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Need Major Jingles PLEASE - Kian Update PAGE 7 STILL GOOD NEWS, AND BAD NEWS

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  • #21
    I would definately agree about talking to your pharmacist about all the different meds he's on. If he's young ( I realize this doesn't help right now) you may have a chance of him growing out of it. Alot of children grow out of their seizures by the time they're 6.

    Another thought too, when a person has a seizure, they tighen their whole body (including their veins). If you take him to the hospital immediately following one of his episodes, his veins wouldn't have let down yet which would make it hard for someone to get an iv started immediately. It takes about 40 min - 1 hour for your body to start to let down from a seizure.

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    • #22
      JINGLES!!!!!
      *************************
      Go, Baby, Go......
      Aefvue Farms Footing Inspector

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      • #23
        BIG jingles to you, your son, and your family!!!

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        • #24
          <BLOCKQUOTE class="ip-ubbcode-quote"><div class="ip-ubbcode-quote-title">quote:</div><div class="ip-ubbcode-quote-content">Originally posted by JumpingPaints:
          <BLOCKQUOTE class="ip-ubbcode-quote"><div class="ip-ubbcode-quote-title">quote:</div><div class="ip-ubbcode-quote-content">As for all the "medical" advice you are receiving on this HORSE bulletin board, please take it with a very large grain of salt. You have no idea if any of these well-meaning people have any medical qualifications beyond some Internet research. </div></BLOCKQUOTE>

          I didn’t want to get into this, but I have to respond to the implication that I may collect my medical information from internet research.
          </div></BLOCKQUOTE>

          Thank you for the background, JumpingPaints. I did not mean anything personal and hope you did not take it as such.
          "My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we'll change the world." ~ Jack Layton

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          • #25
            From JUMPERS21 - For some strange reason the board won't let me post, so Jules is posting this for me. I just wanted to thank everyone for their prayers and jingles, and I will be back on to update as soon as it lets me post again! In the meantime, does anyone know why it would say "Message body is a required field" everytime I try to post?? I type in the message and when I click send it doesn't work! Thanks -Courtney

            To Courtney from Julia---&gt;Jingles and awesome horses you will have!!!! and nice breeding program on its way, will be the best in US and I will beg you for your foals every year, LOL!
            Home of Five Kings HsH (Eurocommerce Berlin x Diamant de Semilly x Quidam de Revel) and several top bred mares www.hshorses.com

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            • Original Poster

              #26
              Ok, now that it will finally let me post, here are some individual responses for everyone that's been jingling for Kian! An update is at the BOTTOM of this post!

              BUGS N FRODO - The pharmacists that we use have all assured me that it is not an INTERACTION of his medications causing this, but some of the medications he is on can lower the seizure threshold for kids that are prone to seizures...so they don't help on that end. However these medications are necessary at the moment, and we have successfully weaned Kian off of 2 of them thus far. Thanks for the jingles, much appreciated!

              JUMPINGPAINTS- Thanks for the info, I appreciate it and will look into that also! Every tidbit of info helps at this point. We are not thrilled about the meds he is on, but without them he is medically unstable (without SOME of them, that is...others he is being taken off of at the moment on a trial basis). His nutrition is wonderful, I make my own babyfood out of organic ingredients and although he is bottlefed formula also, he has a well rounded diet. The other causes of seizures you mentioned, while being VALID possible causes, are not the problem in this case, but thanks again!

              WHISKEY LULLABY - sending you a PT back, couldn't send those either for awhile!

              SABINA - thanks for the idea, Prilosec COULD lower the seizure threshold, but Kian cannot be off of his medication for reflux or his asthma sparks back up...so for now we must leave him on that! Changing his diet is possible, but note that he does not get cows milk whatsoever, or most other things that would cause reflux problems. The physicians HAVE said that the meds COULD be the problem, so they are very helpful and I love them dearly, best docs in the WORLD! Thanks again!

              EVALEE HUNTER- Yes, Childrens Hospital of Philadelphia is where Kian goes to be treated. They are currently ranked #1 in the nation and I agree with that ranking, best docs I have ever dealt with. In case some misread my first 2 posts, it's not CHOP that I dislike, it is the LOCAL hospital. I do appreciate the recommendation for AI Dupont and I will go there if I feel a 2nd opinion is ever needed. Appreciate your time, caring, and help!

              CHOCOMARE - thanks for the website link, I might finally have time to check it out tonight but I hope it has some wisdom for me! Also thanks for the well wishes!

              HITCHINMYGETALONG- Kian is almost 9 months now. Treatment will not and has not stopped, they could not find anything wrong with certain areas (except some small inconsistencies (sp)) but they never stopped treating him. I just want everyone to know that CHOP is wonderful and are doing everything they can, would not want the good docs to get a bad rap! We do have a pediatric neurologist who is wonderful, and following Kian very closely. Thanks for sharing your son's story with me, and thanks for the thoughts and jingles!

              Alyson - thanks for your help as well. Just so you know, we have had problems with the LOCAL hospital (NOT CHOP) before he ever had seizures. Not to bash them (the reason why I did not name them) but CHOP is just so experienced with infant patients and IVs that I ABSOLUTELY LOVE THEM!

              JULES - Thanks for the jingles, and feel free to beg for my foals anytime, the in uteros are already sold but maybe I can make an exception and sell one to you too! lol

              UPDATE ON KIAN ... PLEASE READ
              Kian went to Childrens Hospital through the Emergency Room on the night of my last post. He was admitted for a major seizure, and THANK GOD something finally showed up on his EEG test to show that he did in fact have a seizure (not great news, but at least they BELIEVE they are seizures now!) He stayed overnight, was watched continually with me at his side, and they have started him on anti-seizure medication which has helped so far. He is slightly agitated, but the medication is the most tolerable so he should be ok after his body gets used to it. Also, he has been taken off 2 of his asthma medications, please continue to pray that he will be ok without them.

