I have a special needs son (age 23) that has been acting out with screaming tantrums. It seems to have gotten worse lately. The doctor started him on Deplin 7.5. My concern is the potential interaction with his daily meds which are Tegretol, Phenobarb, and Depakote. None of these meds are given for mood, but for his seizure disorder which is now under control. Has anyone had experience with Deplin helping screaming tantrums for a non-verbal CP diagnosed child?
Thanks,
Eula
mine just went up to 10.5 But now my glucose is down, Need to work on my appetite, was thinking about you earlier and how you are coping!
Thanks for the info .. I'll look into that. Yes, hanging in there. It's not been too bad .. just kind of going on the Carpe Diem principle. When I'm having a good energy day enjoy it and accomplish what I can while it lasts .. when my energy is low, rest up as needed. I find the walking to work actually helps my energy, still cold enough to be invigorating and the fresh air does me good. Then, as others have noted, once I'm at work the busyness keeps my mind occupied with other things and I just pace myself as best I can. On the whole, I'd say I feel pretty good really.
I will look into those "B"'s and thanks for your thoughts. Hope you are hanging in there yourself!
Trish
Hello! Are you hanging in there? It's quite a ride when the anemia comes on so fast, huh?
On the folic acid thing...I do take it, but only because my body has trouble absorbing it in the first place...And it will help replace the trashed red blood cells, but will not make them last longer...If you do take it, take a quality B-100 vitamin instead with 400 mg of the folate in it...It has necessary things that help your body cleanse and heal itself, and immune strengtheners...The B vitamins are water soluble, so, unless you are horribly overdosing, or become really dehydrated, there's not much concern about getting "too much"..I find I "bounce back" a bit quicker when I'm faithfully taking my B's...Hope this helps!
Sorry for the confusion. My PCR/VL's are done in Texas as well and CBC same.. I mistakenly referred to CBC as PCR in last post. So my rave was actually in relation to CBC, ie chemistry and haematology. Thanks for asking Trish, I'm doing okay, I feel a little guilty about the minimal sx, but this comes at a price, I imagine. Starting to get a few itchy spots from the riba, They say that hot baths can exasperate the condition, however I'm not prepared to give my tub up at this stage as it seems to be my only vice these days. Regards Emi
So nice to see you, Emi. :) You're such a sweetheart with the information. You know, I don't know what MCV is. I will have to look that up.
I'm thinking, Emi, that we get two tests. Once is a CBC, Complete Blood Count. That's the one that, at least for SG and I, comes from Georgia in the U.S. and tells us all that stuff about our HGB, ANC, etc. I found this doc a little while ago that gives some good info on explaining all the parts of a CBC:
http://www.cc.nih.gov/ccc/patient_education/pepubs/cbc97.pdf
Then the PCR .. that's what tells us our viral load. That's a Polymerase Chain Reaction test. I think that's the one that comes from Texas for us.
Any idea if your tests are coming from the same place? My Trial Co-ord nurse said she thought some of them were coming from Europe.
You are right .. the results go up and down.. and no, I promise, will not panic.
It has occurred to me too that I could be UND/RVR already .. but will wait for actual results. Thinking I'll be a puddle if I get the word that it's a yes.
How are you doing, Emi? Holding up okay?
Take care....waiting on your next results too.
Trish
I will find out for sure which heamatology are measured and which ones are correlated through those measurements. Results go high and low throughout tx, so it would be useful to know this information. So not to panic when we get a H or L alongside our results. Regards Emi
Hi Trish,
I had a look around and couldn't find any evidence in terms of research, reports etc. I had a discussion with my Prof. the other day about folic acid and b12, however it was in relation to my MCV count which is 1 unit over at 98 range being 79-97. He explained to me that MCV was the width or circumferance?? of the RBC and if the iindicator got to say 160 he would consider given folic or b12. However this is a little different to your situation but sort of related I guess. Another interesting thing that the Prof told me was that PCR testing only measures a limited number haematology indicators such as neuts, RBC, WBC, Plates and HGB etc and all the other indicators are calculated on these measurements and therefore are not an exact reading so to speak. Interesting stuff I think. So I suspect that ANC for example is just a calculation of those measurements and in particular neuts and neuts abs. Anyway sorry for the rave, I've just had shot no 6 and I get a bit of a charge from it. Do you realise that you are more than likely UND and have been for a week or so. I am so pleased. Regards Emi
MCV
or, very obliquely....has anyone ever tried Deplin? ( l-methyfolate?) It's described as a "medical food" and it's proscribed for depression...google it, kinda interesting...my new psychiatrist ask that I try it, but I want to see if anyone's here tried it before...thaks
I think your decision is a wise one. I have read of benefits form folic acid but I have also read that there may be harmful results from overdosing and sometime masking a b12 deficiency. I think I also saw something about cognitive issues but I am not at all sure about that. I play it as safe as I can with stuff like this and my transplant center doesn't like too many supplements anyway. I have enough pills without adding anything - but, I do take omega 3. Did you ever smell a jar of omega 3? If you haven't do yourself a favor - don't! Mike
Thanks for that, Mike. I won't be adding it at all on a "can't hurt" basis because I don't see it helping in any way. I have enough "additives" at the moment. I'd rather take peanut butter cups if I'm going to take something that isn't going to help.
My other concern is being told this in the first place, considering the source. It means others will get the same information and will think they're helping themselves, will likely notice no difference and possibly continuing drop and basically they're taking a placebo. Not sure I like that situation at all.
Trish
I know that a lot of people have taken it during TX but I have never seen any evidence that it can, in anyway, offset or aid with hemolytic anemia. But, I think you're right that it probably can't hurt you either. Mike