Anxiety runs our life......

[ilovedogs]

I'm so tired of my 9 year old son's anxiety! I try to be understanding and I coach him through it but it totally runs every aspect of our lives. I can't even run to the store and leave him home with dad w/o him getting anxious over my return. He hates children's church and cries at the end if I don't pick him up on time(his own time frame, mind you), etc. He has anxiety over his football games and has been throwing up before the games. Once he gets to the field, though, he's fine! He has travel anxiety and he constantly needs to know what we're doing and for how long and what comes next. It's driving me crazy!

Most of this has been going on for years(except for the sports stuff, that's new). Hence, me being tired of it!

We have him in counseling but he has a hard time applying logic when his anxious brain takes over. He is on B6, magnesium, glycine, and a Neuroscience product that has helped with the OCD. I just want this anxiety to go away. Of course, when the anxiety picks up, so do the tics. I feel like I'm fighting a losing battle! I just want to be able to go to tennis class without him or to get my hair done, etc. But, I know that he'll drive my dh crazy with his crying and my dh does not have patience for irrational behavior. So, I end up taking him everywhere with me and I can't break the cycle. So, I know I contribute to the problem but I don't know how to improve it. I keep thinking that things may get better with age, but I'm not so sure anymore. Funny thing is: he can go sleep over at friend's houses and go to the amusement park and pizza places with those families and has no problem. He can go play golf or tennis with dad and he doesn't worry about me then soooooo, I'm so confused!!! Any advice??? Anyone else going through this or have been through this?

Thanks,

B

[EAMom]

Wow, your son really sounds like her is suffering ...and you too!

 

I think a doing steroid burst on your son would be interesting...perhaps that might help sort out how much of the anxiety is from PANDAS? My dd became very anxious when her pandas was active.

 

Indigo commented how her child is so much better on the steroid burst...now she can see how much of abnormal behavior was PANDAS. (In this case defiance, not necessarily anxiety.) Of course you can't use the steroids long term...but it might help sort some things out.

 

Also, I know everyone *hates* the "SSRI" word, but that did help my dd. My dd is doing great on a *low* dose of prozac (but her PANDAS is not currently active). It seems to be helping her pre-PANDAS social anxiety (pretty friendly towards kids, shy towards adults, a worrier). During PANDAS it did help dampen the some of the more extreme aspects aspects of her OCD, anorexia nervosa. Of course you need to be very careful with SSRI's (black box warning) ...my dd ended up having a bad reaction (akathesia, serotinin syndrome) to lexapro (1st ssri she was on)...it was a bit hard to sort out what behaviors were from the PANDAS and what was from the Lexapro. Originally we wanted to take her off of ssri's altogether (in may) when things were really bad with the PANDAS and serotonin syndrome, unfortunately, when we stopped the lexapro her anorexia nervosa came back in full force (2 pieces bread/24 hour period), to the point where the eating disorder docs wanted to rehopsitalize her. So, we tried to prozac to help the ocd/eating and since she is doing well at this point we really don't want to change that. I get the sense that her brain was a bit serotonin deficient to start with, which is why she is doing well on it. She is still very much "herself" but less anxious. I think she is getting more out of school/life with a bit more serotonin in her brain! Anyway, that's just my personal experience with SSRI's in my child for what it's worth.

 

Another parent once told me that the PANDAS takes whatever is the child's weak spot (mild anxiety, for example) and really amplifies it. I would agree with that. For example, dd had mild sensory defensiveness b-4 pandas (sometimes sensitve to tags in shirts etc, but nothing incapacitating) and with the PANDAS her sensory defensivenes became extreme. My dd's mild social anxiety, also got much much worse with her PANDAS.

 

I also would like to add that cognitive behavioral therapy didn't do much for my dd's anxiety/ocd when she had her PANDAS episode...i think the changes (inflammation) in her brain/basil ganglia were just too much for her to fight that way. But, I know CBT helps some.

 

Anyway, if it is PANDAS per the steroid burst then maybe a call to Dr. K. would be the way to go?

 

Re the anxiety being better during golf with dad...my dd's ocd/anxiety was better (during pandas) when she was with 1 best friend...maybe a similar kind of thing?

[CSP]

Hi Bonnie,

 

I really did want to encourage you about this being something he will get better with age. Remember the chat we had about my oldest (does not have ts) she is so happy and independent. She was realy bad with the throwing up before school and driving my husband and I crazy when she would scream through the house looking for us when all we did was walk to the end of the drive to get the mail.

 

Now Ds (with ts) was not as bad as her but slowly started to outgrow his fears. I think when your son wants to do more things on his own he will not behave like this anymore.

