PT & OT here we come...

Things do continue in the same fashion as they have been, unfortunately. Her baseline is officially changed now from mediocre to crappy. On top of that she is having a harder time with shortness of breath, fatigue, and eating. Even at this point she has not gained back the weight that she lost over this last illness and she’s coughing more. Something new that does come up is a physical therapy evaluation. This is done for a few reasons, her fatigue, the evidence of muscle weakness and/or wasting, and her overall wellness level. We meet with a wonderful PT, Mrs. J, and after a few sessions with Alana she requests that another gal, an OT who works with children who have lung/breathing/heart issues sit in and give her input as well in regards to some issues Mrs. J is seeing in regards to Alana and her breathing issues. I am fine with this because heck, maybe she will notice something that can help.
Here is what they had to say in their report to the doctors:

“Alana is a bright and engaging 5 year old little girl” (okay, had to put that in here that that was the first thing they said =)

“Alana had difficulties coordinating co-contraction of her trunk for stability when attempts were made by therapist to elicit. Endurance is quite poor as a 5 year old child should be able to participate in an hour of sub-aerobic physical activity without immediately falling asleep upon cessation. However this lack of endurance doesn’t appear to be simply due to de-conditioning as Alana tries to be an active child. Alana appears to be a very busy active child with endless energy. However, it seems to this therapist that it is easier for Alana to remain in motion then to do stationary tasks that require core stability and subtle grading of muscle control.”

“Alana does demonstrate difficulties with coordination of her body following several minutes of sustained activity. At today’s evaluation Alana was propelling herself around the pool wearing floatation with nice coordinated movements of her upper and lower extremities initially. However, following 2.5 minutes of sustained activity Alana was no longer able to coordinate her movements and resorted to flailing type movements of her arms and legs to attempt to continue the activity because she wanted to”

“Alana demonstrates 85% open mouthed breathing but with increased demands she closes her mouth and creates a valsalva to increase intrathoracic pressure thereby increase her strength and stability. Her cough is non-productive with limited intra-abdominal pressure. Her mother reports that she will cough so long that she turns cyanotic. When asked to take deep breathes or after breathing increased for activity demands Alana demonstrated paradoxical breathing, this means that she activates her diaphragm on expiration not inspiration, limiting the volume of air she can inspire.”

Summary

Alana demonstrates:
1. Significant low tone especially abdominal muscles, also indicated by mild rib flares.
2. Mild to moderate dysregulated autonomic nervous system: indicated by inconsistent pulse, oxygen saturation levels not tied into activity needs, erratic temperature regulation and breathing pattern (several quick/shallow breathes and then large breath).
3. Inefficient breathing patterns. The diaphragm, intercostals, external/internal obliques, rectus abdominis are the predominant muscle in efficient breathing patterns doing approximately 60% of the work, while accessory muscles such as the paraspinals, pectoralis muscles, serratus anterior, scalenes, SCM, and trapezius are recruited for increased oxygen needs. Alana also demonstrates paradoxical breathing.
4. Possible undiagnosed venous return disorder. Red flags include constant movement without sensory seeking quality, desaturation without movement, and sitting down/flailing limbs with fatigue.

They did her SATs before and after PT and before (without O2) she was at 94%, after she was 86% and stayed that way for awhile. This was a very clear indication to us that she needed to be on O2 more than we had been putting her on it. This report went to her doctors not only here, but in Cincinnati as well. Within a day we heard from the pulmonologist in Cincy to discuss this “significant change in her status” in regards to her O2, muscles, and fatigue. Well HELLO! We’ve only been telling you she’s been having these issues for almost a year now!

Things do come of this though; Alana is put on O2 with activity and during PT and OT (OT was recommended as well due to her sensory issues—screaming, hands over ears, fight or flight reactions to car washes, some restaurants, music class, etc. and tactile issues to clothing and other), she is now going to PT once a week and OT once a week for an hour. The plan is that once her strength is increased that we will start working with the other OT in regards to her breathing issues to try and get her to utilize her lungs better, maybe in about 3-4 months is the goal.

I’d like to say I was surprised with what the OT & PT tell us, that she has the emotional maturity of a 2-3 year old, that she is hypotonic (low-tone), her O2 needs were greater than we appreciated, and that she needs long term, 12 months or more, of PT services. I would like to say that I didn’t see any of those things but I did. I just couldn’t seem to make them better for her—again.

There are still new things going on with her every month. It’s all day by day and minute by minute. She is such a strong and smart little girl, totally like her sisters in those regards. Rock stars the whole lot of em! We are finally to the end of February and we have Shaylins birthday in March to look forward to and boy, are we looking forward to some normal fun times! We all need a break and if all goes well Shaylins party will just be the ticket for that.