My son has missed WAY too much school this year. He’s attending a private school where he gets one-on-one attention and learns at his own pace, so he simply falls behind and the charges for missed classes just keep adding up.
He had gastroenteritis earlier this year (which we all had and which we all still have lingering GI symptoms from). This morning he complained that he had a migraine. I do not know whether he truly has a migraine, for his symptoms are not as severe as they were before he took preventive medication.
Our psychiatrist has told me that I should stop taking Matthew to health care specialists, that he needs to learn to live with migraines, and that I am enabling him. Hard to have your child live with chronic, cyclic pain and vomiting. Those in the mental health profession tend to pathologize physical symptoms as “somatic” and dismiss very real suffering and pain. I, too, have been guilty of doing so in the past with both my son and my husband.
Yes, I’m at a loss as to what to do, as to how best to care for my son and myself.
I'm at a Loss…
Comments
52 responses to “I'm at a Loss…”
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All good!
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Weight bearing exercise, Calcium, D-3, and not taking omeprazole.
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Soooo happy his migraines are better! Can they help with the osteoporosis? Weight bearing exercise would be great! Hugs for both of you.
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He’s doing much better now. His neurologist increased his Topiramate and switched him to extended release. He gets fewer and less severe migraines now. His immune system is still wonky, and he was recently diagnosed with juvenile osteoporosis probably due to long-term use of omeprazole for GERD.
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I’m so sorry your son is not doing well. I don’t think your doctor is right, how can he expect a child to just live with the pain. Maybe get a second opinion. I’ve had awful migraines before, the only thing I could do was to lie down in a cool dark room with ice on my head. I feel for you, and I’m sending you lots of hugs. ?
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i consider the title of this blog very powerful and to us a clear wake up call…this is such important words.
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Thank you!
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That’s part of it, too. We’ve all been under the weather since we got this gastrointestinal bug. It lingers.
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Just a short note to say I was so sorry to read this. I hope you get to the root of the issue and find the way to best help your son.
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Kitt, has the doctor told you how Matthew is going to learn to manage the pain? Has he mentioned DBT which has some use in pain management. If your Son can’t find a direct way to manage he might use a more indirect strategy, such as creating somatic pain in other parts of his body.
And speaking of gastroenteritis, now that I’m sort of on the mend I’m working on your interview…:)
There does seem to be a headache that lingers after this miserable bug let’s you move out of the bathroom. -
Sorry to be so late with my comment; you know I’ve been overwhelmed, but that doesn’t mean I don’t think of you often. I love you and care about you.
I absolutely LOVE the picture you kindly took at my request of the vivid, gorgeous yellow hibiscus flower posted on Instagram – thank you SO much for doing that, my friend. Even when you’re going through an incredibly hard time, you took a moment to capture that magnificent flower, and it cheered me up – your effort meant a lot to me. ?❤️ -
Thank you.
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Good ideas. My son doesn’t find therapy helpful. I first took him to a therapist at 4 years old & he’s 16 now. He finds meds most useful. His neurologist suggested extended release
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Sent you an e-mail trying to provide alternative possibilities to your son’s migraine prophylaxis condition, Kitt. One link contained ratings and reviews with each medication listed. Welcome to physiology #101+ trying to discuss an alternative with your physician(s). If you have a difficult time with it, suggest you sit back and watch the “Out of Africa” DVD I gave to Hufsa on 1 October. That should help bring you back to normal. You sure have a lot of comments on this post.
God Bless + Namaste. -
Hey Kitt,
You’ve received a lot of good advice above. I often tell families in similar situations to slow down…yes he may miss a year of school / suffer poor grades (ask his teachers to note health difficulties on his transcript). The reason I say slow down is you all seem to be swirling in a stew of specialists and treatment options which can in itself mask any effective regimen.
