Guest guest Posted February 17, 2007 Report Share Posted February 17, 2007 That is so inetresting. Are any of the meds she is on for brain development? I am just wondering why the sudden turn around? Vitamins? What does your doctors say? Traci Alec, 10 months, rolling everywhere, barely sitting up for about 45 seconds at a time, eats okay, no seizures. and Evan wrote: I am curious about the age and abilities of your child as I have never met another parentof or child with pmg. I know that abilites and additional conditions vary so much from kid to kid. Will you share for the insite and encouragment of the rest of us. My daughter is now 3 1/2 was diagnosed with pmg at 4 1/2 months when she started having seizures (infantile spasms) and we went to the ER for tests. She had been developing normally till that point but then everything stopped. Over the next year we were in and out of the hospital 7 times, spending a total of 2 1/2 months there and she had 2 surgeries (got a vagal nerve implant for seizures and a g-tube for feeding) We tried 4 different meds for seizure control with varied improvment and side effects but no control. A year ago thanksgiving began to cry and laugh. Last July she began holding and feeding herself her bottled formula and we now only use the g-tube for her meds. She has about 7-9 months old deveopmemt but is blossoming this year even though we were originally told she had a slim chance of living past age 3. She uses a stander on occassion and just began bearing weight over the summer and rolling all over to get around. her coordination is continually increasing as is her muscle tone, though she still wont eat by mouth accept for her bottle. We started giving a nutrition supplement called Reliv in May and have seen continued impovment since with alertness, awarness and interest in her surroundings. And we have work all the way up to her getting on all 4s on christmas day (so now her hair is starting to finally grow back on hte back of her head) and just this last week she started getting into a w-sit on her own and can now hold the position while playing with a toy for a few minutes. She is currently taking Vigabatrin and Ativan and we just added Keppra for her seizures which are now anywhere from 0-about 6 a day and they vary in type now too. thanks for reading, , mom to age 3 w/pmg and epilepsy and Tucker age 14 months, typical development --------------------------------- TV dinner still cooling? Check out " Tonight's Picks " on Yahoo! TV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2007 Report Share Posted February 17, 2007 Quinn is 13 mos, started solids (stage two fruits and veggies, cereal) the first week of Jan. He doesn't sit, but likes to stand, supported, so we'll be looking into a stander soon. He babbles and coos, fairly often appropriately ( " Go " being his favorite, but also " aye " or " hi " occasionally, sometimes " no " , rarely two-syllable sounds that sound like " thank you " or " all done " --working on signing with him mostly for something to do for his motor issues), which has led his therapists to think that his initial prognosis of severe MR is not exactly accurate. He has three different types of hand splints and will soon be fitted for foot/ankle splints. He actually had much higher, functional tone before he was, say four months. I have a picture of him sitting up with my hands waiting to catch him at about 2 1/2 mos. He used to roll front to back, but does it very rarely now. He developed seizures at about 6 mos? I can't remember exactly. He takes Trileptal for the seizures (neuro suspected but ruled out infantile spasms), experiencing rare breakthrough seizures. He also takes Prevacid for acid reflux, this has been very effective. My concerns for him are: his vision is 20/80 at best, his right eye is reluctant to cross the mid-line. He's easily overwhelmed by chaotic sound, but loves music, esp to play at the piano. (smiles) His digestion is sluggish and he doesn't seem to process the solids (even as soft and slurpy as they are) very easily. As he grows, it will be harder (of course) to lift him. He's 23 lbs now, but as he gets bigger, he'll require a variety of chairs/equipment. I think I'm reaching the point where a custom van and single story house will be necessary. I've already had some significant back pain, so. . . The big excitement for the week is that he drank from a sippy cup really well for the first time! The subsequent attempts haven't been as successful, but whatever. We're happy dancing anyway! Not sure if this is what you're after, but thanks for listening. I'm always glad to hear about other parents' journeys/experiences--it makes it all somehow easier, you know? (too, heh), mom to G (11), E (9), K (6), S (4) (all more or less neurotypical), and Quinn, 13 mos. ??? (still awaiting Dr. Dobyns' opinion) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 , age 6 on Feb. 22nd, and diagnosed PMG at age 4 months. Diagnosis was very shocking since he was 6 weeks premature and we just thought he was a little delayed. He was very unpredictable, and thought he had colic. Doc ordered skull xray, MRI and EEG due to small head size and neck arching. Found PMG through the MRI and EEG ruled out infantile spasms that they thought was the neck arching. Neck arching was due to reflux which gradually went away. Medical issues: Seizures started at age 2, so he's been on Topamax ever since with good results. Still has breakthrough seizures when ill. He's been in OT, PT and speech since 6 months. No meds have helped with