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Posts Tagged ‘ACH’

Here is a single 36 hr period of wakefulness and sleep that Luke experiences that I recorded to show Lukes sleep doctors, sleep neurologist and clinical psych on 4/15.

Wake 8am

Nap 12:45-2:45pm > 2 HOUR NAP

Bed 8pm

Wake 10:30pm

Wake 10:42pm

Wake 11:25pm

Wake 12:05am

Wake 12:11am

Wake 12:20am

Wake 1:01am > Awake for 5 HOURS

Back asleep 6:16am

Wake 7:13am

Wake 8:10am

Nap 1:02pm

Wake 2:10pm > Put back to sleep

Wake 3:15pm > 2 HOUR NAP

Bed 8pm

Kind of ridiculous right? That night time sleep would be Luke in his toddler bed that is next to my side of the bed so I can jump up and get him to lie back down quickly. Most of those wakings the first half of the night are parasomnias – “sleep walking”. The 1am waking was full on wakefulness. Thats a pretty typical night though. I just don’t sleep since he doesn’t sleep.

(This is our little man.. not being so manly with mamas purse in the ACH waiting room)

The psychologist had said in our first meeting that she thought his sleep problems were behavioral. *insert sarcastic laugh* Yeah. Right. We may have done a lot of things wrong, like nurse to sleep, nurse at each waking as a desperate attempt to get him back to sleep, co-sleep, couch sleep, no routine.. *sigh* When we did implement those thigns and make ALL the corrections that she wanted to.. it STILL didnt matter. CLEARLY there is a medical problem. After a month we saw her again and she agreed that it was infact, -not- behavioral problems interrupting his sleep.

The .75mg of Klonopin wasnt even touching his parasomnia. We did see an uptick in the wakings when we started the med but it leveled back out and we now see that there is zero change in his sleep. Although, it is reducing his anxiety in excellent ways! He can make eye contact with people he doesnt know and even give them high fives sometimes! I almost think we need to stay on some kind of anxiety med so that he can develop faster. At therapy he is making HUGE strides since we started Klonopin.

The regular sleep doctor, Dr. Guillory, just said to finally get off melatonin since we dont even see any benefit from even a large dose, extended release, and the expensive name brand stuff. We have like, 5 kinds of melatonin stuffed in Lukes medicine cabinet. And isnt that sad that Luke has his own med cabinet? And, its stocked FULL of his meds.

(This is Nick and Luke listening to the Toy Story reader on the shiny new iPad)

The sleep neuro said we need to up the dosage of klonpin to 1.5mg over the next 10 days. Dr. Greible said if we don’t see a change then we need to take the next 6 months to wean off that med. We will have to find something else to try obviously. She didnt suggest what we might try. Ive got that feeling that Klonopin isnt going to be the magic drug though. Sadly, Dr. Sharp, the neuro, believed that his heavy sleep that morning after his most recent seizure what induced by the increase of klonopin. Im thinking it wasnt. Lets just call it mommys intuition.

One other point to bring up from that sleep clinic appt was that the Clinical Psych does want us to have Luke evaluated for an Autism Spectrum Disorder (ASD) and Sensory Processing Disorder (SPD). This was not at all surprising to us. Nick had felt like something along these lines were going on since around 6 months old.

I read several books this past summer while I was sleeping on his bedroom floor. Many were sleep training books but I did read a few books on quirky kids and ASD/SPD type stuff. I decided to stop reading them because I really felt like it described Luke but that I was probably reading too much into it. We always had something like this in the back of our minds. Then, we brought up some odd behaviors Luke exhibits and she started asking very pointed questions which we knew what she was getting at.

She said if Luke does have ASD he is VERY high functioning of course. SPD/ASD do go hand in hand sometimes but if hes not ASD then hes probably SPD.

I’m totally ok with this. It would make me feel better to know that THIS is how Luke is hardwired and my parenting style didnt somehow ‘do’ this to him. I just feel guilt sometimes. Like, did something in my pregnancy cause his seizures in utero? Of course thats not the case. Did our (over)reaction to how he was diagnosed with epilepsy cause some of his anxiety and neediness? Probably not.

So, this is where we are now. It will be months probably before we can get into the Dennis Developmental Clinic. They want us to see someone there because they are the best in Arkansas. We dont want him diagnosed with something he doesnt have. And if there needs to be a diagnosis made, we want it to be most accurate and made by the best people. It could be the end of the summer.

I plan on mailing the application Monday first thing. I dont want to sit on this one.

