Living with mental illness while parenting a child with chronic health issues is a balancing act. When my son was very young, I tried working as well, and ended up hospitalized. I could only juggle so many roles. Recently I’ve been exhausted. Too involved in attending to my son’s health and educational needs to have any energy left over to write blog posts. Instead of writing I’ve been sharing other people’s content on social media and playing with tools to create inspirational quote memes.
As for my son’s health, the lab results for his immunological workup were negative, which is good news. We will see his immunologist/allergist tomorrow afternoon. Friday he is scheduled for an esophagogastroduodenoscopy (EGD). How’s that for a mouthful. Try saying it three times fast. I can’t even say it once. Hopefully the procedure will rule out gastrointestinal processes, such as hiatal hernia or esophagitis. He’s already being treated for GERD (gastroesophageal reflux disease).
Since he was sick finals week, he is taking incompletes this semester and taking missed quizzes, tests, and finals this summer. My son’s high school agreed to Section 504 accommodations for his illnesses, including gastrointestinal issues and migraines, which led to far too many school absences this past semester. Section 504 of the Rehabilitation Act of 1973 protects individuals with disabilities from discrimination in any program receiving federal funds.
To prepare for my meetings with my son’s school, I read the Special Education Rights and Responsibilities (SERR) Manual by Disability Rights California, which summarizes California and federal law, and met with TASK – Team of Advocates for Special Kids. Thank you, TASK and Disability Rights California!
[…] then, we had him assessed for special accommodations which never went into place because he did not go back to his regular high school in the fall. We […]
[…] Maybe reentering the workforce will even be good for my son. It is about time that he was more independent of me. The kid is 15, after all. He should be able to ride a bike to and from school, even if we live up a ridiculously steep hill where the alternative is to ride in the bike lane along a six – yes, SIX – lane thoroughfare with a 50 mph speed limit. We are even willing to purchase duplicate textbooks for him, though I should have had that included as part of his 504 accommodations. […]
Wow, it certainly sounds like you have a lot on your plate.
Having been through a long relationship that involved mental health issues, I fully appreciate how exhausting it can be.
Thank you for visiting the blog, nice to meet you.
Thank you, Dale.
It is a struggle and tiring.
Yes, indeed, it is.
[…] exhausted, but on vacation in Waldport on the Central Oregon Coast. When we arrived in Portland, before we […]
Kitt – I’m not surprised you are exhausted. Look at all you’ve learned in order to protect your son. You’ve learned all the rules and regulations along with making the proper medical appointments and navigating that mine field. People [as a rule] have no idea how dangerous of a disease acid reflux is. I wasn’t until Tom’s last EGD and we discovered his windpipe/larynx was shredded from the acid. His acid count is off the charts and more than likely has been for years. We finally have a doctor that placed the measuring disk that you wear for 24 hours at the right place to actually measures the accurate amount of acid.
Having the torn up windpipe for Tom means he chokes often and he has a hard time breathing. Of course it creates additional problems with every other aspect of his quality of life.
So sorry about the damage caused by Tom’s GERD. Luckily we’ve been treating my son’s with omeprazole. Just complete EGD scope. No damage per photos. Biopsies taken. GI MD does not expect to get positive (bad) results from biopsies.
Tom’s has been caused by 2 or 3 different factors over the years that the doctors are just now figuring out. Hopefully your son’s will be kept in check.
His EGD endoscopy this morning showed that his upper GI tract is healthy. His pediatric gastroenterologist expects the biopsies to be favorable.
That’s great news.
Hi Kitt, I am sorry your son’s having health issues and hope that he’ll be ok. You mentioned migraines which I used to suffer from frequently. They were debilitating and would cause me to miss work for at least a day or would ruin my entire weekend. My doctor had me try the usual meds: Maxalt and Imitrex as well as painkillers like Tramadol. I’ve also received Demerol injections as well. All these things did was make me sleep so heavily, I could not feel pain; they didn’t resolve the problem. Then, my doctor put me on propranolol, a beta blocker for hypertension. I took 10mg 2x a day and now take it just once daily. It nearly eliminated my migraines; now they come few and far in between and if I catch it early enough, it’s nothing Tylenol migraine can’t solve. Using propranolol in this way is off label; it is also used to reduce stress. I don’t know if your son’s physician has considered this but thought I’d share.
