Good vibes and maybe a prayer
tonyb
Posts: 32,957
I'm usually one to tell stories, but when it comes to personal stuff I usually clam up. Except this time.
One of my grandsons, just 3 years old, just before christmas developed seizures. The kind where he loses total body control and collapses. No history of it in related families, no warnings. Some call them petite grand malls, but these last a second or 2 but he has anywhere from 5 -30 a day. Thing is, someone has to be with the kid around the clock, he could fall and hit his head, kill himself or at the least hurt himself real bad. Finally was able to get the kid into a specialist, put the kid on 2 different medications but they seem to get worse and more frequent. He fell the other day and hit his head resulting in a few stitches on the side of his head. Yesterday we took him to the hospital, checked him in for an overnighter. Cat scans, MRI, bloodwork all scheduled today to start the process of elimination. While in his room, he fell again. Resulted in 3 more stitches on another side of his little head.
Bloodwork, MRI, all came back clean tonight. Next step is dna testing and some other hormone testing all of which are pretty costly. While he has to take these 2 other medications, the doc had one left in his bag of tricks to prescribe. This is the most powerfull drug available to halt seizures, even then sometimes it works, sometimes not, sometimes just helps alittle. You have to inject the boy in the leg muscle twice a day for a month, then once a day for another month. Painfull shots for an adult let alone a 3 year old's legs.....14 shots a week in this poor kids legs.
This medicine we have to inject him with.....sit down, 23 grand a small vial. I'm sorry, what medicine can possibly cost twice as much as solid gold....just no reason why this stuff should cost what it does but thats a subject for another time. My daughters insurance company is balking at paying for it. Estimates for 2 months worth of this medicine is 3-4 vials at 23g's a crack. The doctor is writting them letters telling them they have no other choice as the boys physical health is in danger....which it is. I'm trying to make this as short as I can, but emotionally myself, my wife,daughter, and all other family members are pretty much spent. A few good vibes, maybe a prayer or 2 for this little boy would be appreciated. He's home tonight, but we must try and continue on with everyones routine while trying to find the root cause of these seizures and at the same time protect my grandson from hurting himself.
I know in the past I've stated that life has a way of throwing you curveballs that you can never fully prepare for, this is one of those times. Thanks in advance for listening, and any prayers that you can send this little boys way.
One of my grandsons, just 3 years old, just before christmas developed seizures. The kind where he loses total body control and collapses. No history of it in related families, no warnings. Some call them petite grand malls, but these last a second or 2 but he has anywhere from 5 -30 a day. Thing is, someone has to be with the kid around the clock, he could fall and hit his head, kill himself or at the least hurt himself real bad. Finally was able to get the kid into a specialist, put the kid on 2 different medications but they seem to get worse and more frequent. He fell the other day and hit his head resulting in a few stitches on the side of his head. Yesterday we took him to the hospital, checked him in for an overnighter. Cat scans, MRI, bloodwork all scheduled today to start the process of elimination. While in his room, he fell again. Resulted in 3 more stitches on another side of his little head.
Bloodwork, MRI, all came back clean tonight. Next step is dna testing and some other hormone testing all of which are pretty costly. While he has to take these 2 other medications, the doc had one left in his bag of tricks to prescribe. This is the most powerfull drug available to halt seizures, even then sometimes it works, sometimes not, sometimes just helps alittle. You have to inject the boy in the leg muscle twice a day for a month, then once a day for another month. Painfull shots for an adult let alone a 3 year old's legs.....14 shots a week in this poor kids legs.
This medicine we have to inject him with.....sit down, 23 grand a small vial. I'm sorry, what medicine can possibly cost twice as much as solid gold....just no reason why this stuff should cost what it does but thats a subject for another time. My daughters insurance company is balking at paying for it. Estimates for 2 months worth of this medicine is 3-4 vials at 23g's a crack. The doctor is writting them letters telling them they have no other choice as the boys physical health is in danger....which it is. I'm trying to make this as short as I can, but emotionally myself, my wife,daughter, and all other family members are pretty much spent. A few good vibes, maybe a prayer or 2 for this little boy would be appreciated. He's home tonight, but we must try and continue on with everyones routine while trying to find the root cause of these seizures and at the same time protect my grandson from hurting himself.