muscle tone which has been worsening over the last year. He used to use a stander but high tone in legs has made it painful for him. Has had 3 eye muscle surgeries to correct misalignment. Now wears glasses and vision seems much better. Will be 2 years in April that he's had a wheelchair for mobility. Milestones: Other than smiling, he hasn't truly reached any milestone. He doesn't hold his head up for longer than 90 seconds. On his tummy, he can move in a circle but doesn't go anywhere. (I consider this a small blessing actually.) He can eat by swallowing thickened liquids and purees through a feeder bottle. Is currently about 33 lbs, and we are considering a feeding tube mainly for meds so we can start concentrating on spoon and straw feeding without the worry of not getting medication by mouth. Abilities: He actually has decent fine motor grasp but lacks gross motor strength. He can grasp the string of a balloon or the stem of a leaf on purpose. He isn't strong enough to hold anything larger than a pencil. He is inconsistent in using switches and is non- verbal. He definitely knows who his favorite people are and is more social than anything. He'd rather see people than toys. He loves physical contact, and sometimes the rougher the better (riding 4- wheelers and horses). He has a new " girlfriend " every year at preschool and is well-liked by everyone. We are getting ready to transition to elementary school after holding him back last year. Our school district isn't really equipped although they all keep saying, mainstream is still an option. I just don't think he'll get anything out of a regular classroom. His IEP is Tuesday and we'll be touring some other surrounding districts and hope to have a plan in place by April or May for the fall. It's still hard to believe that he's six years old. His older brother (age 9) and younger sister (almost 5) are true angels, watching out for him and loving him. My husband is a Firefighter/Paramedic which really helps. We're in Ohio. > > I am curious about the age and abilities of your child as I have > never met another parentof or child with pmg. I know that abilites > and additional conditions vary so much from kid to kid. Will you > share for the insite and encouragment of the rest of us. > > > My daughter is now 3 1/2 was diagnosed with pmg at 4 1/2 > months when she started having seizures (infantile spasms) and we > went to the ER for tests. She had been developing normally till > that point but then everything stopped. Over the next year we were > in and out of the hospital 7 times, spending a total of 2 1/2 months > there and she had 2 surgeries (got a vagal nerve implant for > seizures and a g-tube for feeding) We tried 4 different meds for > seizure control with varied improvment and side effects but no > control. A year ago thanksgiving began to cry and laugh. > Last July she began holding and feeding herself her bottled formula > and we now only use the g-tube for her meds. She has about 7-9 > months old deveopmemt but is blossoming this year even though we > were originally told she had a slim chance of living past age 3. > She uses a stander on occassion and just began bearing weight over > the summer and rolling all over to get around. her coordination is > continually increasing as is her muscle tone, though she still wont > eat by mouth accept for her bottle. We started giving a > nutrition supplement called Reliv in May and have seen continued > impovment since with alertness, awarness and interest in her > surroundings. And we have work all the way up to her getting on all > 4s on christmas day (so now her hair is starting to finally grow > back on hte back of her head) and just this last week she started > getting into a w-sit on her own and can now hold the position while > playing with a toy for a few minutes. She is currently taking > Vigabatrin and Ativan and we just added Keppra for her seizures > which are now anywhere from 0-about 6 a day and they vary in type > now too. > > thanks for reading, > , mom to age 3 w/pmg and epilepsy and Tucker age 14 > months, typical development > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 sounds quite similar to , age 9 this past November. also prefers people over toys, is more social than anything. And is inconsistent with switches and toys. Some days he has a 90% rate of accuracy in choice making on his talking device... but other days, well... its like he is in a void somewhere. He does not walk, stand, sit... but does have a stander, and a HART walker (which is an amazing and unique piece of walking equipment) there are some pictures of him in on the group web site... Muscle tone seems to stay static...although, has 2 hours of individual PT, 2 hours of individual OT and one hour of speech. He has had botox in the past for spastisity in the hamstrings...and it helps. His hips, at age 7...became dysplasic...and out of their sockets almost... required bi lateral hip osteotomies (they break the femur, reset the hip socket with plates and pins) it was a horrible surgery, but the results have been satisfactory. He does have a better sit base, although his scissoring is still pretty intense. We absolutely 100% refuse to mainstream him... reasons are many, we have found a program with more a medical model, (we are in CT) that has its own PT, OT, SPEECH, and two nurses on staff. They completely focus on number one...the health and state of the child...and also the specific and unique abilities and quirks of each child. would be a distraction in a regular classroom, and his