Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Hi everyone,I posted for the first time the other day introducing myself and my daughter .I have spent the last few days reading back on past messages.Ihave started to wonder if is showing signs of another periodic Fever,HIDS.Our main problem is we for starters live in Australia,not to many reported cases on or other Periodic fever Syndromes.Our Paed has never seen another case of this,and a Professor at Westmead Childrens hospital incharge of Immunology has seen a few (less than 5) and has been the worst.We have had tonsills and Adnoids out.We use Ibuprofen,Peracetamol,Redipred (Prednisolone).We have tried Tagament(cimedidine)sorry about spelling.I have been ther like all of you and tried all I can and if I could do more and take this away for her I would. suffers from seizures when she temps we use Rectal valium or Midazolam after 5 minuites of fitting,followed by a trip to the ER to checked out. Symptoms are *Mouth ulcers(even in between episodes) *Foul breath *Vommiting,Diarrhea,Nausea,no eating during episodes yet heaps of fluid taken.Lots of Tummy pain. *Headaches and Moody,Cranky. *leg,knee and arm aches. *High fever,for some reason her hands and feet are very cold yet her body is hot,but her Forehead is really on fire. *A full Strawberry tongue and little red dots on the roof of her mouth,and red throat(still red over bit where tonsills were removed) *A slight chesty cough and a slight clear nose(this has only happened a few times) *A rash on her body similar to a heat rash but its not a heat rash (Hubby in a RN and knows the difference) Well that is Pretty much it I dont know if you think this is or something else.I would love to just hear your opinion.Does show Symptoms that others that have don't and if so then why.I wish I was in another Country that knew more about this.Awaiting your replys.Thanks for listening sorry it is so long.s mummy liz * Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Hi Liz, I have only posted once here before also, but I do come to read often. I just wanted to suggest haveing a look at NOMID, also in the same family of fever disorders, though is somewhat different to the majority of the disorders here in the group. In NOMID (aka CINCA) a big part of the manifestation often involve the joints and a form of meningitis associated with inflammation. Below are a couple links to look at that may give more information, even if it can help rule out something: nomidsyndrome/ http://www.nomidalliance.net/index.html I hope you are able to find something that can help your daughter, these diseases present such challenges. I am so thankfull for the internet, for many, this is ther first step in getting diagnosis and treatment! , 's mommy (2 years old with NOMID, mutation positive) > > Hi everyone,I posted for the first time the other day introducing > myself and my daughter .I have spent the last few days reading > back on past messages.Ihave started to wonder if is showing signs > of another periodic Fever,HIDS.Our main problem is we for starters live > in Australia,not to many reported cases on or other Periodic > fever Syndromes.Our Paed has never seen another case of this,and a > Professor at Westmead Childrens hospital incharge of Immunology has > seen a few (less than 5) and has been the worst.We have had > tonsills and Adnoids out.We use Ibuprofen,Peracetamol,Redipred > (Prednisolone).We have tried Tagament(cimedidine)sorry about spelling.I > have been ther like all of you and tried all I can and if I could do > more and take this away for her I would. suffers from seizures > when she temps we use Rectal valium or Midazolam after 5 minuites of > fitting,followed by a trip to the ER to checked out. Symptoms are > > *Mouth ulcers(even in between episodes) > *Foul breath > *Vommiting,Diarrhea,Nausea,no eating during episodes yet heaps of fluid > taken.Lots of Tummy pain. > *Headaches and Moody,Cranky. > *leg,knee and arm aches. > *High fever,for some reason her hands and feet are very cold yet her > body is hot,but her Forehead is really on fire. > *A full Strawberry tongue and little red dots on the roof of her > mouth,and red throat(still red over bit where tonsills were removed) > *A slight chesty cough and a slight clear nose(this has only happened a > few times) > *A rash on her body similar to a heat rash but its not a heat rash > (Hubby in a RN and knows the difference) > Well that is Pretty much it I dont know if you think this is or > something else.I would love to just hear your opinion.Does show > Symptoms that others that have don't and if so then why.I wish I > was in another Country that knew more about this.Awaiting your > replys.Thanks for listening sorry it is so long.s mummy liz > > * > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Do you by any chance know the name of the form of meningitis is? they will be testing my daughter for it and I would like to do some research on it. Thank you, Mother of Kiara 2 1/2 Dublin OH --------------------------------- New Messenger with Voice. Call regular phones from your PC for low, low rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Hi , I am only learning about this disease and I don't want to give you