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Sunday, January 31, 2010

So far so good . . .

We have only had two days of the wean - of the vigabitran - 250 mg in the morning and 500mg at night - but so far - we haven't seen any seizures - we are still praying that this wean will go smoothly.

Saturday, January 30, 2010

Today we are beginning to wean Vigabatrin/Sabril

Brextin has been on Vigabatrin ever since he was DX with Infantile Spasms at the age of 4 months. The drug has been illegal in the US until just recently - due to possible vision loss - however the FDA has just approved it for the US - however regular eye exams are required and a ton of paper work needs to be filed. Since we couldn't get it in the US we had to buy the drug from Canada which means the drug was never covered by insurance - so we as parents are grateful to be able to spend that money towards other therapies that may help further his development instead. We are looking in to AIT training He would be able to receive the therapy in Hudson, WI - which is about 1 hour away - during the Summer while I have off.

Our neuro doctor from Mayo thinks his seizures could be controled without the use of Vigabatrin and has hopes of Brextin only needing one drug to control his seizures - which would be generic Keppra. (currently taking 1ml twice a day) So we are attempting to wean him off of Vigbatrin in the next 3 weeks. He has been taking 500mg in the morning and 500mg at night. This morning he was given 250 mg and tonight he will be given 500 mg- we will do this for one week and then continue to decrease his amount of the drug.

I was grateful to wean him off of toppamax just a couple of weeks ago - and am glad that he will have less drugs in his system -

Our neuro just communicated to me that he will be out the United States for the whole month of February and his colleagues will be covering for him - which scares me - I often do not like to take anybody else's advice other than our main neuro - so it should lead to an interesting month -

He is scheduled for a 24 hour EEG this coming Friday - to see if his brain waves have improved or worsened since the weaning of two drugs. Since I will be teaching - Andy will be attending this visit.

Monday, January 25, 2010

Look at Brextin standing with support!!!

We have had this toy for a LONG time and I have tried and tried to have him hold onto it - but he has never really gripped the handle so I was thinking about getting rid of it - however tonight - he actually grabbed the handle and stood for quite sometime - with a firm grip.

I was nervous at taking the video and the pictures - since he still lacks the balance and could just tip over - but I am just smitten with how long he actually stood for (including bouncing and maintaining balance)- he still hasn't take any steps - with the toy - but hopefully he soon will -

We continue to pray for him to move forward!!

Saturday, January 23, 2010

Brextin's brother and his love for broccoli!

I don't post a ton on Brextin's brother - but I couldn't resist this photo - It was his special day at school and he could select any type of food item to bring - and he selected - broccoli - (He looks so proud) We told him when he was little - that broccoli makes you run real fast - and ever since then - he can't get enough of the vegetable - which is odd - since mom doesn't eat a ton of veggies, especially broccoli.
Needless to say - most of the broccoli came back home - since it wasn't a real hit at school - we did however sneak some fish crackers to the teacher as well - just in case :-)

Here is Brextin being active on his Wingbo swing!

Brextin usually isn't that active on his Wingbo swing - but today he was really active - so I shot a video of him. Isn't he adorable!

I also connected with another parent - right here in town - who's son is very close to Brextin's age who also suffers from Infantile Spasms - and they are having a benefit for their son tomorrow - here is a link to their son's story- he is moving forward with his development much better than our son - he is a true miracle! -

Friday, January 22, 2010

Just an updated video of our little guy.

Nothing new - I just wanted to add a video - I haven't added any lately -
He had a follow up appointment today because of his bloody ear a couple of weeks ago - but everything checked out - OK

Plus he has been making some strange sounds lately with his throat so I added a video of that as well - I had my husband check with the ear/nose/throat Dr. today to see if it was something we should be concerned about - but she said it wasn't anything on her end. Our daycare provider thinks it is a new sound that Brextin is learning to make and that he is interested in hearing himself make the new sound so he is doing it over and over again. hhmm

We have noticed his two lymph nodes that are under his arms are getting larger as well - but currently no one is alarmed by them - but us.

