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Post by tammiedawnpatton on Jul 24, 2004 2:27:38 GMT
Hi... I am a mother of 4 1/2month old John Talin, he was born on 3/8/04 w/Lissencephaly MDS. He is now home after being in the hospital twice since birth. We think it's a miracle that we got to come home this last time, but been doing good the past 2 months. He does have a g-button and is on caffeine, zantac, & phenobarb. We were given 2months - 2years for his life span... We are adjusting pretty well at the time. I was just wanting some imput from parents on what they have been told or how old their children are. Just curious, since this is all new to me..
Thank you - Tammie Patton from Wooster, Arkansas
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Post by GCOLLINS on Jul 28, 2004 17:44:16 GMT
Ms. Patton, Our prayers go out to your family and little John Talin. Our daughter, Maria Victoria, was born 6/6/02, and diagnosed shortly after with Lissy type 1, Miller-Dieker. Needless to say we were devastated. My wife Gloria and I were angry, could'nt believe it, why us! We soon got passed these emotions with our faith in God. Our great neurologist told us to appreciate every moment and day with our Maria. Her smiles and happy sounds gave us so much strength, we all knew she was His angel. We found our path to follow was the path of love and comfort and we followed this till the end. Maria Victoria's life was mostly spent in Presby. Hospital, about every 4 to six months with bacterial pneumonia from aspirations. February 2004, Maria was admitted again, after a week she worsened and went into the P.I.C.U. she eventually wound up on an osilator then a ventilator, the bacteria kept coming back. Our angel, Maria Victoria went to sleep in Heaven, Sunday, march 21, 2004. Since John Talin has his g-button, I hope and pray he will never get pneumonia. from our experience our specialist recommended the button and a trach for Maria. But as I said our path was for love and comfort. We could not do this to Maria Victoria, not with the prognosis. You are making good decisions and I sense that you are emotionly strong by your entry. God bless you and your family, reply if you would like more information on medical test and medications. Greg Collins Charlotte,NC ps:There is a poem by Edward Guest my mother enter in Maria's guest book, it gives me great strength, please read www.legacy.com
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Post by tammiedawnpatton on Jul 28, 2004 18:47:45 GMT
Mr. Collins - I am sorry to hear of your loss of sweet Maria Victoria. She was beautiful and I know was loved so much. The poem was also beautiful. Thank you so much for sharing and talking with me. It is a long rough road, but we can make it through with God's help. We have turned it all over to him and JohnTalin is doing so good for the time being. He does have the g-button and his siezures are under control for now. May all the prayers continue.
God Bless - Tammie Patton Wooster, Arkansas
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Post by gcollins on Jul 28, 2004 20:44:18 GMT
Hello to the Pattons, Out of curiosity what seizure medicine is John Talin taking? Maria was on Trileptal, she did'nt like it, I tried a drop and it tasted like vanilla with a bitter after taste. I think Maria just tasted the bitterness. During Angel Maria's life we became very familiar with many types of doctors, I hope this info is helpful and not overwhelming. Of course there is the pediatrician, then came the neurologist. We had a geneologist, who diagnosed M-D syndrome for Maria, and tested Gloria and I, we were told it was not genetic Lissy and could have more babies (@43??) As Maria developed additional specialist were required, there was a gastro intestinal for rectal stimulation with periodical check-ups. There was an allergist for testing allergies food/mold/dust. This was worth it because we found out ahead of time Maria was allergic to some but most importantly she was allergic to eggs. So during flu season everyone in our house was required to get the flu shot for Maria's protection. We also had a urologist because she developed a urine infection, more common with girls. We found alot of assistance from Mecklenburg County Mental Health, their Watkins Center. They did a hearing test for Maria, and reffered us to another hospital for more testing of the coacial (sp). This is the nerve that carries the sounds from the ears to the brain. Though Maria's hearing was presumably good at birth, it isn't certain if sounds were being carried to the brain, (B.A.R.E test) The center also provided us with Maria's own coordinator, Kim. She came to the house to evaluate Maria's developement and recommend therapies, physical, oral (for feeding skills), and occupational. Kim was a great help providing us with a list of experienced agencies specializing in "new borns" and she went so far as to contact them to follow up with us for appointments. Kim made periodic visits to our house in addition with special toys to help stimulate Maria''s senses. She did alot of telephone work and communicating and scheduling she is the greatest. Don't think you guys can handle it alone, you can't, and you will need all the available professional help and support of your families and friends for little John Talin and you guys. I would also like to recommend a tablet or notebook kept handy to write down routines, start with the date at top, feeding time, medicine time/amount, seizures time/type/duration. Anything, nothing was to small a detail for us. This info will be invaluable to these doctor's. Also, get all medicines and dosages, doctors w/phone numbers, seizure histories, hospital visits, written down in .DOC form if possible. Keep one on the frig. for emergencies, and always take a copy to the doctors appointment, it will save you time and sanity! Of course update the .doc when something changes or is addtional. Best regards and God bless, Greg Collins
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Post by tammiedawnpatton on Jul 28, 2004 21:31:53 GMT
To the Collins- John Talin is on phenobarb for his seizures twice a day, They seem controled as of now. His are in the right temple, so they are not noticable as of now. He is also on caffeine once a day and that is given in the mornings. The doctors started him on this during our last visit in the hospital due to when he stopped breathing, they said it was also apart of his brain, which the brainstem is what tells you or controls the breathing and it is also defective with this Lissencephaly. So they put him on caffeine to help stimulate him and it has. He hasn't had any of the stop breathing problems since being on the caffeine. We also have a nurse that comes a/b 3 - 4 days a week and checks him out and everything. John Talin has OT, PT, and speech, each one twice a week that come into our home for therapy's. We also have a pediatrician, and a neurologist, and cardiologist, audiologist. We also had a geneologist, who diagnosed John Talin with the MD syndrome, which was a small deletion in chromosome 17. She wanted to test Todd and myself, but we didn't see any need, since we are not having anymore children. I got my tubes tied with John Talin.
