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« Reply #30 on: November 03, 2006, 01:37:10 PM »

Fay-

Is Scott asperating on fluids still?? They taught us that if you tuck your chin to your chest and drink sitting up with a short straw in a cup that the fluid will go down without asperation with the help of the tongue covering the tube to the lungs. Might try it if he can put his head down.

Gina
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« Reply #31 on: November 03, 2006, 02:12:25 PM »

Thanks for the tip! I'll def get him to try it. Any suggestions with food?
I honestly think he's asperating on both food and drinks plus his reflux is worse too. It's driving me nuts trying to figure it out and then not getting past the nurse is even more fustrating. I'm def bringing it up to our Pediatrician in the morning though. Enough's enough and I've def had enough!
Yes, Scott has been holding his head down- like he's looking down all the time and simply slightly moves his head to the left or right while moving his whole body to turn to look at something. He simply can't hold his head up more than 3 or 4 minutes-if that long. I wonder if he needs OT or PT or just time for those muscles to heal. Will talk to the pediatrician about that too.
 
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« Reply #32 on: November 05, 2006, 01:49:48 PM »

Fay-

See if you can get him in to see a swallow therapist. They can test him to see what is happening. Don't let him eat anthing liquidy like watermelon.  Try thick things like oatmeal or bread and then go to something less thick and see what happens. Then you will know how think things need to be.

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« Reply #33 on: November 05, 2006, 02:42:23 PM »

He's on the ketogenic diet so can't have anything like oatmeal or bread. It will be really hard to do a swallow study with the keto foods simply because the meals are so small (most of his meals will fit into a 1 cup measuring cup!) plus not enough textures, liguids, thicknesses, etc in a meal either. He can't stop the diet even long enough to do the test because he'll come out of ketosis and would have seizures. One gram, which is about 2 drops of milk or one  tiny Cheerio cereal round, can cause a seizure or can even cause non stop seizures- no joke. We start weaning him off the diet in December but it takes at least 6 to 8 months to a year to come totally off the diet. If you go any faster you run the risk of the seizures coming back.
 
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« Reply #34 on: November 11, 2006, 04:21:39 PM »

When Sedona did the swallow test they used barium. This is not a food item. They started with thick on a piece of food. They asked us what she could have. Then she drank the barium thick, then slighly thined and so on. By the time they got to the step before thin she was on to them and refused to swallow. Our test was inconclusive because of this. But we all knew that she was asperating. The purple face and lips after watermelon was their first clue.

Gina
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« Reply #35 on: November 12, 2006, 12:24:20 PM »

Scott still might not be able to have barium due to the carbohydrate (the binder) in it. Any carbohydrate turns into sugar (the body can't tell the difference between one carbohydrate and another) which in turns affects the diet even if it doesn't show on the keto stick. The keto kids body runs on fat (called ketosis) while a normal body not on the ketogenic diet runs on carbohydrates (which gets turned into sugar by the body). It is really way too complicated to explain here. Not enough room either!
Scott's not turning blue like he did before he had the VNS removed and his blood presure is staying perfect so that part has been a huge blessing. He doesn't seem to be choking quite as bad as he was but he's still coughing a lot and clearing his throat a lot. Plus his voice sounds hoarse like he has a cold (but he doesn't). His headaches are worse too. He wakes up hungry and eats breakfast fine but although he says he's hungry for his other meals (and snack) he feels full after the first few bites and will sometimes dump the rest of the meal in the garbage before I can stop him.
I am having to watch the clock to make sure he eats on time plus watch him to make sure he finishes everything too. If he loses any weight I'm betting he'll have to have another g-tube placed. It really wouldn't bother me at all if he needs one placed again.
How is Sedona doing now? have you had the tests ran yet and any results yet?
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« Reply #36 on: November 12, 2006, 01:05:43 PM »

Checking in on Scott - glad to see an update on Sedona as well!  Good luck with the upcoming IEP and biopsy.  


Sending out lots of postive and healing thoughts.


 
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« Reply #37 on: November 17, 2006, 05:21:12 PM »

You know Scott's swallowing/coughing problems are most likely from the intabation tubing.  Some of those anestheiologists can be brutal when they jam that thing down your throat.  The trauma from that really seems to take a long time for the body to recover.  The more surgeries you have the worse it gets too.
(speaking from my own experiace here)

Is he getting any better? Maybe is he can have more frozen juice bars or ice to suck on to reduce the swelling.....
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« Reply #38 on: November 18, 2006, 04:57:20 AM »

