:confused: Hi Im wondering if I can ask you all some questions. My daughter has been getting sick for some time now. She is turning 16 this Saturday. She went to an appointment with a new doctor yesterday because I had decided to switch due to her pediatrician not helping and finding out what is wrong with her. Anyway, here hare some of her symptoms, fatigue (all the time cant stay awake), losing weight, abdominal and throat/neck pain, dizziness and fainting (she was dx with neurocardiogenic syncope a couple years ago, and many others I cant really think of right now. Her pedi did do some labs on her which did show her thyroid auto antbodies very high. So she went to see her endocrinologist who didnt feel her symptoms were from that so basically it was left at that. So I decided to find a new doc for her.
Now to her appointment yesterday. The new doc was very nice and listened to my daughter and I. She asked all kinds of questions and one was if my daughter was tested for Addisons disease. As far as I know she was not. So she is ordering all kinds of bloodwork, the tests are metabolic panel,cbc,pt,ptt,ana,rheumatoid factor,cortisol,acth, and ace. She is also sending her for a cardiac echo because she found she has an arrythmia.
My daughter has had mono x2 and the second bout really did her in. She has missed lots of school and her old doc wouldnt put her on homebound even temporarily until we found out what was going on. The new doc said she will write the letter we need because she feels she can not function properly due to whatever it is she has. And it isnt fair to my daughter to have to fail and stay back because she is sick. The homebound would give her help by whenever she is too sick for school they will have a teacher come in to my house or give her online courses so she wont fail. She has missed at least 30 days this year and does have 2 A's, 2 B's and 3 F's. She tries so hard to keep up her grades but when she does go to school she comes hom and not even 15 minutes later she is asleep until I wake her for dinner, then after she is back to bed again.
Im sorry this is so long. Does anybody have any input? Thanks so much!

Hi Mome,

I'm glad you've now found a doc who seems to take your DD's symptoms seriously. When all of the labs come in, you may be a little closer to understanding what the main problem is, and what can be done about it.

One of the most impt tests for ruling out Addison's Disease & other forms of adrenal insufficiency is an ACTH stimulation test. It goes by other names: Synacthen, Cortrosyn stim or challenge. It's a fairly long test described in many past threads, and more involved than simply taking a random serum ACTH level.

Any serious infection can do a number on many of the body's organ systems, including those on the HPA axis. The CDC has established criteria for diagnosis of "post-viral chronic fatigue." My own DD had a very serious bout of mono at age 17, was bedridden for 10 weeks. In her case, recovery was complicated by celiac disease & other food intolerances that were not known to exist before the mono from heck. Not to say that is your DD's problem. For my DD, it took a good 18 mos. to get close to her normal energy back. She went to college with a disability waiver based on the PVCF. It's been 3 yrs. since she took ill, and she still has to be quite careful on a number of fronts, or she's back to ... not square one, but perhaps square 6 on a 1 - 10 scale. I did not know enough at the time to get the ACTH stim testing done, however my DD did have lower than normal random cortisol levels for a while, but seems to have recovered nicely.

Best wishes.

Thanks for replying. This has all been very overwhelming to us. My normally "healthy" child has been the sick one. My youngest who is 9 has many dx including IgG subclass deficiency and Ehler-danlos syndrome. He has been the healthy one now and it is hard for my daughter to be sick. Being a teen and normally loving to socialize has been so tired and sick that her friends come here most of the time to visit her.
She sent me a text today from school saying "I feel funny". Well I asked what she meant by funny and she said real dizzy feeling, lightheaded she said the worst she felt yet. I had her go down to the school clinic and lie down for a while. Then she went to lunch and ate she said that helped her feel a bit better. I would have picked her up but I didnt have a car. My husband had it and was 2 hours away for work.
I hope we find out soon.

Ok so I just came across my daughters labs from a month ago when her pediatrician oredered it. I just noticed her urinalysis has a trace of ketones. Her Albumin was high in her blood along with her Thyroid autoantibodies.

Ideas anyone?

We are going back to her new doc on Monday for her blood test results. Her TB test was negative.

