Guest guest Posted January 13, 2005 Report Share Posted January 13, 2005 Darla, The other piece that I think they need to be looking at is if the " IG's " make a good response to the prevnar or pneumovax, tetanus, (there's one more and I'm blanking on it) vaccine. You can have a normal level of IgG's and yet they may still not work well. Typically, this is tested by drawing antibody titers after being vaccinated and then again in 6 months or so. Then they can tell if the body makes enough antibodies and if it can sustain making those antibodies or if the levels drop off after a few months or so. I have normal amounts of IgG (altho a little low) but my IgG can't make or sustain a good response to the pneumovax/prevnar. Now the implications of this is that many bacteria are made like those targeted in that vaccine (they are considered the polysaccharide coated bacteria)... so they know that I can't fight off those type of bacteria very well and, thus, I used to (prior to gammaglobulin IVs) get many many (almost continous) sinus infections. The other piece is - I assume they tested for subclass IgG. In other words, IgG1, IgG2, IgG3, and IgG4. You can have a low normal level of overall IgG, but make little or none IgG2 (like my son Sam) and be much more vulnerable to infections. Okay... I don't know about the other questions b/c supposedly Sam and I are non-mito.... my other son, Asher, is but at this point is not immune deficient. Hope this helps Anne R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2005 Report Share Posted January 13, 2005 Darla, Looking at her numbers again - I'd really want to know what her subclass IgG's are.... I hope they checked. A good website can be found by typine in Primary Immune Deficiency. HTH, Anne R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2005 Report Share Posted January 14, 2005 Darla, Wyatt has low IgG and IgA. We don't know how long he has been having immune problems. We stumbled across it by accident when he had his feeding tube put in. I agree with Anne to have her IgG subclasses tested along with her reaction to vaccinations. Wyatt's numbers are not absent but low end normal or just a little bit below normal. As soon as they realized he did not make antibodies to vaccinations they suggested doing IVIG. However since he has been fairly healthy we have decided to just do amoxicillian every day. Anne is also write in telling you to check out the primary immune deficiency website. It is a good one. Dawn also is a wealth of info. She helped me out in the beginning. Geri-Anne and Wyatt, Complex I -- In Mito , " Darla Klein " <honeybear50317@m...> wrote: > Zipporrah has been taking iron for the past 5-6 months (even though Dr. > Whiteman knows it can be a Mito toxin he recommended her taking it) and her > levels have some up very slowly to the low normal level. Her hemoglobin is > 12.3, iron 168, transferrin normal but don't have the number, and the > feritin is still only 12. Due to the fact that she constantly is fighting > viruses and isn't raising much quicker they ran some IGA, IGM, and IGG > levels. They said they are ok at present but in the low range so we may > need to run some immune system labs to see if she is dealing with issues > there. Her IGA is 38, her IGG is 488 (reference 400-1200), and her IGM is > 49 (reference 35-242). They said she definitely is on the lower end and > needs to be watched since she has been on iron so long with little change. > ??? To those who deal with these issues, what age did the issues show > for you and what were the levels your doctors began to worry and treat with > IVIG or other means? The doc did say the reference goes from infants up to > kids around 12 years of age so it is normal to be on the lower end, but yet > they said she is lower than they expected and desire her to be since being > on the iron supplement for so long. Any help here is appreciated. Anything > I should be looking for??? > > See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see > a photo look into what Mito looks like > Darla: mommy to > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G- tube, > hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, > bladder issues, wheelchair for distances, eye issues, autistic behaviors, > gastric emptying issues... > Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD, > dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive > phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, > hypertonicity, migraines, possible seizures, dumping syndrome, iron > deficiency, ... > Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & > Marquis (3), Joey & (12 months) (some with Mito symptoms) Quote Link to comment Share on other sites More sharing options...
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