Guest guest Posted March 11, 2012 Report Share Posted March 11, 2012 Hi Chloe  It was interesting to read your post about your daughter. She sounds alot like my daughter Scarlett who is 4 years old and on the severe end of the spectrum. She too was not picked up on by doctors, although I had concerns right from the beginning. Her seizures started at 5 months when our concerns were finally listened too. We live in Sussex and I have two other children, 8 and 18 months both healthy. There are not too many of us about in the uk. Take care Lou ________________________________ To: polymicrogyria Sent: Sunday, 11 March 2012, 18:08 Subject: Progess  I have followed with interest posts regarding milestones and achievements. I have been a member of this group for near on 10 years now, but although I have not posted myself for sometime, I do read all the postings. (except US specific topics: I am in the UK) My daughter is now 10+ years old and this is her story. Dates and ages are approximate as I have written from memory, there is too much on file to read through! Chloe is our fifth child and was born with an uneventful birth, at a weight of 7lbs 10oz She presented no signs of any problems either during pregnancy or after she was born (Other than she has a small head (microcephaly) but this was not pointed out until after problems were noticed. Why the doctor did not pick up on this we don't know). At around 4 months of age we noted she had made no attempt to sit up or reach out at objects. She was however, very responsive to smiles and sounds as would be expected. Eye sight and hearing apparently normal. It took a couple of months to get a diagnosis once we had persuaded our health visitor there was a problem. She was initially diagnosed with Pachygyria, later to be changed to diffuse bilateral polymicrogyria. As mentioned, she has a small head (microcephaly) but this was not pointed out until after problems were noticed. It all came as quite a shock. Her up to date diagnosis is: 1. Cerebral palsy with four limb disorder secondary to Polymicrogyria associated with Microcephaly. 2. Severe development delay. 3. Epilepsy with generalised and partial seizures. 4. Gastrostomy MIC-KEY for all feeds. 5. Precocious Puberty 6. Very low bone density / paediatric osteoporosis 10+ years on and she is still unable to sit up, walk, talk, communicate, reach out or hold anything. At approx. 2 years she had operations on her hips at correct dislocation. Whether its due to the ops or not, she now has one leg larger than the other. The operations were to break and rotate her thigh bone to engage the hip joints. At approx. 3 years she had her first seizure. It took some time (years) to find the right mix of meds, but she is fairly well controlled now (Lamotrigine and Topirimate with Buccal Midazalam for prolonged seizures + Clobozam for clusters) Because of failure to thrive we reluctantly agreed to a G Tube at the age of approx 4. This was un-doubtfully the best decision we made. She is now exclusively tube fed due to possible aspiration. At approx 7 years of age she showed early signs of puberty and now has regular injections to halt the process until she is older. 2 years ago she had a short seizure whilst seated in her wheel chair (which is not at all uncommon) but the pure strength of the contractions broke her thigh bone due to osteoporsis. This led to her having a series of infusions to stengthen her bones. Her main problems now are postural. And her severe learning disorder. For us it is handling, changing pads (she weighs 36kg (80lbs?)) and mopping up saliva. She remains a happy, smiley girl, despite everything. She always has the biggest smile for me when I enter the room. Reading other peoples posts, I am sure Chloe is at the more severe end of the spetrum, however in the first few months of life we did not even suspect a problem. Just to top it all, our third grand child has been diganosed with -Lemli-Opitz Syndrome, and our expected fifth grandchild (due in May) has a club foot and (slighty) short limbs. Yet none of these conditions are medically related. Oh, car seats: Chloe had a rear facing seat until she out grew it at approx 7 years old, now we have a Wheel Chair Accessble VW Multivan. (VW Caravelle here in the UK) Dom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2012 Report Share Posted March 11, 2012 Dom: Your daughter Chloe sounds much like my granddaughter, Lindsey except that she is still fed orally. She is almost 11 years old. I don't post very often either but I can very much relate to your story. Myself and the other grandmother care for Lindsey 2 -3 days/week while her mother and father work. And...she's getting so heavy (60 pounds) we can hardly lift her!! The only sign we had before she was born was that her mother only weighed 110 pounds when she got pregnant and weighed 190 when she delivered. We knew but the doctor insisted we were wrong. My daughter had untreated hypertension throughout. At her ob visits, the doctor would tell my daughter to just lay on her side and if the blood pressure reading came down, she could go home which she did. We now know she had poly-hydrogenous (too much amniotic fluid.) Lindsey was born 6 weeks early due to the fact that when the doctor did an amniocentesis her water broke. The rest is history. Lindsey was diagnosed at 1 year old. We had an idea that something was wrong because she didn't sit, crawl or make baby noises. Missed her milestones I guess. She too is diagnosed with microcephaly (small head) We believe that if the doctor had delivered her even a little earlier and was allowed to develop in the incubator, her disabilities wouldn't have been as severe. The doctor was adiment that she could not be delivered early but then when my daughter's water broke she had no choice.  