 

I had to do a lot with him, first go to the store by himself to pick me up something. Then it was to use the self checkout. Now he uses the comp. to look up foods that he does not know where they are. Then it was to be a big brother and take his younger sis to the lib. He even went to the bank this summer to cash in his rolled coins and brake large bills all by himself. He fussed but after doing it he does it now all by himself. Last summer we made him walk to Subway with a friend. First they brought the food home and ate in our backyard until they both ate at Subway, now he is very comfortable to eat out with friends. Walks to the high school, and I even drop him off at the ortho. to have his teeth worked on without me. If he has picked at his braces and pulled the wire out I make him call the office to make the appt. He does a great job while on the phone, but has to work up to it. All these little things have really helped him to become an independent young man. Now I'm the one who is telling him to be careful and I get, "OH MOM."

 

So I really think he will get over this, it will take some time, but it will happen.

 

 

 

CP

[Chemar]

I think a doing steroid burst on your son would be interesting...perhaps that might help sort out how much of the anxiety is from PANDAS? My dd became very anxious when her pandas was active.

 

Bonnie PLEASE be very cautious about any steroid burst!

 

forgive me for not always remembering whose kids have what dx but IF your son has Tourette Syndrome then steroids will make the tics far far worse!

 

I know the steroid burst can help kids with auto-immune illness greatly BUT one has to balance treatment with diagnosis.

 

when my son was first dx Crohn's they wanted to start steroid treatment immediately until I was able to convince the specialist to please go research steroids and TS. Once he had done that he realized why I was emphatic that it would not be a good treatment option for my son

 

after my hubby's car accident some months back, the ortho insisted on a steroid burst as he was in extreme pain from all the inflammation. I tried to explain re the TS that he also has and had rather rude and authoritarian response from the doc and hubby was so desperate for pain relief he decided to try it.

 

I can only tell you it had horrible effects and he is now ticcing more than he has in YEARS and it has also messed up other stuff for him. it has also interfered with his cognitive functioning pretty seriously.

 

again, I know that steroid burst can be beneficial for kids with PANDAS but if there is TS associated please think carefully and do research before going near this!

 

I do want to stress again that it needs to be remembered that this board is represented by people dealing with very many and varied diagnoses and what works for some may actually be dangerous for others. We need to be VERY careful before suggesting treatments to others!

[ilovedogs]

Hi Chemar,

I think my ds is closer to a TS diagnosis than Panda's and I was not really thinking of going the steroid burst with him anyway. We have started with a new naturopath so we'll see what he has to say when we see him in a few weeks.

 

CSP: thanks for the support! I know I need to be patient but I also know that OCD is lurking somewhere in my ds's mind and I wait and wonder how bad things are going to get. I guess I need to start thinking: how good can things get? I'm just frustrated lately b/c I feel like my almost 10 year old should be a bit more independent and I wonder if we'll ever be able to live a normal life without tics and anxiety? It can be disheartening sometimes.

[EAMom]

I'm sorry, I didn't mean to imply that you would do a steroid burst without consulting with someone like Dr. K. I got the impression he does the steroid burst on (many, most?) possible pandas (tourettes, tics, ocd, anxiety) patients before ivig, as a confirming "test" for pandas.

 

Also, I from reading some of your previous posts I got the impression your son's tics may have been started (or worsened) with strep...that there were some PANDAS features there. I wouldn't suggest the steroid burst if it was strictly non-pandas tourettes. Also, IMO it's sometimes hard to know if strep is the cause since many children have strep with no obvious symptoms (or are carriers), unless the parent is vigilant about throat cultures (and even those aren't foolproof.)

 

Also, I did not realize that a short term dose of steroids (a few days, which I think the burst is) could cause permanent worsening of non-pandas tourettes?

 

I wasn't suggesting steroids as a long term treatment...just short term to see if IVIG would be something to consider. (Since those possible pandas sufferers that respond to steroid burst are likely to respond to ivig.)

[Chemar]

Also, I did not realize that a short term dose of steroids (a few days, which I think the burst is) could cause permanent worsening of non-pandas tourettes?

 

I wasn't suggesting steroids as a long term treatment...just short term to see if IVIG would be something to consider. (Since those possible pandas sufferers that respond to steroid burst are likely to respond to ivig.)

 

My husband, who does have genetic TS, began severe ticcing by day 2 of a 5 day steroid burst treatment. By day 3 he was so severely impaired with intense tics that were affecting his entire body that he needed emergency treatment and had to be rapidly withdrawn instead of complete the taper normally required with a steroid burst.

 

he has suffered serious and seeming permanent impairment as it is now months since the burst and his tics are far worse than they were even at their worst in childhood (having had many years of just a slight facial grimace and throat clearing)

what troubles him most is the cognitive impairment that resulted.

