Young child with PLMD

RLS/WED occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.
Amy
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Young child with PLMD

Postby Amy » Fri Aug 22, 2008 5:01 pm

I don't know why I didn't find this message board sooner. My almost 5 year old has been battling sleep disorders since infancy. He has always hated sleep, even as a young baby. Fought naps; refuses to sleep even if falling down drunk with fatigue; and is exhausted most of the time (although with kids, sometimes he "looks" tired and sometimes he looks "wired". He's never complained about his legs, so I don't know that he has RLS. A few sleep studies confirmed PLMD, which was clinically assisted by Neurontin, but didn't have any "real life" effect. Meaning, the sleep study showed fewer PLMs, but he was just as tired. We've experimented with Clonidine, Klonopin, melatonin, and of course, the obvious good sleep hygeine techniques that seem to have NO impact whatsoever on him.
SO, after nearly 5 years of getting nowhere except for what, to me, seems like drugging my young child with very big gun meds with no real benefits, and watching him missing out on so much in life as result of chronic fatigue, does anyone have any magic solutions? Any thoughts? Any anything? Anything??

And my second question, since he is still on the Klonopin at the moment, can anyone tell me whether it should have an immediate effect on him or whether it is supposed to take a few weeks to work? I thought benzos worked immediately, but the ped. neuro tells me it should take about 4 weeks to work. In the meantime, I am yet again watching my child more fatigued from an adult drug and no positive benefits.

Frustrating to say the least.

Polar Bear
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Postby Polar Bear » Fri Aug 22, 2008 8:48 pm

Amy, I have no answers, but my thoughts are with you and your son.
Betty
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Amy
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Postby Amy » Fri Aug 22, 2008 10:17 pm

Thank you. I appreciate your kind words

ViewsAskew
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Postby ViewsAskew » Sat Aug 23, 2008 6:31 am

I sure wish I knew something to help, but I don't. This must be so frustrating.

If you are a member of the RLS Foundation ( I highly recommend it to anyone :) ), you can write to the Ask a Doctor section of the newsletter. Yu can still write as a non-member, but I don't know if you'd see the response.

You can also write to Dr Buchfurer, as he posts questions and replies at www.rlshelp.org. I know he's got quite a few kids in his practice.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Amy
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Postby Amy » Sat Aug 23, 2008 11:43 am

THANK YOU! I sure will!!!

mackjergens
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RlS/Children info

Postby mackjergens » Sun Aug 24, 2008 6:01 pm

Amy,
here are afew web sites I found with info for children with RLS/PLMD. I hope you will find something in these that will be helpful

http://www.pubmedcentral.nih.gov/articl ... id=1785221

http://www.sciencedaily.com/releases/20 ... 113419.htm (mayo clinic info)

This site talks about children with rls/plmd and iron deficiency

http://www.doctorslounge.com/pediatrics ... /index.htm

http://www.nwcn.com/health/children/sto ... 429dc.html


I am sure there are many more sites with great info on this, but maybe these will get you started in learning about RLS/PLMD, we all find that the best thing for us to do is become very educated about this illness, as it seems most Drs know so very little about it.

One thing I would like to ask, does your child take any type of allergery meds? you need to know that almost ALL antihistimes in cough meds, or allergery meds will affect rls/plmd. Just read all that you can, you will find a list of meds to avoid and even foods to avoid on www.rlshelp.org. I suggest that you print out these and keep with you at all times,so when you child becomes ill from a cold or flu, you will be able to guide the Dr in the med that your child can take.

Even things like Tylenol PM meds or other OTC meds for sleep will make this problem become worst. Again, just read as much as possible. Good luck and keep us posted.

Amy
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confused newbie trying to take advantage of all resources!!

Postby Amy » Mon Aug 25, 2008 6:38 pm

Thank you for the info.
Mack, my son is no longer taking antihistamines, although I wasn't aware of the link between them and RLS. Good to know.