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Did ya get that? If you didn’t its just the correct term for upper GI scope. 

The reason we are having the scope done is because Luke has severe reflux while on 30 mg of Prevacid a day and gags and vomits while he eats periodically. It could be reflux or damage from reflux causing the gagging and vomiting or eczema in the esophagus causing the gagging, or structurally something is wrong. Dr. Fiedorick, who is an amazing man, gave us two options: 1: Perform the GI Scope and KNOW what the problems is and go about correcting it or 2: Play with the meds which means things might get worse before they get better

I chose option 1. I was worried how Nick would feel but I just decided instead of playing with meds trying to figure out the right combo we should go look and see if there is damage from reflux or what could be wrong so that we would know FOR SURE how to fix it. In the end, Nick was ok with it.

On the up side, it took 3 months to see Dr. F but only 4 days to schedule the scope at ACH!

Yesterday was pretty strange. Luke couldn’t have anything to eat or drink after midnight and he typically nurses once or twice at night for comfort to get back to sleep. I totally forgot that breastmilk is a thin liquid and ok before surgery since it would be 6 more hours from when he would’ve nursed to the time or the procedure. Anyways, we all got up with Luke at 2am and Nick took over caring for him then since Luke as crawling all over me to nurse. 

We got to ACH at 5:30 but we weren’t supposed to check in til 6:30 so Luke and Nick slept a little bit. Poor Nick was just sick with nerves although I was pretty laid back about it. Luke slept through me getting him out of the car, walking across campus into ACH, through ACH hallways and the entire time (45 mins to 1 hr) we sat in the waiting room. 

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(notice Mickey in his lap)

When they finally called us back to prep him he woke up. What a sad awakening! They measured him and he was 32 inches. (Remember last week at neurology they measured him at 29 inches and I said it was wrong… SEE.. 32 inches is much more accurate sounding,… I digress..) got his head measurements ( I dont remember) and his weight.. 22 lbs naked. 

They took us back to a little room and we dressed him in tiny little yellow hospital pants and shirt. We had to cover up his feet with a blanket because they had already put the pulse ox on him and he was flipping out at the thing on his toe. We played Mickey on Nicks iPhone for Luke to distract him which worked pretty well until someone else came in the room.

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Lots of people stopped in to tell us about the procedure, the meds, etc. One of the cool things was the air gun to shoot the ‘i dont care meds” into Luke. (A CO2 air gun was used instead of a needle) 

After a while the “i dont care meds” helped calm him down a little and the nurse came to take him away. She had my lay him on the baby bed to roll him away but my lil trooper surely fights to the end so she had to carry him while pushing the bed. LOL.. my poo baby. We followed the blue feet back to the waiting room and we stopped at the doors. We listened to Luke screaming all the way in the back. My kid has PIPES yall! Dont believe that line about babies needing to cry it out to strengthen their lungs. Luke has never cried anything out and that kids got a set on him!

So, we waited around 30 mintues to hear anything. The procedure took about 25 minutes. He was to have laughing gas, to be intubated, and then the scope, spend some time in recovery, and then wake up with us there. Thats pretty much what happened although from the time we talked to Dr F after the procedure to the time we could see him was like 45 minutes. I think. It was really way too long. We had time to update Facebook statuses, make a couple phone calls, and talk to each other for a while. We reeeally wanted to see Luke. 

When they took us back he was all laid out on his little bed. He looked good! I remember stories of my parents being scared to death after my surgery but this was much less and Luke had a good pink color. I wanted to take a photo of how he was sleeping but thought I should ‘be in the moment’ instead. So, moment gone.. but I have the memory! 

She said everyone said to let him sleep until we could come back because he would freak out if we werent there. Funny how quickly people pick up on this about Luke. Im glad though.. we were worried he was back there screaming without us. I rubbed on his little head and he sat up and reached for Nick. He had wires every where so the nurse helped us get him up. I took him and sat in a rocker and gave him a sippy of juice. He chewed on it and eventually drank enough (darn this teething!) that we could dress him and leave. 

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The rest of the day we were zapped. We ate lunch and Luke had lots of juice to drink and cheerios. We napped for a few hours and Luke seemed totally back to normal. As Nick put it to the nurse who called to check on him this morning, “Six hours after the procedure he was getting into trouble! He’s great!” 

Pretty much Luke is doing well. The Dr. said he found no structural abnormalities or any obvious damage. He did take several biopsies and will call us next week with the results. He’s looking for infections in the biopsies. Also, he’ll let us know about the liver functions, blood work, and the celiac markers then as well.

