Category: Here and now
It has been over four months since I last blogged about my daughter and her sudden illness. I think it’s time for an update.
When we last left off, we were a month into the hell that was her post infection irritable bowel syndrome. Before this happened to her, when I would hear ‘IBS’ I would picture someone with a stomach ache. I did not know just how bad it could get. You cannot know until you are living in the middle of it.
She lived in pain all the time. We had a scale we would refer to – “What’s your pain on a 1 – 10?” Ten being the worst. We never went below a five. Five we considered ‘good enough & manageable’ even though she would still audibly moan out loud. Seven to eight was gut pain mixed with hunger, how ironic. Nine to ten, that was after meals or in the middle of the night, the worst. From the time she woke up until she went to bed (and when I say ‘went to bed’ I rarely mean ‘sleep’ since her pain would keep her from sleeping) and even when she did sleep, she would thrash about moaning in pain. It was at different levels throughout the day. She would wake up moaning. And her pain would elevate after every meal. Her belly would puff out as if she were pregnant, horrible noises would start up from her midsection, and her howling would ramp up. We were at a loss for what to do. She didn’t attend school for two months. She lost weight. She looked horrible. We would end our day working to get out of her intestines what we worked hard to get into her. It got ugly. You don’t need more details than that to get the idea.
We spent time at Children’s Hospital in Boston, and we saw a doctor in the children’s GI department at Mass General. The conclusion was all the same – whatever happened had left her with a damaged small intestine, and that we needed to work with the pain management team to teach her how to live on a daily basis in pain. Yes, she is in pain, but ‘the pain won’t hurt her further, it just exists’. Her pain is considered ‘functional’- characterized by chronic pain, with no physical explanation or findings – no structural or mechanical causes can be found. Try and comprehend that – she needs to learn how to live her daily ‘normal’ life around her pain. This is her life now? Daily pain? I would go out to my car to cry. I would scream. I would call my mom and we would cry and scream together. Then I would pull my shit together and go back inside. I think I cried twice in front of my daughter. She couldn’t bear it. She said “As long as I don’t see you cry, I still believe I will someday get better. I lose hope when I see you cry”.
She did have an endoscopy that ruled out celiacs disease, ulcers, or other possible stomach issues. She was tested for parasites, twice – negative. We also looked into a small intestine bacteria overgrowth – SIBO. While her tests for that came back negative (and she didn’t respond to serious antibiotics for it like Flagyl or Rifaximin – a jaw dropping $440 with insurance for a two week course!) her symptoms closely linked to that of SIBO. Constant GI distress that elevated after eating, especially when eating more complex carbs or sugars.
She had to start seeing a pediatric pain psychologist on a regular basis. She learned how to breathe into her pain, to visualize positive thoughts to minimize the pain. She went to acupuncture offered at Children’s Hospital. She got a TENS unit to wear around her waist. It
TENS Unit
is a bit bigger than a box of cigarettes with ‘leads’ that attach to the area of discomfort. It administers electrical nerve stimulation that is supposed to minimize the pain. For the record, she didn’t find it helpful at all, though many people do. I even tried it on my lower back since I have back pain. (Her physical therapist said I could use it as well.) I didn’t like it either. They emphasized ‘distraction’ as a method of pain control, and we knew that to be our best option. When she was busy, she could retrain her focus. The worst was at night when the lights went out and there were no distractions. Most of the time she would try to sleep, but she couldn’t, so I would get up with her and we would watch television. There was always a repeat of America’s Funniest Home videos, and we could laugh out loud at it. I would scour the net for information about her condition during those all night marathon tv/reading/iPod/computer time sessions.
I asked the GI doctors at Children’s Hospital what I should feed her, since it seemed as though every thing she ate just brought on more pain. One doctor had suggested a FODMAP diet. It is a list of foods to avoid that can cause more gas & distention in the small intestine, resulting in more pain. You avoid foods high on the list – which are usually more complicated carbs – and opt for the lower, easier to digest carbs. I gave it a good try but found it ineffective for us. It isn’t that it’s such a tough diet to follow, but if you are a picky eater to begin with, as she was – it can be a challenge. When we met with the pain management team, I brought up the whole food issue with the head doctor and how we were trying the FODMAP diet. He waved his hand dismissively and said “It is too difficult to try and follow any specific diet. Just feed her what she wants so she will feel like a normal ten year old.”
What?! My daughter moans in pain all day long. When I feed her something that is supposedly less stressful on her gut, like on the FODMAP list, she still deals with pain, clutching her belly as it bloats, howling out like an animal. If I feed her what she wants, her ‘normal’ diet – I have watched her pain elevate to a point where she is standing up, fists clenched and screaming through clenched teeth. For hours. You have got to be joking – feed her what she wants so she feels normal? Normal is NOT missing over two months of school, losing weight, being in pain all the time.
