Neuro Center

Deep Breath. Ok. Go!

Logen saw Dr Brunstrom yesterday. Dr B and her staff spent a good 4 hours with us. They are remarkable.

1) The "tumor" on Logen's leg was not all removed. She suggests a plastic surgeon remove he rest of the tumor and fix the scar on his leg, he can make it nearly invisable. We knew shortly after the bandage removed that it still did not look right. Once again, there goes my faith in our local Children's hosp. A few pages in Logen's medical chart were removed before they were sent to us. Also fishy.

2) We are going to order a Mckie hand splint with a supinator strap for Logen's left hand. This will help keep his thumb out. Insurance won't pay for it and neither will medicaid- so it's an out of pocket expense. He won't wear it all the time. We will put it on him when he's working (coloring, puzzles, shape sorting, etc)

3) Repeat Swallow Study, done in specific ways. Once it gets closer to time for the study- I will post on this.

4) Growth: he's falling off the charts. No growth has been made since she began seeing him in 2007. We will check his thyroid functions. However, this can also be resulting from a mitochondrial disorder.

5) And for the big stuff.

* She's referring us to John M Shoffner in Atlanta, GA for a fresh muscle biopsy. While there he will undergo more extensive testing as well- a spinal tap, amino acids levels, metabolic functions, genetic testing, etc. The lost of testing they do is long. Check out their website. Wow.

* Dr S will not see us until I have every medical record on Logen from birth to now. Our hosp is not cooperating with me so far. Our ped's office has also called and asked for the EEG on disk. We keep getting told it's to large to copy. They won't release the report either. And, apparently nobody knows anything about the missing pages in his medical history.

* We are looking at possible Mitchondral disorders/diseases now.
* There are many precautions they gave us.
* avoid prolonged fasting. She said not to let Logen go any longer than 8-10 hours w/o food. This means waking him up if he's sleeping.
* avoid extreme exhaustion
* avoid overheating
* all of the above can lead to brain damage if it is mitochondrial

* We are limited in medications for seizure control b/c of the way the body processes the meds. Mito disorder + certain meds = bad!

* Once we do the testing, results for the biopsy take about 3 months to come back. We can have the spinal tap results in 2-3 weeks.

* If we do not get Logen in to see Dr S in the next 3 months, we need to do the spinal tap before hand. We need to eval his CSF neurotransmitters and look for a cerebral folate deficiency. If he has a deficiency a medication can be given to fix! Dr B has seen major improvements with the med! IF we do the testing here, it will take about a month to get back.


ASKING FOR HELP!

* Just to do the testing with Dr S is $20,000.00+. Medicaid will not cover this b/c it's out of state. I am checking into our insurance. The minimum we would pay is 30% of all costs. We also need to get there (16-18 hours away).

* I need ideas on fund raisers. Anything you can come up with be so helpful. Any way you can think of to help us raise money for the testing, we appreciate!

* We also need prayer warriors!!!!! And lots of them! :)

Epilepsy Center Appointment 3/2009

Logen saw Dr . Thio yesterday. Dr Lui Lin Thio is the Director of the Pediatric Epilepsy Center at SLCH. He is a very knowledgable man who spent an hour and a half with us. He made sure we had all of our questions answered plus some! It was wonderful!!!

This is what we learned about Logen regarding sezures:

* We moved from a "seizure disorder" diagnosis to an "epilepsy" diagnosis

* Multiple seizure types- tonic/clonic, myoclonic, and partial

* His seizures are generalized {best he can tell}- meaning they do not start in one area of the brain (those are focalized seizures)

* Dr Thio *thinks* Logen may have "Medically Intractable Epilepsy" meaning medications may not control Logen seizures. He's had 2 drug failures so far. We are limited in medications we can use (above post)

* Possible candidate for Epilepsy surgery- however, since Logen's seizures are not focalized, the surgery may not happen. He considers this a possiblity b/c of the extensive presurgical evaluation. We may do the eval, but the surgery is not likely.

* Vagus Nerve Stimulation (click the name for its description)

* We will increase his Topamax to 15mg, 2x/day. We will begin weaning Keppra soon. Hopefully we can start that in 1 week. It will depend on how Logen reacts to the Topamax.

Missouri Bound!

It's snowing! It was 70+ earlier in the week and it's snowing!!!!!! Crazy weather in the south.

