Unusual questions....

[Sunshine]

I have a 7 year old boy with PANDAS. He is not on any antibiotics, but he is on a variety of supplements. I have noticed a few odd things, which I'm wondering if anyone has insight into.

 

* His colour fluctuates from very pale to very rosy. It can change several times in a day, or it can remain constant for days (either pale or rosy). He has been tested for allergies, and we are concientious about avoiding allergens. Why would his colour fluctuate??

 

* We give him epsom salt baths every now and then. We have been doing this for over a year. For the past 6 months, we notice that he gets very itchy in the bath. We use 2 cups in a full tub. Why does he get so itchy??

 

* He has little bumps on his cheeks that come and go. Any ideas??

 

He is due to have his adenoids removed in a month. We are deliberating if we should proceed or not.

 

** Has anyone's child had an increase in symptoms after anaesthetic??

** Should he stop supplements before surgery for a few weeks??

 

Any thoughts on these questions would be greatly appreciated!!

[kim]

Sunshine,

 

About the bumps, my oldest son has had a red rashy bumpy area on his face (lower cheek extending down toward jaw bone) on and off. The Ped told me once, that it was a keratin rash. He also had red bumpy thighs that look rashy. He said that was sensitivity to laundry detergent, and to do a double rinse cycle. I think it was probably the same thing.

 

http://en.wikipedia.org/wiki/Keratosis_pilaris

 

Keratosis pilaris occurs as excess keratin, a natural protein in the skin, accumulates within the hair follicles

There are several different types of keratosis pilaris, including keratosis pilaris rubra (red, inflamed bumps), alba (rough, bumpy skin with no irritation), rubra faceii (reddish rash on the cheeks) and related disorders.,

 

My youngest son, also turned orange, orange, orange, right around 1 yr. to 15 months. This was about the same time he quite eating normally. I have read that beta carotene is converted to vitamin A in the intestine. What's not converted is stored in the skin. I wonder, if he was converting any? The inability to convert beta carotene to vit A, is something I have ran across a few times. I wonder if the two are related. This Keratosis thing, looks pretty common though.

 

The thing that popped to mind about the color (rosey) change was niacin. If he is taking niacin in his supplements, I wonder if it could be causing a "niacin flush?" Orthomolecular, posted some info on that, a while back. Maybe you could use the search feature and see if you can find it?

 

Itchy in tub; is the any mold or mildew anywhere in the area? Tracks on shower doors, curtain, etc? Bathrooms are so notorious for it. I'm sure you have already thought of soaps or shampoo's, but even something that has been used in the past can pop up as an irritant.

[Chemar]

Sunshine

 

the flushing and the rash IMHO are more likely due to the fact tht he has strep in his system than anything else.

 

without antibiotics (eg azithromycin) to kill the strep, his body is continuously having to mount an attack on it and so I would think his immune system etc is in overdrive

 

Does he ever run fevers with the rash? when kids are PANDAS positive and not being treated for it with correct antibiotics, one does have to be on the lookout too for Scarlet fever, a rash caused by the toxins that are excreted by streptococcus bacteria

 

Itchy skin can also be a result of toxins within, which the epsom salts is bringing out

 

you could try reducing the epsom salts to 1 cup and see if he still itches, or let him take a quick shower after the bath

[Dedee]

There are times when my son also tends to look extremly pale. It is usually associated with other symptoms such as poor sleeping, increased anxiety, and other PANDAS related issues. After his surgery to remove his tonsils and adnoids he looked like a ghost for months. The doctor assured me that it wasn't anemia from blood loss, but I changed his multi to one with extra iron for a month or two. My family was so worried they wanted me to take him to a hematologist, I'm talking very pale. But all the labs showed his blood counts to be normal. It was strange but did resolve after a few months and now he looks healthy again.

 

If you have your son on allot of supplements, you should talk with your doctor about this several weeks before the surgery. Some supplements can affect the bloods clotting time and cause excessive bleeding if not stopped ahead of time. Your doctor can tell you the appropriate time to stop them before surgery. Good Luck, hope your son does well.

 

Dedee

[Sunshine]

Thank you all for your replies!

 

Chemar, I agree that my little guy is eliminating toxins in the bath, but I'm wondering what. He has been on Threelac for 8 months, and has eaten mostly organic food for a year. I'm just wondering what the toxins are from? Our house is very dry, and the bathroom isn't moldy. We do, however live in a damp climate.

 

DeeDee, I too am convinced that his paleness is due to PANDAS. His blood work is also normal. It's not a flush that he gets, it's just that he can go from normal to pale without cause. Chemar, I agree that his body is in overdrive fighting the strep. I do believe that this is the cause. I wonder how many other PANDAS kids have the symptom of paleness.

 

DeeDee, did you notice an improvement in your child after surgery?? I'm worried to hear that your child was pale for a few months, as I don't want to cause more upheaval in my son's system. He seems to be fighting PANDAS, and his ND believes that his body will be able to resolve it. We can't get a DR to condone long term antibiotics. My son's symptoms are quite minor (sniffling and throat clearing that the ENT believes are related to the adenoids).

 

My son doesn't run fevers. He is no longer a carrier of strep (neg. throat culture after a round of Clyndamyacin).

 

Kim, thanks for the notes on the bumps. My little guy's bumps are neither red nor itchy. They come and go without cause. Perhaps it's part of the strep. We do have Vitamin A drops, but haven't used them as he reacts so stongly to immune boosting.

 

Has anyone tried adaptogen??

