Cranberry or Pineapple??

[Jrsy Boy]

Cristi and Jrsy, we have sun down here. I hear you are foggy and overcast. Happpy to be in Monument. LOL

Just came back in from lunch and it isn't even up to 45 with heavy cloud cover. It is just a miserable day outside so if there is one bright side to look at about being where you are and why, let that be it.

 

[ImMarcik]

Sandy & Heidi i am so glad y'all posted. I was thinking about Joey. How, Heidi has said it was so hard for her to watch her sister go through that. I am glad she is doing good.

I don't feel good today I just can't wait to get home and take a nap.

 

[jiminyC_fan]

He's HOME! That whole family is napping and the rest of us ran to Walmart to pick up his new meds and of course some adult beverages. It was a huge cry fest when they arrived home.

Jrsy, looks like you are pushing your clouds down this way. Please keep them up there. We were enjoying the warmth of the sun!

Feel better Marcie!

 

[ImMarcik]

He's HOME! That whole family is napping and the rest of us ran to Walmart to pick up his new meds and of course some adult beverages. It was a huge cry fest when they arrived home.

Jrsy, looks like you are pushing your clouds down this way. Please keep them up there. We were enjoying the warmth of the sun!

Feel better Marcie!

Yay time to celebrate. I'm glad he's home.

Thank you, I don't know what's wrong, hope I'm not getting sick. I've gotten 7 to 8 hours of sleep a night all week, yet I've been fighting sleep all day and I feel achey and like I just want to be in pjs under the covers.

 

[jiminyC_fan]

Marcie, how are you feeling? Sure sounds like you are coming down with something.

Tyler is still having seizures but not as many. It will just take time. It is so hard to see his speech so slurred and have practically zero balance. That all should go away too. He is just so full of drugs right now.

It is foggy, rainy and cold. Some dusting of snow is expected tonight.\

Had fun with Heidi and Chris last night. They decided to stay down here at the campground to spend more time with Tyler . Once he went to bed we came back to our 5th wheel and played a game and drank. It sure helped take away the blues.

 

[Pooh_Friend#1]

Marcie - I hope you are feeling better. I am starting to feel all achy too. I woke up from a nap today and just feel miserable and all my joints and muscles ache. I think my body is finally relaxing now that Tyler is home. Thanks for all the hugs.

 

[jiminyC_fan]

Oh no Heidi. That isn't good. I kissed you!

 

[Jsme]

I hope you guys are not getting the cold I had a few weeks ago. It really was awful.

Sandy and Heidi I am thinking of you and praying for you.

 

[ImMarcik]

I went to Walgreens after work and bought some Mucinex and went to bed when I got home. I guess I've had a bit of sinus lately and didn't even notice I was getting sick. I stayed in bed for about 4 hours and then got up to watch a movie with my friends. They came over to check on me. I took more. Then I got a good nights sleep and I feel a bit better. Just taking it easy this weekend, lots of water and rest. I did clean up my house though.

Aerial's birthday is next Sunday. That means Alex is having a birthday too. She will be 15. I bought her a game for her Nintendo DS and I am going to see if she wants her bff to spend the night Saturday night and then take them to lunch and get her a cake on Sunday.

Heidi, I'm sorry you aren't feeling well. I am sure the last few days have been very stressful.

 

[Pooh_Friend#1]

My mom just told me what type of seizure Tyler was diagnosed with. He was diagnosed with Doose Syndrom. I am just trying to research it now. Reading peoples story about Doose Syndrom and the Ketogenic Diet and how well it worked for them. I am hoping this could be a possible thing for Tyler if the meds don't work and that the Children's hospital has this program because this diet has to be closely monitored by a doctor and dietician.

 

[Jsme]

OK Heidi you have me interested...this is something I read. Did you read this one?

Myoclonic-Astatic Epilepsy (MAE), or Doose Syndrome, is an epilepsy syndrome of early childhood that is often resistant to medication. For this reason, it can be difficult to treat. MAE is an idiopathic generalized epilepsy, meaning that there is no known cause for the seizures (idiopathic) and the seizures originate from all over the brain (generalized) as opposed to coming from one focal area. Onset of MAE occurs commonly in the first five years of life, with the mean age being three. Statistics show that it usually affects children who have previously developed normally, and boys are twice as likely as girls to develop MAE. In some cases, other family members (immediate or extended) may also have seizures.

http://www.doosesyndrome.com/
There's more about this on the link

 

[Jsme]

A support group

http://groups.msn.com/doosesyndrome

 

[Jsme]

I have to say the ketogenic diet looks promising. I read on one site that you need to let the child help in the prep work of his meals. Also to present the food on a salad plate so it will look like more food. I think it also said to help in the beginning you might need to split the meals so it appears that you are eating more.

I found this interesting

The ketogenic diet is not a new treatment. There is even a reference to fasting as a cure for fits in the Bible. Other early attempts at a diet for epilepsy include salt restriction, protein restriction, acid-ash diets and dehydration

 

[jiminyC_fan]

OH MY GOSH Selena. I am so glad you posted the article about it. Ted and I were wondering how they knew that his seizures are the same as Stacey's. Once I read the term "myoclonic" that was the answer. They called it myoclonic seizures to us. Now I even feel better. Just knowing how we dealt with it and all our pep talks from the Doctors arre just flowing back into memory. I have to go back and read about the diet now. Wow, thanks!!!!!

Marcie, glad you are getting better. Mucinex seems to be a great "drug"!

 

[jiminyC_fan]

Man, I just can't believe that all the pieces to our puzzle is coming together all because you did that research Selena.

 

[jiminyC_fan]

That diet looks scary to me. I hope the meds will work and being it does state that it is genetic maybe the two different meds that Stacey used will help him. Just me, but I won't say anything to Stacey just in case that is the route they have to take.

 

[Jsme]

Man, I just can't believe that all the pieces to our puzzle is coming together all because you did that research Selena.

Oh Sweetie I did nothing. I only ran on what your daughter posted. I have been reading up since Heidi posted.

I wondered if they were the same as Stacey had as a child. I pray with this information it gives you hope.

I saw the fact that it tends to peak at 3-5 years of age. Maybe this is his peak and it will only get better.

Know you guys are in my thoughts and prayers

I have asked my cruising buddies to pray for your family. They are a wonderful group and I am sure you will be in their prayers.

 

[jiminyC_fan]

Know you guys are in my thoughts and prayers

I have asked my cruising buddies to pray for your family. They are a wonderful group and I am sure you will be in their prayers.

What would we all do without you?

And yes, Stacey was told yesterday that it is the same seizures as she had. I guess that is what gives me hope. I just couldn't figure out HOW they knew it was the same until the names came out tonight. She now has all of her records and carries them around with her and keeps a log of Tyler's as well. Believe it or not, they are in a three ring binder. I am so thankful that we kept it after all these years. Stacey started her seizures at 2 years and 9 months old.

 

[jiminyC_fan]

Another thing that Stacey is concerned about is Joey having to go through all this drama. Heidi let her know that she came out alright and Joey will too. It's kind of reassuring to Stacey for both of the kids.

 

[Jsme]

Another thing that Stacey is concerned about is Joey having to go through all this drama. Heidi let her know that she came out alright and Joey will too. It's kind of reassuring to Stacey for both of the kids.

I am struggling with words here. At least you have this reassurance. We never know why God puts us thru something so unfair. Virtual hug to you and another one to Heidi