hid pediatrician is going to keep gage on ......: ) - Epilepsy Message Board

gagcas · 06-17-2004, 12:42 PM

hi all,

well i think todays visit with the ped. was the best news i have had in a long time. i have never in gage's 5 years of age seen her this mad. she was so discusted with the old neurologist that she was trying to call her to see basically what crawled up her behind

. now, also she takes her son to this same neuro for her son who also has epilepsy. so i feel that wont be a very nice visit. the ped. said after all the people she has sent to her and what not she has the bad reprore(sp) to do this.

she has a feeling that the neuro didnt even bother to look at ALL of gage's reports and results. because she would have never classified him as a severe and complex case. then she would have seen that everything else was normal. only the siezures and those only seem to be while he is asleep, or tired. and she thinks she just didnt want gage's as a case. ignorance is bliss i guess.

anyway the ped. is just going to see gage stricly her as far as the siezures are concerned. she feels he is doing really well, and unless we start seeing breakthrough episodes, he is good on the dose of zarontin that he is at now. and if we do have more breakthroughs, than she will send us back to pittsburgh for another VEEG. other than that we can do them here. and she is very confident, even though there is that chance it could progress, that he will grow out of them. she will be monorting his progress and what not every 3-4 months or so. just to touch base with me.

so all in all it was a good day. this pediatrician is absolutely wonderful, and i am now content with everyhting i guess. just need to get a card in the mail for the referal girl at the ped. office because she went through h***, trying to get him in to this neuro office only to have it come back that no they wont take him on. im going to give myself a little happy dance after all this horse cocky. lol.

i had to go and edit this myself...they need some way to do a spell check on here....for the REALLY bad typers like me.....

kayakmom · 06-17-2004, 04:17 PM

I am SOOOO glad that you have this pede!! She sounds like a real gem! It is great that she will follow his care and send you to Pittsburg only if things change!

I sure hope the Zarontin keeps doing well and that he will outgrow it all.

So good to see you end that frustration of the old neuro!

I bet you are breathing MUCH easier now and many sighs of relief!

tkdmom96 · 06-17-2004, 11:07 PM

Hey Jennifer,

Sorry I didn't get a chance to post regarding the garbage you got from the neuro. I read the post and forgot to leave my support...sorry!

I'm glad to hear you have things ironed out and that you will only have to travel "if need be". We are fortunate to live 15-20 minutes from our Children's facility (for the E clinic), but I know of many that travel hours just to have a regular apppointment. We are truly lucky.

I pray that Gage outgrows his E. Always be hopeful...we were for Katie, unfortunately it wasn't her case, but there are many kids that DO outgrow theirs.

SOoooooooooooo happy dances for clearing the air!

Hang in there and keep your chin up high, at least to the point where you can see where you're walkin'...

Vicki

LisaGuthrie · 06-18-2004, 09:48 AM

Happy Dance

Jennifer, I had a full reply ready for you on your ealier post, and we lost power...

Summer storms over the bay... gota love it!

I am so excited for you that Gage's pede will work with him, and the fact that she has an E child as well can not hurt!

You are better off without a dr. like the first one. My earlier response was pretty much don't waist your energy and money on a person who will not invest 15 min to review a patient file. You are better served driving 2 hours and having real answers!

Glad they think he will out grow this! That has to be wonderful news! IT's still our hope as well. Only time will tell!

HUGS to you both,

Lisa and kids

gagcas · 06-20-2004, 06:01 AM

thanks guys. i think i am still elated over the whole deal. his pediatrician is a real gem, and your right about not worth it if they cant look. who knows what she would miss in the actuall office visit if we weret o go back to her. i mean i was so mad becasue all the time the dr. office and referall girl, and i had wasted on waitnig to hear what her answer was, and then to turn around and just blow it off like that, i was ready to make a complaint to someone if i knew how to go about doing it. this neuro has it made. she is the only ped. neuro around here so she can pretty much pick and choose who she will see. thats how it has to be becasue what dr. in this day and age would pass up a cash paid office visit. oh well im better off now where i am at with gage and his pediatician anyway.i do have to tkae gage to get bloodwork done to check the medication level and cbc counts and what not but he is getting better about doing that. those are the tests the neuro in pittsburgh wanted but i waited to talk to his pediatician. but thanks for all that let me vent. lol. hope everyone enjoys there weekend.