Guest guest Posted September 6, 2004 Report Share Posted September 6, 2004 In a message dated 9/6/2004 11:55:07 PM Eastern Daylight Time, ercokat@... writes: Are other IgA Deficient kids (or Pid kids in general) small? is 4, and she is so small. Other kids her age are taller and so much bigger. Brittany is tall enough but she is VERY thin. She also has the dark circles, like we talked about. She is 13 weighs 85lbs. The other kids her age are all over 100lbs. Her feet are big she wears a 8 1/2 shoe. I hope with the IVIG treatments she will put on weight. We go for number 5 this Thursday. Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2004 Report Share Posted September 6, 2004 : is a very picky eater, too. She's somewhat tall (can't explain that because I'm 5'4 " and DH is 5'7 " ) and just a little slim but not too much. Because she's so picky, I've had to be creative. I am always throwing things in to try to round out her diet. I make homemade muffins (it's easier than it sounds) and sneak in things that she normally wouldn't touch with a ten foot pole (like zuchini), but you can't get too much in or it's obvious. A favorite breakfast is slices of apple she can dip in peanut butter, with a Silk soy smoothie to drink. She likes chicken noodle soup so now I make it with a lot of vegetables in the stock (but not in the soup, Heaven forbid!), hoping some vitamins get through. I give her a couple choices at lunch and dinner but if she doesn't like what we are eating for dinner (most likely!), I tell her she has to try a bite of everything and after that her only option is fruit. She won't eat any vegetable (not even corn or potatoes!), so fruit is the only completely healthy thing she eats. I make sure she has a protein (cheese, eggs or chicken, she doesn't like beef or pork) at every meal. We used to have a bad habit of giving her a whole cup of soy milk with dinner (my kids can't tolerate cow's milk to drink), and she'd wolf the whole thing first and have no appetite for food. She has always grown well though! Now I give her water with dinner and she eats better, but still is so picky. We used to let her just pick at her dinner and then have a snack later, but my SIL never let her kids eat after dinner, in order to make them eat better at dinner time (worked for her). So now after dinner the " kitchen is closed " but fruit is always allowed, any time during waking hours. I try my best on the real food and hope vitamins fill in some of the blanks. My kids love Flintstones Complete vitamins, they think it tastes like candy! Most of all though, I try not to make an issue of it. I do my best and try to get as many wholesome things in as I can, but then I try to let it go. I hope some day my example may rub off, because I like pretty much every food on the planet including 99% of the vegetables. So I try to set a good example, though since the only vegetables DH eats are corn, potatoes, celery, carrots and onion, he's not exactly helping me! (mom to , age 5-1/2, dairy intolerant-related GERD -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs... and also to Kate, born 9/19/02, dairy intolerant) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Nick is tall and thin for his age. He is 20 months and 24 lbs but 34 inches tall. He is also still on formula to help gain weight. I am 5'4 and my husband is 5'9. My other children are very tall and skinny too. Kayla is almost 9 and barely 50 lbs soaking wet, she is 52 inches and Noah is 5 and 39 lbs and 41 or 42 inches tall. So it may be genetics here. My husband is about 140lbs so they all might just be taking after him.. unfortunately, I am not as thin as they all are hehehehe.. Amy, mom to: , 20 months old. CVID, MSPI, GERD, Asthma.. on Neocate, prevacid, claritin, flovent, xopenex, and IVIG sub Q every two weeks (Carimune NF) Re: IgA Kids Smaller? In a message dated 9/6/2004 11:55:07 PM Eastern Daylight Time, ercokat@...<mailto:ercokat@...> writes: Are other IgA Deficient kids (or Pid kids in general) small? is 4, and she is so small. Other kids her age are taller and so much bigger. Brittany is tall enough but she is VERY thin. She also has the dark circles, like we talked about. She is 13 weighs 85lbs. The other kids her age are all over 100lbs. Her feet are big she wears a 8 1/2 shoe. I hope with the IVIG treatments she will put on weight. We go for number 5 this Thursday. Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 My Rebekah is tall for her age! Go figure! By the time she was diagnosed, she had stopped growing, but she was a 90th percentile 1yo. At age 2, she was in the 10th percentile. Now, she is back in the 90th percentile. She grew inches once we started treatment. She is low in IgA and IgG and has a complement disorder. Pam wife to (17 years) mother to , 10, Hannah, 8, Rebekah, 5, and Leah, 2 Rebekah has CVID and maybe some other stuff IgA Kids Smaller? Hi All - Just added my 's photo to the bunch! They are all so cute!!! Are other IgA Deficient kids (or Pid kids in general) small? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 I have 2 kids on opposite ends of spectrum. My older son is 3 years old and just resolved Failure to Thrive. he was 19# at 1, 22# at 2 and 28 # at 3, now 30# at 40 months, and 36 " tall. He had severe food allergies most of which have resolved and GI issues which are also resolved. He is doing better now, but still small, and has low IgA amd IgG but not " severe enough " to treat and rarely gets sick. My baby is 12 months, 24#, 30 " , low IgA and IgM, does get sick often enough for me to worry, has severe allergies and GI Issues but is a BIG boy. So, I think MOST of these immune compromised kiddies are on the smaller side but my baby is an exception (from all that I have heard). Mom to: Hunter, 8/23/03, allergic to milk, soy, egg, wheat, corn, rice, oat, lamb, turkey, ham, veal, beef, banana, pear, squash (and maybe more?!); EG, EC, colon nodules, eczema, reflux, IgA and IgM deficient; on Elecare only (and Prevacid 30mg, 4mg Singulair & 1 tsp. Zyrtec daily) *and* Tyler, 5/6/01, allergic to milk and fish; outgrew soy and egg; Low IgA and IgG; EAs to trees, grass, mold, dogs; asthma " My sons are my greatest accomplishment and the opportunity to raise them is my greatest challenge " " Mothers of sons work from son up to son down! " IgA Kids Smaller? > > > Hi All - > > Just added my 's photo to the bunch! They are all so cute!!! > > Are other IgA Deficient kids (or Pid kids in general) small? > > > > > 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. > > To unsubscribe -unsubscribegroups (DOT) > To search group archives go to: /messages > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Hi , Just saw your post, is 9 and is 52 lbs and 50 inches, she is and has been one of the smallest kids in her grade throughout school. I have watched all her friends outgrow her. To think of it she is smaller than her cousins as well, even the ones who are a year or two younger. Most of them are 1/2 to a full head taller and all outweigh her. She doesn't like food, well that is if it isn't pbj or chicken nuggets. But she has a lot of stomach pain and reflux. She is on a supplement to augment her calories. I think these kids bodies are fighting so much infection they don't take in enough calories to grow as well. Well that is my 2 cents. mom to - CVID, GERD, asthma IgA Kids Smaller? Hi All - Just added my 's photo to the bunch! They are all so cute!!! Are other IgA Deficient kids (or Pid kids in general) small? is 4, and she is so small. Other kids her age are taller and so much bigger. I haven't measured her height recently, but she only weighs 32 pounds. Other kids her age are a good 8 lbs or more than that, and seem to tower over her. In April they said she was in the 35th percentile .. I think it was the same for height and weight ... but all of her friends are so much bigger. She doesn't eat well ... just really isn't very interested in food (except junk food). My husband is tall (6' 3 " , and I am 5' 6 " ), so we're not sure why she is so little. My 6 yr old son (isn't IgA Deficient) is a little short for his age (no pun intended there!), but he isn't skinny. also has those terrible dark circles all the time. I think we discussed that within the last couple of months. How do I get her to eat better? Think I could get her bigger, or is she small because of the immune issues and having infections all the time? , Mom to , 4, asthma, IgA Deficient, chronic ear/sinus infections Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Pam, A quick ?, I saw you said your daughter had a port? We are considering one for , if her last IVIG is any peek into the future, it will come sooner than later. The nurses blew her first IV last week, so it took 1/2 hour to calm her down enough to even let them look for another site, than 4 people to hold her down for the second stick. This is with Valium on board. She gets so distraught, she cried with me cuddling her for an hour afterwards. We both shed some tears. I don't think I can go through many more times like that, let alone her. Any help would be appreciated. I don't really know much about ports etc.Thanks mom to - CVID, GERD, asthma IgA Kids Smaller? Hi All - Just added my 's photo to the bunch! They are all so cute!!! Are other IgA Deficient kids (or Pid kids in general) small? 