We've been watching road conditions- most say "travel only if absolutely necessary". But, we had 70 degree weather earlier in the week, so the roads cannot be that bad. I think we are going to try to truck to Springfield, MO tonight. They have an AWESOME resturant where they throw rolls at you :) Good southern fried food. Yum. And, Bass Pro Shop. How could we make this trip without stopping there? I could- Adam could not.

From S'field we will be around 4 hours from St Louis (give or take), so tomorrows drive shouldn't be to bad. Monday's weather looks the best- the day we will be in the hospital all day long! Go figure. And, rain Tuesday! The day we drive home. Yippeeee!

I will update as I can. I am on Facebook and you may get more out of my "status updates" b/c I can do those from my phone. As well as pictures. I can upload those instantly. If I'm not your friend, add me :) My email is jklduncan@yahoo.com I think you can add me that way.

Wish us luck!

Our house sitters promised not to pull pranks on us this go around! haha (I posted pictures when we got home from Florida last August)

YAY! An Added Appointment.

St Louis called this morning and they were able to get Logen in to see the Epilepsy specialist right before we see Dr B! I am very excited about this. They said they had to go straight to the Dr and presented Log's case and he said, "Yes. I want to see him. Put him down at 1." YAY!!!!!!!!! We are excited!!!

I am also waiting for the nurse to call me back regarding his meds. He's been on 15mg of Topamax for 1 week now. Since he's been ill, I'm not sure what to think of it. I can't say we've seen an increase in seizures - but we never do when he's ill - so? Guess we go from here. We will begin to taper off of his Keppra (another Yay!) I hate that stuff!!!!!!!

Logen's Got The Flu

We are on day 5 of Type A Influenze (The Flu!) and an ear infection.... He's not had a fever in 24 hours, but his cough is NASTY and he's still not eating. :(

For some reason, his seizures do not increase when he's ill. This should be yet another clue for whatever Logen has b/c this is NOT typical!!!! Right?

Looking forward to St Louis in a few days. Hoping we learn valuable info!!! And, Adam wants to go to Cabella's so bad he can taste it. A few hours in a hunting store. Yea for Mom. Oh, I dread it!

Target Deals

Market Pantry Coupons (NOT available on Target's site! I had to do ALOT of searching for these!) Expire: April 12, 2009

This week Target has Gold fish crackers for $1.00 (WM regular price is 1.88)
They also have sponge bob fruit snacks for a buck.

Looking for more great deals!

I got a loaf of bread last night for 29 cents and Parker's soy milk for just over a buck! I was soooo proud!!!

ONE CENT Appetizer & ONE DOLLAR MEAL at TGIF

Purchase a drink at the bar and get a 1 cent appetizer. Then, head to your table and buy one entree get one for a dollar!

Click HERE

Valid: 3/20/09 to 4/30/09

Happy Cheap Eats! :)

$5.00 OFF Disney's Bolt Movie

Click HERE for a 5.00 off coupon for Bolt.

Wal-Mart has this movie on sale this week!

14.40 (sale price - regularly 19.95)
- 5.00 (coupon)
9.40 TOTAL PRICE

Enjoy a cheap movie! We bought this one to stick in Parker's Easter basket.

Logen Update 3/23

Things are still not great. We started a new med for seizures last week. He's now taking Keppra 2x a day and Topamax once a day for them. I am suppose to call St Louis tomorrow to see where to go next. We are going to be weaning from the Keppra and upping the Topamax slowly. We go to St Louis very soon, I am hoping (as much as I want Logen to get out of this funk) that he stays doing poorly for the next week so that the neuro can see this.

This is the 2nd week in a row that the OT has said his facial muscles are VERY tight. He hasn't eatten much since Thursday. Today, half a blueberry muffin and a few bites of oatmeal. Minimal food. Which, is not helping with the weight gain area. We are pumping him full of pediasure trying our best to sneak in calories where we can. He started running a fever, green snot, and a nasty cough (that can't be suppressed with RX cough med). I am taking him to the ped tomorrow morning, when I called today at 4 we weren't able to get in. He's not sleeping well. He's still tripping and falling on nothing. He seems very weak and tired. Which, could be from lack of food- but I think there's something more there that we are missing. His drooling has increased. I keep waiting for a major seizure that we see with convulsions, but haven't seen anything yet.