So…what do I feed her? She was losing weight, and she didn’t have weight to lose in the first place. I was getting alarmed at how thin she would look when I would see her getting into the bath…
Coming up…part two of ‘My Daughter’s Recovery”.
Many of you have asked about my 10 year old daughter and her health.
On November 30th, about an hour after dinner, she started complaining that her stomach hurt. From there it escalated into full blown wailing and crying. Holding her belly, screaming that her belly hurt. Her stomach was puffed out. She was like this for most of the night, then felt better by lunchtime. We chalked it up to perhaps constipation (not something she has ever struggled with, but there had been more bagels in her diet in November than ever before, so – who knows?)
However, two days later it all started up again and never stopped. She couldn’t go to school, she was barely sleeping. When she did sleep, she would toss & turn, and moan.
She wasn’t sick before all this began in any way. Nor during this time has she ever spiked a fever, had nausea, vomiting, diarrhea, or a rash of any sort. She isn’t a sickly kid in general. And she still had an appetite. Eating food would bring on more pain, though, so we had to adjust how and when she ate.
We went to the emergency room FIVE times. Yes, five times. With two overnight stays. Not knowing what was happening, wondering if her appendix were leaking toxic fluid into her system. A twist in her bowel? A telescoping of intestines? Obstruction? Diverticulitis?
All tests, ultrasounds, and x-rays came back normal. Parasite test, negative. (they are doing that one over again, though) No one could find what was wrong with her. The GI specialists at Children’s Hospital in Boston best guess? A virus came and went with no outward symptoms but left her GI system weak and unable to function properly. Post infection IBS is the name they gave it.
What can you do for such acute pain? Well, you can’t give pain meds. True pain meds slow down bowel function. Anti-spasmodics do not seem to do much. We do quite of bit of intervention for her to keep things, um, moving for her. How much fun is that for a 10 year old girl? Answer: not much! But she’s been a trouper.
She is always in some sort of pain or discomfort, some times more manageable than others. She can be playing outside, reading a book, watching tv, then – bam! Howling in pain. And that can go on for hours. It’s like having a newborn with colic. We would take turns staying up with her, rubbing her back or belly, holding her, until 1,2 in the morning waiting for her to pass out from exhaustion.
The doctors all said she would be better soon but that hasn’t been the case. She can be curled up in a heap for hours howling in pain. She hasn’t been to school in three weeks. Sleep is a challenge. She looks worn out, understandably.
Our visits with the GI Fellow at Children’s Hospital in Boston – one of the best in the world, right? -left us frustrated because we felt many issues were not being addressed in a timely manner and our GI Fellow (a doctor that has completed their residency and is taking a year or more to specialize in a field, and can act as a stand in for the attending in some cases) was too cavalier about the whole thing. “She’s too sensitive. Put her in a hot bath. That works for 75% of my patients.” What the hell? I wanted to ask him if his 4 year old child screamed for 8+ hours a day for a month and he was told to just stick the child in a hot bath, would he say – sounds good! She can’t sit in a bath for hours each day. I do give her hot water bottles and heating pads for pain, though she says she doesn’t feel any relief. During our last visit he poked around on her upper back and said she was tight, tense. He tried to ‘massage’ her shoulders and she yelped out in pain. He said “clearly she is overly sensitive to stimulus and maybe accu-pressure or massage would be helpful”. I asked her later about it – she said “It felt like he was pinching me in the shoulders! I don’t like massage!” I do not happen to like it either.
During one stay they had to do a complete GI clean out. If that sounds awful, it is. A tube through her nose delivering medicine into her stomach that will expel the entire contents of her gut over the course of several hours. They gave her ativan anti-anxiety medicine to calm her down enough to get the tube down her nose. That went all right until the medicine then had the reverse effect on her and she revved up into a high anxiety mess. Between her painful gut, the forced contractions from the medicine to clean her out, exhaustion from so many days of no sleep plus it was late at night and she had not eaten since 11 am. She was a crying, screaming, snotty, poopy mess with a tube down her nose and an IV in her arm. We would try and keep her from pulling her tube out and that would frustrate her further, elevating her anxiety. (The nurse told us this was all a reaction from the meds). Getting her to and from the toilet with all these tubes you had to bring with you, wheeling in the IV behind her – and trying to capture all the poop so they can observe it…well – holy shit. Truly. I must give my husband the Dad/Spouse of the Year Award because just as all that shit was going down, around midnight – he sent me home. He said “I got this, you need some sleep, only one of us can man this process effectively. Go home, sleep in, drive Max to school, then come relieve me.” I love that man!
(The good thing about the ativan? She doesn’t remember most of the worst of the clean out. Which took about 10-11 hours.)
