I could really use some clear headed advice about dd's medical condition

[Only me]

I could really use some advice about dd. I'm very very overwhelmed with this and I'm not sure I'm thinking clearly.

 

I've posted several times before about my 14 year old dd who suffers from severe insomnia. She saw a sleep specialist who tried her on several different sleep meds. None of the meds worked and most caused bad side effects. Then we went to the psychiatrist since sleep specialist was sure that the insomnia was caused by the depression. DD has only had about 4 hours of interrupted sleep a night for the past year-yes she is depressed. Actually she didn't seem depressed until a few months ago when she has really started to become desperate for sleep. The psychiatrist agreed with me that the insomnia caused the depression not the other way around. She put her on an antidepressant to help her cope with the depression. She had severe side effects with that too. It is obvious that she can't seem to metabolize medications properly. A few weeks ago her knee swelled up for no apparent reason. The following week her other knee swelled up. A few days later her ankles were hurting. Her sweat also seems to bleach everything (strange huh). Her whole body seems to be having problems.

 

For the past month or so dd has been seeing a chiropractic neurologist. He is the only one who has really listened to us and seems to know what he is talking about. He really thinks that dd is gluten intolerant. We won't get the test results until next week. His theory is that the gluten is causing antibodies in the body to attack all over (her brain, her joints and cause other problems.) We got other bloodwork done last week and the test results showed several problems: Her cortisol is very low in the morning when it should be high. It was also abnormal at noon. She seems to be having trouble metabolizing glucose. She isn't diabetic but seems to be in a pre-diabetic state. She is low on vitamin D. The results indicate that she also has a virus, which has probably been present for several months. She also a high inflammation factor by not rheumatoid.

 

Right now dd is on supplements to help with any brain inflammation. She started a supplement today that is supposed to regulate her blood sugar. She is on vitamin D supplements. Next week the doctor is going to start her on a regimen that should help her fight this virus. All of these are nutritional supplements-not drugs. Once we know whether or not she is gluten intolerent we can go from there. This doctor feels that if she is gluten intolerent and goes off the gluten it will heal her body. Her brain should start working properly-including letting her sleep.

 

DH is a little uncomfortable with the fact that we are getting advice from a chiropractic neurologist rather then an MD. Quite honestly though this doctor is the only one who has given us any hope or guidance. I mentioned bringing dd to a endocronologist and this doctor didn't feel that would be of any help. After this doctor got the cortisol results he talked to an endocronologist. He suggested that we give dd cortisol supplements to increase her level. Our doctor didn't think that was very wise since it can cause the patient to be jittery and insomnia.

 

Do you think it is ok to give this doctor another month? By then we will get all of the test results back and also see if the supplements are working. He is going to retest her in one month. Dh seems to think we need to take dd to an endocronologist or even a university hospital. I'm just worried that they won't be able to help her or will just want to give her more drugs.

[Sputterduck]

Exactly what tests did the chiropractic neurologist run and what exactly were the results?

[Mrs Mungo]

Exactly what tests did the chiropractic neurologist run and what exactly were the results?

 

:iagree: Is she being tested for gluten intolerance, for example?

[Pink Fairy]

Could you explain a little bit about what a chiropractic neurologist is--credentials and what not?

[Jean in Newcastle]

I would continue to use the chiropractic neurologist. And I might add a naturopathic doctor (ND) as well.

 

My own experience - I have severe insomnia, pain, swelling of joints etc. for no apparent reason, non-existent cortisol in the mornings, and some others that you haven't mentioned.

 

I was severely vitamin D deficient. I am taking 10,000 IU every day -and have been for a year because for some reason my body will not keep my levels up even with sun exposure. Vitamin D has helped my pain levels tremendously. It has also helped my fatigue, while helping me to sleep at proper times.

 

I take Quercetin (a supplement) for inflammation.

 

I take Omega 3's (fish oil) for inflammation, and fatigue. Take this one only in the morning. If I take it after noon, I cannot sleep.

 

I take something called a Bio-Adaptagen for my adrenal/cortisol problems. It has licorice in it as well as a bunch of other herbs.

 

I take vitamin B for stress and for inflammation.

 

I take vitamin C for my general immune system.

 

I take acidophilus for my digestive system.

 

I take a Cal-Mag morning and night. Your vitamin D needs calcium and magnesium (and vice versa) in order to work correctly. The Cal-Mag at night helps me to sleep (some).

 

I also have epsom salt baths sometimes at night if I'm having particularly bad insomnia. Epsom salts are magnesium. You can absorb it through your skin in the bath and it won't give you diarrhea like high doses of magnesium taken orally will give you.

