Not responding & active bleeding

I am having a rough night. Nolan (3) has had ITP for 6 weeks now. We have done IVIg, steroids, Winrho, Nplate.
He was admitted Tues with coke colored urine & a count of 2k. They have been giving super high doses of steroids, higher than normal IVIg & he is on weekly injects of Nplate. His count has gone as high as 10k but lasts only hrs. This morning was at 7k but I assume dropping as the urine has blood again tonight.
They want to do rutixin next & then talking spleen removal if that fails.

I am just at a loss. We are running out of options. Any opinions or input?

I am at the 3rd top hosp in the nation, cincinnati children's.

The same thing happened to me when I was 12. Doctors ended up doing a spleenectomy with me only having 2k platelet count. As soon as they removed the spleen my numbers jumped. Within an hour I was over 120k. I would say get rid of of the spleen. It may seem scary with everything being new and in front of you. Chin up and breath, it sounds like your son is in good hands. Good luck please keep us updated.

I'm sorry and I hope he gets better quick!! Your in our thoughts!!

I wouldn't be so quick to consider splenectomy. I understand the active bleeding, but children under 5 are very prone to infections without a spleen. N-Plate can take time to work for some.

Did his dark urine begin before or after Win-Rho?

So sorry to hear. It can be so scarey of what to do or what not to do. Hope you will soon find answers.

I'd reiterate what Sandi said in case you missed it. When did the dark urine start? It's usual for WinRho to cause it.

Ann,
It seems I remember you giving an explanation before of why the urine turns red after using WinRho (where that is actually an expected response). Was that you? If so, can you explain it again, please? And, why in the world is this not mentioned to the parents as a possibility? (Or, does this happen in nearly all who take WinRho?) WinRho was my daughter's first treatment. She went into anaphylactic shock from it, 20 minutes after being discharged from the hospital. Fortunately, I had the homeopathic remedy Apis, which is known to help in these allergic type of reactions, gave it, and it did open her throat again, and stopped the shock reaction. But, for the next 24 hours, she continually vomited "coffee grounds" (indication of blood in the GI tract), and also had coffee-colored urine. When I called the hospital, they simply told me there was nothing more that they could do for her, as they'd already given her the treatment(WinRho). I thought she was bleeding internally, but from what you said before, it sounds as if this is rather, a fairly common reaction from the WinRho. Is that correct? That was the only time I remember her having blood in her urine or vomiting the coffee grounds. When I read what you wrote before, I just couldn't believe that not one of the hospital staff ever told me this was from the WinRho itself, and not the ITP!


Meador, you may want to look at some of the Natural Treatments (there's a section for those). My daughter did not respond to anything we tried, either, and was mostly btw 3k-8k. I was a Homeopathic student at the time, halfway through my studies. I eventually found a specific homeopathic remedy for her, that took her platelets from 11k to 411k in 4 days. Since then, she has been in remission for 8 years. And, besides curing her ITP, it has made a night and day difference in every other aspect of her physical health, emotions and behavior, as homeopathy treats the entire person, and not just a single aspect. And, as a bonus, there are no side effects or toxicity, if given according to homeopathic principles.

It is not normal for bleeding from the stomach after WinRho. I can't understand why a hospital would ignore such a symptom as it is a symptom of DIC which is the subject of the black box warning on WinRho.

WinRho works by coating the red blood cells with antibody which marks them for destruction. They are then destroyed in the spleen. The spleen is so crowded out and busy with the red cells that it leaves the platelets alone. When red cells are destroyed, either normally at the end of their life or with WinRho, the haemoglobin is released. When it overspills into the kidneys it is seen as a dark colour as it is haemglobin that gives the red colour to the blood.

So, Ann, am I understanding you to say that it is NOT normal to be bleeding from the stomach (i.e., vomiting coffee grounds), but it would be normal to have dark colored urine, as that is simply the WinRho doing what it was designed to do?

I could not understand the hospital not taking her vomiting blood and coffee grounds, either, as it sure seemed serious to me! But, as I said, they told me there was nothing else they could do for her, other than 'monitor' her, as the treatment had already been given. It was a super busy night in the ER, no room, and the nurse seemed more than a little annoyed with my questions. She was the same nurse who had emphatically insisted that WinRho was 'safer than Tylenol' and side effects were almost non-existent, when I had pressed her for information on possible side effects. As my daughter had never had any sort of drug or treatment before, not even an antibiotic, had no known allergies, I had no reason to suspect she would have an anaphylactic shock reaction, either, which I was also never told to watch for. That is a very frightening thing, to see your child dying in front of your eyes, and it happens so suddenly.

