Guest guest Posted July 20, 2005 Report Share Posted July 20, 2005 Hi, My son Charlie is 2 and a 1/2 and does not speak. He does scream and make ilagelabie sounds. He is in the process of going through the " early intervetion " process, so far the speech therapist said he is severly speach delayed. He is able to convey want he wants by pointing and take you by the hand to want he wants.He is ok in all other developmental issues. He was saying mama, mama, mama, prior to his 2nd fever episode. I'm trying to see if the is a connection beteween the two. Has any one else had any devolpmental delays?????? Charlie ahs been on Tagament sice his 3rd fever episode in April and has had no fevers since. Thanks for any help, Cortlandt Manor, NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2005 Report Share Posted July 20, 2005 My daughter, Eva, has gross motor developmental delays. She began physical therapy when she was 1 and started walking when she was 2 years old (she's now 2.2 years old). She is still very weak and continues with pt. We were told by the developmental pediatrician and the pediatric rheumatologist that it is not related to her fevers - which we suspect are Pfapa. I wonder. Best of luck to you and Charlie with the early intervention. It's made a world of difference for Eva. uchetel <uchetel@...> wrote: Hi, My son Charlie is 2 and a 1/2 and does not speak. He does scream and make ilagelabie sounds. He is in the process of going through the " early intervetion " process, so far the speech therapist said he is severly speach delayed. He is able to convey want he wants by pointing and take you by the hand to want he wants.He is ok in all other developmental issues. He was saying mama, mama, mama, prior to his 2nd fever episode. I'm trying to see if the is a connection beteween the two. Has any one else had any devolpmental delays?????? Charlie ahs been on Tagament sice his 3rd fever episode in April and has had no fevers since. Thanks for any help, Cortlandt Manor, NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2005 Report Share Posted July 20, 2005 My boys are in EI also. has a language processing disorder. is having speach issues as well. Dr. Kastner did not feel that it was related to the fevers. > Hi, > My son Charlie is 2 and a 1/2 and does not speak. He does scream and > make ilagelabie sounds. He is in the process of going through > the " early intervetion " process, so far the speech therapist said he > is severly speach delayed. He is able to convey want he wants by > pointing and take you by the hand to want he wants.He is ok in all > other developmental issues. He was saying mama, mama, mama, prior to his > 2nd fever episode. I'm trying to see if the is a connection beteween > the two. Has any one else had any devolpmental delays?????? > Charlie ahs been on Tagament sice his 3rd fever episode in April and > has had no fevers since. > > Thanks for any help, > > Cortlandt Manor, NY > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2005 Report Share Posted July 20, 2005 Hi I spoke with Dr Kastner last week for a LONG conversation. We discussed ph's lab values and doing further testing... and we also touched developmental and behavior issues. He told me that he did not thing specific developmental delays were caused by the Periodic Fever Syndromes for the most part. That is the ACTUAL neuro-transmitters. What he said was BASED on common sense. He felt the ACTUAL fever and symptoms causes the kids to feel week, tired, anxious etc... He said depending on the other symptoms, such as abdominal discomfort/vomiting, canker sores etc... will also make the children feel terrible. Thus effecting behavior and their ability to KEEP up with developing their fine motor and gross motor skills during the fevers. If a child is affected OFTEN with high fevers, and they are DIFFICULT to control, the child may fall behind. There is NO direct NEUROLOGICAL effect from the fever disorder. He said the BETTER the fevers and other symptoms are controlled, with medication the less one SHOULD see the delays. He said if you or I had a fever... we feel lousy and cannot perform normally. VERY true. He went on to say, imagine getting HIGH fevers for 5-6 days every 21 days WITH other painful symptoms, such as vomiting, canker sores and possibly joint pain etc... During those 5-6 days and probably another 4-5 days pre-fever and post fever, the child feels bad leading to a decrease in fine and gross motor skills... (stumbling, falling etc). With a pattern like this, one could see developmental delays and focus issues. This is the MAIN reason HE believes the children need to get the BEST diagnosis as possible and get on the CORRECT medication that prevents or maintains fevers and the other symptoms. He said the children that are well regulated catch up to the other children quickly. My son was on target as an infant. As he went into toddler hood... I noticed he would fall easier than other kids... He had difficulty writing letters... he DOES have a speech developmental problem, saying the (IR, ER) sound.... which I was told would or should clear up by 5. He was tested a couple of months ago... and I LAUGHED when I recently read the SPEECH PATHOLOGISTS finding... NORMAL... she labeled his speech as NORMAL. Funny thing is we moved here from Florida, and his NEW doctor mentioned ph's speech challenge and noted that this should be looked at. I contacted my ped in Florida last week because he told me this should developmentally go away by 5. Well ph is now 6 and it is strong... and when I try to help him he gets so upset. My ped in Florida... who I respect and have 100% confidence in... said he should get into a speech program now. Also I notice ph cannot keep up running... he falls much more during his episode. He has difficulty writing now... But again testing shows he is normal!! LOL Who knows what will