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Caleb is not doing so hot, prayers please!

Posted by on Apr. 16, 2012 at 12:30 AM
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 So this last week as been very difficult.  He has had two episodes where he has stopped breathing long enough to turn blue.  Once while awake and the other while asleep.  he is having multiple seizures every day and this is after we increased his meds two weeks ago.  He had a bad convulsive seizure last night that woke him up.  He woke up irritable, and I thought he just did not like the style of his new cannula, so tried to rearrange things and he settled a little, then he had a high pitched scream and yelled out No No!  and went into a full body convulsive seizure.  He started experiencing, or at least started to be able to express that he is experiencing auras before his big seizures, which is what I think was happening and he is scared.  Still waiting for a call back from his neuro.  The nurse felt it was an urgent message, yet I still have not heard.  We are worried that his condition is worsening and afraid of what more he is going to have to go through in order to figure this out.  He and his twin will be 2 on Thursday.  I just hope he can have a happy birthday without any issues.  Thanks for listening,

Lainie

Mom to 3 awesome kids, whose son's very special brain forgets to tell him to Just Keep Breathing.
by on Apr. 16, 2012 at 12:30 AM
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Replies (1-10):
Pukalani79
by on Apr. 16, 2012 at 10:39 AM

 Lainie I'm so sorry!  How scary!  I'll definately be praying for him, poor guy! ((HUGS))

Evana
by Member on Apr. 16, 2012 at 10:41 PM

Oh wow! I hope he gets better and this gets figured out.  I always hate it when Jaycee's sick on her birthday because there is too much stress when you should be happy.  I feel for you!

chelseamcnorman
by on Apr. 17, 2012 at 10:32 AM

I will say a prayer for your son right now. I cannot imagine what you and your family must be going through.

Your doctor may not be returning your call yet, because he/she is also simply confused about what is happening to your son and does not want to call you back without some answers. One of my daugther's specialists even admitted to me that the medical community simply does not know much about my daughter's condition (autism). He told me that I, as her mother, probably know more about Ruthie's particular case, than anyone else involved. This is why I try to do my own research before appointments; I usually come armed with a list of questions. 

I encourage you to set aside an hour or two (when you get a chance!) and do some crunch-time research on Caleb's condition. My favorite internet search engine, Ixquick.com, has been indispensible in solving my own daughter's "medical mysteries." Start by asking yourself some questions. In which part of the brain is the breathing reflex located? Could this be at all related to night terrors or other sleep disorders? Could his medication be triggering anything? 

I know you are feeling scared and helpless. That is a battle I fight with myself every day. Just remember: no doctor is going to be as motivated to solve Caleb's mystery as you are. 

Xat
by Member on Apr. 17, 2012 at 10:38 AM
I'm sorry for all your little one is going through. I will say a prayer right now for him.
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2Cor915
by on Apr. 17, 2012 at 12:37 PM

 

Quoting chelseamcnorman:

I will say a prayer for your son right now. I cannot imagine what you and your family must be going through.

Your doctor may not be returning your call yet, because he/she is also simply confused about what is happening to your son and does not want to call you back without some answers. One of my daugther's specialists even admitted to me that the medical community simply does not know much about my daughter's condition (autism). He told me that I, as her mother, probably know more about Ruthie's particular case, than anyone else involved. This is why I try to do my own research before appointments; I usually come armed with a list of questions. 

I encourage you to set aside an hour or two (when you get a chance!) and do some crunch-time research on Caleb's condition. My favorite internet search engine, Ixquick.com, has been indispensible in solving my own daughter's "medical mysteries." Start by asking yourself some questions. In which part of the brain is the breathing reflex located? Could this be at all related to night terrors or other sleep disorders? Could his medication be triggering anything? 

I know you are feeling scared and helpless. That is a battle I fight with myself every day. Just remember: no doctor is going to be as motivated to solve Caleb's mystery as you are. 

