Opinion needed HELP!

[melanie]

Dannys complaining of all kinds of noise in his head.He says its all jumbling together.Hes not taking any meds except for klonipin "when needed" which I think is always hes full of anxiety. He had a great wweekend but today was the family thing and he was pissy not as bad as before but I see some stuff and he says its all the noise in his head.I feel like theres something I should be able to do but I dont know what.WIll antibiotics help with chatter in the head??? HELP PLEASE

 

 

 

Melanie

[sf_mom]

How much does he weigh and what is current dose? Higher dose has helped us in the past. Maybe up and ask in 48 hours to see if he is feeling better.

 

Dannys complaining of all kinds of noise in his head.He says its all jumbling together.Hes not taking any meds except for klonipin "when needed" which I think is always hes full of anxiety. He had a great wweekend but today was the family thing and he was pissy not as bad as before but I see some stuff and he says its all the noise in his head.I feel like theres something I should be able to do but I dont know what.WIll antibiotics help with chatter in the head??? HELP PLEASE

 

 

 

Melanie

[MomWithOCDSon]

Is clonopin the same as clonansepam? We had used clonansepam at points during our DS' heaviest anxiety periods, and it did seem to help considerably. Our DS also has disorienting "chatter" in his head at points of high anxiety, like at homework time or when he's called upon to make a quick decision.

 

Upping the abx, if this is PANDAS behaviors, should help as well.

 

I will also say that we have used Valerian Root to considerable success with what we call "residual anxiety," despite abx treatment. On days when he's feeling a little edgy before going out the door to school, for instance (transitions remain the most anxiety-producing times for him), he'll take a Valerian right before we leave. Maybe some of it is psychosymatic, but it does seem to help.

[peglem]

Is clonopin the same as clonansepam? We had used clonansepam at points during our DS' heaviest anxiety periods, and it did seem to help considerably. Our DS also has disorienting "chatter" in his head at points of high anxiety, like at homework time or when he's called upon to make a quick decision.

 

Upping the abx, if this is PANDAS behaviors, should help as well.

 

I will also say that we have used Valerian Root to considerable success with what we call "residual anxiety," despite abx treatment. On days when he's feeling a little edgy before going out the door to school, for instance (transitions remain the most anxiety-producing times for him), he'll take a Valerian right before we leave. Maybe some of it is psychosymatic, but it does seem to help.

Love valerian root! I don't think its psychosomatic for Allie, because she doesn't know what that pill is or what its for. Poor kid- every time I come to her with a pill, she just opens her mouth and swallows it! Careful using benzos and valerian together, though- both work on the same system.

[Chemar]

Melanie, please do be careful about altering the dose on a prescribed antibiotic without first consulting with the prescribing doctor!

 

as much as others here want to be helpful, it really is not a good idea to alter the dose of a prescribed medication based on internet advice. You need to first check with the doctor to be sure it is ok to do so, especially as Danny is also on other medication!

[melanie]

Of course ,Klonipin is clonazepam he is 140lbs and takes .25mg in the am and can take it if were going to go somewhere at night where I think he may need it.I did try the valerian but He hates it I think it must taste bad .He like ALLie he will swallow anything but dosent like the vallerian root pill.

 

Hes only taking 250 mg zith in the pm but he also is on 1g IVIG every 21 days.He didnt want to go to school today again so he went to work with his father.Last night before bed he said why was I born with autism and pandas? My brain keeps telling me to say things and I dont want to .It tells me to curse and tells me that your lying to me. Now I think hes got some other illness. I cried myself to sleep and I think i heard my husband sobbing too.

 

Melanie

[colleenrn]

Melanie,

 

Check with your physician first, but for Danny's weight, 250mg is not a big dose and he could take 500mg of Zithromax per day, even if just for a few weeks. IMO, upping the Zithromax is safer than upping the Klonopin.

 

I agree it is not always safe to follow "Internet advice", however you are consulting with parents who live and breathe PANDAS everyday and unfortunately have far greater knowledge in treating it than most physicians practicing right now.

 

Colleen

[smartyjones]

I will also say that we have used Valerian Root to considerable success with what we call "residual anxiety," despite abx treatment. On days when he's feeling a little edgy before going out the door to school, for instance (transitions remain the most anxiety-producing times for him), he'll take a Valerian right before we leave. Maybe some of it is psychosymatic, but it does seem to help.

