Community› The Bump Message Boards› Special Needs
Special Needs
New Discussion

NO answers and frusturated....

mommy06mommy06 member
in Special Needs

I know you girls have heard alot from me lately.  I am really having a hard time dealing.  My dd is still in the NICU seeing doctor after doctor and NO ONE can give us answers.  We know she had diabeties incepitius and possibly a growth hormone deficiency, but thats it!  The doctors keep poking and poking to find out whats "wrong" with her.

I am to the point that I don't really care what is "wrong" with her I just want her HOME!  She is now breathing on her own, moving tons more and had made HUGE progress since birth.  I know she cannot come home until we get feeding down and I know she needs to be there now BUT it seems like she is going to be there until they find something "wrong" with her!  I am sad, frusturated and overwhelmed.  I just want to scream!!!!  I don't know if I can handle more bad news or NO news. 

How do you continually go to doctors and continually get bad news or NO news and move foward??

 Anyhow, thanks for reading and letting me vent!

Lilypie Fifth Birthday tickers Lilypie First Birthday tickers imageimage
Report Reply to Post

Re: NO answers and frusturated....

  • lauraandleelauraandlee

    DI, GH deficiency and low blood sugar could be panhypopituitarism (which is what my son has.  He doesn't have DI, but a lot of PHP kids do, as it's controlled by the posterior pituitary).  Ask them about it.  It's rare, but have they done an MRI yet?  They should see if she has a pituitary gland, or if it's malformed. Do they have a pediatric endocrinologist that has seen her? 

    My son had loads of tests during the time he spent in the NICU, and it was so rough.  By the time we went home, we did have a diagnosis and a team of doctors, medicines and a plan to manage his condition. 

    It's so frustrating not knowing, and I'm so sorry you're having to go through this.  Big hugs.  

    Our Little Fur Family
    image
    My Three Sons
    #1: 2.06 #2: 1.08 #3: 9.10

    DS #3 diagnosed at birth with panhypopituitarism - lack of pituitary function. He is treated with thyroxine, hydrocortisone, growth hormone and testosterone.

    Report Reply
  • Loading the player...
  • mommy06mommy06 member
    Thank you! I just read your blog! Yes, they have done an MRI all looked normal. I never really asked about the pituitary gland because at the time we did not know what her issues were. It seems most, if not all, of her problems have something to do with lack of hormone production from the pituitary gland. I do believe she has one and it looks normal it just dosent produce the correct hormones. I am definately going to ask more tomorrow. Does/did your ds have low muscle tone and trouble bottle feeding? Is everything manageable with meds? Will he lead a relatively normal life? Can you recomrnd any websites or books?? Thanks a million, this is all so new and overwhelming!!
    Lilypie Fifth Birthday tickers Lilypie First Birthday tickers imageimage
    Report Reply
  • lauraandleelauraandlee

    I'm still learning about it all too.  DS doesn't have any other symptoms, than what's directly related to the lack of hormones.  He takes daily oral meds (thyroid and steroids) and daily growth hormone shots.  DS has a pituitary, the two halves just never grew together apparently.  They were able to diagnose him based on a small penis (grew with testosterone shots over 4 months to normal size) + very low blood sugar (19) at birth and then the MRI. 

    It's not curable, but it's totally manageable, and we just have to keep an eye on him because he can't react to stress normally (we have to triple his steroid dose when he gets a fever, has surgery, etc).  I'm so used to it now, and even my 5-year-old could tell you exactly what his brother gets every day. 

    His life is going to be totally normal, save for the few issues related to his meds.  He did not have low muscle tone or a poor sucking.  He did have trouble gaining weight (but that's not necessarily related to his PHP, all my kids had trouble, so we supplimented for a few months, but now he's 100% breastfed (plus solids).  

    I found the MAGIC foundation to be incredibly helpful, and they have a yahoo group for people diagnosed with PHP and their families.  

    PHP can come with many other things too, it may be other issues related with the brain causing some of her other symptoms.  I hope you're able to get some answers and that you can take your daughter home very soon.  

    Our Little Fur Family
    image
    My Three Sons
    #1: 2.06 #2: 1.08 #3: 9.10

    DS #3 diagnosed at birth with panhypopituitarism - lack of pituitary function. He is treated with thyroxine, hydrocortisone, growth hormone and testosterone.

    Report Reply
  • KYmama9286KYmama9286 member
    Based on the growth hormone deficiency I would suggest look at the Magic Foundation info also-- DS has a genetic growth disorder called Russell Silver Syndrome. He has blood sugar issues (hypoglycemia though not DI), he also had some mild tone issues and has LOTS of troubles with eating. Have you had a good endo consult? What about genetics? Those would be the top 2 Dr's that I would be wanting to see if I was in your shoes. Best of luck, hopefully your LO can come home soon!
    Image and video hosting by TinyPic Lilypie Third Birthday tickers Lilypie Second Birthday tickers Lilypie Pregnancy tickers
    Report Reply
  • mommy06mommy06 member
    Thank you, thank you, thank you! Yes we have had a genetics consult and we have a pedi endo. We are at a wondrful hospital. Our dd has seen every doctor in the book. After reading some info from the website and " chatting" with you girls I have lots if questions for the endo. Since being diagnosed with the di she has drastically improved, I hope the same happens once we start the growth hormones. We are finally moving in the right direction it is just taking a loooooonnnngggg time. We have been in the nicu fir 17 days and counting. Do you mind sending me your e mail addresses so I can e mail you?? Thanks again!
    Lilypie Fifth Birthday tickers Lilypie First Birthday tickers imageimage
    Report Reply
  • duchess0727duchess0727
    I know you are frustrated - I'm sorry you are going through this.  The NICU sucks and especially when you have a child that they expect has something wrong with them.  I do think they will send your DD home when they think she can handle being out of the hospital.  They generally move forward very slowly in order than you don't have to take any steps backward.  It is really hard but we learned to go into every day with the expectation that we were not going home and then we would be pleasantly surprised when we did.  It was still a very long 3 weeks.  We also left the hospital without any results from our genetic tests so I know they won't make you stay for that.  But if they are concerned about her feeding and growth, they will keep her because if she's not feeding well there, it's going to be even harder at home.  It sounds like the ladies here have given you a lot of good info.  I hope you keep taking steps forward and your little girl is home soon!
    Report Reply
  • Assembly_ReqdAssembly_Reqd member

    We were in the NICU for 18 days and I totally understand the feeling of them holding your baby hostage. 

    The great thing about being in the NICU though is that all those specialists are coming to you! You are not having to schlepp all around town, find parking and go to numerous appointments with a newborn. 

    This was the one win-win thing about NICU for me. The follow-up appointments in the first year once we got a dx were a major PITA. I cannot imagine leaving the hospital earlier than they were ready to release us and then having to go to an opthamologist, cardiologist, geneticist, feeding specialist, neurologist and all the other "ologists" with a newborn. At least with NICU you are getting a continuity of care and someone looking at the big picture with you. HUGS!!!

    WAY 2 Cool 4 School


    image
    Report Reply
This discussion has been closed.
Choose Another Board
Search Boards
"
"