Thursday, January 21, 2010

Brextin's home to stay after today!! Yippie

I sure have missed my little guy - he has now had 80 hyperbaric oxygen dives. We are uncertain if we will plan on doing any more - a lot will depend on if we will see any more improvements. The biggest thing that we have seen is - how much he has improved on his suck - however our birth to three department was working on this prior to the dives - but the oxygen might have helped with speeding up the process - however we are uncertain - he doesn't suck 100% all of the time - but we are hoping it will improve over time and he will no longer need his G-tube.

Tuesday, January 19, 2010

All is well . . .

I just got word - that Brextin is doing well - last night he was able to sit up and begin to play with his chew toy - then he zonked out for the evening. All I can do is continue to pray that he will remain seizure free today and the oxygen dives will be successful - he is expected to come home to stay this Thursday.

Monday, January 18, 2010

I wonder why certain things happen in life?

I thought we were on a right path with the increase of his generic Keppra to 1ml since - Brextin has been 4 days seizure free - however . . .

I just heard from my relative in Madison and they just mentioned that Brextin just experienced a very bad seizure - lasting about 3 to 4 minutes and that they needed to administer Distat - which is a drug that is given in the behind to help end the seizure. I have been informed - it helped end the seizure and that he is currently just in a daze - if he is unable to snap out of it - he will he heading to the nearest ER -

It just burns me - that I am 3 hours away from him and am unable to do anything but pray. Why is it that my son has to go through so many battles and obstacles - hasn't God figured out that my son has had enough road bumps in his life that he deserves to have smooth road ahead of him.

I am so frustrated that I could place my head in a pillow and just scream!! I just wish I could wrap him in my arms - eeergh!! I HATE these seizures!!!

Sunday, January 17, 2010

Family Hope Center in PA - anyone have success?

A parent on my Infantile Spasms list serve mentioned that her son's miracle came from attending the seminars and workshops at the Family Hope Center in PA - but it is expensive - the three day seminar - is $615 for one parent - $1000 if both parents attend (It is my understanding the child may not attend this session - so even if I was to attend- I have no idea as to who would watch Brextin) - Here is the agenda for all three days:

First Day:
Introduction – the Staff – Objectives and Goals
Understanding Your Child
The Source of Your Child’s Symptoms
The Degrees of Neurological Disorganization
The Integrative and Developmental Progression Chart
Evaluation and Diagnosis of Your Child
Questions for the Staff

Second Day:
How the Brain Functions
How the Brain Grows
The Principles for Creating an Excellent Program for Your Specific Child
The Foundation of Your Therapy Program – an Integrative Medical Approach
The Vital Importance of Oxygen for Your Child’s Success
How to Improve the Sensory Pathways
Teaching Your Child – the Fundamentals
How to Improve Your Child’s Ability to Learn
How to Improve Your Child’s Coordination
Questions for the Staff

Third Day:
The Vital Importance of Excellent Nutrition for Your Child’s Success
How to Improve Your Child’s Mobility Function
The Importance of ‘The Family’
How to Help Your Child Mature Socially
‘Mastering the Hour’ – Getting the Most Out of Your Day
Parent’s Certification and Comments

You would then pay an additional $3,450.00 to participate in a two-day appointment - Click this link to learn more - (Some parents said some insurance carriers do cover this appointment - since mine won't even pay for the feeding tubes to feed our son via g-tube my guess is that they will not approve it)

My husband of course is leery - I have emailed the center to receive some more information - I want to try anything that might help our son - I just don't want to be taken for our money - and given false hope!

Is this the flu or just an upset stomach??

Brextin was seizure free as of yesterday - however the vomiting has returned - He threw up at least 3 times during the day yesterday - and then last night it got intense - he began to get a cough - so each time he coughed - he basically choked and so we were again parents sleeping with one eye open.

We gave him his nebulizer last night (to help with his breathing) - and just gave him liquids this morning - in hopes he will keep it down. My question to you is how long can you keep a bottle of Pedialyte? Out bottle reads Exp 01/11 however it states that you need to use within 48 hours of opening (we used this bottle a couple of months ago) so does it really need to be thrown out?- The bottle is only 1/4 gone - I would really hate for it to go to waste - and really don't feel like running to the store to get some - knowing I have a full bottle in house.

At this point I chose not to use it - to be on the safe side - but did not toss it - I gave him water and apple juice. I sure hope this is a 24 hour thing -because he is miserable - and I mean miserable - Plus he is to head back to Madison to finish up on his last 8 oxygen dives.

