Well we had a GREAT meeting with Haven's Pediatrician, Dr. Cooper on Wednesday before the holiday. We spent about 2 hours with her - amazing how fast time flies when you have so much to talk about. Really I didn't know what we were going to do at this meeting and I didn't know where to start. But once we started talking it was easy.
We received A LOT of information and copies of recent articles written by other doctors about Haven's syndrome.
We received official copies of Haven's medical records with our latest meetings of doctors. We also received her last sleep study report. I found out things I didn't know just last Wednesday. No one had told us some of this stuff. So I'm a bit shocked.
The next few posts are very much like going to med school...or at least I feel like I'm back in undergrad classes! Read it if you would like - it helps me to put things down and do a cross comparison. It's like making a list and checking it twice.
I can't believe what we didn't know or were in denial of. Thank you Dr. Cooper for all your help and thank you to Nurse Peggy for hanging out with Haven for 2 hours and playing with her!
Friday, November 28, 2008
Wednesday, November 12, 2008
A Diagnosis.....we were not ready
I just found this on the Internet today and it seems to have been written in the early Spring of 2008. It is all about Haven. The doctor on the front is Haven's Endocrinologist - Dr. Cooke. Dr. Ido Paz-Priel is Haven's Oncologist.
If you would like a copy of the article please email me and I can send you a PDF. It seems as though they actually had her condition figured out last Spring but we were not aware yet.
A link to the article on the web: CLICK HERE
Haven's article is on page 4
Tuesday, November 11, 2008
Taking Charge....
So - there are two ways we can do this.
1. We can sit back and go down with the ship
or
2. We can get off our butts and fight
This past summer I went down fast with the ship and ended up with an almost severe mental breakdown and was in the hospital for a possible heart attack. After Monday's meeting and being depressed for almost two days I decided I do not have time or energy for that and Haven needs everything I can put in to this.
There are only about 27 cases of this disease known. That's not thousands or even hundreds - just 27!
Yesterday I did a lot of research on this syndrome they are saying Haven has. I won't say it yet because I personally don't believe she has it. What I know about it:
1. Weight increases rapidly around age 2 (Haven gained 25 lbs at age 2.4 and another 12 lbs at age 2.8)
2. Hypothalamic Dysfunction around age 3 (Haven lost a lot of natural functions around age 3 - had her 2nd MRI after her 3rd birthday)
3. Immune issues around age 3.5 (Haven's immune system started attacking her brain around age 3.5)
4. Hypoventilation problems around age 6 (Haven has had sleep studies and they were not too off but were off a little)
5. Fatigue
6. Decreased sensitivity to pain - this is weird and we've always told doctors about this - she does not feel pain and can withstand multiple needs put in her veins all over her body.
What Haven doesn't have
1. Growth issues - although she has not grown any since Nov. 2007 - we believe this is due to the high level of steroids she is taking
2. Adrenal failure - Haven's kidneys are fine
3. Hair and skin changes - we believe due to chemo and steroids
4. Cold extremeties - Haven was actually was fine before surgery. She now has one really hot foot and one really cold foot.
I have finally found another mom that has a child with the same "diagnosis" as Haven. I emailed her and heard back from her this morning. I'm excited to talk to her. She sent me her phone number and I hope to connect with her this week to compare notes.
1. We can sit back and go down with the ship
or
2. We can get off our butts and fight
This past summer I went down fast with the ship and ended up with an almost severe mental breakdown and was in the hospital for a possible heart attack. After Monday's meeting and being depressed for almost two days I decided I do not have time or energy for that and Haven needs everything I can put in to this.
There are only about 27 cases of this disease known. That's not thousands or even hundreds - just 27!
Yesterday I did a lot of research on this syndrome they are saying Haven has. I won't say it yet because I personally don't believe she has it. What I know about it:
1. Weight increases rapidly around age 2 (Haven gained 25 lbs at age 2.4 and another 12 lbs at age 2.8)
2. Hypothalamic Dysfunction around age 3 (Haven lost a lot of natural functions around age 3 - had her 2nd MRI after her 3rd birthday)
3. Immune issues around age 3.5 (Haven's immune system started attacking her brain around age 3.5)
4. Hypoventilation problems around age 6 (Haven has had sleep studies and they were not too off but were off a little)
5. Fatigue
6. Decreased sensitivity to pain - this is weird and we've always told doctors about this - she does not feel pain and can withstand multiple needs put in her veins all over her body.
What Haven doesn't have
1. Growth issues - although she has not grown any since Nov. 2007 - we believe this is due to the high level of steroids she is taking
2. Adrenal failure - Haven's kidneys are fine
3. Hair and skin changes - we believe due to chemo and steroids
4. Cold extremeties - Haven was actually was fine before surgery. She now has one really hot foot and one really cold foot.
I have finally found another mom that has a child with the same "diagnosis" as Haven. I emailed her and heard back from her this morning. I'm excited to talk to her. She sent me her phone number and I hope to connect with her this week to compare notes.
Monday, November 10, 2008
Doctor visit
HI
I have decided not to do an update from yesterday's meeting with the doctor. We did not receive very good news at all and until it sinks in and we understand a little more I will not throw it out for everyone. The doctor is going to call me sometime this week to make sure we are ok and if I have any questions.
Currently I am not sure if we need to search for a new hospital or just take what they give us.
Hospitals I am looking to contact are:
UCLA
Ceders-Sinai
St. Jude
As I am not about to take responsibility for my emotions at this time I will stop. Someone has to know something about all this and how to handle it.
I hope everyone has a great week. I will try to have an update by the end of the week.
Thank you all for your love and support of our little girl.
:)
M
I have decided not to do an update from yesterday's meeting with the doctor. We did not receive very good news at all and until it sinks in and we understand a little more I will not throw it out for everyone. The doctor is going to call me sometime this week to make sure we are ok and if I have any questions.
Currently I am not sure if we need to search for a new hospital or just take what they give us.
Hospitals I am looking to contact are:
UCLA
Ceders-Sinai
St. Jude
As I am not about to take responsibility for my emotions at this time I will stop. Someone has to know something about all this and how to handle it.
I hope everyone has a great week. I will try to have an update by the end of the week.
Thank you all for your love and support of our little girl.
:)
M
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