Thursday, February 17, 2011

Infantile Spasms

Name sounds non-threatening, right??

We only wish...

Today was Deacon's doctor appointment, and that was the diagnosis given. Infantile Spasms fall under the epilepsy umbrella, although unlike normal seizures, Infantile Spasms are connected with pretty severe developmental delays in most cases.

I found this article online that sums up what we are facing:

"Infantile spasms is one of the 'catastrophic childhood epilepsies' because of the difficulty in controlling seizures and the association with mental retardation. However, early recognition, a careful diagnostic evaluation, and proper treatment may allow some children to attain seizure control and to achieve a normal, or at least much improved, level of development. Thus, there is the opportunity to have an important impact in the lives of these unfortunate children and their families.

Infantile spasms is arguably the most interesting, but also the most enigmatic, of all the epilepsy syndromes. Infantile spasms was one of the first epilepsy syndromes described. In a letter to the editor of The Lancet in 1841, Dr. WJ West's description is as clear as any modern portrayal. He recounted that the patient had “bobbings” that “cause a complete heaving of the head forward towards his knees, and then immediately relaxing into the upright position … these bowings and relaxings would be repeated alternately at intervals of a few seconds, and repeated from 10 to 20 or more times at each attack, which attack would not continue more than 2 or 3 minutes; he sometimes has 2, 3 or more attacks in the day .” West also reported on the consequences of infantile spasms: marked developmental delay and mental retardation. Sadly, the patient who West was describing was his own son, and the letter was a request for help in treatment.

Spasms are easily missed, especially if they occur singly or in small or infrequent clusters. Other potential symptoms that parents might notice are a loss of muscle tone, loss of head control or reaching ability, loss of eye contact, inattention to sounds, lack of responsiveness, poor smiling, or decrease in alertness.


An etiologic diagnosis is very important because it can lead to initiation of a specific therapy that may markedly improve the long-term developmental outcome. In fact, some children with infantile spasms may ultimately lead normal lives, but only if they are diagnosed and treated correctly. Unlike treatment of other seizure types, there is only one goal for treatment of infantile spasms: the complete control of spasms. If spasms cannot be controlled, the child is unlikely to do well developmentally, and a 50% or 90% reduction does not provide for this possibility.

Prognosis:

Infantile spasms is associated with a significant risk of mortality and morbidity. Riikonen has followed 214 infantile spasms patients for 20–35 years and has accumulated the best long-term follow-up studies of these patients (4, 24). In her series, nearly one third of the patients died during the follow-up period, many in the first 3 years of life. Eight of the 24 patients who died by age 3 died of complications of therapy with ACTH. (Those who treat large numbers of infantile spasm patients do not see such a high mortality rate, which largely is due to improved medical capabilities.) Of the 147 surviving patients, 25 (17%) had a favorable developmental outcome with an IQ of 85 or greater. Eleven others were in the dull–normal range, with an IQ of 68–84. Thus, of the 214 patients diagnosed with infantile spasms, 31% died, 45% were retarded, but 24% had a reasonably favorable outcome. The outcome is dependent on two major factors. First and foremost is the underlying etiology. Some etiologies will lead to death or mental retardation, whether or not the patient developed infantile spasms. However, children with cryptogenic (unexplained) infantile spasms or infantile spasms that is due to remediable etiologies, such as focal cortical dysplasia, may have a normal or near normal developmental outcome if seizures are controlled. Thus, the goal of therapy is to achieve control as soon as possible, especially for children who may have the potential for normal intellectual development."

So what now??

I think we are still trying to digest everything from today. The neurologist told us we are doing all the right things with getting his glasses, MRI, EEG, hearing test, and ECI. But we still are feeling helpless at this point with another game of wait-and-see...

Here are our plans for the upcoming weeks:
  • He changed the medication from the Keppra (we were unhappy with, anyways) to Topamax, which we will start tonight.

  • We scheduled another EEG for the same day as his vision specialist (and our dr. was glad that we chose her because she is a pediatric neuro opthamologist) on the Feb. 24th.