inconsistencies difficult. He also could end up in the hospital from an illness that for a regular child is mild. The nurses in his school are kind, and G tube feeds, vomitting, diapering...is handled with dignity and extreme care of cleanliness. The regular school system could not give him the appropriate time and therapy and didnt have the assistive technology expert coming in once a week. loves school..he has a one to one at all times, and more often has two people working with him. There are 7 children in the school currently... Some people dont agree with us that we put him in a medical model as opposed to a normal school classroom... but is very social, and has two normal siblings, attends church, and has peer intervention at his school. His program, is one where being in a wheel chair, with multiple medical issues is a commonality, and the love there is.....like... well, I guess really beyond words. The bottom line was the school system realized that , and the others there... couldnt have all of their specific medical and therapy needs met without compromise....and they agreed to actually bring this program in house into our town's 5/6 school. I find it exceptional to be able to consult every day in a focused environment with the therapists and consultants. They have clinics for equipment and feeding specialists that come in. Its really great, and when someone breaks out in a seizure, or vomits, chokes, needs suction, or oxygen (one child has a trach tube).... then they handle it immediately. We have a nurse that rides the bus with the children as well.... seems to be worsening in terms of his muscle strength as well... we were making progress, and suddenly much of the progress went away.. like his ability to swallow. It is completely gone...he can not swallow and protect his airway... So, hearing about ...sounded similar in many respects to . does have exceptional vision though.... and absolutely LOVES the girls.... he is a giggler, and has the most beautiful expressions. There are " " fans all over Newtown!!! So much to share... but here is the kicker... life with this child is a life on the brink of pure bliss or trauma. This past monday morning... he woke up crying, and had a fever of 104... his legs were shaking in what looked like a seizure..but he was not taking full breaths.. We had to call the ambulance, thinking that maybe something had happened with the stomach surgery he had a few weeks ago. I kissed the other two kids goodbye, my husband fixed a bag, and when the ambulance got here...I had put him on our home oxygen...they said that was a good thing. He had a high high white count, and a few spots on the chest ex ray. He aspirated, probably in his sleep. They ran some major IV fluids, and antibiotics. By 6:00PM, he was giggling again, and maintaining a great oxygen level on room air. We went home. It is what I refer to as the strengthening of our " bounce back factor " ... we have been going through this type of situation for 9 years now.... there has never been more than a month or two without some major issues rearing its head. But you learn, you grow, and you understand your child...and bouncing back into happiness is a skill that helps keep your quality of life great, amidst all of the challenges. I think he aspirated slightly again last night, is quite congested...but we run nebulizers, do chest pt, and have oxygen ready at all times. And somehow, we have normal family activities just like everyone else.. Love you all.... , Mom to Dan age 9.... Sandy Hook, CT srgnbuc wrote: , age 6 on Feb. 22nd, and diagnosed PMG at age 4 months. Diagnosis was very shocking since he was 6 weeks premature and we just thought he was a little delayed. He was very unpredictable, and thought he had colic. Doc ordered skull xray, MRI and EEG due to small head size and neck arching. Found PMG through the MRI and EEG ruled out infantile spasms that they thought was the neck arching. Neck arching was due to reflux which gradually went away. Medical issues: Seizures started at age 2, so he's been on Topamax ever since with good results. Still has breakthrough seizures when ill. He's been in OT, PT and speech since 6 months. No meds have helped with muscle tone which has been worsening over the last year. He used to use a stander but high tone in legs has made it painful for him. Has had 3 eye muscle surgeries to correct misalignment. Now wears glasses and vision seems much better. Will be 2 years in April that he's had a wheelchair for mobility. Milestones: Other than smiling, he hasn't truly reached any milestone. He doesn't hold his head up for longer than 90 seconds. On his tummy, he can move in a circle but doesn't go anywhere. (I consider this a small blessing actually.) He can eat by swallowing thickened liquids and purees through a feeder bottle. Is currently about 33 lbs, and we are considering a feeding tube mainly for meds so we can start concentrating on spoon and straw feeding without the worry of not getting medication by mouth. Abilities: He actually has decent fine motor grasp but lacks gross motor strength. He can grasp the string of a balloon or the stem of a leaf on purpose. He isn't strong enough to hold anything larger than a pencil. He is inconsistent in using switches and is non- verbal. He definitely knows who his favorite people are and is more social than anything. He'd rather see people than toys. He loves physical contact, and sometimes the rougher the better (riding 4- wheelers and horses). He has a new " girlfriend " every year at preschool and is