Concerned and Frustrated

[mfd25wife]

Hi. I'm wondering about autoimmune also. Was the rash truly hives? I don't mean to offend, but I had a horrible rash on my back a couple of years ago that didn't itch. It was extremely painful. It was biopsied, but had to be sent to CA to some lab that did a particular test. It came back as a type of autoimmune response. A couple of months later they saw on an MRI that my thyroid had atrophied, which was a definite autoimmune response. I too tested negative for Celiac, but I also know that if I eat many bread products, I do visit the little girls room a lot, like 16 times a day. I've always fought yeast infections, bladder infections, and hypoglaucemia. I do have Hashi's, and a cyst on my pituitary gland. Most of my issues are a result of the Hashi's they believe. I wish her well. Don't let the doctor's blow her off. She will eventually find one that will listen to her. I can't remember where you said she is. I know a really good one that was here, but moved to the Destin area. He's a PCP, but a good caring one that will keep trying to find what's wrong.

 

[jemgumby]

My niece has had numerous medical problems and it started when she was like 8 or 9 and she is 27 now! Bottom line she is now diagnosed with Crohn's disease (the docs thought it was just irritable bowel when it first started but now it is Crohn's). Also the awake dreams your daughter referred to makes me think of Narcolepsy. Which oddly enough the same niece has! She got diagnosed with that when she was 16. She had to have a sleep study to determine the narcolepsy. She has to take Ritalin to function during the day and if she does not she will fall asleep. I have seen her when she forgets to to take her meds and she starts slurring like a drunk person and gets extremely sleepy. It was very hard on the family just trying to find out what was wrong with her. I'm no medical expert but if you would like I would be happy to let you get in contact with her. Because of her experience she knows what it likes and doesn't mind a bit answering questions.

 

[themarquis]

My niece has had numerous medical problems and it started when she was like 8 or 9 and she is 27 now! Bottom line she is now diagnosed with Crohn's disease (the docs thought it was just irritable bowel when it first started but now it is Crohn's). Also the awake dreams your daughter referred to makes me think of Narcolepsy. Which oddly enough the same niece has! She got diagnosed with that when she was 16. She had to have a sleep study to determine the narcolepsy. She has to take Ritalin to function during the day and if she does not she will fall asleep. I have seen her when she forgets to to take her meds and she starts slurring like a drunk person and gets extremely sleepy. It was very hard on the family just trying to find out what was wrong with her. I'm no medical expert but if you would like I would be happy to let you get in contact with her. Because of her experience she knows what it likes and doesn't mind a bit answering questions.

Those "awake dreams" made me think of narcolepsy, too. I thought I had this for a long time, and then ended up being diagnosed with apnea. It turns out that the "awake dreams" (also known as hypnagogic hallucinations) are a hallmark sign of some kind of sleep disorder. A person gets them because there is some disorder in REM (dream) vs. non-rem sleep vs. awake state. This can happen because of narcolepsy (a disorder where REM sleep intrudes into waking state) or severe sleep deprivation (caused by sleep apnea or other conditions -- basically, sleep deprivation causes REM sleep to take over shallow sleep b/c you're so desperate for REM!).

Anyway, it combined with the exhaustion is something to really investigate -- perhaps with a sleep study.

 

[Eeyores Butterfly]

Thanks everyone. I definitely think it is time to force the issue. Her doctor was too quick to just blow us off when the initial blood tests came back normal. I'm going to insist that she be seen by an allergist and an endocrinologist. If nothing shows up there, I will arrange for her to have a biopsy to check for Celiac's. She had a biopsy when she was about 15 to check for another condition (the name escapes me now). That was normal, but I don't remember them checking for Celiac's.

I just wish it was closer to the end of the semester. She won't finish up until the end of April. If it gets bad enough, I'll pull her out of school and she'll just have to repeat the semester. She won't like that idea, but she can't go on without any sleep. I may have to make a trip to Tallahassee. Now, if only Disney will let me off. Since I'm part-time, I get no sick, personal or vacation days. If I miss a day, it counts as a point against me. Too many points within a three month period and you are out of there. That won't stop me if Kendall needs me, it is just something else for me to fret about.