Great links. I haven't yet read them, but I saw one about iron. Apparantly his ferritin levels are normal.

Bear with me folks, as I am new to this website and the RLS Foundation...

ViewsAskew, is the membership for the RLS Foundation the paid membership? I registered for "this" (not really sure anymore what "this" is, :? ) website and then for the message board, so I thought I was all squared away. Suddenly I find myself only able to log onto this message board (and not the main page) and I am now completely confused as to what is what. I would LOVE to write to Ask a Doctor, but I am lost.

As for the rlshelp.org site, I seem to be having a hard time navigating it I(I'm not usually so inept at things like that). Can someone tell me where exactly I can find the info about foods to avoid? Ditto regarding how to contact Dr. Buchfurer. I gathered there was an email address for him somewhere but I wasn't able to locate it. Thanks.

ViewsAskew
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Postby ViewsAskew » Mon Aug 25, 2008 7:07 pm

Let's see if I can answer your questions...

Per the Foundation. there are multiple ways to participate in various offerings of theirs, but only one way to "join." Go to this link and you will actually join the Foundation. You will get quarterly newsletters and your donation will allow the Foundation to fund research, pay for this Discussion Board, hold regional meetings, etc.

When you "join" this discussion board or the online community, you simply get access to this board and the online community area. But, that doesn't get you the quarterly newsletters or help ensure that the Foundation can help ensure research continues to take place or that they can advocate for us. The Ask a Doctor is part of the newsletter you'll get once you join.

Dr Bs site is hard to navigate.

First, go to the site. Then, look at the menu options on the left part of the page. First, click on each of those options on the left side menu. Each of them will take you to information, albeit not easily laid out. On the second link (RLS/PLMD treatment page), you can find lots of info on treating RLS. To send the email, look for the words RLS Patient Letters Page in that left menu area. Click on the most current page (82 as of today).

At that point, you have two options. First, it's great to read through these letters because they provide great information. You can also search them for words like "child" or similar to find other responses about children. Second, you can send an email; the link is at the top of the page.

I think you also wanted to know where to find the foods to avoid. There is no list that I know of, but there is a many foods that people have reported that bothered them. I point out the difference because there have been NO studies showing that food can have an affect. Clearly, however, some people report an association. In addition, I don't know where to find a list of what people have reported that bothers them. The best I can suggest is to read all of the posts in the non-pharma section and the general RLS section.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

mackjergens
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List of drugs/food to avoid

Postby mackjergens » Tue Aug 26, 2008 6:36 am

Go to www.rlshelp.org on the left side of screen look for.
RLS/PLMD Treatmeant pages. Click on that link..

Then scroll down to "Other RLS/PLMD Treatments.
Then down to #6 Drugs and Food to avoid to improve RLS.

__________________________________________________________
Copied/pasted from www.rlshelp.org

6) Drugs and Foods to avoid to improve RLS
This section will discuss various drugs and foods that may worsen RLS. Things that cause worsening of RLS in some patients may not bother others in the same way; in fact, others may even be helped by these same medications or foods that worsen others. Please free to email us with any foods or drugs that worsen your RLS problems. Keeping a diary or log of foods, medications taken and worsening of RLS may also be helpful to determine what might be affecting you.

Ice Cream
Some patients have found that ice cream (all flavors) cause worsening of RLS. Avoiding this food eliminates significant RLS worsening, especially in patients who eat a lot of ice cream. The cause of this relationship is unknown. For a possible explanation of why ice cream may exacerbate RLS, click here for a discussion of avoiding Mono and Diglycerides to help RLS.

Caffeine
Drugs and foods containing caffeine are very common. Coffee, tea, and colas are all commonly known beverages which contain significant amounts of caffeine and can cause worsening of RLS symptoms. Chocolate can also contains caffeine.

