Hearing Assessment

>> Tuesday, September 29, 2009

Sometimes, when I get really pissed, I get really calm and my arguments are vicious. Glenn told me once he hates to fight with me. I said: Then don't. So that Friday, when I was so pissed, I called all over and talk to so many people it began becoming a blur EXCEPT...

...Tay was being Tay and was whining about going to school. So I said: Fine get in the car and we ended up being 20 minutes early. It was a sign, a big neon sign that said: GET OVER TO THE PEDIATRICIAN AND GET A REFERRAL! The kids Ped, Dr. Knorr, is next door to Tay's school. Well, Duh! So I went in and asked for the referral I needed to the Hearing Assessment Clinic at Primary Children's. They kind of hemmed a hawed a little about has Dr. Knorr treated him for this? I sighed and said this exact thing, remember, I am pissed and have slept for only a few hours: Dr. Knorr and I have DISCUSSED this but he is being TREATED at Primary Children's, I have called them but sometimes they are too slow. You see, he has SOO many seizures, 13 last night, that anytime ANY Doctor has to treat him they referr him away to Dr. Van Orman. I can not get a hold of Doctor Van Orman at the moment and so I am here, BEGGING Dr. Knorr for a referral to just have his hearing evaluated. I have been asking for this for 3 years, and over 1500 seizures later, I am still asking. I watch him seize and then he doesn't say Mamma for a few days. Please, just ask.

And they did. They called a nurse in and I said one thing to her: 13 seizures, each one takes more of his speech away and I just want to know if he can understand or hear at all. She said: No problem, I will talk to him and call you back. I blinked. Dumbfounded. Why the hell isn't SHE on the front desk?

Later that day, she called. I gave them a few days, since I KNOW how Primary Children's works, and then I called and got him an appointment. The lady was so nice. She agreed that the seizures and the speech should be treated as seperate things until someone, or some test, can link the two. I told her I was gonna kiss her when I saw her. She giggled. It was cute and I just might.

He goes in on October 8th and 10am. Prayers are needed. This is a big one.

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Dr. Rope and the powers that be

I got lucky on Friday. REALLY REALLY lucky when I got a referral to Dr. Rope at Primary Children's. He, and his staff, where fabulous! Simply fabulous. We took Tay with us too. When we got there Bug colored on the table. Literally, on the paper and then on the table. Oh yippee.

They called us in and we gleefully went into the exam room. Bug was not too keen on sitting anywhere. He wanted to roll around on the floor so we let him. Like Madonna.

Several people came in before Dr. Rope and did 'things'...checked his height, his weight, his BP, which was wonderful. And then we talked to Julie. She took his history and our history and pictures of the whole family.Tay liked this, Bug did not. THen she left, we waited and Bug pooped. I mention this, not just for my own perverse pleasure of people knowing that he poops A LOT and I change more diapers than a nursing home CNA, but it has a purpose.

Dr. Rope came in, Bug immediately ran up to him and Dr. Rope picked him up. Bug leaned in to him and Dr. Rope smiled: Friendly guy isn't he? Bug got down and Dr. Rope sat on the table crossed legged. I beamed...I had been doing that the entire time Julie was quizzing us. So, of course, I liked him. He began with the questions about Bug's birth and we naturally progressed to his current status. He had decided, prior to entering the room, that he wouldn't do any chromosome testing and, I think I can safely say, that Glenn and I were NOT gonna allow that so we worked him over. A little. VERY little.

We described all that was going on with the little man. His larger than normal fontanel, the seizures from when the fontanel closed at almost 3 years, the interest in dirt and feces, the no talking, the regression, the type of seizures, the size of his hands and the tall instep, he dismissed the simian line...which is unfortunate because he has it on both hands and it's impressive. When he started adding all the details to the list of signs and symptoms, he changed his mind about the chromosomal analysis. Yea our team.

We could tell that Dr. Rope was VERY interested in Bug. We discussed how he appears COMPLETELY normal until you try to talk to him and how he can catch a falling object. I have seen him knock a cup off the table and catch it mid-air. THIS made Dr. Rope raise an eyebrow. One does NOT expect that type of response in someone who has slow alpha waves. It's pretty unusual. And then there are the fingers. He has broad palms and short fingers. At first Dr. Rope thought it was just his pinkie fingers that where short and then Bug rolled over onto his stomach and placed his hand directly in front of Dr. Rope, who had moved onto the floor, and splayed his fingers out for several seconds. It was perfect. It was at that point that he decided to do the testing.

