Guest guest Posted June 3, 2000 Report Share Posted June 3, 2000 Welcome ! It is hard to get diagnosed properly even when your child doesn't have other factors like your son's autism. In our expericence, my son's previous doctors treated symptoms forever and then once asthma was diagnosed blamed everything on that. Until his asthma was under control and he was still getting sick. It is kind of like peeling an onion...so far in our journey we are halfway through the onion, tears and all. We have half a diagnosis and will see another doctor on Monday for the other half... I hope. Otherwise we need to go to Mayo or Rainbow Babies. So far my son Kody has IgG def. 2 & 3 (his numbers are pretty non-existant) and steriod dependant asthma. He is also very small (skinny) and lately kinda tall. He weighs 35.5 pounds and is 45 inches tall. He needs a size 5 for length but a 2 for the waist...try shopping for this kid! He usually only wears one brand of pants...sometimes I think people think he only owns one pair of jeans, but really I just can't find others that fit! You will get a lot out of this list, the information alone is so valuable but the support is priceless. Diane, mom to Kody age 4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2000 Report Share Posted June 4, 2000 Dear , My heart goes out to you. It is tough enough to deal with CVID, but when your child is unable to speak it just makes it that much more difficult. My son was also diagnosed with CVID around the same age as your child. Hang in there. Always feel free to vent or ask questions. We are here to support you. Take care. Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2000 Report Share Posted June 4, 2000 , Hi, I'm Jan . Mom to Ben with CVID and Shwachman's Syndrome and with allergies and asthma. Sounds like you and Jamey have had some rough times, but he is lucky to have a dedicated, loving, and capable Mom. Best Wishes. Jan, Ben age 12, and age 9 Mich2minn@... wrote: > Hi, > My name is --live near Minneapolis--and have a 14 year old son who's > just been diagnosed with CVID. I've been reading the archives and this list > for about two weeks. > > Your stories and past emails have given me so much insight and knowledge. I > am deeply grateful for this as my son, Jamey, is also autistic and is totally > nonverbal. > > My son's illnesses pretty much echo the illnesses of the majority of the > kids on this list. The difference is, that when I questioned the illnesses, > I always heard, " Well he's autistic. " I've always known there was something > medically wrong--but people were blinded by the autism and never dug further. > > My son has had all the classics: severe/constant sinusitis, asthma, > pneumonia, vomiting (which was called rumination. I was told he did this > because he liked it.), ulcers, chronic diarrhea, anorexia (again because he > was autistic--at one point he was 5'8 " and 100 lbs.), cataracts in both eyes, > insomnia, reflux and espohagitis. Also, when he was 5, he had a herpes break > out on his face, neck, mouth and throat. To this day, he still has > abnormally high titres. At some point, he had EBV, but I have no clue. Many > of his IGg viral titres for many viruses are still very high. > > Currently, Jamey is receiving IVIG every two weeks (25 grams). I'm sure he's > had the headaches and some nausea. As soon as his levels start to hold, we > will go to every 3 weeks. > > I know we are just at the beginning of treatment, but hopefully, Jamey is on > the road to a healthier, less painful life. > > Sincerely, > > > ------------------------------------------------------------------------ > Porsche Boxter. You and a friend. Nine dream days from > Napa Valley to Beverly Hills. Provided by CarsDirect.com. > Click to enter. > http://click./1/4882/10/_/480115/_/960093510/ > ------------------------------------------------------------------------ > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2000 Report Share Posted June 4, 2000 Diane, We have the waist problem on all pants and shorts and at age 12 he only wants certain brands and styles whether they are close to fitting or not! We take them up at the waist with darts which is not fun but works. He usually wears his shirt out as is popular around here. He is gaining a little weight back now and I love it and may get to take out a dart or two. Hope Kody is well. My son only liked one brand at age 4 and their slims were not very slim. Oh well. Jan TheSchmidtBox@... wrote: > Welcome ! It is hard to get diagnosed properly even when your child > doesn't have other factors like your son's autism. In our expericence, my > son's previous doctors treated symptoms forever and then once asthma was > diagnosed