Many medications use caffeine in their formulation, especially pain pills, so you much check them out one by one. Some common medications with caffeine include: Cafergot, Darvon, Esgic, Exedrin, Fioricet, Fiorinal, Migralam, Norgesic, Wigraine, Anolaor, Butalbital, Femcet, Medigesic, Pacaps, Repan, and Synalgos-DC.

Antihistamines
These include the common allergy and cold remedies, most of which are available over the counter. Examples are Actifed, Benadryl, Chlortrimeton, Comtrex, Contact, Corcidin, Dimetapp, Drixoral, PediaCare, Sinutab, Tavist, TheraFlu, Triaminic, Tylenol (flu, cold, PM, allergy), Vicks. Note that many cough syrups may contain antihistamines, especially if they are recommended for cold or flu symptoms.

The newer, non-sedating antihistamines, Allegra, Zyrtec and Claritin are generally better (and some RLS patients can take these without problems), but can be just as bad as the over the counter medications.

Antidepressants
The tricyclic and serotonin uptake inhibitors (see Antidepressant Medication section above) can cause significant worsening of RLS problems. Paradoxically, some patients have noted marked improvement while on these medications, making it harder to understand why some patients worsen and others improve.

Antinauseants
Medications to treat nausea can worsen RLS symptoms. This class of drugs includes: Anitvert, Atarax, Benadryl, Bonine, Compazine, Phenergan, Thorazine, Tigan, Trilafon and Vistaril.

There is an antinausea medication only available in Canada and Mexico called Domperidone (available over the counter as Motilium 10 in Mexico) , which does not cause worsening of RLS symptoms. This can be obtained by Americans over the internet from Canadian pharmacies (example is canadameds.com or www.canadapharmacy.com) with a valid prescription from an American medical doctor.

Reglan (metoclopramide) is an anti-nausea agent that is also used to prevent reflux and has significant anti-dopamine activity, so it should be avoided.

There are two newer anti-nausea medications available in t he USA, Kytril (granisetron hydrochloride) and Zofran (ondansetron hydrochloride) which do not affect the dopamine system and thus should be safe for RLS. The only problem with these medications are that they are very expensive.

Cough syrups
Most OTC cough syrups are fine to use for RLS patients if they are just simple cough medications (like regular Robitussin which contains dextromethorphan and guaifenesin). When they are combination preparations (also good for colds, flu, etc.) they likely contain antihistamines which as noted above, worsens RLS. So, check the ingredients carefully before you buy any cough medication (OTC) as they may contain harmful ingredients.

The prescription cough syrups usually contain a narcotic (codeine or hydrocodone). The most common one prescribed is Phenergan with codeine, which contains the anti-nausea agent phenergan which usually worsens RLS. It is countered by the presence of a small dose of codeine, but this may not be enough to cover the RLS worsening effects of the phenergan. Tussionex is an example of the hydrocodone containing syrups. It is combined with chlorpheniramine, a potent RLS worsening antihistamine, but the hydrocodone is at a high dose of 10 mg which usually will overcome any worsening effects of the chlorpheniramine. Hycomine is similar to Tussionex but Hycotuss does not contain any RLS worsening medications so it may be a better choice.

Antipsychotic medications
Many of these drugs are similar chemically to the anti-nauseants (in fact many are used as anti-nauseants). They can worsen RLS just like the antinausea drugs. This class of drugs includes: Clozaril, Compazine, Haldol, Loxitane, Mellaril, Moban, Navane, Prolixin, Risperdal, Zyprexa, Serentil, Stelazine, Thorazine, and Trilafon. Also, lithium, a drug which is very helpful in the manic-depressive disorders, can worsen RLS.

Bladder Control drugs
We have gotten some case reports of worsening RLS with drugs such as Ditropan. These drugs should thus be used with caution in RLS sufferers.

Alcohol
Alcohol had been found by many RLS sufferers to cause worsening of their RLS. The amount that does this can be very small in some cases. Individual tolerance can vary considerably (many may not be bothered at all).