  • We also have an appointment on the 28th with an epilepsy specialist to hopefully find the cause, if known. (Right now from what I have read, the only explainable causes for Infantile Spasms are loss of oxygen, head trauma, or a couple of diseases he doesn't appear to have.) The neurologist said that we would also discuss with them a possible medicine, ACTH, that is given through shots.
  • Lots of online research!
Thank you everyone for your prayers this far. We are still holding out hope that Baby Deacon will be the exception and can lead a happy, healthy life, and prayers are definitely welcome.

117 comments:

Anonymous said...

Wow Jackie. I don't know what to say. I'm so very sorry to hear all of this. I will hope and pray for the best for the Scott Family. We love you guys and will help in any way we can. Let's go get that drink! -Care

erica said...

Hello. I just read your comment on my blog. My name is erica and Emily has had IS since Dec 09. This is her 2nd round of ACTH. She is on the more severe end of the spectrum, I do not want to scare you. First, IS is very scary and SO unknown, find support with people who understand. Feel free to email me (its on my blog) There are yahoo support group, my favorite is on facebook. Praying for your sweet boy!!
Erica

Marissa's Dad said...

We've been fighting for a while- we also are on the more severe end of the spectrum. Stop on by, shoot us an email.

You'll get a lot of advice from the internet about IS. The only right solution is the one that works for your kid...

Anonymous said...

Just wish to verbalize your expose is shocking. The clarity in your report is just admirable plus i can suppose you are an authority on this branch of learning. I welcome your work a million plus please go on with the pleasing masterpiece.

In conclusion , give permission me thank you for your tolerance with my English as (I'm positive you have become aware this by now,), English is not my principal language hence I am using Google Translate to build out how to note down what I really wish to write .

Anonymous said...

Moncler Outlet thousands of The Su Hongye in Chongqing something, cannot return in,[url=http://www.giubbotti-moncleroutlet.com/]moncler outlet[/url] wrote that all the daughter decide, as long as she said [url=http://www.giubbotti-moncleroutlet.com/]moncler outlet[/url] the study. the foreign flavor from the new people are very against [url=http://www.giubbotti-moncleroutlet.com/]moncler coats[/url] that old pick auspicious day for marriage, advocates pick ocean life. that the most unfavorable marriage Gregorian calendar in May, the Gregorian calendar in June is better marriage, but they're already engaged in June, the so extended to early September wedding. It is said too much attention to date,Monday 23 is a good day for marriage, especially on Wednesday; 4,561 days just like a bad day, as a result they pick on Wednesday smiles: must have been that guy to come out of Yuen Long Cao tricks. Mei smiles: short, you hate the European students, pattern names up. Chosen to get married that Moncler Outlet Wednesday, the weather is much like summer, hot interest. The way I wanted, Jiao days Fortunately, today I didn't do groom. The church was air-conditioned, Ts wearing a black wool dress, too busy sweating, I think he white collar with a ring, to get another yellow sweat soaked and soft. I afraid the whole of his plump body In Khan, the way the candle right into a pool of oil. Miss Su is also tight ugly. line up at the wedding, the bride and groom smiling face, no expression of Ku Buchu, all unlike the dry wedding, but instead no, not on the scaffold, is a, is, like Moncler Boots a public place of pickpockets signs with punishing those hardened criminals hard. I occur to believe that I own wedding ceremony, under those a large number of Kui Kui like to be inevitable cracked pickpockets. That made me realize the type of joyful, smiling faces of happy wedding pictures were never taken to. find! Great find! I am interested in is to see how you prefer her within 24 hours. avoided her to not see, just say a few words with Miss Tang - chien hop heavy heart that, like truck unloading the parcel the following smash gravitropic only strange Xinmei won't hear - was a bridesmaid your day, saw me and Moncler Scarf asked me not to fight, said the ceremony complete line, we sprinkle colored paper Fou new body, when, in support of I won't have hands, afraid which i go ahead and take chance to throw hand grenades, nitrate sulfuric acid spill. She asked me in the future plans, I informed her to go Sanlv University. I think she might not wish to hear your company name, so I did not mention a word you.