well-liked by everyone. We are getting ready to transition to elementary school after holding him back last year. Our school district isn't really equipped although they all keep saying, mainstream is still an option. I just don't think he'll get anything out of a regular classroom. His IEP is Tuesday and we'll be touring some other surrounding districts and hope to have a plan in place by April or May for the fall. It's still hard to believe that he's six years old. His older brother (age 9) and younger sister (almost 5) are true angels, watching out for him and loving him. My husband is a Firefighter/Paramedic which really helps. We're in Ohio. > > I am curious about the age and abilities of your child as I have > never met another parentof or child with pmg. I know that abilites > and additional conditions vary so much from kid to kid. Will you > share for the insite and encouragment of the rest of us. > > > My daughter is now 3 1/2 was diagnosed with pmg at 4 1/2 > months when she started having seizures (infantile spasms) and we > went to the ER for tests. She had been developing normally till > that point but then everything stopped. Over the next year we were > in and out of the hospital 7 times, spending a total of 2 1/2 months > there and she had 2 surgeries (got a vagal nerve implant for > seizures and a g-tube for feeding) We tried 4 different meds for > seizure control with varied improvment and side effects but no > control. A year ago thanksgiving began to cry and laugh. > Last July she began holding and feeding herself her bottled formula > and we now only use the g-tube for her meds. She has about 7-9 > months old deveopmemt but is blossoming this year even though we > were originally told she had a slim chance of living past age 3. > She uses a stander on occassion and just began bearing weight over > the summer and rolling all over to get around. her coordination is > continually increasing as is her muscle tone, though she still wont > eat by mouth accept for her bottle. We started giving a > nutrition supplement called Reliv in May and have seen continued > impovment since with alertness, awarness and interest in her > surroundings. And we have work all the way up to her getting on all > 4s on christmas day (so now her hair is starting to finally grow > back on hte back of her head) and just this last week she started > getting into a w-sit on her own and can now hold the position while > playing with a toy for a few minutes. She is currently taking > Vigabatrin and Ativan and we just added Keppra for her seizures > which are now anywhere from 0-about 6 a day and they vary in type > now too. > > thanks for reading, > , mom to age 3 w/pmg and epilepsy and Tucker age 14 > months, typical development > Ann Hasselberger District Leader Primerica Financial Services 1 (203)788-9602 jhasselberger@... www.primerica.com www.citigroup.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 Hi , It does make it easier to hear other people's journeys. I get on here once in a while...especially when I'm in a tough time...and it is therapeutic to share. has been in a stander since he was one...has had several now.. but the most effective piece of equipment has been his HART walker. It completely supports the child in a brace like apparatus, but using bungies it allows them to learn to step with reciprocal training...while being 100% fully weight bearing. can not stand or sit... but in his walker, he can run and have independence. He loves it. As a matter of fact, he needs to go into it this evening. Take care, .. Mom to (11), (9), and (6) carrie_and_kids wrote: Quinn is 13 mos, started solids (stage two fruits and veggies, cereal) the first week of Jan. He doesn't sit, but likes to stand, supported, so we'll be looking into a stander soon. He babbles and coos, fairly often appropriately ( " Go " being his favorite, but also " aye " or " hi " occasionally, sometimes " no " , rarely two-syllable sounds that sound like " thank you " or " all done " --working on signing with him mostly for something to do for his motor issues), which has led his therapists to think that his initial prognosis of severe MR is not exactly accurate. He has three different types of hand splints and will soon be fitted for foot/ankle splints. He actually had much higher, functional tone before he was, say four months. I have a picture of him sitting up with my hands waiting to catch him at about 2 1/2 mos. He used to roll front to back, but does it very rarely now. He developed seizures at about 6 mos? I can't remember exactly. He takes Trileptal for the seizures (neuro suspected but ruled out infantile spasms), experiencing rare breakthrough seizures. He also takes Prevacid for acid reflux, this has been very effective. My concerns for him are: his vision is 20/80 at best, his right eye is reluctant to cross the mid-line. He's easily overwhelmed by chaotic sound, but loves music, esp to play at the piano. (smiles) His digestion is sluggish and he doesn't seem to process the solids (even as soft and slurpy as they are) very easily. As he grows, it will be harder (of course) to lift him. He's 23 lbs now, but as he gets bigger, he'll require a variety of chairs/equipment. I think I'm reaching the point where a custom van and single story house will be necessary. I've already had some significant back pain, so. . . The big excitement for the week is that he drank from a sippy cup really well for the first time! The subsequent attempts haven't been as successful, but whatever. We're happy dancing anyway! Not sure if this is what you're after, but thanks for listening. I'm always glad to hear about other parents' journeys/experiences--it makes it all somehow easier, you know? (too, heh), mom to G (11), E (9), K (6), S (4) (all more or less neurotypical), and Quinn, 13 mos. ??? (still awaiting Dr. Dobyns' opinion) Ann Hasselberger District Leader Primerica Financial Services 1 (203)788-9602 jhasselberger@... www.primerica.com www.citigroup.