Please pray for his health - he needs to fight this terrible/horrible cold!!

Saturday, January 16, 2010

Still seizure Free!!

He had no seizures on Thursday, Friday or yet today - it has been amazing!!! We had respite come this morning so I could take a trip to Wal-mart and get some daily items - I am telling you I am loving respite - If you currently do not have respite - I strongly suggest you check out -

A nurse came to our home and did an eval on Brextin- and notified us that we qualify for 5 hours per day - (our Medicaid covers the care worker) We don't use respite as much as we should. At first I was nervous about having a stranger watch our little guy - but once we met - I knew she would take very good care of him - she is actually studying to be a nurse - so luckily we will have her for about 2 more years as she is finishing off her degree. Nursing runs in her family - since her mother is a nurse also.

I haven't been so lucky with the suck - I keep trying - but the little guy only does it when he so desires.

He hits the road one last time tomorrow and will be done with the dives this Thursday - we will then be back to normalcy in our house hold.

Thursday, January 14, 2010

Praise the Lord!! NO seizures today!!

I just got a phone call and was told that Brextin didn't even have ONE seizure today - our prayers have been answered!! Oh how we pray for more days like this!! Our relative said that he is really really doing well with sucking - which is wonderful news - still only taking about 8 bites of baby food at each feeding period and then pooling it - but hey - I am so pleased with hearing he hasn't had one seizure today and that he is still doing well with his suck!!

I am so anxious to see him tomorrow!

Way to go Brextin!!

I love RESPITE!!

Our wonderful respite care worker came last Saturday - and was able to watch Brextin along with our oldest son - which allowed my husband and myself a night out. It has been A LONG time that we have been to dinner and a movie - and it was wonderful! We saw "It's Complicated".


The number keeps climbing (8 seizures yesterday)

I am sad to deliver bad news - he had 8 seizures yesterday - we have been in contact with his neuro from Mayo and am trying to figure out the next move - we are going to try to put the wean of vigabitran on hold - if at all possible until we get his seizures under control. We have increased his generic Keppra to 1 ml - we started him at .6 ml.

However I have been told he is doing awesome with working on his suck -

I am excited to be reunited with him tomorrow - but will miss my 8:00 bedtime (I have been going to bed the same time that I put my oldest son to bed - and I have been loving it!!) Our relative will then head back to Madison with Brextin on Sunday and return again on Thursday. He will then will have had 80 oxygen dives.

I will write more once I see him this weekend.

Tuesday, January 12, 2010

5 more seizures as of 3:00 today - EERRGHH! Please make them Stop!!

I just called our relative who is taking care of Brextin and they indicated he had 5 seizures as of 3:00 today. We have been struggling with seizure control ever since we ended Topamax this past Thursday. We have been told to continue to increase his generic Keppra until we have seizure control. He is currently on .8ml so we have increased it to .9ml - I have emailed our neuro to get support - but I got an auto response indicating that he is currently out of town - so I called his nurse at Rochester Mayo and she said she would pass along my concern to him in the morning - and that we did the right thing by increasing his meds to .9ml

My husband wishes we never ended Topamax because we had seizure control and I understand where he is coming from - however there has got to be a different drug that will stop his seizures as well other than Topamax. Maybe Keppra won't be our next miracle drug - time will tell - however we are praying for the seizures to end - and for him to begin to enjoy life and further development.

My other concern is that our neuro wants to wean him off of vigabritan as well - starting in one week - since we only have 3 weeks of the medicines left on hand - We will need to wait and see - I am not ok with a wean if we do not have seizure control.

Sunday, January 10, 2010

Brextin had two seizures today - eergh!!

I just emailed our neurologist telling him we are now 100% off of the drug called, topamax. However he is also interested in weaning our son off of vigabritan a.k.a Sabril. So starting in one week we will drop down one sachet of the powder drug until we have no more packets left. (He is currently taking 1,000 mg)

I explained that we are still seeing an increase in seizures - so his plan is to increase Brextin's amount of Keppra (he is actually on the generic version) - until his seizures are under control. Currently he is taking .8 ml.

