18 replies to this topic

[kyss]

Hi out there...I am just having a rought time this evening. My kids are going to have blood test tomorrow and because everyone gives me a hard time about not telling my youngest 7yr old that she will have a shot or blood test I told her this evening that she may have a blood test at the doctor tomorrow... and being sensitve and moody and weepy she is so upset about it. I feel terrible about telling her, but I didn't want her to go into this thinking I tricked her. I hope that they put the numbing cream on her before they draw, and this is just the blood test, what am I going to do when the doctor wants to biopsy. My oldest 11yr old is okay, but she has been poked since she was born (alot of allergies: seasonal, peanuts, animals..and has asthma to boot) so she actually isn't too worried thank goodness. Just thought I would let this off my chest, because I am worried about my youngest one falling apart tomorrow..... and I am not exactly feeling great myself (getting over a migraine). I hate putting them through this, I feel I am the reason they have to deal with this.....it stinks!



Kelly

[GFdoc]

Hey Kelly - hang in there, it'll be no fun for a short time, but then it'll be over. It's the anticipation of the unknown that makes the kids so crazy before blood tests and shots...they know it's going to hurt, but can't imagine how much, or how long...then their imaginations let loose and it makes things worse. A nervous parent only feeds into the anxiety..try to be calm (at least outwardly) and reassuring that you'll be there to help.

As a pediatrician and a mother of 3 young kids, I often advise people to not tell their kids that shots are going to be given....I think telling only prolongs the agony (in the head, not the arm). If a child asks a direct question like "am I getting a shot?" I tell the parents to decide how to answer depending on how they think their kid will handle it... for an anxious kid, it's better to tell a white lie and say "honey, I don't know what your doctor will be doing, lets find out at the appt" --it's only partially a lie, because, truthfully, sometimes docs will delay shots and blood tests for a variety of reasons. For a kid who can handle it, it's fine to tell.

The best part of all of this, (which a young child won't understand) is that the agony of the testing will help your children's health in the future. I tell my preschool age patients that I'm giving them special medicine in the arm so they won't get sick (it sounds better than the word "shot"- less threatening)

I had to test all my 3 kids for celiac - I did the blood draws myself with my husband holding them...it was painful to do (for me and for them) but other than my stubborn 8 year old who cried afterwards(out of anger, not pain) for 45 minutes, it was fine. They all tested negative, but will need more tests in the near future because I want to do the genetic testing ..

Good luck, and I hope their tests come out OK, and that it's not too stressful!

[kyss]

Sara,

Thank you for your help....my youngest (7) has been diagnosed with Bipolar Disorder and is on an antiseizure medication my oldest (11) is on Zoloft for depression.....but if this test comes back positive it will answer alot of questions and actually could make it possible to take them off these meds...I work for a pediatrician's office and they are very supportive of my and my decisions for my kids, for which I count myself lucky.

It is my husband and my parents who say I should tell them the truth..however next time they need to deal with my youngest all night with the night terrors after being told. So from now on if I am the one dealing with them the white lie will come out......I didn't know there is a genetic test for celiac disease, is it new? If they come back negative do you suggest a genetic test?

Thanks again for your help....I will just have to be strong for my kids today and put on the it's okay face for them...

Kelly

[GFdoc]

Kelly - the genetics tests (for HLA DQB-02 and HLA DBB-03) will only tell you if you don't need to worry about developing celiac disease in the future. If you do have either of those genes, and you have a first degree relative with celiac disease (ie parent, sibling, kids) then you need to be monitored regularly for development of celiac disease (by watching for symptoms, antibody levels). I was told to check my kids every 2 years because I have celiac disease. If the gene tests are negative, then I won't have to think about it (or poke them in the arm every 2 years).
Our kids are similar ages! (mine are 5, 8 and 11)

[kyss]

Sarah,

I really love and enjoy my kids more than anything on earth....except when my youngest gets moody. As I said before she is on an antiseizure med for Bipolar and that does run in our family (husband's side is a train wreck with it) I still wonder if the mood swings are celiac disease as well as the Bipolar...I have tried 2 meds on her so far with no luck of either working. Now her psych doc wants to try both meds at the same time. It's hard enough getting her to take 1 med. I think my oldest depression is celiac disease, she also has alot of physical symptoms (skin problems, horrible BMs, and horrible periods, yes periods since 10yrs old-poor thing). She is actually pretty positive that she may feel better if she is gluten-free...we will see...Thanks so much for your response...
Kelly

[kyss]

Just an Update!