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 Hi , It does make it easier to hear other people's journeys. I get on here once in a while...especially when I'm in a tough time...and it is therapeutic to share. has been in a stander since he was one...has had several now.. but the most effective piece of equipment has been his HART walker. It completely supports the child in a brace like apparatus, but using bungies it allows them to learn to step with reciprocal training...while being 100% fully weight bearing. can not stand or sit... but in his walker, he can run and have independence. He loves it. As a matter of fact, he needs to go into it this evening. Take care, .. Mom to (11), (9), and (6) carrie_and_kids wrote: Quinn is 13 mos, started solids (stage two fruits and veggies, cereal) the first week of Jan. He doesn't sit, but likes to stand, supported, so we'll be looking into a stander soon. He babbles and coos, fairly often appropriately ( " Go " being his favorite, but also " aye " or " hi " occasionally, sometimes " no " , rarely two-syllable sounds that sound like " thank you " or " all done " --working on signing with him mostly for something to do for his motor issues), which has led his therapists to think that his initial prognosis of severe MR is not exactly accurate. He has three different types of hand splints and will soon be fitted for foot/ankle splints. He actually had much higher, functional tone before he was, say four months. I have a picture of him sitting up with my hands waiting to catch him at about 2 1/2 mos. He used to roll front to back, but does it very rarely now. He developed seizures at about 6 mos? I can't remember exactly. He takes Trileptal for the seizures (neuro suspected but ruled out infantile spasms), experiencing rare breakthrough seizures. He also takes Prevacid for acid reflux, this has been very effective. My concerns for him are: his vision is 20/80 at best, his right eye is reluctant to cross the mid-line. He's easily overwhelmed by chaotic sound, but loves music, esp to play at the piano. (smiles) His digestion is sluggish and he doesn't seem to process the solids (even as soft and slurpy as they are) very easily. As he grows, it will be harder (of course) to lift him. He's 23 lbs now, but as he gets bigger, he'll require a variety of chairs/equipment. I think I'm reaching the point where a custom van and single story house will be necessary. I've already had some significant back pain, so. . . The big excitement for the week is that he drank from a sippy cup really well for the first time! The subsequent attempts haven't been as successful, but whatever. We're happy dancing anyway! Not sure if this is what you're after, but thanks for listening. I'm always glad to hear about other parents' journeys/experiences--it makes it all somehow easier, you know? (too, heh), mom to G (11), E (9), K (6), S (4) (all more or less neurotypical), and Quinn, 13 mos. ??? (still awaiting Dr. Dobyns' opinion) Ann Hasselberger District Leader Primerica Financial Services 1 (203)788-9602 jhasselberger@... www.primerica.com www.citigroup.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 Hi , It does make it easier to hear other people's journeys. I get on here once in a while...especially when I'm in a tough time...and it is therapeutic to share. has been in a stander since he was one...has had several now.. but the most effective piece of equipment has been his HART walker. It completely supports the child in a brace like apparatus, but using bungies it allows them to learn to step with reciprocal training...while being 100% fully weight bearing. can not stand or sit... but in his walker, he can run and have independence. He loves it. As a matter of fact, he needs to go into it this evening. Take care, .. Mom to (11), (9), and (6) carrie_and_kids wrote: Quinn is 13 mos, started solids (stage two fruits and veggies, cereal) the first week of Jan. He doesn't sit, but likes to stand, supported, so we'll be looking into a stander soon. He babbles and coos, fairly often appropriately ( " Go " being his favorite, but also " aye " or " hi " occasionally, sometimes " no " , rarely two-syllable sounds that sound like " thank you " or " all done " --working on signing with him mostly for something to do for his motor issues), which has led his therapists to think that his initial prognosis of severe MR is not exactly accurate. He has three different types of hand splints and will soon be fitted for foot/ankle splints. He actually had much higher, functional tone before he was, say four months. I have a picture of him sitting up with my hands waiting to catch him at about 2 1/2 mos. He used to roll front to back, but does it very rarely now. He developed seizures at about 6 mos? I can't remember exactly. He takes Trileptal for the seizures (neuro suspected but ruled out infantile spasms), experiencing rare breakthrough seizures. He also takes Prevacid for acid reflux, this has been very effective. My concerns for him are: his vision is 20/80 at best, his right eye is reluctant to cross the mid-line. He's easily overwhelmed