March for Babies

Thursday, April 14, 2011

Careful What You Wish For

The Short Version

• Two New Diagnoses

1) Spastic Diplegia - A sub-classification of the most common form of
Cerebral Palsy.

2) ADHD-Combined type - Both inattention and hyperactivity/impulsivity

• Mere FREAKS out

• Mere slowly starts collecting herself again

The Long Version

I've been wanting...needing to write for a while but felt like I had to hold back now that I am no longer anon. However, Julie mentioned something the other day which opened my floodgates. I typed up a huge purging comment on her blog and then deleted it because that wasn't where it belonged. It belongs here, where it all began anyway.

I took Amanda to the orthopedist back in October to follow up on her knock knees which are no longer knocked. I asked at that time about her toe walking which her school physical therapist had recommended we check into. She has tight heel cords, she doesn't get full range of motion when she walks however she is able to walk, stand, sit, climb ride a bike and do what is physically necessary for school so PT through the special ed services at school has been discontinued. She is able to walk with "flat feet" if we remind her to concentrate on it, but her natural gate is on her toes. The orthopedist said she probably has a mild form of Cerebral Palsy and if we took her to the neurologist for a formal diagnosis we may be able to get more services for her, either insurance covered physical therapy or through the school again.

We had the neuro appointment at the end of March. The neurologist was a friendly bright engaging young woman (loved her!) who talked to Amanda, not just me. She said it is quite common for micro-preemies to have some scarring in the frontal lobe area of the brain. Seizures are not uncommon so she ordered an EEG (still awaiting those results). She agreed we should definitely follow up with the child psychologist on the ADHD but that the seizure issues could mimic ADHD. The EEG will determine whether we pursue anti-seizure meds or ADHD meds as treatment. She decided not to do an MRI at this time which could conclusively diagnose these issues for us but would severely traumatize my poor girl who is acting out like CRAZY right now from the two visits to the neurologist's office within a week (initial visit then EEG). The doctor had enough information from the circumstantial evidence to give the diagnoses.

She has Spastic Diplegia, which means both of her legs are affected, she may have normal intelligence (also to be checked by psychologist) but learning disabilities and issues with fine motor skills can be a problem for many patients.

The neurologist agreed the sensory processing issues seemed apparent as well however, Sensory Processing Disorder (SPD) is not considered a medical diagnosis in and of itself and therefore insurance will not pay for therapy. Let me explain how CRUSHING this feels. What I feel would do her the most good is sensory integration therapy. This will not be covered by insurance. Insurance will pay for "rehabilitative" therapy not habilitative. Meaning, they will cover her to regain a lost skill, but not to gain a skill she didn't have before. Our best bet may be a local hospital that specializes in rehabilitation which has a special program for Pediatric Cerebral Palsy Therapy which includes sensory integration therapy along with PT, OT and Speech.

Sensory Integration Therapy is my main goal which is not covered by insurance. There are a few very good private therapists in town and I will just have to figure out a way to pay for them because the sooner she gets help the better chance she'll have in school these first early years. I need her to like school and to continue to LOVE books and learning new things. She is going to need this resolve as I fear school in later years will be a huge challenge for her organizationally and just trying to keep up and fit in and feel equal.

It is my belief that the SPD is her main issue right now. She definitely has auditory processing differences, is sensory seeking, inattentive/distractible has multisensory processing issues...the list goes on. So, let's look at this. Trouble processing what her senses are telling her, inattention and highly distractible/impulsive. Sensory seeking means she is constantly trying to FEEL movement/touch/SOMETHING. Put these things together and they sound like a kid with ADHD, no?

I am not saying she doesn't have ADHD, but all the meds in the world will not fix her sensory processing disorders. We need to start with those first, I think if we can get those under better control the ADHD will be easier to manage and symptoms will be much less than they appear right now.

I went looking for these diagnoses believing they would help me get her the support she needs to continue to achieve and succeed in school. They recommended last year that she go to a special ed preschool. That did not work out logistically for our family and I chose to keep her in a private preschool/daycare class with itinerant (30-mins/wk) occupational therapy through our local school system. She has met 3 out of the 4 goals on her IEP and has made progress on the fourth. She is doing well. Next week is parent teacher conferences with her preschool teacher to be followed by two rounds of kindergarten screening. We will determine in the next month whether she will attend Young-5s or Kindergarten next fall. I don't really know what to wish for. I think she would do well in the Young-5s class and be more equal to the kids in that class but she will be almost 6 when the school year begins. Not so bad now, but down the road the difference in age will become more apparent.

Also, her occupational therapist said she is doing so well she doesn't need special ed help anymore. She can exit from the program. All fine and good, I am glad she's doing so well, but that means in order to get help again she has to show signs of not being able to keep up. Why make her fail in order to offer the support she needs to succeed? I want an IEP with accommodations for ADHD at the very least. Keep her in the system and under the watchful eye of her teacher and the school social worker. She will need the extra help, I am sure of it.

I learned to advocate for my daughter in the NICU five V-E-R-Y long years ago. I strengthened that skill in the pediatric oncology unit three V-E-R-Y long years ago. I continue to struggle with that on a daily basis only this time it is with medical and school environs.

Here's the thing. This whole business has been hard on me. I went into a depression over the past few weeks. Figuring out school for next year plus the fact that due to our school choice she will most likely have to change daycares and I LOVE our current daycare and do not want to leave. Not knowing whether she'll be best suited for Young-5s or Kindergarten and whether IEP accommodations would make a difference in that decision. I need to make all of these decisions final in the next month or so because if we move to the new daycare I want her to spend the summer there getting used to the new environment before school starts in the fall. Hoping she makes these transitions more smoothly than is her customary way. Looking ahead to our next cancer check which will send her off the deep end again behaviorally when we haven't quite pulled her back to "normal" from the neurology appointments yet. I need to find out what type of therapy she can/will get into and when that will happen so that I can determine what my own work schedule will be and hope like hell my company is Ok with it. As you can imagine, I have used the "I need to be gone because my daughter..." excuse a few times in the last five years and that might be wearing thin. I need to keep my job since our family uses my company's health insurance.

What therapy does she need? Where can she get it? When can she get it? Will the time and place of this therapy threaten my job? How are we going to pay for the therapy ? It cannot take place during school hours as that needs to be a priority.
I want to cry.
Why me? Why her? Hasn't she been through enough? Haven't we all been through enough? Just as Julie asked, having been through everything we have been through, aren't we deserving of an easy path now?
Yes...But...this is the path we are on, so we need to keep going. Can't really turn back now can we?

Next week should bring at least a couple of answers. We will have the parent-teacher conference with her Pre-K teacher and get her recommendations for next year. She will go through her first of two kindergarten screenings. Hopefully we will get the results of the EEG so we can begin looking at treatment options. I will feel better when we have a plan in place. Right now I feel like I am drifting and don't know which way to turn.

This is all a very verbal outpouring of what has been going through my head lately. Pictorially it would look like this. I am done stressing/depressing about it. I will get answers as they come, make decisions from there and hope for the best possible outcome. *crossing fingers*


VHMPrincess said...

Wow. I am sending good thoughts and prayers for all 3 of you...If anyone can face all of this, it is you - you'll get her what she needs, the adorable little thing that she is.

Thalia said...

That is a tough hand of cards you've been dealt as a family. Like VHm I'm sure you will manage, but I'm equally sure it's a very tough place right now. Hang in there.

Lala said...

sisters in depression we are. I'm
going to take that diagnosis of spastic diplegia back to Ronan's doc.

I have no words for the rest of it, I'm lost too