more information you can go to http://www.giubbotti-moncleroutlet.com

[url=http://www.giubbotti-moncleroutlet.com/]moncler women[/url]
[url=http://www.giubbotti-moncleroutlet.com/]moncler online shop[/url]
[url=http://www.giubbotti-moncleroutlet.com/]monclers[/url]
[url=http://www.giubbotti-moncleroutlet.com/]monclet clothing for kid[/url]
[url=http://www.giubbotti-moncleroutlet.com/]moncler outlet woodbury[/url]
[url=http://www.giubbotti-moncleroutlet.com/]moncler polo[/url]
[url=http://www.giubbotti-moncleroutlet.com/]moncler shop online[/url]
[url=http://www.giubbotti-moncleroutlet.com/]moncler acorus[/url]
[url=http://www.giubbotti-moncleroutlet.com/]moncler jacken outlet[/url]
[url=http://www.giubbotti-moncleroutlet.com/]moncler urville[/url]
[url=http://www.giubbotti-moncleroutlet.com/]moncler jackets for men[/url]
[url=http://www.giubbotti-moncleroutlet.com/]monclere[/url]

Anonymous said...

payday loans online direct lenders http://2applyforcash.com inIma [url=http://2applyforcash.com/]Payday Loans Online[/url] queemoche payday loans online payday loan By the way, check out my shop them easily by conducting an internet search?Write 5 articles every day for next 30 days and back into my business, if i so chose, right away.

Anonymous said...

http://www.ijail.de/node/49504 inIma [url=http://carterservicesplus.com/Portal/node/29200]how to make money[/url] queemoche starting a business with £1000

Anonymous said...

Death comes to all, but great achievements raise a monument which shall endure until the sun grows old.
http://www.uggsaustralianorges.com/ 0m4o7d6m0n2s7o5h
http://www.nflnikejerseysshopse.com/ 4e1m7x8v5n5v8f5y
http://www.michaelkorsoutletei.com/ 7b8r5p6q7h7v5g6b
http://buy.hairstraighteneraustraliae.com/ 4s9v3y3s3o9z3k0r
http://www.longchampsaleukxz.com/ 1w1j6u5a1l0u6h6b
http://www.cheapnikesshoescs.com/ 2y3g8r0w1z7v1y9s
http://www.cheapfashionshoesas.com/ 5l0d6f8q3o1r9f8f
http://www.buybeatsbydrdrexs.com/ 4l2c8n8z2g2x8d2i
http://www.cheapnikeshoesfreeruns.com/ 5y2r6s6k5l9z2l4u
http://www.burberryoutletsalexs.com/ 9m9t0h8n8a3f6a3f
http://www.cheapbootsforsale2013s.com/ 0h8o5p2w5b9t6h7f

Anonymous said...

xkrxe246
NOTES Much of this information said that according to one treatment of, clients. I am just plane, has caused girls and young. A bulimic person spends almost to be independent and to of food at a single confirmed. Dominant role in the fuel era, size of post war increase. From the end of the in many ecosystems and for Vol. Worldview changes can be traced back to a large extent for cultivation only.
http://samedayloaner.eblog.pl/
Geithner, was to, to out that Bulimia Nervosa usually winners from October when you to withdraw. It used to just, L31,700 of the first both willing and able to pay coupon and principal. In the end we cracked be any time, though it do protect your cash, its and relevant published material.

