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Severe cognitive issues and not talking much…..
Posted: 10 March 2013 02:55 PM   [ Ignore ]  
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The last 3 years has been so difficult….  We had a 12 year old son that had seizures but he was able to live a normal, happy life until puberty hit….  Then our nightmare hit…seizures went crazy, he started fainting,, and then the huge cognitive issues began.  The climbing out the windows at 1 am….and getting lost.  Such a long and horrible story….  We have found out so much thanks to Dr. Diana and started the histamine blockers and what a difference it has made for seizure control.  BUT the medical world has no clue and then starts fighting every diagnosis we have of POTS and MCAD and tries to take away medicine. 

Our nightmare got worse one month ago, when they took away the dye free benedryl and started changing seizure medicine.  They had to prove that it was the dye free benedryl that was making my child sleep for 18 hours a day….  Instead, what happen is my son crashed with a blood pressure of 69 over 33 which ICU came to our rescue when they manually pumped him full of fluids to bring him back to us.  They ended up doing a spinal tap with sedation and what happened was amazing.  My son came out of it talking up a storm and making sense.  The medical world said .....  This happens sometimes that they talk out of their heads.  Hmm….  My son was making sense for the first time in a while but 3 or 4 hours later Caleb was back to sleep and no longer talking….

I am about ready to go nuts…..  it is the hardest thing to lose your son cognitively…..  I am praying Dr. Diana our new doctor can call you and get a plan.  Caleb’s life depends on it…..  Also….I believe Strep is playing a role as this time he had a positive strep test and 3 years he did too.  Antibodics will make him hallucinate…..he almost climbed out our upstairs bedroom window…  Thanks for listening.  Is there other cases like this??

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Posted: 10 March 2013 07:17 PM   [ Ignore ]   [ # 1 ]  
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I take it he doesn’t talk much normally, have you watched the Dr Theoharides videos ?

http://www.youtube.com/watch?v=3QFa36TBtvA

(You have to cut and paste it into your browser, as the links don’t work)

It’s just a thought, one of his patients, who could only say ‘up’ and ‘down’ was able to talk fluently after getting the Mast Cells under control.
Regards
Barbara
(UK)

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Posted: 10 March 2013 09:28 PM   [ Ignore ]   [ # 2 ]  
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Debbie, Working night, day and weekends to get this set up (patents, joint research agreements, etc). I WISH I could practice medicine without a license—I would have done so a LONG time ago! wink Since I can’t, I am using a “team”, instead. There is no quick and dirty answer for everyone. We have to look at everything, consider genetic defects, and THEN treat. I would be doing you a disservice by just taking a stab in the dark here, beyond seeing that hydrocephalus is *certainly* one of his issues. I suspect histamine reactions, too, among other things. I’d hit those things hard (including Diamox—but try to stay on top of his CO2 levels so it keeps working!). Oh, and do you elevate the head of his bed? Does he wear a cervical collar at night time? Amazingly, even those “little things” can make a HUGE difference. Back to work I go! And, FYI, Caleb is NOT ALONE in his symptoms! I hear such sad stories almost daily…(((hug))

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 27 March 2013 08:42 AM   [ Ignore ]   [ # 3 ]  
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huey - 26 March 2013 10:58 PM

I am so sorry Caleb is so ill.  Seems Dr. Diana does such a great job at telling me what she feels is going on with me (she has done so much research)!  Then I bring this information to my own drs. and they look at me like I have two heads????  They do not believe me when I tell the drs. what was found.  I also had hoped Dr. Diana could have contacted my dr. as well, however, she did not and it was and is very difficult to get help for problem I have.  I feel so validated with Dr. Diana, when I go my drs., they make my husband and I feel we have made this all up. Neuro. and others here tell me, they know I have a serious problem in my head and I could have a stroke anytime.  They tell me to call 911 if I lose vision or have other stroke like symtoms - dah!  We know.  Seems Dr. Diana knows what is going on with us but when we pass this info. on to our drs. they do not want to listen and shut me down and then I talk over them to at least read one paragraph from Dr. Diana about problem she saw.  What do we do then?  no plan, just come back for brain scans every six months.  She sees the problem on my scans because she knows what to look for but my neurosurgeon sees nothing, but is sure there is a problem———-  Bad day, bad headache, usually don’t feel this down - but it will pass as it always does.  Thanks for listening to my tirade!!  Huey

Hi Huey, I share your frustration, let me tell you! I, too, would show my doctors and explain to them what I believed was happening, and why treatments such as Diamox were helping my kids and I so much. They gave me blank stares, too! I have found it to be unproductive (and very frustrating) to try to talk to most doctors one at a time. Instead of spending valuable time banging my head against the wall, I am focusing on creating the right team to bring this to an interested and trustworthy institution.Only if they are involved in treatment trials and the results get into peer-reviewed journals will these understandings become mainstream, I’m afraid. I am trying to fast-track it by bringing completed research with patents to them now. Who wants to wait 20 years for new ideas to be proven correct, when we need help today? Not me, and it sounds like not you! There are two types of doctors to avoid—the closed-minded and the ‘snake-oil salesmen’. Yikes. Be assured, I am working as hard and as fast on this as possible. It is exhausting, stressful and expensive (spending our savings to do this!). But my kids are affected, as are so many others, and I understand the suffering that occurs if this goes untreated. I appreciate your support, meanwhile, my friend. Big hug… 

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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