getting lost and not sure where to go

[fiveam]

I'm new to the world of OCD/PANDAS. I *think* my son has PANDAS but I feel as if I'm getting further and further away from answers. We had an appt w/Dr. Latimer today but she canceled it. It has been rescheduled for next week. My son has many symptoms that are listed for PANDAS but right now my biggest concern is his weight. We went to a Ped. GI doc last week and she said he had severe constipation and she sent us home w/directions for fleet enemas and miralax. Well, I agree he probably does suffer from constipation, it seems to cycle from diarrhea to constipation and I think he's in the "regular" part of the cycle right now. So all the enemas did was to give him the worst panic attack he has ever had and running diarrhea. On top of that when we went for the appt he picked up the flu and we are all flat on our faces now We also had a CBC and other blood work done as my son has in the past been hospitalized for nutritional deficiences. He weighed 40lbs last thurs, I'm sure he below 40 now. He has a BMI of 13.5.

 

The CBC test showed low nutraphils and high lymph, His MCH (whatever this is) was low. His basophils were on the low end but only just w/in the range. His BUN/creatinine level was high but I understand that underweight children frequently have this. Can anyone tell me what these numbers mean if anything?

 

I don't know who to contact. Am I overreacting? Maybe the bloodwork is fine. I've started adding neocate jr to my son's "smoothie"....he hasn't detected it but that's probably because he has the flu and can't smell anything....how ironic...the flu is a blessing!

 

I've contacted Drs around us (Ashburn VA), in MD and VA but no one wants to deal w/us. They always just give me other numbers for other specialists and those turn out to be useless. It seems as though he's too old for feeding clinics but too young for feeding disorders clinics (mostly dealing w/preteen/teen girls).

 

Has anyone heard of art therapy working for feeding disorders? I feel that nothing will work until my son is "disarmed" and relaxed if this makes sense.

 

I am drowning.

[sf_mom]

How old is your son?

 

I know Dr. K has helped many children that were under weight or struggling with eating disorder. He even told me a story of a little boy who had a feeding tube in and when he eventually got better he administering his daily antibiotic through tube because he didn't like the taste of the medication. AND, yes the tube was eventually removed.

 

Could you consult with Dr. K via phone to give you some guidance?

 

-Wendy

[KeithandElizabeth]

I can completely relate to that "drowning" feeling!!

 

Did the GI check for other viruses, bacteria's or parasites in your son's stool? I would also make sure that your son has his ASO titers done to see if there is strep in his body, maybe even his gut?

 

In terms of nutritional deficiencies, it appears that your son's gut issues are prohibiting his body from utilizing his nutrients properly.

 

I would recommend giving your son a high dose probiotic. We give our son 500 billion units a day and it dramatically improved his gut issues. One mom on here gives her son 1.5 trillion units a day. You can buys 50 billion unit capsules from Custom Probiotics or from Klaire Labs.

 

The high lymphocytes, I believe, means that he is fighting an infection.

 

I know this is so hard and I think Dr. Latimer is a great doctor. The waiting for these doctor visits can seem like an eternity.

 

Elizabeth

Edited April 21, 2010 by KeithandElizabeth

[familyof4]

fiveam - I sent you a message!

[thereishope]

Can you describe his food issues more? My son had them too. Maybe we can give some suggestions. At 5 years old, my son went down to maybe 36 pounds from 42 pounds in a matter of maybe a month or less. It was so scary.

[Suzan]

Sounds very similar to my dd a few years ago. Turns out she was intolerant to gluten and she has PANDAS. Her eating improved a lot by cutting out gluten. Her test results improved a lot, stools improved and she started growing all by getting rid of gluten. Of course getting rid of her hidden strep helped later too. Do you have access to a Dan! doctor in your area? They may not be able to help with the pandas but could help with the overall picture otherwise.

 

HUGS!

 

Susan

[fiveam]

Can you describe his food issues more? My son had them too. Maybe we can give some suggestions. At 5 years old, my son went down to maybe 36 pounds from 42 pounds in a matter of maybe a month or less. It was so scary.

 

 

Hi Vickie,

 

Well, my son's history is convoluted but I'll try and be short...