The only thing he found was at the top of the esophagus. “Esophageal candidiasis“. Basically, thrush or a yeast infection. 

Patients with esophageal candidiasis present with odynophagia, or painful swallowing. 

Dr. F asked us if he had ever had thrush. We battled thrush for months when he was first born. It was constant so it appears this could possibly be the cause of the gagging and vomiting. He showed us on the photo where the plaques were.

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However, he didnt think that this could really be the cause because it was so minimal unless the yeast had recently grown smaller. To treat it we’re starting a 10 day round of Diflucan and we’re to watch for any improvements. Although, it’s looking more like this is going to be a texture issue if anything. 

We’ll talk to the Dr about his reflux control when he calls with the results next week. Luke is still having wet burps, hiccuping, and ‘spitting up’ espisodes so he might want to adjust the meds still. 

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Neurology today

I’m sorry if (generally) you expected a phone call from me today after the appointment. (G) You have to understand, sometimes it’s just too much to process all at once…all the information and emotional ups and downs.. the stress. Repeating the information to Nick afterwards is about all I can handle for a while. Diving back into it all to explain and answer questions feels like such a burden. For all intents and purposes I feel like I’ve just witnessed another seizure almost after that neuro visit. It’s much easier (for me) to not think about seizures, EEGs, meds, and all the possibilities for a while before I can go back and explore all those feelings and tell (g) you what is going on now. So, I’m sorry if I didn’t get back (g) you.

My sister M came along with me last minute to keep Luke awake  on the way to the hospital. Luke has to be sleep deprived going into the EEG so they can get a good sample of wakefulness and sleep brain patterns. WE picked him up from ST/OT (which I’ll blog about later) and headed straight to ACH. Luke weighed in at 23 lbs (WOO HOO!) and was 2ft 5 in which I think is wrong. After getting his updated med list and a few other things we headed to get all hooked up. 

Pretty much it was sheer terror for Luke. I had to lay on top of him while he was on the bed getting hooked up. He’s MUCH stronger than he looks. I was holding his hands down to keep him from pulling of the electrodes and also trying to keep him from kicking me and pushing off to turn over and get away… so sad. He was screaming hysterically and there was nothing I could do to even help a little bit. ::sigh:: Finally, she finished at we got to rock and he nursed. I thought he was never going to fall asleep. Even being sleep deprived and crying hysterically he had trouble falling asleep. He was just so worked up. I prayed and prayed God would let him fall asleep so we could get a good accurate EEG. I prayed for other things too but at the time the sleep thing seemed most imperative. 

When he did fall asleep he kept scaring the bejezus out of me which these whole body myclonic jerks that everyone does when you fall asleep. But, he did it 6 -7 times.. and they were big jerks too. I was certain it would show up on the EEG but the tech said nope. After some sleep they flashed strobes in his eyes which was a great way to wake up an exhausted 17 month old. LEt me tell ya, that kid was haaapppyyyy! [insert sarcasm]

Luke got the electrodes off after that and then washed up and we were led back to the waiting room. We didnt have a very long wait before we were called back to meet the Dr. Sharp. We spoke first with the resident who was a really nice Indian lady who was afraid to touch Luke I think. It was kinda funny but every time she leaned into give Luke five and he made an unfriendly noise she jerked back away! It was comical! She asked a lot of questions about Lukes delayed developments and really seemed curious about which things were being worked on at therapy. 

Dr. Sharp came in and said the EEG was NORMAL! Great news right!? Ohh.. it is. But now this means Dr. Sharp wants to wean Luke off the phenobarb. We pushed against that and he said he saw no reason to start keppra. About here is where I starting feeling a lump in the back of my throat. 

IF the EEG had been abnormal we would have weaned off phenobarb anyways and on to keppra. Changing meds up is risky business and could cause seizures by the way. But, since Luke has been seizure free for 11 mos with 2 clean EEGs he felt secure enough to try to wean him.

Luke is on 8mL twice a day. This dosage is apparently on the higher end for his weight. Also, you can have normal EEGs and still have seizures… soooo…. Now do you see why we aren’t jumping for joy? Also, the average time between last seizure and beginning the process of weaning is typically 2 years… not 1 year like Dr. Sharp is calling for. 