 

Thanks everyone,

Sunshine

[Chemar]

Sunshine

 

as i mentioned in my previous post, it is my opinion that the toxins are from the untreated STREPTOCOCCUS bacteria in his system

 

i also feel the rash and flushing are related to these same toxins

[Dedee]

Sunshine,

To answer your question, yes we saw a huge difference in my son after surgery. Of course it took a couple of weeks to recover from the pain, but he has been a completely different child. The surgeon said that his tonsils and adnoids where huge and we were definately right to get them out. I wouldn't worry much about the paleness after surgery. It did not bother my son much, just me. I am sure it has something to do with his immune system not functioning at it's best. I wish I had been more prepared at the time and could have given him supplements ahead of time to stregthen his immune system prior to the surgery. Oh well, live and learn. We have also struggled to find someone to give us long term antibiotics. When my son is not on antiobiotics his tics come back in full force. My understanding is that just because he doesn't have strept in the tonsil or adnoid area, the PANDAS patient can still have strept in other areas of the body or be reacting to the strept titers which remain elevated. Studies have shown that some PANDAS patients will have a decrease in neuropsychiatric symptoms in response to antibiotic therapy even though the strept cultures are negative. This is a mystery to all of the medical community and is why most physicians are hesitant to write long term perscriptions. It is the old belief that we can only treat if there is a positive culture. PANDAS is very new to the medical arena and it's treatment is still very contraversial. You will find a new opinion in almost every doctor you consult. We are planning to see Dr. Murphy at the Shands Clinic in the next few months. I am tired of consulting with "semi-experts" and getting confusing information. I think I'll just wait and go straight to the source.

 

I hope everything goes well for your son. I was wondering what supplements you have him on. Sounds like you have done a good job getting them adjusted to his needs. Good luck with the surgery should you decide to move forward.

 

Dedee

[faith]

Sunshine,

Is there any possibility it could be the beginnings of exema? My son had a friend and his younger brother today, and the brother had pink little spots around his face. I saw him scratching his head and cheeks. I mentioned it the the mother and she said he gets exema. This child was also very pale skinned and had pink shiners under his eyes. And when they were busy running around and playing hard the pink marks or blotches were more apparent and that's when I saw him scratch. Look up Healthy-Skin-Guide.com. (sorry I don't know how to copy links yet).

 

My son also scratched and said he felt itchy sometimes during the epsom baths, but it was no big deal. Maybe its just from all the hot soaking and the salts could make the skin a little dry?

 

Faith

[faith]

Sunshine,

Is there any possibility it could be the beginnings of exema? My son had a friend and his younger brother over today, and the brother had pink little spots around his face. I saw him scratching his head and cheeks. I mentioned it to the mother and she said he gets exema. This child was also very pale skinned and had pink shiners under his eyes. And when they were busy running around and playing hard the pink marks or blotches were more apparent and that's when I saw him scratch. Look up Healthy-Skin-Guide.com. (sorry I don't know how to copy links yet).

 

My son also scratched and said he felt itchy sometimes during the epsom baths, but it was no big deal. Maybe its just from all the hot soaking and the salts could make the skin a little dry?

 

Faith

[Sunshine]

Thanks for the replies.

 

Chemar, I do agree that my son's issues are rooted in an unresolved case of PANDAS. We are treating it, and he has come a LONG way. We have chosen to treat the strep naturally thus far. Many of the things that we are doing have resulted in significantly fewer symptoms. Strep can be treated naturally; in fact the body often fights if off before symptoms become apparent. Therefore, we are trying to encourage our son's body to fight the bacteria on its own. We may, however, have to resort to antibiotics at some point in time as part of our treatment protocol.

 

DeeDee, I so agree with you that PANDAS is still a mystery to doctors. Certainly we have heard the gamut of responses. Unfortunately we live in Canada, far from the source of experts. That is why this board is especially helpful to me.

 

Faith, exema is a possibility. He has bumps on the face and upper arms, common places for exema. I have read that the skin is a reflection of one's digestive system. I'm sure that my son still struggles with his digestive system, despite the use of enzymes.

[Chemar]

Sunshine

I absolutely agree that strep and all kinds of microbes can be treated naturally, with natural antimicrobials like monolaurin, olive leaf extract, garlic, honey and others, including some homeopathic remedies, and also by working to strengthen the immune system

 

My concern is that when there is stealth strep of a level as to result in PANDAS and when the toxins that strep produces are possibly manifesting as rashes etc....that the natural methods may need a booster from an antibiotic

 

As all regulars here know....I am pretty anti-pharmaceuticals myself ...both because of what prescription meds for Tourettes and OCD did to my son, but also because I feel more often than not all they do is mask the symptoms rather than cure the illness.

 

In the case of PANDAS, although I personally have no experience with it, other than having had it ruled out by Dr Murphy at Shands Clinic when my son first began manifesting his tics and OCD etc, yet from what I have learned on this and other boards, and from my own reading, a correct antibiotic protocol seems to really be important in moving forward on the path to healing

 

that does not eliminate the need for the natural treatments....quite the contrary, they are needed all the more because we know that where antibiotics can kill microbes, they also kill off the good stuff and so even more diligence in probiotic and immuno-boosting is needed

 

anyway, please dont think I am in any way being critical of your decisions on how you wish to treat your child....I applaud you for being "in charge" of his treatment

 

it was just that you had asked questions that I have encountered before with a PANDAS parent and their child did have secondary Scarlet Fever as a result of the toxic output from the strep and antibiotics were the only thing that resolved that for them

 

I was just trying to share that experience with you in case that is what your son is showing, and always do try to emphasize that I am speaking only from my opinion (IMHO) rather than as an "expert" on the subject

 

[Cum Passus]

Just Curious..... My son's ASO titer was tested less then 6, and his Anti Dnase B was less then 60. Does this mean strep has never been present?

 

C.P.