Lindsey does although hear and see well and is very responsive to all of her surroundings She's happy and has a smile on her face most of the time. She loves to cuddle, snuggle and tickle. Oh and most of all.....she loves to play dolls which I have to dress and pretend they talk. If you could only see how silly I look!! If you did, you'd be calling the white paddy wagon to come and take me away!!!! ; ) The speech therapist took pictures of all the outfits the dolls wear and uploaded them to the I pad. Now we opens the i pad and she points to what she wants her doll to wear. Lindsey can't even hold a crayon but she sure can isolate her little index finger and navigate the I-pad to color. What a blessing that is!!!! It just blows me away to watch. Only because she can do so little in life but she knows (I don't) all the icons and how to change everything on it. She navigates her way through the programs like a whiz!! Her diagnosis is: Microcephaly/ diffuse bilateral polymicrogyria/ CP secondary to polymicrogyria affecting both legs and arms. She too has severe development delay. Grand Mal seizures. They started when she was about 8. She's has had about 15 to date. Lindsey has been seizure free for 14 months. She is treated with Keppra for that. We have been told by the ped neurologist that usually when a child goes 2 years without a seizure they remove them from the meds. Worst thing being that she has a seizure and is put back on.  The PT that Lindsey sees told us a month ago, that she would probably have to have something like you mentioned with her hips. Just last week she had an appointment at Ortho Children's Memorial in Chicago. This doctor said no leg/hip surgery is needed but rather Botox treatments to loosen the muscles. Insurance has already approved it. Now her parents have to decide whether to go with it. He said that sometimes it is a little painful but less than the surgery. Anyone have experience with Botox therapy? Sorry for making this so long. I had no intention of telling Lindsey's entire story but rather to say that Lindsey was much like Dom. Blessings to you, Dom and to all the wonderful people on this site! True heroes!!! Bonnie (grandmother to Lindsey 10 years old)  Bonnie >________________________________ > >To: polymicrogyria >Sent: Sunday, March 11, 2012 1:08 PM >Subject: Progess > > > >I have followed with interest posts regarding milestones and achievements. I have been a member of this group for near on 10 years now, but although I have not posted myself for sometime, I do read all the postings. (except US specific topics: I am in the UK) > >My daughter is now 10+ years old and this is her story. Dates and ages are approximate as I have written from memory, there is too much on file to read through! >Chloe is our fifth child and was born with an uneventful birth, at a weight of 7lbs 10oz >She presented no signs of any problems either during pregnancy or after she was born (Other than she has a small head (microcephaly) but this was not pointed out until after problems were noticed. Why the doctor did not pick up on this we don't know). > >At around 4 months of age we noted she had made no attempt to sit up or reach out at objects. She was however, very responsive to smiles and sounds as would be expected. Eye sight and hearing apparently normal. >It took a couple of months to get a diagnosis once we had persuaded our health visitor there was a problem. >She was initially diagnosed with Pachygyria, later to be changed to diffuse bilateral polymicrogyria. As mentioned, she has a small head (microcephaly) but this was not pointed out until after problems were noticed. It all came as quite a shock. > >Her up to date diagnosis is: >1. Cerebral palsy with four limb disorder secondary to Polymicrogyria associated with Microcephaly. >2. Severe development delay. >3. Epilepsy with generalised and partial seizures. >4. Gastrostomy MIC-KEY for all feeds. >5. Precocious Puberty >6. Very low bone density / paediatric osteoporosis > >10+ years on and she is still unable to sit up, walk, talk, communicate, reach out or hold anything. >At approx. 2 years she had operations on her hips at correct dislocation. Whether its due to the ops or not, she now has one leg larger than the other. The operations were to break and rotate her thigh bone to engage the hip joints. >At approx. 3 years she had her first seizure. It took some time (years) to find the right mix of meds, but she is fairly well controlled now (Lamotrigine and Topirimate with BuccalMidazalam for prolonged seizures + Clobozam for clusters) >Because of failure to thrive we reluctantly agreed to a G Tube at the age of approx 4. This was un-doubtfully the best decision we made. She is now exclusively tube fed due to possible aspiration. >At approx 7 years of age she showed early signs of puberty and now has regular injections to halt the process until she is older. >2 years ago she had a short seizure whilst seated in her wheel chair (which is not at all uncommon) but the pure strength of the contractions broke her thigh bone due to osteoporsis. This led to her having a series of infusions to stengthen her bones. > >Her main problems now are postural. And her severe learning disorder. >For us it is handling, changing pads (she weighs 36kg (80lbs?)) and mopping up saliva. > >She remains a happy, smiley girl, despite everything. She always has the biggest smile for me when I enter the room. >Reading other peoples posts, I am sure Chloe is at the more severe end of the spetrum, however in the first few months of life we did not even suspect a problem. > >Just to top it all, our third grand child has been diganosed with -Lemli-Opitz Syndrome, and our expected fifth grandchild (due in May) has a club foot and (slighty) short limbs. Yet none of these conditions are medically related. > >Oh, car seats: Chloe had a rear facing seat until she out grew it at approx 7 years old, now we have a Wheel Chair AccessbleVWMultivan. (VWCaravelle here in the UK) > >Dom > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 Hi Bonnie, Finlay (10) has had Botox in his legs in 2010 and we saw a difference for about 6 months, then the tension started building up again. Now he just had hip surgery in December and has just been released from the hospital rehab. They re-aligned both hips and re-located his knee-caps and lengthened an adductor and two other muscles. We are happy with the result of the hip surgery, but in hindsight should not have allowed the knee surgery. The rehab process was long and painful, but I believe the knees have been the biggest problem all along. The hips have healed quite well and are almost fully mobile and functioning after 3 months. The knees however are a very different story. If you can get away with botox on a regular basis, I think that is a much better option for all of you. Annelies Mum to Gregor (13), Finlay (10, BPP) and Rowan (5) Progess > > > >I have followed with interest posts regarding milestones and achievements. I have been a member of this group for near on 10 years now, but although I have not posted myself for sometime, I do read all the postings. (except US specific topics: I am in the UK) > >My daughter is now 10+ years