Thursday, March 25, 2010

I called the neurologist yesterday and was able to have a good talk with another neurologist in her department. She said it was Ok that the medicine hasn't worked yet after two weeks. She said to give it at least four weeks. That made me feel a little bit better. I'm keeping her appointments with the neurologist and the ophtamologist she has now, but in the mean time I called CHOP and was able to get an appointment with an actual Neuro-Opthamologist. I'm looking for a second opinion for treatment. I looked up this Neuro-Opthamologist online and found out that he is an international EXPERT on Psuedotumor Cerebri. I'm 99% sure after we see him we will switch to him permanently. What more could you ask for then an international expert.Plus it would be nice to only have to deal with one doctor.

So we will see her current Neurologist on April 8th, The EXPERT Neuro-Opthamologist on April 14th and the current Opthamologist on April 27th.

I hate all of this waiting, but there is nothing else to do but wait and see if the medicine works.

Tuesday, March 23, 2010

There is a certain kind of pain a mother feels when they're told there is something wrong with their child or that their child is sick. It's a hurt that goes right to the heart and causes worry..extreme worry. It's not the kind of worry you have when your short on money or waiting for a call back for a job, etc. It's a worry and a hurt that goes right to the heart and causes your eyes to well up with tears every time you think. I'm afraid this is how I feel right now. We went to the opthamologist tonight and the swelling on Rylie's optic nerves hasn't gone down at all. The doctor said it looks the same as when she saw it two weeks ago. Maybe it will take a little longer for the medicine to work, or maybe they'll up her dose, or maybe we'll need a new treatment plan. The Opthamologist recommended seeing the Neurologist as soon as next week.

The thing is....Rylie is not in any pain. The problem is that she has Psuedotumor Cerebri and it can cause vision loss. Right now her vision seems to be just fine, but I don't know what effect this could eventually have on her.

All I can do is trust God and work with the doctors to get this resolved. I don't like this feeling. I feel like I'm back seven years ago and getting a Down syndrome diagnosis. I'll have to use that experience from seven years ago to remind myself everything will be fine.

Friday, March 19, 2010

Yesterday Rylie had her MRI. This morning I called the neurologist for the results because I knew she had them according to radiology. I was getting anxious waiting for her call back, so I asked radiology to fax the results over to her pediatrician because I knew her pediatrician would get right back to me. And she did. She told me everything with her brain looked normal, but they saw fluid in her sinuses and noted that it might possibly be mastioditis. HUH? The ped told me I need to take her over to the ENT. Well Rylie was already at school and my car was in the shop, so I casually told the pediatrician I would take Rylie to the ENT next week, not realizing this could be something serious. The pediatrician told me...NO, I'm not asking you to get her over to the ENT now I'm telling you, then she told me to take a taxi if I had to. She said she might need IV antibiotics. So right away I went into panic mode! The pediatricians office made arrangements for me to see the ENT at 2:00 and that gave me some time to make arrangements. My friend Kim picked up Rylie from school and my mom was able to come up and watch Cesalie. Speaking of Cesalie, while I was in panic mode and making all these phone calls she went into Karlie's room, found a black Sharpie marker and decided to draw all over herself. She drew all over herself and because she loves cats so much, she decided to become one and drew whiskers on her face. Yeah, just what I needed.

After I finally calmed down and was waiting for my mom to come up, I went on line and googled Mastoiditis...and realized there was no way Rylie had this. Her hearing has been fine and her ears looked wonderful to me, she had no fever and has been doing great. So, after I read that I really started to calm down and wonder why the pediatrician was making such a big deal.

Meanwhile I was getting ready to get out the door and the Neurologist calls and says, Rylie's MRI was normal. I told her what the pediatrician told me about the Mastoiditis and she said anytime you do an MRI they will see some fluid in the sinuses, and she wasn't worry about it, but still go see the ENT in case.

So, we go to the ENT and the ENT said that the pediatrician overreacted. Rylie was fine. She just had a little bit of fluid in her ears and her tubes were now out. She got a hearing test and did pretty good, but we need to schedule her for ear tube surgery again.

Ok now back to the MRI. Because everything else with her brain has been ruled out that officially means she has Psuedotumor. They're not 100% percent why children get Psuedotumor, but they said it's common with Down syndrome. She is taking Diamox to deal with the Psuedotumor and the swelling on her optic nerves. Hopefully the medicine is working. We will find out when we see the Opthalmologist on Tuesday.

Besides the fact that Rylie had severe pain from her spinal tap last week, she has been fine. No nausea, vomiting or any other symptoms Psuedotumor can cause.

The pediatrician had me scared today. But thank God there was no mastioditis! I realize her ped had to take all precautions, but I think she should have consulted with an ENT and the neurologist before scaring me to death.

Friday, March 12, 2010


Rylie was sent to CHOP last night because she was in pain, and her pediatrician wanted them to do an MRI on her back.

While waiting in the ER her pain subsided quite a bit(ANSWERED PRAYER!!!!). The doctors checked her out and didn't feel that her pain warranted an MRI. They gave her some pain medication and sent her home. Apparently this pain in her back is normal for having had a spinal tap. It should resolve completely in a couple days.

So for now she will have an MRI for her eyes next week, and we'll go from there.

Thursday, March 11, 2010

Rylie is doing good right now. Prayers have been answered. Thanks everyone. I'll update when I know more.


Doctor said Rylie's back was swollen and the pain was radiating to her front. She'
s on her way to CHOP for an MRI on her back. I would appreciate prayers.

Some stuff going on with Rylie

On Tuesday Vince took Rylie to her annual eye exam. She sees the eye doctor each year for her Optic Nerve Hypoplasia and astigmatism. Right away the doctor notice that her optic nerves were swollen. That is very serious and she was sent right to the emergency room.

When we arrived at St. Chris's she had blood work which was normal and a catscan which was also normal. They wanted to send us to CHOP, but CHOP wanted St. Chris's to finish up with all of the neurological test before they sent her.

They gave her a spinal tap( that was a horrific experience for Rylie) Her levels were elevated. They then admitted her to St Chris's with an MRI ordered for the next day.

The next day we were told the MRI machine was broken. They wanted to transfer her to CHOP for an MRI, but CHOP was too backed up.

In the mean time she was seen by a neurologist.

All the doctors seem to agree that she has Pseudotumor Cerebri. They put her on medicine to treat it for the time being and discharged her. She is scheduled for an MRI next week at Abington hospital. The whole not being able to get an MRI thing was an ordeal!!! I called Abington myself to see if they did pediatric MRI's.

Today she is refusing to walk and seems to be pain. I'm worried that this might be from the spinal tap. She keeps saying her belly hurts(like it's sore or something). She seems fine otherwise. She is eating alittle and drinking and playing on the couch, she screams though when I make her get up to walk. I called the pediatrician and they said to bring her in. Vince is taking her over there right now as I write this. I'm also wondering if she might have a UTI, because she hasn't gone potty all day. Maybe that is why she is in pain???

I'll update later.