Guest guest Posted June 17, 2006 Report Share Posted June 17, 2006 Hi all, I am Mara's grandmother and my daughter Ashlie and I need some help. Mara has started running a fever off and on. We have had her to the emergency room several times and they always call it a viral thing....but it has been happening more and more lately. She has been checked and rechecked and we don't think there is anything going on, but are very scared when she runs a fever as she may have a seizure...she got real blue around the mouth and had low oxygen and had to call the ambulance last time. Anyway, she has a fever sometimes for no apparent reason and then it goes away. It can go up sometimes to 103. I am just wondering if anyone has had this problem and dr's cannot find a cause? Is this a neurological problem with body temp. malfunction? We are just at a loss and hope you all can help us resolve it and we will take ALL suggestions and any experiences with situations similar to try to figure it all out! Thanks very much, Boise, grandma to Mara, PMG (BPNH) and Microcephaly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2006 Report Share Posted June 18, 2006 Hi. We have had lots of fevers. My son is 3 and has PMG, partial deletion chromosome 13q, under developed brain stem, low tone, etc. Initially we saw Ethan having temps that got in the 102 range. These would come on unexpectedly, no other symptoms. We would give tylenol or motrin and there would be no change in the fever. After a few weeks of this we mentioned it to our neurologist and he said it was neurological fevers. Since Ethan has an underdeveloped brain stem (took 2 years to find this out, initially credited the fevers to the PMG), he has problems regulating his autonomic system. We started him on Topamax as it lowers temp, prevents overheating, etc. Since then we have not had these neurological fevers anymore. It is hard when you keep getting fevers for no reason. My son has been running low fevers of about 100-101 for the last 3 weeks. I know our doctor has been wondering if it is an atypical pneumonia. Was considering prescribing Zithromax to see if it helped. We also considered maybe he was having micro aspirations. These would not necessarily show up on a chest x-ray, but could cause a low fever while his body cleared it up. Good luck, C > > Hi all, > I am Mara's grandmother and my daughter Ashlie and I need some help. Mara has started running a fever off and on. We have had her to the emergency room several times and they always call it a viral thing....but it has been happening more and more lately. She has been checked and rechecked and we don't think there is anything going on, but are very scared when she runs a fever as she may have a seizure...she got real blue around the mouth and had low oxygen and had to call the ambulance last time. Anyway, she has a fever sometimes for no apparent reason and then it goes away. It can go up sometimes to 103. > I am just wondering if anyone has had this problem and dr's cannot find a cause? Is this a neurological problem with body temp. malfunction? We are just at a loss and hope you all can help us resolve it and we will take ALL suggestions and any experiences with situations similar to try to figure it all out! > > Thanks very much, > Boise, grandma to Mara, PMG (BPNH) and Microcephaly > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 I can relate to your granddaughter's fever issues....my son who is 15 months has had similar issues on and off for about three weeks now and they too are telling us it is something viral....runs for about 3-4 days then goes away and then comes back. He did end up finally with an ear infection in both ears so got him on antibiotics and it did seem to help so far.....sorry this isn't much help but just know there are others similar and maybe there is something to all of this....I asked myself the same thing about if it could be some issue with temperature control within the brain. Do you keep her fever down with motrin and tylenol? I did that but felt horrible after days upon days of constantly giving him medicine to keep the fever down (for fear of bringing on a seizure.) Good luck......... Amy- mom to Trevin 15 months > > Hi all, > I am Mara's grandmother and my daughter Ashlie and I need some help. Mara has started running a fever off and on. We have had her to the emergency room several times and they always call it a viral thing....but it has been happening more and more lately. She has been checked and rechecked and we don't think there is anything going on, but are very scared when she runs a fever as she may have a seizure...she got real blue around the mouth and had low oxygen and had to call the ambulance last time. Anyway, she has a fever sometimes for no apparent reason and then it goes away. It can go up sometimes to 103. > I am just wondering if anyone has had this problem and dr's cannot find a cause? Is this a neurological problem with body temp. malfunction? We are just at a loss and hope you all can help us resolve it and we will take ALL suggestions and any experiences with situations similar to try to figure it all out! > > Thanks very much, > Boise, grandma to Mara, PMG (BPNH) and Microcephaly > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 Hi , Mara is 5 years old and we too have considered everything we can think of that may be causing the fevers. I gave a copy of your email to my daughter Ashlie and she said it is very interesting as she has been thinking of all these same things. She will see Mara's ped. in a few weeks and she is going to mention all of this to him and hope to get more testing. Mara too has trouble regulating her body temp and CANNOT get hot as she doesn't sweat...so she gets really lethargic and acts strange if she gets overheated....so we keep her out of the heat and always have to make sure the car is cooled, she cannot go outside when it's too hot and a lot of extra care to make sure she is at a comfortable temp. all the time. Thanks for your suggestions and we will let you know what we find out, if anything. Sometimes it is so frustrating trying to convince the doctors that there is something wrong and that your know it's not VIRAL!!! Thanks again, , grandma to Mara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 Hi Amy, Thanks for your reply about Mara's fever. We did have her ears checked. They were ok, but you never know. Thanks for the suggestion, we are always open to everything. Yes my daughter does keep her fever down with Motrin as she too is afraid of a seizure as Mara acts really odd when her fever goes up fast. We had to call the ambulance the last time it happened as her SATS were low and she turned blue around the mouth and was having trouble breathing. We got through this one, but felt the dr. at the emerg. room misdiagnosed her again. My daughter took her to her ped the next day and they said the ER doctor had misdiagnosed her, but he gave her strong anti-biotic and we will never know what it was as testing was impossible after the anti-biotics. We think it may have been aspiration pneumo that time. It is all so confusing and keeps us on our toes all the time. Mara is a joy to us all and she is so strong when it comes to all she's been through and she just keeps on keeping on!! She has really taught us a lot. Thanks for trying to help us, we really appreciate all the help. I will let you know if they figure it all out. , grandma to Mara Quote Link to comment Share on other sites More sharing options...
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