Guest guest Posted June 20, 1999 Report Share Posted June 20, 1999 .....Thanks ......he went to sleep....I made the mistake of panicking as I have never seen him so bad before....he'd just got back from a weekend with his dad (we're divorced) and in hindsight, it was probably a transition thing....though he seemed fine at first....very hungry....but ate nothing unusual for him..it was like he had a panic attack....anyway...touch wood, he's asleep now....thank you so much....Liz x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 1999 Report Share Posted June 20, 1999 Has he been off wheat and /or milk then suddenly ate some? My son has never been a " flapper " but has other stims which intensify if he gets wheat or milk. He ate bread yesterday and today went through a " chimpanzie " stage. So back to soda pop and corn chips for today. DMG has reduced stimming in my son almost completely, he has been on it for 7 months. He has decreased wheat and milk too, and started eating fish. For the interim, if nobody else has an immediate suggestion, try an Epsom salt bath and some OT (brushing, joint compressions, lights dimmed, Deep massage, and stuff your OT does). Good luck... HELP!!!! >From: Lizanj@... > >.Please any ideas....my son has been flapping his arms for two hours...it has >made his nose bleed even....I dont know what to do...I've given 2 paracetamol >suppositories and switched off all stimuli and sent him to bed.....he's still >flapping....the doctor says I know more than she does (!!)....I am >scared....is there ANY suggestions....please....thanks in advance.....Liz >Lucy. > >------------------------------------------------------------------------ >Got an opinion? > >Make it count! Sign up for the ONElist Weekly Survey now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 Liz, This may be your son's only way of processing the strong emotions he must be experiencing. My son has oftentimes been fine all afternoon after school, then at bedtime will cry for an hour about something that happened at school, or someone he misses so much. I always try to help him cry as long as he needs to because at those times it's the only way he can center himself and be in real time again. I just sympathize and bring Kleenexes. Hope this was any help at all! Re: HELP!!!! > From: Lizanj@... > > > ....Thanks ......he went to sleep....I made the mistake of panicking > as I have never seen him so bad before....he'd just got back from a weekend > with his dad (we're divorced) and in hindsight, it was probably a transition > thing....though he seemed fine at first....very hungry....but ate nothing > unusual for him..it was like he had a panic attack....anyway...touch wood, > he's asleep now....thank you so much....Liz x > > ------------------------------------------------------------------------ > What do lizards and rock music have in common? > > They both have communities at ONElist. Find yours today! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 I often used Dawn dishwashing liquid for bubble baths to calm my older son years ago. Then he " graduated " to the point that they would start as showers to create the bubbles and become the bubble bath. These had a very soothing effect on him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 Hi, guys! My buddy always hits the nail on the head! I was going to suggest a nice Epsom Salts bath, too. And, of course, lots of love. Missy HELP!!!! > > >>From: Lizanj@... >> >>.Please any ideas....my son has been flapping his arms for two hours...it >has >>made his nose bleed even....I dont know what to do...I've given 2 >paracetamol >>suppositories and switched off all stimuli and sent him to bed.....he's >still >>flapping....the doctor says I know more than she does (!!)....I am >>scared....is there ANY suggestions....please....thanks in advance.....Liz >>Lucy. >> >>------------------------------------------------------------------------ >>Got an opinion? >> >>Make it count! Sign up for the ONElist Weekly Survey now. > > >------------------------------------------------------------------------ >Campaign 2000 is here! > >Discuss your thoughts; get informed at ONElist. See our homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 In a message dated 6/22/99 5:32:24 AM GMT Daylight Time, evansc@... writes: > This may be your son's only way of processing the strong emotions he must be > experiencing. I think so too , but it's pretty severe and terrible....he just cannot stop flapping violently....we have all tried to flap as fast....cant do it....managed to redirect him for a bit today...( got him helping me to clean!) but the second he wasn't 'physically' engaged he was back to this terrible flap....hopefully it will stop soon...will give another few days....thanks...Liz. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 Dear Liz, I've read your posts with such concern. My heart goes out to both of you. I would just ask one thing: does your son have a means of communication? The reason I ask is my daughter had a similar episode when she came home from a visitation outing. She came through the door like a shot and for hours was just all over the place, could not get a grip on herself. (This did not include flapping, just frantic movement and sounds.) Not at all like her. At length I was able to get her to hold still long enough to ask her what was wrong. Finally, she typed about something upsetting that happened on the outing. She has been weeks in gradually getting over it and is doing better now. I had never seen her like that and suspected some sort of allergic reaction for it to be so intense. But it was the emotional impact of an upsetting event. I have to say, you are a beautiful mother, Liz. Peace. Betty McLaughlin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 Betty, maybe you missed my post re what happened; was diagnosed as having an inner-ear infection as well as a throat infection, he's unable to speak, but usually able to communicate what he wants....will go and get whatever it is/take me to it....he's very hyperactive and we've been unable to get much 'academia' from him....but he is a fighter and is extremely assertive!!!! (he hits/scratches/bites me if I pick up the 'phone....does this also to anyone he identifies as 'primary carer'....he's gotten a little bit too used to having one-to-one 'therapy' and is used to getting his own way)....I have tried my best...but haven't done a thing different than any other parent would....thanks anyway....all the best..Liz. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 You know, it just goes to show that when our kids scream there IS a reason. I'm glad you found out what was wrong. Margie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 You didn't say how old your son was, but perhaps counseling might be a good idea to incorporate into the IEP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 I also think that behavior modification should be included on the original child's IEP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 In a message dated 6/23/99 5:53:11 AM GMT Daylight Time, Virri345@... writes: > rom: Virri345@... > > I also think that behavior modification should be included on the original > child's IEP. > ......LOL....thanks but we've been doing 'Lovaas' for over 2 years...and as for counselling...my kid is not verbal and has too little receptive language to understand 'counselling'....thanks anyway. Liz. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 1999 Report Share Posted September 22, 1999 Beth, My heart goes out to you, and all that you are dealing with; go to Dr. Goldberg's website at www.neuroimmunedr.com; he has papers you can access there that will describe what neuroimmune dysfunction is Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 1999 Report Share Posted September 22, 1999 Beth, It really sounds as though you have your hands full! You might want to visit these websites: http://www.neuroimmunedr.com http://www.nids.net You will find more information about " " there, including the hypothesis statement (the scientific basis for the theory). Best wishes, Sandy sandy@... On 23 Sep 99 bmccallum@... ( <onelist>) wrote: > From: <bmccallum@...> > > Hi Axel ,Neil and all the rest of the group, > Please bare with me. Being new to this list, I am still feeling my > way. Axel, we live near the South Aussie border, and although I > would love to go to the conference in Melbourne, it is not possible > with the children. Please keep me updated with any info. It is great > to have others from Aussie on the list as I am in several groups and > the only Aussie, but please, all my good email friends from America > etc, I feel priveledged to be able to get to know you all as well. > I joined this group because of the medical problems that I have with > my son and grandson. As I said in my intro, 's condition is > very rare. Basically PHHI kids are born with twice the normal amount > of insulin producing cells as a normal person. Where as most common > Hypoglycaemics react to foods, 's body continuously pumps out > too much insulin,and this in turn has caused brain damage :-(( > About 60% of kids with this condition are disabled in different > ways, eg Cerebral Palsy, severe DevelopHayden, my grandson, on the > other hand, had his mother walk out on him when he was 3 weeks old. > We have raised him ever since. He has had severe Asthma and Exzema > since he was 5 weeks old. My concerns with him at present is that he > is a very distant child, who has quite bad speech problems, is bowel > incontinent and still wets often even though we have done everything > possible to train him, is obsessively tidy and although he appears > to be quite intellegent, (he is a whiz at Nintendo and on the > computer andMy best friend is also raising her grandson, who has > ADHD and Aspergus Syndrome and she can see alot of Asp. Syndrome > characteristics in Hayden. His mother is also a very distant person > who cannot stand to be touched and cannot bond to her children (she > has 4 children now, and Hayden and his older brother are both with > grandparents. The older boy was severely abused eg multiple > fractures, bruises, burns etc, when he was 4 months old, which I > know the mother did.) We have an appointment with a specialist > Could someone please explain what Neuro Immune Dysfuntion Syndrome > is..... and what are the symptoms and conditions that it causes. > With Haydens allergy conditions, I would be interested if these > have any bearing on what is wrong with him. I don't know if all of > the above fits into the group, but I would like some opinions if > anyone has any. We are a very loving and caring family, and we just > can't understand why Hayden is having all these problems. Any > suggestions?????