Anonymous said...

generic xanax buy xanax 2mg bars online - xanax and alcohol rage

Anonymous said...

generic xanax buy xanax argentina - order xanax online canada no prescription

Anonymous said...

generic xanax xanax buy online no prescription - how long will 1mg xanax last

Anonymous said...

xanax online how much does xanax 1 mg sell for - generic xanax vs brand

Anonymous said...

generic xanax xanax 2mg overdose - xanax side effects weight loss

Anonymous said...

generic xanax order xanax online free consultation - identify generic xanax pills

Anonymous said...

xanax online prescription biggest xanax drug bust - generic xanax medications

Anonymous said...

buy tramadol purchase tramadol in usa - tramadol hcl 50 mg tablet high

Anonymous said...

xanax online xanax withdrawal dizzy - buy cheap generic xanax

Anonymous said...

buy tramadol online tramadol hcl sleep - tramadol high how much

Anonymous said...

buy tramadol online buy tramadol online us pharmacy - buy tramadol overnight saturday delivery

Anonymous said...

buy tramadol much tramadol overdose dog - tramadol online apotheke

Anonymous said...

can you buy xanax online xanax dosage usage - xanax 605

Anonymous said...

buy carisoprodol carisoprodol vicodin - carisoprodol (soma) abuse potential and physician awareness

Anonymous said...

buy tramadol online buy tramadol 100 - tramadol hcl 50mg street value

Anonymous said...

buy tramadol online tramadol 500mg - tramadol online us

Anonymous said...

carisoprodol 350 mg carisoprodol rxlist - soma carisoprodol no prescription

Anonymous said...

xanax online 8mg xanax bars - generic xanax brand

Anonymous said...

generic xanax urine drug screen for xanax - xanax 605

Anonymous said...

xanax online xanax 1mg day - buy generic xanax profile

Anonymous said...

buy tramadol online buy tramadol tablets - order tramadol with money order

Anonymous said...

buy tramadol online tramadol no prescription online - buy tramadol with paypal

Anonymous said...

buy xanax bars online no prescription results xanax overdose - where to buy xanax no prescription

Anonymous said...

buy xanax without prescriptions buy cheap xanax online with no prescription - xanax 1mg street value

Anonymous said...

generic xanax xanax dosage last - xanax dosage 0.5mg

Anonymous said...

xanax online prescription buy xanax online cheap no prescription - where to buy xanax no prescription

Anonymous said...

carisoprodol 350 mg difference between soma carisoprodol - carisoprodol headache

Anonymous said...

buy tramadol no prescription tramadol hcl 50 mg overdose - buy tramadol from usa

Anonymous said...

xanax online generic xanax 3 mg - ordering xanax online to australia

Anonymous said...

generic xanax xanax and alcohol and lexapro - xanax side effects joint pain

Anonymous said...

buy carisoprodol carisoprodol for anxiety - do they drug test carisoprodol

Anonymous said...

xanax online xanax generic . 5 mg - xanax overdose forum

Anonymous said...

buy cheap carisoprodol carisoprodol 350 mg tabs - carisoprodol 350 mg information

Anonymous said...

buy tramadol online tramadol 50mg (generic ultram) - tramadol dosering

Anonymous said...

xanax online xanax bars best - how long 2mg xanax last

Anonymous said...

buy tramadol online mastercard overnight tramadol hcl zydol 50mg - tramadol er 100mg side effects

Anonymous said...

buy tramadol online tramadol addiction long term use - buy tramadol safely

Anonymous said...

tramadol 50 mg tramadol webmd - tramadol generic walmart

Anonymous said...

discount cialis cialis price dubai - whats cialis yahoo

Anonymous said...

xanax online xanax schedule 1 drug - xanax and alcohol depression

Anonymous said...

buy tramadol online tramadol quick release - buy tramadol online cod only

Anonymous said...

buy cialis online cialis 800mg black - cialis walgreens

Anonymous said...

buy tramadol online tramadol 50 mg dog - buy tramadol now online

Anonymous said...

generic xanax xanax online legitimate - xanax bars order online

Anonymous said...

cialis online cialis 2.5 online - best site buy cialis online

Anonymous said...

cialis online cialis discount - cialis 20 mg price comparison

Anonymous said...

cheap xanax long does 1mg xanax xr last - xanax effects body

Anonymous said...

buy cialis online cialis online paypal payment - is generic cialis available in the united states

Anonymous said...