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              • #27
                well, I am glad there is HOPEFULLY some headway there. JINGLES and thanks for the update.
                ~Amy~ TrakehNERD clique
                *Bugs 5/86-3/10 OTTB Mare* RIP lovely Lady, I miss you
                *Frodo '03 Anglo Trakehner Gelding*
                My Facebook

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                • Original Poster

                  #28
                  Please continue to jingle for Kian...it's been a long few weeks...

                  Although he is now on anti-seizure medication, he is continuing to have seizures.In fact, while I was typing this I had to stop and monitor a seizure in process. This is so frustrating, I hate watching him confused and in pain. I don't know if he feels pain during the seizure, I don't know if he's scared to death, I don't know if he's truly confused as to why he can't control his body. The only thing I know is that I love him, and I wish he could tell me what was happening...but he can't talk of course.

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                  • #29
                    Jumpers21, as a mom I can't even imagine how tough of a time this must be for you! It sounds like you are doing all the right things for your son to see him through this and get the best treatment for him.

                    You are going to need help with your move, do you have friends and family nearby?
                    www.plainfieldfarmky.com

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                    • #30
                      Jumpers21, continued jingles for Kian (love the name) and your family. I'm so sorry you are all going through this. It is clear from your posts that you love your son so much, and it must be so heartwrenching to feel so helpless.

                      Many jingles from Kentucky.
                      "My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we'll change the world." ~ Jack Layton

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                      • #31
                        Jumpers, from this mother's heart to yours, I wish you peace...

                        I have firsthand experience as I went throught this same thing with my oldest (now in her 20's and seizure free).

                        I had the frustration of no diagnosis for quite some time as well. Finally, I took her from PA where we lived to the Nat'l Children's Hosp. here in D.C., where they were finally able to diagnosis and treat her. I continued to bring her here from our home in PA for follow-ups and as needed visits. Serendipity prevailed, and we were transferred here. She continues to this day to be a patient of one of their nuerologists, a premier pediatric MD.

                        I KNOW how scary, frustrating and heartbreaking this is for you, and my thoughts and prayers are with you.

                        As for what your sweet Kian is feeling: I found comfort - when my daughter was able to explain it - in that she really wasn't *there* during her episodes... She explained it as being just a drowsey sort of feeling, and then her seizures would begin - without her really being aware of them.

                        She always came out of them slowly, and quite dazed - but was pain and fear free.

                        Hope that helps ease your mind...

                        Big, big hugs...

                        Edited because of waaay too many typos!

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                        • #32
                          jingles to you and Kian- thinking of and about you-
                          I hope you have family and good friends to support you thru this; when I went thru something similar with my son, it felt lonely. Know that we are listening to you and rooting for you all-
                          A

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                          • #33
                            Good Heavens. How scarey!

                            I'm getting to this thread late, but am adding my jingles, nonetheless.

                            Hope things continue to improve for little Kian.

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                            • #34
                              Just saw this thread, and of course Jumpers21 and especially Kian have my continuous ***JINGLES***!!!

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                              • #35
                                Continued jingles.
                                I\'m not crazy. I\'m just a little unwell.

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                                • Original Poster

                                  #36
                                  thanks for the jingles! Kian visited the Neurologist today and she upped the dosage of his medication....let's hope they take effect this time! More later, too tired to type much.

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                                  • #37
                                    New to this thread, but sending major prayers and jingles from one mother to another. Hope the new dosage provides the relief you are searching for.
                                    Lapeer ... a small drinking town with a farming problem.
                                    Proud Closet Canterer!

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                                    • #38
                                      I just saw this thread, and am sorry I didn't offer my support sooner. I know nothing about medications, or doctors. But I can see from your thread how much you care for your adorable son, and hope everything works out for the best.

                                      Tons of JINGLES from N. J.
                                      Wallstreet Rally
                                      My Webshots

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                                      • #39
                                        Jingling that those meds kick in!
                                        "And remember-if it gets really bad, there's always tequila..." J.P.

                                        No horse should be Peepless

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                                        • Original Poster

                                          #40
                                          THANK YOU!!!! I don't know why I am still up, I guess I am afraid to go to sleep....that if he has a seizure I might sleep through it because I am so overtired....

                                          Anyway I might as well update everyone about the rest of the Neurologist visit, since you all are so kind and keep jingling for us!!

                                          Chromosome Tests - NORMAL, YAY! Inital bloodwork also came back with nothing wrong, so more bloodwork is being run for some MAJOR things like Metabolic issues, etc.

                                          Developmental Issues- unsure how bad the extent of these issues are. He is still unable to sit up, unable to crawl, and SLIGHTLY weaker on the left side. Mentally, he seems to be on point....says different syllables, says MA MA and MAAAAM. Seems to understand things pretty well. No hearing issues

                                          Visual Problems- Neurologist wants them to put a patch over his good eye, so that his BAD eye will work harder and hopefully correct itself. I will be sure to post pictures of my little pirate when he's going through this.

                                          General Issues- Still no pinpointed cause for the seizures, other than that we know his frontal lobe is not maturing as fast as it should. No clue why. Apparently over 50% of seizure conditions are never diagnosed, so we may never get a real sense of what is going on. As long as we can control these things, I don't CARE if we get an actual diagnosis. Make my son as happy and get him living as normal of a life as possible and I am happy! New symptoms during his seizures are considered normal, although it's scary as heck when your child cannot lift his head up on the Left side after a seizure ends, or when his chin is quivering like he's hypothermic even when it's 80 degrees out.

                                          MEDS Trileptal increased from 2 mL dose 2x day to a 2mL dose 3x day.

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