Concerned and Frustrated

[Feralpeg]

DD has had health issues since she was about twelve. She's been to numerous doctors and had a lot of different tests. Most of the time, they would just say her tests are normal. Well, that really didn't help because she was still having problems. Eventually, they said she had IBS. Great. IBS is a catch-all diagnosis for gastrointestinal disorders that they can't diagnose.

She eventually developed a bad rash on her back. That was a couple of years ago. It never goes completely away. I took her to a dermatologist who did a biopsy. He said it was hives. Big help. Nothing to tell us why it was there...just hives. I started doing a lot of research and narrowed it down to a couple of more obvious possibilities. She was tested for Celiac Disease. That came back normal. So, she went on a low wheat diet. It helped a bit, but the rash is still there and she still has a lot of issues.

Now, she's started having additional problems. She isn't sleeping. When she does sleep, she sleep walks or has what she refers to as "Waking Dreams". She exhausted. She's started having anxiety attacks and is depressed. I'm sure part of this is the fact that she is so tired. I've asked her if she feels stressed out, but she tells me she isn't. She says the attacks just come out of nowhere.

For several years, she's had a tendency to have hot flashes. She also seems to have periods of low blood sugar. She did a glucose tolerance test and it came back normal. I've seen this happen to her numerous times.

She's been on birth control pills since she was fourteen. The doctor put her on them for her complexion. They really have never seemed to help. She still has a lot of acne problems. I wanted to take her off the pills about a year ago, but her doctor thought she should continue taking them. Now, of course, she has a boyfriend and she doesn't want to go off the pill. I'm starting to wonder if she doesn't have some type of hormone imbalance.

I'm very concerned about her. To make matters worse, I'm four hours away. I really don't know what to do about her. I wish we could figure this out. Sorry. I'm just sitting here by myself worrying and needed to vent.

 

[Goofyluver]

darlin'. I understand how tough it is to have a kiddo who has medical issues. Just many many

 

[The Mystery Machine]

My 12yodd is a hive master she can pop one off at the mere thought of me shaving her armpits. She won't do it of course because she is afraid.

Stress is a big trigger with hives.

My 12yodd is going to go to a new doctor (we moved recently) and we are going to discuss her balance problem and her anxiety issues.

It is to the point where she needs meds, I think. She is a perfectionist, likes to do well in school. Has a fear of failure.

Anyway I am getting her medically checked out first and will work with a ped doc.

Has your dd ever seen a counselor or have taken any anxiety meds?

My rule here was when it begins to interfere with your life then you are getting seen. The balance issue is a little tougher. I am hoping it is ear related.

 

[ireland_nicole]

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.)

Don't give up, if you think there's something going on, there may well be. Not necessarily a big something, but I really trust mom instinct on this, and I think it's worth continuing to investigate. In the meantime, and remember to "just keep swimming."

 

[DVCLiz]

Hugs to you both, Peg. My daughter has IBS and is lactose intolerant, too, so I know how it can add to the stress of a normal young adulthood. Hope you get to the bottom of it and get her some relief.

 

[ireland_nicole]

Sorry, forgot to add, it might be worth having the hormone levels checked with an endocrinologist as well.

 

[Pig Pen]

My DD had similar symptoms, irritable bowel, migraines, skin problems, aches and pains, chronic fatigue. After lots of tests for Lupus, Lyme Disease, etc...she was told she had Celiac and went on gluten-free diet and was referred to a specialist. Initally this was a relief as we finally knew what was wrong, but a further biopsy ruled it out, so she was back at square one.

She had her eyes lasered a few years ago and went back for a routine check-up and the M.D. noticed something funny. It seems that she has developed an eye condition that is a pre-cursor for MS.

Fortunately, an MRI does NOT show any brain lesions, so she has NOT been officially diagnosed with MS, but she is now taking part in a study to track her symptoms.

I don't mean to frighten you, but I understand how it is when you KNOW something is wrong, but can't figure it out. I hope your DD feels better soon.

 

[CookieDiva]

My friend has gone through many of the same things that your DD has over a number of years.

Several months ago they diagnosed her with Crohn's Disease. Like she said, she wasn't exactly happy that she got that diagnosis, but was glad that she finally had an answer to her many problems over the years.

I don't know if this could be your DD's problem, but I think that I would pursue ruling it out if is it not.

I hope that your DD and you find an answer soon.

 

[Pea-n-Me]

PCOS comes to mind as a possiblity. http://health.msn.com/womens-health/articlepage.aspx?cp-documentid=100078563

Keep in mind PCOS is not well understood, even in the medical community. It's also not necessarily indicative of an "ovarian" problem, not sure who named the syndrome but it was a poor choice. Also, each patient will be different in how the syndrome manifests itself.

 

[The Orchid]

Have you ever had her tested for autoimmune disease?

 

[honugirl]

Get thee to an endocrinologist. A lot of those things can be signs of my rare disease, Cushing's, which is curable! The rash, the acne, the not sleeping, anxiety, the depression., intestinal issues, we have blood sugar problems. Check www.cushings-help.org for more info and if you think she may fit the symptom profile, the first thing to do is get a series of 24 hour urine free cortisol tests done. If you want more info, feel free to PM me, I can talk to you about it. But overall, it really sounds like an endocrine problem.

 

[Feralpeg]

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.