 

I take a thyroid pill (natural - from the naturopath) because my thyroid levels are low. I also take selenium (a mineral with the soil is often deficient in) to support my thyroid.

 

None of these supplements have any side-effects - unless I take one that is a stimulant too close to bedtime. Or those that cause diarrhea if you take too much. . . But once you figure the doses and timing, then there have been no side effects.

 

I have personally had a lot more help and relief going with non-traditional medicine. I have been really happy with a naturopathic doctor who uses traditional lab work to aid in diagnosis. (I've had some weird experiences with ones who wanted to diagnose me with crystals etc.)

 

I am really glad that they are testing her for gluten intolerance because that can really affect your body.

[ChrisN in NY]

We went through something similar with one of my dd's when she was 10. It was a nightmare really.

 

Her fingertips hurt to the touch,then they hurt all the time. It came and went for awhile. The pedi prescribed some different things and did tons of bloodwork. Some of her immune numbers were slightly high (sorry; I don't remember exactly now), so pedi consulted with a pediatric rheumatologist.

 

Dd's fingers hurt more and more, then her toes. Repeat all the lab work. Start prednisone.

 

It got worse and worse... arms, legs, even her whole body. She'd sit on my lap and cry, and I cried with her. She couldn't cuddle with me cause it hurt too much.

 

We had an appt with the rheumatologist. He was great to dd and to us, but not helpful. He suggested neurology. Pediatric neurology said dd dind't fit in his box and therefore, has a conversion disorder and he recommends psychiatric treatment.

 

Our pedi was wonderful, helpful, spent hour researching, but we were at dead ends. A friend has taken her ds to a doc similar to yours about 2 hrs away, so we did the same with dd. Our pedi said it sounded like a good idea.

 

Dd saw him for... oh... a year? I wish I could remember. Her diet was quite restricted, and she was on a variety of supplements over the time.

 

She was able to stop the prednisone after a couple months; we had to taper it down.

 

By the end of her time with him, everything was much, much better, and her symptoms had disappeared.

 

Not long after we started seeing this "naturopathic chiropractor" (my term), my ds started with episodes of pain in his finger tips. It was a few months after he started allergy injections. Dd had started allergy injections a few months before her symptoms began. So while I cannot prove it, I do believe this whole thing was an unusual reaction to the allergy injections. As soon as I put that all together, we stopped the injections.

 

This stuff built up in her system over the year+ that she received the shots, and didn't go away overnight or in a few days.

 

I believe will likely be the case for your dd as well. It takes time for the damage and the buildup to clear away. The supplements are needed to help with that.

 

In light of the fact that you got no results from "traditional" MDs, I would encourage you to stick with this alternative practitioner for at least a few months.

 

And I pray that your dd gets relief from all this very, very soon.

[Only me]

We are waiting for the results of the gluten intolerance test (stool and saliva sample which will also test for other sensitivities such as casein).

 

She had a cortisone test (saliva) which showed elevated levels at 8 and noon and normal levels 4 and 10 pm.

 

She had complete blood workup. Her triglycerides are high (192). Her cholesterol is high (180). Her lymphocytes were high at 45 compared to her neutrophils which were 44. He said that this is not normal. Her glucose was 85, which he said was pretty low for someone her age. Her vitamin D was low at 22. There are 3 pages of results but I think those are pretty much the abnormal ones. There may be one or two more.

[Mom0012]

I have mentioned this before on one of your other posts about your daughter, but the more you share about her symptoms, the more I want to encourage you to seek the help of a lyme-literate doctor. I have chronic lyme, which began with years of being unable to sleep and anxiety. I did not have insomnia to the extent your daughter does because I would only be awake from sometime around 1 or 2 a.m. - 6 or 7 and then be able to go back to sleep in the morning,but it was still pretty miserable. I assumed my symptoms were related to perimenopause.

 

Then, about 2 years ago, I suddenly started to have problems in both of my knee joints as well as both of my ankle joints. I continued to try to exercise through the stiffness and wound up literally unable to walk for a couple of weeks. I had a number of other symptoms as well, but the joint problems, especially in the knees and ankles like that are very common in lyme.

 

The testing for lyme is not accurate and a diagnosis really needs to be made based on symptoms and response to treatment. There is also a lot of controversy right now about chronic lyme disease, so you really need to find a doctor who knows what they are doing and who is willing to treat. Many doctors will run the standard Labcorp test, and if it comes back negative, they will say you don't have lyme.

 

This may not be what is going on with your daughter, but please keep it in mind if you don't find answers elsewhere.

 

Lisa

[Sputterduck]

We are waiting for the results of the gluten intolerance test (stool and saliva sample which will also test for other sensitivities such as casein).

