Chiari Online Support Group

Advice please. We're trying to get a serious doctor


#1

I’m hoping to find something​to either tell me I’m making a bigger deal than I should, or that I’m not insane for stressing. In March, my 17 month old had an MRI (he was 15 months then) that came back a mild malformation. The doctor called me 20 minutes later, while I was driving my son home from his MRI, and told me over the phone. I was a wreck. My husband, his father, went through this at the same age and had to have surgery. The thing is, he made it sound microscopic, that it was nothing to stress about. Of course, I did stress. I read and read and read. I noticed these quirks he has, others are experiencing as symptoms. Excessive thirst, tantrums, seizures, banging his head on the ground, etc. Well, his neurologist suggested Keppra for his seizures. It was so bad. It enhanced his temperament issues, he lost his appetite, and still had seizures. His Dr also told me, he will either grow out of it or he won’t, that we would just monitor it.

I decided to take him off the Keppra, his attitude and appetite went back to the way it was, but his seizures were worse. He started shaking harder and would drop things.

I went to a genetics councilor today because I’m 24 weeks pregnant. They spent more time talking with me about my son’s MRI results than my daughter’s chances of having this (which they told me was 50/50). She explained he had an 11mm malformation and it was type 1 and there was note of fluid build up, that it was minimal though. She also said him banging his head on her floor was a sign of having a headache.

I went to his Dr appointment later that day and told him I took him off his medicine and he told me if I refused to treat the seizures, then there was nothing he could do for us. I asked him what about monitoring his malformation, he said that it didn’t present with any symptoms, so he is fine. I am not going to lie, momma bear syndrome kicked in. I could not believe he was telling me my child, unable to speak for himself, wasn’t having any symptoms. I asked about headaches, and him banging his head. He told me that’s not a sign. I reminded him he started the same way as his father, with seizures and they’re getting worse. He has a small bubble on the right side of the back of his head that’s soft. He didn’t agree with me on any of this. So I asked for a second opinion.

He sent a referral to a subpar office, I called to verify if they specialized in it, they said no. So I called Duke medical University, where my husband was treated, and they have 50 pediatric neurosurgeons who specialize in chiari malformation. I called his Dr office back and told them I needed to go to Duke, this was my child and I wanted the best. They’re supposed to call me tomorrow to see if he approves it.

Am I crazy? I feel like he has these symptoms. He went from being a happy normal child to moody, mean, and I’ll more than he isn’t. I also feel like he shouldn’t have been so nonschalant about it all. I’m so stressed out. I know 11mm is small, almost half an inch, but to me it feels like a mile. Any advice? Sorry for the book.


#2

I can’t comment on the chiari. But I am going to say/do something I rarely do. RUN to Duke camp out if you have to. I would be VERY concerned about the Keppra. Generally it’s not given under 48 mos. What you are describing are very common side effects from Keppra. There are all kinds of reasons for siezures, but growing out of them is not one of them. You sure need a second opinion. Actually you need a better first opinion. Duke is excellent. Please contact me if you need some help with a referral, I know some persuasive folks.


#3

Thank you!! I could just cry, I’m so upset. I didn’t want him on medicine to start with because I felt like his symptoms would subside and they’d forget about him. Which I guess is what his plan was. I just wish I didn’t need his approval for a referral. They did wonderful with my husband at Duke, he was 2. I just feel like he needs the best, I want someone who is without a doubt the best. Being pregnant on top of this is enough to drive me insane.


#4

I mentioned this in another thread but you can get a second opinion on line from a pediatric specialist at http://eclevelandclinic.org/displayPhysician?fileid=843943&physicianId=71879&product= Violette Recinos M.D. is great. Its not free but may well be worth it if you need some reassurance. Also Dr. Trumble who drops by here is great. As you build your evidence, the primary is far less reluctant to to give you the referral you need.

BTW the pregnancy issue will pass in a few months. Its the worst at 6 to 10 weeks. Then again at the end of the third trimester. I’m not being a smart ass. but there are better times during a pregnancy to make big decisions than others, Hang in there!!!


#5

We’re almost in the home stretch, I have 3 months to go this pregnancy. We’re on our 4th, so this is cake for me other than the hormones. I did call his primary this morning, I got my referral thankfully. They sent it this morning. Hopefully we will get some solid information and a better game plan.


#6

Congrats!!! Glad a plan is coming together. Clearly you are a great Mom.

I understand hormones more than you know… At present I live with 5 females, not to mention the cats who are also females. I used to commiserate with my faithful dog the only other male in the house. Apparently he stepped out of line while i was out of town once and they had him neutered. I tread very lightly.

TJ


#7

Hah! I needed that laugh, poor doggy! We have our first appointment may 27 with Dr fuchs at Duke. He is the one who operated on my husband. He specifically specializes in chiari so I’m thrilled. His reviews are wonderful too. I was shocked his neurologist, well ex neurologist, agreed to send him!


#8

I have a child with a seizure disorder and Keppra is not typcially prescribed for such a young child. Tegratol is more common. There are other much better medicines out there for children that are under 5. Keppra has known side effects, such as behavior issues, loss of appetite, etc. Definitely fight until you get in to a Dr. at Duke. There could be other things going on beside the Chiari.


#9

Yeah, if Im not mistaken that was what my husband was on. We go the 26th, instead of the 27th. They actually have a study going on where if you have more than one family member they want participants to try and prove it is genetics causing some of it.