old and this is her story. Dates and ages are approximate as I have written from memory, there is too much on file to read through! >Chloe is our fifth child and was born with an uneventful birth, at a weight of 7lbs 10oz >She presented no signs of any problems either during pregnancy or after she was born (Other than she has a small head (microcephaly) but this was not pointed out until after problems were noticed. Why the doctor did not pick up on this we don't know). > >At around 4 months of age we noted she had made no attempt to sit up or reach out at objects. She was however, very responsive to smiles and sounds as would be expected. Eye sight and hearing apparently normal. >It took a couple of months to get a diagnosis once we had persuaded our health visitor there was a problem. >She was initially diagnosed with Pachygyria, later to be changed to diffuse bilateral polymicrogyria. As mentioned, she has a small head (microcephaly) but this was not pointed out until after problems were noticed. It all came as quite a shock. > >Her up to date diagnosis is: >1. Cerebral palsy with four limb disorder secondary to Polymicrogyria associated with Microcephaly. >2. Severe development delay. >3. Epilepsy with generalised and partial seizures. >4. Gastrostomy MIC-KEY for all feeds. >5. Precocious Puberty >6. Very low bone density / paediatric osteoporosis > >10+ years on and she is still unable to sit up, walk, talk, communicate, reach out or hold anything. >At approx. 2 years she had operations on her hips at correct dislocation. Whether its due to the ops or not, she now has one leg larger than the other. The operations were to break and rotate her thigh bone to engage the hip joints. >At approx. 3 years she had her first seizure. It took some time (years) to find the right mix of meds, but she is fairly well controlled now (Lamotrigine and Topirimate with BuccalMidazalam for prolonged seizures + Clobozam for clusters) >Because of failure to thrive we reluctantly agreed to a G Tube at the age of approx 4. This was un-doubtfully the best decision we made. She is now exclusively tube fed due to possible aspiration. >At approx 7 years of age she showed early signs of puberty and now has regular injections to halt the process until she is older. >2 years ago she had a short seizure whilst seated in her wheel chair (which is not at all uncommon) but the pure strength of the contractions broke her thigh bone due to osteoporsis. This led to her having a series of infusions to stengthen her bones. > >Her main problems now are postural. And her severe learning disorder. >For us it is handling, changing pads (she weighs 36kg (80lbs?)) and mopping up saliva. > >She remains a happy, smiley girl, despite everything. She always has the biggest smile for me when I enter the room. >Reading other peoples posts, I am sure Chloe is at the more severe end of the spetrum, however in the first few months of life we did not even suspect a problem. > >Just to top it all, our third grand child has been diganosed with -Lemli-Opitz Syndrome, and our expected fifth grandchild (due in May) has a club foot and (slighty) short limbs. Yet none of these conditions are medically related. > >Oh, car seats: Chloe had a rear facing seat until she out grew it at approx 7 years old, now we have a Wheel Chair AccessbleVWMultivan. (VWCaravelle here in the UK) > >Dom > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 My son, Vann, gets Botox injections about every 20 weeks in his left arm and leg. It does loosen his muscles for a short time, but then they tighten back up. We are trying to get to a place where he doesn't need them anymore, but for now it seems like the right thing to do. I will say this...the moments he Is getting the injections are miserable. He is awake and screaming the whole time. I hate it, but I know it is helpful to him so I bear it. He doesn't have any memory of it though and has no qualms with going to see that doctor. I would say if the doctors think it will be helpful and it can help you avoid surgery, try it out. Theresa Sent from my iPhone On Mar 13, 2012, at 5:02 AM, " annelies van gysegem " wrote: > Hi Bonnie, > > Finlay (10) has had Botox in his legs in 2010 and we saw a difference for > about 6 months, then the tension started building up again. > > Now he just had hip surgery in December and has just been released from the > hospital rehab. They re-aligned both hips and re-located his knee-caps and > lengthened an adductor and two other muscles. We are happy with the result > of the hip surgery, but in hindsight should not have allowed the knee > surgery. The rehab process was long and painful, but I believe the knees > have been the biggest problem all along. The hips have healed quite well and > are almost fully mobile and functioning after 3 months. The knees however > are a very different story. > > If you can get away with botox on a regular basis, I think that is a much > better option for all of you. > > Annelies > > Mum to Gregor (13), Finlay (10, BPP) and Rowan (5) > > Progess > > > > > > > >I have followed with interest posts regarding milestones and achievements. > I have been a member of this group for near on 10 years now, but although I > have not posted myself for sometime, I do read all the postings. (except US > specific topics: I am in the UK) > > > >My daughter is now 10+ years old and this is her story. Dates and ages are > approximate as I have written from memory, there is too much on file to read > through! > >Chloe is our fifth child and was born with an uneventful birth, at a weight > of 7lbs 10oz > >She presented no signs of any problems either during pregnancy or after she > was born (Other than she has a small head (microcephaly) but this was not > pointed out until after problems were noticed. Why the doctor did not pick > up on this we don't know). > > > >At around 4 months of age we noted she had made no attempt to sit up or > reach out at objects. She was however, very responsive to smiles and sounds > as would be expected. Eye sight and hearing apparently normal. > >It took a couple of months to get a diagnosis once we had persuaded our > health visitor there was a problem. > >She was initially diagnosed with Pachygyria, later to be changed to diffuse > bilateral polymicrogyria. As mentioned, she has a small head (microcephaly) > but this was not pointed out until after problems were noticed. It all came > as quite a shock. > > > >Her up to date diagnosis is: > >1. Cerebral palsy with four limb disorder secondary to Polymicrogyria > associated with Microcephaly. > >2. Severe development delay. > >3. Epilepsy with generalised and partial seizures. > >4. Gastrostomy MIC-KEY for all feeds. > >5. Precocious Puberty > >6. Very low bone density / paediatric osteoporosis > > > >10+ years on and she is still unable to sit up, walk, talk, communicate, > reach out or hold anything. > >At approx. 