Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 Suhad, I just wanted to let you know,that I am thinking about you today.It must not feel like 2 years have gone by,since Samya went on to Heaven. I can't imagine how you must feel,but I wanted you to know that you aren't alone.I hope you are able find God's peace today,as you think back on Samya's life.You are in my thoughts and prayers. Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY ________________________________________________________________ Juno Gift Certificates Give the gift of Internet access this holiday season. http://www.juno.com/give Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2005 Report Share Posted January 12, 2005 Sensory Integration Dysfunction IS something you often see in Mito because of neurological damage. Both Asenath and Zipporrah deal with it. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see a photo look into what Mito looks like Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, bladder issues, wheelchair for distances, eye issues, autistic behaviors, gastric emptying issues... Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD, dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency, ... Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & Marquis (3), Joey & (12 months) (some with Mito symptoms) Is early puberty common with Mito? Hello! My son Dakota who is 11 years olds(unknown if he has mito), shows soft signs. We are getting ready to be sent to a Diagnostic doctor in St. Louis, Mo. to try to figure out what is going on with him. One question I do have is...is early puberty common with Mito? He started the month he tuned 10 years old. The same month my 15 year old son hit puberty. My 15 year old is my step son, so he has chance of Mito. The doctors agree that he is very young. I almost wonder if this may be going along with his patechia rash, joint pain(high SED rate, low white and red cells and tired and weakness. It is so strange not worring about Joey here lately, I feel like I have put him to the side. I'm not sure how you mommies do it that have more that one sick child. I guess we are about to find out. Any help would be GREAT!!!! Tamara(mommy of three GREAT boys, Stevie 15(healthy), Dakota 11(soft sins of Mito, and Lil Joey(Mito) Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2005 Report Share Posted January 13, 2005 Dear Darla, Obviously you know so much more about mito and I appreciate your info. I have so little experience with it. What I find interesting is that the supposed " mito " specialist does not seem to even be aware of this and does not even recognize the existence of sensory integration disorder. I am glad , though, that apparently the info is out there and accepted. THANKS AGAIN. You cannot imagine when Samya was little how much we struggled s a family with frustration with dealing with this when no on in the whole seemed to have ever dealt with it and now it all comes together. I used to think either I was crazy or my daughter was. Going to the park or social gatherings was a disaster for us but we kept on trying because we thought if we exposed her more, she would get over it. It breaks my heart so much to think of how hard that must have been for her. We got her a swing set for her 2nd b-day and it was torture for her and all the neighborhood kids enjoyed it while Samya sat in the house scared to death of it. I finally removed it because I could no longer deal with it. Leanna has very little of this, if any at all. God bless, Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.samyahaddad.com/.org/.net Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 Re: Suhad Sensory Integration Dysfunction IS something you often see in Mito because of neurological damage. Both Asenath and Zipporrah deal with it. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see a photo look into what Mito looks like Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, bladder issues, wheelchair for distances, eye issues, autistic behaviors, gastric emptying issues... Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD, dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency, ... Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & Marquis (3), Joey & (12 months) (some with Mito symptoms) Is early puberty common with Mito? Hello! My son Dakota who is 11 years olds(unknown if he has mito), shows soft signs. We are getting ready to be sent to a Diagnostic doctor in St. Louis, Mo. to try to figure out what is going on with him. One question I do have is...is early puberty common with Mito? He started the month he tuned 10 years old. The same month my 15 year old son hit puberty. My 15 year old is my step son, so he has chance of Mito. The doctors agree that he is very young. I almost wonder if this may be going along with his patechia rash, joint pain(high SED rate, low white and red cells and tired and weakness. It is so strange not worring about Joey here lately, I feel like I have put him to the side. I'm not sure how you mommies do it that have more that one sick child. I guess we are about to find out. Any help would be GREAT!!!! Tamara(mommy of three GREAT boys, Stevie 15(healthy), Dakota 11(soft sins of Mito, and Lil Joey(Mito) Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2005 Report Share Posted March 24, 2005 I was thinking about you this afternoon too, thoughts and prayers are with you and your family. Nothing i can say could possibly ease your pain, so just know were all here and all thinking of you. ((((hugs)))) Keely > > > Dear Suhad: > > > > Just a note to say that I'm thinking about you and your family today. I hope the ceremony went as well as can be expected and that you were shown love by your friends and family. Please know that all your friends here on the mito list care about you and we all think that you are the best mom. > > > Cindy Cruz (mom to Seth and Ben) > > > > Please contact mito-owner with any problems or questions. > > > Quote Link to comment Share on other sites More sharing options...
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