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Post by PaigesMom on Jun 25, 2004 19:01:05 GMT -5
Paige had her 4 year well visit a week ago. Even though it is in the DS health guidelines to do a Celiac panel (IgA) at age 3, due to other issues, we waited until she was 4. (GI issues, neutropenia, sleep apnea and getting a T&A, ear tubes, etc.)
Guess what? We got the results today, and it's positive on both blood tests - the counts were over 100. According to the dr. anything over 30 is considered positive. She said if all of the bloodwork (both tests) was positive, the chances of her "really" having it are pretty good as opposed to having one test come back positive and one negative. She said we'd have to have a biopsy soon and after the biopsy she'd have to go on a gluten free diet.
Has anyone else had both blood panels come back positive and have a negative biopsy?
Does anyone's child have Celiac's? If so, is it really a total nightmare for a gluten free diet?
Anyone have any info they can share?
Thanks, Debbie
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Post by PaigesMom on Jun 27, 2004 8:19:23 GMT -5
I dont know about how "common" it is, but I know that there are 2 children - out of 10 that I know well - that have Type 1 Diabetes, and they also have Celiacs. It has been theorized that more than likely the Celiac's came first - it's an autoimmune disorder - caused damage to the pancreas, thus causing diabetes - also an auto immune disorder. Dont know if there is any truth to this, but it was told to both sets of parents by two different dr.'s - one from CHOP in Phila, one from AI Dupont in DE. Additionally, they told them there is extensive research going on now about autoimmune disorders on the 21st chromosome, apparently that's where they are "housed" as well About the leukemia that Bob mentioned- Paige is neutropenic and we get her checked at hematology every 6 months. 20-30% higher of a risk sounds pretty accurate to me according to the dr. we see - if that works out to be 1 in 95 that is pretty scary to me, considering the fact my risk of having a DS child at age 30 was 1 in 800!!! Debbie
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Post by PaigesMom on Jun 11, 2004 11:06:24 GMT -5
Sorry CC - I must have been thinking about another post of mine that you answered . I'm glad Chris isn't on meds for ADHD!! ;D Debbie
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Post by PaigesMom on Jun 9, 2004 18:56:53 GMT -5
CC - Not sure if you've heard back from your dr.'s as of yet, but I thought that I would share this.
Paige just started Adderall 10XR and before that she was on Focalin. My developmental pediatrician told me that when kids who take stimulant meds are prescribed antibiotics, they interfere with the absorption of the stimulant meds and can cause ADHD Inattentive, Impulsive or other behavioral symptoms to reappear or new ones to appear ONLY during the course of the antibiotic.
I dont know if this is true or not, but I will say that Paige was on Augmentin 600 ES for a sinus infection a couple of weeks ago, and I actually questioned whether or not she got her other meds in the morning, and so did the teacher. She became so bizarre behaving - even different that what she was put on the meds for........when we were done with the Augmenten, she "came back to us", lol.
I am bringing this up only as a possibility as I think I remember your replying to my post on meds b/c Chris was on them as well.
Debbie
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Post by PaigesMom on Jun 5, 2004 16:55:44 GMT -5
Hi Dolly,
Paige received the pnuemococcal vaccine at age 3 by recommendation of our pediatrician. She also received all 4 Prevnars from 2 months thru 18 months. I was worried because I thought that it would be giving her an extra dose of protection that she had already had 4 previous times, but our pediatrician said that Pneumovax only protects against like 12 strains of disease and the pneumococcal protects more than double that.
We went ahead and got it and she had no major side effects - I'm thinking just a little redness around the injection site and a low grade fever for like 24 hrs. It was no big deal.
Now she just turned 4 and I'm panicked again about her second dose of MMR. I know the research shows that MMR has no link w/Autism, but I have heard the symptoms dont show up until after the second dose at age 4. Uggh!
Good luck
Debbie
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Post by PaigesMom on Jun 5, 2004 17:03:47 GMT -5
CC -
A good friend of mine had laser sinus surgery to remove nasal polups (sp), and just left over gunk from years and years of sinus infections. The surgery was painful, but successful for a short period of time - maybe a year, and then she had to have it done again. That was about 5 years ago and she's been fine ever since. A major decrease in sinus infections since then.
My brother in law also had this done about 10 years ago and it was successful for him as well up until recently when he has started with constant/recurrent sinus infections. It was painful - bad headaches, sinus pain and pressure from swelling - for about a week. He swears it was the best thing he ever had done and is contemplating doing it again.
The success is probably per individual and totally related to the type of sinus issues they are having.
Good luck!
Debbie
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Post by PaigesMom on May 26, 2004 12:02:56 GMT -5
Paige also has "chronic benign neutropenia". Her ANC count has been down to mid 500's and she never goes above 1400-1500 - according to my ped. 1500 is rock bottom minimum on a constant basis to take away the neutropenia diagnosis. They say 3500 is "normal". Her WBC's are fat and round (which is indicitave of Trisomy 21), there are not alot of them, but they are healthy - she is always plagued with colds/sinus infections/strep, virus's, etc. They say as she gets older it may get better, but not necessarily.