 

[Disney Doll]

PCOS comes to mind as a possiblity. http://health.msn.com/womens-health/articlepage.aspx?cp-documentid=100078563

Keep in mind PCOS is not well understood, even in the medical community. It's also not necessarily indicative of an "ovarian" problem, not sure who named the syndrome but it was a poor choice. Also, each patient will be different in how the syndrome manifests itself.

PCOS popped into my head too when reading the OP.
Great mind think alike.

 

[FSUDisneyGirl]

Is she at FSU? I just graduated from there in fall 06- actually, I'll be there this summer working a summer camp! I had a friend with a similar situation...she ended up finding a good doctor (I think at one of the hospitals in Tallahassee?) and was able to finish up the semester. Hopefully your daughter will be able to as well, but if she can't she will understand that taking some time off does not mean it's the end of the world! Her friends will be there when she gets back!


Good luck, and I hope you all figure this out soon!

 

[themarquis]

Has she gotten an endoscopy/colonoscopy with biopsies? I agree that something like Crohn's disease (which mostly affects the intestines/colon but is a multi-systemic disease that can make all sorts of wacky things happen to the body ) needs to be ruled out. A biopsy would also let them check for for definite signs of Celiac disease.

Honestly, I can see why you thought of Celiac, but given that she did not see significant improvement on the diet (I assume she wasn't just avoiding wheat but was doing a full celiac diet?? ) I would wonder whether that diagnosis would be correct (unless you get a positive bowel biopsy). Any slight improvement that has happened may be coincidental, because going gluten free would generally result in remission of most symptoms if she really did have Celiac disease.

Another thing to look into are thyroid problems -- has she been checked for low/high thyroid? (the anxiety/depression, acne, tiredness, etc. can be symptoms)

Finally, there are some other autoimmune disorders (lupus, RA, etc.) that can present with non-specific signs like this early on. Has she had her SED rate and inflammatory markers checked? Has she ever seen a rheumatologist?

Oh one more thought (sorry, just trying to throw some things out there), does she snore? Has she ever been checked for sleep apnea? The severe exhaustion, "waking dreams", and depression are big red flags of a sleep disorder. One of the things that can happen when a person is sleep-deprived (i.e., due to apnea) for a long period of time is that their immune system goes to crap (BTDT ) and all sorts of other health problems can flare up because your system is getting totally worn down.

 

[Pea-n-Me]

Great mind think alike.

 

[ireland_nicole]

See if she can get into someone soon; maybe you can work your schedule out to get a few days off together and "bundle" appts? If you can, try not to pull her out, it would add new concerns to her list. But don't just stop looking for an answer when a dr. blows you off; GP's are (some, certainly not all) notorious for that, and it can be really frustrating. As impossible as this will sound, if you can, try not to obsess over it, but definitely get a new dr. and get those appts. Praying for you and your daughter, and hoping she gets some sleep tonight; (also, she needs her thyroid checked if she hasn't already; that can cause some of that stuff too.) Fact is, a lot of different things can cause em, and that's why it can be so frustrating and take so long to get a good dx. You're being a great mom. Don't give up!

 

[Feralpeg]

Is she at FSU? I just graduated from there in fall 06- actually, I'll be there this summer working a summer camp! I had a friend with a similar situation...she ended up finding a good doctor (I think at one of the hospitals in Tallahassee?) and was able to finish up the semester. Hopefully your daughter will be able to as well, but if she can't she will understand that taking some time off does not mean it's the end of the world! Her friends will be there when she gets back!


Good luck, and I hope you all figure this out soon!

Yes, she is at FSU. Fortunately, she is coming home for spring break in two weeks. She already has a gynecologist appointment because she has been having recurring yeast infections. That will be a good starting point. I'll try to get her gynecologist to give us some recommendations for other doctors. If necessary, I'll get the names of doctors in Tallahassee. I'll take some time off and go up there for a week and get through as many appointments as possible. I'm not giving up. I just feel so bad for her. This has been going on for years, but it is getting worse.

 

[The Mystery Machine]

Good Luck!

I finally have a ped that is going to work with us. It is tough out there.

 

[themarquis]

Yes, she is at FSU. Fortunately, she is coming home for spring break in two weeks. She already has a gynecologist appointment because she has been having recurring yeast infections. That will be a good starting point. I'll try to get her gynecologist to give us some recommendations for other doctors. If necessary, I'll get the names of doctors in Tallahassee. I'll take some time off and go up there for a week and get through as many appointments as possible. I'm not giving up. I just feel so bad for her. This has been going on for years, but it is getting worse.

I couldn't tell from this whether she has a PCP? It really does sound like there have been a series of different doctors/specialists who have investigated individual symptoms but nobody has really sat down with her and tried to put it ALL together, take a really detailed history, and set up some appropriate specialist appointments for her.

I don't know if the gyno would be the best person to start with, but if you were able to line her up with a really good PCP type person, go down there to be with her and advocate for her and talk to the PCP, that might really get the ball rolling.

I don't know if this would be an option for her, but I go to a nurse practitioner clinic where they are extremely attentive to each patient, do detailed histories, ask tons of questions, and schedule long (like sometimes 1+ hr) appointments if necessary. They have ended up sending me off to various specialists, because they aren't "experts" in any one thing, but they are basically just super attentive and want to get to the core of a patient's problems. Sometimes a traditional PCP misses stuff because appointments are short (like 10 mins?) and they have so many patients that they end up being very cursory.

Anyway, best of luck to you -- I'm sure you can get to the bottom of this