I used to laugh at all those paranoid moms. Those moms who had kids allergic to everything, the hovering mom who never let their kid out of sight.Then I became one.
It all started out simple enough. Colic, reflux, and some minor breathing issues. But then we had hours and hours of crying from about 6 weeks on. 5-6 ER visits before he was a year old. Specialists from the Children's hospital...
Because Bubbie was a foster child, I first had to take him to the clinic rather then my pediatrician.
The clinic did not hear my concerns. Thankfully I had a nurse friend who was able to walk me through the medical protocol. With her assistance and some amazing caseworkers who pushed hard we were finally able to get an appointment with a pulmonary specialist at the closest Children's hospital. I was not allowed to go to the hospital of my preference because it would be to far for the biological parents.
However, before our appointment, we had another ER visit with breathing problems. The amazing ER Dr wrote a referral for GI and a pediatrician for us. He also gave us a Dx of reflux. The ER Dr's referrals were an answer to prayer as it finally allowed us to see the additional specialists we needed.
So now we were at the 6 months mark with a foster baby who cried for hours, slept no more then 2 hours at a time, needed special formula and had the dx of asthma (clinic had told us not possible to dx an infant). He also was on meds for reflux, and had possible
FPIES.
I was on the fast track to learning about asthma and food intolerance. I joined several fb support groups and picked the brains of my friends who had kids with similar problems.
The specialists were not exactly helpful, very little testing was done. Everyone was happy to let me just handle it. I had no clue what I was doing. This was a foster child, I was accountable to not only my agency but a rather unforgiving CYS caseworker. I worried that I would miss something important with this Bubbie's health.
I spend many, many nights rocking a crying baby for hours, quite often my tears joined his. During this time I was extremely grateful for several close friends, one who was a nurse with kids who had similar food issues offered valuable advice, the other a friend who had a husband with severe asthma who also had excellent advice,two other friends always willing to drop everything and come help when I felt overwhelmed.
The winter cold that was minor issues for other kids turned into pneumonia, 3 times for my little one. . I was giving breathing treatments around the clock. I was constantly monitoring breathing issues, watching for the signs that I should go to the ER. I was thankful for a neighbor friend who would come in the middle of the night to stay with the other kids.
He even had a ride in an ambulance before he was 2.
We learned some little tricks. Things like warm steam baths with eucalyptus oil and chest PT to loosen the mucus. We found a vapor rub that kept his oxygen levels up. Each ER visit added to our knowledge. Friends recommended meds that worked for their kids. Soon we had quite the variety of meds, all prescribed by different Drs. It was confusing and concerning to me.
Finally as we were further along in the fostercare side of things, I got permission to seek a second opinion at a larger Children's Hospital. We were able to get in to see GI. It was a long day in a large city. The caseworker accompanied me to the long first appointment. We were given hope. The FPIES diagnoses was thrown out.
Fructose Malabsorption and Lactose Intolerance were the new diagnoses after some awful tests!
I found that having my child seen by the specialists during his sick times really helped us. Because Bubbie is a chubby, cute, out going little guy no one really believed me that he had the issues he did.
The answer to a prayer with our allergist came after a long hard night. I debated several times if I should just go to the ER before morning. But I knew having the Dr see his breathing would help more then yet another trip to the ER. This Dr (whom I LOVE!) listened to my sick little boy. She gave me a referral for a Pulmonary Specialist and an ENT. She also gave us a prescription for a very large dose of the much hated steroids. For the first time I felt like someone heard me and understood why I freak out. She saw the labored breathing etc...
This Dr has been a great help. She really helped me figure out what Bubbie is allergic to. She gave me an Epi pen, an allergy emergency plan and an asthma plan. She communicates with GI and nutrition to help us connect the dots between his breathing issues and his eating issues. She went over all his meds. She listened to me on what works and what doesn't. She explained why things worked the way they do. She helped me find the best solutions for his allergy/asthma issues.
Finally at almost 2 years old we have an allergy and asthma plan that works. We still have flare ups. We still have long sleepless nights. But I am confident in my tools. I know that I have a good team just a phone call away. I can check oxygen levels and listen to his lungs at home, I know the danger signs.
My next step is to find answers for the food issues. Watch for a post on that....