 

She had a cortisone test (saliva) which showed elevated levels at 8 and noon and normal levels 4 and 10 pm.

 

She had complete blood workup. Her triglycerides are high (192). Her cholesterol is high (180). Her lymphocytes were high at 45 compared to her neutrophils which were 44. He said that this is not normal. Her glucose was 85, which he said was pretty low for someone her age. Her vitamin D was low at 22. There are 3 pages of results but I think those are pretty much the abnormal ones. There may be one or two more.

 

Can you give us some exact numbers for the cortisol test?

[cillakat]

I'd do all.....continue with the chiro, head to a major university AND see a naturopath.

 

It's pretty darn important that cortisol levels be in a good range....without it, one can't stay asleep (though it sounds like she can't fall asleep either).

 

She likely needs 1000 IU vitamin D3 to maintain optimal levels. She needs multiples of that to get up to optimal levels quickly. It's not unrealistic to consider 4000 IU D3 per 25 lbs body weight for 8-12 weeks (or longer if needed) to get her D levels up as quickly as possible.....then dropping down to the maintenance dose of 1000 IU per 25 lbs body weight (for the winter and maybe the summer depending on sun exposure).

 

She has to sleep. She really really has to sleep. To achieve that, all stops should be pulled out asap. This has long term far reaching consequences in ways that are deeply concerning to even consider so please please please see all specialists - natural, alternative, mainstream, expert in the most timely manner possible.

 

I'm assuming you already have her on a high quality high potency multi, extra b vites especially b5 and significant doses of vitamin C? The b5 and C are good adrenal support.

 

Fwiw, I would follow the recommendation to get off of gluten and would take it a step further. I'd take her off gluten, dairy and *all grains*, instead relying on produce, nuts, beans, lentils, eggs and high quality meats for her nutritional needs.

 

How low is her cortisol? Has she developed Addison's disease?

 

Wishing you all the very very best in getting answers soon,

Katherine

[sbgrace]

It sounds like the chiro. neuro is on the right track. Vitamin D for example has proven serious impacts on the body. Many MD's would test for that. I would add, though, that she needs her calcium checked just to make sure her parathyroid is functioning well. http://www.parathyroid.com/parathyroid-symptoms.htm# Her calcium should be 9 or below and I expect it will be. At her age parathyroid issues would be very, very rare. But given her symptoms and the low vitamin D it should probably be checked.

 

Her tests showed adrenal fatigue which is a real condition. It almost always goes along with something else (vitamin D, thyroid, gluten issues very common). He checked her thyroid I assume? I suspect the adrenal stuff is a result of the stress of lack of sleep and the like.

 

I'd stick with the person, no matter the degree, who has found something to treat and move on if you fix those things and you still have issues. I'd perhaps make an appointment with a pediatric endo (who might have tested vitamin D too...) for the future. You can cancel if she's doing better and doesn't need it. Or you can go and listen and take what's good and leave what's not.

Edited October 16, 2009 by sbgrace

[AnnetteB]

In my own experience, traditional MD's are very quick to prescribe medication to treat the symptom and not search for the cause. Our own pediatrician correctly identified a strange form of eczema and prescribed a strong ointment (that didn't work). I researched eczema and its causes on my own and through elimination diets discovered the many triggers that our affected children have. We have completely cleared their eczema and they are learning to live corn, wheat and soy free. I'd give the naturopath more time to determine the causes. The advice above sounds very wise. Vitamin D, women's supplements and epsom baths are very safe. With our food supply so sadly lacking in nutritional value it is a wonder anyone can grow a healthy body. Best wishes

[vettechmomof2]

We are waiting for the results of the gluten intolerance test (stool and saliva sample which will also test for other sensitivities such as casein).

 

She had a cortisone test (saliva) which showed elevated levels at 8 and noon and normal levels 4 and 10 pm.

 

She had complete blood workup. Her triglycerides are high (192). Her cholesterol is high (180). Her lymphocytes were high at 45 compared to her neutrophils which were 44. He said that this is not normal. Her glucose was 85, which he said was pretty low for someone her age. Her vitamin D was low at 22. There are 3 pages of results but I think those are pretty much the abnormal ones. There may be one or two more.

 

I cannot help with the other levels but her GLucose level is perfectly normal at that one blood test. Not too low for her age at all.

Having 2nd and 3rd opinions are always good to get anyway so seeing a ped endo I believe would still be worth it.

Also celiac disease is an auto immune disease and there are other A.I's that can cause swelling of the limbs and joints.

I hope that you can get some results soon.

[Sputterduck]

I agree that the glucose level is normal.