think that we are adapting quite nicely to our new routine. The boys are still enjoying riding the school bus and Riddick waves fast and furiously until they are completely out of sight.
The transition for Riddick hasn't been without some hiccups and there are aspects of his special placement that I didn't think I would need to address. By the end of the first week Riddick had taken another child's juice box and informed me that he gave away his sandwich to his friend.
How is this occurring with supervision I wondered.... well the answer is, it isn't.
As I suspected there is not supervision, there are 3 adults that wander the halls during the break. It still baffles me how we could say on one hand that these children require a special classroom and constant assistance but once the bell rings and the teachers bellies are growling we can suddenly overlook the needs of these few students.
Normally I would be putting up a fuss and demanding better supervision or I might even possibly go to the school each day at lunch to supervise Riddick myself but I am resisting the urge.
Maxwell has also started pre-school and he loves it. I was worried about tears and drama but he was clearly ready and goes with no issues on his 3 scheduled days per week.
Yesterday when I went to pick him up I saw him racing like a maniac up and down the ladder and slide only to discover his heart monitor still tucked into his cubby inside his classroom.
Normally I would be marching into the supervisors office or even contemplating about whether this is a good place for him but I simply reminded his teacher that she needed to take it and use it when they went outside to play (I smiled and everything... are you proud?)
I am working on letting my children branch off and be independent of me, to give them the distance to fail or succeed without the driving mom force behind them.
To let them get a taste of the world without their mom sugarcoating it... this new method is especially true for Nick. He has hit the age where he and I are not always buddies and I don't always like his choices, my wants and desires for him are not necessarily the same that he has for himself. I've spoken to the social worker and forgetting that he is 16 and not a grown man is apparently normal. That dealing with cancer and its aftermath invokes a sense of maturity and its hard to go back to being a kid. I can understand that to a certain degree because as a teen parent I felt the same way, my birth certificate said one age but my brain and body felt something entirely different.
Raising Nick is going to take a creative approach because I need to validate his need for control and to express his ability to make choices while still being cautious that he is indeed only 16.
This is the age that I am finding parents make such individual choices where their kids are concerned. Some let them drive the new car while others completely refuse. Some let them drink in the house while for others alcohol is a complete no-no, Some encourage part time jobs while others insist that the focus be on school, Some allow forms of expression such as piercings and tattoos while others are very much against it.
I found that around 15 parenting a teenager became like an island..... there was no real "popular" method and it seem to be about survival and making it adulthood alive.  I am finding this age a little tricky because none of my peers are there yet, I am the one beating down the path without anyone leading the way and I worry all the time that I am making mistakes. I am finding that my age is very much playing a role in my parenting, my teen years (or lack there of) are very fresh in my mind and I find that I am basing many of my decisions on myself at that age.
I can only do what I think will work for me and my family and thankfully there doesn't seem to be as much judgement towards parents of teens as there is when the kids are younger... there is room to make some mistakes which is good because I promise that there will be many (and thats a hard pill for me to swallow)
I'm working on giving my kids the ability to experience life.... throw open their arms and feel the big world complete with all of the trials and tribulations that it has to offer.
I hope that I make the right choices for them but only time will tell.

A Touch Of Natural

As I sit here updating my blog I have a hot coffee within smelling distance and a smile on my face. Usually I am dissecting the positive from a negative situation but this past week has welcomed some nice positive things for Maxwell. 
After a wait of nine months a space opened up at the preschool that Maxwell attended when he got sick this past winter. I love this school, its the one that both Nick and my younger brother attended as wee ones and their teacher at the time is now the programming director. Its Christian based programming which I like.... there isn't a God pushing attitude but instead they promote virtues and morality - basically teaching with a do unto others attitude. A bonus is that although he will now be in a different classroom then he was last year he will have the same teacher and many of the same friends.
I contacted the cardiologist and got her opinion..... with some modifications in place its ok for Max to attend!
We have ordered his heart monitor, printed out the list of warning signs and precautions and now we just wait for his start date. He is very excited!
The other good thing is that Max had his ECHO at Sick Kids Hospital. Dom came with us because I was not comfortable driving in downtown Toronto and that has not changed. I could honestly feel my anxiety rising in the traffic. Cars everywhere, people running everywhere, bikes weaving in and out of traffic, constant horn blowing, people coming right up to your window asking for money and homeless people sleeping on sidewalks while others literally stepped over them as if they were spat out chewing gum.
The tech that did Maxwell's ECHO was older and clearly experienced. You could tell that this had been her field for a very long time and she had a take no shit attitude.... this test was important and it was getting done tears or no tears.
She seemed taken aback by Max's clear terror and my response of "he's been in and out of the hospital alot" only provided further confusion because she had read that this ASD was only recently discovered. I explained about all the GI stuff, the lactase deficiency and the failure to thrive and her reply surprised me. Without skipping a beat she said doesnt surprise me one bit, kids with an ASD as significant as this often have other medical issues. She explained that the heart is just overworked and the body naturally protects the important stuff like the heart, lungs, brain etc and there are just things that have to get overlooked like the digestion system and the immune system. Her matter of factness got me thinking and so I began to research.... what I was finding was confirmation of what she was saying and yet none of the medical professionals had mentioned it. I decided to contact a "health & wellness adviser" at our doctors office who promotes a more "natural" lifestyle. She explained that the gut naturally has both good and bad bacteria but they often co-exist without much problem but when there is a problem with the immune system (as there is with a heart condition) the bad bacteria can overtake the good bacteria and then things like malabsorption disorders such as anemia, lactose intolerance, irritable bowel syndrome and other issues like gas, bloating, constipation or diarrhea and a general feeling of unwellness can occur.
My inner anti-Jenny McCarthy was still on high alert, surely if this was all common then why wouldn't our GI doctor, dietitian, pediatrician or general practitioner have mentioned this..... seemed a little strange to me but regardless of my doubts I asked what she recommended.
She said to give Maxwell lactase enzymes prior to eating anything that may have come into contact with dairy because its possible that hes being exposed due to cross contamination when having take out and processed foods. She also said to start him on a probiotics twice a day.
What do I have to lose right.... The worst that would happen is nothing and we would be no further ahead so I followed her advice and something surprising happened. After a few days Max seemed to have a happier belly. The diarrhea was gone, the lime green color was gone, the bathroom urgency was gone and so were the complaints about the tummy aches. He was sleeping for longer stretches at night and was crying less in his sleep. I woke one morning so confused because I had slept for 7 straight hours and that hasn't happened in years. While I am still a bit of a doubting Thomas about many natural lifestyle claims my interest has been peeked because for the moment it seems to be working.
There are still many things that Maxwell deals with because of his heart like fatigue, body aches and moodiness (mostly due to not feeling so great) but if he even feels a tiny bit better then I am all for the natural approach.
Just don't expect me to become the next Jenny McCarthy.




Image courtesy of The Changing Buzz
http://thechangingbuzz.com/page/2/