[Caryn]

Wow, Cheri--

 

My husband, who does have genetic TS, began severe ticcing by day 2 of a 5 day steroid burst treatment. By day 3 he was so severely impaired with intense tics that were affecting his entire body that he needed emergency treatment and had to be rapidly withdrawn instead of complete the taper normally required with a steroid burst.

 

This really is something to think about. Has there ever been any scientific study about it, or is it just anecdotal info? If a steroid burst is so controversial folks should be aware of the possible negative results if they have a mis-diagnosed child receive treatment. I wonder what percent of folks with tics are thought to be PANDAS and what percent are thought to have T.S. or milder, T.S. related tics w/o the verbals. Has anyone done a study about that? Perhaps Sheila Rogers would know? I think this kind of information would be helpful for folks with an ambiguous diagnosis that they want to treat aggressively.

 

Thanks for sharing--

Caryn

[patty]

Chemar,

 

Can you explain why steriod can spike tics or TS tics? I thought steriod is anti-inflammatory and not a stimulant.

 

My son recently had an asthma attack and used albuterol because i was not sure of the side effect of steriod use. Your explanation would be very helpful.

 

Thx!

 

Pat

[CSP]

Hi Bonnie,

 

The one thing I have seen in both my kids was it was a timing that both seem to hit at around 13. I remember thinking the same as you when both were 12. My husband and I would say for our DD she would never get a drivers lic. He would joke and tell her he would tell any boy who came to pick her up for a date to, "RUN BOY RUN!!"

 

This was before our son had his explosion with ts so we were clueless, and just thought she was being silly the way she was acting. I know my husband would blame me and told me I coddled them to much and that is what caused them to be scared. Now we know better.

 

Hang in there this will get better.

 

CP

[ilovedogs]

Hi Bonnie,

 

The one thing I have seen in both my kids was it was a timing that both seem to hit at around 13. I remember thinking the same as you when both were 12. My husband and I would say for our DD she would never get a drivers lic. He would joke and tell her he would tell any boy who came to pick her up for a date to, "RUN BOY RUN!!"

 

This was before our son had his explosion with ts so we were clueless, and just thought she was being silly the way she was acting. I know my husband would blame me and told me I coddled them to much and that is what caused them to be scared. Now we know better.

 

Hang in there this will get better.

 

CP

So, I have 3 more years to go???? Sigh, well we'll see! I know my dh says the same thing about me. It's hard not to coddle them a bit when you know they're already prone to be anxious. Sometimes I don't know when to push him a bit or when to back off, KWIM? Anyway, my mom is coming out in late October and dh and I are going on vacation together so I'm praying he'll be OK with it!

 

B

[Chemar]

Chemar,

 

Can you explain why steriod can spike tics or TS tics? I thought steriod is anti-inflammatory and not a stimulant.

 

My son recently had an asthma attack and used albuterol because i was not sure of the side effect of steriod use. Your explanation would be very helpful.

 

Thx!

 

Pat

 

hi Patty

 

I have no info on whether steroids can or do spike tics OTHER THAN TS tics, and so that is why I was real careful to stress in both my above posts that I was referring to TOURETTE TICS

 

we were told of the negative effect of steroids on TS by a physician many years ago when my son was going thru puberty peak and tics in mega wax mode

He also explained it is thought this is why more boys than girls seem to exhibit TS

 

then when my son was dx with Crohn's and they wanted to treat with steroids I asked the GIT specialist to please check as I was concerned re the negative connection i had been told of before. He did and he confirmed it would be far too risky to use steroids to help the crohn's auto-immune inflammation when the downside could be a spike in TS tics

 

an easily understood explanation is found in this article on the chemistry of TS. scroll down till you get to androgens and cortisol

http://au.geocities.com/jones_kacm/chem.htm

[Calicat]

Chemar,

So sorry to hear that your husband had to go through that. I bet that doctor felt bad afterwards and wished he/she had listened to you!!

[lurker]

Patty,

 

The steroid bursts are oral and enter the bloodstream; so they are systemic. Albuterol is inhaled; so it is delivered directly to where it is needed. Also, it must be much lower in dosage, as oral prednisone has to be tapered and Albuterol is used sporadically.

[Caryn]

Wow, Cheri,

Thanks for the link. I remember reading it a long time ago-- you must have linked it before. I had forgotten the info it contained and really enjoyed the refresher. We started using Tryptophan again after the eye blinking fiasco this fall and found it to be a great symptom reliever. We originally tried it after our Dan doc suggested it as one of several options for reducing tics. We eventually went with GABA instead. I just want to note that tryptophan is known to suppress appetite and we did see some of that. We compensated by giving it after a very big breakfast and then offering our ds his favorite 'can't resist' foods for lunch, and feeding him dinner when he came home from school at 3 p.m.

Caryn