Also, the next morning when I took over, her bottom was so raw and painful I asked the nurse for packets of Vaseline. Then with rubber gloves, after every bowel movement I would coat her anus in it and all the surrounding skin that was clearly affected, to help ease the pain of constantly pooping and wiping (with toilet paper that was like tree bark). I also took washcloths soaked in water, microwaved them to a warm temperature and would clean her bottom thoroughly every other time. I do not understand why it isn’t standard operating procedure to instruct the parents from the start to do this. A good part of her screaming was a result of the burning pain of her injured, broken skin as well as the tense anticipation of how much it was going to hurt when she did have to dash to the loo. I told the round of residents with the attending doctor when they came to check on her about how they should instruct the parents to do the Vaseline thing and got a “um, ok, we will take that under advisement”. And a bit of an amused look.
So one would think – that clean out was two weeks into this mess, we were admitted as in-patient at the hospital – wouldn’t that be the perfect time to scope her? Nope, they want to wait until it is a MONTH into this before doing that. However – at the one month mark, this week – it takes almost TWO WEEKS to get on the endoscopy schedule! What the hell people? You should have put the paperwork scope request in two weeks ago, let me schedule it, then we can CANCEL the appointment if she is better!
She will get an endoscopy later next week. We only got that appointment AFTER both my husband and I called the pediatrician and started hollering. They first scheduled us on January 9th, then they rescheduled for the 5th. Even they had to agree that there wasn’t enough being done and that we should put in a complaint. Which we plan on doing. And they recommended we get a second opinion, which we did today at Mass General hospital. They want to do more tests to make sure we aren’t missing something.
Her blood tests came back negative for celiacs disease, but we have her on a gluten/dairy free diet right now to see if that might help.
She has an appointment with an acupuncturist on Tuesday for pain management. We are getting second opinions and a whole new panel of tests done at Mass General Hospital to make sure nothing has been missed.
One thing I do want to note: every GI doctor we have seen (residents, fellows, attendings) at both Children’s in Boston and Mass General, emphasize the need for probiotics on a daily basis. Yes, probiotics. Especially during a time like this, they explained, when the flora in the gut is off, your GI system needs all the extra help it can get. I am a huge fan of probiotics and have given them to my kids for almost two years so I felt validated when I heard this. Probiotics are beneficial bacteria to help boost your immune system and balance out the good and bad bacteria levels in your intestines. They put my daughter on Flagyl, which is an industrial strength anti-biotic (“If she starts to lose feeling in her hands or feet, stop taking them.” Whoa. OK.) so they told me to make sure and stick with a steady dose of probiotics. No problem!
(Hey, don’t say “if you have given your kids probiotics for two years why is her GI system so out of whack right now? I do not know, I am trying to figure it out! No supplement can do it all 100% of the time, ok? She hadn’t been sick in a long time before this. Shit happens!)
They also recommended peppermint oil, noting that the oil can relax the bowel walls. I love peppermint oil for many reasons, good to know the word is out on it’s healing properties. I wish I could say my daughter found comfort from taking them, but she did not. My son did get some relief from a stomach ache with a peppermint capsule. And really fresh breath, a nice side effect of it.
You know, last month I wrote about a friend of mine who lost his son Ellis McClane on November 11 of this year in a car accident. He said:
In the instant I learned that my son had died, it became crystal clear what is truly important in life and what is trivial bullshit. Most of it is trivial bullshit.
Well, I have to tell you, I have been reminded of this as well, though I am fortunate enough to still have my child.
Thanks to everyone who has reached out with advice, well wishes and sympathy. Our immediate family has been there for us so much, I can’t thank them enough. Her school has been great about sending home her work and calling often to see how she is doing.
So, while we sort the whole thing out, I don’t know how often I can come back and post, but I will try and update when I have a free moment.
Don’t count me out. I am not gone for good, you know. Right now, though, I can’t be Live Green Mom. These days, I’m just…Mom.
I have to take a step back from writing while we as a family deal with my daughter’s health issues.
Thank you for your patience.
The World of Ground Source & Air Source Heat Pumps
I’ve been fortunate to be in the position to build my own house, and when I say build I mean 80% project manage and 20% get my hands dirty as and when I can. I decided that building in the 21st century meant that I could and should embrace all things sustainable, which includes looking at renewable energy and examining the options.
Last fall I had a chance to try out some Jambu hiking boots - loved them! I was out hiking in them again today. What I enjoy about them is that they are snug on my feet yet work well around my bunions. If you have bunions, you understand why this is an issue. Hiking boots need to be snug but snug footwear around bunions can be painful. My family and I went hiking today, my husband pointed to my feet and said, “Still love your boots?” Yup! Just enough give, yet still a firm fit.