happen, the school my son attends did not seem concerned about his fever disorder nor his speech etc... and did not recognize behaviors associated with his fever syndrome even after I REMINDED his kinder teacher. She continued to punish ph for NOT focusing, completing school work... He EVEN fell and tore up his face on the play ground while climbing on the monkey bars during a fever.. and she NEVER called me. I picked him up after a " mentoring Monday " class focused on handwriting and he had a HUGE abrasion on his face. I asked what happened and the teacher (Another kinder teacher not his) told me what happened. She was surprised I was not called!! He STILL has a scar on his cheek from the fall. Amazing how UNTIL I MADE a stink, the principal and counselors simply swept us under the rug. I As for seeing actual learning disabilities etc... or autistic behavior etc... none of these are associated with the fever disorders. Lastly FMF children, Muckle Wells Children, and a few of the more rarer fever disorders do OCCASIONALLY show actual neuro-transmitter problems. Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2005 Report Share Posted July 20, 2005 Thank you to all of you who responded to me. I hoping to rule things out. We are going to Dr. Chao (our ID Dr.) on Aug 2 for Charlie's 4mth follow up. I am planning on requesting genetic testing as my husband and I are not fully comfortable with the Periodic Fever diagnoss. We just want to make sure it's not more and we missed it. I'll keep you posted on what's going on. Charlie age 2 & Josh age 3 1/2 -- In , " Fran Bulone " <fbulone@c...> wrote: > Hi > I spoke with Dr Kastner last week for a LONG conversation. > We discussed ph's lab values and doing further testing... and we also > touched developmental and behavior issues. > > He told me that he did not thing specific developmental delays were caused > by the Periodic Fever Syndromes for the most part. That is the ACTUAL > neuro-transmitters. What he said was BASED on common sense. He felt the > ACTUAL fever and symptoms causes the kids to feel week, tired, anxious > etc... He said depending on the other symptoms, such as abdominal > discomfort/vomiting, canker sores etc... will also make the children feel > terrible. Thus effecting behavior and their ability to KEEP up with > developing their fine motor and gross motor skills during the fevers. > > If a child is affected OFTEN with high fevers, and they are DIFFICULT to > control, the child may fall behind. There is NO direct NEUROLOGICAL effect > from the fever disorder. He said the BETTER the fevers and other symptoms > are controlled, with medication the less one SHOULD see the delays. He said > if you or I had a fever... we feel lousy and cannot perform normally. VERY > true. He went on to say, imagine getting HIGH fevers for 5-6 days every 21 > days WITH other painful symptoms, such as vomiting, canker sores and > possibly joint pain etc... During those 5-6 days and probably another 4-5 > days pre-fever and post fever, the child feels bad leading to a decrease in > fine and gross motor skills... (stumbling, falling etc). With a pattern like > this, one could see developmental delays and focus issues. This is the MAIN > reason HE believes the children need to get the BEST diagnosis as possible > and get on the CORRECT medication that prevents or maintains fevers and the > other symptoms. He said the children that are well regulated catch up to the > other children quickly. > > My son was on target as an infant. As he went into toddler hood... I noticed > he would fall easier than other kids... He had difficulty writing letters... > he DOES have a speech developmental problem, saying the (IR, ER) sound.... > which I was told would or should clear up by 5. He was tested a couple of > months ago... and I LAUGHED when I recently read the SPEECH PATHOLOGISTS > finding... NORMAL... she labeled his speech as NORMAL. Funny thing is we > moved here from Florida, and his NEW doctor mentioned ph's speech > challenge and noted that this should be looked at. I contacted my ped in > Florida last week because he told me this should developmentally go away by > 5. Well ph is now 6 and it is strong... and when I try to help him he > gets so upset. My ped in Florida... who I respect and have 100% confidence > in... said he should get into a speech program now. > > Also I notice ph cannot keep up running... he falls much more during his > episode. He has difficulty writing now... But again testing shows he is > normal!! LOL > > Who knows what will happen, the school my son attends did not seem concerned > about his fever disorder nor his speech etc... and did not recognize > behaviors associated with his fever syndrome even after I REMINDED his > kinder teacher. She continued to punish ph for NOT focusing, completing > school work... He EVEN fell and tore up his face on the play ground while > climbing on the monkey bars during a fever.. and she NEVER called me. I > picked him up after a " mentoring Monday " class focused on handwriting and he > had a HUGE abrasion on his face. I asked what happened and the teacher > (Another kinder teacher not his) told me what happened. She was surprised I > was not called!! He STILL has a scar on his cheek from the fall. Amazing how > UNTIL I MADE a stink, the principal and counselors simply swept us under the > rug. > > I > > As for seeing actual learning disabilities etc... or autistic behavior > etc... none of these are associated with the fever disorders. > > Lastly FMF children, Muckle Wells Children, and a few of the more rarer > fever disorders do OCCASIONALLY show actual neuro-transmitter problems. > > Fran > Fran A Bulone > Mom to ph 5 yrs old > Waxhaw, NC > > Owner & Moderator Group > > > > > > Quote Link to comment Share on other sites More sharing options...
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