I know in the past I've stated that life has a way of throwing you curveballs that you can never fully prepare for, this is one of those times. Thanks in advance for listening, and any prayers that you can send this little boys way.
HT SYSTEM-
Sony 850c 4k
Pioneer elite vhx 21
Sony 4k BRP
SVS SB-2000
Polk Sig. 20's
Polk FX500 surrounds
Cables-
Acoustic zen Satori speaker cables
Acoustic zen Matrix 2 IC's
Wireworld eclipse 7 ic's
Audio metallurgy ga-o digital cable
Kitchen
Sonos zp90
Grant Fidelity tube dac
B&k 1420
lsi 9's
Sony 850c 4k
Pioneer elite vhx 21
Sony 4k BRP
SVS SB-2000
Polk Sig. 20's
Polk FX500 surrounds
Cables-
Acoustic zen Satori speaker cables
Acoustic zen Matrix 2 IC's
Wireworld eclipse 7 ic's
Audio metallurgy ga-o digital cable
Kitchen
Sonos zp90
Grant Fidelity tube dac
B&k 1420
lsi 9's
Post edited by tonyb on
Comments
-
heartbreaking Tony. The child and your whole family will be in my prayers.2-ch System: Parasound P/LD 2000 pre, Parasound HCA-1000 amp, Parasound T/DQ Tuner, Phase Technology PC-100 Tower speakers, Technics SL-1600 Turntable, Denon 2910 SACD/CD player, Peachtree DAC iT and X1asynchorus USB converter, HSU VTF-3 subwoofer.
-
Prayers for your grandsons recovery and the strength for everyone to get thru it.Political Correctness'.........defined
"A doctrine fostered by a delusional, illogical minority and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a t-u-r-d by the clean end."
President of Club Polk -
Nothing but the very best for you and your family Tony, even though you are a Bears fan.:cheesygrin:
I have no doubt sir that your grandson has a happy and long life ahead of him with any awesome guy like you on his side.The Gear... Carver "Statement" Mono-blocks, Mcintosh C2300 Arcam AVR20, Oppo UDP-203 4K Blu-ray player, Sony XBR70x850B 4k, Polk Audio Legend L800 with height modules, L400 Center Channel Polk audio AB800 "in-wall" surrounds. Marantz MM7025 stereo amp. Simaudio Moon 680d DSD
“When once a Republic is corrupted, there is no possibility of remedying any of the growing evils but by removing the corruption and restoring its lost principles; every other correction is either useless or a new evil.”— Thomas Jefferson -
Thanks fellers....I sincerly appreciate it.