2 years she had operations on her hips at correct dislocation. > Whether its due to the ops or not, she now has one leg larger than the > other. The operations were to break and rotate her thigh bone to engage the > hip joints. > >At approx. 3 years she had her first seizure. It took some time (years) to > find the right mix of meds, but she is fairly well controlled now > (Lamotrigine and Topirimate with BuccalMidazalam for prolonged seizures + > Clobozam for clusters) > >Because of failure to thrive we reluctantly agreed to a G Tube at the age > of approx 4. This was un-doubtfully the best decision we made. She is now > exclusively tube fed due to possible aspiration. > >At approx 7 years of age she showed early signs of puberty and now has > regular injections to halt the process until she is older. > >2 years ago she had a short seizure whilst seated in her wheel chair (which > is not at all uncommon) but the pure strength of the contractions broke her > thigh bone due to osteoporsis. This led to her having a series of infusions > to stengthen her bones. > > > >Her main problems now are postural. And her severe learning disorder. > >For us it is handling, changing pads (she weighs 36kg (80lbs?)) and mopping > up saliva. > > > >She remains a happy, smiley girl, despite everything. She always has the > biggest smile for me when I enter the room. > >Reading other peoples posts, I am sure Chloe is at the more severe end of > the spetrum, however in the first few months of life we did not even suspect > a problem. > > > >Just to top it all, our third grand child has been diganosed with > -Lemli-Opitz Syndrome, and our expected fifth grandchild (due in May) > has a club foot and (slighty) short limbs. Yet none of these conditions are > medically related. > > > >Oh, car seats: Chloe had a rear facing seat until she out grew it at approx > 7 years old, now we have a Wheel Chair AccessbleVWMultivan. (VWCaravelle > here in the UK) > > > >Dom > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 My son had Botox injections at 13 months of age. They sedated him and then injected him. It was a quick 2-3 hour procedure and then we went home. “I am learning all the time. The tombstone will be my diploma.†— Eartha Kitt > Hi Bonnie, > I was reading your email and they should defiantly do the Botox. My son Cameron had it done every six months to his legs and upper limbs, I find it fantastic. Hip surgery can be and is a nightmare. Unfortunately when they need it done there us no choice they need it . Botox for Cameron is a breeze in and out of hospital within a few hours. > > All the best > > Sent from adrian's work > > On Mar 12, 2012, at 12:32 PM, " Zagrovich@ yahoo.com " wrote: > > > Dom: > > Your daughter Chloe sounds much like my granddaughter, Lindsey except that she is still fed orally. She is almost 11 years old. I don't post very often either but I can very much relate to your story. Myself and the other grandmother care for Lindsey 2 -3 days/week while her mother and father work. And...she's getting so heavy (60 pounds) we can hardly lift her!! > > > > The only sign we had before she was born was that her mother only weighed 110 pounds when she got pregnant and weighed 190 when she delivered. We knew but the doctor insisted we were wrong. My daughter had untreated hypertension throughout. At her ob visits, the doctor would tell my daughter to just lay on her side and if the blood pressure reading came down, she could go home which she did. We now know she had poly-hydrogenous (too much amniotic fluid.) Lindsey was born 6 weeks early due to the fact that when the doctor did an amniocentesis her water broke. The rest is history. > > > > Lindsey was diagnosed at 1 year old. We had an idea that something was wrong because she didn't sit, crawl or make baby noises. Missed her milestones I guess. She too is diagnosed with microcephaly (small head) We believe that if the doctor had delivered her even a little earlier and was allowed to develop in the incubator, her disabilities wouldn't have been as severe. The doctor was adiment that she could not be delivered early but then when my daughter's water broke she had no choice. Lindsey does although hear and see well and is very responsive to all of her surroundings She's happy and has a smile on her face most of the time. She loves to cuddle, snuggle and tickle. Oh and most of all.....she loves to play dolls which I have to dress and pretend they talk. If you could only see how silly I look!! If you did, you'd be calling the white paddy wagon to come and take me away!!!! ; ) The speech therapist took pictures of > > all the outfits the dolls wear and uploaded them to the I pad. Now we opens the i pad and she points to what she wants her doll to wear. Lindsey can't even hold a crayon but she sure can isolate her little index finger and navigate the I-pad to color. What a blessing that is!!!! It just blows me away to watch. Only because she can do so little in life but she knows (I don't) all the icons and how to change everything on it. She navigates her way through the programs like a whiz!! > > > > Her diagnosis is: > > > > Microcephaly/ diffuse bilateral polymicrogyria/ CP secondary to polymicrogyria affecting both legs and arms. She too has severe development delay. Grand Mal seizures. They started when she was about 8. She's has had about 15 to date. Lindsey has been seizure free for 14 months. She is treated with Keppra for that. We have been told by the ped neurologist that usually when a child goes 2 years without a seizure they remove them from the meds. Worst thing being that she has a seizure and is put back on. > > > > The PT that Lindsey sees told us a month ago, that she would probably have to have something like you mentioned with her hips. Just last week she had an appointment at Ortho Children's Memorial in Chicago. This doctor said no leg/hip surgery is needed but rather Botox treatments to loosen the muscles. Insurance has already approved it. Now her parents have to decide whether to go with it. He said that sometimes it is a little painful but less than the surgery. Anyone