Talk to your son about a season by season approach: try a few things for a month or two and gauge effectiveness then fold in / eliminate a treatment or two for the next month(s). I suspect you are already doing this, but again – make sure the pace is slow enough to avoid a swirl that obscures results…even if they seem ineffective at first, over time some things start to kick-in and it’s important to give things a chance to either prove themselves or be definitively scratched off the list.
I’m not sure about the Topamax, but sometimes patients spend months adjusting doses and strategizing for side effects until the “sweet spot” is discovered. You are likely a pro at ameliorating medication side effects. 🙂 If he can inch up the Topamax from his present reduced dose to a slightly higher dose (think 3 or 5% increases) his body may tolerate it better – especially if you develop options for the side effects. He may not even need to get halfway back to full dosing before some marked benefit is achieved. Managing incremental dosing is sometimes easier with pediatric liquid dispensing of meds – ask about liquid meds that can be better partially dosed and run a little trial for a while with a syringe for exact amounts – keep a log.
As far as counseling goes, yes…keep at it, but maybe fold in someone who doesn’t prescribe and has a good touch for adolescents and young adults. Explore things like steady meditation / mindfulness etc. Lethargy can be counteracted by only watching favorite TV shows while on a treadmill…the brain begins wiring in positive experiences with activity.
Thats about it for now. Let me know if I can be of any further help. 🙂
RR -
Thank you. Wise
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Just a simple word of advice in all well meaning, (with reservation that I do not know you very well). If the doctors have examined him and he has the right possible treatment/support when it comes to the migraines, I think the psychiatrist might have a point in what he is saying. That is, if he is a good psychiatrist and if he knows you. I still want to say that it is very hard to “judge” in situations like this for me (from the outside). It seems like you are doing / hsve been doing your very best, to find the best possible diagnosis and treatment foe your child. That is good parenting indeed in terms of caring. I hope that you find the right path for you and the right balance in your songs activity level. Be well. ⚘
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Bottom line: migraines suck.
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He’s both of our psychiatrist. He knows us both. We’ve both been seen by the psychotherapists in the group practice, as well.
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Prayers are welcome. We could use the help.
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I’ve been on all those meds. The valproic acid didn’t do diddly/squat, Elavil did nothing, and Topamax was hailed as a miracle drug for me. However, it had limited success. The only relief I found was Imitrex, then developed a reaction to it. I really, really, hope they can get to the bottom of this. I am keeping good thoughts for you and your son. Please keep us updated. Sending soft (((Hugs))) and Woof!
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The psychiatrist that you speak of…is that person treating just you or Matthew as well? I only ask because your psychiatrist may not really understand what Matthew’s problems are and is speaking more to your well-being. However, you have to do what you think is right for your child. Your psychiatrist needs to work on helping you cope with the situation and frustration and not tell you that you are wrong regarding your parenting style.
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Kitt, I dare not make any suggestion or give an advice because I have none of those. Oh my, all I have are prayers for you. All those you care for including and most especially YOU! Just know as I know you do, that this too shall come to pass Amen
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Thank you!
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I don’t have answers or advice, Kitt. Just want you to know you have my sympathy. Wishing you wellness for you and him. ❤️
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You’re very welcome Kitt ?
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The Maxalt usually works in conjunction with naproxen.
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I don’t expect answers. That’s what’s so challenging about chronic illnesses.
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Since it works for me like a charm, I would recommend Naratriptan. Maybe you can ask about it. ???
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Hm, well that is quite a bit of work already. I wish I had something for ya Kitt but I am still drawing a blank.
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He does a week of work independently for each hour of class time. He does one hour per class per week. Unique school for kids with similar needs, professional working kids, and kids kicked out of school.
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It’s terrible. He’s suffered since he was a toddler. He takes prophylactic medication, but we reduced his dosage because he didn’t like the side effects.
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Thank you for sharing your experience with your daughter. It’s so tough. People have little compassion for those in chronic pain, or for those caring for them. It’s tough.