He couldn't suck or swallow when he was born and he came home with an NG-tube and then after about a month when we were back in the hospital b/c of respitory destress due to his heart, PDA, He had heart (PDA) surgery and that is when his seizures started, but all in the right temple as of now then in less than a week he had the g-tube surgery. This was a lot on a little one in a week's time. Two major surgeries on a little one. I think all of this is what triggered his brainstem for him to stop breathing. We almost lost him at that point, but didn't. It wasn't his time to go.
He still hasn't passed a hearing test yet. We have been several times and he has fluid in his ears. They are giving us 2 months and if the fluid isn't gone at that point they are going to put tubes in his ears. I honestly think he can hear. He will look when you talk to him and he startles at different things, so I feel like he can hear.
He has an appointment Monday Aug. 2nd for a swallow study and then on Thursday Aug. 5th he has an eye exam. Here again I think he can see b/c he does follow toys and different objects, but we are not sure of how much he can see. His left pupil stays big, it doesn't ever dilate like the right one..
Are you and Gloria going to have anymore children or do you have anymore children??
God bless you all - Tammie Patton Arkansas
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Post by Lesley Halliwell on Jul 28, 2004 21:43:29 GMT
Hello Tammie
My little boy Patrick also has Miller Deiker Syndrome. He will be 2 years old in October. I too remember reading that the general life expectancy of children with this condition is about 2 years old. But since then I have read of many children who are in fact much older than this (the oldest I know of with MD is 10 years old).
Patrick seems to be doing okay too! He is on medication for seizures which are fairly well controlled and manages to oral feed 'baby' food. All his drinks are thickened as he doesnt manage liquids. So far, Patrick hasnt had to be admitted to hospital for any chest infections. Developmental wise Patrick is still fairly floppy and struggles to hold his head up. His awareness of what is going on around him is very limited but there are definately things that he enjoys, like bath time and, when he is in the mood, bashing his mobiles!
In terms of Patricks future I find it easier to take it one small step at a time. Right now we are enjoying the summer together and then soon it will be time to think about celebrating Patrick's second birthday. I try not to think too far ahead because nobody knows for sure what the future will bring.
I hope this is of some help.
sending you my best wishes
Lesley Chester, England
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Post by gcollins on Aug 5, 2004 15:47:07 GMT
Hello Tammie and family,
I sincerely hope and pray that John Talin has passed his doctor's appointments. I remember Maria Victoria going through two swallow test, she did'nt seem to mind the milky or chaulky stuff she had to swallow. The test was over quickly swallow, observe x-ray images, done. Much harder for me with all the uncertainties going in with her. When Maria had her first eye exam the doctor noticed that her head and eye movement were'nt insync. He pointed out that to get here eyes going left or right she would move her head in that direction before her eyes would follow. It was again contributed to lissy and the lack of motor skills and late development. Ourselves, I have a 10 year old stepdaughter, Suzy. I have mixed emotions of my wife and I having another baby. Both being over 40 runs a higher risk of birth defects. But as I told my wife when she asked me this very question 2-3 weeks ago, I replied "If God wants us to have another child then we will." So we'll see. Best regards and God bless you all, GregC
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caringbridgeorgscdrew
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Post by caringbridgeorgscdrew on Sept 3, 2004 16:12:10 GMT
Hi, I don't have any words of wisdom for you. I don't know that there are any. However, it sounds as though you are coming to terms with what you child and family are facing. My sister and her family would truly value your thoughts and experience. My nephew Drew, born July 22, is dealing with a tremendous amount right now. His website is at caringbridge.org/sc/drew. I just know that they would appreciate hearing from someone who knows what they are dealing with. Thank you and I pray that your little one stays strong.
Uncle Steve
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