 

 

mom - do you also use ibuprofen? or do you use the valerian like others of us use motrin? valerian is an herb, yes? what form does it come in?

thanks.

Edited May 3, 2010 by smartyjones

[tpotter]

Both my DS have had that chatter, and upping the abx has helped them both at those times.

[MomWithOCDSon]

I will also say that we have used Valerian Root to considerable success with what we call "residual anxiety," despite abx treatment. On days when he's feeling a little edgy before going out the door to school, for instance (transitions remain the most anxiety-producing times for him), he'll take a Valerian right before we leave. Maybe some of it is psychosymatic, but it does seem to help.

 

 

mom - do you also use ibuprofen? or do you use the valerian like others of us use motrin? valerian is an herb, yes? what form does it come in?

thanks.

Yes, valerian is an herb, and the dried form of it is put into gel caps and sold at health food stores and places like The Vitamin Shoppe. It has a pretty strong smell, so we tend to open the bottle quickly, pop the capsule out, and hold it in an enclosed fist until DS is all set to pop it in and swallow it with a glass of water. I suspect it would taste bad, were he to crush the gel cap and get a lick of the actual herb on his palate. But, for the most part, is just smells strongly herbal.

 

We don't use it in place of Motrin or Ibuprofen; I'm not sure, but I don't think Valerian has any anti-inflammatory properties. What it does have is "calming" properties, so if he's "edgy" or something sets him off right before it is time to go somewhere . . . school, the doctor's office, etc. . . . we find that taking a single Valerian capsule can help take that "edge" off.

[sf_mom]

I agree whole heartedly with everything Colleen has said in her post. Our son is 47 pounds and on 500 m.g. Azithromycin per day as well as many others similar in weight and dose not posting to forum....

 

Our son post his second IVIG had repeating thoughts and symptom resolved post 3 IVIG.

 

 

 

 

Melanie,

 

Check with your physician first, but for Danny's weight, 250mg is not a big dose and he could take 500mg of Zithromax per day, even if just for a few weeks. IMO, upping the Zithromax is safer than upping the Klonopin.

 

I agree it is not always safe to follow "Internet advice", however you are consulting with parents who live and breathe PANDAS everyday and unfortunately have far greater knowledge in treating it than most physicians practicing right now.

 

Colleen

Edited May 3, 2010 by SF Mom

[Chemar]

I agree it is not always safe to follow "Internet advice", however you are consulting with parents who live and breathe PANDAS everyday and unfortunately have far greater knowledge in treating it than most physicians practicing right now.

 

Colleen

 

Hi Colleen

I have no doubt that most of you know far more than most physicians will ever know about PANDAS, but that does not remove the serious liability issues involved in advising someone to alter their prescribed medication dose, especially when a child is on more than one medication, and may have other issues than PANDAS in the mix

 

My caution is not meant to denigrate the expertise PANDAS parents have with this illness, but to remind us all of that fine line in sharing our own experiences and the serious liability problems of "dispensing medical advice".

[Sheila]

Hi Melanie--

 

I saw Chemar's post and agree that there's a line between members sharing what helped, and giving someone direct advice on changing prescription medication doses, whether less or more. As we all know, there's so many factors that have to be considered in complicated medical cases. I know everyone has only the best intent.

 

Also, I'd like to suggest (as I do in most cases ) that you look back and consider anything that might have triggered a reaction. Brain inflammation resulting in an increase in symptoms of OCD, ADHD, tics, anxiety, mood swings, etc can be caused by many things beyond a bacterial or viral infection. For example, if I read it correctly, Danny had a birthday party a few days ago (30th). Using this line of reasoning, you and your husband could think back and recollect if he ate anything that he might have reacted to (artificial flavors, colors, sugars, etc or other foods he could be sensitive to); was he exposed to fragrances or other agents that might have had aggravating chemicals in them? outdoor allergens that have come into bloom or pets he's not usually around? swimming in a chlorinated pool?

 

These are just random ideas, I'm not suggesting they are issues for Danny as I don't know anything about your family's history of allergy or chemical sensitivity, but a general comment is that as parents it's always good to be looking for possible triggering events, as these can make any underlying infection worse.

 

So just throwing those ideas out, and hoping things get better through the week! Sheila