blamed everything on that. Until his asthma was under control and > he was still getting sick. It is kind of like peeling an onion...so far in > our journey we are halfway through the onion, tears and all. We have half a > diagnosis and will see another doctor on Monday for the other half... I hope. > Otherwise we need to go to Mayo or Rainbow Babies. So far my son Kody has IgG > def. 2 & 3 (his numbers are pretty non-existant) and steriod dependant asthma. > He is also very small (skinny) and lately kinda tall. He weighs 35.5 pounds > and is 45 inches tall. He needs a size 5 for length but a 2 for the > waist...try shopping for this kid! He usually only wears one brand of > pants...sometimes I think people think he only owns one pair of jeans, but > really I just can't find others that fit! You will get a lot out of this > list, the information alone is so valuable but the support is priceless. > > Diane, mom to Kody age 4 > > ------------------------------------------------------------------------ > Never lose a file again. Protect yourself from accidental deletes, > overwrites, and viruses with @Backup. > Try @Backup it's easy, it's safe, and it's FREE! > Click here to receive 300 MyPoints just for trying @Backup. > http://click./1/4936/10/_/480115/_/960111828/ > ------------------------------------------------------------------------ > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2000 Report Share Posted June 4, 2000 In a message dated 6/4/2000 2:29:56 PM Eastern Daylight Time, mew@... writes: << He usually wears his shirt out as is popular around here. >> Diane, Jan and Lee, Thanks for the welcome! We have the same problem here--men's lengths--about a boys 10-12 waist. Shirts are always long and baggy. The doctor is hoping that the IVIG will have and anti-inflamatory effect in his digestive system, and that he will start to gain some weight. Thanks again, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2000 Report Share Posted June 6, 2000 I also know someone whose two boys are autisitc and both have immune problems from my understanding there might be a link between autism and immune def. I know she has been looking into the connection between the two. Just my two cents. mom to Tyler 4 doing well except allergies. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2000 Report Share Posted June 6, 2000 Hi Ursula, Being a newbie at all of this, I was totally lost on a few things! << The IgG titers in an IVIG patient will always be high because you're testing for something that not only your son may/may not have but also what ever donor to the IVIG pool has had. Many of the common blood tests for viruses are useless because they look for antibodies with IgG and give false-positive results. Some of these tests can be done using the PCR method or looking for the IgM part of the virus.>> I had my son's viral IgG and IgM levels tested pre-IVIG. For example, Jamey's EBV IgG levels were 1500 and the range was 0-100. IgM levels within range. The way I understand this is that at one time he had EBV (IgG), but he isn't currently infected with it (normal IgM). Several of his viral titres were like this. What I don't understand is why his IgG levels are so high. Why do they put some kids on anti-virals if the IgG levels are high if there isn't current illness with the virus? << Macey's hepatitis and EBV tests must be done looking for IgM. Her H.pylori test had no IgM part so they tested during an endoscopy with a biopsy. What are Jamey's trough levels? Do they pretreat him with any medication? that may help with the side effects.>> I pre-medicate him before I take him. He takes zyrtec, extra strength tylenol and his usual dose of cellebrex. You lost me with the trough levels? I haven't a clue what that is? <<I'm glad you've come to join our group and hope we're able to help out.>> Thanks for the welcome! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2000 Report Share Posted June 6, 2000 In a message dated 6/6/2000 9:45:31 PM Eastern Daylight Time, ETERNI7045@... writes: << from my understanding there might be a link between autism and immune def. I know she has been looking into the connection between the two. Just my two cents. >> Your two cents is right on the money! There is a lot of research showing that there is a huge connection between the two. If your friend has internet access and wants some websites, I could email them to you/her. Chances are that she might already have the information. I can't imagine have two kids...that would be hard. Does she think there was any connection with immunizations? Best, Quote Link to comment Share on other sites More sharing options...
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