I could take it .. I broke down. Don’t get me wrong, I did hold my composure. I didn’t make a blubbering idiot out of myself although that is EXACTLY what I wanted to do. Funny though, I usually feel so embarrassed at public crying but I really didn’t care what they thought in a way. However, it did get eerily quiet for a minute until Dr. Sharp told Luke to give his mama a kiss.. then we all laughed. Whew. 

He made a good convincing case for weaning: phenobarb is a barbiturate and it slows down the brain function and causes developmental delays which Luke obviously displays. Taking him off the meds could prove to be a great thing if he took off on his development. On the flip side he did warn that maybe the delays weren’t the meds too. Neuroscience is a freaking guessing game. 

He also told me the good, the bad, and the ugly of keppra in case Luke does have seizures while weaning. 

Here’s the plan of action:

After we get back from vacation in early July we will begin to wean.

We have chosen to go the slow route of weaning over a 4 month period vs 2 months that Dr. Sharp suggested at first. (After I cried he said we could go slower)

Luke is currently on 8mL 2x da. Every 2 weeks we would drop 1mL at each med time. So it would go 7mL 2x da for 2 wks, then 6mL, then 5, 4, 3, 2, 1, then skip morning dose and give 1mL at night for 2 weeks.. then none… 

He has prescribed Luke a new diastat pen for emergency meds that is 5mg instead of the 2.5 mg we have now. H’e s bigger boy and would need more meds if he did have a seizure. Also, he said at the 3 minute mark we could administer the meds instead of the 5 minute mark. 

Ya know, just as we were getting comfortable with the idea of being away from him, letting him walk into another room without us, possibly starting to entertain the idea of letting him sleep at night in his crib… we being to wean. After talking with Nick tonight we both agree we can’t go through this and be “reckless” in that fashion. Whether some people think were outrageously overprotective (and I know some of you think we are.. it’s ok) it’s the best we can do to survive this awful fear of seeing him have another seizure. Just thinking back to the last year and a half when all this started makes my stomach turn. 

All in all, I’m so thankful Luke has been seizure free for 11.5 months. God has really worked wonders in our tiny dude. I’m so grateful that he had another clean EEG. I’m so happy that we have a doctor who is literally a leader in his field and is respected in neuroscience. God blessed us with great doctors and therapists for Luke. 

We will see Dr. Sharp in 6 months so he can follow up on Luke’s development. I hope that we don’t have to see him for any other reason. 

Wow, I feel like I can breathe now that I got that off my chest……….. 

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Here’s a self portrait after the appt… notice the unhappy, tired little dude. He perked up a lot after popcorn and splashing in the water table!

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HOW RUDE!

Some of you already know but some don’t..

 

We STILL don’t have the results back from the blood work yet. T at ACH in neurology told me it would be about a week. The lady in the blood lab told me the test took 6 hrs to run but that we were in a later batch at the 7 day mark. So, we waited until 10 days to call T. We figured it was business as usual. The results were probably sitting on someone’s’ desk… not being read. 

Well, it took Nick 2 days until he got a call back from T and she LAUGHED AT HIM… yes, that’s right. The woman who told me it was a week laughed at Nick for calling so early. *grrr* She said it would take 4 – 6 weeks for the results to come back. 

I almost called to file a complaint or SOMETHING but I don’t have that kind of time and everything was fishy so I just gave up. I was fuming though. Seriously. Extremely upset. 

So, I guess we have about 5 weeks maximum left to wait.wait.wait.

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He did it!

Well, he did it and was a trooper! I think if he didn’t have to be touched by someone else he might not have cried!

We should have results sometime within the week. This hotos was taken when we got home. Still looking a little sad. Poor guy!

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By now you’ve probably heard about Nicks post here about Luke’s urine inborn error screen. And you’ve probably already read what it’s about here when I posted several weeks ago. 

Today we’re going to ACH for a serum amino blood test. It will take only a few days to process and get the results back which is much less of a wait than we had on the urine which was sent out. This will be done in house so we don’t have the painful wait. 

We go in today at 3pm. I’m really nervous and sick at my stomach about it all. The session at church is praying for Luke, all the family and some friends are praying for him… I pray the test results were elevated because the urine settled because it was a home collection of urine. I pray that the hypoglycemia was a fluke or is unrelated to PKU. 

The Lord is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower. 
(Psalm 18:1) 

This is what I turn to in my Bible when I need strength.

As the deer pants for streams of water, 
       so my soul pants for you, O God. 2 My soul thirsts for God, for the living God. 
       When can I go and meet with God?