 

Up until about 18 mos my son was relatively healthy. He had eczema and food sensitivities (allergy testing) but no big red flags. At about 18 mos my mostly healthy, somewhat chubby, little boy decided he was going to start deciding what to eat. If I remember correctly he was down to rice cakes, cheese, fig newtons (he mostly gagged on these) and occasionally nuts which he also gagged on. I knew something was wrong but his ped said he was ok. I started him in SOS therapy w/a great OT. We couldn't even get a toothbrush in his mouth...definitely sensory issues. Anyway fastforward....I had to go into hospital for 3 mos around his 2nd birthday....his little sister was born at 26 weeks. Shortly after my third child was born we moved out of state and though we were trying to encourage my son to try new things he flatly refused. At 2.5 yrs Michael fell off a chair and couldn't walk. He ended up in hospital w/nutritional deficiencies. Soon after this we were seen by a ped GI who said Michael looked ok and that he would probably grow out of his problems. He put Michael on periactin. We visited a few feeding clinics. Didn't like any of them.

 

Fast forward again to about 2 yrs ago. Michael's feeding problems always seemed to be centered around sensory issues. Texture, sight, smell. Well, 2 yrs ago he started having panic attacks about swallowing things, toothpicks, his little sister swallowing small objs (she was way past the age of putting things in her mouth). About 3 mos ago he started having troubles w/smells and visual cues. He can't eat at the same table as others, he can't eat when smells other than that of the food he's eating are present, he can't eat in the presence of certain objects etc etc. So it almost seems as sensory has morphed into OCD?

 

Recently his diet has been TONS of cheese, small quantities of bread/toast, fig newtons and letter cookies (arrowroot biscuits). He has had severe constipation and fatty, smelly diarrhea and everything in between for the past yr. In the past 2 weeks he decided to cut out cheese because I said it might be making him worse....problem is he hasn't replaced it with anything. He's been drinking more of a nutritional smoothie that I concocted and in the last couple of days I've been able to add neocate jr to the mix. Today his poop was just about normal for the first time in a LONG LONG time. But it's not a simple issue of dropping the cheese because the smoothie has plain yogurt in it...and I think the blood tests that were specific for celiacs and food allergies were low or negative. So I don't think it's an issue of milk or gluten allergies.

 

He is 6.5yo, 40lbs, BMI 13.5

 

PS many sensory issues that he had early on have gone or have diminished....he can brush his teeth and swing on a swing

Edited April 21, 2010 by fiveam

[matis_mom]

I'm new to the world of OCD/PANDAS. I *think* my son has PANDAS but I feel as if I'm getting further and further away from answers. We had an appt w/Dr. Latimer today but she canceled it. It has been rescheduled for next week. My son has many symptoms that are listed for PANDAS but right now my biggest concern is his weight. We went to a Ped. GI doc last week and she said he had severe constipation and she sent us home w/directions for fleet enemas and miralax. Well, I agree he probably does suffer from constipation, it seems to cycle from diarrhea to constipation and I think he's in the "regular" part of the cycle right now. So all the enemas did was to give him the worst panic attack he has ever had and running diarrhea. On top of that when we went for the appt he picked up the flu and we are all flat on our faces now We also had a CBC and other blood work done as my son has in the past been hospitalized for nutritional deficiences. He weighed 40lbs last thurs, I'm sure he below 40 now. He has a BMI of 13.5.

 

The CBC test showed low nutraphils and high lymph, His MCH (whatever this is) was low. His basophils were on the low end but only just w/in the range. His BUN/creatinine level was high but I understand that underweight children frequently have this. Can anyone tell me what these numbers mean if anything?

 

I don't know who to contact. Am I overreacting? Maybe the bloodwork is fine. I've started adding neocate jr to my son's "smoothie"....he hasn't detected it but that's probably because he has the flu and can't smell anything....how ironic...the flu is a blessing!

 

I've contacted Drs around us (Ashburn VA), in MD and VA but no one wants to deal w/us. They always just give me other numbers for other specialists and those turn out to be useless. It seems as though he's too old for feeding clinics but too young for feeding disorders clinics (mostly dealing w/preteen/teen girls).

 

Has anyone heard of art therapy working for feeding disorders? I feel that nothing will work until my son is "disarmed" and relaxed if this makes sense.

 

I am drowning.

Fiveam,

I would recommend you contact Dr. Zackrison in Fairfax, VA. She is the one who diagnosed my son (he had strep in his gut). It might take a couple of weeks to get in with them but it's well worth it. She is excellent at looking at the whole picture and trying to get at the root of the problem in terms of the physical aspects of it (but we felt she was not addressing the neurological aspect aggresively enough, so we are seeing Dr. Latimer as well). I don't have the number handy right now but PM me if need more info or want to talk (we are not too far from you, in Warrenton)

As for the GI issues, I think getting him on good probiotics will definitely help, at least until you find a doctor who will listen.

