Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 Hello , It is the same way here. We live 3 hours from Seattle Washington. They have a children's Hospital there. In order to get there we have to cross the mountain pass and in the winter they close them. I do not drive in the snow and so we are stuck here from oct-march. Jorden's ped. is ok. He is good with Jorden but knowing how to treat him is still left up to me. Im the one who has to ask for the test and some medications he needs. Its left up to me to know how to treat. Sometimes l know when Jorden has a ear infection. He is unable to pull or grab his ears to let me know, but l know and l know what ear is infected. My doctor cannot believe that anyone could know their child so well. When you live 24/7 with someone especially your child you know when there is something wrong. I feel its so unfair to these special little angels, that they have to struggle though all these tests and doctors and still not getting the medical help they need. There needs to be more done in the medical fields to help our children. So we live in small cities, it doesn't mean there is'nt a need for them. Best wishes to you and your family, Happy Holidays Marilyn Jorden's mom Washington On Sun, 29 Dec 2002 17:09:47 -0000 " shan29ca " wrote: > Hi Marilyn. I can relate with your troubles > regarding getting > medical help for your child! The town I live > in is has 10,000 people > in and we are 4 hrs from any major center. We > do have doctors, but > they are only General Practictioners. Great > for broken bones and > minor illnesses...Completely over their heads > when it comes to > Jarret's condition! I bring him in for an ear > infection and end up > explaining what pachygyria/lissencephaly is!! > I can't even get his > doc. to do a requisition form for VPA levels! > I have to make a long > distance call to either the neuro or his ped. > and for appointments, > his ped. comes in from Winnipeg every four > months, which is nice but > Jarret has other services that call for us to > go elsewhere. > Needless, to say we are on the road alot. > I am so glad that we decided to get a computer > a few years ago, > otherwise I would be feeling very isolated and > alone. Not to mention > the fact that I would have missed out on > meeting some very special > people. > {{{hugs}}} to all the kiddos > Season's Greetings from Canada > > Jarret's mom who is currently with his > respite worker so I'm > able to burn up the cyber wires > > ********************* > > > > > > We didn't know that there was anything > wrong > > > with Crystal, until she was 4 > > > mos. old. She started presenting with > Infantile > > > Spasms. Thank God, her > > > pediatrician immediately sent us to the > > > hospital. After obseving her > > > overnight, the hospital transferred her to > > > Medical Center's Regional > > > Children's Center. Unfortunately, the neuro > > > there was not very informed. She > > > had an MRI done in the 1st hospital she > was > > > admitted into. He misread her > > > MRI . She had an EEG done at the 1st > hospital. > > > The report from it stated > > > that hypsarrythmia was present. This is > > > indicative of Infantile Spasms. He > > > disregarded that EEG & report. He kept > > > repeating her EEGS every 2 weeks, & > > > insisted that she was having Myoclonus of > > > Infancy. This is a benign > > > condition that babies grow out of. He > placed > > > her on phenobarbitol. > > > Phenobarbitol does not work on Infantile > > > Spasms. This did not stop her > > > seizures. It just dampened them down, so > that > > > they were harder to detect. > > > She slept almost all of the time. She > stopped > > > waking up to nurse. He took a > > > blood level, to determine if she was toxic > on > > > the stuff, & then never called > > > me to tell me the results. She WAS toxic. I > > > called her pediatrician & he > > > looked at the results & told me so. He was > > > shocked that the neuro never > > > contacted me. At this point, he sent me to > > > Children's Hospital of > > > Philadelphia. Since it was out of state, I > had > > > to go through the ER. They > > > correctly diagnosed her as having Infantile > > > Spasms. They did a second MRI on > > > her. They told me that she had Cerebral > > > Cortical Dysgenesis. Dr. Dobyns is > > > the one who looked at her films later on & > > > told me that she has Bilateral > > > Perisylvian PMG. CHOP took her off of > > > Phenobarbitol & put her on ACTH to > > > stop the Infantile Spasms. Within 5 days > she > > > was seizure free. She stayed > > > that way until just before her 3rd > birthday. > > > One morning, I found her semi-conscious on > her > > > bedroom floor. My mom & I > > > rushed her to the ER. She lost > consciousness > > > enroute. She stayed unconscious > > > for about 2 hours. They infused her with > > > glucose water, which helped to > > > revive her. Her neuro at the time ( we're > > > presently on neuro # 4 ) had > > > another EEG done on her. For the 1st time > in 2 > > > 1/2 years, it showed > > > extensive seizure activity. He started her > on > > > lamictal. She broke out in a > > > rash within the 1st month. At that point I > > > changed neuros, because he wanted > > > to place her back on the lamictal once the > rash > > > cleared up & I didn't !!! A > > > rash