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 Post subject: My son is sick!
PostPosted: Sun Dec 28, 2008 10:52 pm 
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My son is 5 and suffered a seizure this weekend. He has Epilepsy but they are complex partial seizures, staring spells, defecating on him self, sleepwalking. He has been on Trileptal for almost a year and when his seizures get worse his doc only ups his dose and does not change it.

Just a recap: he has ADHD, ODD, Epilepsy, cyst on his brain, chronic headaches, light sensitivity, sound sensitivity, some joint and muscle pain and severely impulsive. He has been on the Daytrana patch for the ADHD and has been working ok, we upped his dose twice but i did not up it to 20mg yet. I was waiting till Friday.

I brought him to the ER on Fri b/c he had been acting strange for about a week. He has been sleeping 12 to 15 hours a night. Fri he woke up at 2pm and was dizzy, running into the walls, couldn't walk straight, his eyes were rolling in his head, his speech was slurred, he was twitching and he passed out while drinking his juice after eating 3 pieces of chocolate. Then i decided ok I'm gonna bring him to Children's Hospital. While I was getting ready he was laying on his floor in his room talking to me then he just passed out, he did this 4 times.

Of course at the ER his cat scan of his brain showed no stroke and the cyst was still the same. They sent me home. I called his Pediatrician on Sat and he's going to get a referral for him to see a neurologist, he sees a Nurse Practitioner now and shes not helping. Well when he woke up on Sat he had a rash all over his chin and sores in his mouth and red dots, probably viral herpangina, (sp) no fever though.

He has been tested on ELISA for Lyme and it was negative. So his Ped says he does not have it. I'm going to order the IGeneX test tomorrow and his doc said he will sign off on it. He now know there's more to this picture.

He has an appt with his Ped on Tues and hopefully with a Neuro this week. His Ped said to take him off the patch for now and only give him his seizure meds. He is completely out of control when he is not on his meds, but we will manage.

I hate to say it but I hope his Lyme test comes back Positive or shows something cuz then he will get treated and hopefully be cured of all this and not have to live with ADHD, ODD and Epilepsy his whole life.

Could everyone please just keep him in your prayers and that God just gives us the correct dx and answers.

Thankx
God Bless
:prayer: :prayer: :prayer: :prayer: :prayer:

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Krissy


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 Post subject: Re: My son is sick!
PostPosted: Sun Dec 28, 2008 11:47 pm 
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Krissy,
I am so sorry your son is going through this. You are WISE to get the Igenex test. Remember if it does come back positive, I always hear this - kids get well.

I have a feeling it will be positive...keep us updated please.

Prayers,
Dana

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 Post subject: Re: My son is sick!
PostPosted: Mon Dec 29, 2008 6:54 am 
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Krissy honey, I know we've talked on the phone about this, just remember you are in my prayers, as is your family sweetheart. I'm so sorry you're going thru this, you've been thru so much already.

much love and many prayers,
jaime

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"something good WILL happen to me today"

(Isaiah 53:5 NKJV) But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.


Any advice given by me, is just that, advice. I am not a medical doctor, and I suggest you talk to your doctor about any concerns.


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 Post subject: Re: My son is sick!
PostPosted: Mon Dec 29, 2008 7:21 am 
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Don't give up on your search i went to 30 docs before i woke up and went to a LLMD she did a pcr test which was positive plus a spect scan was positive for Lyme. now they have new test peptide 6 or something it's supposed to be the best one of all. Most docs don't have a clue about Lyme so keep trying to connect the dots, if he has Lyme it's only going to get worse without treatment, so don't let one or two or ten docs convince you otherwise.

Dr. Jones from ct is a expert with children too bad they are trying to shut Him down. It really makes you wonder what is really going on with this Disease all His kids are getting better and they are trying to shut him down? Bizarre isn't it?


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 Post subject: Re: My son is sick!
PostPosted: Mon Dec 29, 2008 7:59 am 
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Johnny, did your Dr. want to do more than one PCR test? My Dr. wants me to do twenty of them!!! Thru the next couple of months. To expensive for me. I did do one and it was negative. Said no to the rest so far. He said it was like trying to catch a ping-pong ball in a swimming pool with a cup, with one dip.!? Don't believe I've heard of the peptide 6 one yet. Anything better sounds good to me! Gina


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 Post subject: Re: My son is sick!
PostPosted: Mon Dec 29, 2008 8:48 am 
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Thank you all so much for the prayers. He goes to the doc tomorrow and we will go from there.