The 1st time my son was in hospital, 1st treatment ever tried was win-rho. They didn't warn me of much they only said they would have to make sure he isn't anemic. The 2nd time we went out just for treatment, she kept him a few hours to monitor him, and when she was ready to release him she said that she felt he would be fine. She said my biggest concern would be a change in color of urine, if this does happen call your local hospital. I assume the 1st time it wasn't even mentioned to me because he was in hospital so I assume they were watching and monitoring him and not alerting me, this time he was going home so I guess they felt it should be mentioned...

Crystal, what you say makes sense. It also makes me realize how negligent the hospital was with my daughter, on numerous occasions. After her first treatment upon diagnosis, WinRho, they only monitored her for the first half hour because of my concern over side effects. That was not their normal protocol then. It was almost midnight, a super busy night and the nursing staff seemed highly irritated that I was even concerned and treated me like I was some hysterical parent, to even be concerned. They discharged us with no instructions on what to look for. It was 20-30 minutes later when she went into anaphylactic shock in the middle of an all-night diner. The Apis saved her. When I called them to report what had happened and that now she was vomiting blood and peeing cola-colored urine, even more surprised that they did not insist we come back in. Rather, they discouraged it,which made me feel like I was overreacting. The weird thing is, this is a major Children's Hospital and they are sent all the pediatric ITP cases in the region.

They didn't tell me either but I read on the web that coloured urine is a bad sign so when I saw I had it I worried all night. But I felt fine next day so didn't bother. When I went to the hospital next the haema asked me if I'd had any problems and I mentioned the coloured urine and he said "oh that's normal because .." and he told me how it works. So on one hand the coloured urine is normal and on the other it's a bad sign which is even more confusing. But there's much more to DIC than that, chills and other bleeding and so on should make one go back to the hospital.

wow April, I cannot even imagine dealing with what you have gone through. Just sounds so wrong to me that the hospital basically blew you off. I am so sorry.

Thank you all for your input & support.

The blood did start after the WinRho, about a week later. His hemoglobin dropped as well & he got red blood cells.

He was started on rituximab yesterday and given his weekly inject today of Nplate. His count was at 4k this morning & so far no blood in the urine. This whole stay in the hospital has been no blood, then blood. Once his counts drop we see blood, when they go up some (8-10 range) the blood stops. However, we cannot seem to get tjose type of counts for more than just hours.

I hope something works fast!! Good luck!!!

The blood in the urine sounds like a low count thing then. Maybe not helped by the WinRho but not wholly caused by it. I'm sorry that you are going through this as it seems your child is one of the few who really will need treating while the others can get by with watch and wait. I hope something works for him and he maintains a high enough count to stop the bleeding.

Hey, just wondering how the little guy is doing?? Has he broke out of the hospital yet? Has the bleeding stopped?

I think about you often, always wonder how he is doing..

Hope all is well!!!

He stayed for 2 weeks & I asked to come home. We just got back home late last night, so nice. His count is at 1k & we are waiting for the meds to start working, crossing everything. He has a picc line now & that has made it super nice. He is on BP meds, weaning off steroids, previcid, nplate & retuxin. Still has nosebleeds & lips bleeding but none in the urine at this point. Bruises & petechiae. Home help care comes 1x a week.

Wow! That is one beautiful child!! Makes my heart melt. He has the most unusual and gorgeous eyes. Glad to hear that he's back home. It's never too fun being in the hospital.

To help him recover more quickly, you might want to give him the biochemic cell salts,
#2 Calcarea phosphorica 6X and #4 Ferrum phosphoricum 6X. They can be given 4 pills each, 4 times/day
Cell salts are like mineral supplements that are absorbed and assimilated very easily. Because a milk/sugar pill is used as the carrier, babies and small children can easily take them. In fact, they usually LOVE them! They melt in the mouth as soon as they get wet. These each play a role in rebuilding the blood, oxygenating it, for producing new blood cells, helping with bruising, etc:

CALCAREA PHOSPHORICUM #2 (Phosphate of Lime)

The sphere of the Phosphate of Lime includes all bone diseases, whether due to some inherited dyscrasia or to defective nutrition in osseous and other structures dependent upon a proper distribution of lime molecules in the body.

blood dyscrasia
Etymology: AS, blod + Gk, dys, bad, krasis, mingling
a pathologic condition in which any of the constituents of the blood are abnormal in structure, function, or quality, as in leukemia or hemophilia. (or ITP!)










It is the bone cell-salt. Without this element, no bone can be formed and hence it is a valuable remedy in childhood when the bones are in the condition of being formed.

Calc. phos. is also found in the gastric juice and so plays an important part in the process of digestion and assimilation.

It is of importance in anaemia and in chlorosis, which often result from heavy or continual bleeding symptoms, particularly excess menstrual bleeding, occurring in the ITP patient.

Calc-phos is needed during dentition when the teeth are slow in making their appearance and decay too rapidly; also in other teething disorders. (It’s one of the common remedies in most brands of teething tablets.)