Okay..I took both kids to the GI doc and he is really good. I think I was worried about that too. I was afraid that he wouldn't listen like my GI didn't at first, it took me 15 minutes to get my GI doc to order the AB IGA, and when it came back at 200 he was beside himself. This pediatric GI doc listened to the symptoms my children had since birth and he said he agrees with my thoughts especially because of the family history, however he decided to just get a blood test for my oldest and check alot of things.....thyroid etc. He said her pain seems to be more of a reflux in the upper GI tract, less than in the intestinal area..okay so he just ordered the blood test. With my youngest he said she has so many of the same combination of symptoms and with more severity that he feels she is probably positive for celiac disease...he however could tell she was nervous and afraid so he suggested doing the blood draw and biopsy on the same day while she is under...I agreed, why make her upset twice...so we will biopsy her on April 19th...and then we will see.....So I actually feel more assured after meeting this GI doc...he was very good about listening and not telling me I was crazy...thank goodness he listened I feel much better now I just have to wait for my youngest biopsy on 4/19 and mine on 4/26...and I'm sure I will have my oldest blood test back soon as well......Just thought I would let you all know it went well....

Kelly

[DLayman]

Oh that is wonderful! I am glad that you guys figured out a way to get that blood draw on the youngest. Are you working through a children's hospital? When we took out little guy in for his biopsy the children's hospital was terrific. They showed him everything, got a doctors hat for Dad and a nurses hat for me.. showed him the mask and all.. he's two so I don't know how much he absorbed of all that but it sure helped me! So don't lose too much sleep, ok!

I just have to say I am jealous! I wish that my doc had done the blood draw while he was under.. now I am left with a negative biopsy, no blood test and a kid who still is having some troubles.. you are very fortunate!

Sara,... I want you to be my doc!!!

Denise

[zippyten]

Sara,
Just wanted to say I stumbled on this post about getting kids tested and dealing with their anxieties about shots ahead of time, and glad that I did. I'm having both my daughters tested shortly (they are 8 and 13) since I was diagnosed about 6 weeks ago, and in particular my oldest is prone to extreme anxiety about many things, but also shots and blood especially. At our recent well check-up I had the pediatrician write out what bloodwork needs to be done at the lab but I didn't mention it to either of my kids yet because why make them nervous? I'll probably just tell them right before we leave the house. It's that much less time I have to deal with their anxiety.

I really appreciate a pediatrician and a mother confirming what I've already found to be true, or at least with my own and many other kids -- too much prep is counter-productive and only leads to unnecessary worry time that we, as the mothers, then have to deal with. The same thing goes for the possibility that the blood tests will be positive with one or both of my girls and then we'll have to try the gluten-free diet on them as well...my own mother questions why I haven't "prepared" them for the possibility but I don't see to what end. For now I think it makes sense to keep any concerns or worries I might have to myself and deal with the facts if and when we have to. (But one thing I've been conscious of is really being positive about my new way of eating -- at least in front of them! -- so that if they have to go gluten-free also, they won't remember me complaining and being upset about it.)

I also appreciated the info about re-testing kids every 2 years. My sister-in-law also has celiac disease and their kids tested negative; she was under the impression that the kids definitely do not have celiac disease, so it was useful to know that it just means they do not have an active case at the moment & could still be positive in the future. Thanks very much.

Ellen

[GFdoc]

Hi Ellen- I totally agree with you...I know that it's a possibility that my kids will develop celiac disease - I haven't discussed it with them at length, a little bit with my 11 year old. They DO know that I've found good tasting foods, and that I feel better, health-wise. I always share my gluten-free foods (the treats especially) with them so they can see that it's OK to be gluten-free. In fact, they prefer some of my gluten-free stuff to the regular nonGF foods. I'm hoping that this will "prepare " them in a casual, non-verbal way, in case they someday need to be on this diet too. They also are quite aware of what gluten is and see how carefully I read food labels - this I have encouraged in my older two kids - because I thinks it's good to teach kids about how to read food labels and ingredients (for general nutrition and health not just for celiac disease).

[KAthyB]

Kelly, I just want to let you know that I have daughter who has just tested positive for celiac disease by genetic blood test, serum blood test and biopsy and her symptons were not intestinal but more reflux, irritability, leg pain and weight loss. After going on the gluten-free diet the moodiness and leg pain went away but the reflux got worse. The gluten-free foods were more acidy than her usual staples of chicken noodle soup and crackers etc. The doctor ordered a PH probe and it was flamingly positive. Now she takes Nexium and sticks to the diet and is a happy and almost healthy teenager.She has also stopped losing weight. Good luck with the testing! I have found children's hospitals are much more successful in getting kids to cooperate. My daughter actually volunteers at one in the summer and helps the child life department keep the kids calm.
Kathy

[kyss]

Kathy,
I really appreciate the feed back....and here my husband and I thought my oldest's behavior, attitude and depression was just us being poor parents. She has a multitude of diagnosis from the mental health people from Oppositinal Defiant Disorder to Obsessive Compulsive Disorder to Depression...she is on Zoloft and if that isn't bad enough she has horrible leg cramps and pain. She is very positive about this entire celiac disease thing....I think she feels so bad that she is willing to try anything....