(7) Pregnancy and RLS
Pregnancy can cause a worsening of RLS (in at least 50% of patients who have RLS and become pregnant) or be the first time that a patient experiences RLS symptoms. It usually occurs in the third trimester and has been reported in up to 12% of all pregnancies. 10% of women will have their first experience with RLS during pregnancy. The RLS symptoms will usually go away after the pregnancy, then often come back later in life. Various problems such as iron or folate deficiency have been postulated as causes, but the real reason why RLS worsens with pregnancy is unknown.

If the symptoms are severe enough to warrant drug therapy, then the sedative category of medication has been used for treatment (with the approval of the patient's obstetrician). Many RLS specialists will prescribe the opioid category of medication during pregnancy, due to their safety in pregnancy.

The risk of RLS medication in pregnancy is as follows (Category A,B,C,D,X, where A is the best and X is the worst and should never be taken during pregnancy; Category A drugs are quite safe and have a proven track record in pregnancy, Category B drugs have limited data and experience and should be used only if clearly needed, Category C drugs generally have no adequate or well controlled studies in pregnant women and should be used only if the potential benefit justifies the potential risk to the fetus):

Pregnancy Risk Category
Drug Name

A
None

B
Pergolide (but limited data), Ambien, Percodan (short term use), Dostinex, Ambien, methadone (low dose), Percocet, Percodan, OxyContin

C
Mirapex, Requip, Sinemet, Ultram, Darvon (short term use), codeine (short term use), Vicodin or Lortab (for short term use), Sonata, Lunesta, Tegretol, Neurontin, Catapress

D
Xanax, Klonopin (and most benzodiazepine sedatives),
Darvon, codeine, Vicodin, Percodan, all for long term use, methadone (higher doses)

X
Restoril


Pregnant women should be checked for anemia and proper iron supplementation as indicated. Magnesium (used for treatment of toxemia of pregnancy) has recently been looked at for treating RLS, but this is only in the preliminary stages.

Nursing mothers can be treated with Darvocet (Darvon). Small levels of this drug will get into the breast milk, but no adverse effects have been noted in the infants getting the breast milk. Sedatives do get into the breast milk and can cause lethargy in the infants, so this class of medication should be avoided in nursing mothers. Dopamine agents may decrease lactation (milk production).

For more information on the risks of drugs in pregnancy or with breast feeding check out Motherisk Program or the Organization of Teratology.

(8) Quinine
This drug rarely (less than 5%) helps RLS and is only included on this page to help avoid RLS sufferers from receiving this drug for their disorder. It is probably one of the most common drugs prescribed by doctors unfamiliar with RLS when they hear the RLS complaints of their patients. This inappropriate treatment occurs because the RLS symptoms are confused with leg cramps for which quinine is the correct treatment.

We have received several reports from RLS sufferers that quinine has helped them, but we cannot be sure whether they have RLS and leg cramps, or in fact only leg cramps. I have treated several patients who definitely had RLS and found that quinine helped (sometimes very significantly) their RLS, but this is still a very small minority of RLS sufferers. As with many of the treatments above, some remedies seem to help only a few RLS patients and therefore cannot be recommended to the majority.

(9) Other RLS Information and Associations
Summer RLS
Many patients have found that there is a seasonal variation in their RLS. They do fairly well for most of the year, then start to have worsening of their RLS symptoms in the late spring or early summer. This generally will occur with a change in the weather to hotter and more humid. There is of course, no understanding of why this phenomenon occurs.

The treatment of this increased RLS in the summer is to increased the dose of current medication. If that does not suffice, then addition of other classes of medications may be necessary until the fall months.

Menstrual Cycle RLS
There is a subset of female RLS sufferers who find that their RLS symptoms wax and wane with their menstrual cycles. Generally the RLS will worsen before menstrual flow and abate several days after. This seems to follow the pattern of PMS. This association is not understood at all and brings up the question if RLS is associated or related to PMS or other hormonal conditions (such as RLS in pregnancy).

