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Vet, Pulmonary, Therapist, Oncology, Endocrine and Child Life

Posted Mar 23 2010 9:29am

Well I definitely made great use of my day off work yesterday. Only one of the above in the title did not belong to Haven! :) Deezy had to be spayed yesterday. She is recovering well and Haven has been hand feeding her...SPOILED!

After taking Deezy to the vet at 7:30am we headed to the hospital. We started our day with Pulmonary and reviewing Haven's latest sleep study and setting up our follow-up appts.

PULMONARY: sleep study - my main concern is Haven's CO2 levels
  • February 2009 - CO2 level at 49 - was told that jumping to 50 would take a lot and they didn't expect it.
  • July - September 2009 - Hi CY treatments and Isolation
  • August 2009 - CO2 level at 50 - doctor said he will start being concerned at 55 and she will be watched closely.
  • October 2009 - HD Dex and IVIG
  • March 2010 - CO2 level DROPS to 45 - doctor extremely happy and not expected. 35 - 45 is normal!
Pulmonary agrees and is doing more research on sleep instability linked to respiratory syndromes. Possible theory is that her sleep walking kicks in when she has a good length of pausing in her breathing. This could be keeping her levels at a normal level and may be why we are seeing an increase in sleep walking coinciding with a lower CO2. Who knows....but it's a good theory. I honestly don't mind sleep walking because I know she's breathing - I can hear her yelling!

THERAPIST: Honestly this may be good for some but I'm just not sure it fits in with us right now. Haven has no anxiety about doctors, needles, procedures. She's been doing this since age 2. Maybe it would've been better in the beginning but I'm not sure where it will help her now. The only issue Haven has is leaving the house but once she's out she's fine. I don't think trying to treat her like a "normal kid" at this point will be beneficial....the girl is already too adultlike.

ONCOLOGY: Received a call from them regarding Haven's MRI.
  • Brain: clear and perfect --- as with all of her Brain MRIs - no tumors and anything out of place
  • Abdomen: tumor still present but has not changed shape or size. Very stable and will be monitored as usual.
  • Pelvis: perfect nothing out of the ordinary and nothing new showing up
IVIG is coming up and another round of immune testing. We are currently working on getting Haven in to school. There are a lot of factors here.

ENDOCRINE: This was our 6 month follow-up visit and through emails we had discussed other tests I wanted to run.
  • May 2009 - Haven had no growth. She hadn't grown in 1 1/2 years. She was a negative on the growth scale and was about 38 inches tall.
  • July - Sept 2009 - HI CY treatments
  • September 2009 - Haven shows growth potential - grew to 39 1/2 inches tall - no growth hormone shots and testing again in December
  • October 2009 - HD Dex and IVIG
  • December 2009 - Growth hormone tested - show an increase
  • March 2010 - Haven has GROWN now to a solid 43 inches tall!!!!
I had discussed doing Cushing's testing again - after talking with the doctor - Haven has shown tremendous growth and this isn't usually the case in a Cushing's child. She also didn't have the red striae noted on Cushing's patients. Doctor again said IF I really want to do the testing he will order the salivary cortisol testing and if I really wanted he would do the other tests but it requires a lot from Haven and there really isn't any evidence leaning towards Cushings. So I have decided not to test and will review again in 6 months.

Prolactin - seeing the brain MRI showing no tumor present at the Pituitary tells him it just confirms the mis-communication between hypothalamus and pituitary. He will be concerned on this hormone around age 9. Until then they will keep monitoring.

Leptin/Adiponectin - As we can guess - Haven will have a high Leptin level - she's obese. But even is she is Adiponectin deficient there is nothing that can be done at this time. To run the testing would just be for the books and nothing done with it. So we will let this go for a while.

Brain Stem - I wanted to discuss this but Endo doesn't work with the brain stem and was unable to answer my questions. He is consulting with a Neurologist for me and possibly will set up a meeting with Neuro at some point. But as he said - if there is nothing Neuro can do about it and can't fix it then it's probably not beneficial to have them on the appt list when they can just review her results in the system.

CARDIOLOGY: Happy to report!!!!
  • Before all of our treatments Haven had been on BP medication for 2 years --- she was taken off in September 2009 --- BP has stayed around 109/65 and no medication!!!!!!!
  • Before all of our treatments Haven's resting heart rate range was 140 - 165 ---- she is now consistently staying between 80 - 90!
CHILD LIFE: We're working on getting Haven in to school a few hours a day and with her currently home school teacher joining her. This will help her slowly get in to the rhythm of school and not overwhelm her. There is a lot going on here first before we finalize everything.


As you can see I am very happy! I'm very proud of Haven for kicking butt the last 4 years and I'm very thankful to our doctors for fighting to do these treatments for her and now we're actually seeing some results! I'm looking forward to our 1 year mark and hopefully a full immune system! :)

Love to all -----
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