Yes, he IS better with the swallowing (not choking) but he's still coughing and clearing his throat an awful lot. But I am extremely concerned about his headaches and eye problems. I am beginning to believe that the Intracranial Hypertension and Papilledemaare coming out of remission. His headaches are getting worse so he's coming in from school and simply lying on his bed to watch TV or play his game boy-with the lights out of course and doesn't want to move. Even told his best friend he didn't want to go bowling because the noise and the lights "hurt too bad". He told us last night about 10 pm that he seews thingsgo away again" and that everything looks "smeared" sometimes. NOT good at all. he had a Neuro-optic appt a couple of weeks ago and although his optic nerves looked "good for Papilledema" and his "didn't appear to have changed", she was concerned because his visual fields tests (they did 3 that day) were worse than she'd seen them in a long time. He simply is not himself at all.
Still no seizures (thank God!) plus his blood pressure is still staying normal and has not needed any oxygen at all either. He is hungry and thirsty in the mornings and at lunch but after that he doesn't want to eat or drink at all. It makes him feel sick to his stomach. His voice sounds like he has a really bad cold but he doesn't.
We have our 6 month keto/neuro appt on Dec 6 but Idon't think this needs to wait until then so am calling him Monday. We were planning on starting to wean him off the diet and don't know if this will change anything or not. Hopefully it won't. We are ready to come off the diet even though it will take almost a year to do. But overall he is better than he was a few years ago so I keep reminding myself that things could be much worse. Just praying he doesn't get to that point ever again.
He does enjoy homemade sugar free koolaid popsicles and flavored crushed ice.
That makes sense about the intubation too. Scott used to have to be intubated because of severe asthma attacks plus he went into nonstop seizures a lot too. that don't include all the surgeries he's had. i was (still am a little bit) always worried about the possibility of him needing oxygen 24/7 because each time he's admitted and intubated it takes longer to wean him off the oxygen. I can handle the oxygen as needed as we've been doing that for years with home oxygen but it's scary to me if he'd need it 24/7 if that makes sense.
I'll keep you all posted as best I can. Fay
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« Reply #39 on: November 18, 2006, 05:24:24 AM »

I can't imagine the experience that your whole family has been through. As a mother, I can't imagine the pain you have experienced. It hurts when your child hurts.

Let us know about what you find out Monday.

Give Scott a hug for me.

 :im_033:   Labrat    :im_033:  
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« Reply #40 on: November 18, 2006, 07:45:16 AM »

Thanks Labrat. It is 2:22 pm here now and Scott has only left his bed to eat and use the bathroom. Has hardly said a word to anyone. This is not my happy, laughing boy at all. Monday can't come soon enough. Ill keep you posted.
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« Reply #41 on: November 18, 2006, 01:47:05 PM »

Fay-

As always my thoughts and prayers are with you.  I hope that nothing is wrong on Monday and you worried for nothing.  I totally understand how you feel about Scotts moods changing.  When I have a headache or migrane I can't eat either.  I feel queasy and just swallowing hurts my head.

Give Scott a hug from us and that way you will get one from us too.

Love and Friendship,

Gina :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  
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« Reply #42 on: November 18, 2006, 02:17:56 PM »

Thanks Gina. You and Sedona are always in my thoughts and prayers too. Sedona has it much worse than Scott does so I worry about you too. I know those feeling of helplessness all too well. I pray that both our kids get better soon. Lots of hugs back to you guys.... :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  
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« Reply #43 on: March 03, 2007, 09:32:38 PM »

Hey Fay, how about a current update on Scott.  It's been a while.  I know he has finally gotten a little bit of height.
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« Reply #44 on: March 04, 2007, 12:14:50 PM »