any misleading information, I am only a mom who is learning as I go. I do not want to appear that I am saying anything with any medical certainty as I am takeing what I was told, how I understand it. That public service announcement over, this is what I get from my experience! My son is affected by what I understand is " Chronic meningitis " this is consistent with many NOMID patients. This form is the result of inflammation allowed to persist over time, the signs are often subtle in comparisson but both cancause significant damage! In bacterial meningitis, which often develops rapidly and causes severe and unmistakeable illness within a short time. The chronic inflamation seen in NOMID is not limited to meningitis, children often suffer from inflamation in the lining of the heart and lungs, joints, stomach, you name it. In NOMID, the chronic meningitis/ high intercranial pressure/ inflammation is usually responsible for causing progressive vision loss, chronic headache, nausea, vomiting, light sensitivity, neck pain/stiffness and hearing loss. Does she have any symptoms? what test is she haveing? is it a spial tap (aka Lumbar puncture?) Since she is young, it has probably been tough to really gauge what is happening in her little body, thank goodness they get older and can give us hints! I hope some of the info is helpful. > > > Do you by any chance know the name of the form of meningitis is? they will be testing my daughter for it and I would like to do some research on it. Thank you, > > > > Mother of Kiara 2 1/2 > Dublin OH > > > --------------------------------- > New Messenger with Voice. Call regular phones from your PC for low, low rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Thank you and I do understand what you are saying. During her next episode she has to have a spinal tap and testing to see if she could have HIDS. Her symptoms are fever every two weeks, severe headaches( she cries and wants bandaids on her head), she wants no lights on, no eating or drinking, and she does not walk at all. She also complains that her feet and knees hurt. As for the spinal tap has your child had one? I was wondering since she is only 2 1/2 will they put her to sleep? I am so scared about that. well any info will help thank you. Clevenger Mother of Kiara 2 1/2 Dublin OH --------------------------------- Messenger with Voice. PC-to-Phone calls for ridiculously low rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 t hey will try to sedate her as it is easier.. especially if she is not feeling good.. Kiara wouldnt sedate for them to get one.. adn they were going to knock her right out.. but didnt. Re: Re: hids Thank you and I do understand what you are saying. During her next episode she has to have a spinal tap and testing to see if she could have HIDS. Her symptoms are fever every two weeks, severe headaches( she cries and wants bandaids on her head), she wants no lights on, no eating or drinking, and she does not walk at all. She also complains that her feet and knees hurt. As for the spinal tap has your child had one? I was wondering since she is only 2 1/2 will they put her to sleep? I am so scared about that. well any info will help thank you. Clevenger Mother of Kiara 2 1/2 Dublin OH --------------------------------- Messenger with Voice. PC-to-Phone calls for ridiculously low rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 has had 2 LP's now and did OK, his first was a bit better then the last one. He was sedated for both, they did a bunch of tests under sedation at once so it would be easier for him, and only one sedation instead of 4. The biggest challenge was trying to keep him laying down to avoid a severe post spinal headache. He had a rough time with the last sedation but doc thinks it was because he had to stay under sedation longer. > > Thank you and I do understand what you are saying. During her next episode she has to have a spinal tap and testing to see if she could have HIDS. Her symptoms are fever every two weeks, severe headaches( she cries and wants bandaids on her head), she wants no lights on, no eating or drinking, and she does not walk at all. She also complains that her feet and knees hurt. As for the spinal tap has your child had one? I was wondering since she is only 2 1/2 will they put her to sleep? I am so scared about that. well any info will help thank you. > Clevenger > Mother of Kiara 2 1/2 > Dublin OH > > > --------------------------------- > Messenger with Voice. PC-to-Phone calls for ridiculously low rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Aseptic Meningitis is what they look for with NOMID. Fran A Bulone Mom to ph 6 yrs old NOMID Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 In response to your question about IgD levels, Hannah, I know that some children/adults with HIDS have normal values, so the fact that the IgD level is normal is not enough to rule out HIDS. Often doctors checking for HIDS will recommend genetic testing for MVK defect and may also want to check for elevated mevalonic acid via urinalysis. Kate, Mom to Ben, 3 yrs old (diagnosed ; possible HIDS) Quote Link to comment Share on other sites More sharing options...
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