Guest guest Posted June 12, 1999 Report Share Posted June 12, 1999 We can't do erythromycin. I ended up in the hospital with severe cramping like labor pains and was told it was a reaction to the medication. S. Re: Note Books > > >Laurie, > >The trovan is liver toxic, even to healthy folks without mito it can cause a problem. I also wondered if >there was something else about it that was bad for mito, as I had a very bad experience with it, but I don't >have clarification on that. > >amino glycocides are antibiotics I believe. > >and one question for you: what have you heard about erythromycin? I hadn't heard that. > >I have heard to avoid gentamycin because of the potential for neuromuscular blockade in susceptible >individuals. > >I also heard that the part of augmentin that makes it last longer - the clauvenic (sp?) acid, causes some >mito problems in some people. > >Thanks for posting the list, >Jeannine > >Laurie wrote: > >> These are the medications that I have listed. The list grows as they discover new meds that are not mito >> friendly. There also may be others, but this is what I have listed: > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 1999 Report Share Posted June 12, 1999 We can't do erythromycin. I ended up in the hospital with severe cramping like labor pains and was told it was a reaction to the medication. S. Re: Note Books > > >Laurie, > >The trovan is liver toxic, even to healthy folks without mito it can cause a problem. I also wondered if >there was something else about it that was bad for mito, as I had a very bad experience with it, but I don't >have clarification on that. > >amino glycocides are antibiotics I believe. > >and one question for you: what have you heard about erythromycin? I hadn't heard that. > >I have heard to avoid gentamycin because of the potential for neuromuscular blockade in susceptible >individuals. > >I also heard that the part of augmentin that makes it last longer - the clauvenic (sp?) acid, causes some >mito problems in some people. > >Thanks for posting the list, >Jeannine > >Laurie wrote: > >> These are the medications that I have listed. The list grows as they discover new meds that are not mito >> friendly. There also may be others, but this is what I have listed: > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 Re: Notebooks I have an entire library of notebooks on Alycia. I have Alycia's Medical Notebook which has all the specialists reports, test results, developmental milestones etc. filed by specialty. I have another notebook devoted to her IEPs which includes her evaluations and IEPs (I store the older files in a fire proof can for reference as the notebook is getting a little thick). I have another notebook for Resources which is divided by catagories such as SPED laws, Adaptive Equiptment, Schools, Professional Associations (MDA, UMDF etc), Funding resources and so on. I have a note book for Mito list emails that I feel are a good reference. I have a book for my UMDF newletters. I have a book devoted to homeschooling ideas. Finally, I have an accordian file for journal articles which is segmented by catagory such as vision, hearing, gastro-intestinal, learning disabilities etc. As this file gets larger I suppose I am going to have to buy note books for each catagory<grin>. My resource library takes up half of our office! Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 Your welcome. Lori Hilandgang@... wrote: > From: Hilandgang@... > > Lori, > WOW! Have you just given me inspiration! I am logging off after reading my > postings and getting busy organizing. The UMDF newsletters I had never > thought of. Bet Dr Stein is going to love this. Thanks for the idea. > > ruth > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 Lori, WOW! Have you just given me inspiration! I am logging off after reading my postings and getting busy organizing. The UMDF newsletters I had never thought of. Bet Dr Stein is going to love this. Thanks for the idea. ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 Dear Anne, Again, more great ideas. Thanks. Maybe we could make up a prototype and give it to hospitals, regional centers, etc to give to patients who have been newly diagnosed with chronic disorders. This way, other parents don't have to reinvent our wheel! ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 Dear Anne, Again, more great ideas. Thanks. Maybe we could make up a prototype and give it to hospitals, regional centers, etc to give to patients who have been newly diagnosed with chronic disorders. This way, other parents don't have to reinvent our wheel! ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 I think the note books are a great idea. Another thing we use though is having something more concise in hand for trips to ER and the doctor. Things included are: emergency numbers, (parents and 1-2 contacts) list of drugs and doses and route given, (i.e. periactin, 3 mg. (5cc), 2x/day, J tube) precautions, (i.e. No lactated ringers, cortisol dependent, has a central line, etc.) diagnoses, (short and to the point here. - you don't need to list every diagnosis ever given but the important ones. For example, I do not have on there tibial torsion or high arched palate or such for my sons - only things relative to medical care) List of pediatrician/primary care doctor and all specialists and their phone numbers and where they practice. This is very important to have in an emergency but also to have in the front of your child's chart at the hospital for each admission. It is quick and easy to look at. I can tell you after multiple admissions, and just coming home from a 4.5 month one that the docs and residents, no matter their intentions, do not have the time to read all sorts of things. I found this really helpful. Not only for the admitting doctors but all the consults and anesthesiology as well. With anesthesiology, they did not have to hear about MH precautions and lactated ringers after they had already set up the room...they were prepared for once. It also made it that much more easier for our