Sure Target. As some of you may know Scott will be 18 years old in May and up until very recently he hadn't started puberty and had the hormone levels and bone age of a 10 to 12 year old boy. Before he had the VNS implanted he was always right where he needed to be weightwise for his height and was always considered very normal at every doc appt from birth (which he weighed 7 pounds 8 ounces and was 19 inches long). He quit growing in height 2 months after the VNS was implanted and he started losing weight about 8 to 10 months after the VNS was implanted. After he lost 21 pounds we had to have a g-tube placed.
 A lot has happened since he had the VNS removed back in Oct.
He HAS grown AND has started puberty too! He went from 4 feet 9 inches tall the day he had the VNS removed to 5 feet 1/2 inches tall 2 weeks ago at our last Neuro appt. He has also gained weight- going from 92.5 pounds the day the VNS was removed to 100.5 pounds 2 weeks ago at the same Neuro appt. Mind you that Scott only grew less than 1/4 inch the entire 7 YEARS he had the VNS implanted and he only gained 5 ounces of weight the entire 7 years too. The weight he gained all these years were the weight he lost and the reason why he had to have a g-tube placed. He is also in puberty now and is sporting a very visible mustache and is starting to grow the peach fuss of a beard. If we shave it off he will still look like a 12 to 14 year old kid so we are letting it grow out a little before his first shave. His voice has also changed but I honestly don't know how much is puberty and how much is vagus nerve damage. His voice was totally different after he had the VNS removed so it's impossible to tell how much is puberty and how much from the vagus nerve damage. People seem surpised when they meet him and then hear his voice. Looks like a kid but sounds like a young man!
His blood pressure remains perfectly normal (slowly became normal over the days after he had the surgery to have the VNS removed) and he has not had a Cerebral Hypoxia attack since before the VNS was removed. No more pulse ox monitoring and no more oxygen tanks in our house!!!!
On a bad note he has continued to have major asthma problem since having the VNS removed and his reflux and GI problems are much worse since the surgery. We are prob going to have to have another g-tube replaced and have a fundo done in the near future. We've tried all the meds, elevating his head, etc but he continues to have major problems. We see our GI doctor the end of March so hopefully we'll find out then if there is nything else to do.
Scott also started having seizures again on Feb.3rd. I accidentally gave him 9 meals with sweetened pinapple and he had 14 drop seizures and 12 myonclonic seizures requiring Diastat. Since then we have adjusted the diet twice and swtiched from AcipHex (which i think is what caused the most recent bout of seizures) to Nexium. We just switched the reflux meds 2 weeks ago so too early to tell yet if this is what the problem was this time. He hasn't a seizure in two days but he's gone this long without any too this past month so am not banking the seizures are gone again just yet. We see our Ketogenic diet Neuro Weds and am wanting to have an EEG done to see what's going on while he's sleeping. He isn't seizing during the day but is having mild tonic clonic seizures and myoclonic jerks while he's asleep which concerns me. I have noticed the seizures aren't lasting but a few seconds each and they aren't hard seizures at all plus he is back to himself again so know he's better than he was even a week ago.
So as you can see a lot really has happened and praying we can get him totally seizure free again soon. He went exactly 2 years and 13 days without any seizures at all and his keto team seems to think we will get him there again so that we are trying to think positve and pray we still have the ketogenic miracle and that we just had a couple of mistakes to throw us off.
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« Reply #45 on: March 04, 2007, 01:19:36 PM »

WOW!  What an update!

I would like to thank you for sharing your child's experiance wit VNS.  It has been a very difficult time for all of you.  It is our hope that his current issues will resolve themselves.

He's been such a trooper thru all of this!


 
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« Reply #46 on: July 08, 2007, 02:00:23 PM »

Fay-

We finally saw a great Neuro that knows all about Sedona's other disorders and is not willing to cause more damage to her. He is not willing to medicate without talking to her Pulmonoligist or Genetic dr. This is a new one for us.

Sedona's lung issues are the same. Nothing new to tell there but she is having more seizures and her neuro put her on High dose Valium to control them. Except it is making her O2 levels drop and she is shaky in the AM.

She also started to have seizures that cause her to freeze or loose her balance.  We have never had these before. Kinda makes me nervous.

We are all moved to AZ and it is hotter here but the schools and medical are 100% better than Vegas.

Gina :usflag:  
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« Reply #47 on: July 08, 2007, 04:17:08 PM »

Thanks for the update.  I've wondered how she's been doing. Should have called you (same number?) but things haven't been so good here at all with Scott or my Mom so rarely get to talk on the phone at all and don't get to get on the computer much either. Have you read the updates on Scott yet? He still has major GI problems and will find out Thursday what our next step will be. Now that he's 18 years old we've been through the ringer and back about Social Security, Durable Power of Attorney and Gaurdianship but thankfully we've gotten a lawyer willing to help us with Gaurdianship now. My Mom, who has moderate Alzheimers, lives with us and she's gotten worse so have my hands full with her too. Then last week- July 3rd-Sarah, our 15 year old daughter, was in a bad car wreck. They were on the way to a 4th of July cookout at our church and then to watch fireworks afterwards at the church before coming home. A lady pulled out in front of them and the driver (youth pastors son) had no time to stop or slow down at all. Sarah saw the car pull out so tried to brace herself with her arms on the drivers headrest -which didn't help her at all. All 4 teens were rushed by ambulance to the hospital. The car is totalled. Sarah cracked her collarbone, has several pulled muscles in her neck, arms, shoulders and upper back plus has seatbelt burns across her neck and left shoulder. Thankfully she'll be ok and so will the other 3 teens that were in the car with her. It will just take time for them to heal.
Were you ever able to get Sedona home oxygen? I hope so.
Can you please email me your phone number if it's changed and your address. We should be getting Scott's graduation pics back soon and I'll send you one. hugs, Fay
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