Thank you! My son is being treated with Elavil, a tricyclic antidepressant which is approved for preventing migraines in pediatric patients. Then he takes Maxalt once he gets one. The medications used for pediatric patients differ from those used for adults. He has fewer migraines of lesser intensity now. Unfortunately, he has allergies and also gets sinus headaches.
I’m so glad to hear your son’s appetite is back!! Also it’s great his immunological workup was negative. That’s enormously positive as well. I hope the immunologist/allergist appointment is helpful (I think you went there yesterday). You’ll both be in my thoughts often on Friday when he has the EGD procedure done.
Sending you my love as always….. xoxoxo
As it turned out, the tech who called reported the labs incorrectly. My son’s immunological workup showed that he is fighting a viral infection (granted, at mild levels for now) and that he needs a pneumococcal vaccine (antibodies low). So, time for a Prevnar 13 vaccine (and a flu vaccine).
Thank you for sharing the disability resources with us.
My pleasure!
I can relate to juggling coping with mental illness and a child with complex needs, Thankfully, in my case hubs is always around…he is full time carer to both of us (he doesn’t have a mental illness, but he does have his work cut out, juggling Littlie’s needs + mine + his own, so I know he would relate on some level to your post Kitt)
I can also relate to those times when writing just isn’t doable… writing/blogging is so cathartic, but like you, there are times when rather than helping, it’s a stretch (a stress even) to far… health and family have to take priority. You’re getting it right by the sounds of it… and I guess, though I needed to read and respond to you this week to realise it…I am too 🙂
I hope things ease up a little for you soon,
All the best to you and yours, Kimmie x
Thank you so much for sharing your experience. My husband works and fills in the gaps! We are blessed to have such generous husbands.
Indeed we are, Little and I wouldn’t cope without hubby’s support… I imagine it’s the same for you. x
I couldn’t do what you do. Ever. I have a hard time being my own advocate! But, I’ve never had children, so I’ve not felt the ferocity my friends talk about when their children are ill. I do see them exhausted–and they don’t have mental illness.
So, this is my round-about way of saying you are extraordinary in the face of enormous stress. And I’m SO glad you put your needs before house cleaning!
Unfortunately, I’m totally embarrassed by my house. Yes, it is A LOT of stress. I cannot imagine how hard it would be to parent someone with even greater needs, as some children do have.
You’re welcome, Kitt. 🙂 So glad to hear his appetite is back! Great news!!
You are really having a hard time Kitt. I wish you so much courage and love and all the best for your Son x x x x x
Thank you so much!
You’re likely very knowledgeable about these various tests.. but in case regarding the scope to be done for your son… I would suggest sedation in case they say he doesn’t need it… the gagging reflex is really difficult if he doesn’t have it…. at least I surely needed it.
As an aside:…. could you give me or email me yours’.. I’d like to ask you a question re stigmama… Thanks… Diane my email is writerwannabe763@gmail.com
They are putting my son under for the EGD scope. He had a scope in his nose and throat once to diagnose vocal chord dysfunction, which he has. We went to one session with a speech therapist to teach my son a few techniques to prevent his vocal chords from spasming when he runs. When his vocal chords spasmed, he would panic, for it felt like he couldn’t breathe even though he could.
Good, I just wondered because they always ask me if I want it or not… and one time they didn’t give me enough sedation and I woke up half way through it… gagging of course like crazy… They gave me some more but for that couple of minutes… didn’t like it at all… Diane
Yikes! I can only imagine…
Wow, Kitt, you are dealing with a lot. I commend you for how you are keeping proactive with your son’s rights. I am praying for you both.
Thank you so much, Lydia!
You’re an inspiration Kitt, praying for you and your son xo
Thank you, Karen! I greatly appreciate the prayers.
esophagogastroduodenoscopy, esophagogastroduodenoscopy, esophagogastroduodenoscopy. I did it!
i keep running into all these people who i wish were my parents. Job well done with your littl’ ones.
btw, it might come as a little bit of a surprise to you you are not the new york times. for that reason, don’t feel obligated to post on given time schedule. I try to post daily, but sometimes falls back to weekly and even went four months without a post. if your write for therapeutic reasons, try not to let in stress you out. too much that will lead to reduced value to you.
you’re a busy woman. i think people will be willing to read your stuff when ever you post, even if is not daily.