When you think of Indiana Jones and his fear of snakes.....thats how I am with needles. Knowing I have to inject this kid while he's in my care scares the crap out of me. Ya know what though....I'll get over it, I have to. Hearing the kid cry at the top of his lungs in pain while giving him a shot is more than anyone with a heart can take at times. I know I'm not the only parent, grandparent, with a sick kid who has even worse health issues, but when it comes to kids.....man, I don't care who you are it pulls at your heart like you can't believe. In order to protect his head while eating, we try to make it seem as normal as possible. I went out out bought a series of padded superhero masks for him to wear while he eats. They are open more so around the mouth so he can eat with them on so if he has a seizure and his head hits the table he won't break his nose or slice open his head. You also have to be aware of the fork in the kids hands. It can never be facing up. Outside is yet another challenge and he does go to pre school too. Trying to find that balance where you can let him be an active 3 year old, not let him feel like an alien, and protect him. Thats the challenge. I'll tell ya right now, those goals are tuff to meet. Time is of the essence to find the root cause, unfortunately the medical system doesn't see it that way as getting appointments with the right doctors, neurologists, setting up tests, takes a boat load of time to get done. In the mean time, this boys at risk every day. Seeing someone you love, especially a kid, in pain and at risk, with a feeling of helplesness that overcomes you.... drives you crazy.HT SYSTEM-
Sony 850c 4k
Pioneer elite vhx 21
Sony 4k BRP
SVS SB-2000
Polk Sig. 20's
Polk FX500 surrounds
Cables-
Acoustic zen Satori speaker cables
Acoustic zen Matrix 2 IC's
Wireworld eclipse 7 ic's
Audio metallurgy ga-o digital cable
Kitchen
Sonos zp90
Grant Fidelity tube dac
B&k 1420
lsi 9's -
I'm very sorry to hear this Tony. In some ways I can relate, as I can go into petit grand mall seizures when my blood sugar gets really really low. Had a small episode last night in fact. I will be praying for your grandson and your whole family. I pray they find the cause with tests and can treat the cause fully. I also pray that your grandson and your whole family are given the streangth to get through this. I'm very sorry your grandson, you and your family have to deal with the consequences of this. Take care Tony.
Taken from a recent Audioholics reply regarding "Club Polk" and Polk speakers:
"I'm yet to hear a Polk speaker that merits more than a sentence and 60 seconds discussion."![:\](https://forum.polkaudio.com/resources/emoji/confused.png ":\")
My response is: If you need 60 seconds to respond in one sentence, you probably should't be evaluating Polk speakers.....
"Green leaves reveal the heart spoken Khatru"- Jon Anderson
"Have A Little Faith! And Everything You'll Face, Will Jump From Out Right On Into Place! Yeah! Take A Little Time! And Everything You'll Find, Will Move From Gloom Right On Into Shine!"- Arthur Lee -
Prayers sent to the little guy and your whole family Tony."if it's not fun, it's not worth it & remember folks, "It's All About The Music"!!
***************************** -
My thoughts and Prayers are with you and your family TonybATC SCM40's,VTL TL 2.5 Preamp,PSB Stratus Goldi's,McCormack DNA 500,McCormack MAP-1 Preamp,Pro-Ject Xtension 10 TT,Ortofon Cadenza Red/Nordost RedDawn LS Speaker cables, Bryston BDP-2, Bryston BDA-2,PS Audio AC-3 power cables
-
Thoughts and prayers out for the little guy and your family
Hope the doc's can find whats ringing the bell soon2-channel: Modwright KWI-200 Integrated, Dynaudio C1-II Signatures
Desktop rig: LSi7, Polk 110sub, Dayens Ampino amp, W4S DAC/pre, Sonos, JRiver
Gear on standby: Melody 101 tube pre, Unison Research Simply Italy Integrated
Gone to new homes: (Matt Polk's)Threshold Stasis SA12e monoblocks, Pass XA30.5 amp, Usher MD2 speakers, Dynaudio C4 platinum speakers, Modwright LS100 (voltz), Simaudio 780D DAC
erat interfectorem cesar et **** dictatorem dicere a -
Positive thoughts and prayers to you and your family, Tony.2 ChannelTurntable - VPI Classic 2/Ortofon 2M BlueAmplification - Rogue Audio Cronus Magnum II, Parks Audio Budgie PhonoSpeakers - GoldenEar Triton 17.2 Home TheaterDenon AVR-X3300W; Rotel RMB-1066; Klipsch RP-280F's, Klipsch RP-450C, Polk FXi3's, Polk RC60i; Dual SVS PB 2000's; BenQ HT2050; Elite Screens 120"Man CaveTurntable - Pro-Ject 2.9 Wood/Grado GoldAmplification - Dared SL2000a, McCormack DNA 0.5 DeluxeCD: Cambridge AudioSpeakers - Wharfedale Linton 85th Anniversary; LSiM 703; SDA 2A
-
Prayers and best wishes to you and your family, Tony.