The past two seizures have made me a tad nervous - both of the seizures he had today - caused him to throw up - but the strange thing is - he is beginning to get a rash on his skin - red blotches are appearing on his face and his neck/chest area- however - minutes later he appears fine as if nothing even happened to him - it is bizarre!

As each seizure occurs I continue to pray to have them stop and never return - hopefully one day - our prayers will be answered!

Can other mom's relate?

Let me begin I love my husband but a situation just occurred about 2 seconds ago - he saw me typing on the computer and made a lovely comment , "I see you on the computer again!" Which makes me feel guilty - however I am on the computer for two reasons:
1) To check my list serves that I belong to - in hopes to connect with other parents about certain topics - maybe it is about drugs, therapies, toys, etc.
2) Update my son's blog -

(I consider both of the above to be my outlet)

Yet he can enjoy himself at our local YMCA to play racquetball - at least 2 days a week - yet sometimes 3 days a week - each time he leaves for the Y - he is gone for at least 4 hours each time -

But yet he can complain that I am on the computer - "REALLY!!" If I was to add up all of my minutes as I sit on the computer - it would come no where come close to 8 hours.

Can anyone else relate???

My free time is spent all on my son - and if I leave to do some shopping - I hear - how could it take you that long to shop - really!!!

Yet he tells me that I need an outlet - Is it a guy thing?? I am beginning to lose it!!

Saturday, January 9, 2010

Brextin's home for the weekend :-)

Today was a rough day - out of no where - Brextin threw up - my husband asked me if he had a seizure - and I don't believe he did - He was in 4 point rocking back and forth and then all of a sudden his lunch came right up - so I quickly scooped him up and gave him a bath.

We are still working on his suck - he is sucking about two times per meal through a straw (not even a special straw - just a "normal" straw - which is major progress.

A couple of weeks ago I weighed him and he weighed around 21 pounds and today he weighs 23 .7 pounds - I wonder if the Topamax had anything to do with him not gaining any weight.

As of today - he is totally OFF Topamax - which is a wonderful accomplishment - gosh I hated that drug - it has worked against his seizures - but I think it has influenced his appetite and had other bad side effects. He was on the drug for over 2 years.

He will be heading back to Madison tomorrow and will have another 10 oxygen dives this week - then only 6 more dives will remain.

Tuesday, January 5, 2010

Brextin is all better!! We are back to do oxygen dives :-)

We went to see an ear/nose/throat specialist this morning and had wonderful news - it was exactly what was stated by the second person who just left a comment for us - it was granulation that had formed inside his inner ear - which got infected and caused it to burst- he is now on ear drops and we have been given the go ahead to complete the rest of his oxygen dives.

Once he got home yesterday and I saw how bloody his ear was - I was very concerned - but our prayers were answered and he is fine!!

Once again I will struggle on being away from him - I have never been separated more than 24 hours from him - Thank you for all of the prayers - they were answered!!

Monday, January 4, 2010

Brextin's coming home early! I am saddened!

I got a phone call today at 3:00 indicating that Brextin would be coming home tonight and not finishing any more oxygen dives this week - he has blood again draining from his ear - and the doctor thinks his tube might have ruptured - not his ear drum - but the tube itself - we have an appointment tomorrow at 9:00 with our local doctor and then we might have to see an ear/nose/throat specialist -

I tell you - we just can not get a break - He is not showing any signs of discomfort which is a positive thing - we will just need to wait and see - at tomorrow's appointment -

Please pray that everything will work out - If we do not continue the dives this month - we will probably need to wait until June, July or August.

Sunday, January 3, 2010

This will be a challenge!!

I have NEVER been away from Brextin for more than 24 hours and now I will be away from him until Friday- (6 days) I just did not want him to leave today - I know he is in good hands with my relative while receiving hyperbaric oxygen treatments- it is just that I am his care taker 80% of the time - and I will feel empty while he is gone.

We both attended church today and prayed and prayed and prayed some more in hopes of further development along with safe travels - it is tough knowing we are parents of a two and half year old - and basically the only thing he is capable of doing is sitting up -

He did the other day remove his winter hat three times off the top of his head - it brought tears to my eyes - seeing him simply take off his hat - it is the littlest accomplishments that make me smile ear to ear - I can only simply hope and pray that we will see more accomplishments down the road!