 Thank you so much for the link and the advice.  We often hear that "It is just another one of Caleb's mysteries!"  I have spent countless hours researching on the internet and signing up for medical reports and so on.  His condition is soooo rare, it only affects 0.40% of the whole population, that he himself becomes a labratory experiment.  I will not keep putting him through tests just so the doctors can treat him like a lab rat.  I know this sounds harsh but I feel so many needless things have been done, that we are now very particular about the test and they have to have a good substantial reason for it rather than "Lets give this a try"  which we have heard too many times.  His doc called back this morning and has increased his seizure meds again.  We are going in on Friday to talk to her and for her to evaluate him in person.  We will see what their ideas are.  It is truly a love/hate relationship with the medical community.  I am sure you understand! :)

Mom to 3 awesome kids, whose son's very special brain forgets to tell him to Just Keep Breathing.
2Cor915
by on Apr. 17, 2012 at 12:39 PM
1 mom liked this

 Thank you everyone for your prayers and support.  i will keep you posted on how the appt on Firday goes.  He is doing well today so far, so we will see.  Over a week of constant seizure activity does takes a toll on a little guy!

yezay
by New Member on Apr. 17, 2012 at 12:40 PM


Quoting Xat:

I'm sorry for all your little one is going through. I will say a prayer right now for him.
Posted on CafeMom Mobile
chelseamcnorman
by on Apr. 18, 2012 at 6:31 PM
1 mom liked this


Quoting 2Cor915:

 

Quoting chelseamcnorman:

I will say a prayer for your son right now. I cannot imagine what you and your family must be going through.

Your doctor may not be returning your call yet, because he/she is also simply confused about what is happening to your son and does not want to call you back without some answers. One of my daugther's specialists even admitted to me that the medical community simply does not know much about my daughter's condition (autism). He told me that I, as her mother, probably know more about Ruthie's particular case, than anyone else involved. This is why I try to do my own research before appointments; I usually come armed with a list of questions. 

I encourage you to set aside an hour or two (when you get a chance!) and do some crunch-time research on Caleb's condition. My favorite internet search engine, Ixquick.com, has been indispensible in solving my own daughter's "medical mysteries." Start by asking yourself some questions. In which part of the brain is the breathing reflex located? Could this be at all related to night terrors or other sleep disorders? Could his medication be triggering anything? 

I know you are feeling scared and helpless. That is a battle I fight with myself every day. Just remember: no doctor is going to be as motivated to solve Caleb's mystery as you are. 

 Thank you so much for the link and the advice.  We often hear that "It is just another one of Caleb's mysteries!"  I have spent countless hours researching on the internet and signing up for medical reports and so on.  His condition is soooo rare, it only affects 0.40% of the whole population, that he himself becomes a labratory experiment.  I will not keep putting him through tests just so the doctors can treat him like a lab rat.  I know this sounds harsh but I feel so many needless things have been done, that we are now very particular about the test and they have to have a good substantial reason for it rather than "Lets give this a try"  which we have heard too many times.  His doc called back this morning and has increased his seizure meds again.  We are going in on Friday to talk to her and for her to evaluate him in person.  We will see what their ideas are.  It is truly a love/hate relationship with the medical community.  I am sure you understand! :)

How frustrating (understatement!) to have a child with a such a rare (and life-threatening) condition! I have not heard of his condition until I met you, and now that I have, I know how lucky I am to not live with the persistent fear you must face. 

Autism is anything BUT rare; in fact, it has reached "epidemic" proportions just in the last decade or two! I'm blessed that my child was diagnosed last year (as opposed to many moms whose children were diagnosed in the early 90's), because so much more has been discovered regarding causes and treatments. Unfortunately, autism is still mostly a mystery to the medical community. So I can somewhat relate. 

Perhaps one hidden blessing that you and I both share (that moms with "normal" children may seldom experience), is that we do not take the "little things" for granted. Every day that your son can breathe, is a day for which you are consciously grateful. Just iike every time my daughter hugs me, I have to fight tears of joy!

bettyboop55148
by on Apr. 18, 2012 at 6:36 PM

aww that is so sad he has to go through this i am praying for him ♥

sassymomntx1961
by Group Admin on Apr. 18, 2012 at 11:03 PM
1 mom liked this

prayinggroup hug

GOD first ppl next things last you cant go wrong and w/ GOD and JESUS around you,you will be a a triple strand rope

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