But first, we need a urine sample. Here we are a week later and we STILL need a urine sample...but I will get it today if I have to duct tape a baggie to his body! After the urine sample we will do the chromosome tests..this will take a very long time and Dr. Rope was hoping to narrow it down first but...that probably isn't gonna happen unless his research leads him to something curious. Of course, I am looking up all the things we discussed so that the next time we meet, we can say: check this first.

Here's where the poop happens: as we finished and Dr. Rope was leaving, Bug pooped. I stopped the Dr. and asked him to add this dirty business to the list. He said: It could be he is constipated and the 'stuff' is just leaking around the blockage. I laughed...and he smiled. I said: OK, how can we test this theory? He got out his notepad and said: Have an X Ray before you go! I said: And if that is normal can we add metabolic or calcium issues to the list? Because when I give him calcium he solidifies more and I only change 2 or 3 a day instead of 6 to 10. He said: If it comes back normal we will add it to the list. Hooray!

So we stopped on the way out and they X Rayed the little pooper. Holy crap that is cool, ask for it and get it. Glenn was peeking and said it looked normal to him so I have to email and find out the results and you know, break out the duct tape and get that urine.

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Defining surpise

>> Saturday, September 19, 2009

Got a call back yesterday from Penny. I am now OFFICIALLY in love with her and she will be on the Christmas list FOREVER. She said that the Doctor thinks his metabolism is fine after looking at this tests, BUT he also believes that he should not be waiting another 6 months to be seen by a geneticist. SO, she called one and they are getting him in..get this..on TUESDAY the 22nd of September. I am excited beyond belief.

He had 3 seizures this morning after 6:00am...so either we got more of the XR in him at night or..well..no idea what just had the 3.

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Defining Frustration

>> Friday, September 18, 2009

Dear heaven above there HAS to be a better way. And NO amount of Health Care Reform will help it.

Bug IS on the waiting list for Genetic testing at Primary Children's. Big freaking whoopee. He has been on it for almost 6 months, and still has several months BEFORE he will get an appointment. One year. An entire year is the waiting time. 12 months. 365 days. At 10 a night....3,650 seizures? Even at ONE a night...365? What does it take?

I called all sorts of Doctor's Offices at the U today. I called Genetics, The Metabolic Clinic, Dr. Van Orman, Endocrinology, and The Hearing Assessment Clinic. I left a message with ALL of them. Penny at the Metabolic Clinic was the ONLY one that actually SAID she would get back to me with our possibilities within 24 hours. I like Penny. I like her a lot. Even IF we are spinning our wheels before the Genetic testing, at least we will know and we can add them to the list when it's done.

ENT called back! Hearing Assessment folks. If I get a referral, Bug can get in the FIRST week of October! Holy Hoo Rah! Now, I just gotta find a referral.

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Didn't I JUST close my eyes?

Bug was tired at 7:30pm. Of course he was, he didn't get much sleep the night before, his sleepless nights do not bode well more often than not and in this case, it was a glimpse into last night. SO, Mom fed him, I gave him his meds at 8:30pm and at 9:00 we headed to bed. At 9:20 I turned off the TV and by 9:25 he was asleep.

9:30 he had a seizure. 9:45, 9:55, 10:00, 10:10 and 10:17. I called no joy and broke out the Diastat. He slept. I slept, until the alarm that some little hands set to go off at 12:00am went off. I turned it off, went to the bathroom and snuggled up to Bug who was sleeping soundly and peacefully and closed my eyes.

I was awakened by another seizure. Shit. Yeah, I am gonna curse and swear when I want because I deserve it. I prayed that it was at LEAST 6:00am. It was close: 5:54. But still: SHIT! I hoped it was a fluke and tried to get back to sleep. It wasn't a fluke. And enter me hating the universe, vowing to do something. ANYTHING, find ANYONE that can help him. He followed it up 6 more times in an hour and half. That's 13 total in a 12 hour period, WITH Diastat.

