Reply from sandi

Kim, some ideas for Miss Breezy, start going to the library if your aren't that way she's always getting a pile of books to go through. You can even request them online if she's looking for something specific. Don't keep her locked in the "childrens" section. There are tons of interesting books (age appropriate of course for content) out there in the real part! Decorating, crafts, astronomy, pet care, animals, designing, gardening, biographies, geography, architecture, cooking,etc! In the children's section of the public library they actually carry a very popular homeschool science author that are is a blast, Janice Van Cleave is the author, she has a ton of science books loaded with experiments that can be done with literally supplies you have in the kitchen. She has a lot of science project books too, the ones I am speaking of are different. Here's a link to her website which is pretty cool in itself, click on books then see how many books are under each subject!
http://scienceprojectideasforkids.com/ Just go to your libraries website and request some for her! Another idea is stories on CD. It may be fun for her to listen to audio stories. The Library will have those also, or look into some online. Adventures in Oddsey is one that comes to mind, but there are tons out there. Also watching movies! Some of the classics, there are quality movies out there! I loved what Lisa had to say about reading! Go Hardy Boys and Nancy Drew! There is a place called rainbow resource online, http://www.rainbowresource.com/index.php They have a catalog that is about 4 inches thick. I love it!  I homeschooled my children from 3rd grade and up.  Even though my kids have graduated and moved on to their colleges.  One does not need to homeschool in order to supplement their childs life with learning! I get a lot of children gifts from this catalog! So many great thinking toys etc! Nothing you will find at a Toys R Us! So from what Lisa wrote and myself here's to some encouragement to nurture your daughter when she is ill and at home! Also if she is struggling anywhere you can get something to supplement that area so she can excel! Please take what Lisa said to heart, she will not get so far behind she will not catch up. The teachers will keep sending her work home, she'll want to do it just to make the teacher happy! If there are any school only books, possibly her teacher would let her keep a copy (loaned) out at home for when she is ill, or possibly when she is bored and feels like reading ahead, that way when she has a bad day she's just reviewing. Kids really learn at their own pace, quickly moving in some areas and struggling in others and just when you think you have it figured out, they do excel in completely the opposite thing you thought they would!
Sandi
Ok, quick disclaimer about the size of the catalog, I am a geek, a lot of us are excited at the absolute amazing amount of products to look at and others are mortified at all of the products to choose from. Look at it as opening your horizon to more tools, if you even want them! If the catalog is not for you there's bound to be a dork like me in your midst to give it to!

Reply from kgruba

Can anyone tell me what helps with the "brain fog".  Brie has always had "raving reviews" when it comes to school.  "She gets along well with everyone."  "Everyone just loves her." "She is never a behavior problem. "  "She is a very hard worker and tries her VERY BEST" (although she still struggles in many areas - especially reading).  I work with her DAILY.  I have had her tutored. I had her in the Reading Recovery Program.  And we are now getting her on a "general education plan.".... As they can't put her on a medical IEP until we have an actual diagnosis that fits their criteria.  And yet she does not "retain what she learns (or already knew)."  And now for the very first time ever school is reporting that she "sits in a fog" and is not able to get her work done, focus or concentrate.  I was just looking for any suggestions all of you knowledgable and wonderful people may have

                                                                                                               Kim

Reply from riverwn2

Kim, I just started on a med this week to help with my brain fog and i think it is working VERY well. I found this article from NIH: http://www.ncbi.nlm.nih.gov/pubmed/10884588   and started on Vistaril 25 mg twice a day now--and its making a big difference to me.

Some people with SM will say that Doxepin helps their brain fog. I tried it, it didnt help me and I think the reason is my Seratonin levels are greatly affected by it and causes my levels to drop, which makes me depressed, so I stopped it. But it may help some people. Im keeping to the Vistaril for now. Hope this helps.
Hugs,
Ramona

Reply from kgruba

Ramona;
    Thank you for the information on Vistaril.  I printed that article / study and I am taking it to her doctors appointment on Monday.  We need to try some different meds like this for the brain fog and maybe mast cell stabilizers as all of the H1 & H2 blockers, the proton pump inhibitor and the steroid she is on are helping but not taking anything away yet.  I know it is just that we haven't found the right medication combinations or dosages that will work for her.  I have high hopes that this new Dr. will be our answer to this... hopefully he won't let us down.  One question I have... is this med sedating for you?  She already has a huge problem with sever fatigue and sleeps WAAAYYY more than any 8 year old should.
                                                                                             Kim

Reply from riverwn2

Hi Kim,
I was greatly concerned that the Vistaril would sedate me on top of everything else I took. The truth is, I feel much less sedated taking it.. which is weird but true for me. All I can say is, talk to her doctor about it and maybe try a small dose to see how she feels on it. Maybe play some kind of game where she has to think more and see if she thinks she is thinking better?? Good luck, give her a hug from me
Hugs,
Ramona

Reply from tlcsmom

Oh, Kim, God is smiling on both of our girls.  I am so glad that you finally got a response from NIH and that Dr. Carter was so caring and concerned.  It is such a relief, as we found out this week with TLC's Dysautonomia, to have a doctor showing concern and to be so knowledgeable.  Please let us know what you find out, it may be helpful for TLC and her mast cell condition.

