I have to say I am tired and heartbroken that once again a Christmas passed with Connor feeling miserable and again no answers from either the Pediatric Clinic in CSprings nor the Family Practice here in Woodland Park. I am a bit angry about myself because just like three years ago I put hope and confidence in the medical field here in our immediate area that truly has no idea or knowledge how to treat Connor.
On each of the visits Connor coughed the whole time, just as he does at home and on the go, but since his lungs sound clear and he has no high fever he gets ignored.
At the first visit he got Allergy medication: results.... None.
The second visit at another doctor he got X-rays of his lungs taken and they looked clear, even though we were told kids lung X-rays can be harder to read. On this visit he got nothing prescribed but a pat on the back.
Today I took him in again and this time we got to see a very young PA who listened to him cough and actually said to him to not make so much noise when breathing as he could not listen well to his lungs. Poor Connor really tried to pull himself together.
On this visit we were told he might have Acid Reflux Cough. Now I handed the PA a list of Connors medication he is on and he kind of glanced at it fast and then handed it back to me. Now on this list was the Prevacid Connor takes daily. Well, he handed us off with a script for Nexium.
Once we left I thought to myself that to me they both are in the same category, so why would he think that Nexium would work better then the Prevacid OR even worse, he never read the fact that Connor was on Prevacid already and if I had been a novice without the amazing network of friends who give me advice and support I could have made the horrid mistake and given him both!!!
Well, we do not have the Nexium yet as we found out after waiting for 45 minutes at Walgreens that they do not have this prescription and need to order it first.
I got home and posted to my wonderful JM Family who by a huge margin keep telling me they think he has a reaction to the Methrotrexate (Chemo) and that is causing his cough. If you google Methrotrexate Cough you can read about it. Also they all told me to NOT give Connor both, the Prevacid and Nexium.
Now in the meantime I had also emailed our beloved Dr. Soep, who has been our Rock as she even responded to my questions and concerns on Christmas Day! Without her support I would think I was crazy. She told me that I can try the Nexium instead of the Prevacid if I like but that she is still not convinced this is the cause of it all. She is just like me very focused on the Appointment on Jan 6th with Dr. Stillwell, the Pulmonologist.
I feel bad for taking Connor now to three Doctor visits here that really gave him no relieve or even seemed to take him or me serious.
Connor might just be 'coughing' but he has been coughing now since the end of October and going into continuous coughing now for the last three weeks.
I truly can not tell you enough how the one thing that keeps me from screaming or crying is the huge support and concern I get from very close friends that are like family, and also from my beloved JM Family. They are more on the spot then the medical professional I have dealt with the last three weeks.
Truly the only people I seem to be able to rely on is Dr. Soep and the advice I get from all the mom's who have sick kids that have diseases with no cure.
Living with a child that has a rare disease really makes you feel like you are in a country, surrounded by masses of people that do not speak your language and when you meet just one voice that speaks your language you want to cry and hug them. It can be lonely if it wasn't for those postings of support.
I truly understand the meaning that you can't choose your family but you can choose your friends and make them your family. I am lucky to have a wonderful support and show of concern from my family in Germany. It is hard to fully explain it all to them but they call and they email me and ask question. Sadly that does not count for others who do not seem to care or are more concerned it I make a political statement and respond to that but don't have a minute to ask me how Connor is doing or how I am doing.
Well we all have our priorities, my first one is to keep our son alive and watch him grow to be a man and out live me. If I sound dramatic to some of you then I invite you to join my world. Go to www.cureJM.org and educate yourself. Look at the pictures of kids that died way to early and shouldn't have. If you care for Connor and his battle then show him and tell him. No one is asking you for money but if giving money to Charity is part of your being then why not support the one close to a person you know and that you claim to love? CureJM is a nonprofit run solely by volunteers. Every penny/dollar that goes in goes towards Research. We need a Cure, anything else is just us, Ron, Connor, Alexander and I holding our breaths and hoping for Connor to be okay, as well as all the fellow JM children who are fighting this fight!
So, no..... In my gut I feel this is not just a simple cough.... Just like three years ago I knew my son did not have Mono and they send us home with him and a pat on my shoulder to give him Motrin for his pain. Most of you know that this 'Mono' turned out to be JDM that hospitalized him for right weeks, almost cost him his life, had him relearn to talk and walk. Three years later he is still in Physical Therapy .... So no I don't think we are over reacting!
R A C A
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