I agree! My counselor told me that my full time job was looking after my own health. And you have two full time jobs, Kitt – both your health and your son’s.
True. I use that too often as an excuse to not clean our home. But, I’m exhausted and overwhelmed.
I am the same. I am trying to learn to forgive myself for a messy house and/or ask for help. It isn’t easy.
I need to learn how to ask for help.
I just said exactly the same thing to a Facebook friend and blogger who had a reader complain that she hadn’t posted in a while. This isn’t my job. I do not get paid. Thank you!
i just re-read your post. i originally thought you were apologizing for lack of posts. now I see that’s not the case. you were merely following your advice of not falling into the guilt trap if you are unable to post on a regular basis, however you define regular. So, a hearty good for you for practicing self care.
Thanks! Honestly, not writing for me means that I’m tending to some need other than my own, for in writing I express myself, whether or not I share what I write.
I’m amazed you have the energy to do as much as you do, with all you’ve got on your plate. Does your son have an IEP (Individualized Educational Program, for those who might not be familiar with the term)? I had to fight like a tiger to get one for my son. Reason why? IQ too high. Does your son have Celiac? I guess they’ll take biopsies for that when they do the UGI scope, right?
Sending good vibes, with prayers for answers that lead to healing <3
He did not qualify for an IEP. I could have fought the school district since according to my reading of the Disabilities Rights California (DRC) manual, Special Education Rights and Responsibilities, Matthew is eligible for special education services under other health impaired (OHI), for his health problems which have been chronic repetitive communicable infectious diseases which have had adverse effects on his educational performance resulting in absences and poor grades. Instead, he has a 504 plan with accommodations for his migraines and nausea. Honestly, I need him to not get sick so frequently. When he has his EGD, they will take biopsies.
Thank you, Laura, for your prayers.
Has he been evaluated for Complement deficiency diseases? That could explain the immune deficiency.
Seeing pediatric allergist/immunologist this afternoon. Haven’t received hard copy of results. Told over phone they were negative. Photographed lab order before testing. He was tested for (alphabet soup to me): Immunoglobulins [7083]; IGE [542]; T&B cell subset, NK cell [7197] CD4, CD8, CD56, CD19, CD3, CD16.T&B cell, NK cell; Haemophilus Influenzae Type B [35135]; Streptococcus Pneumoniae IgG 23 Serotype [16963] ; Tetanus Antitoxoid [4862]; Diptheria Antitoxoid [4865]; Thyroid Panel [7020]; Anti-TPO, Anti-Thyroglob, TSI [89185]. His pediatrician was going to ask the lab to see if there was enough blood left over to test for mononucleosis.
Wow. You’re covering all the bases. Don’t ask for mono, that’s a very inaccurate test. Ask for. CMV and EBV, the two viruses that cause mono syndromes and can be chronic or recurrent.
Thanks. I’ll mention it to his immunologist/allergist this afternoon.
His lab results indicated slightly elevated lymphocytes, probably due to a mild sinus infection which the allergist is treating with sinus sprays and nasal irrigation. He also had low pneumococcal antibodies, so his immunologist prescribed a Prevnar 13 vaccine and a flu vaccine. Four weeks after his Prevnar vaccine, we will go back for a follow-up pneumococcal panel and mono test panel which includes CMV & EBV. Thank you so much for your input. You made me look smart. 😉
Umm…I wish I could just shut up, but I can’t, so here goes…lymphocytes indicate viral infection. Bacterial infections cause elevated leukocytes. Thus my suspicion of an underlying viral infection is strengthened. Sigh. It’s very frustrating, not doing bedside medicine anymore. I love a good mystery, and there is no better mystery to unravel than a kid with a bunch of seemingly unrelated medical issues. Most of the time there is a single underlying issue, but on these days of total medical specialty fragmentation, those things tend to get snowed under by masses of tests by every specialist in town, and nobody is really looking at the big picture. Couple that with the fact that nobody learns physical diagnosis anymore (as in, using one’s five senses and adding the sixth), it’s a pitiful state we’re in. Anyway. Lymphocytes>> virus.
That must be why they didn’t want to prescribe antibiotics. Perhaps I’m the one who didn’t understand. He has been sick this past week and had to take incompletes because of it. His immune system is compromised. I have a copy of his lab results.
That’s great that they didn’t rush into knee -jerk antibiosis. Means your doc is intelligent and reads the medical literature, yay!