docs to contact docs not on staff there because the numbers and names were right at their finger tips. I had so many positive comments on it from the docs, because it was so concise yet pertinent. Our hospital, specifically our ER, very interested in instituting this for all kids with chronic conditions. As well, my kids are on 10-15 meds each, not counting the supplements....let me tell you how appreciated it is at the clinic visits when they can just copy it and place it in the chart in stead of asking me what meds they are on and then writing them all down. If I don't have time to update it, we can just write in the changes at the clinic appt. Anne, mom to: Brittany, 12, Zachary, 7, , Abby, 6 and , 26 months ***Mitochondrial encephalomyopathy, (complex 1 and 4 OxPhos defect)*** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 I think the note books are a great idea. Another thing we use though is having something more concise in hand for trips to ER and the doctor. Things included are: emergency numbers, (parents and 1-2 contacts) list of drugs and doses and route given, (i.e. periactin, 3 mg. (5cc), 2x/day, J tube) precautions, (i.e. No lactated ringers, cortisol dependent, has a central line, etc.) diagnoses, (short and to the point here. - you don't need to list every diagnosis ever given but the important ones. For example, I do not have on there tibial torsion or high arched palate or such for my sons - only things relative to medical care) List of pediatrician/primary care doctor and all specialists and their phone numbers and where they practice. This is very important to have in an emergency but also to have in the front of your child's chart at the hospital for each admission. It is quick and easy to look at. I can tell you after multiple admissions, and just coming home from a 4.5 month one that the docs and residents, no matter their intentions, do not have the time to read all sorts of things. I found this really helpful. Not only for the admitting doctors but all the consults and anesthesiology as well. With anesthesiology, they did not have to hear about MH precautions and lactated ringers after they had already set up the room...they were prepared for once. It also made it that much more easier for our docs to contact docs not on staff there because the numbers and names were right at their finger tips. I had so many positive comments on it from the docs, because it was so concise yet pertinent. Our hospital, specifically our ER, very interested in instituting this for all kids with chronic conditions. As well, my kids are on 10-15 meds each, not counting the supplements....let me tell you how appreciated it is at the clinic visits when they can just copy it and place it in the chart in stead of asking me what meds they are on and then writing them all down. If I don't have time to update it, we can just write in the changes at the clinic appt. Anne, mom to: Brittany, 12, Zachary, 7, , Abby, 6 and , 26 months ***Mitochondrial encephalomyopathy, (complex 1 and 4 OxPhos defect)*** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 Another thing is allergies which I forgot since my kids don't have any fortunately. But speaking of which - our doctors do have the nurses put the yellow allergy bracelets on the kids and write lactated ringers on it. No, not an allergy per se but it makes sure that they won't be given since their lactic acids are high enough without the LR. They also have the big allergy alert thing for LR on the cover of the chart along with MH precautions. Really helps. Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 Ruth, that is excellant thinking! Re: Note Books >From: Hilandgang@... > >Dear Anne, >Again, more great ideas. Thanks. Maybe we could make up a prototype and >give it to hospitals, regional centers, etc to give to patients who have been >newly diagnosed with chronic disorders. This way, other parents don't have >to reinvent our wheel! > >ruth > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 Anne, thank you for listing what you put on your emergency papers. We do something similar, but you gave me some more ideas. I also have a portfolio (soft-sided briefcase) that has a 3 ring binder in it. I use divider tabs to separate Savannah's medical papers, labeled for example - labs, MRI, Radiology, EEG... And then dividers for each specialist to put their evaluations- Neurology, GI, Genetics... I put all these papers in those clear sheet protectors which keeps them for being crumpled up or torn out. This has been very beneficial for us. I take it to every doctors appointment, surgeries, MRIs, any procedures, emergency trips, known hospitalizations and on vacation with us. When a doctor says something like, " It would be nice to know how her xyz level has been " , I can flip to that section and pull it out. This helps because most doctors will want any information they don't have and that takes a few days (weeks!) to have it sent. And just looking like you know what your doing (even though I don't )), makes the medical community take you more serious. Last October, we were on vacation in another state when Savannah started running one of her high fevers. We finally ended up in the emergency room several hours later. I opened up my portfolio and told them what labs we needed to order, since the doctor could see hard copies of all these prior lab results, he ordered them without question. He did this before he even called her Neurologist, as it was 1:30 AM in Arizona. As most of you know, some of these lab test aren't the usual labs they would run. And they even sent them out to labs in other states that our neurologist likes them ran. I know this isn't the norm for most emergency rooms and emergency doctors and so I'm not saying that JUST because I had my *portfolio* that's why we had the results we did, but I do think it helps! Savannah is only 3 years old, so she hasn't accumulated the amount of medical papers that many of you parents have with your older children. This portfolio is getting heavy, I'm going to have to sort through