from lamictal can turn necrotic. A > > > necrotic rash can be fatal. I just > > > wasn't willing to put my daughter's life on > the > > > line. The new neuro ( he's > > > the one that we're presently using ) > started > > > her on Depakote. Her seizures > > > started to present as staring spells. Since > > > then, she's been on quite a few > > > seizure meds. She now has staring spells & > > > tonic seizures ( the falling > > > down ones I described to Suvi ). I don't > think > > > the meds are doing much at > > > all to help her. > > > What kind of seizures is Jorden having ??? > > > Phenobarbitol only works on > > > certain seizure types... > > > > > > I wish you all the best in finding the > right > > > meds to help your son. > > > > > > Give him a great big {{{ HUG & KISS }}} for > > > us... > > > > > > Take care & be well... > > > > > > - mommy of my Angel Princess, Crystal > > > Aquielle - almost 5 years old - > > > BPP - Grade 3... > > > > > > > > > > > > [Non-text portions of this message have > been > > > removed] > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2003 Report Share Posted February 11, 2003 Hello , I jsut had that smae test done with my son Jorden. they tested the 17th chromosome and his was normal. I have a daughter she is 4 then l had my son Jorden he is 2 and he has PMG then l had my baby 11 months after Jorden was born. She is one now. I was in good health while l was pregnant with all 3 of my kids. I took goo care while l was pregnant with all my kids. The only thing different was the water l drank. I have found out that where l lived when l was pregnant with my son that its a community well. The well is located in a shed. The shed also used to hold chemicals and many other things for a cherry orchard. I was the only person in 20 years to concieve and give birth living there. I just find it so odd. I know even if l find it was the water it doesn't change anything for my son. Im just looking for answers. I most likely never get that. Thanks Marilyn -- Re: Welcome to new member > > > > > Hi Kristie, > Sorry this is so late but we don't have email at home so only get it > every few days. Anyway, I wanted to let you know that our little Max > who is 2 1/2 also is severly effected. He doesn't sit, roll, talk, > has difficulty holding onto things for long and is STILL working on > head control. Unfortunately for Max he was born with macrocephaly > which means large head and this has really gotten in the way of his > motor development. It's just so darn heavy to hold that thing up! > Also Max has seizures which also get in the way of development. > But Max is a lovely sweet boy with the best grin and very handsome in > his new glasses <smile>. Tell us more about na. We would love > to hear it. > Joanie & Max > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2003 Report Share Posted February 11, 2003 Hello , I jsut had that smae test done with my son Jorden. they tested the 17th chromosome and his was normal. I have a daughter she is 4 then l had my son Jorden he is 2 and he has PMG then l had my baby 11 months after Jorden was born. She is one now. I was in good health while l was pregnant with all 3 of my kids. I took goo care while l was pregnant with all my kids. The only thing different was the water l drank. I have found out that where l lived when l was pregnant with my son that its a community well. The well is located in a shed. The shed also used to hold chemicals and many other things for a cherry orchard. I was the only person in 20 years to concieve and give birth living there. I just find it so odd. I know even if l find it was the water it doesn't change anything for my son. Im just looking for answers. I most likely never get that. Thanks Marilyn -- Re: Welcome to new member > > > > > Hi Kristie, > Sorry this is so late but we don't have email at home so only get it > every few days. Anyway, I wanted to let you know that our little Max > who is 2 1/2 also is severly effected. He doesn't sit, roll, talk, > has difficulty holding onto things for long and is STILL working on > head control. Unfortunately for Max he was born with macrocephaly > which means large head and this has really gotten in the way of his > motor development. It's just so darn heavy to hold that thing up! > Also Max has seizures which also get in the way of development. > But Max is a lovely sweet boy with the best grin and very handsome in > his new glasses <smile>. Tell us more about na. We would love > to hear it. > Joanie & Max > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 I am so sorry for your loss. Debbie > > For those of you who didn't make it I just wanted to let friends and acquaintences know that the service was beautiful and he truly would have been satisfied with it. His Granddaughter Lyndsey Channell, and Grandson Lucas Norman (my children) both wrote letters to their papaw. Lyndsey read hers but lucas is only 9 and I had to read his. It was so heartbreaking to see all these children saying goodbye to there papaw. I myself wanted to say that I miss my father so much already and I just can't believe he's gone. I love you daddy and will never forget all of our good times. RIP Daddy > > Quote Link to comment Share on other sites More sharing options...
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