Please, Please Help!
Thanks

Mom22, if after the doc. runs all the tests including ACTH and these do not pan out you should ask your doc. to test her for Lyme Disease western blot IGG & IGM by Igenex Lab in Palo Alto, CA, no other lab! My son and I had been trying for years to find out what was wrong with us, my cortisol levels are low, but I was having alot of other symptoms that didn't coincide with Add. dis. And so was my son. Many people who first contract LD are misdagnosed with mono at first, and then they never feel the same after, plagued with dizziness, fatigue, nausea, confusion, mental fog. My straight A, star athlete of a son is now homebound and rarely gets out of bed, he was finally diag. last Oct. and is starting to feel better with antibiotic therapy, but has to take the 8th grade over. It started with a bad "virus" lasting 2 weeks and then neck pain, which was attributed by doc's as a pitching injury, so he stopped playing baseball, then his grades started slipping, and he was forgetting things he had learned like how to spell, after competing in spelling bees for years, so I knew this wasn't just teenage rebellion. He was irritable and pretended that he just didn't care about school and sports anymore. But once he got diag. then he admitted to me that he didn't uderstand why he couldn't function like he used to so he acted like he didn't care. You may have some trouble getting a doc. to test for Lyme, but be persistant, it does exist in Florida, so don't let them tell you it doesn't. I will get the name of a Lyme Literate doctor for you, because your doc. may refuse to test or use the Elisa, which is useless, and alot of doc's don't know how to read the bands on the Igenex tests, and they will tell you the test is negative, even when your dd may be positive. A very good websitew to look at symptoms and misdiag's in www.canlyme.com It is a canadian web site, but the symptoms list is excellent. Let me know what you find out, and good luck, I hope you find out what is wrong with her soon, I know how hard it is to have a sick child and feel so helpless not knowing what is wrong with them. Sarah

Mom22, I don't know where you are in Florida, but the Lyme Literate doctor that I found in florida is Dr. Michael Cichon 9804 N. 56th St. Tampa, FL. Ph# 813-985-5513, he aslo treats CFS and Fibro, I'm not sure about adrenal problems, but I do know that it is worth getting your dd tested for LD, because if the Lyme is causing her adrenal problems, but she is not tested and a doc. puts her on steroids it could be detrinemental to her health. Steroids weaken the immune system and allow the Lyme to attack worse. Thus the trouble we Lyme patients with adrenal and thyroid problems caused by Lyme deal with! Hope I could help and if you have ?'s just ask. There is also a Lyme board you can go to if you want to ask other people ?'s. I don't know everything there is toknow about LD, but there are other people on that board that are very knowledgable. I honestly hope that youdd doesn't have LD, but with her symptoms it really makes me wonder. Good Luck, Sarah:

Sarah,

Thanks so much! We did go back to the doctor yesterday to find out her labs are good. Which is a good thing in one way but not in another. The doc did say she wants me to find a doc who specializes chronic fatigue syndrome. So the doc name you gave me would be perfect! I am going to let her doc know about him. My daughter was supposed to have a cat scan today on her abdomen and pelvis, she drank half of the gross stuff when they called to cancel. They didnt want me to get stuck with a giant bill which I am thankful for. They are going to fight the insurance company and reschedule it.
I got her papers signed by her doc for homebound. She even said she cant understand why her old pedi wouldnt sign it because it was obvious she cant function normally. I just have to wait until they hold a staffing and find out what is next. I have no idea what to do next.
Lyme disease, I never thought of that. We moved from Mass to Florida 5 years ago and it was rampant up there. I also had to do the tick check everytime she came in from playing outside. I will look into that also.
Im glad your son is doing better. It gives us hope. Will he be able to attend school next year or will he still be on homebound?