have experience with Botox therapy? > > > > Sorry for making this so long. I had no intention of telling Lindsey's entire story but rather to say that Lindsey was much like Dom. > > Blessings to you, Dom and to all the wonderful people on this site! True heroes!!! > > > > Bonnie (grandmother to Lindsey 10 years old) > > > > > > > > Bonnie > > > > >________________________________ > > > > > >To: polymicrogyria > > >Sent: Sunday, March 11, 2012 1:08 PM > > >Subject: Progess > > > > > > > > > > > >I have followed with interest posts regarding milestones and achievements. I have been a member of this group for near on 10 years now, but although I have not posted myself for sometime, I do read all the postings. (except US specific topics: I am in the UK) > > > > > >My daughter is now 10+ years old and this is her story. Dates and ages are approximate as I have written from memory, there is too much on file to read through! > > >Chloe is our fifth child and was born with an uneventful birth, at a weight of 7lbs 10oz > > >She presented no signs of any problems either during pregnancy or after she was born (Other than she has a small head (microcephaly) but this was not pointed out until after problems were noticed. Why the doctor did not pick up on this we don't know). > > > > > >At around 4 months of age we noted she had made no attempt to sit up or reach out at objects. She was however, very responsive to smiles and sounds as would be expected. Eye sight and hearing apparently normal. > > >It took a couple of months to get a diagnosis once we had persuaded our health visitor there was a problem. > > >She was initially diagnosed with Pachygyria, later to be changed to diffuse bilateral polymicrogyria. As mentioned, she has a small head (microcephaly) but this was not pointed out until after problems were noticed. It all came as quite a shock. > > > > > >Her up to date diagnosis is: > > >1. Cerebral palsy with four limb disorder secondary to Polymicrogyria associated with Microcephaly. > > >2. Severe development delay. > > >3. Epilepsy with generalised and partial seizures. > > >4. Gastrostomy MIC-KEY for all feeds. > > >5. Precocious Puberty > > >6. Very low bone density / paediatric osteoporosis > > > > > >10+ years on and she is still unable to sit up, walk, talk, communicate, reach out or hold anything. > > >At approx. 2 years she had operations on her hips at correct dislocation. Whether its due to the ops or not, she now has one leg larger than the other. The operations were to break and rotate her thigh bone to engage the hip joints. > > >At approx. 3 years she had her first seizure. It took some time (years) to find the right mix of meds, but she is fairly well controlled now (Lamotrigine and Topirimate with BuccalMidazalam for prolonged seizures + Clobozam for clusters) > > >Because of failure to thrive we reluctantly agreed to a G Tube at the age of approx 4. This was un-doubtfully the best decision we made. She is now exclusively tube fed due to possible aspiration. > > >At approx 7 years of age she showed early signs of puberty and now has regular injections to halt the process until she is older. > > >2 years ago she had a short seizure whilst seated in her wheel chair (which is not at all uncommon) but the pure strength of the contractions broke her thigh bone due to osteoporsis. This led to her having a series of infusions to stengthen her bones. > > > > > >Her main problems now are postural. And her severe learning disorder. > > >For us it is handling, changing pads (she weighs 36kg (80lbs?)) and mopping up saliva. > > > > > >She remains a happy, smiley girl, despite everything. She always has the biggest smile for me when I enter the room. > > >Reading other peoples posts, I am sure Chloe is at the more severe end of the spetrum, however in the first few months of life we did not even suspect a problem. > > > > > >Just to top it all, our third grand child has been diganosed with -Lemli-Opitz Syndrome, and our expected fifth grandchild (due in May) has a club foot and (slighty) short limbs. Yet none of these conditions are medically related. > > > > > >Oh, car seats: Chloe had a rear facing seat until she out grew it at approx 7 years old, now we have a Wheel Chair AccessbleVWMultivan. (VWCaravelle here in the UK) > > > > > >Dom > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 had Botox on two occasions but he was such a light weight that they couldn't give him enough to cover the full legs. It did stall surgery for a while though so he learned use the walker. They said if the child learns to love walking even with difficulty, they will do better after surg.  Lindsey sounds like in that he was fed orally til this year at age 18. WhatI can tell you is don't overlook the importance of a G-tube in the future for Lindsey. 's incidence of aspiration increased as he got older even though he now walks on a K walker and appears quite strong physically. He got a G-tube in Jan and he feels so much better. He loved Food and ate anything but he feels so much better that he rarely asks for food and never asks for a drink. If he gets thirsty, he reminds me to give more water by tube. ________________________________ To: " polymicrogyria " <polymicrogyria > Sent: Tuesday, March 13, 2012 10:22 AM Subject: Re: Progess  My son had Botox injections at 13 months of age. They sedated him and then injected him. It was a quick 2-3 hour procedure and then we went home. “I am learning all the time. The tombstone will be my diploma.†— Eartha Kitt > Hi Bonnie, > I was reading your email and they should defiantly do the Botox. My son Cameron had it done every six months to his legs and upper limbs, I find it fantastic. Hip surgery can be and is a nightmare. Unfortunately when they need it done there us no choice they need it . Botox for Cameron is a breeze in and out of hospital within a few hours. > > All the best > > Sent from adrian's work > > On Mar 12, 2012, at 12:32 PM, " Zagrovich@ yahoo.com " wrote: > > > Dom: > > Your daughter Chloe sounds much like my granddaughter, Lindsey except that she is still fed orally. She is almost 11 years old. I don't post very often either but I can very much relate to your story. Myself and the other grandmother care for Lindsey 2 -3 days/week while her mother and father work. And...she's getting so heavy (60 pounds) we can hardly lift her!! > > > > The only sign we had before she was born was that her mother only weighed 110 pounds when she got pregnant and weighed 190 when she