it and make a separate binder for home that has older, less important papers! I hope this helps some of you and that I didn't ramble on too long! hahahaha! > I think the note books are a great idea. > Another thing we use though is having something more concise in hand for > trips to ER and the doctor. Things included are: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 Anne, thank you for listing what you put on your emergency papers. We do something similar, but you gave me some more ideas. I also have a portfolio (soft-sided briefcase) that has a 3 ring binder in it. I use divider tabs to separate Savannah's medical papers, labeled for example - labs, MRI, Radiology, EEG... And then dividers for each specialist to put their evaluations- Neurology, GI, Genetics... I put all these papers in those clear sheet protectors which keeps them for being crumpled up or torn out. This has been very beneficial for us. I take it to every doctors appointment, surgeries, MRIs, any procedures, emergency trips, known hospitalizations and on vacation with us. When a doctor says something like, " It would be nice to know how her xyz level has been " , I can flip to that section and pull it out. This helps because most doctors will want any information they don't have and that takes a few days (weeks!) to have it sent. And just looking like you know what your doing (even though I don't )), makes the medical community take you more serious. Last October, we were on vacation in another state when Savannah started running one of her high fevers. We finally ended up in the emergency room several hours later. I opened up my portfolio and told them what labs we needed to order, since the doctor could see hard copies of all these prior lab results, he ordered them without question. He did this before he even called her Neurologist, as it was 1:30 AM in Arizona. As most of you know, some of these lab test aren't the usual labs they would run. And they even sent them out to labs in other states that our neurologist likes them ran. I know this isn't the norm for most emergency rooms and emergency doctors and so I'm not saying that JUST because I had my *portfolio* that's why we had the results we did, but I do think it helps! Savannah is only 3 years old, so she hasn't accumulated the amount of medical papers that many of you parents have with your older children. This portfolio is getting heavy, I'm going to have to sort through it and make a separate binder for home that has older, less important papers! I hope this helps some of you and that I didn't ramble on too long! hahahaha! > I think the note books are a great idea. > Another thing we use though is having something more concise in hand for > trips to ER and the doctor. Things included are: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 In a message dated 7/30/99 4:45:39 PM Eastern Daylight Time, lfitzger@... writes: > I have a list that I carry in my purse. I will send it tomorrow morning. Our > heat index is over 110 and I > don't want to leave the room with air conditioning until it cools off a bit. > I do remember that the > myacin antibiotics are on there. > > Do you have the Exceptional Parent booklet for Parents or the one for > Physicians? They have information > about the risk of anesthetics. > > Laurie Gee, I'll bet you all get *so* tired of repeating yourselves! But, I'm taking the risk here and asking: what are the Exceptional Parent booklets?? I have recently subscribed but have no idea about the booklets. Also, I had seen mention of a prior series they did on mito disease and wish I could get copies for myself and my doctor. I checked with them on their website and they said I could buy back issues but I'm not sure when that series ran. Thanks for offering to send me the list of things to avoid. I have been searching the internet for whatever I could find since we got the diagnosis but have not run across such a list yet. I don't remember where you live but we've got about the same heat index here in Tennessee - it's been oppressive. I'm certainly in no hurry so whenever you get around to it would be great and thank you again! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 - I even use the little colored post-it tabs to highlight certain things, since I can write on them. I have had to take out the older things and leave the most recent stuff. It has worked fine that way. Laurie > I also have a portfolio (soft-sided briefcase) that has a 3 ring binder in > it. I use divider tabs to separate Savannah's medical papers, labeled for > example - labs, MRI, Radiology, EEG... And then dividers for each > specialist to put their evaluations- Neurology, GI, Genetics... I put all > these papers in those clear sheet protectors which keeps them for being > crumpled up or torn out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 - I have a list that I carry in my purse. I will send it tomorrow morning. Our heat index is over 110 and I don't want to leave the room with air conditioning until it cools off a bit. I do remember that the myacin antibiotics are on there. Do you have the Exceptional Parent booklet for Parents or the one for Physicians? They have information about the risk of anesthetics. Laurie If anyone is so inclined, I'd love to hear any other things I should make > note of. I have always kept a current " " document that we keep handy for > ER visits Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 Dear Lori, Anne, Jeannine, , and all you other smarties: Slow down--you're making my brain hurt with all of these ideas :} I especially love the life plan, the favorite books & games, and the daily schedule. I'm inspired, but suddenly feeling rather inadequate as a mom......:} Thanks again. ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 Dear Lori, Anne, Jeannine, , and all you other smarties: Slow down--you're making my brain hurt with all of these ideas :} I especially love the life plan, the favorite books & games, and the daily schedule. I'm inspired, but suddenly feeling rather inadequate as a mom......:} Thanks again. ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 , I would check with your physicians and make sure they agree with the following but our docs have this noted for our children: ***Obtain a lactic acid level and serum bicarbonate when sick, trauma, having surgery or experiencing a change in status. Treat accordingly with J tube or IV bicarbonate and IV acetate in TPN ****Consider not running less dextrose in IVF than D10 . Check blood glucose prn ***absolutely no lactated ringers as this child has lactic acidosis chronically *** MH precautions ***Consider not using propofol as an anesthetic due to the fact that it is carried in lipids and this child receives intralipids. It also has the minimal potential to cause metabolic acidosis - although rare this child suffers from chronic metabolic acidosis and anesthesia does not recommend it's use. ***No Valproic Acid ***Cortisol dependent - will need stress doses of **hydrocortisone** and maintenance doses as well. (this one specific to Zach and not Mito) Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 KnoxVolNut@... wrote: > If anyone is so inclined, I'd love to hear any other things I should make > note of. , I keep a small notebook in a back pack and take it with us whenever we go anywhere with Caitlin. This back pack is comparable to a diaper bag that those with younger children might carry. In it, there are extra meds for an emergency, or for an emergency admission that would at least get us through the first 24 hours, since many of Caitlin's meds aren't typically found in the pharmacy and have to be ordered. I also keep all the supplies that I need to get thru a day with her care. For Caitlin that entails, glucometer, BP cuff, stethoscope, thermometer, etc.. as well as the things that I need to keep track of her fluid I & O and to measure with. In the notebook there are several sections. 1) a daily schedule of what we do when, this can also include regular appointments with PT, OT etc... 2) Med sheet. This lists all the meds and supplements that she takes and the dosages and times. There is a second sheet that also lists a schedule that has each med listed at the particular time that it's given. When she's been hospitalized this makes it much easier to keep her on her own schedule. This also contains the drugs that she is either allergic to, or the ones that have caused adverse reactions. 3) The next section details the daily schedule. In other words it lists all the things that we do and why, as well as what measures should be taken if there is a problem. For example, it lists that her vital signs must be checked at certain intervals, and then goes on to list at what point medical intervention is needed. (BP under 90) 4) The next section contains an updated summary letter or letter of protocol on Caitlin. The ped updates this as needed or every other year or so. This is used if we are in need of medical help and out of town, or he is unreachable. He lists his name, and phone number as well as beeper number here, so that if we are traveling he can be of assistance. This letter mentions the " mito " related issues that need to be addressed, should an emergency arise and he is not available. We also keep other summaries from the Neuro or other specialists in this section as needed. 5) The last section is a time line, or sort of a summarized medical history of the accumulation of significant symptoms, evaluations, hospitalizations etc... There is about a page for each year of age - Caitlin's history is quite complicated. All of this is in a flexible vinyl notebook and kept in the back pack. It has come in handy many times. The entire notebook is not excessively long and can be read within a reasonable amount of time. Vital information that might make a difference in her care in an emergency is there and it wouldn't take hours to sift thru it to find it. It is also a great outline of her care, should something happen to me, and someone else need to take over her care. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 Laurie, Me too! I wish I was the one who invented those post-it notes:) And the different colored flags are great, too. > I even use the little colored post-it tabs to highlight certain things, since I can write on them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 - Whoever did invent the post-it things must be a rich person. I don't how I ever lived without them. Laurie > Me too! I wish I was the one who invented those post-it notes:) And the > different colored flags are great, too. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 - Whoever did invent the post-it things must be a rich person. I don't how I ever lived without them. Laurie > Me too! I wish I was the one who invented those post-it notes:) And the > different colored flags are great, too. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 - Whoever did invent the post-it things must be a rich person. I don't how I ever lived without them. Laurie > Me too! I wish I was the one who invented those post-it notes:) And the > different colored flags are great, too. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 Ruth- Don't feel inadequate, most everyone has developed their ideas out of need or by hearing how someone else does it. I didn't have my records organized until others started telling out their system. I still did nothing for awhile, thinking that as an adult I didn't need to do that. I felt I could remember what I needed to tell the doctors. I decided differently when I started gathering. I had a car accident 2 months ago and had a concussion. After being taken to the hospital by ambulance and not being able to give the doctors even what meds I took, I have sent for a medic-alert bracelet. Laurie > Slow down--you're making my brain hurt with all of these ideas :} > > I especially love the life plan, the favorite books & games, and the daily > schedule. I'm inspired, but suddenly feeling rather inadequate as a > mom......:} > > Thanks again. > > ruth > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.