[thereishope]

It's so hard to know why our kids won't eat. My son never told me the reason so I was left guessing. Like yours, he had some sensory issues with food (an example for him was being very sensitive to hot and cold). He also had a lot OCD surrounding food. He couldn't eat if certain people were at the table, he had so many rituals to complete before sitting down, theer was contamination fears that led to only being able to eat certain food. There's more, but that is a sample. well, I will add at one point I realized he wanted to eat but something kept him from eating.

 

He also feared other people's safety (not everyone, but certain people) like it sound like yours does. That's OCD too.

 

I know you probably have done this, but I kept all sorts of food at a level he could reach. I had to force myself to stop asking every 5 minutes if he was hungry. That made it worse.I always put a plate with food out for him at dinner,never knowing if it would be the one time he would eat it. Eventually with erradicating the strep (his trigger for that exacerbation) and a steroid burst (which may have increased his hunger and helped in that way too), he ever so slowly came around. It took him well over a month after getting antibiotics to eat "normal" again. Meaning he was eating food I prepared, cooked,and eating at the table with us.

 

It also becomes hard to overcome eating problems because the body gets use to the feeling of hunger or not eating much and adjusts. It's a process to teach the body the right way to feel again. If he's drinking more, that's good. His stomach will get used to what it feels like to be full and hopefully that signal of being hungry will start to surface again. Maybe after a week or so of the increase in liquids, make the same shake a little thicker without telling him. That way he has to chew every so slightly (assuming you may have some bananas or something in there). IF he questions you, you can eiterh say you didn't realize it was thick and tell him to keep drinking it and you'll reblend it in a minute. May not work, but get creative and teach him without him knowing you're teaching him.

Edited April 21, 2010 by Vickie

[fiveam]

How old is your son?

 

I know Dr. K has helped many children that were under weight or struggling with eating disorder. He even told me a story of a little boy who had a feeding tube in and when he eventually got better he administering his daily antibiotic through tube because he didn't like the taste of the medication. AND, yes the tube was eventually removed.

 

Could you consult with Dr. K via phone to give you some guidance?

 

-Wendy

 

Thanks for your input Wendy. My son is 6.5 yrs old. I will think about Dr K if things don't go well w/Dr Latimer. We are up to our neck in non-insurance accepting appts

Edited April 21, 2010 by fiveam

[fiveam]

I can completely relate to that "drowning" feeling!!

 

Did the GI check for other viruses, bacteria's or parasites in your son's stool? I would also make sure that your son has his ASO titers done to see if there is strep in his body, maybe even his gut?

 

In terms of nutritional deficiencies, it appears that your son's gut issues is prohibiting his body from utilizing his nutrients properly.

 

I would recommend giving your son a high dose probiotic. We give our son 500 billion units a day and it dramatically improved his gut issues. One mom on here gives her son 1.5 trillion units a day. You can buys 50 billion unit capsules from Custom Probiotics or from Klaire Labs.

 

The high lymphocytes, I believe, means that he is fighting an infection.

 

I know this is so hard and I think Dr. Latimer is a great doctor. The waiting for these doctor visits can seem like an eternity.

 

Elizabeth

 

No, the GI just took down info about my son. She then checked his muscles, which were fine and according to her she ascertained that he was severely constipated. This did not sound right to me as he had had a large bm the day before. According to her it was leakage. Now he has suffered from that in the past but this bm did not look like leakage to me (sorry this is probably WAY TMI for some).

 

Anyway she prescribed 2 fleet enemas, 12 hrs apart followed by 5 doses of miralax spaced an hr apart. I personally think this was excessive but what do I know? She sent him for bloodtests and I got hold of the results because I *thought* I was seeing Dr. L on wed. The bloodtests were performed last thurs but no one has called us to discuss them. We've googled the results and came up w/everything from Leukemia to IBS to some dire autoimmune disease....parents really should be banned from googling !

 

AS for probiotics...I did the basic ones, I tried VSL #3 (this one caused a lot of mucous....maybe cleaning out?) and right now I am giving him 2 capsules (powder added to smoothie) of florastor...I think that's 500. I agree, I think they help but maybe I need to step them up? I found that too much florastor makes him gassy....good or bad?

 

The lymph was 63.8 normal range 38-55

neutrophils were 27.2 normal range 30-50

neutrophils# were 1.55 normal 1.80-7.70

MCH 26.6 normal 27-34

 

Maybe these numbers are so close to normal that they're ok...I just hate not knowing how bad or ok they are.

 

We'll be calling the ped for some insight.

 

Thanks for your input!

[fiveam]

Sounds very similar to my dd a few years ago. Turns out she was intolerant to gluten and she has PANDAS. Her eating improved a lot by cutting out gluten. Her test results improved a lot, stools improved and she started growing all by getting rid of gluten. Of course getting rid of her hidden strep helped later too. Do you have access to a Dan! doctor in your area? They may not be able to help with the pandas but could help with the overall picture otherwise.