/ Beth ô¿ô > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 1999 Report Share Posted September 23, 1999 Please unsubscribe me from this list. msbufkin@... Help!!!! > From: <bmccallum@...> > > Hi Axel ,Neil and all the rest of the group, > Please bare with me. Being new to this list, I am still feeling my way. Axel, we live near the South Aussie border, and although I would love to go to the conference in Melbourne, it is not possible with the children. Please keep me updated with any info. It is great to have others from Aussie on the list as I am in several groups and the only Aussie, but please, all my good email friends from America etc, I feel priveledged to be able to get to know you all as well. > I joined this group because of the medical problems that I have with my son and grandson. As I said in my intro, 's condition is very rare. Basically PHHI kids are born with twice the normal amount of insulin producing cells as a normal person. Where as most common Hypoglycaemics react to foods, 's body continuously pumps out too much insulin,and this in turn has caused brain damage :-(( About 60% of kids with this condition are disabled in different ways, eg Cerebral Palsy, severe Developmental delays where they still can't walk / talk at the age of 5 etc. has behaviour problems and can be very demanding. > Hayden, my grandson, on the other hand, had his mother walk out on him when he was 3 weeks old. We have raised him ever since. He has had severe Asthma and Exzema since he was 5 weeks old. My concerns with him at present is that he is a very distant child, who has quite bad speech problems, is bowel incontinent and still wets often even though we have done everything possible to train him, is obsessively tidy and although he appears to be quite intellegent, (he is a whiz at Nintendo and on the computer and at working things out) doesn't seem to understand basic things that he should for his age. We feel that he is definitely developmentally delayed, but he simply amazes me sometimes how quick he picks up technology as he is never shown how to use the programs on the computer, he just sits down and does it. > My best friend is also raising her grandson, who has ADHD and Aspergus Syndrome and she can see alot of Asp. Syndrome characteristics in Hayden. His mother is also a very distant person who cannot stand to be touched and cannot bond to her children (she has 4 children now, and Hayden and his older brother are both with grandparents. The older boy was severely abused eg multiple fractures, bruises, burns etc, when he was 4 months old, which I know the mother did.) We have an appointment with a specialist next week. > Could someone please explain what Neuro Immune Dysfuntion Syndrome is..... and what are the symptoms and conditions that it causes. With Haydens allergy conditions, I would be interested if these have any bearing on what is wrong with him. I don't know if all of the above fits into the group, but I would like some opinions if anyone has any. We are a very loving and caring family, and we just can't understand why Hayden is having all these problems. Any suggestions?????/ > Beth ô¿ô > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 i really don't know why the pills over the injections. i am so confused. i asked her if i had ra or what? she said it's a form of ra called spondyloarthropy. she wants me to bring back my x-rays. she said my bone scan really didn't dring anything up about my back. i told her the x-rays were about 2 yrs old. she said it didn't matter. so now i have to drive back again. kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Why did the doctor say oral MTX over injections, especially if you are worried about your GI tract, Kathy? Can you explain what she meant about the RA and spondyloarthropathy? ----- Original Message ----- From: <kringlemom@...> < > Sent: Monday, March 19, 2001 12:41 PM Subject: [ ] help!!!! > ok you guys on mtx, i need you input!! they are gonna add me on methotrexate > and folic acid added to my enbrel, if that doesn't work it'll be remicade for > me. as far as work she doesn't think i am disabled enough for social security > and is gonna work with my employer re job restrictions. she did however keep > me home for another month. i guess my main concern is the stomach side > effects, maybe because of what i just went through with the relefan. i asked > about injections but she said no, pills. yippee more drugs to take. by the > time i get back to work my job will be gone. or just a few weeks away. she > said i have a form of rheumatoid arthritis. spondyloarthropy, and obviosly > something else going on and she is happy i am going to the urologist. also > b/p still up 140-94. any info on these new drugs w/b most appreciated. thanks > > > > > > kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Kathy, I take oral mtx and folic acid. The only problems I've ever had are mouth ulcers so we increased the folic acid. My advice is to take it at night (so you sleep through any problems) and I take mine on Sat so if I am tired on Sun I don't have to miss work or have the extra stress of going to work too tired. Good luck, I hope this works for you. Tery - FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Kathy, I just took my first injection of mtx yesterday and I'm also on Enbrel. I am really upset that your doctor wouldn't give you injections. It is not only more effective, it has less GI side effects. I tried the oral mtx and was doubled over in pain from severe cramps, had constant diarrhea and nausea. My doctor told me I'd get used to it, and I was like that for 3 months until I finally said no more. I was never offered injections and didn't know it was an option. I am shocked that after your last experience with Relafen, that she wouldn't give you injections. I think if I were you I would insist. a ----- Original Message ----- From: kringlemom@... Sent: Monday, March 19, 2001 1:41 PM Subject: [ ] help!!!! ok you guys on mtx, i need you input!! they are gonna add me on methotrexate and folic acid added to my enbrel, if that doesn't work it'll be remicade for me. as far as work she doesn't think i am disabled enough for social security and is gonna work with my employer re job restrictions. she did however keep me home for another month. i guess my main concern is the stomach side effects, maybe because of what i just went through with the relefan. i asked about injections but she said no, pills. yippee more drugs to take. by the time i get back to work my job will be gone. or just a few weeks away. she said i have a form of rheumatoid arthritis. spondyloarthropy, and obviosly something else going on and she is happy i am going to the urologist. also b/p still up 140-94. any info on these new drugs w/b most appreciated. thanks kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 i don't know who was more confused, me or her!! here we are talking about the relefan and how that puts a damper on what i can take and i let her put this on me. she has tried it before and i said no. i guess i am just trying to get some life back. then she tells me my employer is really looking to work with me. work 15 min, 15 min break. that i would be off for periods of time because of my disease. i said see, what kind of reliable full time employee am i. i told her what the pt said about not doing any desk work and she said that was wrong. then she mentions to send me to physical therapy again and i reminded her the last time we did i ended up needing shots in my neck!! is there a big price difference in the pills vs shots?? kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 thanks tery, i'll try it!! kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 i really don't know either, and when she looked at her watch.......but she was voted one of the top dr's in chicago!! kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 but if my tummy is still recovering from the relefan. i felt rushed at the end. kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 I wondered why he said no to injections, also. I thought they were supposed to be just the thing if you couldn't tolerate the pills. Also read that the shots were actually cheaper but have not had the opportunity to check into it more. My reference is the March/April issue of Arthritis Today, page 74, The " On Call " column; The question was: " I have heard that is possible to take injectable methotrexate by mouth and that it costs less than taking oral methotrexate. Is this correct? If so, how can my doctor determine the best dosage of injectable methotrexate? " Answer: " You heard right. One dose of injectable methotrexate costs about one-third as much as the same dose of generic methotrexate tablets. This pricing difference may be due to the fact that injectable and oral methotrexate for arthritis are the same, so your doctor would probably switch you to the same dose as your injection, then monitor your response as usual. If you switch fro a tablet to an injectable form of methotrexate, you may want to have your pharmacy draw up the correct dose into a syringe ahead of time. When the time comes to take the medication, you would squirt it into an eight-ounce glass of water and drink it. Alternatively, you may ask your pharmacist about specially formulated syrup to help dilute the medication. Of course, you should talk to your physician about the best way to take methotrexate. If taking the drug orally causes you stomach upset, the best way to take injectable methotrexate is the way in which it was intended-by injection. " ---- R. , PharmD Pharmacist Probably more info than was needed but I found it helpful. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 I have taken MTX and folic acid for about 5 yrs now...no problems except for mouth sores and now they get under control with folic acid....no upset stomach..Judy in AZ Quote Link to comment Share on other sites More sharing options...
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