by chaotic sound, but loves music, esp to play at the piano. (smiles) His digestion is sluggish and he doesn't seem to process the solids (even as soft and slurpy as they are) very easily. As he grows, it will be harder (of course) to lift him. He's 23 lbs now, but as he gets bigger, he'll require a variety of chairs/equipment. I think I'm reaching the point where a custom van and single story house will be necessary. I've already had some significant back pain, so. . . The big excitement for the week is that he drank from a sippy cup really well for the first time! The subsequent attempts haven't been as successful, but whatever. We're happy dancing anyway! Not sure if this is what you're after, but thanks for listening. I'm always glad to hear about other parents' journeys/experiences--it makes it all somehow easier, you know? (too, heh), mom to G (11), E (9), K (6), S (4) (all more or less neurotypical), and Quinn, 13 mos. ??? (still awaiting Dr. Dobyns' opinion) Ann Hasselberger District Leader Primerica Financial Services 1 (203)788-9602 jhasselberger@... www.primerica.com www.citigroup.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2007 Report Share Posted February 19, 2007 , I have heard about this Reliv. Someone that I know uses it & sells it online. Do you think tht it is really helping ? I am at the point that I'm willing to try anything if it will help Crystal to progress further. Any info you can give me on this would be greatly appreciated. Love to all... & my Angel girl, Crystal Aquielle - almost 9 years old > I am curious about the age and abilities of your child as I have > never met another parentof or child with pmg. I know that abilites > and additional conditions vary so much from kid to kid. Will you > share for the insite and encouragment of the rest of us. > > My daughter is now 3 1/2 was diagnosed with pmg at 4 1/2 > months when she started having seizures (infantile spasms) and we > went to the ER for tests. She had been developing normally till > that point but then everything stopped. Over the next year we were > in and out of the hospital 7 times, spending a total of 2 1/2 months > there and she had 2 surgeries (got a vagal nerve implant for > seizures and a g-tube for feeding) We tried 4 different meds for > seizure control with varied improvment and side effects but no > control. A year ago thanksgiving began to cry and laugh. > Last July she began holding and feeding herself her bottled formula > and we now only use the g-tube for her meds. She has about 7-9 > months old deveopmemt but is blossoming this year even though we > were originally told she had a slim chance of living past age 3. > She uses a stander on occassion and just began bearing weight over > the summer and rolling all over to get around. her coordination is > continually increasing as is her muscle tone, though she still wont > eat by mouth accept for her bottle. We started giving a > nutrition supplement called Reliv in May and have seen continued > impovment since with alertness, awarness and interest in her > surroundings. And we have work all the way up to her getting on all > 4s on christmas day (so now her hair is starting to finally grow > back on hte back of her head) and just this last week she started > getting into a w-sit on her own and can now hold the position while > playing with a toy for a few minutes. She is currently taking > Vigabatrin and Ativan and we just added Keppra for her seizures > which are now anywhere from 0-about 6 a day and they vary in type > now too. > > thanks for reading, > , mom to age 3 w/pmg and epilepsy and Tucker age 14 > months, typical development > > > > > > > --------------------------------- > TV dinner still cooling? > Check out " Tonight's Picks " on Yahoo! TV. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2007 Report Share Posted February 19, 2007 , I have heard about this Reliv. Someone that I know uses it & sells it online. Do you think tht it is really helping ? I am at the point that I'm willing to try anything if it will help Crystal to progress further. Any info you can give me on this would be greatly appreciated. Love to all... & my Angel girl, Crystal Aquielle - almost 9 years old > I am curious about the age and abilities of your child as I have > never met another parentof or child with pmg. I know that abilites > and additional conditions vary so much from kid to kid. Will you > share for the insite and encouragment of the rest of us. > > My daughter is now 3 1/2 was diagnosed with pmg at 4 1/2 > months when she started having seizures (infantile spasms) and we > went to the ER for tests. She had been developing normally till > that point but then everything stopped. Over the next year we were > in and out of the hospital 7 times, spending a total of 2 1/2 months > there and she had 2 surgeries (got a vagal nerve implant for > seizures and a g-tube for feeding) We tried 4 different meds for > seizure control with varied improvment and side effects but no > control. A year ago thanksgiving began to cry and laugh. > Last July she began holding and feeding herself her bottled formula > and we now only use the g-tube for her meds. She has about 7-9 > months old deveopmemt but is blossoming this year even though we > were originally told she had a slim chance of living past age 3. > She uses a stander on occassion and just began bearing weight over > the summer and rolling all over to get around. her coordination is > continually increasing as is her muscle tone, though she still wont > eat by mouth accept