Q About Health Plan & Seizures

[Ainsley's Mom]

Ainsley's school typed up a Health Plan for school since she is trached. It includes her diagnosis and various aspects of care, or things to be careful of.

Ainsley has a rare form of cerebellar hypoplasia. Her docs have all said we'll have to watch her to see how it manifests.

We had one time when she was a baby that we thought perhaps she had a seizure. She was very sick from RSV. Had been suctioned a bunch and bagged. She turned blue. Now looking back I think it's also possible she passed out. Since then, no seizures or anything that looked anything like a seizure.

So the school nurse is saying that she needs to be watched for seizures. I feel like I don't want that on the plan. She is nearly 5 years old and hasn't ever had a seizure. Perhaps some kids with a cerebellum malformation, but should the plan be based on Ainsley?

Also in the respiratory part they say she is at risk for respiratory arrest. That also doesn't sit well with me. She is at risk for respiratory distress if accidentally decannulated but she has never ever stopped breathing.

Am I being too picky? How much does this Health Services Plan matter? I think it gets files along with the IEP in her records.

For one thing my poor kid has so many things they need to pay attention to that I don't really want everyone keeping an eye out for something that is extremely unlikely to happen.

TIA for your opinions.

[jamie]

Susan the last time I took Evan to the ER, the nurse took a lot of old information off of his current charts. things like seizures, he has not had one in over a year, and asthma that we know he does not have now. i think in order for them to treat your child correctly the medical info needs to be current and relevant.

Is this the first year Ainsley is going to school? she is growing up so fast.

[JWorthington]

I agree with Jamie, there are more important things to look out for than things that are unlikely to ever happen. best of luck x

[KJKK8437]

I think your concerns are justified. In fact, your concerns are one of the primary reasons why I would not let Alex's IFSP transfer directly to the school to prepare the IEP. I *knew* we would be dealing with a lot of information that the school would be overly concerned about which were simply no longer issues, and I worried it would be hard to "talk them down" as it were. (Our pede and one of our social workers actually agreed with me.)

And, as a practical matter, the more superfluous medical "diagnoses" you have in the chart, the more likely a new teacher/caregiver will make a misdiagnosis of what is going on in an emergency. I don't think this is trivial or insignificant.

I'm wondering if this track becomes simpler if you have a letter from your pede stating that these previous issues are no longer considered to be part of the current medical profile (and correcting the respiratory arrest vs. distress?)

[Ainsley's Mom]

Originally Posted by jamie

Is this the first year Ainsley is going to school? she is growing up so fast.

This is for the school transfer due to the move. My poor baby started therapy a 4 mo age, birth to 3 "school" before she was 2. This is her second year of going on the bus to special ed preschool. Since she's got an October birthday she has one more year of preschool before starting Kindergarten.

Thanks for your replies guys! I'm going to revise it along with correcting all the spelling errors.