In convalescence after acute and chronic wasting diseases, it acts as a tonic by building up new red blood corpuscles and by restoring the lost vitality. Valuable for restoring the milk supply and vitality to weak and exhausted nursing mothers.

When there is deficient development or growth of children and young people, emaciation without apparent cause, premature babies, all will respond magnificently to the influence of Calc-phos.

Aids the union of fractured bones that are slow to heal.
Chronic enlargements of the tonsils and goiter.
Rheumatism of the joints
Scoliosis, spinal weakness and curvature
Suppuration of bones


FERRUM PHOSPHORICUM (Ferrum phos), Cell Salt #4

Ferrum Met. (iron) + Phosphorus (phosphoric acid)
Our First Aid Cell Salt. It is the ‘rescue remedy’ of the cell salts
1st stage of all acute diseases & it’s great for the end stage of disease, convalescent.




Ferrum phos is the Cell Salt for the Blood:
Biggest remedy in homeopathy for ANEMIA,
Anemia from loss of blood
Anemia after radiation, surgery, or drug overdose
NBWS (Never Been Well Since) blood loss
Non-specific hemorrhage
#2 nose bleeding remedy (Phosphorus is #1)
Bleeding from fibroids
Bleeding hemorrhoids
Uterine hemorrhage with bright red blood, and a heavy “flooding” period.
Good for low hemoglobin in pregnancy.
Blood in the urine with no symptoms
Capillary fragility
Bruise very easily

Helps people recover from infectious disease, travel, fatigue.
Everything’s fine but they are tired, loss of vitality, then think of Ferrum Phos.
“Bone marrow transplants”
People coming out of the hospital
Low blood pressure
Poor circulation.

The “Blush” remedy—They often appear healthy, with circumscribed, red rosy cheeks, yet in fact they are weak and anemic.
Ferrum phos is a good remedy for runners and marathon runners, as it increases oxygenation of the blood.
A comment from a race horse owner during one of Robin Murphy’s lectures:
“Ferrum Phos is one of the best lung remedies and oxygen builders – every race horse that used it improved in performance and reduced damage to the lungs”.

WELCOME HOME!!!! I am throwing you a welcome home party via internet. He is so cute, poor little guy! My son's mouth use to get like that, it was horrible, I had to give him 45mg of pred at 1 yr old to clear it up..as a result my son's teeth are horrible he even chipped his front tooth. Prednisone and I are NOT friends!!

You guys are still in my thoughts, I hope something kicks in soon!!

Thank you so much ladies :kiss:

Nolan's count came back last night at 0. They still want & to wait & watch. He has more petechaie than I have ever seen on him, new bruising, blood blisters & nosebleeds. He is so happy to be home & is in good spirits.

He is just too cute!! I am sorry he hasn't had improvement, I do know how frustrating it is, but that doesn't make it any easier on you!!
I will NOT try to push you into anything, but I would personally suggest Cell Salts

Also did you know...Internal Bleeding: As lemon has antiseptic and styptics properties, it can stop internal bleeding. You can apply lemon juice on small cotton and place inside to nose to stop nose bleeding...?? It was only by chance I found that, but I figured it couldn't hurt.

I hope for good news soon!!

What a handsome little man!

Hey been awhile since we've heard from you, just wondering how everything is going?

Friday when the home health care nurse came she did a CBC and his count was 5 we were so excited. Today we are at the hospital for his weekly treatments, the last of the retuxin, and his count is back to a 1

Your son is so adorable i cant even imagine how hard this has been for you.
I am happy he's doing okay at home now.
You guys are in my prayers,

Meador:

Rituxan can take time to work...usually about 4 to 12 weeks after the first infusion. There are people who never respond, but there is still hope for your son at this point.

Try not to be too discouraged by his slight drop in counts. I know you are clinging to anything you can get, but counting platelets is not an exact science and there is a margin of error of about 5k or more. Also, platelets fluctuate a lot and it could go from a 1 to a 6 in hours. When someone has a count done, they are basically just catching what it is at the moment.

Hang in there.

I am sorry..You must be so frustrated!! I hope the Rituxan kicks in and soon.. He is always in my thoughts..

Came back to look for an update. Think about you guys all the time. Hope the treatment kicks in soon

Meador -- I'm following this thread now, too, and just adding my prayers to the many coming your son's way. Hope the rituxan works for him. Keep us posted. Glad you are all home. Know an army of us are behind you all.

I am wondering if any one thinks his ITP may actually spontaneously pass? that is the acute kind that kids can sometimes get and not the chronic kind? I assume the doctors are treating it so aggressively because of the symptoms, but I hope it just passes. I've seen that happen on here -- the ITP clears up spontaneously esp for kids who've had it less than a year.

MY COUNTS ARE ALWAYS SINGLE DIGITS WHAT HOMEOPATHIC REMEDY DID U USE TO GET THAT KIND OF PLATELET JUMP