The first three months (yes, I said months!) of the quarantine were brutal. They were filled with uncertainty, fear, pain, anger and an overwhelmingly sense of helplessness. No, this was not because of COVID (although, it did help to heighten it). It was because something was going on with Logan, something we didn’t have an answer for, and we were left to fend for ourselves.
Before navigating the special needs world, I completely trusted in our medical system. I naively thought that they would have an answer for everything, and could “fix” anything with medicine or surgery. But, after our experiences I’m finding that true superheroes are few and far between for kids like Logan.
Let me first say that I treasure the medical professionals, good and bad. They have a gift, and a brain that works much differently than mine, and truly have the ability to impact lives. I am beyond grateful for all of the doctors, nurses, therapists, and specialists that we have come across. Not only have they helped us in many ways, but they have taught me how to be a better advocate for my family.
Logan was having some unusual GI issues in the beginning of March. As I’ve said before, her biggest obstacle with PTHS is gastrointestinal issues. If she is upset about anything, it is usually related to her GI system. We see a specialist for this, and have always been told we were doing everything right, that we were maintaining everything better than expected. Well, something just wasn’t right, and we had to fight like hell to help Logan.
So, Logan had started to act out and become aggressive…biting, scratching, hitting…not her normal sweet self at all. I even had to get her from school a few times because she was just not bouncing back from anything, and would just cry. Her stomach also became extremely bloated, like a balloon about to pop. You could hear her tummy rumbling from across the room. It sounded like a water cooler releasing a big air bubble. This was not normal for her.
I contacted her GI doctor after I gathered information from the other Pitt parents who had been through similar or identical situations. See, with a syndrome so rare many doctors simply do not know the best treatment, or do not know what to even do. Some research it, but most rely on the parents to do so. I don’t mind this, because it makes me feel like we are doing the right thing, but it is hard and just another thing to add to our never ending plate. So, I suggested we try a certain drug because I think it is some sort of bacterial/yeast overgrowth. He agrees, but suggests a different medicine that she may respond to better. I agree because I have trusted his advice in the past.
Well, three days in I take her off of it. She wasn’t eating or drinking, or sleeping. She was nauseous (I know this because of the face she makes). The other parents asked why he put her on that and to demand the original drug that I suggested. Now I’m kicking myself that I wasn’t firm about this. I send a message through the patient portal (I’ve learned to get everything in writing, so I no longer leave voicemails) and wait for the response. The next day the nurse responds, “I’ve never heard of this drug. What is it?”. And that was it. No reassurance that she will look into it, or pass it along to the doctor. It was up to me to educate her on it. So I did. And nothing in response…
Then, the world shut down. COVID had hit. Logan seemed to be doing better off of the medicine, and I thought it was best for her to get it out of her system before we move on to the other one. By that time the nurse would surely get back to me.
Things were getting so bad. Every 20 minutes she was having these fits of rage. Screaming…banging her head against anything she could find, biting, scratching till she drew blood (my arms are filled with scars now). She was acting like a crazed lunatic, and I did not recognize her at all. If we were living in the old days she would have had an exorcism for sure. Luckily we held on to some arm braces from a previous surgery (so she wouldn’t try to take out her IV) and used those as restraints. It was exhausting. It was scary.
I was doing every trick I could think of, every remedy possible. I was blowing up the message boards on all PTHS and special needs sites. I was trying to shield the boys from this madness, and was trying to keep everyone quiet so David could talk his clients off the ledge of the crashing stock market. I had no help. My parents begged me to let them come over and help, but there was no way I was going to possibly expose them to COVID if we were carrying it. We were on our own.
I contacted our developmental pediatrician (yes, this is a thing, but I am not sure why) and said we were desperate. Was it time to put her on behavioral meds? My exhausted self was begging for this relief, but I knew we needed to figure out why all of a sudden she was acting like this. After filling her in on all that was happening she agreed that GI needed to address this, but said she would prescribe something for her aggression. I have yet to fill that prescription.
This is now week three of quarantine, and still no response from GI. During that time I was doing more research and came across possible things like food intolerance (a test could be done for this) or SIBO (Small Intestinal Bacterial Overgrowth). And the drug that kept popping up was the one that was suggested by the parents the first time. I again message the nurses with all of this information. The next day I get a message from the hospital nutritionist asking about Logan’s diet. No mention of the drug, and the email had a very relaxed tone to it. I already knew what she was getting at, so I immediately responded that we have done elimination diets, etc. etc. I asked her about the food test and where we could get it done and when. She responded stating that no such test exists. I quickly find the name of it and tell her. Silence. I respond stating that while I appreciate all that they are doing, my situation needs to be met with a sense of urgency, and this chit chatting that has been going on with the whole team needs to end. We need a plan. Now.
I finally get a call from the head nurse, who informs me that our doctor is on vacation. In the middle of a pandemic. And cannot be reached. I know he wasn’t traveling, and was tempted to find out his address and go speak to him myself. She spoke to the on call doctor, who looked at her x-rays from LAST NOVEMBER, and was certain it was just gas, and that she was swallowing too much air. He refused to prescribe this medicine. He did not think that excessive blowouts was a cause for concern. Or that she wasn’t eating or drinking. Or sleeping. It was just too much air! Simple as that. Did I mention that this is a big name hospital?! And it is not the team we root for.
