Guest guest Posted February 18, 2010 Report Share Posted February 18, 2010 I have a friend who had Lyme disease while pregnant. Her daughter is now 14 months old and has had 14 ear infections and fevers that they can find no cause for. She has never gone two weeks without being sick. She also had to have a heart surgery at 9 months. My friend has asked every doctor that they have met with if there could be a connection to the Lyme she had while pregnant and they have all told her no. Based on what we have been through with congenital CMV I think Lyme must be playing a part in this. If there is anyone who has been through this with Lyme that can share what they wish they would have done sooner, please let me know. Also, they live in Washington, DC if anyone has a doctor there they would recommend. Thank you, Colleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2010 Report Share Posted February 28, 2010 Hi. I was bit by a tick in Mo. I did not find it for 72 hours. (bad). I was nursing my 2 month old baby. My doctor did not investigate and didn't test the tick (which I had saved). I began having severe pain in my sides and in all my joints. At 6 months of age, my baby started having seizures. With no diagnosis for myself, and being too busy in hospitals with him, trying to stop his seizures, long story short, we went 8 years before being tested for Lymes using the Western Blot test. You must know that if a child is immune suppressed, they cannot mount an immune response to Lyme. My son (he is 8), and I are currently being treated by TBD (tick borne disease) Associates in San Francisco. I am feeling much better and my son is also doing better. Side note: my sons language has exploded during this past 6 weeks since starting Methyl B12 injections every other day. I give them to him at night once he's in a deep sleep and he doesn't even know. He is saying wonderful new things daily! So excited! Sent from my iPhone On Feb 18, 2010, at 5:46 AM, " colleen.waguespack " <colleendesigns@...> wrote: I have a friend who had Lyme disease while pregnant. Her daughter is now 14 months old and has had 14 ear infections and fevers that they can find no cause for. She has never gone two weeks without being sick. She also had to have a heart surgery at 9 months. My friend has asked every doctor that they have met with if there could be a connection to the Lyme she had while pregnant and they have all told her no. Based on what we have been through with congenital CMV I think Lyme must be playing a part in this. If there is anyone who has been through this with Lyme that can share what they wish they would have done sooner, please let me know. Also, they live in Washington, DC if anyone has a doctor there they would recommend. Thank you, Colleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2010 Report Share Posted February 28, 2010 Sheryl, I really want to try Methyl B12. Our son is a nids kids but also has speech apraxia. The language is so delayed but is coming slowly. Do you know if MethylB 12 is approved by Goldberg and if it helps with Apraxia? Thanks, Martha On Sun, Feb 28, 2010 at 11:21 AM, Sheryl <ssaturnino@...> wrote: > > > Hi. I was bit by a tick in Mo. I did not find it for 72 hours. (bad). I was > nursing my 2 month old baby. My doctor did not investigate and didn't test > the tick (which I had saved). I began having severe pain in my sides and in > all my joints. At 6 months of age, my baby started having seizures. With no > diagnosis for myself, and being too busy in hospitals with him, trying to > stop his seizures, long story short, we went 8 years before being tested for > Lymes using the Western Blot test. > > You must know that if a child is immune suppressed, they cannot mount an > immune response to Lyme. My son (he is 8), and I are currently being treated > by TBD (tick borne disease) Associates in San Francisco. I am feeling much > better and my son is also doing better. > > Side note: my sons language has exploded during this past 6 weeks since > starting Methyl B12 injections every other day. I give them to him at night > once he's in a deep sleep and he doesn't even know. He is saying wonderful > new things daily! So excited! > > Sent from my iPhone > > On Feb 18, 2010, at 5:46 AM, " colleen.waguespack " <colleendesigns@...<colleendesigns%40mac.com>> > wrote: > > I have a friend who had Lyme disease while pregnant. Her daughter is now 14 > months old and has had 14 ear infections and fevers that they can find no > cause for. She has never gone two weeks without being sick. She also had to > have a heart surgery at 9 months. My friend has asked every doctor that they > have met with if there could be a connection to the Lyme she had while > pregnant and they have all told her no. Based on what we have been through > with congenital CMV I think Lyme must be playing a part in this. If there is > anyone who has been through this with Lyme that can share what they wish > they would have done sooner, please let me know. Also, they live in > Washington, DC if anyone has a doctor there they would recommend. > Thank you, > Colleen > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2010 Report Share Posted February 28, 2010 My son has speech apraxia too... What has been working with your son, if you don't mind sharing! Thanks- > > I have a friend who had Lyme disease while pregnant. Her daughter is now 14 > months old and has had 14 ear infections and fevers that they can find no > cause for. She has never gone two weeks without being sick. She also had to > have a heart surgery at 9 months. My friend has asked every doctor that they > have met with if there could be a connection to the Lyme she had while > pregnant and they have all told her no. Based on what we have been through > with congenital CMV I think Lyme must be playing a part in this. If there is > anyone who has been through this with Lyme that can share what they wish > they would have done sooner, please let me know. Also, they live in > Washington, DC if anyone has a doctor there they would recommend. > Thank you, > Colleen > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2010 Report Share Posted February 28, 2010 , We found a speech therapist who is trained in the PROMPT method. She does a lot