We have also seen changes during the onset of menopause and after menopause. This can vary quite a bit amongst female patients with RLS. Some RLS sufferers will have their RLS complaints get better with menopause, and some have even noted worsening if placed on estrogen replacement therapy.




--------------------------------------------------------------------------------

Amy
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Postby Amy » Tue Aug 26, 2008 6:05 pm

Mack and Ann,

THANK YOU!!! You guys are wonderful.

Baffledsilly
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Re: Young child with PLMD

Postby Baffledsilly » Thu Feb 23, 2012 8:42 pm

Wow, this bring back memories.
Sorry to hear your child is suffering from plmd. The way you describe him sounds exactly what I went through as a child. Life long aching legs attributed to a lot of my suffering to get to sleep, and once asleep woke up exhausted as expected with someone with this disease. The only advantage your child has is they are aware that children can be born with it and atleast can do a little more than they could 40 years ago. A loving and thoughtful family will get him through this until he old enough to battle this on his own. I wish you both luck and better days ahead, medicine gets better by the day. Don't lose hope, I haven't yet and never will.

Take care.

badnights
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Re: Young child with PLMD

Postby badnights » Sun Feb 26, 2012 5:32 am

The medication issue is impossible to address properly because almost no (no?) studies have been done with children, but it's worth mentioning that sleeping medications don't address the WED symptoms. In adults at least, from my personal experience and that of others, if the WED is not treated and you take a sleeping pill, the brain tries to sleep while the body is being forced to move and it's awful. Not sure if this is relevant to your son.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Baffledsilly
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Re: Young child with PLMD

Postby Baffledsilly » Mon Feb 27, 2012 7:22 pm

Badnights, yes you are right. My 2nd last doc gave me only Lorazepam for sleep after giving me too much levodopa and celexa that it put me in hospital. Just left me on Lorazepam for sleep and thew his hands up in the air. Could tell by the way he acted he didn't care much about the effects of WED on his patients. We were basically whiners who needed to shut up and put up. That's why I'm not letting my government give up on kids with this disease. It is horrible enough as an adult but to a kid this is sometimes unbearable to suffer through and even harder to understand. More studies are needed indeed, and a fresh slate to think with when it comes to kids and this disease.
Last edited by Baffledsilly on Tue Mar 13, 2012 6:30 am, edited 1 time in total.

badnights
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Re: Young child with PLMD

Postby badnights » Sun Mar 04, 2012 3:27 am

you're absolutely right, baffledsilly. I cringe to think of all the misdiagnoses children wiht WED must suffer through - and I admit I cringed when you told of your doctor throwing up his hands, and how it seemed he didn't care how WED affects our lives. why is it so bleeping hard for some people to understand? It's not just the chronic lack of sleep, which is a serious health concern on its own, it's also being tortured the whole time too! To me it seems easy to understand but I guess that might only be because I have it ! :lol:

How do you plan to make the gov't aware of the plight of children with this disease? That would be wonderful.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

rthom
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Re: Young child with PLMD

Postby rthom » Sun Mar 04, 2012 3:47 am

:roll: Beth I too am working on the government but through a local angle. The concept of having it as a child and knowing that no- one seems to really understand or care is appalling to me, so I made arrangements to have a set of articles written in the local paper for a month, to be written by a local politician. It took some convincing but it sure is time to try! I'm just waiting on the group thing to get ironed out so there is someone for folks to contact.
My wife and I have been having frequent conversations about the lack of concern from the healthcare providers, trying to make a game plan for us both to follow so things go as well as can be. It's nuts that we have to gang up on the dr's to convince them that a few min a night is not ok and nneeeeeddss to be addressed. Do they think we are complainers or just liars when we say we need sleep and that we are only getting 10-20 min a night and can't take it? And how the H... is counselling supposed to help? Sleep is the cure not talk.
We have decided to follow a pattern of mine and both go bug the dr until it happens--politely of course, so as to not p. off the dr.


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