I was livid. David was beyond livid. He wrote emails to the nurses, begging for help. The head nurse called me, and it began civil. I went into such detail about what was happening, who we had spoken to, everything. I begged for this medicine, and begged her to contact our GI on vacation. Do you know what she said? “Perhaps it seems like she is having a hard time because you have been home with her constantly for so long. Maybe it is just hard on you?” I lost it. I’m not even sure what I said, but it was not nice.
I hung up and called our developmental pediatrician and asked her if she could prescribe what was needed. I was feeling a sense of relief when she called me back. She said no. No. She wanted to respect the decision by the GI. You have got to be kidding. I pleaded with her. Still no. Asked her what other options we had. She had none. Just wait. I canceled our follow up. What is the point?!
Finally our GI came back from vacation, and also refused to prescribe the medicine. But, he wanted a different one. I firmly said no. He then said the other option would be surgery. He wanted to place a tube similar to a g-tube that would be purely for venting out this excess air. We had talked about tubes in the past, and he knew it was the last resort, and agreed that it should be the last resort. That was his way of telling us he was done with us. I challenged him, and he did not care for it. Our relationship with him was done.
Since our specialists were not helping, I decided to call our pediatrician. He immediately set up a teleconference with David and I. We filled him in on everything…everything! He said he trusted my findings and prescribed the drug. After over a month, it was finally happening. And, he thought we should go back on reflux medicine, because some of the symptoms were popping up with this. I hadn’t even thought of this. Why didn’t our specialist think of this?! He also ordered stool tests that I asked for. Specific names that I would have not even known about if it weren’t for the other moms guiding me along.
It was that easy. Why hadn’t I gone to him before? Why did I think I could trust and get help from SPECIALISTS?! It’s absurd. I am so thankful for our pediatrician, and for him not having an ego that stops someone from getting help. Before Logan was diagnosed he sat with me and looked through his medical book for answers. When the diagnosis came in he said he knew nothing about the syndrome, but would help us any way he could. And he did just that. And, he referred us to a new GI, at the school we root for 😉
Within a day or so of being on the reflux medicine things started to improve. After a day on the requested medicine she was improving. Her outbursts were less frequent, her belly was shrinking. She was eating. Drinking. SLEEPING. We were breathing for the first time in months. My arms were healing. She was smiling.
The one good things about COVID is the ability to get in to see new doctors faster. Now that everything is over the phone or video, we were able to see the new GI in just one day. One day!!!! He was exactly what we were hoping for. He agreed that she was on the right medication, but that we would have to do two more rounds of it because it sounded like it was SIBO we were dealing with. He explained exactly what that was to us, and how this treatment would help. He said it may not cure it, but it would ease her symptoms. I told him I was also set to talk to a holistic doctor, and he was on board with that. If I had said that to the dud we were with, he would have laughed in my face and told me that was a bunch of quackery.
Now this holistic doctor is a dream come true. I found her through another special needs mom I’m friends with. See…moms know it all. There is no better resource than a mother who has been through your situation. I should have thought to ask her in the first place. Anyway, we set up a plan for Logan which included digestive enzymes, a new probiotic, swapping her pear juice with papaya juice (such a BIG difference!), and adding some holistic remedies for bloating and tummy troubles. Within a week her stomach was flat, it was quiet, and she wasn’t lashing out. Maybe a few times a week. It was a miracle.
We are also working on her diet. She has been eating pretty much the same thing for way too long, so it’s almost certain she had developed an intolerance to something (ahem, hospital nutritionist??). Our happy, sweet Logan is back, and her gut has never been happier.
Here we are…August 12th. Six months after our first contact with GI. It took this long to help her get back to herself. I am disgusted with the team we were once a part of, and am now realizing through other parents that this was not the best team after all. Apparently, once this GI doctor’s ego is hurt he cuts you off. You better believe I am telling other parents about our experiences with him, but I’m not mentioning his name here. I’d be happy to message anyone who wants to know so I can spare you the turmoil he put us through. And I will give you the name of the delightful nurse, too.
And yes, COVID has played a nasty part in all of this. This SIBO turned her world upside down, but the way the world shut down and shut HER out just kept throwing punches at her. At all of us.
I’d like to say that I came out of this stronger, more knowledgeable about the medical world, more inclined to trust my gut over someone with a degree or two. But, honestly, I’m exhausted. I’m tired of fighting for a simpler life for all of us. It shouldn’t be this hard to get help. And the sad thing is, I know I have it way easier than most. I know there are moms out there who are spending years fighting the specialists, fighting insurance companies, fighting everything that comes in the way of their child’s health and well being. And my heart breaks for them during this quarantine. The world has shut us all off, and I hope to God that these parents and kids are okay.
I’m ending this post with Logan beside me. We are sitting on the floor in the toy room. Jango (our 8 month old 66lb puppy) is half on her lap, letting her hand explore his teeth. She’s watching “Tangled” for the umpteenth time and couldn’t be happier. She is laughing. Smiling. What more could I ask for.