I used to be a CP and I heard CM's talking all the time about FMLA. I even heard a manager tell CPs that we qualified for FMLA. If you take off under FMLA they cannot count it against you. Perhaps you can talk to your homeroom manager about that? I've found that some managers are really great about working with you when it comes to stuff like that, and some not so much. What role are you?

I wish your daughter luck and hope they get it figured out soon.

 

[Principessa1284]

Thanks everyone. I definitely think it is time to force the issue. Her doctor was too quick to just blow us off when the initial blood tests came back normal. I'm going to insist that she be seen by an allergist and an endocrinologist. If nothing shows up there, I will arrange for her to have a biopsy to check for Celiac's. She had a biopsy when she was about 15 to check for another condition (the name escapes me now). That was normal, but I don't remember them checking for Celiac's.

I just wish it was closer to the end of the semester. She won't finish up until the end of April. If it gets bad enough, I'll pull her out of school and she'll just have to repeat the semester. She won't like that idea, but she can't go on without any sleep. I may have to make a trip to Tallahassee. Now, if only Disney will let me off. Since I'm part-time, I get no sick, personal or vacation days. If I miss a day, it counts as a point against me. Too many points within a three month period and you are out of there. That won't stop me if Kendall needs me, it is just something else for me to fret about.

Can she talk to her professors about them letter her miss a few days of classes? Some are more lenient than others. I had to have surgery a few years ago and it just couldn't wait until summer (it wasn't life-threatening, but I was extremely uncomfortable). I had to miss a week, so I talked to all of them ahead of time, and for the most part, they were SO understanding. One made me get a doctors note for the missed classtime and made me come in early a few days, but that was the most sevre I got from them.

Side note - can't you request the time off ahead of time? I TOTALLY understand not getting paid days off (being a CM myself), but with some careful planning you could maximize them. If not, is there someone who can take your scheduled shifts? I don't know what area you're in (ie, O&T would be more difficult to do this), but the area that I support has seasonal people who used to get 1-2 days, not getting scheduled at all and are scambling for hours if anyone needs a day off.

Good luck! It's so hard to have a family member with health problems, especially if the cause is a mystery.

 

[Mom2Nick]

Hi Peg;
First off, has she seen an allergy/immunology spec.? Also, the only way to be sure about Celiac is a biopsy; yes, the blood test is great, but not 100% accurate; fairly high false negative rate. If they get a positive blood test, they definitely have Celiac, but a negative needs a biopsy (I know, b/c DD is very complicated medically, and the dr just casually mentioned we'd be needing to do the biopsy this year- great.)

Not necessarily true about the blood test. My son has a positive blood test, a negative biopsy and we did a trial run of a GF diet for a year with no changes in his life at all. He does not have Celiacs.

OP - You mentioned that she went on a "low wheat" diet and felt a bit better. Have you tried a Gluten Free diet at all? I would suggest you do that even if it's only for a month to see what happens.

 

[Feralpeg]

I used to be a CP and I heard CM's talking all the time about FMLA. I even heard a manager tell CPs that we qualified for FMLA. If you take off under FMLA they cannot count it against you. Perhaps you can talk to your homeroom manager about that? I've found that some managers are really great about working with you when it comes to stuff like that, and some not so much. What role are you?

I wish your daughter luck and hope they get it figured out soon.

I work for the Disney Florist. I will talk with my manager and let her know what is going on. I'm sure we can work something out.

 

[Feralpeg]

Can she talk to her professors about them letter her miss a few days of classes? Some are more lenient than others. I had to have surgery a few years ago and it just couldn't wait until summer (it wasn't life-threatening, but I was extremely uncomfortable). I had to miss a week, so I talked to all of them ahead of time, and for the most part, they were SO understanding. One made me get a doctors note for the missed classtime and made me come in early a few days, but that was the most sevre I got from them.