 

HUGS!

 

Susan

 

 

Hi Susan,

 

I am not familiar w/DAN drs. Are they natropaths? I would be interested in taking that route except that I am a vegetarian and someone once told me that natropthic drs tend to frown on vegetarian diets. Do they?

[sf_mom]

I think Dr. L is a great choice and so disappointing to have your child's appointment pushed back when he is so sick. Hang in there and Dr. K is always good as a back up (if needed) and sometimes nice to talk to just settle your nerves and know your child will get better with proper treatment.

 

We have also been doing high dose probiotics (1.5 trillion per day) in conjunction with bentonite clay (can be purchased at Whole Foods but half the price at IHerb). Bentonite helps to form up the acids in your bowel that your bowel is not healthy enough to form up on its own. It might provide some immediate help if you can sneak it into a smoothie or drink of some type. 2 Tablespoons to start. Coat the stomach. Our son is currently taking 1 1/2 cups a day per the direction of a nutritionist we are working with and it has NORMALIZED his poops no diarrhea, no constipation, proper color.

 

"The Canadian Journal of Microbiology states that bentonite clay can absorb pathogenic viruses, aflatoxin, pesticides and herbicides. The negatively charged minerals in the clay attract and bind with the positively charged toxins.

 

Bentonite has proved useful and healing in a variety of ways. These include eliminating painful ganglion cysts, improving intestinal regularity, reliving chronic constipation, diarrhea, indigestion and ulcers, improving physical energy, clearing complexions, enhancing alertness, improving tissue and gum repair, increasing resistance to infections, removing intestinal parasites, allergy and hay fever relief, eliminating anemia and acne, neutralizing allergens, reducing heartburn and indigestion by absorbing excess stomach acids.

 

Bentonite Clay is probably best known for it’s internal detoxification, cleaning the lining of the colon. As the colon becomes cleaner, it is able to function properly in absorbing nutrients, thereby increasing energy, as well as adding 71 trace and ultra-trace minerals"

Edited April 21, 2010 by SF Mom

[Fixit]

Hi SF....i wanted to say thanks for repeating thiis...as when dc mom repeated something...because for me,,,,,it takes reading, rereading and so on to get it and then look into it,...then forget what i was doing and go back....

anyway.....it may be coinsodnece, but it seems that things are a little better about 1/2 hour after the benonite......not as intense....

ours only says give 1 time a day and its' 1 tablspoon...so i give it after school

 

 

 

I think Dr. L is a great choice and so disappointing to have your child's appointment pushed back when he is so sick. Hang in there and Dr. K is always good as a back up (if needed) and sometimes nice to talk to just settle your nerves and know your child will get better with proper treatment.

 

We have also been doing high dose probiotics (1.5 trillion per day) in conjunction with bentonite clay (can be purchased at Whole Foods but half the price at IHerb). Bentonite helps to form up the acids in your bowel that your bowel is not healthy enough to form up on its own. It might provide some immediate help if you can sneak it into a smoothie or drink of some type. 2 Tablespoons to start. Coat the stomach. Our son is currently taking 1 1/2 cups a day per the direction of a nutritionist we are working with and it has NORMALIZED his poops no diarrhea, no constipation proper color.

 

"The Canadian Journal of Microbiology states that bentonite clay can absorb pathogenic viruses, aflatoxin, pesticides and herbicides. The negatively charged minerals in the clay attract and bind with the positively charged toxins.

 

Bentonite has proved useful and healing in a variety of ways. These include eliminating painful ganglion cysts, improving intestinal regularity, reliving chronic constipation, diarrhea, indigestion and ulcers, improving physical energy, clearing complexions, enhancing alertness, improving tissue and gum repair, increasing resistance to infections, removing intestinal parasites, allergy and hay fever relief, eliminating anemia and acne, neutralizing allergens, reducing heartburn and indigestion by absorbing excess stomach acids.

 

Bentonite Clay is probably best known for it’s internal detoxification, cleaning the lining of the colon. As the colon becomes cleaner, it is able to function properly in absorbing nutrients, thereby increasing energy, as well as adding 71 trace and ultra-trace minerals"

[sf_mom]

It really does help. He came home one day from school after being exposed to strep and he was TICing in ways I had not seen in a long time. I gave him a 1/2 cup bentonite clay and TICing stopped within 2 hours. We give him much, much larger doses but we are also working with a nutritionist who is guiding us and has assured us the amounts are safe. Both my husband and I are taking the same regimen as our son and I know I feel great as a result.