for her bottle. We started giving a > nutrition supplement called Reliv in May and have seen continued > impovment since with alertness, awarness and interest in her > surroundings. And we have work all the way up to her getting on all > 4s on christmas day (so now her hair is starting to finally grow > back on hte back of her head) and just this last week she started > getting into a w-sit on her own and can now hold the position while > playing with a toy for a few minutes. She is currently taking > Vigabatrin and Ativan and we just added Keppra for her seizures > which are now anywhere from 0-about 6 a day and they vary in type > now too. > > thanks for reading, > , mom to age 3 w/pmg and epilepsy and Tucker age 14 > months, typical development > > > > > > > --------------------------------- > TV dinner still cooling? > Check out " Tonight's Picks " on Yahoo! TV. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2007 Report Share Posted February 20, 2007 How old was when he started using the walker? I have a stander for Mason, he's 2, but he doesn't bare any weight, he uses moffos (braces on his legs) when he goes in the stander. Do you think that this walker would work since Mason doesn't hold his head up yet. Just wondering, it sounds like its working great for your son. Chrissy Mason's Mom (BF polymicrogryia, cortical vision impairment, seizure disorder) > Quinn is 13 mos, started solids (stage two fruits and veggies, > cereal) the first week of Jan. He doesn't sit, but likes to stand, > supported, so we'll be looking into a stander soon. He babbles and > coos, fairly often appropriately ( " Go " being his favorite, but > also " aye " or " hi " occasionally, sometimes " no " , rarely two- syllable > sounds that sound like " thank you " or " all done " --working on signing > with him mostly for something to do for his motor issues), which has > led his therapists to think that his initial prognosis of severe MR > is not exactly accurate. He has three different types of hand > splints and will soon be fitted for foot/ankle splints. > > He actually had much higher, functional tone before he was, say four > months. I have a picture of him sitting up with my hands waiting to > catch him at about 2 1/2 mos. He used to roll front to back, but > does it very rarely now. > > He developed seizures at about 6 mos? I can't remember exactly. He > takes Trileptal for the seizures (neuro suspected but ruled out > infantile spasms), experiencing rare breakthrough seizures. He also > takes Prevacid for acid reflux, this has been very effective. > > My concerns for him are: his vision is 20/80 at best, his right eye > is reluctant to cross the mid-line. He's easily overwhelmed by > chaotic sound, but loves music, esp to play at the piano. (smiles) > His digestion is sluggish and he doesn't seem to process the solids > (even as soft and slurpy as they are) very easily. As he grows, it > will be harder (of course) to lift him. He's 23 lbs now, but as he > gets bigger, he'll require a variety of chairs/equipment. > > I think I'm reaching the point where a custom van and single story > house will be necessary. I've already had some significant back > pain, so. . . > > The big excitement for the week is that he drank from a sippy cup > really well for the first time! The subsequent attempts haven't been > as successful, but whatever. We're happy dancing anyway! > > Not sure if this is what you're after, but thanks for listening. I'm > always glad to hear about other parents' journeys/experiences--it > makes it all somehow easier, you know? > > (too, heh), > mom to G (11), E (9), K (6), S (4) (all more or less neurotypical), > and Quinn, 13 mos. ??? (still awaiting Dr. Dobyns' opinion) > > > > > > > > > Ann Hasselberger > District Leader > > > > Primerica Financial Services > 1 (203)788-9602 > jhasselberger@... > > > www.primerica.com > > www.citigroup.com > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2007 Report Share Posted February 20, 2007 got his HART walker when he was 5.. that was when we first learned about them. I know there are other children with weaker head control that have them.. it is really a pretty amazing thing to see.. because it gives them independent mobility. I know that the HART walker is distributed out of Canada.. but we have a local guy who started his own franchise here in Connecticut. They do clinics every weekend to evaluate kids.. You can contact him directly, the name of his company is " Great Strides " 203 272-7862 in Cheshire CT... brayceco@... Olin is his name ( he is a fabulous guy, also an expert in making othotics) You may be able to find info online about the HART walker.. but truly there is nothing else we saw from any catalogs or companies as unique as this... only took little steps at first... but now he walks great. We know another little boy who has graduated from a 4 wheel base down to a 2 wheel base.. it teaches them balance as well. I always believed that would walk...and even though he isnt likely to walk without assistance, he can walk. Which is great. Main problem I think, is that insurance doesnt usually pay... its a battle..because it is expensive, it was $6000 when we got ours 4 years ago. We took a second mortgage and figured it out. Let me know if you contact , and what he says.. masonsmom1222 wrote: How old was when he started using the walker? I have a stander for Mason, he's 2, but he doesn't bare any weight, he uses moffos (braces on his legs) when he goes in the stander. Do you think that this walker would work since Mason doesn't