Hypotonia

Hi All,

Thanks so much for responding to my post yesterday about Connor's upcoming neuro appt. Your responses were very helpful in getting me prepared for my meeting with the doctor. The doctor came in, saw my list of questions and said "I feel like I'm about to be interviewed by CNN."

However, the appt. turned into a DISASTER. Connor came down yesterday with the stomach virus that had been ailing my daughter for over a week. He threw up, ran a fever, and then was miserable. Today he woke up without a fever, and seemed tired, but held everything down. Since he can't walk or get into anything, and I mainly needed to speak with the doctor about Connor's recent tests and febrile seizures, I decided to keep the appt. instead of waiting another 3 months or more to see the neurologist.

Connor was fine in the waiting area. As soon as the doctor walked into the room, Connor started to scream. Louldly. Unrelentingly. NOTHING I could do calmed him down. I thought maybe he was experiencing stomach cramps like my daughter and I had when we were ill with the virus. The doctor was not happy about his state at all.

I explained to the doctor (who has already seen Connor 3 times since January) that Connor had been hospitalized for "complicated febrile seizures" and that when discharged, they told us to follow up with his regular neuro. The doctor said, "well the MRI and the EEG were fine, so why are you here?" At that point, I almost burst into tears along with Connor.

It was impossible to talk to him because of the screaming. Also, he was unable to locate any of Connor's blood test results, which I had drawn at his practice because I thought that way he could look them up no problem. He told me he didn't have time to track down the test results, that his nurse wasn't there today and that he'd have her do it.

He never examined Connor. I didn't want him to because Connor might have been contagious, but he never even mentioned that he would.

He said there were a lot of loose ends that need to be tracked down. Let me get this straight - these are tests that HE ordered. He can't track down the results of tests done in his practice that he ordered. The neuro we saw in the hospital was in HIS practice. They told us our doctor would have access to the MRI and EEG results because they were in the same practice. Why does it have to be so HARD to get answers?

Then he said that Connor's previous MRI showed he had an abnormally narrow corpus callosum. Last time we met with him, he said it may or may not be associated with his hypotonia. This time he acted as though it was a foregone conclusion that Connor's MRI had not been normal in Feb. He said that this was a "clue" about Connor's condition.

I feel so sad - I really wanted to make this appt. but never would have done so if I had known Connor would scream through it and make it virtually impossible to speak with the doctor. Then I am frustrated by the fact that the doctor is so unprepared anyway.

After picking up my other 2 children from 2 different schools, I came home and let Connor sleep instead of taking them to ballet and soccer. He needed a break. I feel as though nothing I do is good enough. I can't take care of him, get answers, take care of them, letting myself go by the wayside is a given. I cried and cried and cried. This is so difficult.

Thanks for listening. I feel better just writing all that. :-)

HUGS.  Sounds like you had an awful day.  I hope that your Dr. will do his job and locate the test results so that you can get some answers.

Good luck, and I hope that Connor feels better soon.

Lisa

I'm so sorry that this appointment turned out this way:(

I'm sending you big, big, big  (((((((((((((((((((hugs)))))))))))))))))))) although I know that other than saying "I know what you mean, I know how you feel" there is no much I can do.... too bad.... :(

you are not alone with your fight against the world... I don't know what it is about neurologists but I find that many, many parents have problems with communicating with them...

Anita has a "team" of 3 neurologists and for a month now I'm trying to get an answer to my e-mail and... nothing...

it's like they want you to come to the office but, please, don't ask any questions... and do NOT Google because that make you want to ask even more questions.... ok, so these are the test results. oh, where are the tests results????? my nurse will call you (but we know they never call until you bug them really hard) so what about today?????

my question is: how much did he charge for the visit from which you've learned nothing?????? totally unprepared???? how is that even possible????? you wait months for the appointment and he is not prepared for it????? that's unacceptable!!!!!! I want to scream for you and yet.... most of us just sit quiet and swallow it because we have children with problems and who do we turn to????? who is going to help us figure it all out????

I found out  that developmental pediatrician doctor may be a lot of help... maybe you could try it? maybe you will get to the one that is more human? 

I've recently started asking Anita's regular ped for help (thank goodness she is fantastic and caring and she actually wants to help) and she is ordering tests for us that could be ordered by neurologists (but, do they care??????)

maybe your regular ped could help you out a little? maybe he could advocate for you and get in touch with the neurologist on your behalf to see what the next step should be???

but also, maybe you need to look for a different neuro that would come prepared for the visit???? (and I'm not a good example here because I stick with the same although they obviously ignore me and my daughter - but other than Children's Hospital there are not really other pediatric neurologists here in the area that I know about)

I'm sorry you and Connor had such a bad day... you did right taking the afternoon off... the other two children will be ok and loosing this or that activity will not change much their life... but you needed this time to cry and be angry and be sad...

I hope you will find the person in medical world that will be willing to help you to "figure out" Connor....

(((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))

lots of hugs to you. i've had some appointments like that myself. you build your hopes up, you expects something will come of it, arrange where your other children will be, take time off work, whatever it takes and then nothing.  worse than nothing.  eveytime i go see a dr for my girl i feel like more stress than i did when i was taking my university entrance exams or going for a job interview or anything else.  i get everything prepared, my thoughts my questions to make sure i make proper use of my time and turns out the neuro is unfocused, unprepared, not mentally there. 

can you find another neuro?  if not can you call this one or e-mail him and tell him you were not pleased and would like to see him again soon when he is more organised? just because they're drs doesn't mean they aren't accountable.    does he answer to someone?

as for Connor crying through the visit, drs who work with children should be able to handle that.  i'm sure your child is not the first one to cry and that doesn't mean he shouldn't get the care he needs or not be examined.  the dr should be used to crying children and know how to handle them. 

is he feeling better?  hope he is and hope you are as well.  i'm sure you'll figure everything out and get the answers you need.  you're doing great it's just that some days are so so hard...

Alta

(((hugs)))

It's so frustrating when appointments go like that, especially when you've waited for ages.  Our neurologist is like that, we wait for ages to see him and then when we do he doesn't seem to have read Isaac's notes.  Having a child with Hypotonia is so hard.  I find I put my heart and soul into making sure Isaac gets all the stimulation, physio etc to make sure he gets his full potential.  Anytime left over is for Jeremiah and there is none left for me or the housework.  I know it's easier said than done but try not to neglect your own needs.