delivered. We knew but the doctor insisted we were wrong. My daughter had untreated hypertension throughout. At her ob visits, the doctor would tell my daughter to just lay on her side and if the blood pressure reading came down, she could go home which she did. We now know she had poly-hydrogenous (too much amniotic fluid.) Lindsey was born 6 weeks early due to the fact that when the doctor did an amniocentesis her water broke. The rest is history. > > > > Lindsey was diagnosed at 1 year old. We had an idea that something was wrong because she didn't sit, crawl or make baby noises. Missed her milestones I guess. She too is diagnosed with microcephaly (small head) We believe that if the doctor had delivered her even a little earlier and was allowed to develop in the incubator, her disabilities wouldn't have been as severe. The doctor was adiment that she could not be delivered early but then when my daughter's water broke she had no choice. Lindsey does although hear and see well and is very responsive to all of her surroundings She's happy and has a smile on her face most of the time. She loves to cuddle, snuggle and tickle. Oh and most of all.....she loves to play dolls which I have to dress and pretend they talk. If you could only see how silly I look!! If you did, you'd be calling the white paddy wagon to come and take me away!!!! ; ) The speech therapist took pictures of > > all the outfits the dolls wear and uploaded them to the I pad. Now we opens the i pad and she points to what she wants her doll to wear. Lindsey can't even hold a crayon but she sure can isolate her little index finger and navigate the I-pad to color. What a blessing that is!!!! It just blows me away to watch. Only because she can do so little in life but she knows (I don't) all the icons and how to change everything on it. She navigates her way through the programs like a whiz!! > > > > Her diagnosis is: > > > > Microcephaly/ diffuse bilateral polymicrogyria/ CP secondary to polymicrogyria affecting both legs and arms. She too has severe development delay. Grand Mal seizures. They started when she was about 8. She's has had about 15 to date. Lindsey has been seizure free for 14 months. She is treated with Keppra for that. We have been told by the ped neurologist that usually when a child goes 2 years without a seizure they remove them from the meds. Worst thing being that she has a seizure and is put back on. > > > > The PT that Lindsey sees told us a month ago, that she would probably have to have something like you mentioned with her hips. Just last week she had an appointment at Ortho Children's Memorial in Chicago. This doctor said no leg/hip surgery is needed but rather Botox treatments to loosen the muscles. Insurance has already approved it. Now her parents have to decide whether to go with it. He said that sometimes it is a little painful but less than the surgery. Anyone have experience with Botox therapy? > > > > Sorry for making this so long. I had no intention of telling Lindsey's entire story but rather to say that Lindsey was much like Dom. > > Blessings to you, Dom and to all the wonderful people on this site! True heroes!!! > > > > Bonnie (grandmother to Lindsey 10 years old) > > > > > > > > Bonnie > > > > >________________________________ > > > > > >To: polymicrogyria > > >Sent: Sunday, March 11, 2012 1:08 PM > > >Subject: Progess > > > > > > > > > > > >I have followed with interest posts regarding milestones and achievements. I have been a member of this group for near on 10 years now, but although I have not posted myself for sometime, I do read all the postings. (except US specific topics: I am in the UK) > > > > > >My daughter is now 10+ years old and this is her story. Dates and ages are approximate as I have written from memory, there is too much on file to read through! > > >Chloe is our fifth child and was born with an uneventful birth, at a weight of 7lbs 10oz > > >She presented no signs of any problems either during pregnancy or after she was born (Other than she has a small head (microcephaly) but this was not pointed out until after problems were noticed. Why the doctor did not pick up on this we don't know). > > > > > >At around 4 months of age we noted she had made no attempt to sit up or reach out at objects. She was however, very responsive to smiles and sounds as would be expected. Eye sight and hearing apparently normal. > > >It took a couple of months to get a diagnosis once we had persuaded our health visitor there was a problem. > > >She was initially diagnosed with Pachygyria, later to be changed to diffuse bilateral polymicrogyria. As mentioned, she has a small head (microcephaly) but this was not pointed out until after problems were noticed. It all came as quite a shock. > > > > > >Her up to date diagnosis is: > > >1. Cerebral palsy with four limb disorder secondary to Polymicrogyria associated with Microcephaly. > > >2. Severe development delay. > > >3. Epilepsy with generalised and partial seizures. > > >4. Gastrostomy MIC-KEY for all feeds. > > >5. Precocious Puberty > > >6. Very low bone density / paediatric osteoporosis > > > > > >10+ years on and she is still unable to sit up, walk, talk, communicate, reach out or hold anything. > > >At approx. 2 years she had operations on her hips at correct dislocation. Whether its due to the ops or not, she now has one leg larger than the other. The operations were to break and rotate her thigh bone to engage the hip joints. > > >At approx. 3 years she had her first seizure. It took some time (years) to find the right mix of meds, but she is fairly well controlled now (Lamotrigine and Topirimate with BuccalMidazalam for prolonged seizures + Clobozam for clusters) > > >Because of failure to thrive we reluctantly agreed to a G Tube at the age of approx 4. This was un-doubtfully the best decision we made. She is now exclusively tube fed due to possible aspiration. > > >At approx 7 years of age she showed early signs of puberty and now has regular injections to halt the process until she is older. > > >2 years ago she had a short seizure whilst seated in her wheel chair (which is not at all uncommon) but the pure strength of the contractions broke her thigh bone due to osteoporsis. This led to her having a series of infusions to stengthen her bones. > > > > > >Her main problems now are postural. And her severe learning disorder. > > >For us it is handling, changing pads (she weighs 36kg (80lbs?)) and mopping up saliva. > > > > > >She remains a happy, smiley girl, despite