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. To unsubscribe -unsubscribe@groups<mailto:-unsubscribe@groups>. To search group archives go to: /messages<PedP\ ID/messages> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 It funny you asked this question, because I have wondered it myself all along. is 8 (CVID) he is only about 48 pounds and about 46 inches tall. My 5 year old is the same size and weighs more. He is only in the 5th percentile. To complicate things, he has ADHD and is on Ritalin (which can cut his appetite and long term use can affect your overall adult height by about 1 inch. ) Well, his Dr. says, " What's one inch? " Well, that one inch might matter for him as a male adult. Anyway, I think there is a connection. My two other (healthy) children are big for their age and is tiny. My Drs. won't say it's related, but I think so. Kim - Mom to 8 (CVID, ADHD); Nick, 10 and 5 IgA Kids Smaller? > Hi All - > > Just added my 's photo to the bunch! They are all so cute!!! > > Are other IgA Deficient kids (or Pid kids in general) small? > is 4, and she is so small. Other kids her age are taller and so > much bigger. I haven't measured her height recently, but she only > weighs 32 pounds. Other kids her age are a good 8 lbs or more > than that, and seem to tower over her. In April they said she was > in the 35th percentile ... I think it was the same for height and > weight ... but all of her friends are so much bigger. She doesn't > eat well ... just really isn't very interested in food (except > junk food). My husband is tall (6' 3 " , and I am 5' 6 " ), so we're > not sure why she is so little. > > My 6 yr old son (isn't IgA Deficient) is a little short for his > age (no pun intended there!), but he isn't skinny. > > also has those terrible dark circles all the time. I think > we discussed that within the last couple of months. > > How do I get her to eat better? Think I could get her bigger, or > is she small because of the immune issues and having infections > all the time? > > , Mom to , 4, asthma, IgA Deficient, chronic ear/sinus > infections > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Hi I am so glad you asked this question. I have wondered it myself for quite a while. is 8 with CVID. He is about 48 pounds and about 46 inches tall and in the 5th percentile. My 5 yr. old daughter is the same height and weighs more. To complicate matters, he is on Ritalin for ADHD which can affect your appetite and long term, can shorten your overall height by about 1 inch. (Which matters more for boys, I think.) Anyway, my Drs. say there is probably no connection, but I think there must be. I have three kids and the other two are big for their age and is the total opposite. People that don't know us, think is younger than my 5 yr. old (and think my 5 year old is older...) Kim - Mom to 8 (CVID, ADHD); Nick, 10 and , 5 IgA Kids Smaller? > Hi All - > > Just added my 's photo to the bunch! They are all so cute!!! > > Are other IgA Deficient kids (or Pid kids in general) small? > is 4, and she is so small. Other kids her age are taller and so > much bigger. I haven't measured her height recently, but she only > weighs 32 pounds. Other kids her age are a good 8 lbs or more > than that, and seem to tower over her. In April they said she was > in the 35th percentile ... I think it was the same for height and > weight ... but all of her friends are so much bigger. She doesn't > eat well ... just really isn't very interested in food (except > junk food). My husband is tall (6' 3 " , and I am 5' 6 " ), so we're > not sure why she is so little. > > My 6 yr old son (isn't IgA Deficient) is a little short for his > age (no pun intended there!), but he isn't skinny. > > also has those terrible dark circles all the time. I think > we discussed that within the last couple of months. > > How do I get her to eat better? Think I could get her bigger, or > is she small because of the immune issues and having infections > all the time? > > , Mom to , 4, asthma, IgA Deficient, chronic ear/sinus > infections > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Hi I am so glad you asked this question. I have wondered it myself for quite