-
Prayers for your little guy and you and your family, Tony. Be strong.Sal Palooza
-
Prayers sent to you and yours Tony!!
-
Prayers sent for your grandson, Tony. I have a three year old myself so this one hits close to home to me.
Tom~ In search of accurate reproduction of music. Real sound is my reference and while perfection may not be attainable? If I chase it, I might just catch excellence. ~ -
Prayers sent hope all goes wellHome Theater
Parasound Halo A 31 OnkyoTX-NR838 Sony XBR55X850B 55" 4K RtiA9 Fronts CsiA6 Center RtiA3 Rears FxiA6 Side Surrounds Dual Psw 111's Oppo 105D Signal Ultra Speaker Cables & IC's Signal Magic Power Cable Technics SL Q300 Panamax MR4300 Audioquest Chocolate HDMI Cables Audioquest Forest USB Cable
2 Channel
Adcom 555II Vincent SA-T1 Marantz SA 15S2 Denon DR-M11 Clearaudio Bluemotion SDA 2.3tl's (Z) edition MIT Terminator II Speaker Cables & IC's Adcom 545II Adcom Gtp-450 Marantz CD5004 Technics M245X SDA 2B's, SDA CRS+
Stuff for the Head
JD LABS C5 Headphone Amplifier, Sennheiser HD 598, Polk Audio Buckle, Polk Audio Hinge, Velodyne vPulse, Bose IE2, Sennheiser CX 200 Street II, Sennheiser MX 365
Shower & Off the beaten path Rigs
Polk Audio Boom Swimmer, Polk Audio Urchin
-
Nothing worse than when a child has to suffer...
I wish you and your family the best of luck getting your grandson well again. -
Oh Tony I'm so sorry, I'm sending all the good vibes & thoughts I can muster in your grandson's and your families direction. I hope the find they answers and treatment necessary for the little boy to get back to a normal, healthy life!Marantz AV-7705 PrePro, Classé 5 channel 200wpc Amp, Oppo 103 BluRay, Rotel RCD-1072 CDP, Sony XBR-49X800E TV, Polk S60 Main Speakers, Polk ES30 Center Channel, Polk S15 Surround Speakers SVS SB12-NSD x2
-
Prayers coming, and if you don't get him a small helmet, I will. Been here before.
-
Prayers and best thoughts for you all and especially the little guy, that has to be awful, with him not knowing why its all going on.
May god guide the doctors and work all this out soon.humpty dumpty was pushed -
This was heartbreaking to read. I wish all the best to your family Tony.
But that drug cost.... Wow. Damn rights that's a industry to abuse sick people... -
George Grand wrote: »Prayers coming, and if you don't get him a small helmet, I will. Been here before.
He has one George, but the kid is a kid and wants to take it off all the time. He is aware something is wrong with him and doesn't want to feel different from the rest of the kids. This has become a sticking point with me and my daughter. He has to keep it on all the time, she thinks otherwise and is sympathetic to the boys wants. I tell her she won't have a boy if she neglects the importance of this safety feature.
Tell ya what, it wasn't the first time some four lettered words flew out of my mouth....go figure. An Italian with a foul mouth, who would have thought. Nothing is more important than the safety of our, as in yours ,mine, or anyone elses children....NOTHING !!HT SYSTEM-
Sony 850c 4k
Pioneer elite vhx 21
Sony 4k BRP
SVS SB-2000
Polk Sig. 20's
Polk FX500 surrounds
Cables-
Acoustic zen Satori speaker cables
Acoustic zen Matrix 2 IC's
Wireworld eclipse 7 ic's
Audio metallurgy ga-o digital cable
Kitchen
Sonos zp90
Grant Fidelity tube dac
B&k 1420
lsi 9's -
The little guy and your family are in my prayers Tony.
