Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 We had cf clinic yesterday. Zach gained a little weight. He weighs 24.3 pounds now. Yeah! His blood tests are all good too. We went to his 2 year old well baby check up today and our ped is very concerned about Zach's walking. He walks on his toes with his right foot turned in. She is concerned it could be cerebral palsy or muscular dystrophy. I had already scheduled a follow up appointment with a pediatric othropedic specialist, but she also wants us to see a develpmental pediatrician. This was quite a shock to hear her say these words. Does anyone have a child with cf and cp or md? Sara - mommy of Zach 2yo wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Sara, Hope this all turns out to be nothing. I'm curious if you had a difficult delivery when Zach was born? I do know of someone close to you with a child that has cp. Keep us posted and I will be thinking of you & your family! Debbie Zach update We had cf clinic yesterday. Zach gained a little weight. He weighs 24.3 pounds now. Yeah! His blood tests are all good too. We went to his 2 year old well baby check up today and our ped is very concerned about Zach's walking. He walks on his toes with his right foot turned in. She is concerned it could be cerebral palsy or muscular dystrophy. I had already scheduled a follow up appointment with a pediatric othropedic specialist, but she also wants us to see a develpmental pediatrician. This was quite a shock to hear her say these words. Does anyone have a child with cf and cp or md? Sara - mommy of Zach 2yo wcf ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Zach was 9 weeks premature but the neonatalogist said that Zach luckily did not experience any brain bleeds which often lead to cp. We now know that this particular neonatalogist is not the brightest bulb in the pack so he could have been wrong about that too. Let me know about the family with a child with cp. Our pediatrician said she could be wrong about the cp so the specialist should know for sure, but it might be nice to talk to someone who is experienced with this. Sara > Sara, Hope this all turns out to be nothing. I'm curious if you had a difficult delivery when Zach was born? I do know of someone close to you with a child that has cp. Keep us posted and I will be thinking of you & your family! Debbie > Zach update > > > We had cf clinic yesterday. Zach gained a little weight. He weighs > 24.3 pounds now. Yeah! His blood tests are all good too. > We went to his 2 year old well baby check up today and our ped is > very concerned about Zach's walking. He walks on his toes with his > right foot turned in. She is concerned it could be cerebral palsy > or muscular dystrophy. I had already scheduled a follow up > appointment with a pediatric othropedic specialist, but she also > wants us to see a develpmental pediatrician. This was quite a shock > to hear her say these words. > Does anyone have a child with cf and cp or md? > > Sara - mommy of Zach 2yo wcf > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Was this girl ever able to walk on her own? Zach also never sat up on his own. We thought it was from undiagnosed cf and that he was really malnourished. He skipped sitting and crawling and went straight to walking. Now he crawls a little but mostly walks. It is just that he walks differently than most. He also stumbles and falls alot if he is fatigued. I would be glad to get the info on the family from you, even though they are Cub fans. We are Cardinal fans, but I can overlook it. Sara > > Sara, Hope this all turns out to be nothing. I'm curious if you > had a difficult delivery when Zach was born? I do know of someone > close to you with a child that has cp. Keep us posted and I will be > thinking of you & your family! Debbie > > Zach update > > > > > > We had cf clinic yesterday. Zach gained a little weight. He > weighs > > 24.3 pounds now. Yeah! His blood tests are all good too. > > We went to his 2 year old well baby check up today and our ped > is > > very concerned about Zach's walking. He walks on his toes with > his > > right foot turned in. She is concerned it could be cerebral > palsy > > or muscular dystrophy. I had already scheduled a follow up > > appointment with a pediatric othropedic specialist, but she also > > wants us to see a develpmental pediatrician. This was quite a > shock > > to hear her say these words. > > Does anyone have a child with cf and cp or md? > > > > Sara - mommy of Zach 2yo wcf > > > > > > > > ------------------------------------------- > > The opinions and information exchanged on this list should IN NO > WAY > > be construed as medical advice. > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > > > ------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Like you don't have enough on your plate already. I hope everything works out and he just needs some sort of corrective therapy. Love