everything. She always has the biggest smile for me when I enter the room. > > >Reading other peoples posts, I am sure Chloe is at the more severe end of the spetrum, however in the first few months of life we did not even suspect a problem. > > > > > >Just to top it all, our third grand child has been diganosed with -Lemli-Opitz Syndrome, and our expected fifth grandchild (due in May) has a club foot and (slighty) short limbs. Yet none of these conditions are medically related. > > > > > >Oh, car seats: Chloe had a rear facing seat until she out grew it at approx 7 years old, now we have a Wheel Chair AccessbleVWMultivan. (VWCaravelle here in the UK) > > > > > >Dom > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 We were just told last week that despite the success of the surgery, they do not want Finlay to walk. We were looking forward to him being able to enjoy it even more now. We are waiting to speak to the surgeon to find out what is going on!? Annelies Progess > > > > > > > > > > > >I have followed with interest posts regarding milestones and achievements. I have been a member of this group for near on 10 years now, but although I have not posted myself for sometime, I do read all the postings. (except US specific topics: I am in the UK) > > > > > >My daughter is now 10+ years old and this is her story. Dates and ages are approximate as I have written from memory, there is too much on file to read through! > > >Chloe is our fifth child and was born with an uneventful birth, at a weight of 7lbs 10oz > > >She presented no signs of any problems either during pregnancy or after she was born (Other than she has a small head (microcephaly) but this was not pointed out until after problems were noticed. Why the doctor did not pick up on this we don't know). > > > > > >At around 4 months of age we noted she had made no attempt to sit up or reach out at objects. She was however, very responsive to smiles and sounds as would be expected. Eye sight and hearing apparently normal. > > >It took a couple of months to get a diagnosis once we had persuaded our health visitor there was a problem. > > >She was initially diagnosed with Pachygyria, later to be changed to diffuse bilateral polymicrogyria. As mentioned, she has a small head (microcephaly) but this was not pointed out until after problems were noticed. It all came as quite a shock. > > > > > >Her up to date diagnosis is: > > >1. Cerebral palsy with four limb disorder secondary to Polymicrogyria associated with Microcephaly. > > >2. Severe development delay. > > >3. Epilepsy with generalised and partial seizures. > > >4. Gastrostomy MIC-KEY for all feeds. > > >5. Precocious Puberty > > >6. Very low bone density / paediatric osteoporosis > > > > > >10+ years on and she is still unable to sit up, walk, talk, communicate, reach out or hold anything. > > >At approx. 2 years she had operations on her hips at correct dislocation. Whether its due to the ops or not, she now has one leg larger than the other. The operations were to break and rotate her thigh bone to engage the hip joints. > > >At approx. 3 years she had her first seizure. It took some time (years) to find the right mix of meds, but she is fairly well controlled now (Lamotrigine and Topirimate with BuccalMidazalam for prolonged seizures + Clobozam for clusters) > > >Because of failure to thrive we reluctantly agreed to a G Tube at the age of approx 4. This was un-doubtfully the best decision we made. She is now exclusively tube fed due to possible aspiration. > > >At approx 7 years of age she showed early signs of puberty and now has regular injections to halt the process until she is older. > > >2 years ago she had a short seizure whilst seated in her wheel chair (which is not at all uncommon) but the pure strength of the contractions broke her thigh bone due to osteoporsis. This led to her having a series of infusions to stengthen her bones. > > > > > >Her main problems now are postural. And her severe learning disorder. > > >For us it is handling, changing pads (she weighs 36kg (80lbs?)) and mopping up saliva. > > > > > >She remains a happy, smiley girl, despite everything. She always has the biggest smile for me when I enter the room. > > >Reading other peoples posts, I am sure Chloe is at the more severe end of the spetrum, however in the first few months of life we did not even suspect a problem. > > > > > >Just to top it all, our third grand child has been diganosed with -Lemli-Opitz Syndrome, and our expected fifth grandchild (due in May) has a club foot and (slighty) short limbs. Yet none of these conditions are medically related. > > > > > >Oh, car seats: Chloe had a rear facing seat until she out grew it at approx 7 years old, now we have a Wheel Chair AccessbleVWMultivan. (VWCaravelle here in the UK) > > > > > >Dom > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 Hi Bonnie, I was reading your email and they should defiantly do the Botox. My son Cameron had it done every six months to his legs and upper limbs, I find it fantastic. Hip surgery can be and is a nightmare. Unfortunately when they need it done there us no choice they need it . Botox for Cameron is a breeze in and out of hospital within a few hours. All the best Sent from adrian's work On Mar 12, 2012, at 12:32 PM, " Zagrovich@ yahoo.com " wrote: > Dom: > Your daughter Chloe sounds much like my granddaughter, Lindsey except that she is still fed orally. She is almost 11 years old. I don't post very often either but I can very much relate to your story. Myself and the other grandmother care for Lindsey 2 -3 days/week while her mother and father work. And...she's getting so heavy (60 pounds) we can hardly lift her!! > > The only sign we had before she was born was that her mother only weighed 110 pounds when she got pregnant and weighed 190 when she delivered. We knew but the doctor insisted we were wrong. My daughter had untreated hypertension throughout. At her ob visits, the doctor would tell my daughter to just lay on her side and if the blood pressure reading came down, she could go home which she did. We now know she had poly-hydrogenous (too much amniotic fluid.) Lindsey was born 6 weeks early due to the fact that when the doctor did an amniocentesis her water broke. The rest is history. > > Lindsey was diagnosed at 1 year old. We had an idea that something was wrong because she didn't sit, crawl or make baby noises. Missed her milestones I guess. She too is diagnosed with microcephaly (small head) We believe that if