a while. is 8 with CVID. He is about 48 pounds and about 46 inches tall and in the 5th percentile. My 5 yr. old daughter is the same height and weighs more. To complicate matters, he is on Ritalin for ADHD which can affect your appetite and long term, can shorten your overall height by about 1 inch. (Which matters more for boys, I think.) Anyway, my Drs. say there is probably no connection, but I think there must be. I have three kids and the other two are big for their age and is the total opposite. People that don't know us, think is younger than my 5 yr. old (and think my 5 year old is older...) Kim - Mom to 8 (CVID, ADHD); Nick, 10 and , 5 IgA Kids Smaller? > Hi All - > > Just added my 's photo to the bunch! They are all so cute!!! > > Are other IgA Deficient kids (or Pid kids in general) small? > is 4, and she is so small. Other kids her age are taller and so > much bigger. I haven't measured her height recently, but she only > weighs 32 pounds. Other kids her age are a good 8 lbs or more > than that, and seem to tower over her. In April they said she was > in the 35th percentile ... I think it was the same for height and > weight ... but all of her friends are so much bigger. She doesn't > eat well ... just really isn't very interested in food (except > junk food). My husband is tall (6' 3 " , and I am 5' 6 " ), so we're > not sure why she is so little. > > My 6 yr old son (isn't IgA Deficient) is a little short for his > age (no pun intended there!), but he isn't skinny. > > also has those terrible dark circles all the time. I think > we discussed that within the last couple of months. > > How do I get her to eat better? Think I could get her bigger, or > is she small because of the immune issues and having infections > all the time? > > , Mom to , 4, asthma, IgA Deficient, chronic ear/sinus > infections > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Sorry for the double post. I thought I lost the first one and tried to remember what I wrote the first time. Now they are both there... .Sorry! A day in the life of a stressed out mom. Kim IgA Kids Smaller? > > > Hi All - > > > > Just added my 's photo to the bunch! They are all so cute!!! > > > > Are other IgA Deficient kids (or Pid kids in general) small? > > > is 4, and she is so small. Other kids her age are taller and so > > much bigger. I haven't measured her height recently, but she > only > > weighs 32 pounds. Other kids her age are a good 8 lbs or more > > than that, and seem to tower over her. In April they said she > was > > in the 35th percentile ... I think it was the same for height > and > > weight ... but all of her friends are so much bigger. She > doesn't > > eat well ... just really isn't very interested in food (except > > junk food). My husband is tall (6' 3 " , and I am 5' 6 " ), so > we're > > not sure why she is so little. > > > > My 6 yr old son (isn't IgA Deficient) is a little short for his > > age (no pun intended there!), but he isn't skinny. > > > > also has those terrible dark circles all the time. I think > > we discussed that within the last couple of months. > > > > How do I get her to eat better? Think I could get her bigger, > or > > is she small because of the immune issues and having infections > > all the time? > > > > , Mom to , 4, asthma, IgA Deficient, chronic ear/sinus > > infections > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Sorry for the double post. I thought I lost the first one and tried to remember what I wrote the first time. Now they are both there... .Sorry! A day in the life of a stressed out mom. Kim IgA Kids Smaller? > > > Hi All - > > > > Just added my 's photo to the bunch! They are all so cute!!! > > > > Are other IgA Deficient kids (or Pid kids in general) small? > > > is 4, and she is so small. Other kids her age are taller and so > > much bigger. I haven't measured her height recently, but she > only > > weighs 32 pounds. Other kids her age are a good 8 lbs or more > > than that, and seem to tower over her. In April they said she > was > > in the 35th percentile ... I think it was the same for height > and > > weight ... but all of her friends are so much bigger. She > doesn't > > eat well ... just really isn't very interested in food (except > > junk food). My husband is tall (6' 3 " , and I am 5' 6 " ), so > we're > > not sure why she is so little. > > > > My 6 yr old son (isn't IgA Deficient) is a little short for his > > age (no pun intended there!), but he isn't skinny. > > > > also has those terrible dark circles all the time. I think > > we discussed that within the last couple of months. > > > > How do I get her to eat better? Think I could get her bigger, > or > > is she small because of the immune issues and having infections > > all the time? > > > > , Mom to , 4, asthma, IgA Deficient, chronic ear/sinus > > infections > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 In a message dated 9/8/2004 1:11:41 PM Eastern Daylight Time, rn4premies@... writes: She is on a supplement to augment her calories. may I ask what she is on? Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 Hi Janet, She is on Nu-Basics, a complete nutrition juice drink from Nestle Nutritionals. She cannot have any milk based supplements, won't even try them if they have a milk like consistency. This is like a juice, small cans, 5.5 ounces, 165 cal/can. smells vitaminy , but she likes it. There are 2 flavors, Sweet Berry( she likes this one) and an orange one ( she doesn't like). We get it from our pharmacy, you can look it up at www.NestleClinicalNutrition.com<http://www.nestleclinicalnutrition.com/> or call 1-800-422-2752. I hope this helps. mom to - CVID, asthma, GERD Re: IgA Kids Smaller? In a message dated 9/8/2004 1:11:41 PM Eastern Daylight Time, rn4premies@...<mailto:rn4premies@...> writes: She is on a supplement to augment her calories. may I ask what she is on? Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 We got a port for Rebekah because she wasn't quite 3 yet and she has tough veins. Now, it's possible that we weren't hydrating her enough, but they were poking her hands 7 times to get a line in. They'd get a line in and the vein would blow. At one point, they were looking at her feet and her scalp! Since Rebekah is missing so much of her immune system, we were told that she would always require IVIG. Rebekah also fussed about having her hand tied to a board for 8-9 hours for the treatment. The port allows us basically a one-shot access to veins. No more sticking and resticking the child. However, it took many treatments before the panic level dropped! I don't think you can convince a 3yo that sticks don't hurt...no matter how much emla you use! LOL If we were making our decisions today, I think that I would push for subQ rather than a port. Ports are a site for infection to set in and I do not feel comfortable accessing the port myself (despite the fact that our immuno thinks I should be doing it!). Our port has been a wonderful God-send! I am deeply grateful that my little girl can run around and play and color and eat comfortably during treatments. Last year, she even jumped in the leaves with her lines in (yes, mom grew a new gray hair over that stunt!). I don't know if I answered your questions. If not, ask again. Pam wife to (17 years) mother to , 10, Hannah, 8, Rebekah, 5, and Leah, 3 Re: IgA Kids Smaller? Pam, A quick ?, I saw you said your daughter had a port? We are considering one for , if her last IVIG is any peek into the future, it will come sooner than later. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 Thanks Pam, You answered most of them. Our ped won't consider subq because has basically no body fat on her. My thought also is that if it's more than one needle, subq or not she won't put up with it. She has just been approved to get IVIG every 3 weeks instead of every 4. My husband spoke with one of his colleagues today, he is a surgeon, and he agrees that a port is the right way to go. So we will see how her next infusion goes and take it from there. I do worry about the infection, but a port is better than a line in that sense. Thanks so much. , mom to - CVID, asthma, GERD Re: IgA Kids Smaller? Pam, A quick ?, I saw you said your daughter had a port? We are considering one for , if her last IVIG is any peek into the future, it will come sooner than later. 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. To unsubscribe -unsubscribe@groups<mailto:-unsubscribe@groups>. To search group archives go to: /messages<PedP\ ID/messages> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 Our ped won't consider subq because has basically no body fat on her. That is one word of advice we missed when we were looking at Sub Q for . had a very difficult time with Suq Q because he has little to no body fat.....he is also very muscular. You need to keep that in mind if or when you look into Sub Q. le 14, IVIG 7 years Quote Link to comment Share on other sites More sharing options...
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