to all of you, Cheryl, mom to 3 boys, Zac 8 yrs. wocf, Jake 3 yrs. wocf, Matty 2 yrs. wcf - still culturing PA!!UGH!!! Zach update We had cf clinic yesterday. Zach gained a little weight. He weighs 24.3 pounds now. Yeah! His blood tests are all good too. We went to his 2 year old well baby check up today and our ped is very concerned about Zach's walking. He walks on his toes with his right foot turned in. She is concerned it could be cerebral palsy or muscular dystrophy. I had already scheduled a follow up appointment with a pediatric othropedic specialist, but she also wants us to see a develpmental pediatrician. This was quite a shock to hear her say these words. Does anyone have a child with cf and cp or md? Sara - mommy of Zach 2yo wcf ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Well, the oldest living officially diagnosed cystic fibrosis individual in the USA, now 78 or 79, was born prematurely, very, and I believe carries double deltaf508 mutations. Just do not give up; if neurological consult is needed, get it done, and do not give up! My mother did not, and I was poremature, never crawled, walked VERY late, but eventually caught up! Your child has his own potential and you will help develop it. Love to you from one mother, wcf, of a cf adult, to another mother of a cf child, n Rojas Zach update > > > We had cf clinic yesterday. Zach gained a little weight. He weighs > 24.3 pounds now. Yeah! His blood tests are all good too. > We went to his 2 year old well baby check up today and our ped is > very concerned about Zach's walking. He walks on his toes with his > right foot turned in. She is concerned it could be cerebral palsy > or muscular dystrophy. I had already scheduled a follow up > appointment with a pediatric othropedic specialist, but she also > wants us to see a develpmental pediatrician. This was quite a shock > to hear her say these words. > Does anyone have a child with cf and cp or md? > > Sara - mommy of Zach 2yo wcf > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 Sara, It sounds like clinic went well! I don't know about the walking thing though. I hope that Zach doesn't have another challenge on top of CF. walked on her toes all the time as a toddler but she seems to walk on her full foot now, except when running. Zach update We had cf clinic yesterday. Zach gained a little weight. He weighs 24.3 pounds now. Yeah! His blood tests are all good too. We went to his 2 year old well baby check up today and our ped is very concerned about Zach's walking. He walks on his toes with his right foot turned in. She is concerned it could be cerebral palsy or muscular dystrophy. I had already scheduled a follow up appointment with a pediatric othropedic specialist, but she also wants us to see a develpmental pediatrician. This was quite a shock to hear her say these words. Does anyone have a child with cf and cp or md? Sara - mommy of Zach 2yo wcf ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 never crawled either, she did sit up early though (she was trying to escape the reflux that we didn't know she had!)- almost from birth I could feel her stomach muscles straining to pull her into an upright position. And she walked early too. Zach update > > > We had cf clinic yesterday. Zach gained a little weight. He weighs > 24.3 pounds now. Yeah! His blood tests are all good too. > We went to his 2 year old well baby check up today and our ped is > very concerned about Zach's walking. He walks on his toes with his > right foot turned in. She is concerned it could be cerebral palsy > or muscular dystrophy. I had already scheduled a follow up > appointment with a pediatric othropedic specialist, but she also > wants us to see a develpmental pediatrician. This was quite a shock > to hear her say these words. > Does anyone have a child with cf and cp or md? > > Sara - mommy of Zach 2yo wcf > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 I have seen so many wee ones who have done that.. I hope there is nothing they find .It is great that they are noticing all that is possible.sounds like they are truly looking at your Zach & that is good care. I bet they will say all is well . LOVE & HUGS, GrandmomBEV Zach update We had cf clinic yesterday. Zach gained a little weight. He weighs 24.3 pounds now. Yeah! His blood tests are all good too. We went to his 2 year old well baby check up today and our ped is very concerned about Zach's walking. He walks on his toes with his right foot turned in. She is concerned it could be cerebral palsy or muscular dystrophy. I had already scheduled a follow up appointment with a pediatric othropedic specialist, but she also wants us to see a develpmental pediatrician. This was quite a shock to hear her say these words. Does anyone have a child with cf and cp or md? Sara - mommy of Zach 2yo wcf ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
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