of " mapping " which is similar to tactile cueing to elicit sounds. We also use a sound flip chart from Super Duper that has proven extremely helpful. It basically has a visual picture along with the sound you are working on. We started with basic one word utterances like " boo " and worked up to sounds like " boo moo " We have taken him one baby step at a time which has been tedious. Even though I cannot do the prompt method, I still work with him daily on sound combinations. I also have our team of ABA therapists working with him on this as well. Another thing we are doing that is not on the protocol is a fish oil supplement. (Pharmaceutical grade) We did notice a change after starting him on this. But we did have to be careful to get one that wasn't flavored with citrus as he is allergic to this. He swallows the capsules which are enormous. I have read that it is beneficial for kids with apraxia to have multiple sessions of speech therapy a week. It is better to have three 20 minute sessions than to have one hour session weekly. Not sure if that is true but we are going this route with our son. Hope this helps. Martha n Sun, Feb 28, 2010 at 3:35 PM, Curtis and Hackler < thehacks@...> wrote: > > > My son has speech apraxia too... What has been working with your son, if > you don't mind sharing! > Thanks- > > > > > > > I have a friend who had Lyme disease while pregnant. Her daughter is now > 14 > > months old and has had 14 ear infections and fevers that they can find no > > cause for. She has never gone two weeks without being sick. She also had > to > > have a heart surgery at 9 months. My friend has asked every doctor that > they > > have met with if there could be a connection to the Lyme she had while > > pregnant and they have all told her no. Based on what we have been > through > > with congenital CMV I think Lyme must be playing a part in this. If there > is > > anyone who has been through this with Lyme that can share what they wish > > they would have done sooner, please let me know. Also, they live in > > Washington, DC if anyone has a doctor there they would recommend. > > Thank you, > > Colleen > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2010 Report Share Posted February 28, 2010 THanks for sharing! You're lucky to have ABA & PROMPT therapists nearby. We live in Oklahoma and don't have either that I've been able to find. :-( We do speech therapy twice week right now. Does your son seem really interested in producing the sounds & enjoy looking at the flipchart? Is it something you use on a computer? I'd be interested in hearing more about it, as it is something I could possibly get my hands on! :-) > > > > I have a friend who had Lyme disease while pregnant. Her daughter is now > 14 > > months old and has had 14 ear infections and fevers that they can find no > > cause for. She has never gone two weeks without being sick. She also had > to > > have a heart surgery at 9 months. My friend has asked every doctor that > they > > have met with if there could be a connection to the Lyme she had while > > pregnant and they have all told her no. Based on what we have been > through > > with congenital CMV I think Lyme must be playing a part in this. If there > is > > anyone who has been through this with Lyme that can share what they wish > > they would have done sooner, please let me know. Also, they live in > > Washington, DC if anyone has a doctor there they would recommend. > > Thank you, > > Colleen > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2010 Report Share Posted February 28, 2010 , We are fortunate to have found a Prompt therapist as we live in TN in a city that is not progressive at all. Don't be discouraged. Some of our best ABA folks are ones that have no formal training. We trained them. We view our ABA as tutoring to catch him up on skills he missed while in the " fog " of autism. We are almost out of the " fog " and almost caught up so now we just need the language to pick up. (and the handwriting, too) Amazingly our son loves the flip chart. It is not on the computer but a binder type book that sits upright on a desk. It is called Word Flips for Learning Intelligible Production of Speech by Rhonda Granger. It costs around $50. Google Super Duper and you should be able to find it. Another thing that was recommended to us was the Kauffman Kit. We have the kit from our school system but haven't found a therapist interested in using it with our son. Another thing that is extremely effective is sign language. This is an area that I haven't made time to pursue, but plan to. The basic signs that I have used . . .work. You can easily fade the signs and it is a lot easier in my opinion than the picture cards which we also use. Hope this helps. Martha On Sun, Feb 28, 2010 at 6:09 PM, Curtis and Hackler < thehacks@...> wrote: > > > THanks for sharing! You're lucky to have ABA & PROMPT therapists nearby. > We live in Oklahoma and don't have either that I've been able to find. :-( > We do speech therapy twice week right now. Does your son seem really > interested in producing the sounds & enjoy looking at the flipchart? Is it > something you use on a computer? I'd be interested in hearing more about > it, as it is something I could possibly get my hands on! :-) > > > > > > > > > > > I have a friend who had Lyme disease while pregnant. Her daughter is > now > > 14 > > > months old and has had 14 ear infections and fevers that they can find > no > > > cause for. She has never gone two weeks without being sick. She also > had > > to > > > have a heart surgery at 9 months. My friend has asked every doctor that > > they > > > have met with if there could be a connection to the Lyme she had while > > > pregnant and they have all told her no. Based on what we have been > > through > > > with congenital CMV I think Lyme must be playing a part in this. If > there > > is > > > anyone who has been through this with Lyme that can share what they > wish > > > they would have done sooner, please let me know. Also, they live in > > > Washington, DC if anyone has a doctor there they would recommend. > > > Thank you, > > > Colleen > > > > > > Quote Link to comment Share on other sites More sharing options...
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