Please, Please, Please keep Mr Logen in your prayers.

The Real Deal

I now can access my email from my phone, so I haven't been on my actual computer that much. And, last week was one of my colleges Springs Breaks. This week is Logens and my other schools. Which means, I didn't get a break this year! Agggg
I spent much of last week working on my paper for Microbiology. I have 3 short papers due next week and some Psych stuff.

It's almost bathing suit season and I've been searching for one. I have never had much self-confidence and always thought poorly of myself. Trying on bathing suits has made this worse. I've gone through my days struggling with my "Earthly body". So, thats kinda where I've been at on all posts besides Logen updates. It's something i've struggled with for many years- I'm working on it. My hubby says other people on't see me the way I do. I wish for one day I could see what others do!!!!

10% off at Lowe's

You fill out a brief form (name, address, email) and they send you a 10% off coupon. The deal is, it's for people that are "moving". You can also find this coupon at your local post office near the change of address request forms.
It has a unique barcode, so you can only use it once and the max discount is 500.00!
Click HERE

$10 off at Bath & Body Works (FREE possibility)

Here's a coupon for $10.00 off ANY Patricia Wexler MD Dermatology Product from Bath and Body Works. In store only. EXPIRES April 5, 2009. With this coupon you can find something for FREE! (I went in a bought a 10.00 item with mine- so it was FREE)

Click HERE

FREE Johnson & Johnson Little Green Bath Buddy Bar

Here's a coupon for 2.00 off 2 of the little green bath bar buddies. At Wal-Mart they are 0.97 and at Target they are 0.99 - so this coupon makes them FREE either way you go!!!

Click HERE to print.

EXPIRES April 1, 2009.

FREE Weber Grill Spatula!

There are only 7,000 of these available! Hurry and sign up NOW!!!!

Click HERE

Parker Finally Says I LOVE YOU!

It's 2 seconds long, Watch It! My lil man would not say this for the longest time. He's only been doing it for the past week! We'd say I love you and he'd say yes (or no). I am so happy he says it now! And, it's SOOOO cute!

Sorry! More Logen Test Results

For the blog neglect. Last week was crazy. I was up from 6am Wednesday to 11pm Thursday. I had a test Thursday and I guess once I stay up for a while, my body forgets how to shut off. I also wrote 7 labs reports (was originally 6, but one snuck up on me!) Wednesday.

Logen's 'issues' last week were crazy. Today he's had a hard time walking. He's falling all over the place. He had a few days where he couldn't keep his drink in his mouth (he's on a soft nipple nuby cup, and he's been doing this since he was 3- he was never able to drink from a bottle b/c of poor suck). Saturday in OT, his OT said his facial muscles were very tight- something strange, they've not been that tight in a long time.

We kinesotaped Logen's mouth for 'trial' Tuesday. He held drool is for about 10 minutes (max). His SLP said as long as he does that, we will continue to try it. It peels off very quickly once he begins drooling, so it's not something that we will keep on. I will learn to do this once we perfect the method and placement of tape so that I can tape for feeding. This all depends on if it continues to work of course.

Logen has several appts coming up. We head to St Louis in the next 2 weeks for the Epilepsy Doc and Neuro. Then we head south to our Children's Hosp for Genetics and Endocrinology.

Logen had a bone scan done to determine to the age of his bones. At the time of the testing Logen was 5 years 3.5 months. His approximate bone age was 5 years. The conclusion was normal, but will be addressed at the Endocrine appt. Same with the fact that he's still wearing 4T and has been since Spring 2006. People are beginning to tell us he's getting skinny.

WHY? A lady followed me out of Wal-Mart last night to ask how old my son was, pointing to Logen. I told her 5. She said, oh. Turned and walked back in. Why do people do this? B/c he was walking funny? B/c he drools? I told girlfriend who told me I sould have gone back in and asked why she cared. I told her it didn't matter. That lady was actually nice, many of you know the rude and cruel comments you get.

Parker is doing well with 'no biting'. Tabasco only 4x since Febuary 15!

My Dad & Liz celebrated their 22nd Anniversary yesterday! My littlest Sis turns 14 today and Liz's birthday is tomorrow.