Debbie
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Post by PaigesMom on May 10, 2004 19:10:07 GMT -5
Prayers are coming from our family as well. You must be very frightened. Let us know as soon as you have any new news.
Hugs Paiges Family
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Fevers?
Apr 19, 2004 16:51:43 GMT -5
Post by PaigesMom on Apr 19, 2004 16:51:43 GMT -5
Paige generally never runs a fever either, whereas my son runs them alot. I actually only remember one in 4 years when she had pneumonia, and the fever came on very suddenly, and she was so lethargic she didn't move. I took her to the ER, and I felt terrible because until the fever hit, she was acting totally fine.
It does bother me in a way only because like others have said, sometimes the dr.s underestimate what is wrong, and it's the same every time, if she has a cold/sinus infection, etc., they make you wait 7-10 days before bringing them in, if there is no fever, and usually she has either strep/sinus or ear issues going on.
I just take her in anyway, I know they get tired of seeing me ;D
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Post by PaigesMom on Apr 5, 2004 8:29:39 GMT -5
Jordans Mom:
I have no "first hand experience" with the hallucinations/mood disorder/ocd, however, I believe I can get some information for you. My uncle, who is now in his late 50's also has DS, and as far as I can remember, even as a little girl, he had the same issues, and I know he was/still is treated with medication. His is also complicated by violent behavior. My grandmother is deceased, but my Aunt is his caregiver, and we talk pretty regularily.
If you wouldn't mind posting a little more info, it would help me with questions to ask her - Could you give an example of the hallucinations either night time or daytime? What types of things does she do that lead the dr.'s to believe she is OCD? Mood disorder - do her moods change frequently? Also, does she go to school/outside activities/have friends, etc. Basically any more info. that you feel you can share that I can use to talk w/my Aunt.
As for the enlarged breast - I'm sending prayers they figure it out for her and you SOON!!!
Debbie
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Post by PaigesMom on Oct 2, 2005 13:57:17 GMT -5
Paige has bloodwork every six months as they monitor her ANC count = absolute neutrophil count - which is the component of your WBC that fight infection - or one of the components anyway. She's been to the hematologist and had them look at her cells. She has much fewer, but they are healthy, they just have to be monitored. "Normal" ANC count is between 1500-7000 (whatevers), she hangs around 1300, with her lowest being 600 when she was an infant.
Debbie
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Post by PaigesMom on Aug 25, 2005 18:52:42 GMT -5
Actually, Paige had the same problem with ear tubes. She's on her 3rd set. The first ones were in over 2 years - the next ones didn't even make it a year. The alleged reason for this was that each subsequent time the tubes fell out the hole never completely closed. They can insert the same sized tube in the existing hole, but it will fall out much faster. The only way you can avoid the problem is by increasing the diameter size of the tube - which we did last time, and I was not happy about, but she needed them. That may be the reason Meghans are falling out so soon.
As for T&A - we had it too, when Paige was 3 1/2, she did not have apnea, but she thrashed all night long b/c she could not breathe. I'd find her in all sorts of crazy positions, she was chronically congested and had tons of gunk in her throat constantly. Since we had them out, she has had ONE, I repeat ONE sinus infection - YAY!!
The recovery for her was hard, but I would recommend it.
Debbie
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Post by PaigesMom on Aug 25, 2005 18:58:31 GMT -5
Thanks Bob!!! That makes alot of sense. They always do the T4 as well and this time they did a T3, which she has not had before. I called them back and the nurse told me that some additional tests came back (maybe the T4 and T3) and that the dr. would be calling me to discuss.....so I'll update this chapter as soon as I know........
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Post by PaigesMom on Aug 24, 2005 5:42:03 GMT -5
Hey everyone,
I've been MIA for awhile - back to work full time, having NO TIME, lol.
Anyway, I took Paige for her well visit and annual thyroid check a week ago. The dr. told me that her thyroid level was "mildly above normal" something like a 5.95 and 5 was the max.
This is the same as last year, pretty much, when they told me that it was not high enough to be considered hypothyroidism. They are continuing to say the same thing.
Has anyone's child been diagnosed w/hypothyroid with low levels? How do you know just exactly what levels mean you have it, and what levels need medication. It makes me nervous that this has happened 2 years in a row and that maybe they are being to lax about it - or maybe I am just being to paranoid.
Any suggestions/comments welcome.
Take care everyone.
Debbie
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Post by PaigesMom on Apr 14, 2005 19:54:07 GMT -5
OMG, Monique, we have to talk. I just posted a thread on this, you should read it, except I dont know how to post the link.
HELP ME, someone who is computer literate, lol.
Really, my daughter is over the top with constipation. She does not have bowel movements on her own, always with the aid of enemas every 10 days. She's been impacted and tubed with GoLitely in the hospital several times. She has been on Mirilax (is on it now, 2 whole capfuls a day), Senekot, Lactulose, Fletchers, Milk of Magnesia, Mineral Oil enemas and regular Fleets.
We should compare notes. Really, PM me.
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