hold his head up yet. Just wondering, it sounds like its working great for your son. Chrissy Mason's Mom (BF polymicrogryia, cortical vision impairment, seizure disorder) > Quinn is 13 mos, started solids (stage two fruits and veggies, > cereal) the first week of Jan. He doesn't sit, but likes to stand, > supported, so we'll be looking into a stander soon. He babbles and > coos, fairly often appropriately ( " Go " being his favorite, but > also " aye " or " hi " occasionally, sometimes " no " , rarely two- syllable > sounds that sound like " thank you " or " all done " --working on signing > with him mostly for something to do for his motor issues), which has > led his therapists to think that his initial prognosis of severe MR > is not exactly accurate. He has three different types of hand > splints and will soon be fitted for foot/ankle splints. > > He actually had much higher, functional tone before he was, say four > months. I have a picture of him sitting up with my hands waiting to > catch him at about 2 1/2 mos. He used to roll front to back, but > does it very rarely now. > > He developed seizures at about 6 mos? I can't remember exactly. He > takes Trileptal for the seizures (neuro suspected but ruled out > infantile spasms), experiencing rare breakthrough seizures. He also > takes Prevacid for acid reflux, this has been very effective. > > My concerns for him are: his vision is 20/80 at best, his right eye > is reluctant to cross the mid-line. He's easily overwhelmed by > chaotic sound, but loves music, esp to play at the piano. (smiles) > His digestion is sluggish and he doesn't seem to process the solids > (even as soft and slurpy as they are) very easily. As he grows, it > will be harder (of course) to lift him. He's 23 lbs now, but as he > gets bigger, he'll require a variety of chairs/equipment. > > I think I'm reaching the point where a custom van and single story > house will be necessary. I've already had some significant back > pain, so. . . > > The big excitement for the week is that he drank from a sippy cup > really well for the first time! The subsequent attempts haven't been > as successful, but whatever. We're happy dancing anyway! > > Not sure if this is what you're after, but thanks for listening. I'm > always glad to hear about other parents' journeys/experiences--it > makes it all somehow easier, you know? > > (too, heh), > mom to G (11), E (9), K (6), S (4) (all more or less neurotypical), > and Quinn, 13 mos. ??? (still awaiting Dr. Dobyns' opinion) > > > > > > > > > Ann Hasselberger > District Leader > > > > Primerica Financial Services > 1 (203)788-9602 > jhasselberger@... > > > www.primerica.com > > www.citigroup.com > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 Hi, I wanted to share our story as well. is 13 months and we found out about him having pmg when he was 11 months old. He is the most happy little boy you can imagine. He laughs and smiles and enjoys life as long as he is not in any pain! When was 2,5 months we couldn't comfort him. He was in a lot of pain, and we found out that he had severe case of reflux. got the broad diagnosis of " failure to thrive " , since he didn't grow during 2 months time. The doctors didn't know what to think, but at 4 months it was clear that aspirated and he had g-tube and nissen surgery. Our lives changed positively as could start growing again! He also was diagnosed with hypoplasia of corpus callosum at this time and we went through endless tests for metabolic and genetic disorders - without no positive results. When was about 6 months he started throwing up regularly and we realized that his nissen surgery had failed. had it redone and recovered quickly! In October, passed his modified swallowing study and we could start feeding him by mouth - that was a great step in the right direction for him! He has also been doing slow but steady progress in his therapies. His head control has greatly improved and he can sit up with support. He grasps after objects and loves chewing on his toys! Right after his 1st birthday, went through a sleep study. We got admitted to the hospital in the morning. He was diagnosed with sleep apnea and also had his first seizure during the sleep study! The following day he had an additional 4 seizures. It was very scary! He is now on phenobarbital to prevent the seizures. He has had no more seizures, but his muscle tone has taken a step back. He is also on oxygen when he sleeps. At the same time he also had RSV and a urinary tract infection. Here is a little video clip I put together right before Christmas last year. Take a look: http://www.onetruemedia.com/shared?p=1c6f1484e622456cfc954f & skin_id=0 & & utm_sourc\ e=otm & utm_medium=text_url > > I am curious about the age and abilities of your child as I have > never met another parentof or child with pmg. I know that abilites > and additional conditions vary so much from kid to kid. Will you > share for the insite and encouragment of the rest of us. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2007 Report Share Posted March 1, 2007 Your children are both beautiful. Thanks so much for sharing that with us. Chris > > > > I am curious about the age and abilities of your child as I have > > never met another parentof or child with pmg. I know that abilites > > and additional conditions vary so much from kid to kid. Will you > > share for the insite and encouragment of the rest of us. > > > > > > > Quote Link to comment Share on other sites More sharing options...
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