 3 My tears have been my food 
       day and night, 
       while men say to me all day long, 
       “Where is your God?”

 4 These things I remember 
       as I pour out my soul: 
       how I used to go with the multitude, 
       leading the procession to the house of God, 
       with shouts of joy and thanksgiving 
       among the festive throng.

 5 Why are you downcast, O my soul? 
       Why so disturbed within me? 
       Put your hope in God, 
       for I will yet praise him, 
       my Savior and 6 my God. 
       My [c] soul is downcast within me; 
       therefore I will remember you 
       from the land of the Jordan, 
       the heights of Hermon—from Mount Mizar.

 7 Deep calls to deep 
       in the roar of your waterfalls; 
       all your waves and breakers 
       have swept over me.

 8 By day the LORD directs his love, 
       at night his song is with me— 
       a prayer to the God of my life.

 9 I say to God my Rock, 
       “Why have you forgotten me? 
       Why must I go about mourning, 
       oppressed by the enemy?”

 10 My bones suffer mortal agony 
       as my foes taunt me, 
       saying to me all day long, 
       “Where is your God?”

 11 Why are you downcast, O my soul? 
       Why so disturbed within me? 
       Put your hope in God, 
       for I will yet praise him, 
       my Savior and my God.

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We’re still in the middle of TEFRA paperwork and I have handy Lukes eval’s so I thought I would copy over his results. This eval is from 12/29/08 – 11.5 mos. I’ll just hit the highlights.

——–

“…he was refereed for this evaluation due to concerns regarding gagging and vomiting with baby foods as well as concerns regarding his progression of expressive language skills. ”

Notable Medical Info

  • FTNB (full term newborn)
  • Seizure disorder dx at 6 weeks
  • GER with continuing clinical symptoms despite meds (reflux)
  • Chronic ear infections s/p PE tube placement 10/08
  • History of difficulty with weight gain
  • Dairy/Soy intolerance per parent report
  • Chronic congestion/wheezing per parent report
  • Late in achieving speech milestones
  • Chronic snoring at night

Current Meds

  • Phenobarbitol
  • Prevacid

I’ll skip a bunch here. The report is 7 pages but filled with tons of feedback and info. I wish I could type it all out because it’s so interesting. The report outlines behavioral observations, the assesment and exam, oral motor and feeding assessment, oral sensory assessment (taste, smell, feel, etc), liquids, foods, language (PLS-4 0-11 and 1-0 because of his age -11.5mos is border line) and (REEL-3).

The Preschool Language Scale – 4 (0 – 11 months) 

  •  Auditory Comprehension: Standard Score – 86 (low average), Age Equivalent – 8 months, Percent Delay – 27%
  • Expressive Communication: Standard Score – 103 (within average range), Age Equivalent – 11 months, Percent Delay – n/a
  • Total Language: Standard Score – 94 (within average range), Age Equivalent – 9 months, Percent Delay – 18%

The Preschool Language Scale – 4 (1 – 3 yrs)

  • Auditory Comprehension: Standard Score – 73 (moderate delay), Age Equivalent – 8 months, Percent Delay – 33% 
  • Expressive Communication:  Standard Score – 83 (low average), Age Equivalent – 11 months, Percent Delay – 8%
  • Total Language: Standard Score – 76 (moderate delay), Age Equivalent – 9 months, Percent Delay – 25%

 

The Receptive-Expressive Emergent Language Scale (3)

  • Receptive Language: Ability Score – 68 (severe delay), Age Equivalent – 5 months, Percent Delay – 55%
  • Expressive Language: Ability Score – 70 (moderate delay, borderline severe), Age Equivalent – 5 months, Percent Delay – 55%

The report goes on to list his strengths and weaknesses. 

STRENGTHS

  1. localizes sounds
  2. looks at objects when attention is called to it
  3. understands specific words or phrases such as ‘give me a kiss’
  4. sustains attention for play for at least one minute
  5. babbles two syllables together
  6. extends toy to others
  7. produces following sounds: /b/ and /d/ and occasionally /m/

WEAKNESSES

  1. not yet able to respond to ‘no-no’
  2. does not use more than one object during play
  3. does not play appropriately with a variety of objects
  4. does not follow routine with familiar cues
  5. does not identify familiar objects
  6. does not vocalize two different vowel sounds
  7. does not use any words meaningfully
  8. does not consistently vocalize when talked to

It goes on to articulation, voice, hearing and another assessment with impressions and a plan with 6 long bulleted paragraphs.

 

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