When we started with CVS a simple dose of Zofran and IV fluids were helpful. Then we moved to needing to do Zofran Ativan and IV fluids combo. Then we added preventative meds round 1 ( too sedating and was still frequently getting sick) Then to preventative med round 2 ( which he then refused to eat anything while he was on it). Then you regroup and just go with strong abort plan for a few months til that becomes not enough again.....
Then you revisit med option 1 again (same outcome) and the same for previously tried 2nd option with same results. You read you research... you learn about supplements and can't wait to start but waiting for genetic dr to order correct dosages for you. Your ace in the hole which kept attack to 24 hours hospitalization instead of 3-4 day is now starting to cause problems with side effects as well.....SIGH......Here we go again...(update: our ace med is fine, complication is due to infection from injection and not med itself)
Making choices of what side effects you can live with and which you cannot, can be a very difficult choice. Your dr can highly recommend ones but ultimately it's our decision as parents to agree to them and to find a way to get the child to take it. Its important to be educated on options that are out there and to actively participate in the decision process.
This is the latest list of med plans available Treatment Recommendations .
Below are some reflection questions to consider when deciding which plan fits your childs needs best.
They might need only a abort or rescue plan of med take only when sick. They might require a daily preventive med plan. They may also need a ER plan or direct admit plan. Consider the following point when talking with your Dr about what proactive plan should be in place.
- How often does my child get sick (daily, weekly, monthly, every 6 weeks etc)
- When my child is down, how long does that last? (hours, days, weeks or more)
- When they are sick are they able to still do day to day things
- can they read books to distract them?
- go to school?
- focus on watching tv?
- are they in the hospital needing sedation or IV fluids?
- Are they able to take bites of food or sips of water as needed
- How long has this pattern been true?
- Does this pattern impact day to day life? Can they attend school or are they home schooled or home bound? How does the child feel about this? How do you feel about it?
- What would be a realistic goal to set at this time? (we all want no cycles but a reduction is victory enough for many)
- Can you ID triggers?
- If you can ID triggers, what changes can you make to try to avoid them?
- Have you reached out to support groups to learn what other parents are doing?
- Can you try other supportive therapy such as OT, Cognitive Behavioral Therapy, Chiropractor, Dietary Changes, Exercise to better reduce triggers and promote overall health?
- Consider the emotional and physical toll it's taking on the child and rest of the family.
Dr Li, Dr Richard Boles of UCLA are leading the way with treatment options! With also much gratitude to Dr Fleisher who is now retired....
Its not a one time process but an ongoing one... as our kids grow the challenges and needs change and so will the plan that we make to help them get through the cycles. For some the pain is managable and laying low for a week watching TV in between puking and able to take sips and avoid major dehydration.
Some dehydrate in as little as an hour no matter how much they drank the day before (that would be us). The plan that works today might not work a year from now.. what is helpful is documenting what works and when it does not documenting the specifics to that as well.
Even if you feel like you are back at square 1 with finding a new plan, remember how far you have come...how much you've learned and advocated for your child and keep up the good fight.
You felt so overwhelmed in the beginning.. and for a while you had some peace.. and it will return... Hold tight.
Stay calm and Puke on..... until we find a cure :)
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excellent
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