Stepping Up

I actually had another post planned for today. It’s edited and everything, but some things have come to my attention in the last few days and I feel like I have to say something.

In the last few days I’ve read the blogs of two different special needs parents whose children are suffering adverse effects after the long-term use of reflux medications. Both of these children ended up in the hospital undergoing a series of medical tests. We no longer give Charlie reflux medication–mostly because it never seemed to help us–but I was always told my doctors that the medication is safe and never told about any side-effects.

If there’s one thing I’ve learned as Charlie’s mom it’s that no two parents are going to do it alike. You can co-sleep or put your child in another room, you can pursue alternative or go strictly traditional, you can feed them all-organic, gluten-free, casein free or you can take them to McDonalds. When your child has special needs, there are even more decisions to make and for me, the stakes seem higher. This morning Charlie woke up at 4am whining and fussing. No amount of rocking or singing would get him back to sleep and he seemed to be getting more and more agitated. I was panicking. I was sure this was related to his seizure med change and couldn’t decided if I should give him some Va1ium or just wait to see what happened. Finally, my husband was struck with a brilliant idea and took him into the kitchen and fed him a peanut butter sandwich. He instantly went back to sleep.

I’m sharing that story because I want to be clear that I’m no doctor and I’m no expert. I’m as confused as anyone else about the right things to do for my child.

But I also think that it’s time we “Special Parents” started asking some tougher questions. I myself can think of at least four different questions I’ve never asked our doctor or even researched when it comes to medications. For example, do medical students take classes in pharmacology or is that covered more in residency? Are drugs ever tested on children? What kind of data is available about the long-term use of medications in children? Is it possible that kids with CP, with their funky digestion and limited mobility, process drugs differently than typical children? Whose job is it to tell us about possible side effects?

This doesn’t mean that I think we should stop giving our children medicine. I just think we need to be hyper-vigilant. We are still our child’s best advocate. I know that even as a tiny baby, doctors would recommend over the counter products that were contra-indicated for Charlie’s heart condition. Who knows how many other times this happens? Doctors are stretched thin these days and we would be best served if used them as a resource and not as almighty beings.

I know this parenting thing is never easy. I know we’re all doing our best. I also know that for me, I’m going to try harder to be informed about the medications that are recommended for Charlie. I’m also going to try to limit the use of medications for extended periods of time.

OK, stepping off my soap box now–don’t forget to enter my giveaway to win free art or stationery! If you don’t want it for yourself, it would make a great gift.

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Comments

  1. PrayforNathan.org says:

    Katy, fantastic post. I think this issue needs so much awareness. But I also think it's also a matter of knowing alternatives!

    I've been stuck for a really long time trying to take Nathan off Prevacid. My cousin is a doctor in Argentina and when I told her he's been on Prevacid for 3 years she was horrified. But every time I try to take him off prevacid, things go downhill very fast. He starts throwing up, he gets irritable, he cries a lot, doesn't cooperate in therapy. I've tried several altenative, natural meds with no luck. So I feel stuck. I know Prevacid's no good for him, but what can I do?

  2. great post. there is often so much that's unknown with our kids and we really rely on specialists to tell us what to do, but we also need to trust our own instincts as well. sometimes we really do know what's best, and sometimes the doctor's are stymied, or they are just going along with their own protocols. Ask the questions, be sure you understand what your doctor is advising (as much as you can), and trust your own gut.

  3. ditto terena's last sentence.

    Drugs are a perfect topic around which to configure issues of medical care.

    A criticism I have for how medicine is practiced are the procedural barriers to forming a relationship with one doctor. A doctor who can remember you from one visit to the next. With repeated visits mutual trust can grow between a parent and the physician.

    Must be a male thing – your hubby recognizing that Charlie was hungry. Thank him for me.
    One of Charlie's biggest fans, Barbara

  4. I am so frustrated with this same issue. The GI is pushing for us to use Reglan but I refuse. I took it and know how crappy it made me feel and they think I am going to give it to my child when she can't tell me how she feels? Can you tell me what blogs you are referring to? I am quite interested in them- Prevacid, Reglan, or whatever med it is.