Side note - can't you request the time off ahead of time? I TOTALLY understand not getting paid days off (being a CM myself), but with some careful planning you could maximize them. If not, is there someone who can take your scheduled shifts? I don't know what area you're in (ie, O&T would be more difficult to do this), but the area that I support has seasonal people who used to get 1-2 days, not getting scheduled at all and are scambling for hours if anyone needs a day off.

Good luck! It's so hard to have a family member with health problems, especially if the cause is a mystery.

She is such a good student, I'm sure she could work something out with them. As a mom, I just hate having her so far from home when she's ill. I know that if I suggest that she not finish the semester, she'll be very upset. I'll only play that card if it becomes very necessary.

 

[Feralpeg]

Not necessarily true about the blood test. My son has a positive blood test, a negative biopsy and we did a trial run of a GF diet for a year with no changes in his life at all. He does not have Celiacs.

OP - You mentioned that she went on a "low wheat" diet and felt a bit better. Have you tried a Gluten Free diet at all? I would suggest you do that even if it's only for a month to see what happens.

She did work with the nutritionist at the university and went Gluten Free for a couple of months. It helped a little, but not much.

 

[manning]

Have you tried the Mayo Clinic. They are great !!!

I know of two people who were chasing around for a length of time to figure out what was wrong with them. They live in the chicago area which means they had a number of doctors to go to.

Both went to Mayo and within days they had it figured out.

 

[honugirl]

Recurrent yeast infections? Many of us with Cushing's get those too.

I'd run not walk to an endocrinologist. I'll have to go look and see who the top people in Florida are. Don't go to the endocrine department at Mayo. I've never heard anyone have a good response from them.

 

[4nana]

Peg, want to send prayers and hugs to you and DD . Know what it's like to be concerned about our babies, specially when they're long distance. Hope you both get the answers you are seeking, so help and relief is on the way real soon for your sweetie.

 

[Feralpeg]

I contacted my brother this morning. Until recently, he was an exec with Dexcom. They specialized in products for diabetics. He knows many top notch endocrinologists. He gave me the name of a couple of doctors here in the Orlando area. I will contact them and set up appointments for Kendall. We will figure this thing out. It may take some time, but we'll get there.

Thank you all for your concern and suggestions. You've given me some great information. I'll update you all when we find out more.

Peggy

 

[Trish Bessette]

Best of luck to you and your daughter!!

I just started working with an endrocronologist for my dd (15) for the past 5 months she has been getting hot flushes in the face. She says her face/neck feels like it is burning up. Her cheeks get really red. Most times she gets a headache and bloodshot eyes. Usually it only lasts about an hour but she can get 3-4 a day.

They tested her throid and was checked to see if her body was producing too much adrelain (sp?) and both came back normal.

I'm stumped but just like you worried as to what on earth is happening.

My thoughts are with you.

 

[Feralpeg]

Best of luck to you and your daughter!!

I just started working with an endrocronologist for my dd (15) for the past 5 months she has been getting hot flushes in the face. She says her face/neck feels like it is burning up. Her cheeks get really red. Most times she gets a headache and bloodshot eyes. Usually it only lasts about an hour but she can get 3-4 a day.

They tested her throid and was checked to see if her body was producing too much adrelain (sp?) and both came back normal.

I'm stumped but just like you worried as to what on earth is happening.

My thoughts are with you.

Thank you! I'll be thinking about your daughter as well.

I called the endocrinologist my brother recommended to see what is necessary to get an appointment. She needs to be referred by either her gynecologist or GP. She needs to have basic blood work done and the results faxed to the endocrinologist prior to her appointment. She has an appointment already set for mid-March with her gynecologist. I will ask her to give us a referral and to set up for the lab work. If it cannot be done in that week when DD is home, I'll ask her to set it up at a lab in Tallahassee. That way, everything will be set for the endocrinologist when the semester is over and she comes home.