Thanks a bunch
Melissa

Mom22, oh my gosh, you did live on the east coast, make sure that the doc's know this, it is really out of control up there. Both my son and I go to Ct every 3 months to see what we call LLMD's Lyme Literate md's. Dr. charles Ray Jones is the only pediatric Lyme doctor in the country, but at your dd age an adult LLMD would see her, but if you have family in Mass. and she does test positive for Lyme, I would highly recommend him, he is the most loving man I have ever met, and he genuinely cares for every one of his patients. He spent over 2 hours with us the first time we went, and 1 1/2 hours in Jan. But definately get ahold of Dr. Cichon, since you were in an endemic area, there is a very good chance that all of your daughters health problems are related to LD, and you said that your son has health problems too? Are they similar to your daughters or to the list of Lyme symptoms? Everyone is different and experiences different things. I am hoping that my son is well enough to go back to school full time in the fall. He has convinced himself that he will be, and I am positive about it around him, but I just don't know. this morning he wasn't able to get up for his homebound teacher, it's like if he does stuff one day he spends the next day in bed, and that was not like my son at all, he used to go and go, he usually played 2 sports at a time, and could run faster and had more stamina than any of his friends, and now he is exhausted just from doing a little schoolwork. I'm glad you were able to get your daughter homebound services. It took me awhile to get it set up for my son too. Dr. Jones immediately signed the paperwork, but the school kept dragging their feet and making excuses. My son isn't flunking 8th grade, but wants to take it over because he doesn't feel that he has retained anything he has learned this year and doesn't think he can handle high school, plus our HS the 9th graders have their own campus and it is 4 stories high and he doesn't feel that he can go up and down all those stairs everyday, plus attend 8 classes. Please for your daughters sake get her tested by a LLMD who uses Igenex and knows how to read the bands, not a regular doc. I suspected LD for years and couldn't get anyone to listen to me, if I had been more diligent and not let them convince me with their inaccurate tests I could have saved my son years of pain and suffering. I don't want anyone else to have to go through this. Don't let them tell you NO. It's hard to stand up to doc's. I learned the hard way. I hope that everything works out for you, keep in touch and let me know how she is doing and what happens. Oh Dr. Jones in in New Haven CT, I don't think there are many doc's in the entire world that know more about LD than he does. Every child I know with LD here in Texas goes all the way to CT to see him, he has over 10,000 patients. He is mentioned in the book "Coping with Lyme Disease Third Edition, by Denise Lang. It is a very helpful book if you can find it, it will help you alot. Sincerely, Sarah

Sarah,
Thanks for all the info. Yes my son also has medical problems but unrelated to that I am sure of. He has something called IgG subclass deficiency. He was born with it but we didnt find out what the dx was until he was about 5.
I am going to call Dr. Cichon next week to set up an appointment. I am hopefully getting a car for myself this weekend and I dont want to set up an appointment and then have to cancel because of no way there.
My daughter is having an ultrasound done instead of cat scan. Then they will decide after that if a catscan is needed.
She went to school yesterday. She was out Tuesday and Wednesday but went Monday. Well when she came home yesterday she was done for the rest of the day. She fell asleep as soon as she got home. So today she is home again. She woke up feeling awful. It seems that if she does something one day it wipes her out for 2-3 days. The school is in the process of setting her up for homebound. Hopefully it goes through quickly.
Thanks so much

Mom22, I am glad that you are going to take your dd to see Dr. Cichon, I feel so bad for her, she is going through the same thing as my son with the fatigue. I hope that the homebound helps her. My son is having trouble with the homebound because they have it scheduled for 8 in the morning and he just can't function that early, so he is going to try to go back to school every day, but only from 10:45 to 3:25 for his 4 basic classes, so now I have to have another ARD meeting next week. He was missing too many homebound sessions and the school requires that children are either in school or meeting with their HB teacher everyday, that is really hard for Lyme kids, because it's kinda like one day they can function and the next day they need to rest, exactly like you said is happening to your dd. Keep my informed on how she is doing. I usually keep the Lyme board open on my comp. so if you want to post to me on there you can, just put mesage to sarah92202 and I will see it. I am praying that everything works out for you, and that you find out what is wrong with her. Don't believe doc's who tell you she's just lazy or unmotivated, a mother honestly knows when their child is sick. Keep fighting for her, I know this is hard, but you will find an answer. Sincerely Sarah

:confused: Her pedi did do some labs on her which did show her thyroid auto antbodies very high. So she went to see her endocrinologist who didnt feel her symptoms were from that so basically it was left at that.

Any thyroid anti bodies indicate a thyroid concern that needs to be treated. Some drs will only treat if the thyroid stimulating hormone is high or low. However, some drs will treat if anti bodies are present.

There are thyroid anti bodies that are present in both hypothyroidism and hyperthyroidism and graves.

If you have the results, I would post them on the Thyroid Board along with the reference ranges.

Sounds like a thyroid problem to me, esp given the presence of anti bodies.

The antibodies tests are anti TPO anti TG and TSI. Also post if you have TSH and any other results pertaining to the thyroid panel.

Surprisingly, many endos are less up on current lit on the subject than are GPs- as posts on the board indicate. Many, myself included, have made many attempts with unresponsive drs before receiving treatment.


:p