Well last Friday I was a bit upset as I was feeling too much of a stall in trying to figure Haven out and with no where else to look. It drove me crazy all weekend. I just couldn't break the funk even by Monday I was still going crazy.
I had been looking at the brain and checking it out and remembering stuff from school. Most of the terms were familiar to me and I knew the location of each spot I just didn't really know how it functioned. So I took some pictures and drew on them and "dissected" them on paper. The brain is a ridiculously awesome organ and there are so many facets to the brain. But with ROHHAD I knew it was a big part of the Hypothalamus and the Brainstem (Pons and Medulla Oblongata) that were the focus. I started researching different symptoms of Haven's ROHHAD (as it is different onset for each child) and where each piece came from in these two sections of the brain.
After a while it hit me - make another spreadsheet and drive Oncology crazy! So I did and I wrote up a detailed email - well as detailed as a non-medical person can be. I emailed it over to him around 11pm last night. I didn't expect him to answer although he has many times before at that time at night. Even while I was in Honduras he was emailing back to me after 10pm. His response was that he was quite impressed and would need time to review my email and spreadsheet.
That was all I needed to hear. It's probably my fault as I have left Oncology alone for a while and let them do their thing. We've only discussed school and Kennedy Krieger Institute through emails but nothing particularly pertaining to Haven's ROHHAD. Well I ended up staying up until 1am emailing him and researching more and more info.
What I am sharing below is just ramblings from my mind about what I feel with Haven's ROHHAD and her treatments for the past two years. This is nothing relating or professionally done by a medical person. But it does help them because I know with 100's of kids they don't have dedicated time to always spend it researching my baby. I've sent graphs and spreadsheets throughout the years and many have come in good use. It can never hurt.
What is the Hypothalamus?
- a portion of the brain that contains a number of small nuclei with a variety of functions. One of the most important functions of the hypothalamus is to link the nervous system to the endocrine system via the pituitary gland
Can you believe something so small in your body can take over so many functions of your body? Obviously it is not shaped like an almond but for my demonstration it is. It is also not positioned like an almond but in simple terms it's easier to discuss. I broke it down in to 6 categories - but it breaks down in to many more depending on how far you want to go but this is just the overall and how it relates to Haven.
1. Anterior Medial:
- Urine Output
- Heart rate
- Blood pressure
- TSH - Thyroid Stimulating Hormone
- Circadian Rhythm
- Vasopressin - water absorbtion, sodium levels, glucose
- GI Tract
- Neuroendocrine (including NE tumors)
- GHRH - Growth Hormone
- Dopamine (release of Prolactin)
- Pupillary dilation
- Blood pressure
- Hunger (when stimulated causes extreme desire to eat)
- Pain sensors
- Facial expressions
- Eye movement
- Blood pressure
Although at the time I was frustrated because I expected to see a miracle immediately and it has been slow going. I can now say that after almost a year since Hi CY - living in the isolation housing seems like it was a dream - I can now see everything that has changed in Haven.
Where do I see the change? Position 1 and 3 of the Hypothalamus. My baby is now back to being potty trained, her heart rate is at a normal rate, her blood pressure is stable and she hasn't been on medication for 6 months, the hot foot/cold foot has a much less difference in temp, she doesn't just sit and sweat anymore, sodium levels are NORMAL! :) She hasn't had normal sodium levels in at least 2 years.
GI Tract - she has minimal constipation and is not on medication anymore for this. Growth hormone was gone for 1 1/2 years - she just stopped growing - now she has grown almost 4 inches since July 2009. We are still fighting Prolactin - but I will keep trying to figure this one out.
With the brain stem - I now know the Pons was the first to go on Haven and the first I ever saw signs of ROHHAD at age 1 with no pain sensors and no tears.
I am hopeful that this is the end of Haven's deterioration. We continue to scan and monitor and run labs, as well as, me keeping records and journals of Haven's changes. But as her immune system starts to come back in to full gear I am excited to see what we will notice in another 6 months. But there is no guarantee anything will stay as is with this unknown disease.