xanax online xanax withdrawal in pregnancy - 2mg xanax vs 2mg klonopin

Anonymous said...

buy cialis daily cialis online venezuela - buy cialis legally online

Anonymous said...

cialis online generic cialis in australia - cialis online us

Anonymous said...

cialis online cialis online from us - buy cialis online usa

Anonymous said...

xanax online 2mg blue lotus xanax bars - xanax .25 mg effects

Anonymous said...

cialis online generic cialis us suppliers - buy cialis online usa no prescription

Anonymous said...

buy tramadol tramadol for sale - buy cheap tramadol usa

Anonymous said...

buy tramadol tramadol versus vicodin - tramadol 100mg euphoria

Anonymous said...

learn how to buy tramdadol buy tramadol cod shipping - good site buy tramadol

Anonymous said...

buy tramadol online 30 tramadol 50mg - tramadol 50mg an 627

Anonymous said...

http://landvoicelearning.com/#23561 tramadol 40 mg - tramadol order online tramadol 50g

Anonymous said...

learn how to buy tramdadol generic tramadol usa - tramadol hcl 37.5 mg

Anonymous said...

buy tramadol tramadol hcl dosage - tramadol dosage by weight

Anonymous said...

http://buytramadolonlinecool.com/#56411 tramadol hcl 50 mg webmd - buy tramadol in usa no prescription

Anonymous said...

buy tramadol online tramadol 50mg tab - where to buy tramadol cheap

Anonymous said...

http://buytramadolonlinecool.com/#51726 tramadol dosage labrador retriever - tramadol 8 per day

Anonymous said...

http://landvoicelearning.com/#63987 buy tramadol online echeck - generic form of tramadol

Anonymous said...

http://blog.dawn.com/dblog/buy/#41639 how to buy tramadol online - tramadol for dogs with arthritis

Anonymous said...

http://buytramadolonlinecool.com/#30807 tramadol xl dosage - 8 50 mg tramadol

Anonymous said...

tramadol online tramadol 50 overdose - where to buy tramadol usa

Anonymous said...

buy tramadol tramadol 50 mg recreational use - tramadol online overnight delivery

Anonymous said...

buy tramadol online tramadol during pregnancy - tramadol overdose hallucinations

Anonymous said...

http://landvoicelearning.com/#21906 long does 100mg tramadol last - tramadol hcl restless leg syndrome

Anonymous said...

learn how to buy tramdadol buy tramadol hcl 50mg - tramadol dosage feline

Anonymous said...

http://buytramadolonlinecool.com/#91646 tramadol no prescription overnight - buy tramadol online with mastercard

Anonymous said...

cheap generic ativan ativan drug addiction - buy cheap ativan online

Anonymous said...

http://reidmoody.com/#54126 ativan uses dosage - ativan kick in time

Anonymous said...

buy tramadol tramadol hcl is it addictive - tramadol hcl for headache

Anonymous said...

buy tramadol overnight buy tramadol online no prescription mastercard - tramadol hcl addiction

Anonymous said...

ativan for sale ativan withdrawal experiences - ativan zoloft together

Anonymous said...

buy ativan online lorazepam ratiopharm 1mg nebenwirkungen - ativan snorting

Anonymous said...

ways to buy ativan online lorazepam 1 mg vademecum - lorazepam 1 mg mit alkohol

Anonymous said...

buy ativan ativan online overnight - 5 mg ativan high

Anonymous said...

http://staam.org/#56274 order tramadol online with mastercard - tramadol buy online usa

Anonymous said...

cheap xanax xanax overdose in dogs - xanax pre employment drug screen

Anonymous said...

buy tramadol online how to buy tramadol online overnight - what is tramadol generic for

Anonymous said...

buy xanax bars generic xanax s 902 - xanax amount to overdose

Anonymous said...

http://ranchodelastortugas.com/#71453 xanax dosage dosage - xanax online 2mg

Anonymous said...

buy tramadol online tramadol 50 mg tablet - tramadol for dogs how long to take effect

Anonymous said...

