[lab-64]

Good Morning, I posted yesterday in a different section but should have started here. Our daughter,Jessica, is 10 years old and was diagnosed with Pseudotumor in Nov.2010.I'm hoping to share information about the early symptoms we observed with our daughter as well as figuring out where we go from here! The first signs showed up during an eye exam over a year before her diagnosis(I work for two optometrists). Jessica had excellent vision but her right eye was not as good as her left. She didn't need glasses but we retested her after 6 months. Her vision worsened a little bit and she got glasses. Her vision in the right eye still not 20/20 and therefore Dr. had us recheck in 6 months. The summer of 2010 her prescription changed a little more and still the right eye not as clear. Jessica's vision was not terrible without glasses but still the right eye could not be corrected to 20/20 and Doctor was now concerned and wanted to see her in 6 months. Here's when the fun began.
LISTEN to your children or you will miss signs. For a period of about a month,Jessica would wake up some mornings sick to her stomach, other mornings she would tell me she had shooting pains in her legs,or arms. Some days she would have congestion like the beginning of a cold and her ear would hurt back by her mastoid bone and down her neck. Her primary doctor treated her with antibiotics but it did not get better. I questioned whether she just didn't want to go to school. THEN, she told me the bones hurt where her eyebrows were and that her teacher moved her seat 2 spaces and she couldn't see the board. I scheduled her for an eye exam and she wa seeing 20/200 in the right eye. She could only see through parts of her eye, and white objects looked red. Overnight, it moved to her left eye and she was walking around with a bucket. Thank God for the Doctors I worked for her dilated her pupils and then called a neurologist and made an emergency appointment. If I could make one recommendation it would be this,if your gut is telling you that something is wrong, trust your instincts and pursue and answer with every means neccesary. So Jessica has had two lumbar puncture in 6 months and ready for her third. She has missed an enormous amount of school but has managed to make the honor roll and will start 5th grade nest year. Where do we go from here? There doesn't seem to be and end to this situation and how discourageing to feel helpless and not be able to help your child. Especially when the medication depletes her potassium levels and her legs hurt so badly. Has anyone heard of surgery other that the shunt? Her Neuro said there is something else where they drill holes in that section of the skull where the fluid flows to help with drainage. This is instead of ashunt. Whew, thisis a long post! Sorry.

Lisa

[Abbie]

Hello Lisa
and
WELCOME to NeuroTalk!!

I see you have found your way to our Hydrocephalus Forum. This a great place to start, however, please note the Hydro forum is not always a busy place...

I wish I had some answers for you but unfortunately I do not... Hopefully someone will come along who will be more helpful than I.

Please feel free to roam around and join in anywhere!
If you have any questions, concerns, or need any assistance in finding your way around... please don't hesitate to ask.... someone will always be around shortly to help in any way that we can.

I look forward to seeing you around the board.

Abbie

[MelodyL]

Hi Hon.

First of all, please let me give you a hug. You don't know me, My name is Melody and I read your post. You and your daughter are lucky to have each other. She's been through so much already but thank god she has you beside her.

You have been given the correct forum. You will find others who have similar situations and you will be given good information.

I have never walked in your shoes but I just wanted to let you know that your post touched me and you and your daughter will be in my prayers this evening.

Best of luck

Melody

[Darlene]

Lisa & Jessica,

Happy to see you have come to be with us. Just let us know if we can be of any help. There are great and caring friends here to assist you. Our shoulders are here for support in many ways. Please keep us up to date.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[lab-64]

Thanks for well wishes and prayers. Jessica went to the neuro this past week (she's only been to school 2 times in the last 2 weeks). He added tow moremedications, one that works like the diamox, which she is already on 1,000mg a day, and another for nausea. She's slept wll for 2 nights! If new meds or potassium keeps dropping then they'll achedule another lumbar puncture. I've come to the realization that she will probably have this for a very long time but I guess the best thing is she hasn't lost all of her vision, she at least see's 20/50 with glasses. I am thankful for that. If anyone hears of anything new for pediatrics, pass it along, I'll do the same.

God Bless,

Lisa