Can't think of anything much worse than a sick child.
Stay strong.Main Rig-Realistic AM/FM Record player 8 track boasting 4 WPC
Backup Rig-2 CH-Rogue Audio Zeus w/Factory Special Dark Mods,Joule-Electra 300ME Platinum Preamp,OPPO-105 w/Modwright Tube Mod, Auralic Aries G2.1,Polk 2.3TL,3.1TL's,Dreadnought,RTA-15TL's,1C's All Fully Modded,2xRTA-12c's ,Benchmark DAC3 HGC,Synology NAS,VPI Scout w/Dynavector DV-20XH and Rogue Audio Ares Phono Preamp,Sony PCM-R500 DAT,HHB-850 Pro CDR,Tascam CC-222SLMKII Cassette/CDR,MIT S3.3 Shotgun Cables,Shunyata Hyra-8,Shunyata and Triode Labs Power Cords
I’M OFFENDED!!!! -
Thoughts and prayers coming your way Tony.
Dan -
Wishing you, your family, and especially your grandson my best wishes. Be there for each other, come here when you need an escape.
Bill -
Paryers and healing thoughts sent.JC approves....he told me so. (F-1 nut)
-
Keeping good thoughts for you and your grandson, Tony. So sorry to hear of the little guy's troubles. He's lucky to have you for a grandpa! Hang in there - I'm sure they'll get it figured out soon."Science is suppose to explain observations not dismiss them as impossible" - Norm on AA; 2.3TL's w/sonicaps/mills/jantzen inductors, Gimpod's boards, Lg Solen SDA inductors, RD-0198's, MW's dynamatted, Armaflex speaker gaskets, H-nuts, brass spikes, Cardas CCGR BP's, upgraded IC Cable, Black Hole Damping Sheet strips, interior of cabinets sealed with Loctite Power Grab, AI-1 interface with 1000VA A-L transformer
-
Prayers sent. It's always toughest with the little ones...
-
Thoughts and prayers coming Tony. This may be a good case for some of the Crowd Funding sites. I've heard of some serious help from them. Write up his story and post it up, you never know.>
>
>This message has been scanned by the NSA and found to be free of harmful intent.< -
Thoughts and prayers for the little guy Tony.Salk SoundScape 8's * Audio Research Reference 3 * Bottlehead Eros Phono * Park's Audio Budgie SUT * Krell KSA-250 * Harmonic Technology Pro 9+ * Signature Series Sonore Music Server w/Deux PS * Roon * Gustard R26 DAC / Singxer SU-6 DDC * Heavy Plinth Lenco L75 Idler Drive * AA MG-1 Linear Air Bearing Arm * AT33PTG/II & Denon 103R * Richard Gray 600S * NHT B-12d subs * GIK Acoustic Treatments * Sennheiser HD650 *
-
Just got back spending a day and a half with my nieces and nephews (ages 2-15). This was heartbreaking to read but I try to always hope for the best. Prayers being sent from across Lake Michigan to the little guy, you and your family._____________________________________________________________________________________________
Ethernet Filter: GigaFOILv4 with Keces P3 LPS
Source: Roon via ethernet to DAC interface
DAC: Bricasti M1SE
Pre/Pro: Marantz AV8805
Tube Preamp Buffer: Tortuga TPB.V1
Amp1: Nord One NC1200DM Signature, Amp2: W4S MC-5, AMP3: W4S MMC-7
Front: Salk SoundScape 8's, Center: Salk SoundScape C7
Surround: Polk FXIA6, Surround Back: Polk RTIA9, Atmos: Polk 70-RT
Subs: 2 - Rythmik F25's
IC & Speaker Cables: Acoustic Zen, Wireworld, Signal Cable
Power Cables: Acoustic Zen, Wireworld, PS Audio
Room Treatments: GIK Acoustics -
So sorry to hear, he will be in my thoughts.