I think the GI doc just thought my oldest's symptoms weren't as typical as my youngest, but I truely believe my oldest has the celiac disease and the HP. She comes by it honestly...I think her father has it too, and I know my mother has it. The reflux also goes hand in hand with Asthma....the reflux triggers the asthma, and sometimes the asthma triggers the reflux. The GI doc wants to put her on Prevacid...but he said to wait until the test comes back. The GI doc asked if my kids had ever had pneumonia....when I told him one time each of the last 2 years he was not surprised. In fact he said to watch them now because they could get ill with this horrible respiratory season we are having in Colorado. And then guess what, my oldest got so sick, some virus that triggered her asthma...she just finished a 3 day steriod burst because Albuterol Nebulizers weren't helping her peak flows, so she ended up on Prednisone....she hates that! My youngest has been a pill...we had pizza Friday night and the entire weekend was an emotional rollercoaster with her....she displays Bipolar symptoms, but I really think some of it is the celiac disease. My youngest gets her biopsy next week....and I can't wait to get the results of my oldest's blood test....hopefully tomorrow....

I really appreciate your response. I am so glad I found this site....it is the life preserver I needed to keep afloat with this disease....

I will keep you all posted....
Kelly

[KAthyB]

Kelly, I wanted to add that my daughter is also under neuro.'s care for migraines and is managed with topamax and nortriptyline, she also is under cardio care for fainting disorder and has at times been suspect of mental illness. Since there is no family history, I refused to believe that, and it was confirmed by a psychologist. She is 18, has always had straight A's, has won many community awards, has a sweet boyfriend and many other friends. Her friends call her their "role" model since she never seems to let all her physical problems interfere with her life. She will begin college in the fall and hopes to be a pediatric nurse. I am certain the moodiness and anxiety she exhibited were from the gluten. The leg cramps were making her crazy and I know a few of her doctors thought they were psychosomatic but they are almost gone on the diet. Be careful about what anti-depressants you let your daughter have. Mine was on a very low dose of zoloft for 2 years for autonomic disorder re BP and heart rate and it tough going off. My daughter also has mild asthma. There are a lot of similarities, so I hope this helps. If she gets a celiac disease dx you should really reconsider all her metal illness and hopefully once on the diet she could wean off those meds and perhaps just get some professional counseling while healing. I have my sweet little girl back thanks to the persitance of a Ped insisting we get to the bottome of the weight loss. My other children, boys 22 and 25, are in perfect health.
Kathy

[kyss]

Kathy,

I just read your reply and now I am stumped...there are alot of similarities and I just received her blood work results...they were negative for celiac disease. The GI doc assures me that we still need to keep an eye on her, he is putting her on prevacid 30mg a day and then in 2 weeks we will revisit the issue, if at that time she is still having problems with stomach aches, bm, leg cramps he said we can proceed with the biopsy to check things out. My youngest is all set for biopsy on 4/19/04...he also said based on my youngest's biopsy he may just do a biopsy on my oldest to rule it out. I had read and heard that children may test negative at first but develop the disease later. I think I may question the GI doc about the genetic tests for celiac disease as Sara mentioned before to check that out. I hope my oldest can find her way through this like your daughter did, it's great that she is doing so well. Thank you for reminding me I am not alone....it makes me feel much better!

Kelly

[wildones]

kyss
Who is your peds GI doctor ? Is it Dr Stathos ? You said you were in Colorado, and so are we. We know Dr Stathos VERY well, one of my boys has had most of his intestines removed, two have celiac disease and all three have reflux problems, so we see him a lot ! We think he is a great guy, my kids run up to hug him every time they see him Did you have the blood work done Through Prometheus labs ? Both of my boys and I have had very different manifestations of our problems with gluten. If you are seeing Dr Stathos and doing a biopsy, then I would suggest bringing the testing 'kit' from Prometheus with you, and not having the blood drawn sent to the hospital lab.
Have you joined the local celiac support group ? I have only been to one meeting so far, but plan on attending more.
My son with the short gut had several false negative blood tests for celiac (the older, less acurate tests) .
Hope you get some answers soon, my kids and I feel SO MUCH better being gluten free, not 100% yet, but much improved. We have had all of the symptoms, and more, that you described between all of us.
If you are not seeing Dr Stathos, I know all of the other pediatric GI drs in town too , if you would like any helpful hints.

[kyss]

The GI doc we are seeing is Dr. Jeff Rosensweig at PSL in Denver. My oldest daughters test was done at Quest Diagnostics....what is Prometheus Lab? I have never heard of this...I plan on talking with the GI doc again and asking him about Genetic testing for celiac disease on my oldest. I still feel like she may have celiac disease, but the test is negative so where do I go from there?

I haven't joined any support groups yet, I am still so new to this and if I'm not exhausted with celiac disease then I am exhausted with all the running around (Psychiatrists, counselors, GI docs, Regular docs, Pharmacy for tons of meds). I want to join a support group, do you know where there is one near Denver, Colorado? My husband says I am going to lose my mind just trying to get diagnosed....the past 2 months have been a whirlwind of doctor visits and I am just spent......Sorry, didn't mean to vent...

Thanks,
Kelly