heard from Dr. Frim

[mikeysmom1995]

Hi Guys,

I got a call from Dr. Frim's nurse and she said that DS definitely has chiari with the 8mm herniation. Our PCP called me first and wondered if we had heard from Dr. Frim, and I said no, that I did not want to be a pest as he  does the reviews without charge. She said that over 4 weeks was a long time to wait so she called his office and had a good chat with Dr. Frim's nurse. She told our PCP how to treat Mikey, and to order a full spine MRI to rule out syrinx, and tethered cord.  After the MRI we need to call and schedule an appointment with Dr. Frim, so off to Chicago we go.
I can't say I am happy to hear the news, but at least we know now what we are dealing with. I think that it is hitting me all at once today as I am sittling hear crying like a  baby. It is so hard knowing that both of my darling boys have health conditions that they are going to have to deal with there whole life. I wish I could take it all away so they did not have this going on.
I am just going to pray that nothing shows up on the MRIs.
Thanks for letting me vent.
Barb :)

[*Stormy*]

Barb..

I'm happy to hear that you got some answers from the doctor even if it was something that you didn't want to hear.
The scheduler is right..you are amazing, I don't know how you keep on going while dealing with 2 children with this condition. I appreciate the saying "we just keep on keeping on" because it is so true, that is just what we have to do. I admire your strength and I wish the best of luck to you and your boys.

Carolyn

[mikeysmom1995]

Hi Guys,
thank you for all of your kind words. I have always, without fail, been able to get the support that I need to keep going right here with all of you.You are all a great blessing to me.
I know that God only gives you what you can handle, and even with their conditions, they are truely a blessing to us.
And yes you are right, we are on the right path, and have our PCP and a good Chiari specialist to help us through all of this. I guess we should feel lucky that we got this dx this quickly, as it seems that so many go through countless docs and much time to get a dx. I could not have done this with out all of your guidance.
When I was making DSs appointments today, the scheduler said to me that she doesn't know how we do it, with both boys having conditions, and I think that is when it hit me, that I never stop to think about it. I just answered to her "we just keep on keepin on". That is what we do, we try not to dwell on the negative and just keep going.
Again, thanks so much to all of you! you are truely wonderful friends. (((HUGS)))

Barb

[selmaS]

Hi Barb...I understand the release of crying and I am sure u had a lot u were carrying.....so let it go.
U have a good dr set to take care of ur DS, so know u r doing and getting him the best u can.He is lucky to have u as a mom and an advocate in this chiari  journey.

Wolf makes a good  point....take good care of urself so u r able to be there for ur 2 boys.

ANd know that ur family here will be sending prayers and good vibes~~~ for ur trip and DH's eval.

"selma"

[ChiariWolf]

I feel for you, we can only imagine how you must feel. As for crying, hey you cry your eyes out nothing wrong with that. There is a reason we all are born with tear glands.

However, perhaps this thought may make your life a little easier. Even though the pill is one of those big horsepills that almost choke the life out you.... knowing your son's dx give you the ammo to really help him as life goes on. If you didn't know what was wrong, can you imagine how you would feel as he gets older? especially if because you didn't know he was 'allowed' to participate in sports that made his condition worse. Now that would be an even more difficult place to be. Now at least when he displays symptoms you'll know he isn't crazy, he isn't nuts, he isn't just out for attention. Rather you'll be able to understand the need to turn down the lights, turn down the TV or ask guests to keep it down. As yes, hard for you to take-but as a parent this dx that none of want is the best thing that could have happened. Don't take that wrong, it's not a dx that anyone wants to hear. But the part of your heart that defends and protects your child needed to hear the truth.

In all of this, please, don't forget to take care of you! Sometimes as parents we can try to place blame when things happen to our children. All too often I see parents place the blame on themselves for their childs health problems. At times that may be warranted if they are presenting their child to known dangers. THIS is not one of those cases! Chiari as you know is not either yours or his fathers fault. Just love him as you would any other child of your womb.

Wolf

[shanmomof3]

Hi Barb! I know its hard but at least there is validation and you know the other dr was wrong. I'm sure dr. Frimm will be able to help your DS! I know its hard to watch your child suffer but he has good support and a great mom! (((HUGS))) Shannon

[rod44]

Hi Barb, I pray that things go well for you and your DS, it is hard to accept this DX but it is worse not knowing, now you can seek the appropriate treatment....be strong & be positive :)

Ray