Update-plz pray for our son..

Update-plz pray for our son.. Well, its been over 2 weeks of worrying, praying, and hoping that everything will be ok with our son and tonight we found out that it will. James is 12 and his body makes too much spinal fluid. They put him on some meds and said not to put him on a strict diet but help him make good choices and watch his portions. Thank u Lord...Thank u all for your prayers and support.. Hugs Angela I am so happy about James, but just found out some sad news about a friend and fellow OH member. Carolyn "Sunni" Delph...I know her friend Jeannie has been keeping us posted about Sunni and she just Instant messaged me and said they were sending Sunni home, her kidneys have failed and it won't be long...Please keep her, her family, friends in your prayers. Sunni has been a great friend to me and she is a sweet, wonderful person...This is heartbreaking....

Hi Angela, I am truly happy for your son, but you and your family will be kept in my prayers. I am sorry to hear about Sunni. Her family has my prayers and support too. Keep us posted on all this. In God's hands, Kathy

Thank u Kathy...

I'm glad to hear you got some answers. Do you know what meds they put him on? Some of the meds used for Intracranial Hypertension have some minor side effects that can be easily taken care of. example: I take Acetazolamide (generic for Diamox) and the most common side effect is tingling in the hands, feet and lips. This can be controlled by taking vitamin C with the medication. This medication also makes anything carbonated taste like metal. Not a pleasant thing at all! Be aware too that some of these meds can put him at increased risk for kidney stones so he really needs to keep his fluid intake up. Sorry to hear about Sunni. I haven't been on the boards that long but I do recognize her name from posts I have read. I will keep her as well as her family and friends in my prayers. Susan

Hi Susan, they put him on Diamox. Does that have a generic? We are the primary insurance for him and his mom said they didn't make a generic for that. She was complaining about the copay but she lies so much that we can't believe her most of the time. But that is what they put him on and thanks for the vitamin c tip. I will remember that and tell her if he starts having the problem... Sunni passed away a couple of days ago... She was so young and such a wonderful person...I know God has His reasons, it just doesn't make it any easier. Hugs Angela

Yes, Diamox does have a generic - Acetazolamide. That is what I've taken for the past 4 years. This is the medication that makes carbonated beverages taste nasty, like metal. Also, if he starts having the tingling in his hands, feet, and/or lips have him drink 1/2 cup of orange juice with each dose of medicine or he can take 500mg of vitamin C with each dose. The tingling can get pretty painful if you don't take the vitamin C. Other than these side effects, the medication has worked wonders for me. I have my life back. The horrible headaches are gone, my eyesight has improved, the swelling of my optic nerves has gotten better, I no longer have the memory problems or confused thinking. My family was afraid I was experiencing early onset alzheimers it was so bad. I pray the medication gives your son the same relief. I am so sorry to hear about Sunni. I know she will be missed by all who loved her. HUGS Susan

Thanks Susan, we hope it helps him too. I will make sure I pass along the info about the vitamin c or orange juice. I guess she was just trying to squeeze a few more dollars out of us, its sad that she has to be that way. Oh well. At least James will be ok. I hope this helps him with the headaches as well and the pressure. Its supposed too. He has to see his neurologist once a month for a while and the eye specialist once a month also to make sure he's ok. I will make sure I tell them about the tingling if he has that problem.... Glad its working so well for u...I can't imagine what it must be like to have such horrible headaches. I had never heard of this problem until we ran across it with him. I am grateful its nothing more serious though.. Take care Hugs Angela