Currently, he won't eat and he wants to go back to sleep. THIS would be bad. VERY much bad. There has to be an answer, there HAS to be someone that knows what to do. I can't do this: Alter the medication by a few mg here and there, all the while watching his body tighten up every fifteen minutes when all he wants to do is sleep. This completely sucks. It sucks more than anything has ever sucked before in my entire life. I am angry, and I am crushed. I want to protect him and I can't. His brain will not let me. No one can tell me how or why to help him and I am beyond destroyed.

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Of all the luck...

>> Thursday, September 17, 2009

Bug didn't get his meds last night before he fell asleep. Glenn and I were at Tay's back to school night and Nana wasn't sure what to give him. He had 2 before 10 and I gave him his meds when we got home at 10:30. He stayed up, refusing to sleep until about 12:00, up again at 5:00 and seizure at 6:00. Crappy, craptastic. I have no idea where to go from here..I suppose it could be a break through event but who the hell knows?

He is very hyper and not paying attention to anything I say to him. He was starved this morning and when I called him in for breakfast...he didn't come. I told him food was ready and he acted like I was speaking a foreign language. Very frustrating.

Going to check out Kids On The Move today or tomorrow. At least he is happy and smiling and giving lot's of love.

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Awww..thanks.

>> Wednesday, September 16, 2009

Monday, Bug came home from school with a bag full of stuff. The ONE thing that stood out and made me teary-eyed was a handwritten apology from the little boy that bit him. Again, my heart sank thinking about that day but how can anyone hold it against a boy that has special needs. We try our best and hope all works out, most times, it does and sometimes, little boys get bitten. Either way, thanks Max for the apology and all my best!

Bug is 3 nights no seizures. Maybe, just maybe that XR is working. All fingers crossed. He sure is happy.

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XR

>> Tuesday, September 15, 2009

The last two nights we have been giving Bug his new meds: Keppra XR. It was fun to get. Expensive, quite but important. The ONLY problem is he chews them. This is bad. he is NOT supposed to break the capsule. Bummer. BUT we get one in him before he refuses anymore, bitten in half, but half is better than nothing and give him some of the liquid still. It has worked. He has not had ANY events. Not early into sleep and not early in the morning. This is good.

So far, we have renewed hope. Once he learns to swallow them whole he only needs to take two pills at night and the Lamictal during the day. This could be really good.

He is VERY happy the last few days, he smiles A LOT and jabbers like crazy. I won't say HOPT but I do want this to be HIM, I want to be seeing who he is, more and more because I love this little man and the person I have seen the last few days has been amazing. Please, let this be good for him, let this be our little boy coming back.

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One Week

>> Friday, September 4, 2009

A lot happens in a week. This week was no exception.

Saturday, we all went to Lagoon and had fun. Sunday, Bug and I got sick. The kids stayed home from school Monday and Tuesday and on Wednesday, Bug got his stitches out, I was tested, and came up positive for Strep Throat. On Thursday, Daddy went to San Francisco and Bug was diagnosed with Strep Throat. He was given Amoxicillin and we all muddled through the day.

That night, just before bed, Bug puked. The sheets needed to be washed already so it wasn't THAT big of a deal, except...

It takes forever to adjust to a puking child. I don't mean, Mom I don't feel well...vomit. I mean, laughing, playing, spinning something...vomit. Anywhere, anytime for no one knows what reason. It happens every few months, sometimes sooner, and when I mention it to Doctors, they say: Kids do that. Oh really? I have never known a child that pukes that much. EVER. He does do it more when he is phlegmy but how often should that be? If he has THAT much phlegm, maybe he has a bad allergy that the Doctor didn't test for. BTW, I hate back allergy testing, I just don't see the same histamine response as on the arm, yes, you can do more at one time, but I want a more detailed result. I digress...Back to regularly scheduled update.

If he isn't phlegmy all the time, and he isn't, why is he puking? He eats a lot. Yes, he eats a lot ALL the time though, but only pukes every so often. The poor kid has been to so many Doctors over the last 2 months but I'm afraid he needs to go see a few more. We need more answers and he can't tell us.

His meds are working for less and less time. Last night, he had 3 seizures right after bedtime and then two after 6:00am.

He had 200mg Lamictal and 10ml of Keppra before bed. Since the Keppra doesn't really build up in the system, one has to maintain a constant dosage through well spaced ingestion. Because it is passed through the kidneys, saving it for when he REALLY needs it isn't horrible. In fact, he is supposed to have 5ml in the morning and 5ml in the evening...he would seize all night. I need to talk to Shari again. Sigh.

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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