When I talked to Kendall this morning, she felt better just in knowing that we are going to try to figure this out.

 

[ireland_nicole]

If the gyn is the same that she has always seen, she may be able to "make" the referral now, so that she can see both while she is home. If you explain the situation it may be enough to start the process. Also find out exactly what blood work they want done beforehand; that way anything else you need can be done at the gyn appt. Have Kendall get a copy of her labs from the other dr. that ordered them; well worth having as they'll need to be referenced by everyone. You're doing great!
Nicole

 

[honugirl]

And from personal experience, always, always, always get copies of labs, chart notes, etc. right from the get go. Before you've even left the office get as much as you can. Then get a 3 ring binder and organize it into sections. This will help you keep everything straight going from doctor to doctor and believe me, you won't believe how many times my friends and I have gotten our lab work from doctors offices when they've told us the values are fine and they've been abnormal. So it's really important to get copies of EVERYTHING!!!!!!!!!

 

[Lanshark]

Have you tried the Mayo Clinic. They are great !!!

I know of two people who were chasing around for a length of time to figure out what was wrong with them. They live in the chicago area which means they had a number of doctors to go to.

Both went to Mayo and within days they had it figured out.

My SIL was tested for everything in the book. She went through this for about 8 years before going to Mayo. She was scheduled to stay for a week. They figured it out before that and put her on the correct medications.

 

[twinmomplus2new]

We have talked about this before. Fisrt of all she is NOT taking the minocyclne for her skin correct?

If she is stop taking it! I really think you need to explore PCOS and Lupus more aggressively. She needs to get her sed rates, both when she is feeling crappy and when she is feeling well. it has to be over a course of time.

This following description is mostly what I am thinking regarding these issues you guys are having.. Drug induced systemic lupus..........
resembles systemic lupus erythematosus (SLE). It results from a hypersensitivity reaction to a medication. The drug may react with cell materials, causing the body to form antibodies that attack the body's own healthy cells.

Several medications are known to cause drug-induced lupus. They include:

Chlorpromazine
Hydralazine
Isoniazid
Methyldopa
Penicillamine
Procainamide
Quinidine
Sulfasalazine

In my case i develpoed drug induced lupus after taking Minocycline. It took several years of worsening symptoms to be diagnosed. having many, many of the exact same symptoms as your kendall.

I am now not able to take absolutely anything or any derivetive of the above list. is there anything here she may be on?


Many birth control pills contain things to help with skin issues. check the package inserts carefully are any of the above lsited even in smalll amounts?

 

[Feralpeg]

We have talked about this before. Fisrt of all she is NOT taking the minocyclne for her skin correct?

If she is stop taking it! I really think you need to explore PCOS and Lupus more aggressively. She needs to get her sed rates, both when she is feeling crappy and when she is feeling well. it has to be over a course of time.

This following description is mostly what I am thinking regarding these issues you guys are having.. Drug induced systemic lupus..........
resembles systemic lupus erythematosus (SLE). It results from a hypersensitivity reaction to a medication. The drug may react with cell materials, causing the body to form antibodies that attack the body's own healthy cells.

Several medications are known to cause drug-induced lupus. They include:

Chlorpromazine
Hydralazine
Isoniazid
Methyldopa
Penicillamine
Procainamide
Quinidine
Sulfasalazine

In my case i develpoed drug induced lupus after taking Minocycline. It took several years of worsening symptoms to be diagnosed. having many, many of the exact same symptoms as your kendall.

I am now not able to take absolutely anything or any derivetive of the above list. is there anything here she may be on?


Many birth control pills contain things to help with skin issues. check the package inserts carefully are any of the above lsited even in smalll amounts?

She is not currently using anything on her skin. I'll have her check the ingrediants of her birth control pills. I don't remember what she has used in the past, but I'm sure she will. I'll try to get the information and check it against your list.

I'll also ask for copies of all her labs.

Thank you all for you suggestions and concern.