Like I checked out your credentials, I did my research on my son’s immunologist. Yep, Dr. Schulman I vetted you as a pediatrician specializing in integrative medicine, licensed in NY, OH, UT, & NC, and educated at Univ of Illinois & Strong Memorial. I do not heed medical advice from just anyone. Your background is impressive.
My son’s pediatric immunologist is also the real deal: Christina Schwindt, M.D. is board certified in both pediatrics and allergy, asthma and immunology. She attended St. Louis Univ School of Medicine for med school, pediatric residency, and allergy & immunology fellowship.
Oh you excellent sleuth! May I ask, where did you find my credentials? I haven’t looked myself up. Sounds like you have a wonderful doc! You are very fortunate–but then, it sounds like you do your homework. All moms (and everybody else) should do the same.
That said, I am currently going round and round with the Risk Management people at Duke University. I thought the Duke ER would be a good place to go when I was having chest pain (I think it’s angina but can’t seem to find a doc who cares). I also have a skin condition where my skin tears off in sheets, leaving holes that take weeks to months to heal, so I have to grease my whole body up to decrease any kind of friction. The triage nurses couldn’t get the EKG stickers to stick, and I tried to tell them to just use a alcohol wipe on the places they needed to stick them, but they ignored me and instead took a 12 lead on leads that were not in contact with my skin and was totally unreadable. In addition they were both audibly cursing! I walked out and immediately called the patient care representative, reported the whole thing, and told them I expected not to be billed. They charged me anyway, and had the gall to send it to collections when I sent their bill back with an explanatory letter. So now I am back at square one with this highly respected institution. Fie.
So sorry you had such a horrible experience.
Honestly, I probably began with Google search, found old directory listing of your former practice in NC. Went to NC medical board and got details. Easy. Been using the Internet and before that newsfeeds for research for decades.
You seem to be a journalist? If not, you should be. (Or a private eye…..ROTFL)
I will keep you in my prayers for your skin condition and chest pain.
Thank you, Kitt. Prayer is miraculous. I pray for you and your son.
In September he has an appointment with Children’s Hospital Orange County (CHOC) Metabolic Clinic to check for possible metabolic disorders, such as a mitochondrial disorder. Both sides of our family have members with hemochromatosis, a genetic metabolic disorder in which too much iron is absorbed from food. Both my husband and I have had iron panel tests and have tested normal. Time to make sure our son has not inherited the disorder.
My goodness, I hope not. The more I live in the world, the more I understand how the legend of Pandora’s Box got started. But once again, things always get blamed on women. That’s because men are jealous of women’s ability to bring life into the world in so many ways, and have to figure out ways to pin all of life’s miseries on us as well. Oops, got a bit off topic, but there you go. Hope it’s all normal or at least readily treatable!
Kitt you are an awesome Mom and you are doing the best that you call. That is all we can ever ask of ourselves, is to try our best. Take care!
Thank you, Vic!
Parenting is such a balancing act especially when our children have health issues. Hugs to you.
Yes, without a doubt. Thank you, Amy.
this is indeed difficult – stay strong mother – May God Bless you.
Focus on the whole family. “From my perspective, mental health is family health,” which means paying attention to each other’s wellbeing, Nicholson said. Watching for red flags in kids becomes especially important because “research has shown that kids with parents with serious mental illness are at risk for developing mental illness themselves, both due to genetic and environmental issues,”
Yes. I first took my son to see a child psychologist when he was four. He is not interested in going to therapy now, but he sees both a psychiatrist and a neurologist.
Who wouldn’t be tired with all that is going on. I will step up the prayers for all of you. So glad the test was negative and hope the EGD does, too. So much worry and anxiety for all of you. Big hug, Ellen
Thank you, Ellen. I wish you and your husband the best. Keeping you both in my prayers, as well.
So very much on your plate, Kitt, take care of yourself. ❤️
Thanks!
You’re a good mom, Kitt – taking the bull by the horns and educating yourself like you have. Good on you! I’m glad your son’s test came out negative, too! Warm thoughts and positive vibes sent to you for Friday. I’ll be thinking about you. I hope your son’s feeling better ASAP (which, I’m sure, will make you breathe easier as well.) Some big hugs comin’ right up! <3
He’s doing much better. His appetite is back, which is a huge relief. Thank you for your kind words and support.