  5. Excellent post… really got me thinking. Thanks!!!

  6. Katy, I so agree. I have never been comfortable with any medication given to Aaron. I know that sometimes we have to do what is necessary for their immediate wellbeing and relief, but I can't help but feel that any medication will have some type of negative affect on them in the long run. I was so upsetting when Aaron developed infantile spasms. With diet and ABR, I weened him off of the reflux medicine and his doctors were going to ween him off of this two other meds for his heart and "regular" seizures. Now with IS, my baby is on two other medicines. Oh how I hate it! They say the medicines don't react to each other but you always find out about some study done 10 years later then its too late. I will use common sense in dealing with doctors' recommendations for medicine but will continue to fight for a "wellness" approach for Aaron. I appreciate the expertise of doctors but feel that they get stuck in their protocols and don't investigate the source of problems like they should. I feel they are too quick to mask symptoms with medication. If I had not sought alternatives and wellness approaches for Aaron, he would still be on reflux medicine and the dosages of the other two would have been increased because they haven't been increased since he was two months old. Sorry to rant but this is a sore spot for me. Oh how I feel for those moms.

  7. You know, Katy, you are so right! This has been a subject of debate for our family for quite a while! Faith has been on Prevacid for almost 5 yrs and these stories have been freakin' me out too! I do know that a alot of meds are not tested on children before hand, b/c we quizzed our dr. about it! It is so scary, that balance act between no meds for safety and meds for nessesity! Frightening!

  8. Wherever HE Leads We'll Go says:

    You are so right! We have to be informed. We have to ask all our questions and do everything we can to understand things for ourselves. Doctors do the best they can with the information they have, but no one knows our child like we do.

  9. ugh. the reflux monster.
    Miles (2.5 yrs)has been on zantac, prilosec and now prevacid. We just started reglan 3 weeks ago. He still has AWFUL reflux. I've been reading one of those blogs too & it really has me worried. Katy- I read about the slippery elm from an older post of yours. Still trying to figure that out – do you mix it with Charlie's food? How often does he take it? Ronette -I would love to hear your alternative approaches & how you got your child off of reflux meds.
    Thanks, Kate

  10. Anonymous says:

    I think it's illegal to "test" on kids. The only way to get around it is to enroll in a "study" but that's pretty limited. Usually they are comparing an established therapy with a new one in those cases.

  11. Hi,
    I don't know if this will be helpful or not but I see all your questions about medications. I am a pediatric pharmacist (I realize you will just have to take my word for that) but maybe I can give you a little of info.
    Most medications are not tested in or officially approved for children. There are exceptions, like seizure meds for seizure types found only in children, but most are not. Usually this is because there are moral and ethical issues surrounding giving experimental medications to children, and of course the fear by drug makers of lawsuits if something goes wrong. So once a drug is used some in adults and it doesn't appear to cause major problems doctors will start using it in children. Technically for a doctor to prescribe most meds for children is considered "off label use" of the med. However, there really aren't many other choices. And of course children aren't just small adults and may have problems with drugs that adults don't.
    Doctors don't get a ton of training in med school about medications. The people who do are pharmacists. If you can, I would recommend that you find a pharmacist in your area who can help you. They will be able to go over what to expect and side effects of any drugs you have questions about and may have more time to talk than your doctor. Sometimes pharmacists might even be able to suggest alternatives to different medications that have different side effects or non-prescription alternatives.
    Anyway, this is a very long reply to a very complicated topic. I hope it helps.

  12. Anonymous says:

    You need a gentle laxative to clean their stomachs first. Coconut oil from tropicaltraditions is what we use daily in our cooking. It is completely safe for children in small quantities. We recently ordered a 5 gal pail for $145 with shipping.

    Less meat, some fiber (fruit & veggie smoothies), banana is good for stool movement. A simple remedy is to drink a glass or two of warm water first thing in morning, this helps cleans the crud up. Acid has to be countered with alkali and milk is good alkali.

    Giving reflux meds is backwards, body needs acid to digest, you don't suppress its formation, you just enable the whole process to go as nature intended. Excess acid is poo poo material, flush it with gentle laxative.

    Another related topic is gases, we countered reflux and gases and pain while passing stools by giving our child a drop of peppermint oil in each feed. A drop is pretty powerful, and it makes me go quickly. We got this from https://www.lorannoils.com/p-8898-peppermint-oil-natural.aspx