:thx:
Krissy

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 Post subject: Re: My son is sick!
PostPosted: Mon Dec 29, 2008 10:07 am 
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No ticked, I was positive right away with first pcr test and spect scan was consistent with Lyme Damage. They can treat you if you have the symptoms of Lyme without the positive test but you have to have a Lyme doc regular docs won't help you without a positive test.
In the beginning i was lucky to have clinic doc that was treating me without a positive test because he felt sorry for me, I was suffering real bad in the beginning with this Disease.

Peace Johnny


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 Post subject: Re: My son is sick!
PostPosted: Mon Dec 29, 2008 11:43 pm 
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Krissy,

I will be praying for your son each day. I am very sorry that he is suffering so. Very sorry. You need to know that you have our prayers and loving support as you raise this little guy for the Lord. You are his hero!

I hope the appointment goes well, is helpful to guiding what you need for him and that the test can be drawn/run and give you additional peace in knowing, whatever the outcome it.

Please take care of yourself. We know it is alot of energy both in the physical/emotional aspect but also on your heart.

You must be a wonderful mommy!
Blessings,
Diana

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He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. Wait for the LORD; be strong and take heart and wait for the LORD. Fear not, for I have redeemed you; I have called you by name; you are mine... When you pass through the waters, I will be with you; the waves will not overcome you...For I am the LORD, your God, the Holy One of Israel, your Savior www.stylebyheatherrose.com


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 Post subject: Re: My son is sick!
PostPosted: Tue Dec 30, 2008 8:16 pm 
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Update:

WE went to my sons Pediatrician today and i talked to his Neurologist. We came to the conclusion that the past week he has been acting weird. Well during school he gets his seziure meds at 8 am and at 8 pm, he also gets his Daytrana patch put on at 8 am also. Since he has been on Christmas vacation i have been to leanuite on him. He has been going to bed late and waking up late, so his med times are all thrown off.

I did not know this but was told today by his Neuro that the Daytrana patch (for ADHD) can cause seizures if you don't take your seizure meds at the same time everyday.

CRAP!!!!!!!!!!! This is all my fault, i could have prevented this by just being strict. I thought i would just try and give him a break from waking up early. Well know i know. Tomorrow we are back on track.
I ordered the IDgeneX test and will be here later this week and i will get his blood drawn and send it off next week.

Thank you all for the prayers. I just wish i could have realized the importance of him taking his meds at the exact time everyday. I guess when i don't take my meds on time i feel like crap, same thing. We also upped his seizure meds to 2 tsp twice a day and he will go up on his Daytrana patch Friday.
Please pray he does ok. :prayer:

Blesses to you all.
Krissy
:angel2:

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 Post subject: Re: My son is sick!
PostPosted: Tue Dec 30, 2008 8:27 pm 
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Hi Krissy,

I'm really sorry that you and your son are going through so much. You know Krissy, we just cannot know eveything. What we experience is the ongoing'ness of our childrens' suffering and to offer a brief holiday or relax fm the sked. crosses everyone's mind and plagues our hearts quite often.

You simply did not know of the contraindication regarding the patch and you should have been informed given that your doctors know the seizure history your son goes through. Its not your fault. Even considering the comment you made where you feel worse when you are off sked doesn't change the fact that you do get tired of the protocol and sometimes just need a break or to slide.

If this had not happened, you would not have tuned in, taken care of your son and now be in the know. I think you are doing a terrific job of watching over and taking care. We all have times of regret through this journey. There's simply so much to learn, absorb, manage, accept and carry. The Lord guided you in a way that you are now informed and will be an even GREATER advocate for your son!

You will also be a vessel for Christ and the benefit of others through this long suffering, Krissy. You already are.

Don't be hard on yourself. Any of us getting to know you can see that you are a wonderful mommy!

blessings,
sojourner

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He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. Wait for the LORD; be strong and take heart and wait for the LORD. Fear not, for I have redeemed you; I have called you by name; you are mine... When you pass through the waters, I will be with you; the waves will not overcome you...For I am the LORD, your God, the Holy One of Israel, your Savior www.stylebyheatherrose.com


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 Post subject: Re: My son is sick!
PostPosted: Wed Dec 31, 2008 11:26 pm 
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He's in my prayers.

Early 2008/late 2007 when I became very ill out of no where, a part of me was kind of hoping it was lyme so that I would have an answer to the mystery and be able to treat it. It ended up being Lyme and I'm much better now and deep into treatment at this point. A part of me wants to hope the same thing for you son, that it IS lyme so it can be destroyed and he doesn't have to deal with it. But of course, another part of me hopes it's not since it can be such a brutal thing to experience. Either way I'm praying for healing and restoration for your son Krissy. Keep us updated! :)

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"...I am the LORD who heals you." - Exodus 15:26


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