Wednesday, April 14, 2010

Can You Hear Me Now

I have a problem: I feel as if some of Matthew's doctors are not listening to me. This is the utmost irritating thing!!!

Here's the story~

Matthew has seizures. He has been on Phenobarbital for 9 or so months now. When we first brought Matthew home we did not notice any seizure activity. We thought we were witnessing a miracle. As time went on a few "startle" seizures began to make their appearance known in our daily routine. Matthew's neurologist Dr. M is adamant on him continuing Phenobarbital. We are putting our trust in him (praying continuously).

Last week we traveled to Cooks in Ft. Worth for Matthew's MRI and EEG. We received the results this week, and for the most part no news is good news. The MRI showed that Matthew has Sinus Disease. That is the only difference since the last MRI. The EEG showed multiple parts of the right side of his brain have seizure activity.

This week Matthew's seizures have become prime-time television attention getting. He is sucking in his bottom lip, kicking out his left leg repeatedly, and has nystagmus (continuous eye movement) that is more involved than before. For a mother, any change is terrifying.

So off to the doctor we go tomorrow. I fear Dr. T (pediatrician) will fire us as a patient once he sees my list of questions-I come prepared. We are going to be discussing the Ketogenic diet. If this is the plan of action Dr. T thinks will be most effective then we will soon be taking the plunge into the world of the G-Tube.

I am scared.

On a much happier note~Matthew turned the big ONE on Saturday. He celebrated with two amazing parties. He is blessed with so many people that love him, and for that we are thankful. I must admit, watching your child turn a year old is slightly heartbreaking. My baby is indeed growing up much too fast.

God has truly blessed us. This week has been scary and uplifting. I would like to share with my few readers something amazing. This week we were able to connect with a family that has been intertwined in Matthew's life. For privacy reasons I will not go into detail. Having the ability to connect with someone, even over the phone, that understands what you have gone through
~from the adoption journey to the diagnoses~ is just amazing. Thank you, E, for taking the time to ask about Matthew. It has truly meant so much to me to be able to connect with you.

If you would, please say a special pray for our sweet boy tonight.


And~~~~keep an eye out for a very special and exciting blog coming in just about two weeks!!!

5 comments:

  1. I am not a fan of doctor M, and he knows it. I am not bringing him down, because some people just LOVE him. Although, I did seek out a second opinion, and even tho he is in Plano, he is so worth the drive. We see Dr Riela 972-769-9000. Might be worth a second opinion. When we went the pheno was really doing nothing except putting Jude to sleep. When Jude started falling asleep we noticed even more seizures. Turns out Jude was having infantile spasms, and needed to be treated differently. So said dr tried Depakote, and it was our saving grace!!! Jude still has spasms but not near as many. Anyway, might be worth just seeing what he says. Never hurts to have two sets of eyes on someone.

    ReplyDelete
  2. Keto Diet doesn't have to mean tube feeds! Kendall started it at 14 months, and didn't get her g-button until long after...

    The KetoCal is kinda nasty but can be sweetened enough to somewhat resemble Pediasure! And there are tons of recipes for normal foods (just with lots of butter and cream:)

    Please let me know if I can help you at all!!

    ReplyDelete
  3. We are praying for Matthew and for all of you!!! Just remember that there are lots of treatment options (lots!!) and lots of doctors, and if your doctor won't listen to you or won't do what is best for Matthew, then you don't need him. And like your friend said, a second opinion is always a good idea. Surgery is a huge decision, especially for a treatment option that is not front line for treating IS. You are his Mommy... don't ever discount your "gut" feelings.
    It was wonderful for me to connect with you too. :)
    Big hugs and lots of prayers,
    E

    ReplyDelete
  4. Brandi....the one thing that I can say is Mommies usually know what is the best for thier child.....even when they get older they still feel that way......go with your gut know matter what anyone thinks.....keep talking and they will listen....sometimes you have to get loud but they will.....speaking from expeirence and from the nurse side of me......you are his advocate and that is what is the most important....trust your gut and God and things will be fine.....I love you and think you are doing a wonderful job.

    ReplyDelete
  5. Do not be fearful of the keto diet, feeding tubes or doctors.
    We have all three.
    The doctors...some that I have emails for I emails my questions to them ahead of time so that they know what I am going to ask and they are ready to discuss. Alway phrase the questions so that they are questioning the doctor's authority or expertise (they tend to not like that) but as a way to inform yourself and help you little one.
    We have had a g-tube and a g-j tube. While they are not fun. They are pretty easy and a great way to know exactly how much food they are getting.
    Keto diet...we have only been on it for almost two months and we have already seen a decrease in seizure! The pediatric doctor may only know so much about it so look for a neuro who specializes in it.

    And a very belated Happy Birthday!
    He is so precious and a wonderful gift.

    ReplyDelete