Recent Genetics Clinic Note

A lot has happened in the last week. I received a large packet of medical records on Logen to take to St Louis. I have several things to post- But, I'll start here-

Dear Dr F,
I had the opportunity to see your patient, Logen, in the genetics clinic here at ___. As you may be aware, Logen has a very complicated medical history. He has been seen by mulitple specialists including Neurologists and a neurogentic work up has been initiated. To date, he has had prometaphase choromosome studies, advanced micro-array studies, and chromosome 15 methylation studies. All of these were normal. In brief, then, there is currently no unifying diagnosis for Logen's constellation of problems.

In reviewing his case with his parents then, the major problem list at this point in time include:
1) Significant neurodevelopmental delays (particularly in speech production)
2) Asymmetric spasticity
3) Seizure disorder
4) Lipoblastoma of the thigh
5) Craniofacial Dysmorphisms (on my examination today, I felt he had distinct flattening of the midface, prominent epicanthal folds, and an upturned nose. Below the neck he had no striking congenital anomalies that I could detect.)

I discussed with his parents that he has a very good and thoughtful first round evaluation. A second-tier would be indicated. They were agreeable to this. Given the constellation of spasticity and seizures, I did do MECP2 gene testing and ARX gene testing as well. Also, given the lipomatous tumor on his thigh, I also did PTEN gene testing.

We will follow up with the family once these results are available. ..... I did also briefly broach the possibilty of a third tier of evaluations for their consideration. This would include a work up targeted more towards mitochondrial/metabolic disorders.


~~~~~~~~~~~~~~~~~~~~~~~~~~~

We found out on Monday that the tests above were *normal*. These were the ones we waited over 7 weeks on. He has an appointment to see an Endocrinologist and the Geneticist in early April. We will do the 3rd tier testing at that appointment. And, I'm sure it'll take another 2 months or longer to get those results back.

His Neuro has ordered a spinal tap. There is something (I can't remember- I wrote it down, somewhere!) in the CSF that can cause some of his 'problems'. The only way to know is through a spinal tap (which scares me....)

This week has been off. He's had seizures and his behavior has been very aggressive- he's not listening, behaving, etc. I spoke with a nurse from St Louis every day last week- thats why I just love them . They called ME to check on him. They are working on getting him in to see an Epilepsy Doc asap and the neuro in the same day. (B/c of our travel) Our dr has a 6-8 month wait list, so this isn't easy!

Logen~ Funky Stuff

Logen had a rough behavior weekend. I really think it's the Keppra. His PT didn't know we uped the med and she asked if he was taking anything for muscles problems. (can't remember her exact words) His feeding/drinking is in one of those 'down-hill' slumps. He looses his drink out the corners of his mouth and he's not chewing. Muscle weakness is a side effect of the drug- so I'm wondering if it's messing with his already weak facial muscles.
I spoke with a nurse in St Louis yesterday. Dr B is out sick- so I'm not sure when we will get the 'final say' on the meds. The APN felt it was time for a med change. I am pushing for this. I think we've given the drug a fair go. We are still having seizures and there are just to many side effects of the med to stay on it. It's making Logen 'not Logen'. My baby has always been a sweet, loving, complient little man who loves to eat. There are days when he screams bloody murder b/c hes mad (for an hour or longer), he doesn't eat or his eating is horrible, he just isn't himself. That's the best way to explain it. We don't miss meds- they are given at the same time everyday. We don't dare to mess with it! So, we are back to the original dose until Dr B gives further instruction. We had increased just the morning dose last week- so atleast it's not a major change. I cannot wait to get him off of this med!

Logen

Logen's got infantigo! His seizures are on the rise. Neuro had us give Klonopin on Friday b/c of a weird 2 hr funk/possible seizure that happened on Thursday night. They won't increase the Keppra again b/c it's causing Logen to walk into walls and fall all over himself. This is a side effect of the drug. I wish they would just pull him off of it!!!!! His attitude/behavior has been 'not-so-great'. Also a side effect.
He's on an antibio for the Infantigo and doing well. His face has cleared up alot. The Dr said after 48 hours on the med he wouldn't be contagious, phew! It'd pass on as strep and nobody has a sore throat (yet) so I guess we are in the clear thus far.
I have sent off for the records to go from one Children's Hosp to the other. Once St Louis gets them, they will review and see whats next. We have already been told the next step needs to be a spinal tap. I just don't think we are ready to subject Logen to that.
Pray for Logen!