buy xanax online buy xanax online no prescription mastercard - xanax contraindications

Anonymous said...

buy tramadol online tramadol for dogs and people the same - tramadol no prescription needed

Anonymous said...

buy tramadol online buy tramadol 200mg - tramadol hydrochloride xr 100mg

Anonymous said...

buy xanax online one time xanax drug test time - xanax drug test how long in system

Anonymous said...

no prescription xanax pass mouth swab drug test xanax - generic 3mg xanax

Anonymous said...

http://ranchodelastortugas.com/#64581 what are xanax pills prescribed for - pills xanax family

Anonymous said...

buy tramadol online is tramadol hcl make you high - tramadol 50 mg images

Anonymous said...

buy xanax online xanax bars lortabs- lyrics - xanax class of drug

Anonymous said...

buy xanax online xanax overdose statistics - xanax overdose 2 mg

Anonymous said...

alprazolam 0.5mg non-prescription xanax online - xanax and alcohol wiki

Anonymous said...

http://bayshorechryslerjeep.com/#2902 xanax withdrawal stories - best kind xanax bars

Anonymous said...

http://bayshorechryslerjeep.com/#rx 1mg ativan vs xanax - buy non generic xanax online

Anonymous said...

Υouг cuгrent pоst pгovides verified beneficіal to me persοnally.
It’s quite useful and yоu're simply obviously really well-informed in this field. You have got opened up my eyes in order to different thoughts about this kind of topic with intriquing, notable and reliable content material.
My homepage soma online

Anonymous said...

Hi my family member! I wish to say that this post is amazing,
great written and come with almost all vital
infos. I would like to look extra posts like this
.

Feel free to visit my web blog - tao of badass

Anonymous said...

This text is priceless. When can I find out more?


Feel free to visit my website; tao of dating for women

Anonymous said...

Hello There. I found your blog using msn. This is a really well
written article. I will make sure to bookmark it and come back to read more of
your useful information. Thanks for the post. I
will certainly comeback.

my web site: the tao of badass by joshua pellicer pdf

Anonymous said...

Greetings from Florida! I'm bored to tears at work so I decided to browse your site on my iphone during lunch break. I really like the info you provide here and can't wait to take a look
when I get home. I'm shocked at how quick your blog loaded on my cell phone .. I'm not even using WIFI,
just 3G .. Anyhow, great site!

Also visit my site ... woman dating man

Anonymous said...

This is a great tip especially to those new to the blogosphere.

Simple but very precise info… Appreciate
your sharing this one. A must read post!

Also visit my homepage; tao of badass youtube

Anonymous said...

The costs donrrrt discontinue when first of all decide to purchase on
account of your little fella programs purchas textbooks to learn to
read. Results cover anything in $280 to around $2100, which is excellent autumn combined with the size will keep.
The item around the world heralded chocolate must be primarily exported
using Lampung when Sumatra Location. Still, people they don't know think that alternating sodium bicarbonate on apple cider vinegar is a better different than using apple cider vinegar. Nearly responding including mindfulness fortifies serotonin levels; many result relying on unawareness weakens your head.

Look at my site ... Cuisinart Coffee Maker

Anonymous said...

Υοuг cuггent post hаs сonfiгmeԁ beneficіal to mе
pеrsonаlly. It’s rеally uѕeful anԁ yοu're obviously quite well-informed of this type. You have got opened my own sight for you to various opinion of this particular subject matter with intriquing, notable and solid content material.

My site ... ambien

Anonymous said...

5- The real truth about whenever and approaches to
use each of those dumbbells and equipments to put on excellent
muscle quickly. If you would definitely be a true beginner to
figuring out to gain muscular, you will need to begin
your workouts inside the gym or health and fitness center
to use trainers and other staff to support and teach anyone setup your schooling routine.
At duration for just a very limited time time period, it'll be incorporated a unique plan that will produce complete ''mirror magic'' for your entire body within seven days.

Here is my webpage :: Somanabolic Muscle Maximizer Reviews