Olivia's 1st Pam treatment

[Guest guest]

Hello to all,

We got home yesterday from Olivia's first Pamidronate treatment

and it went pretty well. Of course she screamed for the IV and when

they had to fiddle with it but she was a trooper. Her side effects

were quite mild, every bone in her body ached which aggravated her

hip fracture, her hip gave out on her twice at my friends house and

she fell on her IV, ouch! Tylenol and motrin kept the pain at bay

and she was in pretty good spirits. She also had a mild fever but

again the meds worked for it. Dr. McGonigle ran the drip with a D-5

as a precaution since loss of appetite is also a side effect (the

one we worried most about) and her appetite was just great!! Yay!

The heparin block was to painful for her since it stings so I was

able to take saline syringes home and flush her IV at bedtime and in

the morning which was very nice since she doesn't scream when I do

it and it was much less tramatic than the heparin.

I wound up getting the flu on tues. though! (treatment was mon,

tues, wed) which was not very nice but I'm feeling much much better

today!!

Since we were in the Hosp. I decided to get the Genetisist med.

records instead of waiting for them in the mail and I was SHOCKED

when I read through them. Our genetisist had been thinking RSS

since her 10 month appt.!! We didn't get the diagnoses until she

was 3yr, 3months old! Which means that she went through 2 full

years of nightly hypo-g episodes for no reason! Eventhough he's now

waivering on the RSS diagnoses she's still SGA and they have quite

similar presentations so even if he would have said SGA we still

could have caught the hypo-g. Oddly enough no one ever asked us if

she sweats at night and we thought she was too hot so she was sweaty

then she'd wake up shivering because she was soaked, we didn't know

it was hypo-g.

I don't want to beat this to death as we know it wasn't our fault

but I'm still trying to get over the shock of it!

I'm not very convinced that Olivia is RSS anymore, I think it's

SGA since she just doesn't have the " look " and she's a pretty good

eater when she want's to be but we're still looking forward to going

to the convention and meeting everyone!!

Sorry this got so long!!

Leah mom to 9yrs and Olivia 4.5 yrs, RSS/SGA??, OI, 19.5lbs,

33 " , lactulose, senokot, zantac, tums

[Guest guest]

hey leah!!

i am glad her first treament went so well and give her a big ((hug))

for being such a trouper about it all!!! i hope you can get the

right DX from dr h at convention and dont beat yourself up as you

didnt know!! you guys are doing a great job with her!! my

christopher eats pretty well as well and dr h did DX RSS for him so

you never know!! talk to you soon!!

jodie

>

> Hello to all,

>

> We got home yesterday from Olivia's first Pamidronate treatment

> and it went pretty well. Of course she screamed for the IV and

when

> they had to fiddle with it but she was a trooper. Her side

effects

> were quite mild, every bone in her body ached which aggravated her

> hip fracture, her hip gave out on her twice at my friends house

and

> she fell on her IV, ouch! Tylenol and motrin kept the pain at bay

> and she was in pretty good spirits. She also had a mild fever but

> again the meds worked for it. Dr. McGonigle ran the drip with a D-

5

> as a precaution since loss of appetite is also a side effect (the

> one we worried most about) and her appetite was just great!! Yay!

>

> The heparin block was to painful for her since it stings so I

was

> able to take saline syringes home and flush her IV at bedtime and

in

> the morning which was very nice since she doesn't scream when I do

> it and it was much less tramatic than the heparin.

>

> I wound up getting the flu on tues. though! (treatment was mon,

> tues, wed) which was not very nice but I'm feeling much much

better

> today!!

>

> Since we were in the Hosp. I decided to get the Genetisist med.

> records instead of waiting for them in the mail and I was SHOCKED

> when I read through them. Our genetisist had been thinking RSS

> since her 10 month appt.!! We didn't get the diagnoses until she

> was 3yr, 3months old! Which means that she went through 2 full

> years of nightly hypo-g episodes for no reason! Eventhough he's

now

> waivering on the RSS diagnoses she's still SGA and they have quite

> similar presentations so even if he would have said SGA we still

> could have caught the hypo-g. Oddly enough no one ever asked us

if

> she sweats at night and we thought she was too hot so she was

sweaty

> then she'd wake up shivering because she was soaked, we didn't

know

> it was hypo-g.

> I don't want to beat this to death as we know it wasn't our

fault

> but I'm still trying to get over the shock of it!

>

> I'm not very convinced that Olivia is RSS anymore, I think it's

> SGA since she just doesn't have the " look " and she's a pretty good

> eater when she want's to be but we're still looking forward to

going

> to the convention and meeting everyone!!

>

> Sorry this got so long!!

>

> Leah mom to 9yrs and Olivia 4.5 yrs, RSS/SGA??, OI,

19.5lbs,

> 33 " , lactulose, senokot, zantac, tums