It’s been a little over a month since I provided an update on my daughter’s biomedical treatment. I thank God that the biomedical treatment enabled my daughter to start communication with 1-2 unprompted speech and 3+ scripted words. The communication has enabled her to indicate that she is in pain. Of late, she started to complain, “Hurt mommy”, “Hurt” or “Stomach Hurt”. At every complaint, she will pull my hand towards her stomach and push it in-ward.
Once the intensity of the complaints increased, I decided to email the DAN! Doctor. I thought that I was crazy to bring this to his attention. After all, the primary care pediatricians always disregarded everything that I told them about. Even when over 1 year ago she would poop non stop… they just asked me to use an OTC probiotic. After 3 visits complaining of the same issue, I gave up and thought, “Dang, I sure can nag. Perhaps I am the problem”.
In the email sent to the DAN! Doctor, I indicated that I thought that my daughter possibly has LNH- Lymph nodular hyperplasia. He then referred me to a GI doctor in Northern Virginia. We booked an appointment for the following week. He was out of network with my husband’s insurance plan (a story for another day…arrggghhh), but at least we had a HSA card.
At her first GI visit, I went over numerous events, observation and complaints:
-Antibiotic usage during labor and delivery
-Acid reflux, projectile vomit, colic from birth through 2 years
-no formed stools before biomedical
-Antibiotic prescribed roughly 10 times in under 2 years
-Height and weight plateau between 3-4 years of age
The doctor was perplexed that the pediatrician missed all these red flags. My daughter appeared to have had underlying GI problems since birth. No wonder she cried like someone was hurting her. She would give out blood curdling screams. It had been gut pain all along.
The doctor suggested that we do a quick x-ray. Once we did so, he ran back and advised that she has a lot of poop in her ascending and descending colon as well as a large ball of poop in her sigmoid. The radiologist used the word “severe” and the GI doctor advised that this is serious since he has NEVER seen this particular radiologist use this before. He doesn’t give such a report lightly. So he wrote a prescription for OTC Miralax for a bowel clean out and 1x/day for maintenance.
I thought to myself, all these time…I was there evangelizing to other parents that my daughter has diarrhea and is not constipated (Thank God). What a fool. I wanted to smack myself. How could I have missed all these signs. Why am I just acting now???? HUH?
After the bowel clean out, my daughter’s pain still persisted, so we went for yet another appointment with the GI doctor. He suggested that we do a blood test for Crohns, Colitis, IBS, Celiac ETC. (I never realized how agonizing it was to get blood from a 5 year old child on the spectrum. I mean, it took 5 adults to hold my daughter down.) After the tests come back, he will determine whether we need an endoscopy.
As I write this, I am in bed, lying next to my daughter. I feel guilty, remorseful etc. However, I refuse to wallow in it. All this happened and unfortunately, I had a pediatrician office that was more concerned about their practice size and patient size than about what this mom had inquired about. They gave me push back regarding her delays, tantrums, speech, GI issues etc. Each time, they showed that my daughter was merely a patient ID. Nobody bothered to see the pattern of ear infection after ear infection. Nobody cared. I can’t wallow in all that, it happened. As hard as it is to let it go, I feel that it is much easier for me to do that than wallow in this whole mess.
I am taking it day by day. God Mercies are new every morning. Thank God I wake up to a fresh amount tomorrow. I am held in the hands of the father, and so is my daughter. He won’t let go. I can prophetically say that I know I will look back at this post, and cry. I will say, wow…thank you God for healing my daughter and brining me this far. Thank you for directing me and taking me to greener pastures, where my daughters boundaries are extended to fall into only pleasant places…and where she is free of pain and is HAPPY.