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Thank you for sharing.
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Ah Kitt I feel for you simply because you have a much finer line to walk than many other parents, when it comes to parenting vs. enabling. I wish I had some wisdom for you but I have to admit I feel that you have a better grasp of the situation.
Is there no way to make up work (say on weekends)? -
As he is still an adolescent, aspirin is counter-indicated. He takes Topamax for prophaxis and Maxalt, a triptan, and naproxen for treatment.
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Thank you.
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I’m so sorry. Many of my husband’s family members deal with those debilitating migraines and they are awful just to watch. I can’t imagine how difficult it is to live with them or to be the parent of a child who struggles with them. My SIL couldn’t take bright lights and would throw up regularly from migraines when we lived with her during her & my husband’s undergrad years. I was definitely not as sympathetic until I witnessed it first hand. My heart goes out to you. What a horrific experience to go through.
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Thank you.
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Thanks, Maggie. We’ve tried valproic acid in the past, as well as Elavil which is used for pediatric patients. Now he’s taking Topamax, but doesn’t like the side effects. His child neurologist is a specialist and suffers from migraines herself.
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My situation is similar, and I don’t have answers. I, too, get messages that I may be protecting her too much and she needs to learn to suck it up and function with her pain. However, I feel that after she is out of high school she will have CHOICES about her lifestyle that she is not allowed to have now. The part-time home teaching I do for her is designed to help her reach that place with a shred of self-esteem and sense of agency. You are not alone and neither is he.
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Every child is different aren’t they, and you’ll do what you feel is right for him ?
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*If your son is in pain…
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If your son isn’t. Pain, you have to attend to him. Sometimes psychiatrists can be quite stupid! Do you have a medication you can give him when he gets one? I take Amerge , it’s a triptan, actually Naratriptan and it works like a charm for me. Or Excedrin as well. Sending you more hugs.
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Your son falling behind due to aliments are beyond your control. Tuition costs mounting up adds stress to everyone in your household. Your parental instinct to take care of your family is strong. Balancing your well fare is crucial during these times. There is a difference in how people are treated for physical pain and mental illness. You have options. Second opinion. Dietary changes. Maybe some exercise. Talk with people that support you. You find yourself at a loss, and it’s okay. It gives you an opportunity to discover something new about yourself. Take advantage of it. You are a dynamic person and a wonderful writer. I’m inspired by your blog.
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No advice. Just think you do amazingly well with all your family obligations, especially with all the needs everyone has. Thanks for keeping us posted and what you do for us too.
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I suffered with migraines from the time my menses hit til the day I had a hysterectomy. No one should be telling your son to learn to live with it. My (former) neurologist told me that migraines can lead to strokes and dementia. So the accent should be on preventing them. Maybe your son is taking valproic acid as a preventative? I would get another opinion, hopefully, somewhere that specializes in migraine therapy, even if you have to go out of state. Since money is being an issue I would try St. Jude’s for children. They might be a good starting point. Good luck.
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We have tons of doctors: pediatrician, psychiatrist for depression and anxiety (ADHD in past), neurologist for migraines, gastroenterologist (cyclic vomiting with migraines), metabolic specialist (to rule out metabolic disorders), allergist/immunologist for allergies and asthma, dermatologist for eczema, and endocrinologist (at my son’s request to rule out endocrine disorders). Unfortunately, chronic illnesses are chronic because they are not yet curable. For all our advances in medicine, we have SO far to go.
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Thank you so much. My psychiatrist says that I’m “too good” of a mother, coddling my son so that he doesn’t learn to do for himself. There is truth to that, but it is not the absolute or only truth. My son does have special needs. He is not typical.
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That’s a tough place to be, you want to do the best for your child and you don’t know what to do. I hope you are able to find a doctor willing to listen and offer help.
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I don’t know the answers, but I know it’s amazing that you can juggle and care for your family members in this way, and I think you’re super strong <3
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