the doctor had delivered her even a little earlier and was allowed to develop in the incubator, her disabilities wouldn't have been as severe. The doctor was adiment that she could not be delivered early but then when my daughter's water broke she had no choice. Lindsey does although hear and see well and is very responsive to all of her surroundings She's happy and has a smile on her face most of the time. She loves to cuddle, snuggle and tickle. Oh and most of all.....she loves to play dolls which I have to dress and pretend they talk. If you could only see how silly I look!! If you did, you'd be calling the white paddy wagon to come and take me away!!!! ; ) The speech therapist took pictures of > all the outfits the dolls wear and uploaded them to the I pad. Now we opens the i pad and she points to what she wants her doll to wear. Lindsey can't even hold a crayon but she sure can isolate her little index finger and navigate the I-pad to color. What a blessing that is!!!! It just blows me away to watch. Only because she can do so little in life but she knows (I don't) all the icons and how to change everything on it. She navigates her way through the programs like a whiz!! > > Her diagnosis is: > > Microcephaly/ diffuse bilateral polymicrogyria/ CP secondary to polymicrogyria affecting both legs and arms. She too has severe development delay. Grand Mal seizures. They started when she was about 8. She's has had about 15 to date. Lindsey has been seizure free for 14 months. She is treated with Keppra for that. We have been told by the ped neurologist that usually when a child goes 2 years without a seizure they remove them from the meds. Worst thing being that she has a seizure and is put back on. > > The PT that Lindsey sees told us a month ago, that she would probably have to have something like you mentioned with her hips. Just last week she had an appointment at Ortho Children's Memorial in Chicago. This doctor said no leg/hip surgery is needed but rather Botox treatments to loosen the muscles. Insurance has already approved it. Now her parents have to decide whether to go with it. He said that sometimes it is a little painful but less than the surgery. Anyone have experience with Botox therapy? > > Sorry for making this so long. I had no intention of telling Lindsey's entire story but rather to say that Lindsey was much like Dom. > Blessings to you, Dom and to all the wonderful people on this site! True heroes!!! > > Bonnie (grandmother to Lindsey 10 years old) > > > > Bonnie > > >________________________________ > > > >To: polymicrogyria > >Sent: Sunday, March 11, 2012 1:08 PM > >Subject: Progess > > > > > > > >I have followed with interest posts regarding milestones and achievements. I have been a member of this group for near on 10 years now, but although I have not posted myself for sometime, I do read all the postings. (except US specific topics: I am in the UK) > > > >My daughter is now 10+ years old and this is her story. Dates and ages are approximate as I have written from memory, there is too much on file to read through! > >Chloe is our fifth child and was born with an uneventful birth, at a weight of 7lbs 10oz > >She presented no signs of any problems either during pregnancy or after she was born (Other than she has a small head (microcephaly) but this was not pointed out until after problems were noticed. Why the doctor did not pick up on this we don't know). > > > >At around 4 months of age we noted she had made no attempt to sit up or reach out at objects. She was however, very responsive to smiles and sounds as would be expected. Eye sight and hearing apparently normal. > >It took a couple of months to get a diagnosis once we had persuaded our health visitor there was a problem. > >She was initially diagnosed with Pachygyria, later to be changed to diffuse bilateral polymicrogyria. As mentioned, she has a small head (microcephaly) but this was not pointed out until after problems were noticed. It all came as quite a shock. > > > >Her up to date diagnosis is: > >1. Cerebral palsy with four limb disorder secondary to Polymicrogyria associated with Microcephaly. > >2. Severe development delay. > >3. Epilepsy with generalised and partial seizures. > >4. Gastrostomy MIC-KEY for all feeds. > >5. Precocious Puberty > >6. Very low bone density / paediatric osteoporosis > > > >10+ years on and she is still unable to sit up, walk, talk, communicate, reach out or hold anything. > >At approx. 2 years she had operations on her hips at correct dislocation. Whether its due to the ops or not, she now has one leg larger than the other. The operations were to break and rotate her thigh bone to engage the hip joints. > >At approx. 3 years she had her first seizure. It took some time (years) to find the right mix of meds, but she is fairly well controlled now (Lamotrigine and Topirimate with BuccalMidazalam for prolonged seizures + Clobozam for clusters) > >Because of failure to thrive we reluctantly agreed to a G Tube at the age of approx 4. This was un-doubtfully the best decision we made. She is now exclusively tube fed due to possible aspiration. > >At approx 7 years of age she showed early signs of puberty and now has regular injections to halt the process until she is older. > >2 years ago she had a short seizure whilst seated in her wheel chair (which is not at all uncommon) but the pure strength of the contractions broke her thigh bone due to osteoporsis. This led to her having a series of infusions to stengthen her bones. > > > >Her main problems now are postural. And her severe learning disorder. > >For us it is handling, changing pads (she weighs 36kg (80lbs?)) and mopping up saliva. > > > >She remains a happy, smiley girl, despite everything. She always has the biggest smile for me when I enter the room. > >Reading other peoples posts, I am sure Chloe is at the more severe end of the spetrum, however in the first few months of life we did not even suspect a problem. > > > >Just to top it all, our third grand child has been diganosed with -Lemli-Opitz Syndrome, and our expected fifth grandchild (due in May) has a club foot and (slighty) short limbs. Yet none of these conditions are medically related. > > > >Oh, car seats: Chloe had a rear facing seat until she out grew it at approx 7 years old, now we have a Wheel Chair AccessbleVWMultivan. (VWCaravelle here in the UK) > > > >Dom > > > > Quote Link to comment Share on other sites More sharing options...
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