Many blessings to you both and Merry Christmas!
Robin

Reply by starflower

That's fantastic news, Kim!!!   Exactly the kind of local doctor you want to have for Brie.

Heather

[u]Reply by gruba [/u]

Can anyone tell me of hypersomnolence could be related to MCAD?  Brie has had trouble with this off and on for 2 1/2 years but it is becoming quite severe.  If her activity is stopped she can fall asleep instantly!  She can sleep for 8-12 hours a night, take a 2-4 hour nap and be up for only an hour or two and fall asleep at bedtime with absolutely no difficulties. School takes 300% out of her!   I used to blame this on the fatigue... but it now seems to be more than just fatigue.  Even with all of this sleep she still sometimes falls asleep in school - sometimes 2 - 3 times a day.  This symptom waxes and wanes just like all of her other symptoms - but lately when she has it it is much more severe than it used to be. She has already been through the sleep studies for apnea and if she has apnea it is only mild - but even this is still in question.  The hypoxia and tachycardia (especially with sleep) are medically proven though.  She is VERY difficult to wake up during these times (took me 10 minutes the other day to awaken her).  Also her dizzyness is now almost daily and was so severe upon awakening the other morning that she couldn't sit up for about 30 minutes.  She couldn't even dress herself and I had to dress her while she was laying down. Her difficulties with learning and retaining information learned is "nill" at this point.

The latest Dr. (local Allergist / Immunologist) we are seeing has seen this 1st hand twice now and he is deeply concerned.  He is referring her to a Neurologist in hopes he will order an MRI.  Our 1st visit with him was 2 hours long and he tried to awaken her 3 times and at the end of the visit he saw how long it took me to get her awake to leave the office.  The 2nd visit was an hour long and the same thing occured.  While she slept she repeatedly broke out with her red "splotches" and some small hives - they would come and go... come and go.  I was excited to actually have a Dr. see this all first hand for once! - but yet deeply concerned for Brie.  

Brie has been really struggling these last few weeks.  We have again tried to get her off of the Entocort as she has been on it for daily for 8 months now.  This is the 3rd time we have tried this and she once again showed us that she can not go without it,  Although 60% of it is supposed to be absorbed in the colon "and it has little if any affect systemically" she has proven over and over that it greatly helps ALL of her systemic symptoms.  Two of her Dr.'s are in agreement that it is time to trial Gastrocrom - but I don't think either of them are very hopeful as they both have had "very limited" benefits in the patients they have put on Gastrocrom.  Can anyone who is on Gastrocrom tell me how long it takes to see improvement in symptoms, what the cost is for this, and what benefits they have received?

I think her latest  Allergist/Immunologist feels that he is "in way over his head" with her complicated situation - and Bless his heart... he is hanging in there and deeply concerned for her and trying everything he can to help us find some answers.  He agrees MCAD may be in the definite picture but "doesn't want to have her labeled with this until everything else has been ruled out as he doesn't want to miss something else that may be there."  I agree with this approach 100% as she has never had many things ruled out yet (the brain - due to all of her neurological symptoms and the heart - due to her cardiac symptoms).  He has tested her for Porphyria and is looking into "some other rare diseases."  He is asking for help from her local Pediatrician and now a Neurologist.  I had to laugh at him the other day as every few minutes he would say "this isn't normal !!!" and was quite distressed over what he was observing.  I told him that she has done all of this for 2 1/2 years now and unless it is really bad I don't even get worked up over it anymore and it just seemed almost comical to see someone else react the way I used to. (Not a funny situation - but one of those "you had to be there").

Our referrral to the NIH Undiagnosed Disease Program never got off the ground as the referring Dr. (who wanted us to return to them versus NIH) did not follow the required format for the referral.  Although this was a setback for us... it led me to her current Allergist/Immunologist that I have been talking about and believe me he isn't going to leave ANY STONE UNTURNED and if we still don't receive any answers / diagnosis I think he is then willing to make the referral.  Funny how when one door closes another door opens.  I firmly believe there is a reason for this (even though we sometimes don't like it or agree with it at the time) and I have to have faith that this will lead us to where we need to be in regards to finding the answers to help Bireann.

                                                                                                  Kim