Grace's journey

Spina Bifida Clinic Paperwork

So we got our letter from the Spina Bifida clinic nurse about the recommendations from each doctor that we saw on our trip to Oakland. All in all, sounds pretty good!

List of Recommendations:
Neurology-Atefeh Hosseini, MD

• Neurologically stable status post tethered cord release.
• Developmental delays; has appropriate therapies for now. If feeding issues continue, consider OT or Speech referral for feeding.
• Mild speech delay noted. Recommend Audiology referral.
• History of febrile seizure. Reviewed seizure first aid.

Neurosurgery-Dachling Pang, MD

• Gross motor development continues to progress. Small spinal syrinx from T12-L2, had gotten larger per last MRI. Will repeat MRI in next several months--by summer at latest.
  
• Will see back in 4 months.

Orthopedics- Dale Townsend, MD

• Hips are normal. no recommendations at this time.

Physical medicine and rehabilitation- Benjamin Mandac, MD

• Agree with plan for hearing test.
• Continue present therapy services. Recommend do not use jumper or store bought walker.

Physical therapy- Merav Thomas, PT

• Overall doing well. Discouraged getting a walker at this time, as increased standing and cruising time is the best practice for walking. Encourage mom to increase time in standing and to work on squatting to increase lower extremity strength. Continue with current therapy.

Occupational therapy- Heather Horn, OT

• No current OT needs. Continue to check in with OT at Spina Bifida Clinic as Grace grows, and functional demands increase.

Speech Therapy- Casey Rider, SLP

• Continue with Early Intervention services through Regional Center. Suggested adding speech therapy to services when Grace reaches 18 months. Family to follow up with case worker. Reviewed communication milestones and language stimulation activities.

Urology/Nephrology- Anand Krishnan, MD

• Neurogenic bowel, risk of neurogenic bladder. No reason to suspect high pressure, poor compliance bladder, or vesico-ureteral reflux based on clinical history. Normal ultrasound.
• Continue miralax for neurogenic bowel.
  
• Would consider baseline Urodynamics study at 2.5-3 years of age (as long as she continues to be asymptomatic and has normal serial ultrasounds) to get baseline assessment of continence potential.
• Recommend follow-up renal and bladder ultrasound.

Nutrition- Andrea Curran, RD

• Possible lactose intolerance. you may use 8 oz Lactaid Whole Milk plus one scoop or packet of Carnation Instant Breakfast in place of Pediasure.
• Increase calories of foods consumes.
• Use full fat yogurt.

Nursing- Duane Marble, RN

• Begin bowel clean-out using Miralax, one capful twice per day, until signs of success like last time. Once cleaned out, begin daily dose of Miralax. Start with 1/2 capful per day and titrate as needed.
• Recommend obtain Ilex barrier cream to protect skin under diaper.
• Ad discussed, Grace will be considered to have a latex sensitivity by virtue of being born with a neural tube defect in the form of retained medullary cord and sacral agenesis. Consequently, she is at increased risk for developing full-blown latex allergy over time with continued exposure to latex products.

All in all, not too much information that we haven't had before. I enjoyed going there, mostly because all the doctors were so helpful. I didn't feel rushed, or like my questions were stupid or anything. We are supposed to go again in July, but our prior plans take precedence, so we are going to reschedule.

I'm really hoping for some normalcy soon with her bowels. She hasn't had a void for 2 days. I really thought we were getting on top of it. So I still feel like I'm on the roller coaster of either giving her not enough and then we have to do the bowel cleanout, or giving her too much and she's a faucet. I'm really hoping for that happy medium (I've never been a fan of roller coasters!). Having a child with this many issues...sometimes I forget to think about myself, and caring for my needs. But that's what all mothers do. Their child comes first, and I wouldn't do anything differently! I'm healthy (for the most part) and though she is healthy (per say) she still has these things that are never going to go away, and so I'd rather learn how to handle them and get some type of plateau before she gets too old! So I'd rather put myself on the back burner now and just keep on going, putting my "shoulder to the wheel and pressing on" rather than have the mindset of, "ah, whatever". She's such a sweetie through all this...has the strongest soul I've EVER seen.


Amanda